peer support in mental health literature review

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• v.7(6); 2020 Jun

Peer Support in Mental Health: Literature Review

Reham a hameed shalaby.

1 Department of Psychiatry, University of Alberta, Edmonton, AB, Canada

Vincent I O Agyapong

A growing gap has emerged between people with mental illness and health care professionals, which in recent years has been successfully closed through the adoption of peer support services (PSSs). Peer support in mental health has been variously defined in the literature and is simply known as the help and support that people with lived experience of mental illness or a learning disability can give to one another. Although PSSs date back to several centuries, it is only in the last few decades that these services have formally evolved, grown, and become an integral part of the health care system. Debates around peer support in mental health have been raised frequently in the literature. Although many authors have emphasized the utmost importance of incorporating peer support into the health care system to instill hope; to improve engagement, quality of life, self-confidence, and integrity; and to reduce the burden on the health care system, other studies suggest that there are neutral effects from integrating PSSs into health care systems, with a probable waste of resources.

In this general review, we aimed to examine the literature, exploring the evolution, growth, types, function, generating tools, evaluation, challenges, and the effect of PSSs in the field of mental health and addiction. In addition, we aimed to describe PSSs in different, nonexhaustive contexts, as shown in the literature, that aims to draw attention to the proposed values of PSSs in such fields.

The review was conducted through a general search of the literature on MEDLINE, Google Scholar, EMBASE, Scopus, Chemical Abstracts, and PsycINFO. Search terms included peer support, peer support in mental health, social support, peer, family support, and integrated care.

There is abundant literature defining and describing PSSs in different contexts as well as tracking their origins. Two main transformational concepts have been described, namely, intentional peer support and transformation from patients to peer support providers. The effects of PSSs are extensive and integrated into different fields, such as forensic PSSs, addiction, and mental health, and in different age groups and mental health condition severity. Satisfaction of and challenges to PSS integration have been clearly dependent on a number of factors and consequently impact the future prospect of this workforce.

Conclusions

There is an internationally growing trend to adopt PSSs within addiction and mental health services, and despite the ongoing challenges, large sections of the current literature support the inclusion of peer support workers in the mental health care workforce. The feasibility and maintenance of a robust PSS in health care would only be possible through collaborative efforts and ongoing support and engagement from all health care practitioners, managers, and other stakeholders.

Introduction

Peer support services (PSSs) are novel interventions recently adopted in mental health systems worldwide. It is believed, however, that PSSs date back to more than three centuries to the moral treatment era [ 1 ], albeit on an informal basis. Diverse definitions and classifications for PSSs have been provided in the literature [ 2 - 4 ], and numerous reports have praised and supported the service provided by peer support workers (PSWs) [ 5 - 8 ]. However, other literature suggests the neutral effects of PSSs, with weak associated evidence to support such services [ 9 , 10 ]. The potential impact of PSWs on their peers [ 11 - 14 ] has received considerable attention in the literature.

PSSs have been introduced in different contexts, such as family PSWs [ 15 - 19 ], the forensic field [ 20 , 21 ], and online PSSs. A considerable number of strategies were proposed to generate an effective PSS in the mental health field amid a number of associated concerns and challenges [ 22 - 25 ].

This general review sheds light on PSWs’ experiences, benefits, challenges, opportunities to expand access to quality addiction, and mental health care using PSSs. The review was conducted through a general search of the literature on MEDLINE, Google Scholar, EMBASE, Scopus, Chemical Abstracts, and PsycINFO. Search terms included peer support, peer support in mental health, social support, peer, family support, and integrated care. We began the review with an examination of the definitions, origins, and types of peer support contributions and within different clinical contexts, aiming at deepening the view to the diverse effects of such a workforce. We then continued with examining the transition from a patient role to a PSW role and their incorporation into mental health systems. Thereafter, we provided a conceptual framework for the effects of peer support and stigma in relation to PSWs. We concluded the review by examining the benefits and challenges associated with PSSs and provided a commentary on future directions for PSSs in mental health.

Definitions

Peer support has diverse meanings in the literature. For example, it is a system of giving and receiving help founded on key principles of respect, shared responsibility, and an agreement of what is helpful [ 26 ]. A peer is defined as an equal , someone with whom one shares demographic or social similarities, whereas support refers to “the kind of deeply felt empathy, encouragement, and assistance that people with shared experiences can offer one another within a reciprocal relationship” [ 3 ]. The Mental Health Foundation in the United Kingdom defined peer support in mental health as “the help and support that people with lived experience of a mental illness or a learning disability can give to one another” [ 27 ]. Peer employees were also defined as “individuals who fill designated unique peer positions as well as peers who are hired into traditional MH positions” [ 28 ]. In 1976, authors defined self-help groups as “voluntary small group structures for mutual aid in the accomplishment of a specific purpose...usually formed by peers who have come together for mutual assistance in satisfying a common need, overcoming a common handicap or life-disrupting problem, and bringing about desired social and/or personal change” [ 28 ]. Although the mutual relationship was sometimes overlooked and rather described as an asymmetric or nearly one-directional relationship [ 29 ], it is emphasized upon as 1 of the 4 main tasks for peer support accomplishments, which are mutuality, connection, worldwide, and moving toward rather than moving away [ 30 ].

Origin and Growth of Peer Support

Davidson et al [ 11 ] have expressed the paradigm that calls for new models of community-based practice, which turned away from case management and from conceptualizing old practices under new terms. In the 1990s, peer support was formally introduced as a service in community mental health care. However, there is evidence of its practice throughout history, including during the moral treatment era in France at the end of the 18th century [ 1 ]. Recently, peer support has been rapidly growing in many countries and could attract a considerable amount of research [ 22 ]. Although Lunatic Friends’ Society is known as the earliest peer support group in mental health, which was founded in England in the middle of the 19th century [ 31 ], self-help groups were described as the oldest and most pervasive of peer support types [ 28 ]. Some peer-run groups also formed in Germany in the late 19th century, which protested on involuntary confinement laws. In addition to this, several individuals in the 18th and 19th centuries publicized their protests about their treatment in autobiographies and petitions [ 32 ]. The origin of peer support even reaches further back than the earliest asylums [ 33 ]. Some authors suggest that peer support is not based on psychiatric models and diagnostic criteria [ 3 ]; however, it is about “understanding another’s situation empathically through the shared experience of emotional and psychological pain” [ 34 ]. In the United States, the start of legitimacy for peer support was ignited in 2007 by considering the conditions under which PSSs could be reimbursed by Medicaid [ 35 ]. Although this reform was entailing a recovery model, which has been adopted by health care providers and stakeholders in many “English-speaking” countries, it was not the case in many other countries, in which this reform was yet to be well formulated [ 36 ].

Transformational Concepts in Peer Support Service

Intentional peer support: informal to formal peer support evolution.

Intentional peer support (IPS) is described as a philosophical descendant of the informal peer support of the ex-patients’ movement in the 1970s [ 3 ]. It depends on a way of communication that immerses the provider into the recipient experience by stepping back from one’s story and being eagerly open to others’ stories [ 30 ]. In the field of psychiatry, trauma is blamed for playing a pivotal role in the experience, diagnosis, and treatment, and peer support is described as the logical environment for disseminating trauma-informed care (TIC) or service, which enables building relationships based on mutuality, shared power, and respect [ 37 ]. In the same context, trauma-informed peer support usually begins with the main question, “What happened to you?” instead of “What is wrong with you?” [ 30 ]. TIC is an explanatory model that identifies PSWs sharing lived experiences, ensuring safety and functioning as an advocate, and a liaison to patient management plans, where empowerment and intervention models are strongly emphasized upon [ 38 , 39 ]. The shift from a traditional biomedical model to recovery-oriented practice is meant to perceive trauma as a coping mechanism rather than a pathology [ 38 , 40 ]. This clearly entails training of all service providers for better acknowledgment and comfort in dealing with trauma survivors , with an understanding of trauma as an expectation rather than an exception [ 41 ]. Although the TIC concept has evolved over the years, it still lacks guidance, training, staff knowledge, and governmental support, which are necessary to ensure successful policy implementation [ 40 ]. The role of PSWs also extended to support those at risk of trauma events because of the nature of their work, including child protection workers, who are at risk of posttraumatic stress disorder or anxiety disorder [ 42 ]. Although IPS grew from the informal practices of grassroots-initiated peer support, it differs from earlier approaches because it is a theoretically based, manualized approach with clear goals and a fidelity tool for practitioners [ 14 ]. It instead focuses on the nature and purpose of the peer support relationship and its attention to skill building to purposefully engage in peer support relationships that promote mutual healing and growth [ 3 ]. Transitioning from informal to formal roles provides not only well-formulated expectations of the role but also a better chance to identify the potential conflict of the PSWs’ mixed identity [ 43 ].

Research conducted on PSWs has been conceptualized throughout history [ 22 ]. Starting with feasibility studies, at the initial stage, it is followed by studies comparing peer staff with nonpeer staff and, finally, the studies that answer questions such as the following:

• Do interventions provided by peers differ from those provided by nonpeers?
• What makes peer support a unique form of service delivery?

If so, to the previous question, what are the active ingredients of these aspects of peer support, and what outcomes can they produce?

Studies that provide answers to the latter set of questions are expected to provide a deeper understanding of the philosophical underpinnings of the IPS concept for PSSs.

The Transformation From Patient to Peer Support Providers

The shift from being a service recipient to a service provider has been contributing as a driving force to restore fundamental human rights, especially among those with serious mental illnesses (SMIs) [ 22 ]. Telling the personal lived experience leads to a profound shift, from telling an “illness story” to a “recovery story” [ 4 ]. This involved an identity transformation from being perceived as a victim or a patient to a person fully engaged in life with various opportunities ahead [ 4 ]. This transition is seen as a gradual process and one that is supported by several other personal changes with expected challenges [ 44 ]. Moving a full circle to include PSWs as the service provider has been undertaken by mental health services to further exceed the transformational role, which was primarily the main aim of providing such a service [ 45 ]. A liminal identity was given for PSWs as laying between several roles, being service users, friends, and staff. Thus, the professionalism of the PSW role might not be a successful way to ensure individual well-being or to promote the peer support initiative [ 46 ]. Thus, successful transitioning from the patient to PSW role involves fundamental functional shifts achieved through overcoming multiple barriers at the personal, health system, and societal levels.

Effects of Peer Support Service in Different Contexts

Trained PSWs or mentors can use communication behaviors useful to different client groups. Many studies showed the effectiveness and feasibility of applying for peer support as follows:

Severe or Serious Mental Illness

Generally, the evidence for peer support interventions for people with SMIs has been described as moderate to limited with mixed intervention effects [ 2 , 47 ]. On the one hand, adding PSSs to intensive case management teams proved to improve activation in terms of knowledge, skills, confidence, and attitudes for managing health and treatment. Hence, patients become healthier, report better quality of life (QOL), engage in more health care practices, and report more treatment satisfaction [ 48 , 49 ]. On the other hand, a systematic review of randomized controlled trials (RCTs) involving adults with SMIs, while showing some evidence of positive effects on measures of hope, recovery, and empowerment at and beyond the end of the PSS intervention in this review, did not show any positive effects on hospitalization, satisfaction, or overall symptoms [ 10 ]. Similarly, a Cochrane systematic review of PSSs for people with schizophrenia found inconclusive results, with a high risk of bias in most of the studies and insufficient data to support or refute the PSS for this group [ 50 ].

Addiction and Drug Users

In recent years, peer recovery support services have become an accepted part of the treatment for substance use disorders, providing a more extensive array of services that are typically associated with the mutual supportive intervention [ 51 ]. This is in contrast to the use of peer support for SMIs where evidence is still developing. The Substance Abuse and Mental Health Services Administration (SAMHSA) defined peer recovery support for substance use disorders as “a set of nonclinical, peer-based activities that engage, educate, and support individuals so that they can make life changes that are necessary to recover from substance use disorders” [ 51 ]. Despite the long-term nature of substance abuse, immersion in peer support groups and activities and active engagement in the community are considered the 2 critical predictors of recovery for more than half the dependent substance users [ 52 ].

A number of trials studied the peer support effect on drug users, especially in the emergency department [ 53 , 54 ]. Another randomized trial found that a socially focused treatment can affect change in the patient’s social network and hence increase support for abstinence, for example, an increase of one nondrinking friend in the social network is translated into a 27% increase in the probability of reporting abstinence on 90% of days or more at all follow-up visits, which extended to 15 months [ 55 ].

Forensic Peer Support Service

The forensic peer system refers to the engagement of peer specialists who have histories of mental illness as well as criminal justice involvement and who are trained to help other patients sharing similar accounts [ 20 ]. As referred to by Davidson and Rowe [ 20 ], “Forensic Peer Specialists embody the potential for recovery for people who confront the dual stigmas associated with SMI and criminal justice system involvement.”

They offer day-to-day support for those released early from jail by accompanying them to initial probation meetings or treatment appointments and referring them to potential employers and landlords, helping people to negotiate and minimize continuing criminal sanctions and training professional staff on engaging consumers with criminal justice history [ 20 , 21 ]. PSWs with incarceration histories could successfully identify the liminal space in being supportive rather than providing support for the criminal offense, in contrast with the conventional methods that directly confront criminality [ 56 ]. In fact, having criminal history is the “critical component” for achieving recovery [ 56 ]. Multiple initiatives have been introduced to facilitate a reentry process for people recently released from incarceration, including Forensic Assertive Community Treatment, Assertive Community Treatment, Critical Time Intervention, and Women’s Initiative Supporting Health Transitions Clinic, through diverse community support groups involving PSWs [ 57 , 58 ].

A peer support program undertaken by older community volunteers was effective in improving general and physical health, social functioning, depression parameters, and social support satisfaction, especially in socially isolated, low-income older adults [ 59 ]. The Reclaiming Joy Peer Support intervention (a mental health intervention that pairs an older adult volunteer with a participant) has the potential for decreasing depression symptoms and improving QOL indicators for both anxiety and depression [ 60 ]. Engaging the community in health research could be of a high value in acknowledging their own health needs [ 61 ].

Youth and Adolescents

Peer support programs are mostly needed for university students, where challenges with loneliness and isolation are well recognized [ 62 ]. Hence, a need emerged for training peers to support their peer adolescents with the prospective challenges at this age [ 63 ]. Trained peer support students without necessarily having a lived experience were also examined in England [ 64 ]. The study included university students measuring the acceptability and impact of the volunteer peer support program through 6 weekly sessions. Students with lower mental well-being were more likely to complete the course, and an improvement in mental well-being was recorded for those who attended more frequently. Overall, peers remain to be an essential source of support for young people experiencing mental health and substance use problems [ 65 ].

Medically and Socially Disadvantaged Subgroups

A peer-led, medical self-management program intervention has been beneficial for medically and socially disadvantaged subgroups [ 60 ]. The Reclaiming Joy Peer Support intervention has the potential for increasing QOL and reducing depression in low-income older adults who have physical health conditions [ 60 ]. Similarly, for those who are “hardly reached,” it was indicated that the PSS provided is even more effective in these marginalized populations [ 66 ]. A Health and Recovery Peer program was delivered by mental health peer leaders for people with SMIs, resulting in an improvement in the physical health–related QOL parameters such as physical activity and medication adherence [ 49 ]. Peer-delivered and technology-supported interventions are feasible and acceptable and are associated with improvements in psychiatric, medical self-management skills, QOL, and empowerment of older adults with SMIs and or chronic health conditions [ 67 , 68 ].

Persons With Disabilities

The United Nations’ Convention on the Rights of Persons with Disabilities (CRPD) was adopted in 2007 and stated that “persons with disabilities should have equal recognition before the law and the right to exercise their legal capacity” [ 69 - 71 ]. Therefore, a positive emphasis upon the supported decision making and the fight against discrimination is evident through the convention. Nevertheless, these initiatives have been perceived as incomplete considering many challenges such as the community social status and ongoing perceived stigma of people with disabilities (PWDs) [ 70 , 72 ]. “Circle of support” is an elaborate example of an applicable peer support model for PWDs that has helped in decision making and facilitating communication [ 70 , 73 , 74 ]. This is clearly aligned with the paradigm shift from the biomedical to the socially supportive model of disability, which was provided by CRPD [ 70 ].

Peer Support for Families

Families may act either as sources of understanding and support or stigmatization through ignorance, prejudice, and discrimination, with subsequent negative impact [ 19 ]. In addition, the distress and burden associated with caring for a family member with mental illness are evident, where 29% to 60% endure significant psychological distress [ 17 ]. Family support can be financial or emotional; however, moral support was perceived as the substantial motivating factor for relatives who are ill [ 19 ]. In the last few decades, consistent and growing evidence that supports the inclusion of family members in the treatment and care of their misfortunate relatives has been developed. This has been mainly evident in the youth mental health system that urged the transformation change, which incorporates family members in the health care service provided to their youth [ 18 , 75 ]. Many PSWs have been engaged in family psychoeducation as family peers or parent partners, especially for those with the first episode of psychosis [ 76 ]. Although familial education is crucial and needs to be provided through different scales [ 19 ], an extensive matching of PSWs and the caregivers has not been perceived as a necessity to create a successful volunteer mentoring relationship [ 77 ]. Multiple initiatives have taken place all over the world. In India, a program titled “Saathi” was established for family members of residential and outpatient mental health service users that had dual goals of offering information and developing a peer support mechanism for family members of people with different mental health conditions [ 19 ]. In Melbourne, Australia, “Families Helping Families” was developed, where family PSWs are positioned in the service assessment area and in the inpatient unit to ensure early involvement [ 18 ]. An impressive peer support guide for parents of children or youth with mental health problems is provided by the Canadian Mental Health Association, British Colombia Division [ 15 ]. In Ontario, family matters programs are provided through provincial peer support programs [ 16 ].

The term “transforming mental health care” entails active involvement of families in orienting the mental health system toward recovery [ 78 ]. Family members are to have access to timely and accurate information that promotes learning, self-monitoring, and accountability [ 79 ]. The inclusion of family members as partners of the medical service is the new philosophy, with a subsequent shift from the concept of clinic-based practice to a community-based service approach [ 78 ].

Peer Support Service in Low- and Middle-Income Countries

Several initiatives took place in low- and middle-income countries, such as in rural Uganda, where a trained peer-led team provided 12 successful training sessions of perinatal service for a group of parents over a 6-month period, which resulted in better maternal well-being and child development, compared with another control group [ 80 ]. Similarly, successful community peer groups were conducted in rural India and Nepal, with high feasibility and effectiveness rates, and perceived as “potential alternative to health-worker-led interventions” [ 81 - 83 ]. In addition, adding counseling and social support groups entailing PSWs to the conventional medication treatment for patients with psychotic disorders was tried in a cohort study in Uganda; however, the results were not significantly different from those who received only medications [ 84 ]. This might be because of the underpowering of community services offered, compared with the robust medication regimens [ 85 ].

It is evident from the aforementioned information that there is mixed evidence on the effectiveness of PSW interventions in different contexts. For example, for patients with SMIs, systematic reviews suggest that there is some evidence of positive effects on measures of hope, recovery, and empowerment but no positive effects on hospitalization, satisfaction, or overall symptoms [ 10 ]. Similarly, for patients with addiction issues, although being involved in a peer network did not reduce social assistance for alcohol, they somewhat increased behavioral and attitudinal support for abstinence as well as involvement with Alcoholics Anonymous [ 55 ]. Furthermore, although many observational studies support the PSW role in the other contexts described above, there is a current dearth of literature involving RCTs and systematic reviews reporting on the effectiveness of PSWs in these specific contexts. Thus, there exist opportunities for conducting RCTs in the described contexts.

The Conceptual Framework for the Effects of Peer Support Service

The conceptual framework is based on empirical evidence, suggesting that the impact of PSWs reflects upon the recipients of such a service [ 4 , 76 , 86 - 90 ], the global health system [ 22 , 47 , 76 , 86 , 91 , 92 ], and the PSWs themselves [ 13 , 28 , 76 , 93 ], as shown in Figure 1 . The framework has, therefore, been developed by authors through a general review of the literature that examines the effects of PSSs on patients, health care systems, and also PSWs themselves so as to provide evidence-based material supporting all possible effects of PSW roles.

The conceptual framework for the impact of peer support workers in mental health. MH: mental health; PSS: peer support service; PSW: peer support worker.

Supportive social relationships can have a dual opposing effect on individuals’ lives, either as a family member or as social and professional networks through sharing their disappointments and pains or their joy and successes [ 11 ]. Useful roles for PSSs are identified in many studies. For example, adding 3 peer specialists to a team of 10 intensive case managers provided better QOL with greater satisfaction [ 12 ], stigma reduction, and less health service utilization [ 89 , 91 ]. The economic impact of PSSs has been extensively studied in the literature, concluding cost containment for the health care system in terms of reduction of readmission rates, emergency visits, and fewer hospital stays, which altogether substantially exceed the cost of running a peer support program [ 92 ]. Moreover, PSWs are looked at as providers of a service at a cheaper cost compared with other health care providers [ 94 , 95 ]. For example, about US $23,000 is paid to PSWs in the United States compared with around US $100,000 for a nurse practitioner [ 96 ]. However, a PSS is not posited as a substitute for clinical services, rather it is perceived as an intrapersonal and social service that provides a dual role of effective service and with humanizing care and support [ 14 , 26 , 97 ]. This role extends to cover PSWs themselves, in terms of improved overall well-being and self-confidence, reframing identity, and enhancing responsibility either toward themselves or their peers [ 13 , 93 ].

Although PSWs can play a variety of tasks, managers who hire them may want to ensure that improving patient activation is included in their range of duties [ 48 ]. In 2 concurrent studies, a significant increase in QOL satisfaction, reduction of rehospitalization rates, and reduction in the number of hospital days were recorded when adding PSSs to usual care [ 22 , 98 ]. In another study engaging 31 peer providers in diverse mental health, agencies identified 5 broad domains of wellness, including foundational, emotional, growth and spiritual, social, and occupational wellness [ 4 ]. In a systematic literature review for people with SMIs, peer-navigator interventions and self-management were the most promising interventions [ 47 ]. PSWs’ effects are diversified through sharing in different contexts. For example, positive impacts on the physical health of their peers have been recorded [ 49 ]. Peer-based approaches have been used to deliver behavioral weight loss interventions [ 90 ]. For young students, structured peer support for depression may have benefits in improving students’ mental well-being [ 64 ]. In the case of crisis houses, greater satisfaction was achieved through a provided informal PSS [ 99 ]. Robust studies, therefore, recommend implementing peer support programs [ 10 , 18 ].

On the other hand, authors found that PSSs met moderate levels of evidence and that effectiveness varied across service types, for example, with “peers in existing clinical roles” was described as being less effective than the “peer staff added to traditional services” and “peer staff delivering structured curricula” [ 3 ]. Other reviews suggested that current evidence does not support recommendations or mandatory requirements from policy makers to offer programs for peer support [ 9 , 10 ].

Peer Support Workers’ Satisfaction and Challenges

PSWs experience different problems alongside their diverse job roles, including low pay, stigma, unclear work roles, alienation, struggling with skill deficits, lack of training opportunities, emotional stress in helping others, and, on top of that, maintaining their personal physical and mental health wellness [ 100 , 101 ]. Researchers found that PSWs experience discrimination and prejudice from nonpeer workers, in addition to the encountered difficulties of how to manage the transition from being a patient to a PSW. As a result, high attrition rates were noted among PSWs in mental health settings [ 102 , 103 ]. Peer job satisfaction is strongly dependent on several factors [ 100 , 104 , 105 ]. Role clarity and psychological empowerment, organizational culture, and working partnership with peers were the most significant predictors of PSW job satisfaction, while professional prejudice was not perceived as a significant predictor [ 106 , 107 ]. Other studies noted that the main problems were experiencing marginalization, lack of understanding, and a sense of exclusion [ 108 - 110 ]. Payment could also contribute to the amount of satisfaction of PSWs [ 76 ], as compensation helps through facilitation and engagement motivation [ 109 ]. Nevertheless, it seems that not the payment, which ranged from US $10 to US $20 per hour, but the lack of recognition and acknowledgment are the causes for job nonsatisfaction [ 104 ].

An interesting literature review grouped these challenges and barriers facing PSWs during fulfilling their assigned roles into 6 main categories: nature of the innovation, individual professional, service user, social context, organizational context, and economic and political contexts [ 111 ].

It is evident from the abovementioned information that the PSW role is challenged at multiple levels, including at the personal, societal, and organizational levels. These challenges have a direct bearing on PSW satisfaction, and the successful integration of the PSW role into the health care system depends to a great extent on how these challenges are overcome.

Novel Technology in Peer Support Service (Online and Telephone)

Online support groups are usually conducted through bulletin boards, emails, or live chatting software [ 28 ]. Online groups are familiar with people whose illnesses are similar to SMIs or affecting the body shape that have forced them to experience embarrassment and social stigmatization [ 23 , 24 ]. Therefore, they split from the social contexts and redirect toward novel ways of help, such as PSWs and online support groups, and web-based communities provided a suitable medium for people with SMIs by following and learning from their peers on the web, which positively helped them to fight against stigma, instilling hope and gaining insight and empowerment for better health control [ 25 ]. Increasingly, social media grew as a target for individuals with SMIs, such as schizophrenia, schizoaffective disorder, or bipolar disorder, seeking advice and supporting each other [ 112 - 114 ]. For someone with SMIs, the decision to reach out and connect with others typically occurs at a time of increased instability or when facing significant life challenges [ 115 ]. In a qualitative study, popular social media, such as YouTube, appeared useful for allowing people with SMIs to feel less alone, find hope, support each other, and share personal experiences and coping strategies with day-to-day challenges of living with mental illness through listening and posting comments [ 114 ]. Mobile phone–based peer support was found to be a feasible and acceptable way to the youngsters during their pregnancy as well as in the postpartum period [ 116 ]. In addition, when coupled with frequent face-to-face meetings with PSWs and with “text for support,” it could be of high value for patients with different mental illnesses [ 117 ]. Although online peer networks actively fight against discrimination and stigma, their accessibility to diverse patients’ sectors regarding their income and ethnicity is still questionable [ 25 ].

Future of Peer Support Services

Potential new roles, such as community health workers, peer whole health coaches, peer wellness coaches, and peer navigators, have been suggested for such a workforce [ 76 ]. They are described as an “ill-defined potential new layer of professionals” [ 118 ]. Through an initiative undertaken by SAMHSA via its “Bringing Recovery Supports to Scale Technical Assistance Center Strategy,” a successful identification of abilities and critical knowledge necessarily required for PSWs who provide help and support for those recovering from mental health and substance abuse was noted [ 76 ]. At present, peer support is seen as a growing paradigm in many countries, including the United Kingdom, Canada, New Zealand, France, and the Netherlands [ 103 , 119 ]. As an evolving culture, peer support has the opportunity to forge not just mental health system change but social change as well [ 37 ]. A novel peer support system termed “Edmonton peer support system” (EPSS) is currently being tested in a randomized controlled pilot trial [ 117 ]. In this study, investigators are evaluating the effectiveness of an innovative peer support program that incorporates leadership training, mentorship, recognition, and reward systems for PSWs, coupled with automated daily supportive text messaging, which has proven effectiveness in feasibility trials involving patients with depression and alcohol use disorders [ 120 , 121 ]. Previous studies have examined the effect of PSSs in different contexts, including outpatient departments [ 122 ], emergency departments [ 53 , 54 ], community mental health clinics [ 123 , 124 ], and inpatient sites [ 125 ]. On the contrary, the EPSS study focuses on patients who have been discharged from acute care hospitals. These patients are being randomized into 1 of the 4 main groups: enrollment in a peer support system, enrollment in a peer support system plus automated daily supportive and reminder text messages, enrollment in automated daily supportive and reminder text messages alone, or treatment as usual follow-up care. The research team hypothesizes that patients who are assigned to a peer support system plus automated daily supportive and reminder text messages will show the best outcome.

Organizations may facilitate peer support through their values, actions, and oversight [ 119 ] and through a robust supervision system with available educational access, which could be the adequate path for creating a positive and risk-free environment for PSWs throughout their complex workloads [ 126 ]. On the other hand, ethics committees play essential roles in the inclusion of PSWs in applied research studies by avoiding repetition of the work of other trusted agencies and considering the ethical validity of consent procedures for peer support interventions [ 127 ].

There is an internationally growing trend to adopt PSSs within addiction and mental health services, and despite the ongoing challenges, large sections of the current literature support the inclusion of the PSWs into the mental health care workforce. The literature suggests that the benefits of PSSs impact not only the recipients of mental health services but also extend to the PSWs and the whole health care system. Although the expected benefits of PSSs might be directly measured in terms of service utilization or patient improvement indicators, this could also extend to include wellness and empowerment for PSWs, who may still be fragile, vulnerable, and in need of ongoing acknowledgment and recognition. Thus, the potential for PSSs to be embedded into routine care and the opportunities for the development of innovative models of care for addiction and mental health patients such as the EPSS, which incorporates PSSs and supportive text messaging [ 117 ], are evidently a high valued priority. However, the feasibility and maintenance of a robust PSS in health care would only be possible through collaborative efforts and ongoing support and engagement from all health care practitioners, managers, and other stakeholders.

This literature review has several limitations. First, the review is not a systematic review or meta-analysis, and as such, there were no well-defined inclusion or exclusion criteria of studies, which potentially could lead to the exclusion of some essential related studies. Second, the search was conducted in English publications only. Consequently, there is a high probability of missing critical related publications published in non-English languages. Finally, as the review depended mainly on the available literature from the aforementioned sources, which showed marked variability in their design and covered diverse ideas under the central theme, the different weights for each idea throughout the review could be noted.

Acknowledgments

This work was supported by Douglas Harding Trust Fund and Alberta Health Services.

Abbreviations

Conflicts of Interest: None declared.

• Research article
• Open access
• Published: 29 February 2024

The effectiveness, implementation, and experiences of peer support approaches for mental health: a systematic umbrella review

• Ruth E. Cooper 1   na1 ,
• Katherine R. K. Saunders 1   na1 ,
• Anna Greenburgh 2 ,
• Prisha Shah 6 ,
• Rebecca Appleton 2 ,
• Karen Machin 6 ,
• Tamar Jeynes 6 ,
• Phoebe Barnett 2 , 3 , 4 ,
• Sophie M. Allan 2 , 5 ,
• Jessica Griffiths 1 ,
• Ruth Stuart 1 ,
• Lizzie Mitchell 6 ,
• Beverley Chipp 6 ,
• Stephen Jeffreys 6 ,
• Brynmor Lloyd-Evans 2 ,
• Alan Simpson 1 , 7 &
• Sonia Johnson 2 , 8  

BMC Medicine volume  22 , Article number:  72 ( 2024 ) Cite this article

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Peer support for mental health is recommended across international policy guidance and provision. Our systematic umbrella review summarises evidence on the effectiveness, implementation, and experiences of paid peer support approaches for mental health.

We searched MEDLINE, EMBASE, PsycINFO, The Campbell Collaboration, and The Cochrane Database of Systematic Reviews (2012–2022) for reviews of paid peer support interventions for mental health. The AMSTAR2 assessed quality. Results were synthesised narratively, with implementation reported using the CFIR (Consolidated Framework for Implementation Research). The protocol was registered with PROSPERO (registration number: CRD42022362099).

We included 35 reviews (426 primary studies, n  = 95–40,927 participants): systematic reviews with ( n  = 13) or without ( n  = 13) meta-analysis, or with qualitative synthesis ( n  = 3), scoping reviews ( n  = 6). Most reviews were low or critically low (97%) quality, one review was high quality. Effectiveness was investigated in 23 reviews. Results were mixed; there was some evidence from meta-analyses that peer support may improve depression symptoms (particularly perinatal depression), self-efficacy, and recovery. Factors promoting successful implementation, investigated in 9 reviews, included adequate training and supervision, a recovery-oriented workplace, strong leadership, and a supportive and trusting workplace culture with effective collaboration. Barriers included lack of time, resources and funding, and lack of recognised peer support worker (PSW) certification. Experiences of peer support were explored in 11 reviews, with 3 overarching themes: (i) what the PSW role can bring, including recovery and improved wellbeing for service users and PSWs; (ii) confusion over the PSW role, including role ambiguity and unclear boundaries; and (iii) organisational challenges and impact, including low pay, negative non-peer staff attitudes, and lack of support and training.

Conclusions

Peer support may be effective at improving some clinical outcomes, self-efficacy, and recovery. Certain populations, e.g. perinatal populations, may especially benefit from peer support. Potential strategies to successfully implement PSWs include co-production, clearly defined PSW roles, a receptive hierarchical structure and staff, appropriate PSW and staff training with clinical and/or peer supervision alongside safeguarding. Services could benefit from clear, coproduced, setting specific implementation guidelines for PSW. PSW roles tend to be poorly defined and associations between PSW intervention content and impacts need further investigation. Future research should reflect the priorities of providers/service users involved in peer support.

Peer Review reports

Peer support in mental health care is a recovery-orientated approach delivered by individuals who have lived experience of mental health difficulties (as service users, carers, parents or supporters). Peer support workers (PSWs) are employed to draw on these experiences to support mental health service users or carers of people with mental health conditions [ 1 , 2 ]. As such, PSWs are uniquely positioned to facilitate recovery through empathic engagement with service users and their support networks. The success of peer support is thought to be based in the sharing of lived experiences and mental health knowledge and through interpersonal connection [ 3 , 4 ]. Across diagnoses, peer support may promote recovery through the modelling of coping strategies, and by providing hope and an example of recovery to those dealing with mental health difficulties [ 5 ].

Peer support has been utilised across various populations and types of service, for example in services for early intervention in psychosis [ 6 ], for people with co-occurring substance abuse and mental health difficulties [ 7 ], and in community interventions to reduce mental health inpatient admissions [ 8 ]. The format of peer support varies across services, for example it may involve one-to-one or group sessions, online or face-to-face delivery, unstructured open-ended conversations or more structured manualised support, or activities such as walking groups [ 9 , 10 ]. Peer support may be delivered by trained peer support staff or on a more ad hoc basis among peers [ 11 ]. Peer support for mental health takes place within mental health services in both statutory and voluntary sector settings [ 11 ]. Although PSWs may be paid or unpaid [ 6 , 12 ], paid roles have become increasingly available in mental health care settings [ 13 ]. Professionalising PSW roles as paid demonstrates the value of the role and appropriately rewards work done, should ensure formal training, supervision and management, and may help to clarify the boundaries of the role [ 14 ].

Service user networks and researchers in relevant fields have strongly advocated for provision of peer support [ 14 , 15 ], and peer support is now recognised and recommended across international mental health policy guidance, reflecting an increased understanding of the value of embedding lived experience support in formal mental health services [ 16 , 17 , 18 , 19 , 20 ]. In the UK, peer support is currently being expanded in the NHS [ 16 ].

There have been many reviews of the peer support literature separately evaluating the efficacy, implementation, and experiences of peer support from a variety of different perspectives (e.g. [ 21 , 22 , 23 , 24 ]). Given the numerous and sometimes inconclusive results from existing reviews on this topic, our research group, the NIHR Mental Health Policy Research Unit, agreed with policy makers in England to conduct an umbrella review of peer support to provide clinicians, policy makers and researchers with an overall assessment on the evidence available, comparing results between reviews, while taking the quality of these reviews into account [ 25 , 26 ]. The aim of this systematic umbrella review is to collate, synthesise and summarise the available evidence from published reviews to address the following research questions:

What is the effectiveness (e.g. clinical, social, functional) and cost-effectiveness of paid peer support approaches for mental health?

What influences the implementation of peer support approaches for mental health?

What are the experiences of peer support approaches for mental health (e.g. of acceptability) from the perspective of PSWs, healthcare practitioners, service users, carers?

This umbrella review was conducted by the NIHR Mental Health Policy Research Unit (MHPRU), based at King’s College London and University College London, which delivers evidence to inform government and NHS policy in England, agreeing a programme of rapid research with policymakers.

Study design and protocol

We conducted a systematic umbrella review following guidance from Fusar-Poli et al. [ 27 ] and Cochrane [ 28 ]. The review is reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) (see Additional file 1 : Appendix 1 for the PRISMA checklist) [ 29 ]. The protocol was registered with PROSPERO (registration number: CRD42022362099) [ 30 ]. One amendment was made to the protocol after registration. We amended the ‘intervention’ section to state that reviews were excluded if the majority of interventions did not meet eligibility criteria, e.g. because we found that reviews often included paid and unpaid peer support interventions and did not report results separately.

Lived experience researcher involvement

Members of the MHPRU Lived Experience Working Group (LEWG), who collectively have substantial experience of delivering or receiving peer support, contributed extensively to this review, including protocol development, study selection, data extraction, quality appraisal, data synthesis, drafting the manuscript and lived experience commentary, and attending working group meetings.

Eligibility criteria

The eligibility criteria are detailed in full in the protocol [ 30 ]. In summary, we included:

Study designs : Published, peer-reviewed systematic, scoping or realist reviews which synthesised quantitative or qualitative data (narratively or formally using, e.g. a meta-analysis or meta-synthesis) that examined outcomes or experiences relevant to our research questions.

Intervention : We defined peer support as ‘involving a person who has lived experience of mental health condition(s), or caring for those with mental health conditions, being employed to use and draw on their experiences and empathy to support service users who have mental health conditions or carers or parents of people with mental health conditions.’ Eligible peer support approaches were paid, meaning that the PSW was paid for their work, and delivered face-to-face or remotely, for people with mental health conditions or for carers of people with mental health conditions, across any mental healthcare settings. Peer support approaches were ineligible if the PSWs were not in a dedicated peer support role, if they were primarily for physical health, or automated (i.e. peer support ‘bots’ or avatars). We excluded reviews where over 50% of primary studies in the review did not meet eligibility criteria, e.g. if the majority of people delivering the interventions were unpaid.

Population : Children, young people and adults with a mental health condition (including substance use disorders), carers, paid PSWs and mental healthcare practitioners working alongside PSWs. We excluded service users with a primary diagnosis of an organic mental disorder (e.g. dementia), neurodevelopmental disorders, acquired cognitive impairment and adjustment disorders.

Outcome measures : Included reviews reported outcomes or data on at least one of the following peer support related outcomes that addressed our research questions: (i) clinical outcomes, (ii) economic or cost-effectiveness, (iii) recovery outcomes, e.g. hope, empowerment, goal-attainment, quality of life, (iv) social outcomes, (v) implementation outcomes and barriers and facilitators to implementation, (vi) experiences of delivering, receiving or working alongside peer support and (vii) theories of what works for whom in peer support.

Information sources and search strategy

We combined terms for peer support, reviews and mental health conditions using Boolean operators (AND, OR). We searched the following databases: MEDLINE, EMBASE, PsycINFO, The Campbell Collaboration and The Cochrane Database of Systematic Reviews (see Additional file 1 : Appendix 2 for full search strategy). Searches were run from January 2012 to November 2022 as these reviews will include primary research published before 2012 [ 31 ]. There was no time limit for the primary papers in the included reviews. We had no language restrictions.

Selection process

Reviewers (KS, RC, JG, RS, RA, KM, PS, SA) screened titles and abstracts, and subsequently full texts. To ensure consistent application of eligibility criteria all reviewers initially independently screened the same ten titles and abstracts and discussed inclusion/exclusion. The remaining titles and abstracts were then screened. Records were double screened blind by two reviewers at both the title and abstract (94% agreement) and full text (86% agreement) stages. All disagreements were resolved through discussion with the study team.

Data extraction

Data extraction was completed in Microsoft Excel by the review team (RC, KS, KM, PS, JG, RS, PB, RA). The data used in the paper were checked by another member of the review team. The extracted data included basic information about reviews (e.g. number of included studies, number of participants, review type, aim/objectives), basic information about primary studies (e.g. references, designs), search strategy (e.g. databases searched, eligibility criteria), population (e.g. gender, age), peer support approach (e.g. peer support type and description), type of comparator, additional information (e.g. quality appraisal methods, review author conclusions), primary and secondary outcomes of systematic review or qualitative results.

Quality appraisal of included reviews

The quality of included reviews was independently assessed by reviewers (RC, KS, KM, PS, JG, RS, PB, RA) using the AMSTAR 2 (A MeaSurement Tool to Assess systematic Reviews), a 16-point tool for assessment of the methodological quality of systematic reviews [ 32 ]. We adapted the AMSTAR 2 to apply for scoping reviews and systematic reviews of qualitative data (described in full in Additional file 1 : Appendix 3). The following questions were adapted: (1) PICO criteria, (2) Protocol requirements, (8) Detail of included studies, (9) Risk of Bias requirement. Two reviewers (KS, AG) 100% double-scored reviews blind with any outstanding disagreements resolved through discussion between AG, KS, and RC. Overall ratings for each study were calculated according to guidance [ 32 ], based on 7 critical domains and 6 non-critical domains within the AMSTAR 2 tool. Studies with no or one non-critical weakness and no critical flaws were rated as high quality. Studies with more than one non-critical weakness and no critical weaknesses were rated as moderate quality. Studies with one critical flaw irrespective of non-critical weaknesses were rated as low quality, and those with more than one critical flaw irrespective of non-critical weaknesses were rated as critically low quality. The AMSTAR 2 guidance [ 32 ] states that reviews of critically low quality should not be relied on for comprehensive and accurate summaries of the literature.

Synthesis methods

Rq 1: what is the effectiveness (e.g. clinical, social, functional) and cost-effectiveness of paid peer support approaches for mental health.

Data were tabulated and summarised narratively by two researchers (KS, AG); effectiveness meta-analysis data calculated from two or more studies were tabulated separately from non-meta-analysis effectiveness outcomes. Review outcomes were similar, but not similar enough to combine meaningfully in a meta-analysis. Effect sizes (with 95% CIs and p -values) were reported along with I 2 statistic (with 95% CIs, p -values, χ 2 , and degrees of freedom) where available. We did not tabulate data for subgroup analyses.

RQ 2: What influences the implementation of peer support approaches for mental health?

Outcomes were tabulated according to the main domains in the Consolidated Framework for Implementation Research (CFIR) [ 33 ]. The CFIR provides a comprehensive framework, composed of 5 domains, associated with the effective implementation of interventions [ 33 ]. The 5 domains are as follows: Innovation (the ‘thing’ being implemented); Outer setting (the setting in which the inner setting exists, e.g. hospital system); Inner setting (the setting in which the innovation is implemented, e.g. hospital); Individuals (the roles and characteristics of individuals); Implementation process (the activities and strategies used to implement the innovation) [ 33 ]. Synthesis was conducted using a collaborative process involving one member of the study team (RA) and one lived experience researcher (PS).

RQ 3: What are the experiences of peer support approaches for mental health (e.g. of acceptability) from the perspective of PSWs, healthcare practitioners, service users and carers?

Experiences were synthesised narratively, by three researchers, including two lived experience researchers (TJ, KM, RC) [ 34 ]. Themes from reviews which were identified as addressing research question 3 were extracted and similar themes across the reviews were grouped together. Each group was accounted for using an existing theme from one or more of the reviews or if this was not possible a new theme was developed. Three overarching themes were identified through iterative scrutiny of the data and discussion between TJ, KM, and RC. A summary of the common themes across the reviews, grouped under the three overarching themes, was then developed, including highlighting contrasting findings.

Study selection

The search strategy identified 777 references to be screened (a further 2 papers were identified through other methods); 93 full text articles were assessed for eligibility with 57 excluded (see Additional file 1 : Appendix 4 for reasons for exclusion). Thirty-five reviews (reported in 36 papers) were included (see Fig.  1 ).

PRISMA flow diagram [ 29 ]

Characteristics of included reviews

Review characteristics are detailed in Table  1 . Of the 35 included reviews, 13 were systematic reviews with meta-analyses, 13 were systematic reviews without meta-analyses, 3 were systematic reviews with a qualitative synthesis and 6 were scoping reviews. The individual reviews included between 95 and 40,927 participants; 6 reviews did not report the number of participants. For reviews where the population were service users, almost all were categorised as adults with mental health problems. Thirteen reviews specified that participants had severe mental illness (SMI) diagnoses [ 1 , 21 , 22 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 ], six reviews explicitly included studies with participants accessing mental health services [ 22 , 37 , 38 , 43 , 45 ] [ 46 ], three reviews were conducted in perinatal populations [ 47 , 48 , 49 ], three reviews included participants with any/common mental health conditions [ 50 , 51 , 52 ], four reviews included participants with substance use disorders [ 1 , 38 , 53 , 54 ], two reviews included participants with eating disorders [ 55 , 56 ], one included people experiencing suicidality [ 57 ] and one included articles on peer support for crisis management [ 58 ]. The samples in the remaining reviews were PSWs and various stakeholders (e.g. non-peer staff, service users) [ 23 , 24 , 34 , 59 , 60 , 61 , 62 , 63 , 64 ]. Most reviews included interventions involving any form of peer support, individual, group or combined, although three reviews looked at group peer support alone [ 35 , 43 , 49 ], and three reviews looked at individual peer support alone [ 1 , 40 , 45 ]. Reviews looked at peer support delivered in-person, online or over the phone, and surveyed a range of approaches including both structured and unstructured peer support (see Table  1 ). The reviews included 426 primary studies. We assessed study overlap; most primary studies ( n  = 300) were only included in one review; however, many primary studies were included twice ( n  = 72), three times ( n  = 18) to a maximum of nine times ( n  = 1) (see Additional file 1 : Appendix 5 for overlapping studies). Only 1 review reported that people with lived experience were involved in the review [ 57 ]. Only 2 reviews assessed certainty of evidence (using GRADE) [ 21 , 22 ].

Most reviews were appraised as low or critically low (97%) quality and one review was appraised as high quality. The most common weaknesses were in critical domains concerning registering protocols before commencement of the review (21 studies), justification of excluding individual studies (28 studies) and considering risk of bias when interpreting results (13 studies). Reviews without meta-analyses were not scored in the critical domains assessing meta-analytical method or publication bias. There were 13 studies with meta-analyses assessed in these two domains: two of these exhibited one critical weakness and two exhibited two critical weaknesses. As scoping reviews are intended to provide overviews of existing literature regardless of risk of bias [ 65 ], scoping reviews were not scored in the critical domain concerning risk of bias assessment techniques (see Additional file 1 : Appendix 3 for adjustments to quality appraisal for scoping and qualitative reviews). Of the 29 reviews that were eligible to be scored in this domain, 10 exhibited a critical weakness. The review eliciting high confidence was a Cochrane review [ 21 ]. No reviews were rated as moderate. AMSTAR 2 ratings are detailed in Table  1 and in full in Additional file 1 : Appendix 3.

Results of synthesis

Rq1: what is the effectiveness (e.g. clinical, social, functional) and cost-effectiveness of paid peer support approaches for mental health.

Effectiveness outcomes were reported in 23 reviews (66% of total). A wide variety of clinical, recovery and psychosocial effectiveness outcomes were reported across both meta-analysis [ 21 , 22 , 37 , 40 , 41 , 42 , 43 , 44 , 45 , 47 , 48 , 51 , 52 ] and narrative results [ 1 , 21 , 22 , 35 , 36 , 37 , 38 , 40 , 41 , 42 , 43 , 44 , 48 , 50 , 51 , 53 , 54 , 56 , 57 , 58 , 60 ]. Comparator groups also varied across the primary studies included in the reviews, including Treatment as Usual (TaU), active controls (e.g. a comparable standard treatment) and waitlist control groups.

All outcomes except for one (family or carer use of formal community support services; [ 44 ]) were service user outcomes, rather than carer, staff or PSW outcomes. Outcomes from systematic reviews with meta-analysis are reported in Tables  2 , 3 and 4 . Effectiveness results from reviews not including meta-analysis are summarised at the end of this section and reported in full in Additional file 1 : Appendix 6. Evidence was heterogenous across all outcomes and reviews, with many analyses reporting no effect. In the meta-analysis results, there was often notable heterogeneity. There was limited data on cost and cost-effectiveness, but the evidence available from three systematic reviews without meta-analyses (See Additional file 1 : Appendix 6) suggested that peer support interventions were low cost and cost-saving [ 38 , 48 , 50 ].

Results from meta-analyses

Clinical outcomes.

For depression outcomes, evidence from two reviews with meta-analyses suggested that peer support is effective in improving perinatal depression [ 47 , 48 ]. Three reviews of peer support for adults and adolescents with mental health problems including those with SMI diagnoses reported no effect on depression post-intervention [ 22 , 35 , 43 ], where two of these reviews looked at group-based peer support alone [ 35 , 43 ]. Two of these reviews reported follow-up results; one review of group peer support for adults with any mental health condition continued to find no effect at 3–6 months follow-up [ 35 ], while the other involving adults with SMI reported improvements in depression and anxiety at 6 months follow-up, despite reporting no effect at post-intervention [ 22 ]. One review [ 52 ] measured clinical recovery in adults with any mental health diagnosis, reporting improvements post-intervention and at 6–9-month follow-up, but no improvement at 12–18-month follow-up.

Most evidence regarding mental health symptom severity among adults and adolescents with mental health diagnoses or who were using mental health services suggested no effect [ 22 , 35 , 41 , 42 , 43 , 44 ], other than for perinatal depression as previously summarised. One review [ 40 ] of individual peer support for adults with primarily SMI diagnoses reported improvements in symptom severity, while another involving adults with SMI [ 44 ] reported symptom improvements following family-led peer support, but no improvement following individual-led peer support. Results for service use varied depending on the measure, for example, peer support was associated with reduced risk of hospitalisation [ 44 ], including after a follow-up period [ 45 ], but no effect was found regarding length of stay [ 41 , 42 ].

All reviews providing meta-analytic evidence relevant to this question were rated low or critically low quality, except from one high-quality review [ 21 ] which found no effect of peer support on patient activation between 1 and 6 months follow-up (a person’s perceived ability to manage their illness and their approach to healthcare) in adults with schizophrenia diagnoses or similar SMI.

Recovery outcomes

Of the seven reviews with meta-analyses reporting data on overall self-reported recovery, five reported improvements in recovery in adults with mental health diagnoses including SMI [ 22 , 35 , 40 , 44 , 45 ]. Two studies found effects for individual peer support interventions alone [ 40 , 45 ], and one reported an effect for group-based peer support alone [ 35 ]. Only two reviews reported no effect [ 21 , 43 ], where one included studies of adults with SMI in both individual and group-based peer support [ 21 ], and the other involved studies with adults and adolescents with any mental health problem in group-based peer support alone [ 43 ].

Three reviews reported follow-up data showing continued improvements for adults with mental health diagnoses including SMI at follow-ups of 6 months [ 22 ], 3–6 months [ 35 ] and 12–18 months [ 45 ], the former and the latter reviewing individual and group peer support, and the second focussing on group peer support alone. One further review reported no improvements at medium-term follow-up (1–6 months) [ 21 ]. One review of adults with any mental health diagnosis identified improvements in personal recovery post-intervention, but not at 6–9 or 12–18 months follow-up, and found no improvements in functional recovery post-intervention or at 12–18 months follow-up, but did report improvements at 6–9 months follow-up [ 52 ].

All reviews providing meta-analytic evidence for these outcomes were rated as critically low or low quality, except for one [ 21 ] which was rated high quality. Based on evidence from three studies, this latter review [ 21 ] found no effect of peer support on recovery in the medium term for adults with schizophrenia diagnoses or similar SMI.

Psychosocial outcomes

Evidence regarding hope or hopefulness was mixed. Four reviews with meta-analyses suggested that peer support resulted in improvements in adults with SMI [ 22 , 37 , 40 , 44 ], where one of these studies looked at individual peer support alone [ 40 ] and the rest included both individual and group peer support. However, three reviews of studies including SMI and mixed mental health diagnoses samples reported no effect [ 21 , 35 , 43 ], where two of these reviews focussed on group-based peer support alone [ 35 , 43 ]. One study [ 22 ] followed up adults with SMI and those using secondary MH services at 3–6 months and found continued improvements in hope. However, another review investigating longer-term outcomes (over 6 months) in adults with SMI found no effect [ 21 ].

Improvements in empowerment were evidenced by two reviews with meta-analyses [ 40 , 51 ] of studies involving adults with any mental health diagnosis including SMI. No effects were reported in four reviews [ 22 , 35 , 43 , 44 ]. One of the meta-analyses finding positive effects of peer support on empowerment looked at individual peer support alone [ 40 ], whereas two of the meta-analyses with no effect solely involved group-based peer support [ 35 , 43 ]. Three studies reported follow-up data. Two showed improvements at 6 months in adults with SMI [ 22 ] and at 6–12 months follow-up among adults using mental health services with any diagnoses [ 45 ]. The other showed no improvements from group-based peer support only in adults with mental health diagnoses including SMI between 3 weeks and 6 months follow-up [ 35 ].

Quality of life reportedly improved in two reviews with meta-analyses [ 37 , 44 ] of studies involving adults with SMI, while there was no evidence of improvement in one other with an SMI sample [ 22 ]. The two studies which reported follow-up data continued to find no effect [ 22 , 45 ].

There were improvements in self-efficacy in adults with any mental health problem in all three reviews with meta-analyses reporting this outcome [ 43 , 44 , 51 ]. Decreases in self-stigma and stigma-related stress in adults and adolescents with any mental health problem were found by one review with meta-analysis of group-based peer support [ 43 ]. There was no evidence for peer support improving satisfaction with care [ 22 , 41 , 42 , 44 , 45 ] or relational outcomes (including social support and network) and building relationships (both personally and with staff) [ 41 , 42 , 44 , 45 ].

All reviews providing meta-analytic evidence for these outcomes were rated as critically low or low quality, except one high-quality review [ 21 ] which found no effect of peer support on hope in adults with schizophrenia diagnoses or similar SMI in the medium or long term.

Summary of results from systematic reviews without meta-analysis

Effectiveness results from systematic reviews without meta-analyses are tabulated in full in Additional file 1 : Appendix 6. These reviews presented mixed results pertaining to clinical outcomes including depression, anxiety, eating disorder pathology, and psychosis. However, two scoping reviews reported evidence of peer support in improving suicidal ideation [ 57 , 58 ]. Evidence was deemed inconclusive regarding the impact of peer support on indicators of service use, where three reviews failed to find evidence for peer support [ 21 , 22 , 41 , 42 ], three reported mixed results [ 1 , 38 , 54 ], and one found evidence for improvements associated with peer support [ 36 ]. More consistent evidence was found indicating peer support improves recovery outcomes [ 1 , 36 , 38 , 40 , 44 , 53 ]. For most psychosocial outcomes, systematic reviews presented mixed evidence, for example different effects were found by one high-quality review for empowerment, hope and self-efficacy, depending on what measures were used [ 21 ]. Despite mixed effects being reported overall for the impact of peer support on satisfaction with care, one review cited some possible associated moderating factors such as the number of conversations had between peer supporter and recipient [ 48 ]. Evidence was marginally less mixed for relational outcomes, such as strength of interpersonal relationships and sense of community, as the majority (three) of relevant reviews found evidence in support of peer support [ 21 , 38 , 58 ], although one review found this did not persist long term [ 21 ].

Implementation was investigated in nine reviews [ 23 , 24 , 36 , 39 , 46 , 50 , 55 , 59 , 62 ]. Table 5 shows an overview of implementation outcomes by CFIR domain [ 33 ]. All reviews relevant to this research question were rated as critically low quality based on the adapted AMSTAR 2 rating scale (see Additional file 1 : Appendix 3).

Studies reported generally high acceptability and feasibility of PSW-led interventions [ 36 , 39 , 46 , 50 ]. When planning a peer-led service, co-producing the design of peer support provision with the community and stakeholders was found to be key [ 59 ].

Outer setting

The existence of national policy and funding provisions for employing and retaining PSWs facilitated PSW-led care [ 39 , 46 , 59 ], as did integration of interventions within existing healthcare systems [ 50 ]. However, barriers included power hierarchies [ 39 ], difficulties incorporating PSWs in medical mental health care models [ 24 , 39 , 46 ], interference of work with welfare benefits [ 62 ] and a lack of recognised PSW certification [ 62 ].

Inner setting

A workplace culture emphasising recovery-orientated practice [ 24 , 59 ], and organisational openness and readiness to employ PSWs [ 39 ], was important. Facilitators included strong leadership and support at the highest level [ 46 ], and flexible and understanding employers, especially in times of crisis [ 59 ]. A key facilitator was a supportive, accepting and trusting workplace culture where PSWs occupy a central position and fit in well with other staff members [ 24 ]. A trusting culture allowed the management of risk in a psychologically safe space [ 59 ]; effective communication and collaboration between PSWs and other workers facilitated this [ 24 ], while stigmatising staff attitudes were a barrier [ 62 ]. It was easier to implement PSWs in a more collaborative and less hierarchical service [ 59 ]. There were practical facilitators and barriers for PSWs also, such as access to desk space or administrative data [ 24 , 46 ], time restraints, high caseloads [ 23 , 24 ] and insufficient funding for PSW role [ 24 , 50 ].

Individuals

The professionalisation and legitimisation of the PSW role was seen as important, with associated performance standards and/or a code of ethics [ 24 ] which was linked to rigorous recruitment practices, ensuring parity in the recruitment of PSWs and other staff [ 46 ]. A further facilitator was high levels of competency among peer-counsellors when delivering interventions and having relevant skills and knowledge, e.g. mental health conditions [ 50 ]. PSWs were often required to have recovered from their mental health difficulties [ 55 ] and be able to use their coping skills and resilience to avoid potential negative impacts on their wellbeing [ 24 ]. PSWs reported a conflicted sense of identity between being a ‘peer’ with experience of mental health problems and a ‘professional’ as a barrier to their work [ 62 ]. The use of champions and implementation leaders to drive the set up and maintenance of PSW interventions was reported as a facilitator [ 46 ], as was staff willingness and ability to work with PSWs and accept them as part of the service [ 24 ].

Implementation process

Studies emphasised the importance of comprehensive training for PSWs delivered both prior to starting work and on an ongoing basis, alongside regular clinical supervision [ 24 , 46 , 50 , 55 ] supporting the management of any problems encountered [ 59 ]. PSW roles should be clearly defined [ 24 , 62 ] and training should also be delivered to other members of staff to help them work effectively with PSWs [ 46 ]. Establishing sustainable models of cost and supervision from the outset was key for the longevity of PSW [ 50 ].

Experiences of both the benefits and challenges of peer support were reported in 11 reviews [ 23 , 34 , 39 , 42 , 46 , 49 , 55 , 60 , 61 , 63 , 64 ] from a range of perspectives: PSWs [ 23 , 34 , 39 , 55 , 61 ], service users [ 39 , 55 , 61 ], non-peer staff [ 61 ], peer support group members [ 49 ], and mixed samples which consisted of combinations of PSWs, service users, non-peer staff, carers, mental health organisations, policy makers and peer programme developers [ 23 , 39 , 42 , 46 , 55 , 60 , 61 , 63 , 64 ]. In one review, it was unclear whose perspective was being presented [ 46 ], although this review only contributed to one theme. All reviews providing evidence for this research question were rated as critically low quality based on the adapted AMSTAR 2 rating scale (see Additional file 1 : Appendix 3). We identified 3 overarching themes: (i) what the PSW role can bring, (ii) confusion over the PSW role and (iii) organisational challenges and impact. Table 6 gives an overview of the overarching themes and subthemes (with more detail in Additional file 1 : Appendix 7). The following provides an overview of each overarching theme from the perspective of the different samples (i.e. PSWs, service users, mixed samples).

What the PSW role can bring

Perspective of psws.

PSWs experienced improved wellness and recovery from working in the role, reporting increased self-esteem, personal growth, and social networks [ 23 , 34 , 55 , 61 ]. They benefited in a variety of ways, e.g. the role provided a route back into employment, improving functioning and social inclusion, and allowed them to learn more about their own mental health [ 23 , 34 ]. PSWs also reported increased self-acceptance as they no longer had to hide their mental health issues [ 34 ]. The role was therefore often reported to be mutually beneficial for PSWs and service users [ 34 , 55 ]. PSWs felt it was important that they were role models for service users, being ‘the evidence of recovery’ [ 34 ]. However, working as a PSW could also have a negative impact on the PSWs’ wellbeing and recovery [ 23 , 34 ]. Reasons for this included the role reminding them of their mental health condition and the ‘sick’ label staying with them [ 23 ].

Perspective of service users

For service users, PSWs could be role models, giving them hope of recovery [ 39 , 55 , 61 ]. PSW support normalised and de-medicalised service user experiences [ 55 ]. Lack of judgement from PSWs reduced feelings of self-stigma for service users [ 55 ]. Service users felt empowered by and valued gaining experiential knowledge from PSWs, perceiving them to be more insightful than non-peer staff, and trusting their services [ 39 ]. Service users also built rapport more easily with PSWs than non-peer staff, feeling they were more approachable and had greater empathy than non-peer staff [ 39 , 61 ]. However, some service users reported that PSWs are not role models and found it challenging to view them as professionals or fully trust their knowledge, due to their lack of training and concerns about their mental health history [ 39 , 61 ].

Perspective of non-peer staff

From working with PSWs, non-peer staff developed increased empathy towards service users and a belief in recovery [ 61 ].

Perspective of peer support group members

Forming relationships in peer support groups and having their experiences validated by others was valuable for recovery [ 49 ]. However, group members could feel isolated when other members’ experiences contrasted with their own [ 49 ].

Perspective of mixed samples

PSWs were perceived to be role models, providing valuable support to service users and giving them hope of recovery [ 60 , 64 ]. Working as a PSW could enable service users to find a role in the community, beyond the identity of being a ‘patient’ [ 61 ]. PSWs could build trust-based pathways to function as a bridge between service users and non-peer staff [ 64 ]. Within teams, working with PSWs could improve recovery-oriented care and PSWs carried out various roles, such as providing psychosocial support, advocating for service users, providing insights based on their lived experiences [ 64 ]. For mental health organisations, PSW roles decreased stigma towards mental health problems and set a positive example [ 61 ]. However, there were fears that the PSWs’ mental health condition could impact the provided support, such as increased PSW absenteeism which could increase non-peer staff caseloads and concerns that service users’ and PSWs’ could experience distress due to exposure to difficult (‘triggering’) content [ 42 , 55 , 60 ]. PSWs experienced pressure due to the perception that they were pioneers, leading to expectations, e.g. failure could reduce future PSW opportunities [ 64 ]. There was also concern that PSWs lacked mental health knowledge, beyond their own experience [ 64 ].

Confusion over the PSW role

A lack of clarity about the PSW job description led PSWs to feel the role was undervalued and tokenistic and meant they felt confused in their role. This impacted their perception of competence which affected their recovery and led to uncertainty in their responsibilities with service users [ 23 , 34 ]. PSWs also found the transition from service user to PSW and knowing where to draw the line between friend and service provider to be challenging [ 23 , 61 ]. Linked to this, their dual identity as a service user and provider could be a source of stress. For example, it meant they could closely connect with service users who had similar difficulties to their own, but this could also be triggering and lead to a recurrence of the PSWs’ own mental health issues [ 34 ]. PSWs expressed varying views on disclosing their recovery story [ 34 , 39 ]. For some, sharing elements of their story was linked to their own personal recovery [ 34 ]. However, other PSWs felt fearful of disclosure, e.g. they were concerned about being labelled ‘mentally ill’ and service users not trusting them [ 39 ].

A lack of clarity on the PSW role could lead service users to view the role as informal, leading to negative perceptions of the PSW services. Perceptions of tokenism of peer support could lead to the content of the PSW intervention ‘feeling irrelevant’ [ 39 ].

PSWs and non-peer staff found the PSW role to be ambiguous, e.g. the role was not clearly defined [ 63 ] and job descriptions were ‘vague’ [ 64 ]. Although this gave flexibility to define the role [ 64 ], it also led to challenges. Some PSWs felt they were expected to develop the role over time and received insufficient training, which hampered service delivery and could result in perceptions that PSWs were tokenistic [ 42 , 63 , 64 ]. Uncertainty about the role also led to a lack of support from non-peer staff [ 63 ]. Relatedly, there was confusion for PSWs over when/with whom to disclose their lived experience [ 63 , 64 ]. Some PSWs felt vulnerable and were reluctant to disclose, but disclosure could build trust with service users, enabled PSWs to be recovery role models, and could educate non-peer staff on alternative views [ 63 , 64 ]. Disclosure was also felt to require discretion when fitting with professional relationships. However, ‘professionalisation’ of PSWs may not challenge the existing boundaries (e.g. traditional hospital-based boundaries which could make it difficult for the sharing of lived experience to be valuable), when challenging these boundaries could change culture [ 63 , 64 ]. The transition for PSWs from patient to staff was challenging, e.g. non-peer staff were concerned about the PSW becoming unwell, making PSWs feel like they are being treated like patients [ 63 , 64 ]. There were issues around boundaries, including whether PSWs should relate to service users as friends or service users [ 63 ].

Organisational challenges and impact

PSWs experienced a lack of support and training for their role, potentially related to unclear job descriptions, and insufficient supervision [ 23 , 34 ]. This meant that PSWs struggled to develop the skills for their roles, including to work with service users with more complex needs than their own experiences [ 23 ]. Although there were some contrasting views, PSWs were concerned that they received low pay which made them feel that they were not valued, and they perceived themselves to be ‘cheap labour’ [ 23 , 34 , 61 ]. Some PSWs felt accepted in their teams however others experienced negative and rejecting non-peer staff attitudes [ 23 , 34 , 61 ]. For example, PSWs reported not being invited to social events and being treated like patients [ 61 ]. Consequently, some PSWs felt excluded, that their roles were tokenistic and experienced self-stigma [ 23 , 34 ]. PSWs as part of the newer recovery model reported challenges around integrating into traditional treatment models, e.g. where doctors spent the least time with service users but held the majority of power and decision making for service users. PSWs were expected to contest the traditional treatment model in support of a recovery focus, e.g. by their presence or in some cases being openly challenging, and this clash between old and new treatment models could lead to friction [ 23 ].

There was a fear that ‘cheap labour’ provided by PSWs may lead to fewer non-peer staff positions [ 61 ].

PSWs often received low pay, which led to role dissatisfaction for PSWs, suggesting the job was tokenistic or the role was unclear [ 63 , 64 ]. One reason for low pay was due to PSWs not requiring certification (i.e. specific qualifications, which e.g. a social worker would require) [ 63 ]. Some PSWs were positive about certification but others felt it could conflict with the grassroots ethos of peer support. However, there was the view that lived experience was not solely sufficient to work in interprofessional teams [ 64 ]. Despite this, supervision and support were often not offered to PSWs leading to risks [ 60 , 64 ].

There were challenges in PSW relationships with non-peer staff which could lead to a lack of support and hostility from non-peer staff. Non-peer staff felt threatened that they may be replaced by PSWs [ 64 ], were uneasy about working with people they previously treated [ 46 ], were concerned about the effectiveness of peer support [ 39 ], and felt expectations to support PSWs, increasing their workload [ 42 ]. This undermined the role of PSWs, e.g. they were subsequently given fewer responsibilities [ 39 ]. For PSWs, they wanted to challenge stigma by taking on more responsibility but high, varying workloads could jeopardise relationships with non-peer staff and team hierarchies hindered their ability to challenge clinically dominant ways of thinking [ 64 ].

A final theme was the perception that service users should be able to choose among PSWs as service providers [ 60 ].

Summary of key findings

An overview and summary of the key findings for each research question is presented in Table  7 .

Key findings

Our umbrella review of 35 reviews explored the effectiveness, implementation and experiences of peer support for mental health.

Effectiveness was reported in 23 reviews. Many reviews reporting effectiveness data reported no effect of peer support on a range of outcomes, mirroring the findings from other reviews [ 9 , 66 ] including those focusing on other types of peer support (e.g. online peer support for young people) [ 67 ]. However, there was consistent evidence from meta-analyses that peer support may improve the clinical outcomes of perinatal depression and risk of hospitalisation of adults with severe mental illness, as well as recovery outcomes, and self-efficacy and stigma-related outcomes. Mixed meta-analytic results were found for the clinical outcomes of overall psychiatric symptoms in adults with SMI, psychosis symptoms, length of hospital stay and patient activation, and for psychosocial outcomes such as hope, empowerment, and quality of life. There was no meta-analytic evidence for improvements in relational support. Evidence from systematic reviews without meta-analysis similarly gave a mixed picture regarding psychosocial and clinical outcomes, but indicated more consistent evidence that peer support has a positive impact on recovery, suicidal ideation, and, to some degree, satisfaction with care.

Many possible sources of heterogeneity across the included reviews could contribute to the mixed findings in this study, such as low-quality methodologies, differences in the populations included, and poor specification of peer support roles or the content of interventions delivered. One important potential contributor to our mixed results is that the primary studies contributing to the included reviews often varied in the type of control groups they considered, for example studies with treatment as usual, active controls and waitlist controls were often reviewed within the same paper. As such, it was not possible to determine whether peer support is effective in comparison to certain types of care provision but not others. In a similar vein, we could not perform subgroup analysis to determine whether specific forms of peer support are more effective on certain populations as most reviews with meta-analyses involved a combination of different formats and a range of participant groups. Nevertheless, there was some indication that differences in the format of peer support may impact its effectiveness on empowerment, as the two meta-analyses involving individual peer support alone found a positive effect on empowerment, but the two looking at group-based peer support alone did not. However, further research is needed to adequately address such questions.

Although this overview of quantitative evidence does not give unequivocal support for peer support on a variety of outcomes, the mixed results must be understood not only in the context of heterogeneity of the quantitative research conducted thus far, but with regard to the qualitative evidence documenting strong support for this intervention (as discussed in more detail below). Given that the implementation of peer support in mental health services is still relatively rare and highly variable, many of the trials conducted thus far may have tested peer support in environments where it is not fully embedded in the organisation and culture. Indeed, peer support may have positive impacts on the operation of mental health services that have not been measured as quantitative outcomes in existing trials—such as a stronger culture of person-centred care. More consistent quantitative results demonstrating the benefit of peer support may increasingly emerge as it becomes better integrated in the mental health care system.

We identified several factors reported to be important for the successful implementation of peer support, which were summarised and structured using the CFIR. These factors included adequate training and supervision for PSWs, a recovery-oriented workplace structure, strong leadership and a supportive and trusting workplace culture with effective collaboration between PSWs and non-peer staff. Barriers to peer support being implemented effectively included a lack of time, resources, and appropriate funding, and a lack of recognised PSW certification. Policy, research and campaign groups have advocated implementation approaches in line with these findings, for example, ImROC (implementing Recovery through Organisational Change) [ 14 , 68 ], who support peer support implementation globally and international competence frameworks from New Zealand [ 69 , 70 ], outline recovery focus as a core principle of peer support and emphasise the importance of training and ongoing professional development; peer support practice guidelines in the USA outline the importance of and give guidelines for supervision [ 71 ]. Formalised career pathways for PSWs [ 72 ] may help to address some of the identified barriers to effective implementation of peer support work, although these are still early in their development [ 68 ].

Experiences of peer support were from a range of perspectives (e.g. PSWs, service users, non-peer staff) and were organised under three main themes. The benefits of peer support for PSWs, service users and non-peer staff were expressed in many reviews; however, there were also conflicting and challenging experiences of the role. The mental health experience of PSWs was viewed as valuable, but also subject to some stigmatising views. For PSWs, the role could improve their personal wellness and recovery, providing a route back into employment and improving functioning, and provide service users with role models of recovery. The reciprocal benefits of peer support have also been highlighted as an advantage of peer support in resources developed by NHS England [ 19 ]. However, PSWs reported the ‘sick’ label stayed with them in the role, with non-peer staff at times concerned that PSWs mental health would impact their work, and some service users reported that they found it challenging to trust PSWs knowledge due to their lack of training and mental health history. A key experience, which became the core of our second theme, was the ambiguity of the PSW job description, including lack of clarity over boundaries with service users and when to disclose PSWs’ personal experiences. This ambiguity meant that the role was flexible, but also led to the perception that it was tokenistic and left PSWs feeling confused which impacted their own recovery. IMROC recommend the prioritisation of clear roles when implementing peer support [ 68 ]. Professional accreditation can counter the view of peer support as tokenistic, e.g. the UK Peer Support Competence Framework outlined by the Royal College of Psychiatrists [ 73 ] and the Canadian Peer support Accreditation and Certification, a national standard endorsing peer support work as a valuable career, developed in 2017 by PSWs themselves [ 74 ]. The final theme ‘organisational challenges and impact’ included experiences such as PSWs receiving inadequate support, training and supervision, and receiving low pay, leaving them feeling undervalued. Some non-peer staff attitudes were also a reported issue; while some PSWs felt accepted within teams, others experienced negative and rejecting non-peer staff attitudes, such as being treated as patients and not being invited to staff social events. Organisations should prepare, structurally and culturally, for the introduction of PSWs in order to ensure PSW wellbeing and reduce the risk of absences due to sickness [ 68 , 75 ].

Strengths and limitations

We conducted a comprehensive search of several relevant databases and identified a large number of reviews for inclusion, providing the first detailed summary of review findings relating to effectiveness, implementation and experiences of peer support. We also had consistent involvement of researchers with lived experience of mental health and peer support delivery and receipt throughout the design, data screening and extraction, analysis and synthesis, and manuscript drafting for this paper, which allowed lived experience priorities and experiences to guide our approaches to data and our decision making throughout.

We aimed to focus our review on paid peer support; however, this information was underreported in the reviews, and even when reported, interventions were often grouped with peer support interventions that did not fully meet our eligibility criteria (e.g. were unpaid). We also synthesised data from studies where payment status of PSWs was ambiguous, i.e. not reported. This limits our ability to draw firm conclusions around paid peer support specifically, as a significant portion of the data synthesised was from studies investigating unpaid or voluntary peer support. Another limitation was the lack of involvement of people with lived experience in the included reviews, with involvement reported in only one review [ 57 ]. Given the service user-led origins of peer support, future reviews should ensure involvement of people with lived experience. This is addressed in more detail later in this paper. Most included reviews were appraised by the AMSTAR 2 as low or critically low (97%) quality with only one review appraised as high quality. Although the low quality of reviews is a limitation, we aimed to report an overview of all current evidence for peer support to inform policy makers and healthcare practitioners, therefore to maximise the evidence base, we synthesised the reviews scored as ‘critically low quality’. Our ratings are also in line with a prior umbrella review of peer support which rated 87% of reviews as critically low quality and the remainder as low quality, but reported outcomes from all reviews [ 66 ].

Beyond the aforementioned limitations regarding variation in studies within each review, there is also a loss of granular detail through the umbrella review process of summarising data across reviews, which themselves contain many studies which have been summarised. The person-centred nature of peer support may mean that there are meaningful outcomes for the service user which are not easily captured in standard outcome measurement tools or recognised as clinically significant. Variation in peer support roles across studies may have contributed to the contradictions in our findings for RQ3, e.g. the challenges around PSW roles being ambiguous, but also the reported benefits of a flexible role.

A strength of our review was our broad inclusion criteria, for example, for qualitative data on experiences of peer support we reported data from the perspectives of service users, non-peer staff and PSWs. Though some data was reported separately by role, there were studies where experiences were reported together, and these perspectives were difficult to disentangle. Finally, we did not conduct a formal meta-synthesis of the qualitative experiences data; therefore, some detail may have been missed.

Implications for practice

Peer support may be effective at improving some clinical outcomes, self-efficacy and recovery outcomes for some people and could augment the standard service range. Certain groups may benefit from peer support more than others; evidence was strongest for depression outcomes within perinatal populations, but extremely variable for other populations. Peer support may differ in effectiveness depending on population needs and characteristics. PSWs need adequate pay, clear role descriptions and guidelines (e.g. about boundaries and disclosure), ongoing training and supervision, and opportunities for progression. Attitudes about peer support held by non-peer staff may significantly support or impede the implementation and experience of PSWs, and non-peer staff may require training about PSW roles and how to work collaboratively with PSWs. Culture, hierarchical structure and staff acceptability of peer support impact implementation and experience of peer support—structural and cultural change may be required for peer support to succeed, e.g. ensuring a recovery-oriented care model is operating in the service.

Implications for policy

Successful implementation of PSWs in healthcare settings is likely to require a coproduction approach with clearly defined PSW roles, a receptive hierarchical structure and staff, strong leadership and appropriate training (for PSWs and staff) with clinical and/or peer supervision alongside safeguarding. Issues relating to cost, lack of time and lack of resources are key considerations for service providers aiming to implement PSW that is sustained and effective within services. Additionally, Services could benefit from clear, coproduced guidelines, outlining the steps that are most likely to lead to successful PSW implementation.

Implications for research

Future primary and secondary research could usefully explore the differences in efficacy, implementation and experiences in paid PSW over time as it becomes more established; an important distinction as there are likely to be differences in these outcomes as the role of PSW develops. Such studies could consider using more personalised outcome measures such as goal-based outcome measurement [ 76 ]. Current PSW roles are still poorly defined and PSW content, including PSW variations (such as whether PSWs should deliver structured or more loosely structured, informal interventions, or whether interventions should vary according to need and context), need further exploration. Realist investigations around what works for whom, how and in which contexts would uncover more fine-grained detail on the specific contexts and mechanisms that explain these differences. Very few reviews included in this umbrella review reported lived experience researcher leadership or involvement in the undertaking of the study. It is imperative for future research in this area to appropriately reflect the priorities of those who are directly involved in PSW, either as providers or as service users. As the number of PSWs increases and more formalised roles are created, positive impact may not be restricted to outcomes of those supported by PSWs, but also to the functioning of services at an organisational level [ 68 ]. Further research is needed to evaluate how teams function with and without PSWs in order to understand how they may impact experiences through changes at a system level [ 68 ].

Our umbrella review has summarised data from 35 reviews on the effectiveness, implementation, and experiences of peer support for mental health. Although we attempted to focus solely on paid peer support, this detail was often not reported in the reviews. While data on effectiveness was mixed, there was some evidence of improvements on outcomes including depression, particularly perinatal depression, self-efficacy, and recovery, illustrating the potential benefits of wider PSW implementation across mental health services. Good implementation of peer support depends on co-design with people with lived experience, clear job descriptions, a recovery-oriented workplace culture, strong leadership, appropriate training for PSWs and staff , and supervision for PSWs. However due to limited information on cost or cost-effectiveness, we are unable to draw conclusions around resources required to implement PSWs. Experiences of peer support were from a range of perspectives. Peer support was mutually beneficial for PSWs’ and service users’ wellbeing and recovery and PSWs became role models. However, at times PSW roles were ambiguous, this meant that the role was flexible but could also lead to confusion which could impact PSWs own recovery. Potential strategies to successfully implement peer support include that the PSW roles should be clear, PSWs should be appropriately trained and paid, as well as supported and supervised within a trusting and accepting workplace structure and culture that advocates for a recovery-oriented model of care.

Lived experience commentary, written by LM and KM

This study provides a useful summary of the available research on peer support. By providing an overarching review of 35 reviews including 426 available studies, the paper brings together the knowledge on a topic of growing importance and understanding of the experiences, effectiveness, and implementation of peer support. However, this evidence is limited to ‘paid peer support workers’ included in data from academic literature of systematic reviews.

The nature of an umbrella review means that the systematic reviews themselves are synthesised, limiting our ability to look at specific details in the primary studies, for example to look for evidence of lived experience involvement or co-authorship or demographics of participants. The papers within the review are likely to have originated from traditionally funded research enquiries, and an umbrella review potentially magnifies academic or clinical perspectives over user voices and interests. While this is a frustration in any mental-health-related topic, this is particularly concerning in relation to peer support, with its origins in our user-led history.

The roots in user-led peer support are also overlooked when limiting the studies to paid peer support work. Although they might use the same language of mutuality and reciprocity, the two feel different. We are hesitant to suggest that we would prefer the skills and expertise of our supporters to be voluntary and unpaid; we strongly believe their expertise should be valued and funded. But there is something magical about informal peer support which can be lost when it is over-policed in bureaucratic cultures. Additionally, with studies included in the review dating back to 1979, we question how relevant these studies are in informing England’s evolving peer support landscape.

A crucial area of future research is exploring what type of peer support works best for whom and in what circumstances, and how we can deliver this. Furthermore, we need to better understand how NHS cultures can be supported to value the expertise that originates in our lived experience, including the marginalised experiences which have been disproportionately represented in mental health services.

Availability of data and materials

The data used and/or analysed during the current study are available from the corresponding author on reasonable request.

Abbreviations

A MeaSurement Tool to Assess systematic Reviews

Consolidated Framework for Implementation Research

Implementing Recovery through Organisational Change

Lived Experience Working Group

Population, Intervention, Comparator group, Outcome

Peer support worker

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Acknowledgements

This work is supported by the NIHR UCLH BRC.

This study is funded by the National Institute for Health and Care Research (NIHR) Policy Research Programme. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

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Ruth E. Cooper, Katherine R. K. Saunders, Jessica Griffiths, Ruth Stuart & Alan Simpson

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Anna Greenburgh, Rebecca Appleton, Phoebe Barnett, Sophie M. Allan, Brynmor Lloyd-Evans & Sonia Johnson

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National Collaborating Centre for Mental Health, Royal College of Psychiatrists, London, UK

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Prisha Shah, Karen Machin, Tamar Jeynes, Lizzie Mitchell, Beverley Chipp & Stephen Jeffreys

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All authors (RC, KS, AG, PS, RA, KM, TJ, PB, SA, JG, RS, LM, BC, SJ, BLE, AS, SJ) substantially contributed to the conception or design of this study. Data acquisition was undertaken by: KS, RC, JG, RS, RA, KM, PS, SA, PB. The data were synthesised and interpreted by: KS, AG, RA, PS, KM, TJ, and RC. KS and RC led on drafting the manuscript with input and/or editing by all other authors (AG, PS, RA, KM, TJ, PB, SA, JG, RS, LM, BC, SJ, BLE, AS, SJ). All authors (RC, KS, AG, PS, RA, KM, TJ, PB, SA, JG, RS, LM, BC, SJ, BLE, AS, SJ) read and approved the final manuscript.

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Additional file 1: appendix 1..

Prisma checklist [ 29 ]. Appendix 2. Full search strategy. Appendix 3. AMSTAR2 ratings. Appendix 4. Excluded studies following full text screening, with reasons. Appendix 5. Study overlap. Appendix 6. Effectiveness of peer support outcomes: results for non-meta-analysis results. Appendix 7. Experiences of peer support (detailed themes).

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Cooper, R.E., Saunders, K.R.K., Greenburgh, A. et al. The effectiveness, implementation, and experiences of peer support approaches for mental health: a systematic umbrella review. BMC Med 22 , 72 (2024). https://doi.org/10.1186/s12916-024-03260-y

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Peer support for mental health seeks to reduce isolation, combat stigma, and promote hope, empowerment, recovery, and community. Modalities of peer support within mental health vary greatly in degree of formality and specific structure, approach, and the types of settings and organizations in which they are embedded. This includes participation in mutual support, peer-run organizations, and peer-delivered services. Research has demonstrated positive outcomes for peer support in mental health, particularly for outcomes associated with broader recovery processes, but studies have generally had significant methodological limitations. Key areas for further development include greater specification of peer support mechanisms, wider implementation of strategies for integrating peer support within organizations, and more rigorous research. Greater advocacy is also needed for expansion of funding sources and reimbursement mechanisms that preserve the flexibility and individualized approach of peer supports, as well as greater opportunities for adequate wages, career advancement, and leadership roles.

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Transcending technology boundaries and maintaining sense of community in virtual mental health peer support: a qualitative study with service providers and users

• Elmira Mirbahaeddin 1 &
• Samia Chreim 1  

BMC Health Services Research volume  24 , Article number:  510 ( 2024 ) Cite this article

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This qualitative study explores the experiences of peer support workers (PSWs) and service users (or peers) during transition from in-person to virtual mental health services. During and following the COVID-19 pandemic, the need for accessible and community-based mental health support has become increasingly important. This research aims to understand how technological factors act as bridges and boundaries to mental health peer support services. In addition, the study explores whether and how a sense of community can be built or maintained among PSWs and peers in a virtual space when connections are mediated by technology. This research fills a gap in the literature by incorporating the perspectives of service users and underscores the potential of virtual peer support beyond pandemic conditions.

Data collection was conducted from a community organization that offers mental health peer support services. Semi-structured interviews were conducted with 13 employees and 27 service users. Thematic analysis was employed to identify key themes and synthesize a comprehensive understanding.

The findings highlight the mental health peer support needs that were met through virtual services, the manifestation of technology-based boundaries and the steps taken to remove some of these boundaries, and the strategies employed by the organization and its members to establish and maintain a sense of community in a virtual environment marked by physical distancing and technology-mediated interrelations. The findings also reveal the importance of providing hybrid services consisting of a mixture of in person and virtual mental health support to reach a broad spectrum of service users.

Conclusions

The study contributes to the ongoing efforts to enhance community mental health services and support in the virtual realm. It shows the importance of virtual peer support in situations where in-person support is not accessible. A hybrid model combining virtual and in-person mental health support services is recommended for better accessibility to mental health support services. Moreover, the importance of organizational support and of equitable resource allocation to overcome service boundaries are discussed.

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There is growing awareness around the world of the need to improve mental health services, yet the response to the need has been constrained [ 1 ]. The World Health Organization (WHO) has pointed to the urgent need to invest in community-based mental health services that prioritize a person-centred, recovery approach. Among these services, the WHO highlights the importance of peer support [ 1 ]. Formal mental health peer support refers to emotional and social support (Mental Health Commission of Canada, https://mentalhealthcommission.ca/what-we-do/access/peer-support/ ) provided by an individual referred to as a peer support worker (PSW). A mental health PSW is a person who has lived experience of mental health issues, has paid employment in a mental health support or services organization– often after receiving training– and offers intentional support to clients with mental health challenges through empathetic understanding and encouragement of self-determined recovery [ 2 , 3 ].

Peer support is based on the belief that individuals who have navigated their own recovery experiences hold unique insights and lived practical knowledge that can be helpful in supporting others in their recovery (Mead, Hilton & Curtis, 2001). The notion of recovery in mental health refers to a multidimensional process that involves individuals actively engaging in their own well-being, making self-determined choices, fostering social connections, and pursuing a meaningful life despite the presence of mental health challenges (Mead, Hilton & Curtis, 2001). Peer support represents a political alternative to professionally led services and decision-making processes; it is an important approach for promoting the agency of individuals with mental health issues and reversing the power imbalances prevalent in the mental health system. Peer support can promote empowerment and self-efficacy, help enhance coping skills and strategies, and contribute to overall quality of life and emotional well-being [ 4 , 5 , 6 ]. It has been particularly helpful in situations where traditional professional mental health services might not fully address the needs of individuals or are not easily accessible [ 3 , 7 ].

The importance of peer support became particularly salient during the COVID-19 pandemic. The pandemic adversely affected access to in-person mental health services, especially in jurisdictions where lockdowns were enacted. Peer support services in an online format created an opportunity to maintain availability and accessibility to basic yet important community-based mental health support [ 8 ]. A number of jurisdictions increased their peer support capacities by offering PSW training on remote services during the COVID-19 crisis (e.g., the Digital Peer Support Certification for peer specialists in the US that provided Medicaid-reimbursable virtual health services) [ 9 ]. Virtual peer support services have been beneficial in various ways including overcoming geographical barriers, reducing regional inequalities in access to providers, and offering convenience for a wide range of vulnerable populations in communities [ 10 – 11 ]. Hence virtual peer support has created bridges allowing people in need of mental health support to access it. These bridges can be advantageous not only in crisis situations such as the pandemic but also in non-crisis contexts by offering expanded accessibility.

There has been growing use of technology for a variety of mental health and support services with an aim to improve accessibility [ 10 , 11 , 12 ]. However, the move to provide mental health services and support remotely, despite its many benefits, also comes with challenges. These challenges include, among others, the need for providers and service users to adapt to the utilization of diverse technologies including synchronous (e.g. video calls) and asynchronous (e.g. apps) modalities [ 11 ]. We view the technological challenges as setting boundaries to providing, accessing and utilizing virtual services.

Existing literature does not provide adequate insight into how individuals adapt when a sudden and major change occurs from in-person to remote mental health and support services. Makarius & Larson (2017) state that the role of individuals in virtual work has been overlooked by considering them as “passive actors” [ 13 , p.166] while portraying organizations as accountable for effective virtual work. They indicate that extant research on virtual work has tended to focus on virtual teams. Therefore, there is a need for a greater focus on individual experiences [ 14 – 15 ]. This applies in a general sense, but also, specifically to peer support. With the advent of COVID-19, PSWs became one of the forefront providers of mental health support [ 9 ]. Service users also had to adjust to virtual services. Yet limited knowledge exists about the individual experiences in the process of adapting and acclimating to using online mediums in virtual services in the context of peer support [ 16 ]. As virtual mental health services and supports are expected to continue to be used in the future, the experiences of individuals providing and receiving virtual peer support have become an important research topic.

Another issue of importance that needs to be considered when peer support is delivered virtually is whether technology-mediated connections allow peer support groups and individuals to maintain a sense of community. This sense of community is grounded in people’s relationship with a group that offers them membership, fulfillment of needs, and shared emotional connection [ 17 ], yet it is unclear whether the sense of community that is characteristic of in-person peer support is severed when services move online.

Earlier conceptualizations of communities emphasized the spatial dimension, defining communities as groups of people associated with a setting such as a neighbourhood or village [ 18 ]. McMillan and Chavis (1986) point to earlier work [ 19 ] that distinguished between the geographical notion of community (such as a neighbourhood or town) and the relational notion concerned with human relationships regardless of location [ 20 ]. McMillan and Chavis [ 20 , p. 9] propose a definition of sense of community that applies to both of these conceptualizations, and is as follows: “Sense of community is a feeling that members have of belonging, a feeling that members matter to one another and to the group, and a shared faith that members’ needs will be met through their commitment to be together.” These authors point to four elements in their definition: (a) membership (a feeling of belonging or personal relatedness), (b) influence (a sense of mattering to the group), (c) integration and fulfillment of needs (a feeling that needs will be met through membership in the group), and (d) shared emotional connection (a belief that members have shared history and similar experiences) [ 20 , p. 9].

In peer support communities, the principles of valuing individuals’ experiential knowledge of mental illnesses, determination for recovery, equality and reciprocity, and mutual agreement on what would be helpful for different individuals play a vital role [ 2 , 3 , 4 , 5 , 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 ]. People benefit in different ways by having a sense of community. They experience less isolation and social exclusion, have a greater sense of well-being, can call on support when they need it and learn from the experiences of other members [ 22 – 23 ]. Cronenwett & Norris (2009) examined the role of social collectives in providing peer support services to individuals with co-occurring disorders and the benefits of social support and shared experiences in promoting recovery [ 24 ]. However, it is not clear yet how peer support sense of community is created or maintained in situations where peer support moves to a virtual space and relationships are mediated by technological tools. To our knowledge, this topic has not been addressed despite its importance.

Given the importance of peer support and the recent surge in virtual peer support service provision, our objective is to understand how technological factors can act as bridges and boundaries to services, and whether and how a peer sense of community can be built or maintained in a virtual space that relies extensively on the use of technological tools. We aim to understand these issues from the perspective of individuals affected directly by the changes from in-person to virtual services. Therefore, we focus on PSWs who provide support services, and on the service users or clients– also known as peers. Inclusion of peer voices is particularly important, given that this is a gap in the literature since much research on peer support is based on the views of managers and PSWs, and not on the views of the peers themselves [ 25 ]. This limitation in the literature applies to peer support specifically, but also more broadly. For example, a systematic review investigating the implementation and adoption of telemental health found that research studies involved fewer service users compared to the number of providers (only 9 out of 45 included papers involved service users), indicating that the point of view of service users has not been adequately researched and little is reported about their experiences [ 26 ].

Hence, we ask the following research questions: What mental health peer support needs were met with virtual services? How were technology-based boundaries manifested and what bridges were built to open boundaries? How, if at all, was a sense of community established or maintained in a virtual space? We researched these topics in the case of a peer support organization that transitioned from in-person to virtual services during the COVID-19 pandemic. While in the case we studied the move to a virtual space was a response to exacerbated mental health challenges during the pandemic, it also opened up opportunities to understand if and how peer support could be enacted virtually beyond pandemic conditions . The surging interest in providing mental health services and support virtually thus makes our study a timely endeavor, and our findings a valuable addition to the literature.

Study design and context

We adopted an exploratory case study approach [ 27 ] as it allows us to understand complex social phenomena and generate new insights [ 28 ]. We aimed to achieve a deep understanding of how members of a peer support organization viewed or experienced mental health needs within the broader social context of the pandemic, how they interacted with technological aspects of virtual services, and the strategies they used to create a sense of community in a virtual space.

Our primary data consisted of semi-structured interviews with employees (PSWs and/or managers) and service users (or peers) of a peer support organization based in a major city in Ontario, Canada. This organization had more than twenty compensated PSWs, some of whom held managerial positions in the organization. It served the needs of a large number of peers who sought its various services. Before the COVID-19 pandemic, this organization primarily offered in-person services that included, among others, various peer groups as well as recreational and social programs which were also intended to provide support. We initiated the data collection in the early stages of the pandemic when lockdown regulations were implemented in Ontario. The reason for selecting this particular case was the organization’s rapid transition to virtual platforms in response to increased demand for peer support during lockdowns and isolation.

Data collection

We collaborated with the organization in informing potential participants about the study. An email was sent by the organization to all its employees and service users informing them about the study, and inviting individuals interested in participating to contact the researchers. Thirteen PSWs and twenty-seven service users contacted the researchers. We interviewed all individuals who contacted us, thus our study included forty participants. Participants’ age ranged between being in their 20s and 60s, and the majority identified as female.

We conducted semi-structured interviews with participants. Different interview protocols were developed for each group of participants, and they were developed for this specific study. Based on the research questions and objectives, key themes were identified to guide the formulation of the interview questions. Moreover, the interview protocol was informed by existing literature on mental health peer support, the pandemic circumstances and concepts relating to boundary theory and sense of community. We adjusted the interview questions to account for feedback from the organization, whose approval we sought on the final interview protocols. A small group representing managers, PSWs and peers participated in providing feedback and validating the interview protocols. Overall, the questions were crafted to be clear and open-ended to encourage detailed responses and in-depth exploration of the subject matter. The interview protocols included questions on individuals’ mental health experiences during the pandemic, their experiences associated with opportunities and challenges of virtual services technology, the strategies that they and the organization used to capitalize on opportunities, remove difficulties, and build or maintain a sense of community. Open-ended questions enabled us to probe for additional details and allowed the participants to share beyond our questions, which provided us with rich and nuanced data [ 29 ]. The interviews were conducted via Zoom or phone, based on the participant’s preference. The interviews were conducted during the pandemic from February to November 2021. They were recorded and transcribed verbatim.

Data analysis

We conducted thematic analysis and used the N-Vivo software for data coding and retrieval. Specifically, we followed the steps outlined by Braun and Clarke (2006) [ 30 ]. Familiarization with the data started with both authors conducting a number of interviews conjointly, taking notes during this process and discussing the preliminary data. Familiarization was enhanced by the first author’s transcription of the interviews. We then generated initial codes by immersing ourselves in the data. The long list of initial codes– or descriptive codes [ 28 ]– was closely related to participants’ words. We then identified emergent themes by grouping similar codes together and reviewing that the coded extracts fit the themes. The process involved constant comparison and was iterative in that we reviewed the codes and themes and changed the theme names when we identified emergent ideas based on new data. Analysis was mostly inductive, but we had also been sensitized by extant literature. In the later stage of the analysis, we grouped the themes into more abstract categories, continuously reviewing and refining the categories. Our final descriptive codes and theme list is presented in Table  1 .

The first author performed the primary analysis and the second author reviewed the analysis on the basis of the data. When the authors’ interpretations differed, they returned to the data to find answers. This process offered confidence that the analysis was well anchored in the data from participants. We conducted member checking—explained in the next section— by seeking feedback from the participants on our analysis.

Establishing trustworthiness

We took several steps to establish the trustworthiness of the study [ 28 , 31 ]. Two researchers worked together on data analysis, returning to the data when disagreements emerged. This offered triangulation through the involvement of two researchers. We also report extensive quotes from our participants as evidence of our analysis. In addition, we conducted member checking to determine whether our findings captured well the experiences of participants and thus ensured the credibility of the results. This entailed sharing a draft of the manuscript with the participants and asking them to provide their feedback on the researchers’ interpretation and whether those aligned with their experiences. We received feedback from two PSWs and five peers, all of whom were in agreement with the results reported. One participant commented, “ I feel that the paper captured… challenges and victories peer supporters experienced during COVID ” and another participant stated, “ It is a good in-depth work/story showing the mental health challenges and how those were addressed during the pandemic, how people evolved from their experience and stood for each other when it mattered the most. ”

Research ethics

The study was approved by the Research Ethics Board (REB) of the University of Ottawa (Reference number S-11-20-6226). All study participants were fully informed about the project through both written and oral communication, and willingly gave their consent. The consent form included information about mental health resources available to them if needed, and participants were informed about their right to withdraw from the study. All procedures followed the appropriate guidelines and regulations.

We begin with the results showing the need for virtual mental health support during the pandemic and follow with the technology-based boundaries and bridges identified in virtual mental health support. In the last section of the results, we focus on the strategies that were used by the collective to maintain a sense of community despite the physical distances. It is important to note that we give attention to pandemic-related dynamics where pertinent, but also go beyond the pandemic context to address more general issues related to virtual peer support that were central in our participants’ accounts.

Need for virtual mental health support services

Boundaries related to accessing in-person services.

The pandemic amplified social issues that resulted in a surge in mental health challenges. Peers shared concerns regarding social vulnerabilities that became exacerbated during the pandemic. They told us about their challenges which included homelessness, domestic abuse, and struggles with addiction that were exacerbated during lockdowns. One peer referred to the “ downward spiral [of mental health] once the COVID-19 pandemic hit”. A peer pointed out that “literally everything shut down in the city…the needs of the community are just desperate ”, and a PSW stated that “with the pandemic, there was a lot of isolation, and it was really hard…also just the transition back as things started opening up. It’s really anxiety provoking for a lot of people. ”

There was also difficulty finding mental health services as there were lengthy wait times to see a mental health professional. A peer stated: “I think the most difficult thing was probably finding people to connect with…. There was a three-month waiting list to be able to even speak to anybody.” It is important to note that accessing mental health services in person was difficult for many people even before and regardless of the pandemic. The following quote by a peer illustrates one of many situations under which accessing in-person peer support can be difficult: “When you have a baby, it’s hard to be somewhere on time and remember to bring everything that you need and deal with the cranky baby… When your expectation is that you’re going to participate in these types of groups in-person, it can be very jarring ”.

Virtual peer support as a bridge

Virtual services can be a bridge connecting individuals to mental health peer support, especially when these individuals experience challenges with attending in-person peer activities. The peer who reflected above on the difficulties associated with accessing in-person peer support pointed out that “ when you can proceed in groups virtually, you can mute yourself, you can step away, your baby’s crib is right there…. So it was a really wonderful option.” A peer reflecting on the high cost of seeking “formal therapy” and the inconvenience of doing so, pointed out that virtual peer support was “a light in the tunnel” for them: “it was free, it was accessible, it was easier to find a peer support group during times that I could access it. During the pandemic, I accessed more groups than I did [in person].”

We also heard from peers whose anxieties had been exacerbated during the pandemic. A peer shared that seeking in-person mental health support was a major challenge. This person added that “ it was nice to be able to access things from Zoom”. Considering the risk of contracting the coronavirus, peers felt that not having to leave the house gave them a “sense of accomplishment” because accessing services remotely helped them remain engaged. A peer noted that virtual peer support had been “ the winter month survival ” for many individuals.

Peers also told us that virtual support was helpful for them in general, and not only because of the pandemic. Social anxieties, unrelated to the pandemic, were often mentioned by participants. A peer stated: I’m very timid to talk in a support group, and with Zoom, I feel I can raise my hand with the computer and I get to speak. Whereas in a peer support group in person, I don’t always get to do that. And… you get to see everybody’s facial reactions when you’re in the gallery view [on Zoom], whereas you can’t do that when you’re in the group because I’m very shy and very anxious.”

Anxieties were also related to driving. A peer stated, “I feel grateful I don’t have to drive far or pay for parking. Without the anxiety of driving and being on time too is very relaxing… (Virtual peer support) is a blessing.” For some individuals for whom transportation to in-person meetings could be difficult due to time or financial constraints, virtual services opened the possibility of receiving peer support.

Peers also told us how the virtual services facilitated receiving support in cases where struggles with depression kept them from seeking in-person services: “ If you’re so depressed, it’s hard to get out of bed… That’s another thing about Zoom, you don’t have to worry so much about your appearance. If you haven’t washed your hair that day, it’s fine… It makes it so much easier to attend .”. Virtual services were also very helpful for peers who felt they needed to seek support frequently: “ I’ve struggled with feeling alone and… feeling overwhelmed… If I had to go to a walk-in, I wouldn’t have done it. I wouldn’t have had access and that would have been bad for me .” Moreover, peers who felt self-conscious about their appearance, had experienced weight shaming, or physical differences found it more comfortable to attend virtual meetings because they “take away the self-consciousness” as a participant stated. By allowing participants to control what they reveal (e.g. by turning the camera on or off), virtual meetings may offer a certain sense of safety that in-person meetings may not provide.

Importantly, we were told that new members had joined virtual meetings who had not previously participated in in-person peer services. A manager pointed out that “a lot of new people who were not previous members have joined the community to get support or to get social interaction” and a PSW stated: “ we are supporting more people now. Our meetings are much larger. I’ve had people contact me from other provinces asking ‘Am I allowed to join?’ We’ve decided that as long as we have the capacity, anybody who wants can come .”

In sum, virtual services offered benefits for individuals who struggled with various issues including anxieties and depression, or whose life circumstances made it difficult for them to commute to in-person meetings. Although the pandemic (and the lockdowns associated with it) exacerbated some of the challenges that people had faced, the quotes above indicate that some challenges were not specifically pandemic-related, but rather pertained to more general mental states and life circumstances. The fact that virtual meetings drew in attendance from individuals who had never been to in-person meetings is a further indication that virtual platforms increase accessibility for peers.

Boundaries and bridges relating to telecommunication technology for virtual mental health support

Accessing virtual services offered peers opportunities to receive support, but accessing these services had its own challenges. A major challenge was technology, which manifested in terms of access to and compatibility of devices, access to internet connection, and basic technological skills. We report on these challenges and on how they were mitigated.

Virtual service technology boundaries

Technology-based challenges were associated with access to and use of equipment, access to internet connections, and limited technology-based skills. Some individuals from both groups (peers and PSWs) found it difficult to transition to virtual services due to the unprecedented complexities introduced by the new service environment: “ the hardest thing for people is the technology part of it .” The experience of change to virtual services was described as “ anxiety-provoking ” for people who were not familiar with the use of technology such as computers and smartphones in daily life.

Accessing virtual services required the use of the appropriate equipment such as smart phones, and for some peers, access to these devices was a challenge. A peer described: “ The devices that I had access to were lower-end devices… My cell phone was blocking out and freezing ”. Another peer stated: “ I would drop in occasionally using my phone. But I didn’t have a computer, and currently, I’m receiving disability benefits… As far as having money to burn, that’s not an option for me, it’s a very tight situation ”. In addition, lack of access to and reliable internet connection was another boundary. A participant described the lockdown situation: “ It was a big shock. It’s a big change. It’s forcing a lot of people who didn’t have the Internet to get Internet. So that caused a lot of stress and strain on a lot of people ”. Peers who shared an internet connection with multiple residents had to coordinate schedules since simultaneous Zoom calls could interrupt connections.

For some individuals, a lack of technology-based skills was a boundary. Some peers had difficulty navigating the nuances of the various platforms and their compatibility with the devices they were using: “ You had to figure out what platform was used and whether or not your technology was going to be compatible with it. ” Other peers experienced difficulties early on with logging in and accessing meetings: “[It was a] struggle with the process of getting signed up, to get the notifications, to get the information ”. Others reported difficulty navigating the programs’ options during the meetings (e.g., using the raise hand option). The challenges did not only pertain to peers. PSWs also faced difficulties with technology: “I did not have the technology needed to be able to do my job from home. I had a smartphone, but it’s still very challenging to host a Zoom group when I can only see 4 little faces on a screen.”

Virtual service bridges: supports provided by the organization and PSWs

When the lockdowns were mandated, concern about peers’ mental health needs drove the organization to create a variety of platforms through which peer support services could be accessed. Within a few weeks, the organization created remote services to maintain continuity in support for peers. A PSW pointed out “They were relying on us for their well-being.” This created a sense of urgency to adapt quickly in order to meet the needs of the community.

Efforts were quickly deployed to connect with peers by phone and to create accessibility through online options. As a peer stated, they were “ trying to make things just as accessible as they could be ”. To this end, the organization engaged in advocacy efforts with external partners to provide devices, data, and internet connection to those without technology. A manager stated: “Many people with mental health and addictions don’t even have access… We have been providing people with tech and tablets and smartphones and connectivity, and we’re a peer agency, we don’t have this kind of stuff!… I kept raising it at our (regional health authority) table with a lot of people who are very high up. And they said, ‘Let’s do it’! So we applied and put together a proposal… We now have contracts with [internet] providers, so [one company] provides the smartphones with sim cards and [another company] provides the tablets.”

PSWs walked peers step by step through the Zoom functions that they needed in order to attend and participate in virtual meetings. A PSW pointed out: “ We did a lot of one-on-one training and coaching and mentoring with people to help them get their virtual equipment set up. At first, it was a lot of, ‘this is how you set up Zoom, this is how you set up your camera’… and then more people got comfortable using it .”

PSWs also received training and support. Training included group and one-on-one sessions, and manuals were made available to provide instructions for an online environment: “In the beginning, we had training from a staff member who is a certified online facilitator… and it walked us through how to use Zoom. I also had one-on-one training… to walk me individually before doing any online groups… I asked my questions, and felt comfortable then to roll with it, [and] manuals were written with the policies of how we were gonna do this online.”

The social media team of the organization also became very active during the early days of the lockdowns. A manager who was part of this team described the role of the social media team: “We re-did all the posters we had for in-person, we switched them to virtual, giving new contact information, laying out the registration process…Every day we posted what groups we had going on, and all of that content had been created after the pandemic started. Again, a lot of that very quick adaptation to the needs.” We were also told that the organization added and adjusted online group activities and services as the lockdown policies and the needs of the peer community changed.

In sum, the findings show the challenges and solutions relating to using telecommunication technology for virtual mental health support during the COVID-19 pandemic. Accessing and providing these virtual services required access to and compatibility with devices, reliable internet connection, and technology-based skills, which could be challenging for some individuals. To address these challenging access boundaries, the organization arranged to provide devices, data, and internet connections, along with training and ongoing support to both peers and PSWs. Meanwhile, the organization also experienced a learning curve as it was adapting to the new circumstances and applied efforts to bridge the gaps in service access.

Maintaining a sense of community in virtual mental health support services

The peer support community already existed before the pandemic lockdowns. Peers would come to the organization locale for in-person services and programs, and many relied on these programs for mental health support. The lockdowns were disruptive of the in-person programs, which had to be halted, and as we elaborated earlier, the organization quickly responded by establishing services online. We were interested in whether and how a sense of community could be re-established and maintained in a virtual environment. Our findings point to five strategies in which the organization and the peers engaged, and which enabled maintaining a sense of community. We present these strategies next, and would like to point out that although we discuss them separately to facilitate the presentation, these strategies were not mutually exclusive.

Maintaining continuous presence and social interaction

In a context of increasing isolation, and to meet the needs of peers, the organization quickly began to offer phone services whereby peers and PSWs could connect by phone. Participants told us the phone support communicated a sense of caring and had a significant impact on individuals’ mental health during the pandemic. One of several volunteer peers who took on the task of checking on other peers regularly, indicated that for some individuals, their only connection to the outside world was through these phone calls: “ It could mean the difference between being stable and unstable… Being unstable for a long time could lead to something terrible .” Phone calls were not only about mental health topics, but could also include friendly conversations about daily living activities, which solidified relationships. The peers looked forward to these phone calls as a means of getting positive contact with someone who cared to listen. As one peer said, “They opened up a phone line and… I would call almost every day… I really needed [peer support]… So having that as a service was really, really good.” And another peer stated: “[It was great] knowing that they’re always there. It’s just the comfort of knowing there’s someone to reach out to. ”

It is important to note the speed with which the organization was able to adapt and to create programs that met the peers’ needs, thus maintaining a continuous presence. As a manager stated, “ [peer support] works well in a pandemic because we were able to be more flexible.” This is in contrast to institutional mental health services that were subject to various regulatory restrictions that would delay the introduction of online services. A PSW stated, “ we are extremely adaptable.”

In short order, the organization created a variety of online groups and activities in which peers could register and participate. These programs allowed the peers to continue interacting and engaging with one another. The sense of community was palpable even for peers who did not participate actively in the programs: “So for these people [like me], even though their videos and microphones are off, being immersed in the group, feeling like, hey, I’m not the only one, these are my people… and they look good and they’re talking and they’re feeling great. I feel good being there. And I may not want to say anything. It’s amazing. It’s a good feeling.”

Another peer commented on the relationships with the PSWs in the virtual meetings and said “… you can access [virtual support] anywhere and see the facilitators that you’re connected to. And that sometimes is enough to just make my spirit go fly. ” A similar sentiment was communicated by PSWs, one of whom stated: “We have things seven days a week that peers can come and join us. That has been really great; [it] helps keep the sense of community because we have that touchpoint with them. “

Establishing multiple points of connection

The organization was intent on meeting the diverse needs of peers, and to this end, created a variety of virtual programs and groups as well as phone services. In addition to the mental support groups, there were special activities such as yoga, crafting, and cooking, all of which instigated mutual support. These various activities could draw in diverse people who share similar interests, creating online communities. Peers stated that despite the lack of one-on-one eye contact, they found online groups were effective in offering valuable social activities related to wellness, nutrition, parenting, and gender-based support. One peer noted, “ They have a variety (of services)… Sometimes I’m in the mode of meeting [people], or joining arts and crafts. Sometimes I join the trivia online.” Another peer indicated that it was possible “to find the niche of the thing that you were looking for ” and a third peer stated: “ the trivia for me is very engaging… everybody can play. ”

The availability of multiple points of connection implied that the peers and PSWs could remain connected to each other on a regular basis. Another initiative by the organization to encourage this sense of community was the creation of a Facebook group. Due to the variety of points of contact, new members joined as they learned about the virtual services, expanding the community. However, the main aim of the organization remained to continue providing mental health support. A manager stated: “A lot of what people wanted was social connection, which we do offer in recreation. But we’re a support-based organization, and even our recreation has some support components to it. We came up with this private Facebook group which has helped a lot with that because people can stay in touch, not just with facilitators or with a group in a moment, but they can talk to each other whenever they want should they choose to join. “

Building on organizational and peer culture

Participants pointed out that peer culture is permeated by care and concern for members, and this was clear in various quotes we reported above from managers, PSWs and peers. In fact, managers and PSWs are also peers and they pointed this out continuously during our study. For example, a manager stated: “ It’s very helpful when peer support is informed by a community of people. And when peers can run some of their own services and see that peers are not only people who are recipients of services but actually are also managers ”. This manager also pointed out: “A peer-run community of peer supporters can help people meet different needs: their creative needs, their social needs, their support needs. There are physical needs, we’re doing some walking. We’re supporting people to get technology so they can not only take part in our Zoom meetings but also order their own groceries online or maybe they can talk to their doctor online now. Peer support has a lot of strengths.”

Another manager noted, “ It’s never just a job for people [at the organization]. It’s about how we can create something that is going to benefit the people who need it .” This focus on helping and supporting each other was integral to the organization’s mission and culture. This focus was shared by peers. Increased involvement of peer volunteers, who were not paid by the organization, in running services including the voluntary phone line was highlighted as an example of peer values and practices. A manager explained, “ One of the things that’s really important is to rely on the people who are actually DOING the thing, as opposed to me saying “well I know what’s good for this”, but actually leaning into our values .” Various participants mentioned that the implementation of online mental health support during the pandemic was an indication of resiliency in the peer support community. A peer stated “ We weren’t able to meet face to face. So people took it upon themselves to set up and organize these meetings and to learn how to use the technology to provide those services. ”

Acting collectively

The sense of community was also enabled by how decisions were made in the organization and with the help of peers. Deciding and acting collectively helped maintain a sense of community in the virtual space. This approach was especially effective during times of disruption that affected the organization and the peers. Overall, the organization’s collaborative approach to decision-making and focus on benefiting those in need were key components of its success.

The organization relied on discussion-based decision-making, with all staff members coming together weekly to discuss various issues and make decisions for the week. The management approach was collaborative and non-hierarchical. A manager said, “ We make decisions with the management collectively, and at times, when it’s appropriate, we make decisions with all staff .” Another manager described how “ the hierarchy felt a lot flatter” during the pandemic and the priority became “Who’s got what competencies? Who’s got what skills? Bring them in!” . Different members of the organization contributed their knowledge and skills to enhance the capacity to move services online. A PSW said: “We all bring our own perspectives. So I said my specialty is looking at the programming and the scheduling and what is feasible for us as staff… it was a lot of communication.”

Sharing lived experiences and learning together

Peer support is based on the shared lived experience of individuals. Sharing these experiences helps build bonds among peers. We were interested in how the virtual environment could have affected the sharing of experiences. Although some peers pointed out that they found it easier to share experiences in person, others– as we showed earlier– indicated that the online environment made it easier for them to participate. A PSW indicated: “We offer that space to just connect… Even though we’re saying “You gotta raise your hand before you talk”– that was an adjustment period. But now it’s the norm… That sense of belonging comes from connecting around shared lived experiences. So connecting around that shared lived experience is still happening. It’s just virtual, and a little more systematic.”

A peer described how the shared lived experience was helpful when using virtual services during the pandemic: “The ability to participate with other people who are struggling [was helpful], I just think that sharing those feelings and hearing that you’re not alone was worthwhile to me ”. Another peer reflected on the importance of the virtual services for connection around shared experiences of feeling “lost”: “It was a wonderful place to connect with people who were also struggling when everybody was sort of lost and in the same boat”.

Shared experiences were not limited to feelings of being lost and struggling. Members were also learning together, which solidified the sense of community. A peer pointed out: “[Relationships] became stronger in a sense, because we were all in the same boat… Sometimes the facilitators themselves were like I don’t know how to do that . We were all learning…and figuring things out. And I think that’s a good way to become closer to people. ”

In sum, various strategies were used by the organization and the collective (including PSWs and peers) to build and maintain a sense of community that was anchored in peer culture values.

Continuation of mental health support through a hybrid mode: importance of combining in-person and virtual services

Virtual peer services were “a lifeline” especially during the pandemic, as a peer noted. However, some peers also looked forward to returning to in-person services for various reasons. For some, the in-person services provided structure to their week and a chance to leave the house. A peer noted: “It forces me to get out of the house…I’m having difficulty leaving the house…half of me looks forward to it [the weekly support meeting], and half of me dreads it. But in the end, I get myself out of the door and I walk up to the center…I feel so much better afterwards.”

Naturally occurring conversations during coffee breaks or after the meetings, which contribute to supporting relationships, were missed. As one peer stated, “ A lot of it [peer support] is the action piece and when you’re connecting virtually, it’s just not the same as being in person ”. Some participants pointed out that in-person interactions offered a deeper level of connection through shared energy and physical space. A participant noted, “ When someone’s super upset, you can feel it. When people are in their own homes, it feels disconnected because there are so many other people there. I feel like we’re seeing less emotional distress, whereas in-person, it would be brought out– and not distress in the sense that they’re not coping, but that they’re bringing big feelings or things on their mind and they’re expressing them freely in person. I feel there’s a lot less of that since being virtual .” Additionally, some participants felt “strange” expressing strong emotions through a computer screen and pointed out that virtual settings offered less authentic connections compared to in-person interactions. Nonetheless, participants acknowledged that some people could still struggle regardless of the mode of interaction.

It was also pointed out that although virtual events drew in people who had never attended in person, some peers who used to attend in-person meetings did not join any virtual meetings, and it was not clear why this was the case or how they coped with the pandemic. Some of these individuals could not be found on online platforms to connect with. A participant stated, “… there’s a whole voice of those who can’t access virtual, those who have only been going in-person… So I think we definitely should try to cater to both [when designing mental health support services ]”.

Overall, peers expressed support for maintaining remote online mental health peer support services even as lockdowns were lifted, and pointed out that transitioning to a hybrid mode would offer efficiency in resource utilization and greater convenience for remote access. A peer emphasizing the need to continue the virtual services noted the importance of social integration for peers with disabilities: “ I think there’s a lot of people, especially with disabilities or just more issues who have a really hard time going in person. I feel like there’s a lot more people who were able to access services and I don’t think that they should just be cut off and done. ” Those living on the outskirts of the city or with other commitments had limited time to attend in-person support meetings, making hybrid services desirable after pandemic restrictions were lifted. Online meetings made mental health services more accessible, allowing individuals to manage their work-life domains more harmoniously. A peer said: “… People are always finding it a stress release and I like accessing it (peer support) from home sometimes instead of having to go to places…Sometimes I’m just not into seeing people, or going out and dealing with traffic.”

In sum, continuing with virtual services while also maintaining in-person services was seen as offering more access to peer support services to a broader population, and as providing more choice for individuals who sought peer support.

This study contributes to the literature in a number of ways. It emphasizes the importance of providing virtual peer support in situations where mental health in-person support and services are not possible or accessible. We have highlighted the technology-based challenges and opportunities that create boundaries and bridges respectively to peer support in a virtual space. We have shown that a hybrid model involving both virtual and in-person services offers better accessibility to individuals and groups in need of support, and have argued for the importance of maintaining both modalities. We have also shown that a sense of community can be established in a virtual space, and have highlighted the strategies that peer organizations and their members can utilize to maintain the community spirit. As importantly, we have contributed to the literature by including peer voices and highlighting their experiences in their own words. Researchers have pointed out that the experiences of service users have not been adequately researched [ 26 ] and this is particularly so in the case of peers [ 25 ]. Our research enhances understanding of service users’ lived experiences.

A hybrid model of peer support services

Our findings show, consistent with the literature, that each of virtual and in-person peer support service has its own advantages and disadvantages when used singularly, and that the joint operation of virtual and in-person services through a hybrid model provides more accessible service [ 32 ]. Using both approaches conjointly offers the opportunity to strengthen community-based mental health, and to reinforce recovery approaches that promote individual choice and self-determination. The importance and benefits of peer support and recovery approaches have been documented [ 33 ] and have been implemented increasingly across countries around the globe [ 1 ]. A hybrid model benefits service users in that during health system crises, such as a pandemic caused by an infectious disease when mental health needs are higher, access to mental health support can be maintained. Overall, this model offers promising potential as a vital resource to support the mental well-being of populations.

Using both models conjointly benefits not only service users and communities but also organizations that support mental health. By maintaining and strengthening both types of services, organizations that provide mental health services can build their capacities and be better prepared for sudden changes that might require suspending or limiting in-person services. This enhances flexibility and adaptability by maintaining a system that can dynamically switch between the two modalities.

Yet, despite the benefits of maintaining virtual services alongside in-person services, some PSWs and peers in our study reported a number of technology-related challenges that included difficulties obtaining internet connection or proper equipment, as well as limited skills with respect to the use of technology. Our findings are consistent with research which shows that providers and users of virtual mental health services report several limitations, such as difficulties with the adoption of the remote practice, and access and literacy challenges [ 11 , 34 , 35 , 36 , 37 ]. Our findings also show that to be effective, a mental health support system that utilizes a virtual mode of service delivery requires appropriate technological tools and infrastructure, as well as appropriate support. In the case we studied, the organization advocated for and obtained access to the internet and equipment for peers. Further, the organization allocated extensive time to the training of PSWs and peers. PSWs, once versed on the use of the technology, offered help to peers in group settings and one-on-one when necessary. This kind of assistance and collaboration is common in peer support communities, where principles of mutuality and cooperation prevail, but this also suggests the importance of providing adequate resources to peer support communities so they can achieve their full potential.

Another challenge associated with the virtual environment is that computer-mediated communications provide fewer social context cues; hence individuals who join an online community may experience less personal connection [ 23 ]. This challenge was identified by some of our participants, prompting us to ask how a sense of community may be established and maintained when peers connect virtually.

• Sense of community

Ilioudi et al. (2012) refer to virtual communities in health care as “a group of people using telecommunication with the purposes of delivering health care and education, and/or providing support” [ 38 , p.1]. These communities encompass a wide range of clinical services and technologies. During the COVID-19 pandemic, there was increasing attention to online recovery services and phone support, self-help and mental health self-management delivered virtually or in e-communities [ 39 ]. E-communities are critical for mental health support and have the potential to transform the philosophical approach to the provision of mental health services as they help bridge the gap between the high prevalence of mental health challenges and the relatively low capacity of mental health systems [ 40 ].

In peer support communities, individuals share experiential knowledge to encourage and pursue recovery as a mutual goal, showing common purpose and interdependence [ 41 , 42 ]. Despite many peer support e-communities having been set up and having flourished during the COVID-19 pandemic and thereafter, there has been limited research on how the sense of community can be established or maintained in these groups. In studies of groups and communities more generally (and not only in the case of peer support), there has been focus on applying quantitative measurements and scales for the assessment of the sense of community, e.g., the Brief Sense of Community Index [ 43 ], and the Brief Sense of Community Scale [ 44 ]. These scales have been applied to study academic communities of practice [ 18 ], online education programs for different groups [ 45 – 46 ] and for individuals with serious mental illness living in community settings [ 47 ]. However, less research applies qualitative methods to explore in more depth this sense of community.

Literature shows that a sense of community is important in mental health support, especially during crises such as the COVID-19 pandemic [ 48 ]. A better understanding of the sense of community in virtual services could uncover factors that contribute to a positive therapeutic environment [ 49 ]. Our results identified five strategies to maintain a sense of community amongst peers and providers in a virtual environment during the COVID-19 pandemic. These findings highlight the importance of having a holistic and multidimensional perspective where the organization, providers, and peers all play a role.

The strategies we identified resonate with McMillan and Chavis’ conceptualization of a sense of community [ 20 ]. Their conceptualization highlights four elements: (a) membership (a feeling of belonging), (b) influence (a sense of mattering to the group), (c) integration and fulfillment of needs (a feeling that needs will be met through membership in the group), and (d) shared emotional connection (a belief that members have shared history and similar experiences). By “ acting collectively” (as in our findings), individuals reinforce the notion that they belong to a community where their contributions matter and are valued. Acting collectively also allows the community to fulfill common needs. “ Building on organizational and peer culture ” involves recognizing the contributions of individual members that could reinforce the belief that each member has a meaningful impact on the community. This culture is inclusive and fosters integration and emotional connection among the members. “ Establishing multiple points of connection ” ensures that community members have diverse channels to interact, collaborate, and meet their needs. “ Maintaining a continuous presence and social interaction ” helps establish trust that membership in the community is a reliable path for meeting their needs. Finally, “ sharing lived experiences and learning together ” allows members to open up about their mental health (or other) challenges, contributing to an emerging collective narrative and shared history. Other organizations attempting to build or maintain a sense of community in a virtual space may find some of these strategies employed by the organization, the PSWs and the peers to be helpful.

Limitations and directions for future research

Our study has a number of limitations. Concerns regarding security and privacy in virtual health care communities have been highlighted in research [ 10 , 50 ]. Researchers have also pointed to potential conflicts within online communities set up for various purposes [ 51 , 52 ]. Our paper did not examine these privacy and social concerns, however, evidence regarding these topics is important to provide guidance on how to make virtual spaces safe for peers who participate. Future research on these topics would be useful.

In addition, our findings pointed to peer support users who did not access the mental health support services when these transitioned to virtual platforms. We did not have access to these individuals, and it is not clear what factors contributed to their absence. Future research may explore whether and how technology-based boundaries become an impediment to seeking mental health support for some individuals. We also need a better understanding of the mental health of individuals who stopped using peer support when services moved online.

Our study focused on an organization and its members (PSWs and peers) and did not include in-depth attention to macro system level influences on or implications of peer support in a virtual space. The socio-economic aspects of adopting virtual work and services require further exploration including the financial return on investment and social returns (e.g. recovery) associated with using hybrid mental health support services. Overall, future research may identify and address system level influences that can hinder or facilitate mental health virtual services within community organizations, and how the needs of and services provided by these organizations may influence the allocation of resources and mental health indicators at a systems level.

Implications for policy and practice

Our findings highlight the organization’s efforts to provide accessibility and support for both peers and PSWs and demonstrate the value of a proactive and responsive approach to addressing major change. Organizational and management support has been identified as a central factor in employees’ readiness when change occurs in an organization [ 53 ]. In fact, the COVID-19 pandemic situation highlighted the adaptability and resilience of peer support services and communities. As a manager in our study pointed out, the peer support organization was able to quickly and flexibly respond to the sudden surge in need for mental health support at a time when more institutionalized and strongly professionalized services were struggling to adapt. The resilience and adaptability of peer support organizations and programs are strengths in mental health care systems that are struggling to meet the needs of populations [ 1 ], yet these organizations and programs often receive a relatively small share of health care resources. Future policy may consider a more equitable allocation of resources to peer support services.

Another policy-related implication pertains to technology infrastructure and more specifically to who gets access to devices (such as smart phones and computers) and internet connections. Our study highlighted that lack of access to these resources was a boundary that challenged some peers seeking virtual support services. The peer support organization stepped in to create bridges by advocating with funders and tech providers. However, this leaves unsolved an issue that needs to be addressed at a higher societal level, namely the limited, yet necessary, resources available to some segments of the population (typically homeless individuals, people with disabilities, refugees and other groups). This issue should be an important consideration in future policy.

Finally, our study pointed to several practical implications based on the experience of the case we studied. For example, we pointed to the various strategies that peer organizations can use to maintain a sense of community in a virtual space. Further, in anticipation of the growth of virtual peer support services, organizations may consider the need for renewed training modules that integrate necessary skills relating to using technology for recovery support. Peer support organizations may also consider building their capacity to respond quickly to crises and major changes, as it is during these situations that their services may be in most demand.

The important role of mental health community services and the changing drivers in mental health systems have been noted by researchers. Norton (2023) points out that “ mental health services are currently undergoing immense cultural, philosophical, and organizational change. One such mechanism involved in this change has been the recognition of lived experience as a knowledge subset in its own right ” [ 54 , p.1]. The trends of peer support gaining in importance and being delivered in virtual as well as in-person spaces are poised to continue in the future. It is incumbent on researchers to continue studying the challenges and opportunities of peer support in its various models. Our study has been a step in this direction.

Data availability

The dataset used in this research is not publicly available as set out by the research ethics approval from the University of Ottawa and the consent forms signed by the participants. Further information is available from the corresponding author upon request.

Abbreviations

Peer Support Worker

United Kingdom

United States

World Health Organization

Research Ethics Board

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Acknowledgements

The authors would like to thank the peer support organization, the peer support workers and the peers who kindly shared their experiences with us.

This research was financially supported by the Partnership Engage Grants COVID-19 Special Initiative from the Social Sciences and Humanities Research Council (SSHRC), Fund # 1008-2020-1020.

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This article is part of EM’s doctoral thesis. EM and SC contributed to the study conception and design. Data collection was done in collaboration, and analysis and manuscript drafting were performed by EM, and were thoroughly reviewed by SC. Both authors critically revised the drafts until finalized.

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Mirbahaeddin, E., Chreim, S. Transcending technology boundaries and maintaining sense of community in virtual mental health peer support: a qualitative study with service providers and users. BMC Health Serv Res 24 , 510 (2024). https://doi.org/10.1186/s12913-024-10943-y

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Characteristics, outcomes, facilitators and barriers for psychosocial interventions on inpatient mental health dementia wards: a systematic review

• Naomi Thompson 1 , 2 ,
• Ming-Hung Hsu 1 , 2 ,
• Helen Odell-Miller 1 , 2 ,
• Benjamin R. Underwood 3 , 4 , 5 &
• Emma Wolverson 6 , 7  

BMC Geriatrics volume  24 , Article number:  364 ( 2024 ) Cite this article

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The National Institute for Health and Care Excellence guidelines state that psychosocial interventions should be the first line of treatment for people with dementia who are experiencing distress behaviours, such as agitation and depression. However, little is known about the characteristics and outcomes of psychosocial interventions or the facilitators and barriers to implementation on inpatient mental health dementia wards which provide care for people with dementia who are often experiencing high levels of distress.

A systematic search was conducted on MEDLINE, CINAHL, PsycINFO, Psychology and Behavioural Sciences Collection, and Scopus in May 2023, following PRISMA guidelines. Reference and citation searches were conducted on included articles. Peer-reviewed literature of any study design, relating to psychosocial interventions in inpatient mental health dementia wards, was included. One author reviewed all articles, with a third of results reviewed independently by a second author. Data were extracted to a bespoke form and synthesised using a narrative review. The quality of included studies was appraised using the Mixed Methods Appraisal Tool.

Sixteen studies were included in the synthesis, which together included a total of 538 people with dementia. Study methods and quality varied. Psychosocial interventions delivered on wards included music therapy (five studies), multisensory interventions (four studies), multicomponent interventions (two studies), technology-based interventions (two studies), massage interventions (two studies) and physical exercise (one study). Reduction in distress and improvement in wellbeing was demonstrated inconsistently across studies. Delivering interventions in a caring and individualised way responding to patient need facilitated implementation. Lack of staff time and understanding of interventions, as well as high levels of staff turnover, were barriers to implementation.

This review highlights a striking lack of research and therefore evidence base for the use of psychosocial interventions to reduce distress in this vulnerable population, despite current healthcare guidelines. More research is needed to understand which psychosocial interventions can reduce distress and improve wellbeing on inpatient mental health dementia wards, and how interventions should be delivered, to establish clinical and cost effectiveness and minimise staff burden.

Peer Review reports

The already high prevalence of dementia and the significant predicted increase in those diagnosed with the condition in the coming decades has been widely documented [ 1 ]. Behavioural and psychological symptoms of dementia, which can include agitation, anxiety, depression, sleep disturbances, hallucinations, apathy, and disinhibition, are experienced by 80% of people with dementia in the UK [ 2 ]. Throughout this paper we refer to these as distress or distress behaviours, using preferred language by people with dementia reflecting that distress can be caused by symptoms of dementia and/or be an expression of unmet needs [ 3 ].

Inpatient mental health dementia wards, also known as psychiatric wards, provide care for people with dementia experiencing acute levels of distress that is putting their safety or the safety of others at risk [ 4 , 5 ]. The aim of the mental health admission is to assess and treat the crisis, including distress behaviours. In the UK, people are often detained using the provisions of the Mental Health Act 2007 meaning they can be treated without their consent, and admission often follows a breakdown of care in the home or care home, which can be traumatic for the person with dementia and their family caregiver(s) [ 6 , 7 ]. Caring for this population is complex as many have multiple long term conditions, and may need palliative care as they come to end of life [ 5 , 8 ]. A recent systematic review of the characteristics and outcomes of patients on these wards internationally highlights that little is known about current standards of practice and how best to deliver care in this setting [ 5 ].

The National Institute for Health and Care Excellence (NICE), who provide evidence-based recommendations for care in the UK, emphasise that psychosocial interventions, also described as nonpharmacological interventions, should be the first line of treatment for distress behaviours in dementia care [ 9 ]. NICE defines psychosocial interventions as interventions that require specific competencies for delivery, are supported by relevant training and supervision, and provide an enhanced level of intervention [ 10 ].

Increasingly such interventions are manualised and their effectiveness to reduce distress and support wellbeing for people with dementia in residential care settings has been tested [ 11 , 12 , 13 ]. However, there are still significant gaps in dementia care research and practice [ 14 ]. In particular, little is known about what psychosocial interventions have been delivered in inpatient mental health dementia care, and whether these were helpful. This is concerning as these wards provide specialist care for those who cannot be safely cared for in residential care, and pharmacological interventions, such as antipsychotic medication, are frequently used to manage distress with concomitant increase in risk of falls, strokes and death [ 4 , 15 ]. Further understanding of the current research on inpatient mental health dementia wards, including which psychosocial interventions have been delivered and how, positive and negative patient outcomes, and the facilitators and barriers to implementation, is needed to inform future research and practice.

To understand the current literature on this topic, a systematic review of psychosocial interventions in inpatient mental health dementia care was conducted. Based on expert-by-experience and stakeholder feedback, the review focussed on interventions that aim to reduce distress or improve wellbeing for people with dementia, as this is the primary focus of the admission. The following review questions were established:

What are the characteristics of psychosocial interventions designed to improve wellbeing and reduce distress for patients within inpatient mental health dementia wards?

What are the positive and negative outcomes for patients receiving these interventions?

What are the facilitators and barriers to successful implementation?

This systematic review follows the PRISMA reporting guidelines, and is registered on PROSPERO (CRD42023429983) [ 16 ].

Search strategy

A systematic search of the databases MEDLINE, CINAHL, PsycINFO, and Psychology and Behavioural Sciences Collection was conducted on the EBSCOhost platform, with an additional search on Scopus. Searches were piloted and performed in May 2023. The search strategy was developed with a librarian experienced in systematic reviews and conducted by NT. Reference lists of included studies were examined, and backward and forward citation searches conducted on Google Scholar.

Search terms were: (old* OR elder* OR geriatric* OR senior*) AND ((Psychiatr* OR psychogeriatric* OR “mental health”) N2 (inpatient* OR ward* OR unit* OR acute)) AND (dementia OR alzheimer* OR “cognitive impairment” OR “memory loss”) AND (psychosocial OR psychological OR psychotherapy OR mental health intervention OR nonpharmacological OR person-centred).

Search results were exported to an online software, Rayyan, for screening [ 17 ]. All titles and abstracts were screened by NT, with one third of results independently reviewed by EW. Where there was uncertainty, the full text was retrieved. Screening of the full texts was conducted by NT, with one third independently reviewed by EW. All reasons for exclusion were recorded. At both stages of screening, discrepancies were resolved between the two authors following discussion. Where additional information was required to inform inclusion decisions, authors were contacted via email.

Quality assessment of all included articles was conducted by NT using the Mixed Methods Appraisal Tool (MMAT), with one third conducted independently by EW [ 18 ]. This tool is not designed to give a score or inform inclusion and exclusion decisions, but provides a framework for assessing qualitative, quantitative and mixed methods studies. One article included authors of this current review (NT, HOM, and BRU) and so was assessed by EW to minimise bias. In case of uncertainty or discrepancies, decisions were discussed between NT and EW to reach consensus without the need to involve a third reviewer.

Inclusion and exclusion criteria

Inclusion and exclusion criteria were developed and outlined using an adapted PICOS framework (see Supplementary File 1 for justification for the criteria):

Population: Intervention actively involves patients with dementia, with a diagnosis from a diagnostic criteria or from a clinician. Studies where results for patients with a formal diagnosis cannot be separated from those with other cognitive impairments or other mental health diagnoses were not included.

Intervention: Psychosocial intervention, using the NICE definition: requires specific competencies for delivery, is supported by relevant training and supervision, and provides an enhanced level of intervention [ 10 ]. An additional definition for psychosocial interventions was helpful in clarifying inclusion, in particular for aspects relating to the aims of the intervention [ 19 ].

Context: Mental health or psychiatric ward providing specialist inpatient care for people with dementia in any country. Studies where results for inpatients and community patients cannot be separated were not included.

Outcome: Outcomes related to reduced distress or improved wellbeing for the person with dementia. Outcomes must be measured using a standardised questionnaire, or where qualitative data or researcher-designed tool is used, the measurement tool must be published and clearly described to enable quality assessment.

Study type: Presenting novel findings of any design, conducted internationally, published in a peer-reviewed journal in English. No restrictions for date of publication were given.

Data extraction and synthesis

Data were extracted to a bespoke data extraction form by NT, checked by EW, recording: author(s); date; country; setting; study design; study participants (include dementia stage and type); aims; intervention (dosage, frequency, duration, mode of delivery); interventionist (training); measurement tools (frequency of use); main findings (positive and negative outcomes); and facilitators and barriers to implementation (who reported these). Due to anticipated heterogeneity of interventions, a narrative synthesis was conducted using the tabulation to synthesise data in relation to the stated research questions, following the guidance of Popay et al. [ 20 ]. Facilitators and barriers to implementation were coded using inductive coding, and grouped into themes using thematic analysis [ 21 ]. Based on a previous scoping of the literature, interventions were grouped by type of intervention. Where there were two or more studies looking at a similar intervention these were combined to create a new category. Where studies reported outcomes not relating to people with dementia, for example for staff or family members, data were not extracted as this is outside the scope of the review questions.

The online searches retrieved 1221 articles. After removal of 355 duplicates, 866 titles and abstracts were screened. Of these, 835 articles were excluded, with full texts retrieved for 31 articles. Eight articles met the inclusion criteria (see Figure 1 for exclusion reasons). An additional eight articles were included from searching reference lists and citation searches of included articles. A total of 16 articles, involving 16 separate studies, are included in this review.

PRISMA diagram of study selection procedure

Study characteristics

Study characteristics are displayed in Table  1 . Half of the studies were conducted in the United Kingdom (5 studies) and the United States of America (3 studies), while two took place in Canada and Japan, and one in Finland, Switzerland and Germany respectively. It was not possible to clarify where one study was conducted [ 22 ]. Articles were published between 1998 and 2023. Methods used included randomised controlled trials [ 23 , 24 , 25 , 26 ], non-randomised trials [ 27 , 28 , 29 ], quantitative descriptive methods [ 22 , 30 , 31 , 32 ], mixed methods [ 33 , 34 ], and qualitative studies [ 35 , 36 , 37 ]. Outcomes were measured using standardised quantitative tools [ 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 ], non-standardised quantitative tools [ 22 , 32 , 33 ], biophysiological measures such as pulse and saliva samples [ 23 , 27 , 29 , 33 ], qualitative data collection [ 33 , 34 , 35 , 36 , 37 ], and routinely collected ward data [ 24 , 26 , 28 , 30 , 34 ].

The majority of studies investigated a psychosocial intervention on one inpatient mental health ward, while one looked at two wards [ 34 ], and another included three wards [ 26 ]. There was a combined total of 538 participants across studies, ranging from four to 175 participants. For details of participant characteristics, see Table  1 .

Quality Appraisal

Results from the MMAT showed the varying quality of the included studies, with an average (both mean and mode) of four out of seven criteria met across all studies, ranging from one to seven (l Supplementary File 2). The two screening questions applied to all studies were not consistently met, with two studies not clearly stating the research questions [ 30 , 36 ], and four not clearly demonstrating they collected appropriate data to answer research questions [ 22 , 30 , 35 , 36 ]. However, due to the small number of studies meeting inclusion criteria, these are included in the synthesis.

Intervention characteristics

The types of interventions delivered included music therapy (five studies [ 25 , 29 , 34 , 36 , 37 ]), multisensory interventions (four studies [ 24 , 30 , 31 , 33 ]), multicomponent interventions (two studies [ 22 , 28 ]), technology-based interventions, such as using applications or watching videos on tablets, (two studies [ 32 , 35 ]), massage interventions (two studies [ 23 , 27 ]), and physical exercise (one study [ 26 ]),.

Stated aims of the interventions were wide ranging, with the majority (15 studies) citing multiple aims. The most common aims related to reducing distress behaviours (also referred to as immediate, responsive or negative behaviours) [ 29 , 31 , 33 , 34 , 35 , 36 ], reducing agitation [ 23 , 24 , 30 , 32 ], reducing neuropsychiatric or behavioural and psychological symptoms of dementia [ 25 , 26 , 27 , 28 ], and improving activities of daily living and functional abilities [ 22 , 24 , 27 , 28 ]. Other aims included the feasibility and acceptability of the intervention in relation to the population [ 32 ] and the environment [ 25 , 35 ], improving mood and wellbeing [ 31 , 36 , 37 ], quality of life [ 22 ], quality of care [ 35 ], social interaction and engagement [ 22 , 35 , 36 , 37 ], and cognition [ 27 , 29 ], as well as reducing apathy [ 24 ], use of psychotropic medication [ 26 , 28 ], and stress (including biomarkers for stress) [ 23 , 27 , 29 ].

Intervention delivery was led by ward staff in eight studies (including nurses, care assistants and volunteers) [ 22 , 23 , 27 , 28 , 30 , 32 , 33 , 35 ], four of which specified that training was provided [ 23 , 27 , 28 , 33 ]. Training included ad hoc delivery to individuals as required, and group training ranging from two hours to 5.5 days. In five studies the intervention was delivered by a music therapist [ 25 , 29 , 34 , 36 , 37 ], with all but one specifying that the therapist was accredited with the relevant healthcare board [ 29 ], and three of which stated that ward staff supported in the sessions [ 29 , 36 , 37 ]. An occupational therapist delivered the intervention in one study, although training was not stated [ 31 ]. The interventionist was not specified in two studies [ 24 , 26 ].

Most studies delivered the intervention on an individual basis [ 23 , 24 , 25 , 27 , 30 , 31 , 32 , 33 , 35 ], while six interventions were delivered on a group basis [ 22 , 26 , 29 , 34 , 36 , 37 ]. One multicomponent intervention study included both group and individual sessions [ 28 ].

Intervention frequency ranged from weekly [ 22 , 34 , 36 , 37 ], to twice a week [ 23 , 25 , 29 ], and more than twice a week [ 26 , 27 , 28 , 31 ], with three interventions conducted as needed [ 30 , 32 , 33 ]. The dosage (i.e. length of each session) was reported by 13 studies, with five lasting up to 30 min [ 23 , 24 , 27 , 30 , 31 ], six between 31and 60 min [ 25 , 28 , 29 , 34 , 36 , 37 ], and two over 60 min [ 22 , 26 ]. The duration of the intervention period was reported by 11 studies with the majority running for up to four weeks [ 23 , 25 , 26 , 31 ], or five to ten weeks [ 22 , 27 , 29 , 37 ], and others lasting four months [ 36 ], one year [ 34 ], and two years [ 28 ].

Intervention outcomes

Music therapy intervention outcomes.

A reduction in agitation and distress behaviours, and increase in positive moods and behaviours, was reported in four of the five music therapy interventions on days when the intervention was delivered [ 29 , 34 , 36 , 37 ], one of which also reporting a reduction in biomarkers for stress [ 29 ]. Two of these studies found that a minority of participants displayed increased frustration or agitation during group music therapy sessions [ 36 , 37 ]. One study suggested that this could be a response from the participant to being drawn out of passivity [ 36 ], and another that the open nature of the group enabled participants to leave if they chose to [ 37 ]. However, one study reported no reduction in agitation or distress behaviours when music therapy was compared to an active control, though the groups were not comparable at baseline and it was not clear whether participants had adhered to the assigned intervention [ 25 ].

Multisensory intervention outcomes

All of the multisensory interventions reported short term positive outcomes relating to reduction in agitation and distress behaviours and increases in positive moods and interactive behaviours during sessions [ 24 , 30 , 31 , 33 ], with one study reporting this lasted up to one hour post intervention [ 30 ]. Additional reported outcomes were improved independence in activities of daily living [ 24 ], and reduction in apathy [ 24 ]. No change was reported for aggressive behaviours [ 30 ], wellbeing [ 31 ], heart rate [ 33 ], and prescribed medication [ 24 ].

Multicomponent, massage, technology-based and physical exercise intervention outcomes

Outcomes for massage interventions were inconclusive. Two studies reported a reduction in biomarkers for stress following massage [ 23 , 27 ], with one study, which accounted for confounding factors in the analysis, reaching statistical significance [ 27 ]. One study found no change in cognition but a significant reduction in aggression [ 27 ], while one found no difference in agitation [ 23 ], although authors suggest this could be because scores for agitation were low at baseline, and quality assessment showed that reported outcome data were not complete.

For multicomponent interventions, reported outcomes were conflicting. One study reported short term development of group cohesion, reduction in anxiety and changes in social interactions following weekly movement and sensory stimulation groups [ 22 ]. However, another found no significant differences between the intervention group, receiving group and individual music and physical exercise, and a control group of previous patient cohorts receiving standard care, although data suggested a reduction in anxiety and worsening of sleep and nighttime behaviour [ 28 ]. This study was a randomised controlled trial with a large number of participants, but it was not clear whether the intervention was administered as intended and confounding factors were not accounted for in the design and analysis.

Reported findings for technology-based interventions suggest positive changes in mood and reduction in anxiety, agitation and resistance to care [ 32 , 35 ]. However, one intervention using simulated presence through recorded videos of family members, found that videos with too many people could cause a negative response [ 35 ].

Finally, a study of a physical exercise intervention found a significant reduction in agitation, lability and verbal aggression in the intervention group, but no reduction in physical aggression or prescribed medication [ 26 ]. This study also reported that participants did not adhere to the assigned intervention.

Facilitators and barriers to implementation

All except one [ 31 ] of the included studies reported facilitators and/or barriers to implementation of the psychosocial intervention in the ward setting. Most were reported by the researchers, but some were reflections from staff, with one [ 37 ] also including feedback from family members. Inductive coding of reported facilitators and barriers led to the emergence of three themes: factors relating to the interventionist, factors relating to the intervention, and factors relating to the ward environment.

Factors relating to the interventionist

Researchers, staff and family members reported that staff support and understanding of the intervention, and delivering it with a caring approach enabling patients to express themselves and interact as they were able in the moment, facilitated implementation [ 22 , 32 , 34 , 35 , 37 ]. Researchers reported that the provision of supervision supported understanding [ 32 ], and family members and staff stated that observing the positive effects of the intervention with opportunities for positive interactions with patients were additional facilitators [ 37 ]. One study reported that nurse initiation of the intervention without referral to more senior staff members for approval supported implementation [ 30 ]. Barriers to implementation support these findings, with five studies, two of which reported staff feedback, stating that lack of understanding, scepticism of the intervention, and resistance to having close relationships with patients, were barriers to implementation and effectiveness [ 23 , 27 , 34 , 35 , 37 ]. This included staff reported fears about using equipment incorrectly or causing negative effects [ 33 ].

Factors relating to the intervention

Seven studies, two reporting staff responses, stated that the ability to individualise the intervention to patient preference, ability and the patient’s culture facilitated implementation [ 22 , 24 , 29 , 30 , 32 , 34 , 37 ]. In addition, researchers and staff in four studies reported that utilising nonverbal methods of communication, such as touch and music, enabled emotional expression, increased engagement and attention, and helped deepen the relationship between participants [ 27 , 29 , 34 , 37 ]. Other facilitating elements reported by researchers were safe, easy and accessible delivery [ 35 ], and gradually increasing the length of the intervention [ 24 ], while staff reported using good quality video and audio materials as supporting factors [ 35 ]. Factors reported by researchers as barriers to implementation of interventions were overstimulation for the person with dementia [ 35 ], and not being tailored to the cognitive abilities of the individual, such as concentration, with one study reporting that this was particularly evident towards the beginning of the hospital stay [ 28 , 35 ]. Additionally, how interventions were introduced to the wards could be a barrier to implementation including a lack of clear plans for implementation in the design [ 33 ], and introducing multiple interventions simultaneously [ 28 ].

Factors relating to the ward environment

Elements relating to the ward environment were cited as both facilitators and barriers to implementation. Enabling factors reported by staff and researchers were the ability to create a calm space on the ward [ 22 , 35 ], regular intervention delivery, which may enable a trusting relationship to be established between patient and interventionist [ 23 , 26 , 27 , 29 ], and timing the intervention around patients’ needs and ward routines [ 23 , 26 , 27 ]. Inhibiting factors reported by researchers were rigid timing of intervention delivery to fit around ward routines [ 23 ], a clinical focus on behaviour rather than mood on the ward [ 36 ], lack of staff time to support and deliver interventions [ 28 , 37 ], high levels of staff turnover, and not having regular access to an appropriate space [ 33 ]. In addition, one study suggested that patients being in late stages of dementia could be a barrier to engaging in interventions [ 25 ]. However, in this study, treatment groups were not comparable at baseline and the intervention did not appear to be individualised to the patient [ 25 ].

This review provides a systematic, narrative analysis of psychosocial interventions reported on inpatient mental health dementia wards, the outcomes for patients, staff and families, and the factors influencing implementation. The 16 included studies were small and of varying quality, but suggest that psychosocial interventions may help reduce distress experienced by people with dementia on these wards. The lack of good quality research is particularly striking given that NICE guidelines call for psychosocial interventions as the first line of treatment for people with dementia experiencing distress, and these wards provide care for those experiencing the highest levels of distress in our communities [ 4 , 9 ]. There is therefore a critical need for more research in this area, as reported in previous systematic reviews [ 5 ].

The research included in this review was of varying methodological quality and mostly in early stages of research development, with small samples and using single sites. This is reflected in the results of the MMAT with studies not consistently stating the research questions or demonstrating data collected were appropriate to answer research questions. This limits the comparability of results between studies, and the generalisability of findings to other settings. In addition, justification for the chosen intervention, the way it was delivered, and the theory for how and why it is expected to reduce distress and improve wellbeing, was poorly reported.

Overall findings suggest that psychosocial interventions, in particular music therapy and multisensory interventions, may be helpful in reducing distress and potentially improving wellbeing, although findings were not consistent. This is supported by a reduction in stress biomarkers in some included studies, suggesting interventions could have a biophysiological impact on people with dementia which enables a reduction in distress [ 23 , 27 , 29 ]. However, the need for careful intervention design and delivery were highlighted by reported negative outcomes including worsening sleep behaviour and overstimulation [ 28 , 35 ]. The potential challenges of implementing psychosocial interventions in this ward environment were shown. In particular, most interventions relied on staff for delivery, but lack of staff time and understanding of the intervention, and high levels of staff turnover, were barriers to implementation.

Findings from this review suggest that psychosocial interventions should be mainly nonverbal, person-centred, culturally sensitive, and delivered flexibly by a trained and skilled interventionist who is able to respond and regulate arousal in the moment. They should also minimise reliance on staff to deliver them and provide adequate training for staff to understand the potential benefits of the intervention. This has implications for policy, with psychosocial interventions reviewed against these criteria to increase their usefulness and helpfulness in reducing distress for people with dementia on mental health wards. In particular, policies should support training for staff to deliver specific psychosocial interventions, with accompanying funding for this post above the current staffing on wards, and the inclusion of mandatory training on interventions for all staff. Additionally, policies should include the development of standards for dementia friendly ward environments to ensure that psychosocial interventions can be implemented, including having private spaces available to deliver individual and small group interventions.

However, included studies do not provide evidence for which interventions should be delivered, how and when to deliver them, the support needed for implementation, and how this links with the wider care plan and support for the individual. There was also a lack of evidence for the involvement and impact for family members, with only one [ 37 ] study mentioning their involvement. Future research should consult current guidelines on developing and evaluating complex interventions, such as those from the Medical Research Council [ 38 ]. Involving people with lived experience, such as staff, family members and patients, in the design of interventions and studies will be crucial to supporting feasibility of delivery and helpfulness [ 39 , 40 ]. Once these factors are identified, multi-site, randomised and masked studies are needed to establish clinical and cost effectiveness. Outcomes should include the effectiveness of interventions to reduce distress, with definitions and outcome measures agreed with staff, patients and family members; the cost-effectiveness of the intervention; the impact on staff time, care delivery and the ward environment; the impact on patient, staff and family member wellbeing; the impact on patient length of stay, including communication with the discharge destination; and the impact on use of as-needed (pro re nata) and prescribed medication.

Limitations of this review include the use of a second reviewer for only one third of the titles and abstracts and full text articles during the screening process meaning it is possible that articles were wrongly excluded during screening. Only articles written in English were included due to resource limitations, and articles not published in peer-review journals were excluded, potentially missing ward-based evaluations and audits. Additionally, the varied language used to describe inpatient mental health wards internationally further complicated the screening process. Studies specifying they took place on hospital wards and focused on distress behaviours in dementia were included, and any uncertainties were discussed with the team. Due to the small number of studies expected to meet the criteria a time limit was not used so some studies may not reflect current practice.

Further research is required to increase our understanding of whether specific psychosocial interventions can help reduce distress and improve wellbeing for people with dementia on inpatient mental health dementia wards, and how these should be delivered. This can enable the development of cost-effective toolkits and protocols for psychosocial interventions that are feasible to deliver with limited resource and have been shown to reduce distress and improve wellbeing on inpatient mental health dementia wards.

Data availability

All data generated or analysed during this study are included in this published article [and its supplementary information files].

Abbreviations

Emma Wolverson

Mixed Methods Appraisal Tool

National Institute for Health and Care Excellence

Naomi Thompson

Participant, Intervention, Control, Outcome, Study Type

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Acknowledgements

We would like to acknowledge Jolene Cushion, subject librarian at Anglia Ruskin University, for their advice in designing the search strategy.

Funding for the Doctoral Scholarship for NT was provided by Anglia Ruskin University. BRU’s post is part-funded by a donation from Gnodde Goldman Sachs. This research was supported by the National Institute for Health and Care Research (NIHR) Cambridge Biomedical Research Centre (grant BRC-1215-20014). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

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Thompson, N., Hsu, MH., Odell-Miller, H. et al. Characteristics, outcomes, facilitators and barriers for psychosocial interventions on inpatient mental health dementia wards: a systematic review. BMC Geriatr 24 , 364 (2024). https://doi.org/10.1186/s12877-024-04965-8

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Research: More People Use Mental Health Benefits When They Hear That Colleagues Use Them Too

• Laura M. Giurge,
• Lauren C. Howe,
• Zsofia Belovai,
• Guusje Lindemann,
• Sharon O’Connor

A study of 2,400 Novartis employees around the world found that simply hearing about others’ struggles can normalize accessing support at work.

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“I almost scheduled an appointment about a dozen times. But no, in the end I never went. I just wasn’t sure if my problems were big enough to warrant help and I didn’t want to take up someone else’s time unnecessarily.”

• Laura M. Giurge is an assistant professor at the London School of Economics, and a faculty affiliate at London Business School. Her research focuses on time and boundaries in organizations, workplace well-being, and the future of work. She is also passionate about translating research to the broader public through interactive and creative keynote talks, workshops, and coaching. Follow her on LinkedIn  here .
• Lauren C. Howe is an assistant professor in management at the University of Zurich. As head of research at the Center for Leadership in the Future of Work , she focuses on how human aspects, such as mindsets, socioemotional skills, and leadership, play a role in the changing world of work.
• Zsofia Belovai is a behavioral science lead for the organizational performance research practice at MoreThanNow, focusing on exploring how employee welfare can drive KPIs.
• Guusje Lindemann is a senior behavioral scientist at MoreThanNow, in the social impact and organizational performance practices, working on making the workplace better for all.
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• Volume 33, Issue 5
• Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review
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• http://orcid.org/0000-0002-8498-7329 Manjekah Dunn 1 , 2 ,
• Iva Strnadová 3 , 4 , 5 ,
• Jackie Leach Scully 4 ,
• Jennifer Hansen 3 ,
• Julie Loblinzk 3 , 5 ,
• Skie Sarfaraz 5 ,
• Chloe Molnar 1 ,
• Elizabeth Emma Palmer 1 , 2
• 1 Faculty of Medicine & Health , University of New South Wales , Sydney , New South Wales , Australia
• 2 The Sydney Children's Hospitals Network , Sydney , New South Wales , Australia
• 3 School of Education , University of New South Wales , Sydney , New South Wales , Australia
• 4 Disability Innovation Institute , University of New South Wales , Sydney , New South Wales , Australia
• 5 Self Advocacy Sydney , Sydney , New South Wales , Australia
• Correspondence to Dr Manjekah Dunn, Paediatrics & Child Health, University of New South Wales Medicine & Health, Sydney, New South Wales, Australia; manjekah.dunn{at}unsw.edu.au

Objective To identify factors acting as barriers or enablers to the process of healthcare consent for people with intellectual disability and to understand how to make this process equitable and accessible.

Data sources Databases: Embase, MEDLINE, PsychINFO, PubMed, SCOPUS, Web of Science and CINAHL. Additional articles were obtained from an ancestral search and hand-searching three journals.

Eligibility criteria Peer-reviewed original research about the consent process for healthcare interventions, published after 1990, involving adult participants with intellectual disability.

Synthesis of results Inductive thematic analysis was used to identify factors affecting informed consent. The findings were reviewed by co-researchers with intellectual disability to ensure they reflected lived experiences, and an easy read summary was created.

Results Twenty-three studies were included (1999 to 2020), with a mix of qualitative (n=14), quantitative (n=6) and mixed-methods (n=3) studies. Participant numbers ranged from 9 to 604 people (median 21) and included people with intellectual disability, health professionals, carers and support people, and others working with people with intellectual disability. Six themes were identified: (1) health professionals’ attitudes and lack of education, (2) inadequate accessible health information, (3) involvement of support people, (4) systemic constraints, (5) person-centred informed consent and (6) effective communication between health professionals and patients. Themes were barriers (themes 1, 2 and 4), enablers (themes 5 and 6) or both (theme 3).

Conclusions Multiple reasons contribute to poor consent practices for people with intellectual disability in current health systems. Recommendations include addressing health professionals’ attitudes and lack of education in informed consent with clinician training, the co-production of accessible information resources and further inclusive research into informed consent for people with intellectual disability.

PROSPERO registration CRD42021290548.

• Decision making
• Healthcare quality improvement
• Patient-centred care
• Quality improvement
• Standards of care

Data availability statement

Data are available upon reasonable request. Additional data and materials such as data collection forms, data extraction and analysis templates and QualSyst assessment data can be obtained by contacting the corresponding author.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ .

https://doi.org/10.1136/bmjqs-2023-016113

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What is already known on this topic

People with intellectual disability are frequently excluded from decision-making processes and not provided equal opportunity for informed consent, despite protections outlined in the United Nations Convention on the Rights of Persons with Disabilities.

People with intellectual disability have the capacity and desire to make informed medical decisions, which can improve their well-being, health satisfaction and health outcomes.

What this review study adds

Health professionals lack adequate training in valid informed consent and making reasonable adjustments for people with intellectual disability, and continue to perpetuate assumptions of incapacity.

Health information provided to people with intellectual disability is often inaccessible and insufficient for them to make informed decisions about healthcare.

The role of support people, systemic constraints, a person-centred approach and ineffective healthcare communication also affect informed consent.

How this review might affect research, practice or policy

Health professionals need additional training on how to provide a valid informed consent process for people with intellectual disability, specifically in using accessible health information, making reasonable adjustments (e.g., longer/multiple appointments, options of a support person attending or not, using plain English), involving the individual in discussions, and communicating effectively with them.

Inclusive research is needed to hear the voices and opinions of people with intellectual disability about healthcare decision-making and about informed consent practices in specific healthcare settings.

Introduction

Approximately 1% of the world’s population have intellectual disability. 1 Intellectual disability is medically defined as a group of neurodevelopmental conditions beginning in childhood, with below average cognitive functioning and adaptive behaviour, including limitations in conceptual, social and practical skills. 2 People with intellectual disability prefer an alternative strength-based definition, reflected in the comment by Robert Strike OAM (Order of Australia Medal): ‘We can learn if the way of teaching matches how the person learns’, 3 reinforcing the importance of providing information tailored to the needs of a person with intellectual disability. A diagnosis of intellectual disability is associated with significant disparities in health outcomes. 4–7 Person-centred decision-making and better communication have been shown to improve patient satisfaction, 8 9 the physician–patient relationship 10 and overall health outcomes 11 for the wider population. Ensuring people with intellectual disability experience informed decision-making and accessible healthcare can help address the ongoing health disparities and facilitate equal access to healthcare.

Bodily autonomy is an individual’s power and agency to make decisions about their own body. 12 Informed consent for healthcare enables a person to practice bodily autonomy and is protected, for example, by the National Safety and Quality Health Service Standards (Australia), 13 Mental Capacity Act (UK) 14 and the Joint Commission Standards (USA). 15 In this article, we define informed consent according to three requirements: (1) the person is provided with information they understand, (2) the decision is free of coercion and (3) the person must have capacity. 16 For informed consent to be valid, this process must be suited to the individual’s needs so that they can understand and communicate effectively. Capacity is the ability to give informed consent for a medical intervention, 17 18 and the Mental Capacity Act outlines that ‘a person must be assumed to have capacity unless it is established that he lacks capacity’ and that incapacity can only be established if ‘all practicable steps’ to support capacity have been attempted without success. 14 These assumptions of capacity are also decision-specific, meaning an individual’s ability to consent can change depending on the situation, the choice itself and other factors. 17

Systemic issues with healthcare delivery systems have resulted in access barriers for people with intellectual disability, 19 despite the disability discrimination legislation in many countries who are signatories to the United Nations (UN) Convention on the Rights of Persons with Disabilities. 20 Patients with intellectual disability are not provided the reasonable adjustments that would enable them to give informed consent for medical procedures or interventions, 21 22 despite evidence that many people with intellectual disability have both the capacity and the desire to make their own healthcare decisions. 21 23

To support people with intellectual disability to make independent health decisions, an equitable and accessible informed consent process is needed. 24 However, current health systems have consistently failed to provide this. 21 25 To address this gap, we must first understand the factors that contribute to inequitable and inaccessible consent. To the best of our knowledge, the only current review of informed consent for people with intellectual disability is an integrative review by Goldsmith et al . 26 Many of the included articles focused on assessment of capacity 27–29 and research consent. 30–32 The review’s conclusion supported the functional approach to assess capacity, with minimal focus on how the informed consent processes can be improved. More recently, there has been a move towards ensuring that the consent process is accessible for all individuals, including elderly patients 33 and people with aphasia. 34 However, there remains a paucity of literature about the informed consent process for people with intellectual disability, with no systematic reviews summarising the factors influencing the healthcare consent process for people with intellectual disability.

To identify barriers to and enablers of the informed healthcare consent process for people with intellectual disability, and to understand how this can be made equitable and accessible.

A systematic literature review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocols (PRISMA-P) systematic literature review protocol. 35 The PRISMA 2020 checklist 36 and ENhancing Transparency in REporting the synthesis of Qualitative research (ENTREQ) reporting guidelines were also followed. 37 The full study protocol is included in online supplemental appendix 1 .

Supplemental material

No patients or members of the public were involved in this research for this manuscript.

Search strategy

A search strategy was developed to identify articles about intellectual disability, consent and healthcare interventions, described in online supplemental appendix 2 . Multiple databases were searched for articles published between January 1990 to January 2022 (Embase, MEDLINE, PsychINFO, PubMed, SCOPUS, Web of Science and CINAHL). These databases include healthcare and psychology databases that best capture relevant literature on this topic, including medical, nursing, social sciences and bioethical literature. The search was limited to studies published from 1990 as understandings of consent have changed since then. 38 39 This yielded 4853 unique papers which were imported into Covidence, a specialised programme for conducting systematic reviews. 40

Study selection

Citation screening by abstract and titles was completed by two independent researchers (MD and EEP). Included articles had to:

Examine the informed consent process for a healthcare intervention for people with intellectual disability.

Have collected more than 50% of its data from relevant stakeholders, including adults with intellectual disability, families or carers of a person with intellectual disability, and professionals who engage with people with intellectual disability.

Report empirical data from primary research methodology.

Be published in a peer-reviewed journal after January 1990.

Be available in English.

Full text screening was completed by two independent researchers (MD and EEP). Articles were excluded if consent was only briefly discussed or if it focused on consent for research, capacity assessment, or participant knowledge or comprehension. Any conflicts were resolved through discussion with an independent third researcher (IS).

Additional studies were identified through an ancestral search and by hand-searching three major journals relevant to intellectual disability research. Journals were selected if they had published more than one included article for this review or in previous literature reviews conducted by the research team.

Quality assessment

Two independent researchers (MD and IS) assessed study quality with the QualSyst tool, 41 which can assess both qualitative and quantitative research papers. After evaluating the distribution of scores, a threshold value of 55% was used, as suggested by QualSyst 41 to exclude poor-quality studies but capture enough studies overall. Any conflicts between the quality assessment scores were resolved by a third researcher (EEP). For mixed-method studies, both qualitative and quantitative quality scores were calculated, and the higher value used.

Data collection

Two independent researchers (MD and JH) reviewed each study and extracted relevant details, including study size, participant demographics, year, country of publication, study design, data analysis and major outcomes reported. Researchers used standardised data collection forms designed, with input from senior researchers with expertise in qualitative research (IS and EEP), to extract data relevant to the review’s research aims. The form was piloted on one study, and a second iteration made based on feedback. These forms captured data on study design, methods, participants, any factors affecting the process of informed consent and study limitations. Data included descriptions and paragraphs outlining key findings, the healthcare context, verbatim participant quotes and any quantitative analyses or statistics. Missing or unclear data were noted.

Data analysis

A pilot literature search showed significant heterogeneity in methodology of studies, limiting the applicability of traditional quantitative analysis (ie, meta-analysis). Instead, inductive thematic analysis was chosen as an alternative methodology 42 43 that has been used in recent systematic reviews examining barriers and enablers of other health processes. 44 45 The six-phase approach described by Braun and Clarke was used. 46 47 A researcher (MD) independently coded the extracted data of each study line-by-line, with subsequent data grouped into pre-existing codes or new concepts when necessary. Codes were reviewed iteratively and grouped into categories, subthemes and themes framed around the research question. Another independent researcher (JH) collated and analysed the data on study demographics, methods and limitations. The themes were reviewed by two senior researchers (EEP and IS).

Qualitative methods of effect size calculations have been described in the literature, 48 49 which was captured in this review by the number of studies that identified each subtheme, with an assigned frequency rating to compare their relative significance. Subthemes were given a frequency rating of A, B, C or D if they were identified by >10, 7–9, 4–6 or <3 articles, respectively. The overall significance of each theme was estimated by the number of studies that mentioned it and the GRADE framework, a stepwise approach to quality assessment using a four-tier rating system. Each study was evaluated for risk of bias, inconsistency, indirectness, imprecision and publication bias. 50 51 Study sensitivity was assessed by counting the number of distinct subthemes included. 52 The quality of findings was designated high, moderate or low depending on the frequency ratings, the QualSyst score and the GRADE scores of studies supporting the finding. Finally, the relative contributions of each study were evaluated by the number of subthemes described, guided by previously reported methods for qualitative reviews. 52

Co-research

The findings were reviewed by two co-researchers with intellectual disability (JL and SS), with over 30 years combined experience as members and employees of a self-advocacy organisation. Guidance on the findings and an easy read summary was produced in line with best-practice inclusive research 53 54 over multiple discussions. Input from two health professional researchers (MD and EEP) provided data triangulation and sense-checking of findings.

Twenty-three articles were identified ( figure 1 ): 14 qualitative, 6 quantitative and 3 mixed-methods. Two papers included the same population of study participants: McCarthy 55 and McCarthy, 56 but had different research questions. Fovargue et al 57 was excluded due to a quality score of 35%. Common quality limitations were a lack of verification procedures to establish credibility and limited researcher reflexivity. No studies were excluded due to language requirements (as all were in English) or age restrictions (all studies had majority adult participants).

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PRISMA 2020 flowchart for the systematic review. 36

Studies were published from 1999 to 2020 and involved participant populations from the UK (n=18), USA (n=3), Sweden (n=1) and Ireland (n=1). Participant numbers ranged from 9 to 604 (median 21), and participants included people with intellectual disability (n=817), health professionals (n=272), carers and support people (n=48), and other professionals that work with people with intellectual disability (n=137, community service agency directors, social workers, administrative staff and care home staff). Ages of participants ranged from 8 to 84 years, though only Aman et al 58 included participants <18 years of age. This study was included as the article states very few children were included. Studies examined consent in different contexts, including contraception and sexual health (6/23 articles), 58–60 medications (5/23 articles), 58–62 emergency healthcare, 63 cervical screening, 64 community referrals, 58–61 65 mental health, 66 hydrotherapy, 64 blood collection 67 and broad decision-making consent without a specific context. 65 68–71 A detailed breakdown of each study is included in online supplemental appendix 3 .

Six major themes were identified from the studies, summarised in figure 2 . An overview of included studies showing study sensitivity, effect size, QualSyst and GRADE scores is given in online supplemental appendix 4 . Studies with higher QualSyst and GRADE scores contributed more to this review’s findings and tended to include more subthemes; specifically, Rogers et al , 66 Sowney and Barr, 63 Höglund and Larsson, 72 and McCarthy 55 and McCarthy. 56 Figure 3 gives the easy read version of theme 1, with the full easy read summary in online supplemental appendix 5 .

Summary of the identified six themes and subthemes.

Theme 1 of the easy read summary.

Theme 1—Health professionals’ attitudes and lack of education about informed consent

Health professionals’ attitudes and practices were frequently (18/21) identified as factors affecting the informed consent process, with substantial evidence supporting this theme. Studies noted the lack of training for health professionals in supporting informed consent for people with intellectual disability, their desire for further education, and stereotypes and discrimination perpetuated by health professionals.

Lack of health professional education on informed consent and disability discrimination legislation

Multiple studies reported inconsistent informed consent practices, for various reasons: some reported that health professionals ‘forgot’ to or ‘did not realise consent was necessary’, 63 73 but inconsistent consent practices were also attributed to healthcare providers’ unfamiliarity with consent guidelines and poor education on this topic. Carlson et al 73 reported that only 44% of general practitioners (GPs) were aware of consent guidelines, and there was the misconception that consent was unnecessary for people with intellectual disability. Similarly, studies of psychologists 66 and nurses 63 found that many were unfamiliar with their obligations to obtain consent, despite the existence of anti-discrimination legislation. People with intellectual disability describe feeling discriminated against by health professionals, reflected in comments such as ‘I can tell, my doctor just thinks I’m stupid – I'm nothing to him’. 74 Poor consent practices by health professionals were observed in Goldsmith et al , 67 while health professionals surveyed by McCarthy 56 were unaware of their responsibility to provide accessible health information to women with intellectual disability. Improving health professional education and training was suggested by multiple studies as a way to remove this barrier. 63 65–67 69 73

Lack of training on best practices for health professions caring for people with intellectual disability

A lack of training in caring for and communicating with people with intellectual disability was also described by midwives, 72 psychologists, 66 nurses, 63 pharmacists 61 and GPs. 56 72 75 Health professionals lacked knowledge about best practice approaches to providing equitable healthcare consent processes through reasonable adjustments such as accessible health information, 56 60 66 longer appointments times, 60 72 simple English 62 67 and flexible approaches to patient needs. 63 72

Health professionals’ stereotyping and assumptions of incapacity

Underlying stereotypes contributed to some health professionals’ (including nurses, 63 GPs 56 and physiotherapists 64 ) belief that people with intellectual disability lack capacity and therefore, do not require opportunities for informed consent. 56 64 In a survey of professionals referring people with intellectual disability to a disability service, the second most common reason for not obtaining consent was ‘patient unable to understand’. 73

Proxy consent as an inappropriate alternative

People with intellectual disability are rarely the final decision-maker in their medical choices, with many health providers seeking proxy consent from carers, support workers and family members, despite its legal invalidity. In McCarthy’s study (2010), 18/23 women with intellectual disability said the decision to start contraception was made by someone else. Many GPs appeared unaware that proxy consent is invalid in the UK. 56 Similar reports came from people with intellectual disability, 55 56 60 64 69 76 health professionals (nurses, doctors, allied health, psychologists), 56 63 64 66 77 support people 64 77 and non-medical professionals, 65 73 and capacity was rarely documented. 56 62 77

Exclusion of people with intellectual disability from decision-making discussions

Studies described instances where health professionals made decisions for their patients with intellectual disability or coerced patients into a choice. 55 72 74 76 77 In Ledger et al 77 , only 62% of women with intellectual disability were involved in the discussion about contraception, and only 38% made the final decision, and others stated in Wiseman and Ferrie 74 : ‘I was not given the opportunity to explore the different options. I was told what one I should take’. Three papers outlined instances where the choices of people with intellectual disability were ignored despite possessing capacity 65 66 69 and when a procedure continued despite them withdrawing consent. 69

Theme 2—Inadequate accessible health information

Lack of accessible health information.

The lack of accessible health information was the most frequently identified subtheme (16/23 studies). Some studies reported that health professionals provided information to carers instead, 60 avoided providing easy read information due to concerns about ‘offending’ patients 75 or only provided verbal information. 56 67 Informed consent was supported when health professionals recognised the importance of providing medical information 64 and when it was provided in an accessible format. 60 Alternative approaches to health information were explored, including virtual reality 68 and in-person education sessions, 59 with varying results. Overall, the need to provide information in different formats tailored to an individual’s communication needs, rather than a ‘one size fits all’ approach, was emphasised by both people with intellectual disability 60 and health professionals. 66

Insufficient information provided

Studies described situations where insufficient information was provided to people with intellectual disability to make informed decisions. For example, some people felt the information from their GP was often too basic to be helpful (Fish et al 60 ) and wanted additional information on consent forms (Rose et al 78 ).

Theme 3—The involvement of support people

Support people (including carers, family members and group home staff) were identified in 11 articles as both enablers of and barriers to informed consent. The antagonistic nature of these findings and lower frequency of subthemes are reflected in the lower quality assessments of evidence.

Support people facilitated communication with health professionals

Some studies reported carers bridging communication barriers with health to support informed consent. 63 64 McCarthy 56 found 21/23 of women with intellectual disability preferred to see doctors with a support person due to perceived benefits: ‘Sometimes I don’t understand it, so they have to explain it to my carer, so they can explain it to me easier’. Most GPs in this study (93%) also agreed that support people aided communication.

Support people helped people with intellectual disability make decisions

By advocating for people with intellectual disability, carers encouraged decision-making, 64 74 provided health information, 74 77 emotional support 76 and assisted with reading or remembering health information. 55 58 76 Some people with intellectual disability explicitly appreciated their support person’s involvement, 60 such as in McCarthy’s 55 study where 18/23 participants felt supported and safer when a support person was involved.

Support people impeded individual autonomy

The study by Wiseman and Ferrie 74 found that while younger participants with intellectual disability felt family members empowered their decision-making, older women felt family members impaired their ability to give informed consent. This was reflected in interviews with carers who questioned the capacity of the person with intellectual disability they supported and stated they would guide them to pick the ‘best choice’ or even over-ride their choices. 64 Studies of psychologists and community service directors described instances where the decision of family or carers was prioritised over the wishes of the person with intellectual disability. 65 66 Some women with intellectual disability in McCarthy’s studies (2010, 2009) 55 56 appeared to have been coerced into using contraception by parental pressures or fear of losing group home support.

Theme 4—Systemic constraints within healthcare systems

Time restraints affect informed consent and accessible healthcare.

Resource limitations create time constraints that impair the consent process and have been identified as a barrier by psychologists, 66 GPs, 56 hospital nurses 63 and community disability workers. 73 Rogers et al 66 highlighted that a personalised approach that could improve informed decision-making is restricted by inflexible medical models. Only two studies described flexible patient-centred approaches to consent. 60 72 A survey of primary care practices in 2007 reported that most did not modify their cervical screening information for patients with intellectual disability because it was not practical. 75

Inflexible models of consent

Both people with intellectual disability 76 and health professionals 66 recognised that consent is traditionally obtained through one-off interactions prior to an intervention. Yet, for people with intellectual disability, consent should ideally be an ongoing process that begins before an appointment and continues between subsequent ones. Other studies have tended to describe one-off interactions where decision-making was not revisited at subsequent appointments. 56 60 72 76

Lack of systemic supports

In one survey, self-advocates highlighted a lack of information on medication for people with intellectual disability and suggested a telephone helpline and a centralised source of information to support consent. 60 Health professionals also want greater systemic support, such as a health professional specialised in intellectual disability care to support other staff, 72 or a pharmacist specifically to help patients with intellectual disability. 61 Studies highlighted a lack of guidelines about healthcare needs of people with intellectual disabilities such as contraceptive counselling 72 or primary care. 75

Theme 5—Person-centred informed consent

Ten studies identified factors related to a person-centred approach to informed consent, grouped below into three subthemes. Health professionals should tailor their practice when obtaining informed consent from people with intellectual disability by considering how these subthemes relate to the individual. Each subtheme was described five times in the literature with a relative frequency rating of ‘C’, contributing to overall lower quality scores.

Previous experience with decision-making

Arscott et al 71 found that the ability of people with intellectual disability to consent changed with their verbal and memory skills and in different clinical vignettes, supporting the view of ‘functional’ capacity specific to the context of the medical decision. Although previous experiences with decision-making did not influence informed consent in this paper, other studies suggest that people with intellectual disability accustomed to independent decision-making were more able to make informed medical decisions, 66 70 and those who live independently were more likely to make independent healthcare decisions. 56 Health professionals should be aware that their patients with intellectual disability will have variable experience with decision-making and provide individualised support to meet their needs.

Variable awareness about healthcare rights

Consent processes should be tailored to the health literacy of patients, including emphasising available choices and the option to refuse treatment. In some studies, medical decisions were not presented to people with intellectual disability as a choice, 64 and people with intellectual disability were not informed of their legal right to accessible health information. 56

Power differences and acquiescence

Acquiescence by people with intellectual disability due to common and repeated experiences of trauma—that is, their tendency to agree with suggestions made by carers and health professionals, often to avoid upsetting others—was identified as an ongoing barrier. In McCarthy’s (2009) interviews with women with intellectual disability, some participants implicitly rejected the idea that they might make their own healthcare decisions: ‘They’re the carers, they have responsibility for me’. Others appeared to have made decisions to appease their carers: ‘I have the jab (contraceptive injection) so I can’t be blamed for getting pregnant’. 55 Two studies highlighted that health professionals need to be mindful of power imbalances when discussing consent with people with intellectual disability to ensure the choices are truly autonomous. 61 66

Theme 6—Effective communication between health professionals and patients

Implementation of reasonable adjustments for verbal and written information.

Simple language was always preferred by people with intellectual disability. 60 67 Other communication aids used in decision-making included repetition, short sentences, models, pictures and easy read brochures. 72 Another reasonable adjustment is providing the opportunity to ask questions, which women with intellectual disability in McCarthy’s (2009) study reported did not occur. 55

Tailored communication methods including non-verbal communication

Midwives noted that continuity of care allows them to develop rapport and understand the communication preferences of people with intellectual disability. 72 This is not always possible; for emergency nurses, the lack of background information about patients with intellectual disability made it challenging to understand their communication preferences. 63 The use of non-verbal communication, such as body language, was noted as underutilised 62 66 and people with intellectual disability supported the use of hearing loops, braille and sign language. 60

To the best of our knowledge, this is the first systematic review investigating the barriers and enablers of the informed consent process for healthcare procedures for people with intellectual disability. The integrative review by Goldsmith et al 26 examined capacity assessment and shares only three articles with this systematic review. 69 71 73 Since the 2000s, there has been a paradigm shift in which capacity is no longer considered a fixed ability that only some individuals possess 38 39 but instead as ‘functional’: a flexible ability that changes over time and in different contexts, 79 reflected in Goldsmith’s review. An individual’s capacity can be supported through various measures, including how information is communicated and how the decision-making process is approached. 18 80 By recognising the barriers and enablers identified in this review, physicians can help ensure the consent process for their patients with intellectual disability is both valid and truly informed. This review has highlighted the problems of inaccessible health information, insufficient clinical education on how to make reasonable adjustments and lack of person-centred trauma-informed care.

Recommendations

Health professionals require training in the informed consent process for people with intellectual disability, particularly in effective and respectful communication, reasonable adjustments and trauma-informed care. Reasonable adjustments include offering longer or multiple appointments, using accessible resources (such as easy read information or shared decision-making tools) and allowing patient choices (such as to record a consultation or involve a support person). Co-researchers reported that many people with intellectual disability prefer to go without a support person because they find it difficult to challenge their decisions and feel ignored if the health professional only talks to the support person. People with intellectual disability also feel they cannot seek second opinions before making medical decisions or feel pressured to provide consent, raising the possibility of coercion. These experiences contribute to healthcare trauma. Co-researchers raised the importance of building rapport with the person with intellectual disability and of making reasonable adjustments, such as actively advocating for the person’s autonomy, clearly stating all options including the choice to refuse treatment, providing opportunities to contribute to discussions and multiple appointments to ask questions and understand information. They felt that without these efforts to support consent, health professionals can reinforce traumatic healthcare experiences for people with intellectual disability. Co-researchers noted instances where choices were made by doctors without discussion and where they were only given a choice after requesting one and expressed concern that these barriers are greater for those with higher support needs.

Co-researchers showed how these experiences contributed to mistrust of health professionals and poorer health outcomes. In one situation, a co-researcher was not informed of a medication’s withdrawal effects, resulting in significant side-effects when it was ceased. Many people with intellectual disability describe a poor relationship with their health professionals, finding it difficult to trust health information provided due to previous traumatic experiences of disrespect, coercion, lack of choice and inadequate support. Many feel they cannot speak up due to the power imbalance and fear of retaliation. Poor consent practices and lack of reasonable adjustments directly harm therapeutic alliances by reducing trust, contribute to healthcare trauma and lead to poorer health outcomes for people with intellectual disability.

Additional education and training for health professionals is urgently needed in the areas of informed consent, reasonable adjustments and effective communication with people with intellectual disability. The experiences of health professionals within the research team confirmed that there is limited training in providing high-quality healthcare for people with intellectual disability, including reasonable adjustments and accessible health information. Co-researchers also suggested that education should be provided to carers and support people to help them better advocate for people with intellectual disability.

Health information should be provided in a multimodal format, including written easy read information. Many countries have regulation protecting the right to accessible health information and communication support to make an informed choice, such as UK’s Accessible Information Standard, 81 and Australia’s Charter of Health Care Rights, 24 yet these are rarely observed. Steps to facilitate this include routinely asking patients about information requirements, system alerts for an individual’s needs or routinely providing reasonable adjustments. 82 Co-researchers agreed that there is a lack of accessible health information, particularly about medications, and that diagrams and illustrations are underutilised. There is a critical need for more inclusive and accessible resources to help health professionals support informed consent in a safe and high-quality health system. These resources should be created through methods of inclusive research, such as co-production, actively involving people with intellectual disability in the planning, creation, and feedback process. 53

Strengths and limitations

This systematic review involved two co-researchers with intellectual disability in sense-checking findings and co-creating the easy read summary. Two co-authors who are health professionals provided additional sense-checking of findings from a different stakeholder perspective. In future research, this could be extended by involving people with intellectual disability in the design and planning of the study as per recommendations for best-practice inclusive research. 53 83

The current literature is limited by low use of inclusive research practices in research involving people with intellectual disability, increasing vulnerability to external biases (eg, inaccessible questionnaires, involvement of carers in data collection, overcompliance or acquiescence and absence of researcher reflexivity). Advisory groups or co-research with people with intellectual disability were only used in five studies. 58 60 68 74 76 Other limitations include unclear selection criteria, low sample sizes, missing data, using gatekeepers in patient selection and predominance of UK-based studies—increasing the risk of bias and reducing transferability. Nine studies (out of 15 involving people with intellectual disability) explicitly excluded those with severe or profound intellectual disability, reflecting a selection bias; only one study specifically focused on people with intellectual disability with higher support needs. Studies were limited to a few healthcare contexts, with a focus on consent about sexual health, contraception and medications.

The heterogeneity and qualitative nature of studies made it challenging to apply traditional meta-analysis. However, to promote consistency in qualitative research, the PRISMA and ENTREQ guidelines were followed. 36 37 Although no meta-analyses occurred, the duplication of study populations in McCarthy 2009 and 2010 likely contributed to increased significance of findings reported in both studies. Most included studies (13/23) were published over 10 years ago, reducing the current relevance of this review’s findings. Nonetheless, the major findings reflect underlying systemic issues within the health system, which are unlikely to have been resolved since the articles were published, as the just-released final report of the Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability highlights. 84 There is an urgent need for more inclusive studies to explore the recommendations and preferences of people with intellectual disability about healthcare choices.

Informed consent processes for people with intellectual disability should include accessible information and reasonable adjustments, be tailored to individuals’ needs and comply with consent and disability legislation. Resources, guidelines and healthcare education are needed and should cover how to involve carers and support people, address systemic healthcare problems, promote a person-centred approach and ensure effective communication. These resources and future research must use principles of inclusive co-production—involving people with intellectual disability at all stages. Additionally, research is needed on people with higher support needs and in specific contexts where informed consent is vital but under-researched, such as cancer screening, palliative care, prenatal and newborn screening, surgical procedures, genetic medicine and advanced therapeutics such as gene-based therapies.

Ethics statements

Patient consent for publication.

Not applicable.

Ethics approval

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Supplementary data.

This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

• Data supplement 1
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• Data supplement 5

Contributors MD, EEP and IS conceived the idea for the systematic review. MD drafted the search strategy which was refined by EEP and IS. MD and EEP completed article screening. MD and IS completed quality assessments of included articles. MD and JH completed data extraction. MD drafted the original manuscript. JL and SS were co-researchers who sense-checked findings and were consulted to formulate dissemination plans. JL and SS co-produced the easy read summary with MD, CM, JH, EEP and IS. MD, JLS, EEP and IS reviewed manuscript wording. All authors critically reviewed the manuscript and approved it for publication. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted. MD is the guarantor responsible for the overall content of this manuscript.

Funding This systematic literature review was funded by the National Health & Medical Research Council (NHMRC), Targeted Call for Research (TCR) into Improving health of people with intellectual disability. Research grant title "GeneEQUAL: equitable and accessible genomic healthcare for people with intellectual disability". NHMRC application ID: 2022/GNT2015753.

Competing interests None declared.

Provenance and peer review Not commissioned; externally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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• Editorial It is up to healthcare professionals to talk to us in a way that we can understand: informed consent processes in people with an intellectual disability Jonathon Ding Richard Keagan-Bull Irene Tuffrey-Wijne BMJ Quality & Safety 2024; 33 277-279 Published Online First: 30 Jan 2024. doi: 10.1136/bmjqs-2023-016830

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• Published: 17 April 2024

Breaking down barriers to mental healthcare access in prison: a qualitative interview study with incarcerated males in Norway

• Line Elisabeth Solbakken 1 , 2 ,
• Svein Bergvik 3 &
• Rolf Wynn 1 , 4  

BMC Psychiatry volume  24 , Article number:  292 ( 2024 ) Cite this article

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Mental health problems are highly prevalent in prison populations. Incarcerated persons generally come from disadvantaged backgrounds and are living under extraordinary conditions while in prison. Their healthcare needs are complex compared to the general population. Studies have found that incarcerated individuals are reluctant to seek help and that they experience challenges in accessing mental healthcare services. To some extent, seeking treatment depends on the degree of fit between potential users and health services, and actual use might be a better indication of accessibility than the fact that services are available. This study aimed to explore individual and systemic facilitators and barriers to accessing mental healthcare in a prison context.

An analytical approach drawing on elements of constructivist Grounded theory was the methodological basis of this study. Fifteen male participants were recruited from three prisons in Northern Norway. Data was collected through in-depth interviews on topics such as help-seeking experiences, perceived access to services and availability of health information.

We found that distrust in the system, challenges with the referral routines, worries about negative consequences, and perceived limited access to mental healthcare were barriers to help-seeking among incarcerated individuals. How prison officers, and healthcare personnel respond to incarcerated persons reporting mental distress could also be critical for their future willingness to seek help. Providing information about mental health and available services, initiating outreaching mental health services, and integrating mental health interventions into treatment programs are examples of efforts that might reduce barriers to accessing services.

Conclusions

Facilitating access to mental health services is crucial to accommodate the mental health needs of those incarcerated. This study provides insights into the complex interplay of individual, social and systemic factors that may contribute to the utilization of mental health care among incarcerated persons. We suggest that correctional and healthcare systems review their practices to facilitate access to healthcare for people in prison.

Peer Review reports

Mental health of people in prison

The rates of mental disorders are considerably higher among incarcerated individuals than in the general population [ 1 , 2 , 3 , 4 ]. Co-morbidities are common, and around 20% of incarcerated individuals have concurrent mental and substance use disorders [ 5 ]. They are at increased risk for all-cause mortality, self-harm, violence, and victimization, and suicide rates are about 3–6 times higher among incarcerated males relative to males in the broader population [ 6 ]. Adverse life experiences and disadvantaged living conditions from an early age may explain the observed accumulation of mental health problems in prison populations worldwide [ 7 , 8 ]. Genetic predispositions combined with environmental stressors are implicated in the development of mental disorders [ 9 , 10 ]. People in prison generally experience low educational achievements, low income, and unstable housing. Thus, the poor mental health of prison populations is caused by a complex interplay of social, environmental, and genetic factors [ 7 , 11 ]. In addition to the pre-existing burdens, incarcerated individuals are facing prison–specific challenges such as loss of autonomy, social isolation, bullying and violence that may exacerbate mental health issues [ 12 , 13 , 14 , 15 ]. Considering the elevated rates of mental health problems in prison, facilitating access to mental health services is crucial to accommodate the needs of those incarcerated.

Access to mental health services

The treatment gap refers to the proportion of individuals with mental health problems within a specific community that require treatment without receiving it [ 16 ]. Variable access to mental healthcare and high levels of unmet mental health needs are universal challenges in communities across the world [ 17 , 18 ]. Even when health services are available, individual and systemic barriers may hinder their use. In a narrow sense, access to healthcare may be considered equivalent to available services. However, some argue that a more meaningful way to define access is the “degree of fit” between the potential users and health services [ 19 ]. For instance, if services are accessible in terms of transportation and treatment costs and whether they are compatible with potential users’ personal attitudes, beliefs and preferences. “Having access” can be understood as the potential for using available mental health services. “Gaining access”, is the individual process of choosing to use those services [ 20 ]. Within this frame of reference, access to services is more precisely defined by the actual use of services.

Mental health help-seeking

Across settings and populations, the majority of those suffering from mental health problems do not seek treatment [ 21 , 22 , 23 ]. The literature on help-seeking gives insight into the intrapersonal factors involved in accessing mental health care. Within this context, help-seeking has been defined as: " an adaptive coping process that is the attempt to obtain external assistance to deal with a mental health concern” [ 24 ]. The process of seeking help involves becoming aware of a mental health problem that may require intervention; articulating the psychological challenges in a way that can be understood by others; awareness of help sources that are available and accessible; and a willingness to talk about the mental health problem to available help sources [ 25 ]. Throughout the help-seeking process, personal thoughts and feelings become increasingly interpersonal as an individual confides in and seeks support from others. It is not uncommon to share mental health concerns with informal sources of support such as friends and family prior to, or even instead of, seeking professional help [ 26 ]. Moreover, informal networks are found to facilitate but may also discourage professional formal help-seeking for mental health problems [ 27 , 28 ].

The theory of planned behavior (TPB), a well-known model within behavior change research, may also provide a framework for understanding how personal attitudes and social influences are implicated in accessing healthcare. Subjective norms, attitudes, and perceived behavioral control are elements of TPB that are particularly important for understanding the help-seeking process [ 29 ]. In this context, subjective norms refer to a person’s beliefs about other peoples’ practice or approval of help-seeking and are related to expectations of social support in pursuing professional help. Attitudes refer to appraisals of seeking professional mental help as beneficial or harmful and a judgement of whether help-seeking would be constructive compared to alternative behaviors. Perceived behavioral control can be divided into self-efficacy (the confidence that one can seek help), and controllability (the extent of personal control in the help-seeking process). A recent review found that attitudes and perceived behavioral control predict help-seeking intentions across different population groups and cultures [ 30 ].

Access to mental health services in prison

Equity is essential in healthcare to ensure that the health system meets the needs of different groups of people and individuals [ 20 ]. “The principle of equivalence” is a widely endorsed standard for healthcare in correctional settings [ 31 ]. This principle is laid down in the United Nations´ Nelson Mandela Rules. Rule number 24 states that: “Prisoners should enjoy the same standards of health care that are available in the community, and should have access to necessary health-care services free of charge without discrimination on the grounds of their legal status” [ 32 ] (p.8) However, some argue that equal standards are not sufficient to meet the complex needs of incarcerated individuals and that mental healthcare in prison must be more intensive and integrative than services provided in the community [ 33 , 34 , 35 ]. In reality there are several reports of shortcomings in the delivery of mental healthcare in prison in many countries across the world, as mental disorders in incarcerated persons are underdiagnosed and undertreated [ 6 , 34 ]. Studies from Canada, the US, and the UK indicate that a significant proportion of incarcerated people with mental health problems have not received adequate treatment [ 36 , 37 , 38 , 39 ]. Suggested explanations for unmet needs are underfunding, failure in screening procedures and quality at reception, demand for more mental health knowledge among prison staff, and possible underrating of the severity of mental health problems by the prison administrations to reduce treatment costs [ 36 , 37 , 38 , 39 , 40 ]. Taken together these reports suggest that mental health services do not fit the complex needs of incarcerated persons in high-income countries. There is less knowledge about the situation in low- and middle-income countries. However, the elevated rates of mental disorders in these countries suggest that unmet needs among incarcerated persons are a widespread challenge [ 1 ].

Mental health help-seeking in prison

Evidence suggests that the immense burden of mental disorders among people in prison is not matched by a proportional use of mental healthcare [ 41 ]. Several reports from various correctional settings have documented that incarcerated persons are reluctant to seek help for mental health problems [ 41 ]. Among the reported barriers to help-seeking in prison are confidentiality concerns [ 42 ], fear of stigma associated with a diagnosis [ 43 ], a preference for self-management or informal support [ 44 ], lack of knowledge of psychological services [ 42 , 44 ] and distrust in the system [ 45 ]. In addition, systemic factors may influence access to healthcare in prison. The culture in all-male prisons typically demands that those imprisoned mask their vulnerabilities by adopting a tough and dominant demeanor [ 46 ]. Experiencing mental illness and receiving professional mental health treatment is also associated with an increased risk of victimization in incarcerated individuals [ 47 ].

Mental health literacy (MHL) is a concept that includes the knowledge and attitudes that influence how people manage their mental health needs [ 48 ]. Having sufficient knowledge and access to information about mental health and mental health services can be a prerequisite for seeking professional help [ 49 ]. For people living in the community, seeking online information and advice is an important strategy for gaining knowledge about how to cope with mental health challenges [ 50 , 51 , 52 ]. For security reasons, access to the Internet is typically severely limited for those imprisoned [ 53 , 54 ]. Hence, this essential mental health information source is largely unavailable to them. Accordingly, incarcerated individuals are reliant on finding mental health information through information pamphlets, books, TV programs, newspapers or consulting healthcare professionals [ 55 ]. Some argue that limited access to online information and digital health services may have consequences for the well-being and successful rehabilitation of those incarcerated [ 53 , 56 , 57 ]. Thus, there are reasons to believe that restricted access to mental health information may also affect help-seeking and access to healthcare for incarcerated individuals.

The rationale for the current study

Fostering health-promoting environments and adequate access to mental healthcare within prisons is a public health imperative increasingly acknowledged in the literature [ 33 ]. Moreover, the mental health of incarcerated persons is a matter of public safety since untreated severe mental disorders are associated with a higher risk of recidivism [ 58 , 59 ]. People in prison retain their right to health services, and in principle, incarcerated persons have access to mental health services. A vital question, however, is how incarcerated persons experience gaining access and how this affects their actual use of services. Existing research on the provision of mental healthcare in prisons, particularly within a Scandinavian context, is sparse, leaving significant knowledge gaps. The question of access to health information for incarcerated persons is similarly understudied. This study aimed to investigate how incarcerated persons experience individual and systemic factors that facilitate or impede access to mental healthcare in prison.

The Helsinki Declaration of Medical Research involving human subjects and services laid the basis of the ethical considerations of this study [ 60 ]. The study was approved by the Data Protection Officer of the University Hospital of North Norway (No. 02415). The Norwegian Correctional system, which is responsible for the welfare of incarcerated individuals, approved of the study (Ref. 200900463-347). The Regional Health Research Ethics Committee concluded that the project was outside their mandate (Ref. 40,701).

The principles of voluntariness and informed consent are central to human subject research. Individuals in prison are considered vulnerable due to their restricted freedom and autonomy, poor health status, higher incidence of learning disabilities, and lower literacy levels. Consequently, additional precautions are required to ensure that research with incarcerated participants is conducted ethically [ 61 ]. User participation in designing research that includes vulnerable groups is crucial to achieving this objective [ 61 , 62 ]. Measures in accordance with recommendations were taken to ensure consent information that is complete, relevant, and understandable [ 63 ]. A user representative from Way-Back, an organization that supports incarcerated persons with reentry to their communities, contributed to the project’s planning. The user representative provided input on information about the study, research questions, the interview guide and how to conduct the interviews. The input was used to tailor information and for conducting the interviews in accordance with the constraints of the prison contexts and the needs of the incarcerated individuals. The choice of whether to reimburse participants in prison studies is debated. Because of the relative deprivation of prison life, some argue that even small incentives could potentially result in undue influence for participation in research [ 64 ]. For this reason, we chose to abstain from offering reimbursement for the participants in this study.

Study context

At any given time, about 3000 persons are serving a sentence in Norway, of which 5.6% are women and 26.2% are non-Norwegian citizens [ 65 ]. A recent study found that almost 60% of incarcerated persons in Norway had a diagnosed mental disorder, together with a 33% rise in the one-year prevalence of mental disorders between the years 2010–2019 [ 66 ]. Thus, the proportion of people with mental disorders entering prison has been increasing. In Norway, access to necessary healthcare is considered a basic human right and is legislated in the Patient’s Rights Act section 2 [ 67 ]. Healthcare is primarily tax-funded, with a nominal service fee and a relatively low cap on yearly individual costs [ 68 ]. Norway has committed to “the principle of equivalence” meaning that those imprisoned retain their right to healthcare equal to that of the general population [ 31 ]. Prison health services serve incarcerated persons with milder mental health problems and are accessible by self-referral through a paper-based request system. The prison health services can refer those who experience moderate to severe mental disorders to specialist mental health services, and treatment is often provided in prison by mental health professionals from local hospitals For people imprisoned in Norway, healthcare and medications are free of charge [ 69 ], eliminating one significant barrier to mental healthcare access [ 70 ]. Furthermore, as the municipalities and local hospitals provide health services - the importation of services promotes equity and that services are independent of the correctional system, thereby strengthening the rights of people in prison [ 71 ].

A study found that incarcerated persons in Norway were reluctant to seek help for mental health problems from prison health services unless they had concurrent sleep or substance use problems [ 72 ]. A survey by Bjørngaard et al. [ 73 ] found lower patient satisfaction with prison health services compared to people using community health services and that those with mental health problems were less satisfied compared to incarcerated patients with other health challenges. A survey representative of the Norwegian prison population found that 20% of incarcerated males sample reported that they had received mental health services, while 25% reported that they had been in need of mental health services in prison but had not received any [ 11 ]. More recent reports suggest that mental health services are insufficient to meet the needs of those imprisoned in Norway and that incarcerated individuals referred due to their severe mental illness may not be admitted to specialist services for in-patient assessment and treatment [ 74 , 75 ]. These reports indicate that mental health services do not fit the complex needs of incarcerated persons in Norway and that there are potential obstacles in their access to mental healthcare.

Study design

This study was underpinned by relativist epistemology which is based on the assumption of multiple individual realities that allow for different understandings of the same phenomenon [ 76 ]. The study design was suitable for exploring and explaining commonly experienced individual, social, cultural and structural factors that influence help-seeking and access to mental healthcare for incarcerated individuals. The study incorporates vital Grounded Theory (GT) components, including initial coding, categorizing data, constant comparative methods involving inductive and abductive reasoning, and memoing [ 77 ]. The use of theoretical sampling, which is rare in prison research due to ethical and practical constraints [ 78 ], was not employed in this study. Data collection concluded once additional data no longer contributed new insights or further elaborated the developed categories.

Preconceptions

The first author, a clinical community psychologist and a PhD student, worked part-time as a prison officer for two years during her psychology education. This experience gave her an insider’s view of the correctional system, inevitably influencing her initial perceptions. Before conducting the interviews, she held a somewhat optimistic view of the correctional system’s capacity to support and enhance the mental health of those incarcerated. However, this perspective was challenged through the narratives of the study participants, who conveyed powerful personal accounts that highlighted substantial barriers to obtaining mental health services within the prison environment. The other two authors, serving as supervisors, are also researchers and mental health professionals with considerable clinical experience. Their diverse backgrounds contributed to a supervisory dynamic that adresssed the research topic’s complexities. Throughout the study, the authors engaged in a process of collaborative reflection, concerned with maintaining a balance between engaging with participant stories and sustaining a critical stance towards the data. These discussions were essential in helping the first author navigate an empathetic understanding of the participant’s experiences with the necessary analytical objectivity required for rigorous qualitative research.

Participants and study settings

Fifteen males serving a prison sentence were recruited from three prisons in Northern Norway. Thirteen of the participants served a sentence at a high security level, while two served at lower security. The participants’ age ranged from the early twenties to the late sixties (M: 43.6 years). Two participants had other nationalities, while the rest were Norwegian citizens. Further details about the participants must be withheld to preserve their privacy. When citing individual participants, they are anonymized by using pseudonyms.

Recruitment

Participants were recruited through posters in the prison ward that conveyed basic information, including the fact that the interviews were confidential and would be recorded. The posters encouraged those interested in participating to approach a contact person for more information. A prison officer, a social worker or a reintegration coordinator were assigned the role as contact persons in the selected prisons. Those who actively approached the contact person were given more comprehensive written information about the study. Requiring an active choice by incarcerated individuals was done to enhance their experience of self-determination and autonomy in their decision to participate. The contact person scheduled appointments with the participants, and the interviewer had no prior knowledge of the participants other than what they presented in the interviews. One potential participant cancelled the interview appointment due to health issues on the interview day and withdrew from the study.

The first author conducted face-to-face, in-depth interviews. The interviews took place in prison visitation rooms or in an office in the health wards. Before the interview, the participants were given information about the study and their rights as research participants and signed a written consent form. The interviewer was alone with the participants during the interview and had a personal alarm as a safety precaution. The interview guide covered topics on knowledge of mental health and available services, help-seeking experiences, and access to mental health information (sample questions provided in Table  1 ). The participants were asked open-ended questions and were invited to speak freely on these topics. Thus, the order and framing of questions varied depending on where they fit into the participants’ narratives. This allowed for following up on the participants’ experiences and may have given the participants an increased sense of control in the interview. The first author who conducted the interviews was attentive to signs of emotional discomfort in participants and avoided pressure on sensitive topics. After the interviews, the participants were encouraged to ask questions and comment on their experience and reminded of their right to withdraw from the study. Nearly all the participants expressed that the experience of participating in the study was positive and that they appreciated the chance to contribute to the research project.

The first author transcribed the audio-recorded interviews in Norwegian, ensuring a verbatim account of the participants’ narratives. The initial eight interviews were transcribed before initiating data analysis. This early examination of the data facilitated a refinement of the interview guide, which was then applied to the subsequent seven interviews to deepen the inquiry. Data collection and analysis were concurrent as the study progressed from the ninth interview, which allowed for immediate integration of new data into the evolving analytical framework. The data was examined using the NVivo 12 software, which supported the systematic organization and analysis of the data. The data was analyzed line-by-line, searching for incidents in the form of recurring beliefs, actions, experiences, and explanations [ 79 ]. The constant comparison method was applied throughout the analysis. In the initial coding phase, incidents were compared to incidents, and through this process underlying recurring concepts and similarities were identified and assigned codes. Subsequently, codes were then compared to codes, and related codes were organized into conceptual categories, reflecting both common features and divergent viewpoints [ 77 ]. In the intermediate coding phase, the data was abstracted into categories which were compared to each other, and relationships between categories were developed and refined. The authors engaged in a collaborative and reflective dialogue throughout this process, meeting regularly to deliberate on preconceptions, the emerging categories and their interpretations. This dynamic exchange was informed by memos that captured analytical decisions, insights, and evolving interpretations, thus guiding the reflective process. In the last stage, advanced coding, a core category which binds the other categories and sub-categories together was developed. Through a collaborative process the categories were substantiated with representative quotes, which, upon completion of the analysis, were translated from Norwegian to English for inclusion in the report. This resulted in a nuanced understanding grounded in the participants’ experiences and the researchers’ interpretative lens.

The data analysis yielded four main categories illustrating the participants’ active engagement in identifying challenges and facilitators for mental healthcare access within the prison environment. The first category, “Mental health awareness,” captures how beliefs and knowledge concerning mental health were influenced by the experiences and constraints inherent to prison life, potentially affecting the pursuit of help and access to healthcare services. The second main category reveals how systemic sub-cultural values can obstruct healthcare access, whereas, on a personal level, fellow inmates served as vital support for obtaining mental health services. The third main category, “Access to mental health care,” examines how organizational and systemic barriers impede access to mental healthcare. The final main category, “Enhancing access to services,” delineates factors that lowered the bar for mental healthcare access. The core category, “Breaking down barriers,” encapsulates the dynamic interplay between incarcerated individuals and the contextual factors that influenced their ability and willingness to access mental healthcare in prison. This central theme also recognizes the collaborative effort between participants and researchers in identifying problem areas and solutions to mental healthcare access, thereby “breaking down barriers”. An outline of these categories is presented in Table  2 .

Mental health awareness

An information void.

Seeking information can be an essential first step for recognizing symptoms of mental illness that may require intervention. Prior to imprisonment, visiting their general practitioner or using online search engines were the preferred methods for finding health information for the participants in this study. In prison, however, access to the Internet is severely limited:

Where can we get information? We do not have access to computers or anything. So, I would have to call someone on the outside to get them to print articles and send them to me by post. So, no. We don’t know our rights, we don’t know about the services available to us, as a matter of fact we know very little. There’s an information void. Stuart

A few of the participants referred to the prison library as a source of information. Some also said that they could talk to health care professionals, correctional officers, or other staff members like the priest, to get mental health information. Fellow incarcerated individuals who had experienced mental health problems and received health services were also mentioned by some participants. The common thread in all suggestions was a dependency on others to access information about mental health. Only a couple of participants had tried to find mental health information during their time in prison. However, they found it difficult to obtain:

The only choice I have is to ask the prison officers to print it [mental health information], but sometimes they don’t want to do it because they think it’s bad. And I have tried to search for psychosis and such in school [in prison], but then the teachers ask why I would seek out such a gloomy subject. It feels a bit complicated to obtain information. Larry

Participants from all three prisons also pointed out the need for more information about mental healthcare in prison:

We have a notice board on the ward (…). The information should be hung there for people to see, that there is a psychologist here, and that you can talk to her. ‘cause I’ve seen little of that sort in here. Liam

One participant underscored that information about available mental health services is particularly important for those with no experience from such services prior to imprisonment:

It [information] must tell you about your opportunities. To normalize it [seeking help] in a way. And the threshold must be low. I think many experience that it is too high. If I hadn’t been in contact with mental health services before I came here, the threshold for seeking help would have been sky high for me as well. Neil

Awareness of mental health issues

Factors in the prison context were fundamental to the participants’ explanations of mental health problems. Many participants attributed the onset or worsening of mental health problems to the shock of imprisonment and to the continuous hardships of prison life. Understanding symptoms as primarily caused by external stressors such as prison hardship may have influenced their appraisals about the need to seek help. As Frank stated:

I’ve always had good mental health. Until I came here, inside these walls. Frank

Frank reported considerable symptoms of post-traumatic stress. Understanding his symptoms as something triggered by the prison living conditions, he did not see how seeking professional help could benefit him. Like many other participants, he insisted that the correctional system needed to change and had lost hope that he could improve his own situation.

In contrast, other participants who attributed their mental health problems to external stressors concluded that they indeed needed help to cope. The suffering they experienced during their first weeks in prison motivated them to seek formal help:

I asked to talk to a psychologist in here. ‘Cause, I felt that I needed to. ‘Cause in the beginning when I came here, it all seemed dark. No matter how hard I tried to do the right thing, there was some sort of dark force that was just pushing on, and the obstacles were piling up. Travis

For some, their main motivation for seeking help was to receive professional validation from healthcare personnel regarding the negative health consequences of their prison experiences. Some also hoped that healthcare professionals could advocate for better living conditions:

And it is good that others [psychologists] can take part in these things. So that it is manifested what prisons actually do to people. Jack

Social influences on help-seeking

Prison culture and mental health stigma.

The participants described how the culture within prison influenced their willingness to talk about mental health issues. The importance of appearing strong and dominant within the prison setting was emphasized by many. According to several participants, the talk at the wards was characterized by attempts to one-up the others’ stories about criminal activities to appear tough. Many also explained that hiding vulnerabilities was critical in the prison community, and some also underlined the potential for victimization for those who were not able to conform to the prison norms:

You are wearing a prison mask. You cannot show weakness. ‘Cause then you’ll soon be a victim, a sitting duck. I have experienced inmates that have, eh mostly stayed in their cells. They have been harassed so badly that they are sitting there crying. The prison milieu can be tough. Neil

Choosing to confide in and seek advice from peers can also have negative consequences. Several of the participants said that it was wise to be careful with who you chose to share mental health related issues with:

Let’s say you talk about your personal feelings, and about your sentence and stuff, right. They can be very nice to you there and then, before they stab you in the back later on, spreading everything you’ve said to destroy you. It is a cynical game. Bobby

Bobby went on to explain that a fellow incarcerated individual could use personal information for harassing, blackmailing and threatening the family of someone who has confided in them, if a conflict should arise. Some of the participants also addressed directly how the prison climate may influence willingness to seek mental health treatment:

They do not want to go to a psychologist and talk. Because then they are seen as weak and not able to cope. Because in prison everyone should be tough. Drug lords and such. But, on the inside they are not like that. Nicky

The role of peers in accessing mental health services

Despite the clear barriers, fellow incarcerated appeared to be an important informal help source for mental health problems. Many of the participants had observed signs of emotional distress among their incarcerated peers and described how they had given them advice and encouragement. According to several participants, those imprisoned also had an essential role in recognizing mental health problems in their peers:

There is no-one who talks to us regularly to check on how we are doing. That’s not a priority here. So, unless some of the inmates take on the role of an officer or a psychologist, then there’s no-one who reports concern (…) There are many inmates who are taking on a role as a social worker, but it’s kinda wrong. They are neither paid for it, nor qualified. They do it because no-one else does. Stuart

Although none of the participants said that they themselves had been prompted to seek help by peers, they told stories of how they had pushed their peers to seek formal help:

A fellow inmate. I could tell he was struggling because he talked to me as the only person. In a way, I was his psychologist. The days when he was down in the dumps, I tried to talk to him (…) And I said, listen up. It’s for your own good. I will write a request form, and we will arrange contact with a psychologist (…) and it will help. Nicky

Experiencing fellow incarcerated people in distress appeared to be common, and participants also explained how they reported to prison officers their concerns about peers with self-harm and suicide plans:

There was a fella’ who told me that he knew exactly how to take his own life (…). “I’ll just do it like this and this and this”. And, uhm. Then he said he was going to do it. And I thought that I would have to report it, and I did. Roy

Roy went on to describe in detail how his reported concern led to a prison officer interrupting the suicide attempt by the fellow incarcerated, thereby saving his life. Several other participants shared similar stories, indicating that peers played a significant role in recognizing and getting help for mental health related problems in prison.

Access to mental healthcare

Self-referral and disempowerment.

In order to access prison healthcare, those imprisoned must write and deliver a paper-based request form. All the participants in this study were aware that this is the way to contact prison healthcare, and most of them knew that the general practitioner working at the prison could refer them to a psychologist or to a psychiatric hospital. Unfortunately, the request form system seemed to amplify the participants’ perceptions of disempowerment. Rather than seeing themselves as agents taking charge of their own situation and health, they were left passively waiting to be contacted after filling out the forms:

You are pacified when you must write a request form to talk to someone. Then you don’t know when they are coming to talk to you. And then it’s like, the problem may be swept under the rug when they finally get to you. Tommy

According to the participants, many of these request forms seemed to disappear, and it could take an exceedingly long time before they got any response to their request:

Many times, when you write a request form it disappears. Nothing happens. Those request forms are worthless most of the time. Keith

There were also several participants who voiced concern over the confidentiality of the request forms even when the forms were delivered in closed envelopes:

We can see for ourselves that they [prison officers] open and read, uhm, confidential information, [lowers his voice] and to put it mildly, uhm, breaches in confidentiality are all too common. It is alarming! Neil

One of the informants also explained that incarcerated persons who had mother tongues other than Norwegian could have problems with understanding and filling out request forms to health, and that forms that were not filled out correctly were of no value. According to Roy and other participants, the correctional system did not give sufficient information and guidance about the request forms:

They might not know how to write, or understand what it [the form] says, you know? Potentially it is severe for that guy, right. It’s garbage! Garbage, that request form. They haven’t received any request from him. Roy

The perceived availability of mental healthcare

The perceptions of accessibility of mental health care varied between the participants. A few of the participants were in active treatment with a psychologist at the time of the interviews, and they had experienced the access as unproblematic. Common for some of these participants was that they had been in treatment before they entered prison:

From sending my request and to receiving an acceptance letter it took one and a half weeks. Less than three weeks later I was in treatment. It was efficient. Much quicker than I’ve ever experienced before. Neil

However, many participants said that they could not access secondary mental health services. There were two notable sub-groups among the participants who perceived that access to specialized psychological treatment was limited. The first group shared stories about living unstructured lives at the edge of society. They seemed to have little confidence in health care and correctional services, and were less hopeful of their own potential of being rehabilitated:

I have tried for several years now, but I didn’t get help. They can say whatever they want about how easy it is to access a psychologist and prison healthcare and everything, but it is not true. Ronny

Two of the participants explained how they would have to take drastic measures such as performing violent acts or acting weird to get help for their mental health problems When Marlon was asked how he could access mental health services he responded:

You would have to either hurt yourself, or someone else, so that they end up in hospital. Marlon

The interviewer asked if it was possible to access mental health services by using less drastic measures, Marlon answered:

Uhm. Naaah. I don’t know. I do not think so. Not from my experience. Marlon

Another sub-group having difficulties accessing mental health services was those in prison for the first time. Most had led more typical lives with stable employment and housing conditions before imprisonment. When they sought mental health services, they were told that these adjustment problems were normal in prison:

I’ve been struggling for several periods here and have said that I wanted to talk to a nurse or a psychologist. And then I was referred to a psychologist. And the psychologist assessed me, and said that: “Nothing’s wrong with you, you are just having a hard time, I cannot help you”. So, you do not get anyone to talk to, unless you- I don’t know what you must have really, but I sure ain’t got it. The nurses say that they haven’t got the time, and the psychologist says that I am not ill. And then I am left to feel bad. In my case, there is no service really. Stuart

Prison officers’ role in mental healthcare and accessing services

Several participants stated that mental health problems and well-being were not high on the prison agenda. Many would have appreciated it if correctional officers on a more regular basis had asked how they were doing and believed that this would have facilitated them to open up and talk about mental health issues.

In my opinion, mental health is forgotten here in a way. Physical activity, movement, workouts, yes. Since I arrived here some months ago, only twice I’ve been asked: “Hi, how are you? Is there something you want to talk about?” Travis

Some also said that they knew people in prison who were unaware of their own need for mental health care or unable to access help, and argued that the correctional system should do more to help these people to access care:

You have the type where people do not get help because they themselves are not able to request help from the prison health services and the prison officers do not see to that they get the help they need. Neil

Some were concerned about how acute health problems were handled in the weekends and evenings when prison health services were unavailable. In these situations, prison officers were left to decide whether or not to contact emergency healthcare services. Several of the participants were not satisfied by this arrangement:

(…) they think that they can make a doctor’s judgement. That they can decide that it is not that important. It is rude. It is trespassing norms. Jack

Some participants told stories of how their peers in prison did not seem to get the help they needed even though it was apparent that they were in a bad state mentally:

I have reported concern about people, before they started cutting themselves and f***ing themselves up. But what worries me, is that even though I voiced my concern to both prison health services and prison officers, no measures were taken. Before it was too late. Stuart

Asking for help from correctional officers could also have consequences. Ronny served at a lower security level. He experienced that his requests to see a psychologist were met by suggestions of transferring him to a higher security level:

I have written request forms: “I need to speak to a psychologist. Immediately”. And then they [the prison officers] are threatening me by saying that they are going to transfer me to a higher security level. They ask if I am going to hurt myself. No, I tell them. I’m not going to hurt myself. I just need to talk to a psychologist. Ronny

Another participant described how he had sometimes cut himself by shards from plates and drinking glass to suppress mental suffering. He explained how he on one occasion used the intercom to notify the officers that they needed to come and pick up a glass that was triggering an urge to self-harm. The participant said that initially a single officer came to his cell to pick up the glass:

A few minutes later there were four officers, and they unlocked the cell door, and there were a lot of questions. I guess they were worried about my mental state, and I said that I appreciated the concern. Then I reminded them that I had asked them to pick up the glass so I would NOT cut myself, so if they were to use that against me, it would be unfair. Tommy

He reassured that the situation had been resolved with the conversation. However, he had the impression that disclosing mental distress to officers could increase the risk for being transferred to a higher security level, or to a security cell.

Enhancing access to services

The perceived advantages of seeking professional help.

There were some commonly experienced benefits of seeking mental healthcare among the participants. Coming off drugs and living under stable conditions in prison provided some participants an opportunity to reflect on their lives and to gather motivation to work on their addiction and mental health problems:

I have been thinking a lot about treatment in an institution. I know how it went the last few times I got out [of prison]. Within half an hour I was sitting there with the needle. And if I don’t do anything before I get out, the same will happen again. I’m trying to prevent it (…) I’ve had treatment for drug and alcohol use before. And back then there was a psychologist who said that, once you’ve been clean for a year, then the brain is back to normal. I can feel it, like, my mindset is already changing . Kurt

For about half of the participants, seeking professional help was related to their motivation for living a law-abiding life after prison. The participants linked substance use to both mental health problems and a criminal lifestyle, and getting treatment was seen as essential for preventing recidivism:

I have lived a rough life, and I have no-one, NO-ONE. How long am I going to live? One doesn’t know. But I’ll be fifty soon. So, I must make it now. I really have to make it now [his voice bursts]. And it depends on many psychological factors. So, I’m choosing to use all the things that I have access to in prison, like treatment for drug addiction. Roy

Although many had previous experience of treatment for their substance use, they still had hopes that treatment could help them. Liam had previously experienced that consultations with a psychologist brought up subjects that was difficult for him to talk about:

I regret that I quit, because it could have done me good. But I guess it got too personal, and it stirred up things. Liam

He also explained that at the time he was more interested in doing drugs than going to therapy. However, he still believed that treatment could help him:

I will probably contact a psychologist, now that I’m about to get treatment for my addictions. It is easier to open up when there are no substances involved. Liam

In summary, seeking professional help for mental health problems was perceived to promote in-prison coping, rehabilitation, and preparation for life outside of prison for most of the participants.

Lowering the bar for accessing mental health services .

Many of the participants expressed skepticism towards ‘the system’. They described how they had been let down and disappointed by the child welfare services, the criminal justice system, and healthcare professionals. Experiences from childhood to adult life had led to a lack of confidence that healthcare personnel and the correctional system and society had their best interest at heart. For them, it was important that healthcare professionals were perceived as genuine and “on their side”:

The experience of being believed and listened to… They do not have to relate, to say that they understand so damn much, ‘cause that’s not really important. Marlon

Several participants said that barriers for talking about mental health were reduced when healthcare personnel reached out in the prison ward. One of the prisoners described two nurses who used to visit the prison wing every day at lunch-hour. He appreciated that it was possible to request a private conversation in the cell, and that he was taken seriously:

They were highly skilled. And they listened. They listened to what you had to say, and they understood you. Tommy

Having previous positive experiences of mental health treatment and knowledge of what to expect from mental health services also seemed to reduce barriers for in-prison help-seeking from some of the participants:

I saw a psychologist on a regular basis, once a week (…). And after six consultations I was past the worst in some sense. I was provided with the tools I needed to cope. Bobby .

This participant had experience with psychological treatment outside of prison and had tried to access mental health services for months in prison. However, he believed his challenges were too mild to get help from a psychologist. He emphasized the need for available low-threshold services for those who suffer from milder mental health problems:

It should be available for everyone who wants it. It should not be embarrassing, it should not be taboo, it should be… A natural part of it, really. Bobby

In addition, when services were provided as standard procedure and a natural part of rehabilitation, they were perceived as less stigmatizing. Nicky described how he was placed on a prison ward that was specialized in substance use treatment:

And when you are placed in that ward, then you are automatically assigned to a psychologist from the substance use clinic, that you can have weekly consultations with. Nicky .

Some also suggested that the systematic screening and assessment of health and social problems also could facilitate access to mental health services and this was suggested as an integral part of healthcare and rehabilitation in prison by some of the participants. Ronny underscored the importance of proper assessment:

What is this person’s problem? Why did he come back? Is there something happening to him on the outside? Could he need help with anything? Maybe someone should ask him? Ronny

Ronny went on describing the nice brochures of the correctional system, with promises of assessment of strengths and needs of individuals, but he claimed that this did not happen in reality. This view was shared by several of the other participants, as they called for more assessment to benefit the mental health and rehabilitation of incarcerated individuals.

Mental health support from different sources

The participants had different preferences regarding where to get help. Support from friends and family was seen as important for most of the participants. However, health professionals could sometimes be preferred over informal or semi-formal sources because of their role in advocating for better living conditions in prison:

I get visits from my family, but I’d like to talk to someone here in prison, so that they could gain awareness of the actual problem. If I’m spitting venom to some random lady that is here as a volunteer with the Red Cross, it’s useless, I think. If I talk to a nurse who works here at this establishment, she could perhaps do something about some of our challenges. Stuart

The cultural competency of health care personnel could also be a key factor in promoting help-seeking and forming a therapeutic alliance with people in prison. Many incarcerated individuals have lived on the edge of society, while most health care personnel, and particularly doctors and psychologists, are from the upper middle class. These cultural differences may form an abyss between the incarcerated individuals and mental healthcare personnel:

A psychologist does not have a criminal record. Now I’m generalizing. But they have performed well in school. Have passed through the system. Highly educated. Their lives have been smooth sailing (…) They have not experienced the shadow side of life. Tommy

This participant had one prior positive experience with a psychologist, but his general impression of psychologists was that they were of no help. He did not feel a connection with any of the others and had written them off completely. He preferred talking to a representative from a user organization who have led a similar life to himself:

I know that they know exactly how I’m feeling. They have served a prison sentence. And they… They have lived experience, and then it’s much easier to listen to what they have to say, because I know it’s not knowledge that they have acquired through reading. Tommy

Prison officers can also be of help to incarcerated people who experience mental health problems. Nicky said that while he was at a lower security level, he had been to a sports event outside prison with an officer and some fellow incarcerated. He had a panic attack because of all the people who kept arriving at the venue and he had to go outside for some fresh air. The prison officer followed him and was understanding, and told Nicky that he had seen many incarcerated people with similar reactions:

He was understanding and said: It will be OK. After that day at the match, coincidently, he ended up being my primary contact officer. And to socialize me back to society he fixed it so that every weekend he was working we could go to a shopping mall, to try. Little by little, by little. (…) It helped. It did. Yes. Nicky

Although Nicky had no plan to seek help for his anxiety symptoms, he appreciated the support he received from his primary contact officer.

Bobby, on the other hand, had some informal support from fellow incarcerated and had also talked with a priest. He said that he often ruminated when he had time alone in his cell and emphasized his need for sharing his thoughts with others and receiving advice. He explained why he preferred to get help from formal sources:

So, to have someone who is an outsider. Who’s not an inmate. Who has got a sensible outlook on life, that can guide you– I think that’s important. (…) Because when you talk to a fellow inmate, then… It can go in the opposite direction, right. Because many have been through major crises, they have lost friends, they have lost family, maybe they have lost their girlfriend and wife, their children won’t speak to them, right? Bobby

Most participants also held the prison priests in high regard and appreciated the availability of the service. However, talking with a priest was not seen as a replacement for a consultation with a psychologist:

It was peculiar, when I asked for someone to talk with, the priest was offered first. For me it is alright, I go to church. But I’m thinking, if someone is not a Christian. I’m like: a priest? Or if you’re not religious. A session with the priest is more like a consultation towards God and his will. He can be a good listener [the priest], but you might not get the help you need in a mental sense. So, a psychologist, a “talking person” in prison is necessary. That could check on you sometimes.

This study’s findings demonstrate that many of the factors deciding access to mental healthcare are firmly rooted at the organizational level of the correctional and healthcare systems. Prisons in the Scandinavian countries, including Norway, are presumptuously humane compared to harsher correctional settings in other parts of the world. One could assume that these favorable conditions would be more conducive to mental healthcare access. However, the systemic barriers we found largely overlapped with challenges reported in other countries [ 42 , 43 , 44 ]. In addition, we found that individual beliefs, attitudes and aspirations also influence willingness to seek mental healthcare. Interestingly, most of these intrapersonal factors are tightly interwoven with the participant’s appraisals of how the prison conditions influence their mental health. This study also addresses an important knowledge gap in the literature, namely how restrictions on access to mental health information could influence mental health help-seeking for people in prison. The identified core category, “Breaking down barriers”, reflects an overarching focus on solutions to improving mental healthcare access based on the experiences of the participants in this study.

Access to health information

Knowledge of available services and how to access them is a prerequisite for mental health help-seeking [ 80 ]. The participants in our study claimed that information about mental health services was unsatisfactory, and lack of such information has also been noted as a barrier to help-seeking in other prison-based studies [ 44 ]. Moreover, sufficient levels of mental health literacy are positively associated with increased intentions for help-seeking from both informal and formal sources [ 81 ]. The participants in our study reported severely restricted access to their preferred sources of health information and a dependency on others to obtain such information. Since information seeking may occur before individuals are ready to share their health concerns with others, having to rely on others for accessing information is a potential barrier for recognizing mental health problems [ 25 ]. Thus, it is likely that the limited access to mental health information negatively impacts incarcerated persons capacity to manage their own mental health needs. The potential consequences of restrictions on access to health information among people in prison need more research attention. However, findings from other populations suggest that closing the apparent health information gap could be an important intervention for improving help-seeking for mental health problems [ 82 , 83 ].

The social influences on accessing mental healthcare

The participants reported that prison culture reduced their willingness to seek support from fellow incarcerated and the use of professional help for mental health problems. The TBP element “subjective norms” posits that beliefs about the opinions of others may influence the willingness to seek help [ 29 ]. Attributing mental health problems to personal weakness may reflect a stereotyped attitude involved in stigmatizing mental disorders [ 84 ]. Stigma may lead to concerns about what others might think if one were to seek help, and may delay or hinder help-seeking efforts [ 80 , 85 ]. It also seemed to be an important constraint to mental healthcare access in our study. This corresponds with findings from other studies [ 45 , 46 , 47 ] and suggests that fear of appearing weak is also a significant barrier to help-seeking in a Scandinavian prison context. Based on our findings and recommendations, we advise that focus on health education and normalization of mental health problems are measures that could decrease stigma [ 86 ], and increase willingness to seek mental health support and treatment among people in prison.

Although the culture among those incarcerated was perceived to discourage seeking support for mental health problems, fellow incarcerated also played a key role in supporting those who experienced mental health problems. They were more available than other help sources and had lived experience with distress related to imprisonment. Since information about available services was insufficient, fellow incarcerated were also perceived as an important source of information. Thus, naturally occurring peer support seemed to normalize mental health problems, possibly reducing stigma and lowering the threshold for mental health help-seeking. From the literature, we know that peer-based health interventions is effective in correctional settings [ 87 ], and formalizing peer-based health information and support could be beneficial in interventions aiming to increase the use of mental health services.

Beliefs and motivations for help-seeking

The prison environment was embedded in the participants’ beliefs: attributing the onset and worsening of mental health problems to the prison conditions was common among the participants. According to the Theory of Planned Behavior (TPB), attitudes about the potential benefits of help-seeking and alignment with individual goals affect the readiness and willingness to seek professional help [ 29 ]. Our data supported this notion. Some participants abstained from seeking professional help as they did not see how it might benefit them in their goal of improving their living conditions. For others, a prominent motive for seeking professional help was to receive validation and help managing their challenging life situations and the everyday stressors of prison life. A few participants also framed mental health help-seeking as a mission to document the consequences of imprisonment. By sharing their experiences with professionals, they hoped healthcare personnel could help them advocate for better conditions in prison. Obtaining sufficient knowledge about essential aspects of prison life is essential for health professionals working in a prison setting [ 88 ]. Based on our findings we propose that the ability of healthcare staff to communicate their understanding of the influence of prison living conditions on mental health is crucial for gaining trust and building an alliance with their incarcerated patients.

Another important motivator for many participants seeking help was their aspirations to live a law-abiding life after being released. It has been increasingly recognized that the relationship between mental disorders and criminal activity is complex and that integrated treatment that addresses both criminogenic factors (i.e. antisocial attitudes and behavior, substance use, criminal network, family issues and low educational/vocational engagement) and mental health issues is a must to prevent recidivism [ 89 ]. This view corresponds with the beliefs and preferences for rehabilitation and healthcare of several participants in our study. They were worried about their reintegration into society, which motivated them to seek professional help. Substance use treatment, in particular, was seen as essential to attaining rehabilitative goals. However, some participants who had served multiple sentences were less positive towards help-seeking. They had more negative experiences and seemed less hopeful that mental healthcare could improve their situation. Their low expectations for potential gain combined with a perceived lack of personal control in the help-seeking process, appeared to stall help-seeking for these participants. We suggest that implementing health services with a concurrent focus on addressing both criminogenic needs and mental disorders could be especially important for fostering healthcare utilization for people with a history of reoffending.

Organizational barriers to accessing mental healthcare

The perceived challenges with the paper-based request system were considered a significant barrier to healthcare access. TPB postulates that behavioral control and self-efficacy are important in help-seeking [ 29 ]. In a system where autonomy is limited, one could assume that a self-referral system can be empowering for those seeking help. However, the participants seemed to experience the opposite as they were left passively waiting for an answer to their request. Some also expressed confidentiality concerns, as they believed that prison officers read the request notes. Thus, the process of accessing health services seemed to diminish, rather than enhance their notions of control and self-efficacy. Improving the reliability of responses to requests and ensuring confidentiality could increase the experience of control in the self-referral process and may also empower imprisoned persons to seek help.

A barrier rooted in the interactions between the individual and the helping services was found in various expressions of skepticism towards “the system” by many participants. Earlier studies have also reported distrust in the system as a barrier to help-seeking [ 41 , 44 ]. Our results elaborate on these findings as the participants spoke of how suicides and severe self-harm by fellow incarcerated people contributed to diminished faith in the system. Some had voiced concern over the health and welfare of peers and had experienced that they were not listened to by the prison officers. According to the participants, many of their fellow incarcerated people had more severe symptoms of mental health problems and did not seem to have access to the help they needed. This confirmed their beliefs that the system took little interest in their mental health, and for some of them this led to a growing feeling of hopelessness and resentment. In addition, the high prevalence of mental disorders in prison implies that incarcerated persons witness people in severe distress regularly and for prolonged periods. This issue is largely unexplored and unrecognized in prison research, and the impact of these experiences on mental well-being and recovery should be investigated further.

Participants who experienced mental distress and adjustment problems had difficulties in accessing mental health services. They needed someone to talk to about their situation that could give them advice on how to cope, however they did not fulfil the criteria for secondary mental health services. Minor mental health problems in Norwegian prisons are to be handled by the prison healthcare services. However, according to the participants their capacity is very limited. This finding corresponds to other studies [ 90 ] documenting that access to integrated mental health services was limited for those with milder mental health problems. In the community, the establishment of low threshold services for people with mental health problems has been an important commitment as early intervention can prevent the development of more serious conditions. This may be even more important for those imprisoned, since coping strategies such as physical activity and seeking social support are less accessible [ 91 ].

Prison officer’s influence on access to mental healthcare

Prison officers were perceived to have a key role as gatekeepers to healthcare. Officers can facilitate access to healthcare by encouraging help-seeking or directly contacting healthcare services based on observations and conversations with incarcerated individuals [ 39 , 41 , 92 ]. The participants in our study pointed out the need for prison officers to take their health concerns more seriously, and that the threshold for contacting healthcare services by their request was too high. In addition, being asked directly about their psychological state by staff members was seen to ease talks about mental health by the participants. Our results support the notion that prison officers that are responsive to the mental healthcare needs of incarcerated persons could build confidence that these needs would be attended to when required [ 92 ]. Thus, ensuring sufficient mental health knowledge and awareness among prison officers of their role in mental healthcare access is an essential task for correctional systems.

Previous studies have found that the correctional systems´ procedures for managing suicidal risk is a potential obstacle for help-seeking. The fear of being moved or placed in a safety cell without personal belongings was identified as a barrier to disclosing suicidal thoughts [ 39 , 93 ]. In Norway, the risk of self-harm and suicide is ideally handled by increasing social contact, activities, monitoring and healthcare. However, in the face of acute mental crisis and severe suicide risk, placing persons in solitary confinement is not an uncommon practice [ 94 ]. Challenges with having incarcerated persons admitted and treated in specialized health care institutions, understaffing, and a lack of central guidelines for handling suicide risk may contribute to the use of solitary confinement for incarcerated persons in acute mental distress in the Norwegian correctional system [ 94 ]. The Norwegian Parliamentary Ombudsman reports that fear of solitary confinement and being placed in a security cell is a barrier to seeking help for suicidal ideations and plans [ 95 ]. In our study, participants who had asked for help when they were in acute distress experienced that the officers assumed that they intended to harm themselves. They were faced with the potential of being transferred to a higher security level or being placed in solitary confinement. Thus, how prison officers respond to incarcerated persons’ reports of acute mental distress could be of critical importance for their willingness to seek help for mental health issues in the future. However, more research on the perceived and actual consequences of disclosing mental distress and suicidal ideations in prison is needed to inform interventions to promote help-seeking.

Enhancing access to mental healthcare in prison

The participants underscore some conditions that may lower the bar mental healthcare utilization. Earlier positive experiences with mental healthcare in the community was mentioned by participants as important for their willingness to seek such services in prison, which also corresponds with findings in earlier studies [ 42 , 96 ]. In addition, the participants saw mental health services that were outreaching and integrated as positive. A few participants also highlighted mental health screening at reception to discover mental disorders that may need intervention. Screening at intake, and outreaching and integrated services are also recommended in the prison research literature [ 88 ]. Our findings show that these recommended measures may also make intuitive sense to incarcerated persons - common for all of them are that they seem to reduce stigma related to utilizing mental healthcare.

Our results indicate that incarcerated persons with both milder and more severe mental disorders experience barriers to accessing mental healthcare. These results are in line with studies from other correctional settings reporting unmet needs due to challenges with access and delivery of mental healthcare [ 37 , 38 , 39 ]. The underutilization of mental health services by incarcerated persons suggests that the ‘degree of fit’ between their needs and the available mental healthcare requires improvement. The World Health Organization (WHO) advocates for correctional systems with health and well-being as an integrated part of their core business and culture [ 33 ]. Along these lines, we found that participants called for a correctional system with mental health higher on the agenda. Some also preferred to seek help for mental health problems from other sources than mental health professionals. This finding supports the recommendation of the WHO that it is important to build mental health competency in all staff members in contact with those imprisoned. As many of the barriers to mental healthcare utilization are rooted in the wider correctional setting, we also suggest that the correctional and healthcare systems, in collaboration, should review their practices to enhance perceived efficacy in accessing healthcare.

Limitations

The data in this study are based on interviews with fifteen participants from three prisons. The participants were self-selected and may have had more knowledge, interest, and willingness to talk about mental health issues than the average person in prison. We cannot claim that the results represent a complete account of access to mental healthcare and help-seeking among incarcerated persons in Norway. However, our findings were consistent with findings from other studies from Norway and correctional settings in some other countries. We have presented details about the participants, method, data, and context to allow others to consider the potential transferability of the results. We hope our findings encourage further research on access to mental healthcare for people in prison.

Mental healthcare that is outreaching and integrated is perceived to facilitate access and decrease stigma. The correctional system should address access to health information, the referral system, and their responses to incarcerated persons who disclose distress to facilitate access to healthcare. Our results also indicate that mental healthcare extends beyond the scope of health services, suggesting that sufficient mental health knowledge and agency is needed at all levels of the correctional system.

Data availability

The data produced in the course of this research is not openly accessible owing to considerations regarding privacy. However, they can be obtained from the corresponding author upon a reasonable request.

Abbreviations

Theory of planned behavior

Mental health literacy

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Acknowledgements

The authors thank the study participants and the correctional facilities for their cooperation.

Open access funding provided by UiT The Arctic University of Norway (incl University Hospital of North Norway). The study was supported by a grant from the North Norway Regional Health Authority (Helse Nord RHF). The funding body had no role in study design, data collection, analysis, or writing of the manuscript. The study was supported by the Publication Fund of UiT The Arctic University of Norway.

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All authors contributed to the conception and design of the study. LES conducted the interviews and their transcription. All authors analyzed the data. LES drafted the manuscript. All authors participated in revising the manuscript and approved the final version.

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The study was performed in accordance with the Declaration of Helsinki. All relevant guidelines and regulations were followed. All participants gave written informed consent. The study was approved by the Data Protection Officer of the University Hospital of North Norway. The Norwegian Correctional System, Region North, also approved the study. The study was submitted to and deemed outside the mandate of the Regional Health Research Ethics Committee of Northern Norway.

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Solbakken, L.E., Bergvik, S. & Wynn, R. Breaking down barriers to mental healthcare access in prison: a qualitative interview study with incarcerated males in Norway. BMC Psychiatry 24 , 292 (2024). https://doi.org/10.1186/s12888-024-05736-w

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Community mental health services need support to improve patient satisfaction, says NHS leader

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Low satisfaction with community mental health services is symptomatic of them being “stretched to the limit” in the face of soaring demand, the chief executive of NHS Providers has said.

Latest results from the Care Quality Commission’s 2023 community mental health survey 1 show that people using community mental health services in England have reported poor experiences in the care they receive, particularly in child and adolescent services.

Commenting on the results, Julian Hartley, chief executive of NHS Providers, which represents trusts, said, “Community mental health services, stretched to the limit in the face of soaring demand, must be a national priority, not ‘poor relations’ of the health system.

“It’s clear that services have more to do to ensure that people get timely, high quality care and support—but to aid trusts’ efforts we need broader, cross government action to tackle the gap between demand for mental healthcare and trusts’ ability to provide it.”

Hartley said recent government funding boosts were welcome but followed “years of serious underinvestment” and were not enough to keep pace with growing demand and people’s complex needs.

The Care Quality Commission’s survey got 14 770 responses (a 20% response rate) from people who had mental health treatment between 1 April and 31 May 2023. This included 11 163 users of adult mental health services, 873 users of child and adolescent mental health services (CAMHS), and 2734 users of older peoples’ mental health services. The survey methodology was changed this year to include 16 and 17 year olds for the first time.

Overall, key areas identified for improvement were:

Quality of Care: Only 39% (5485 of 14 200 respondents to this question) were “definitely” given the help they needed the last time they saw someone from mental health services. Only half (50%, 7033 of 13 998) were “definitely” given enough time to discuss their needs and treatment

Crisis care: More than one in 5 (22%, 2904 of 12 907 respondents to this question) would not know who to contact out-of-hours if they were in a mental health crisis, and over a quarter (26%, 1150 of 4384) did not get the help they needed when they did make contact

Support while waiting: While waiting between their assessment with the NHS mental health team and their first appointment for treatment, 42% (2005 of 4757 respondents to this question) did not get support for their mental health. Some 44% (2292 of 5211) reported that their mental health deteriorated while they waited for their first appointment

Planning and involvement in care: Over a third (37%, 4156 of 11 136) reported that they did not have a care plan, and 44% (4547 of 10 349) had not had their care reviewed in the past 12 months. Of those who responded to this question, 59% (6566 of 11 194) were not asked if they required support to access care

Satisfaction levels were particularly low among users of CAMHS. For example, 40% (366 of 910 respondents in this section) said they did not have a care plan, 47% (430 of 907) said they had not had a review meeting in the past 12 months, and 27% (314 of 1174) said they had not made decisions about their care and treatment with their mental health team.

Across all community mental health services, people reported good experiences with drug reviews, with 77% (8566 of 11 093) saying that their NHS mental health team asked how they were getting on with their medication in the past 12 months.

Another positive was privacy of care settings, with 74% (4427 of 5960 respondents to this question) saying they “definitely” had enough privacy to talk comfortably during the delivery of NHS talking therapies.

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Schizophrenia & Psychosis Guide: Care, Advocacy, Engagement

Language Matters: Shaping Mental Health Discussions with NAMI's Schizophrenia and Psychosis Lexicon Guide

About the guide.

The National Alliance on Mental Illness (NAMI) introduces the Schizophrenia and Psychosis Lexicon Guide’s first edition, taking the necessary step to initiate crucial conversations around schizophrenia and psychosis. This guide highlights the significant impact of precise and empathetic language in mental health, advocating for accuracy, hope, and dignity. Tailored for a broad audience including clinicians, journalists, and family members, it seeks to elevate communication standards and combat the stigma often associated with mental illness. By presenting carefully selected terms, the guide encourages understanding and respect, grounding its approach in the real voices of those with lived experience – and allows room to evolve with future research, perspectives, and trends in language.

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Embrace language's transformative power in mental health with NAMI's Schizophrenia and Psychosis Lexicon Guide. This essential resource provides context and guidance to support clarity, empathy, and respect in mental health discussions. Offering practical recommendations, it plays a pivotal role in enriching dialogues, reducing stigma and fostering strong connections with individuals experiencing schizophrenia and related conditions. Implement this guide in your practice, communications or everyday interactions, contributing to a more inclusive and supportive community. Start making a change— download the guide now  and be part of the movement towards a more understanding and compassionate world.

Key Findings from The Guide

Explore the Key Findings of the NAMI Schizophrenia and Psychosis Lexicon Guide. Discover how language shapes treatment engagement, empowers individuals and supports caregivers and patient advocates in fostering understanding and reducing stigma in schizophrenia and psychosis care.

Contextual Language Use: Treatment professionals adapt their language based on the context, enhancing communication with peers and patients alike.

Empowerment Through Formal Terminology: For some patients, formal diagnostic language can offer patients authority and hope, indicating a pathway for treatment.

Challenges with Diagnostic Labels: Diagnostic terms can sometimes cause individuals to feel mislabeled or misunderstood, potentially hindering therapeutic relationships.

Individual Language Preferences: People may prefer personalized language reflecting their experiences over clinical terms, underscoring the importance of diverse term acceptance.

Importance of Personalized Engagement: Adapting to an individual's language preferences enhances therapeutic relationships and supports recovery.

Broad Application: Beyond clinical settings, the guide helps law enforcement, media and families engage sensitively with individuals experiencing psychosis, advocating for accurate, non-stigmatizing language.

Quotes From the Guide

Psychosis is one of the hardest [conditions to de-stigmatize] because it’s been misrepresented in movies and entertainment…I wish that these people would stop…continually linking psychosis and violence over and over and over again. – Amy Cohen, Ph.D., SME Interview

[L]anguage is so culture dependent, person dependent that my first priority would be to make sure that we’re not… recommending some fixed process or fixed word but rather a way to communicate[.] – Lisa Dixon, M.D., MPH, SME Interview

It’s not just the words but how we think about things. And to me the ultimate goal of a lexicon is to improve communication. And the way you improve communication is by providing people with the tools to be open to listening and understanding what another person is communicating. – Alice Medalia, Ph.D., SME Interview

We talk about why it is important to take medications, stress strategies to remember to take medications, and give permission to miss doses without feeling like a failure. It’s important to set expectations and use language that gives room for mistakes. We all mess up taking medications, and you don’t have to feel like a failure if you forget or are not always adherent. – Deanna L. Kelly, PharmD, BCPP

Acknowledgements

This lexicon guide is the result of a collaborative and iterative process including a comprehensive literature review, interviews with subject matter experts, and focus groups of individuals and family members affected by schizophrenia and psychosis conditions. NAMI would like to thank The Hannon Group and our partners who made this project possible – demonstrating a collaborative commitment to enhancing mental health dialogue.

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NAMI HelpLine is available M-F, 10 a.m. – 10 p.m. ET. Call 800-950-6264 , text “helpline” to 62640 , or chat online. In a crisis, call or text 988 (24/7).

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Anxiety increased among children and adolescents during pandemic-related school closures in Europe: a systematic review and meta-analysis

• Helena Ludwig-Walz   ORCID: orcid.org/0000-0003-1558-8241 1 ,
• Indra Dannheim   ORCID: orcid.org/0000-0002-4478-7808 2 , 3 ,
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• Jörg M. Fegert   ORCID: orcid.org/0000-0001-6070-4323 6 &
• Martin Bujard   ORCID: orcid.org/0000-0002-3603-4160 1 , 7  

Child and Adolescent Psychiatry and Mental Health volume  17 , Article number:  74 ( 2023 ) Cite this article

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Considering the heterogenous evidence, a systematic review of the change in anxiety in European children and adolescents associated with the COVID-19 pandemic is lacking. We therefore assessed the change compared with pre-pandemic baselines stratified by gender and age as well as evaluated the impact of country-specific restriction policies.

A registration on the ‘International Prospective Register of Systematic Reviews’ (PROSPERO) occurred and an a priori protocol was published. We searched six databases (PubMed, Embase, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, WHO COVID-19) using a peer-reviewed search string with citation tracking and grey literature screening. Primary outcomes were: (1) general anxiety symptoms; and (2) clinically relevant anxiety rates. We used the Oxford COVID-19 Stringency Index as an indicator of pandemic-related restrictions. Screening of title/abstract and full text as well as assessing risk of bias (using the ‘Risk of Bias in Non-randomized Studies of Exposure’ [ROBINS-E]) and certainty of evidence (using the ‘Grading of Recommendations Assessment, Development and Evaluation’ [GRADE]) was done in duplicate. We pooled data using a random effects model. Reporting is in accordance with the Preferred Reporting Items for Systematic review and Meta-Analysis (PRISMA) statement.

Of 7,422 non-duplicate records, 18 studies with data from 752,532 pre-pandemic and 763,582 pandemic participants met full inclusion criteria. For general anxiety symptoms the total change effect estimate yielded a standardised mean difference (SMD) of 0.34 (95% confidence interval [CI], 0.17–0.51) and for clinically relevant anxiety rates we observed an odds ratio of 1.08 (95%-CI, 0.98–1.19). Increase in general anxiety symptoms was highest in the 11–15 years age group. Effect estimates were higher when pandemic-related restrictions were more stringent (Oxford Stringency Index > 60: SMD, 0.52 [95%-CI, 0.30–0.73]) and when school closures (School Closure Index ≥ 2: SMD, 0.44 [95%-CI, 0.23–0.65]) occurred.

General anxiety symptoms among children and adolescents in Europe increased in a pre/during comparison of the COVID-19 pandemic; particularly for males aged 11–15 years. In periods of stringent pandemic-related restrictions and/or school closures a considerable increase in general anxiety symptoms could be documented.

PROSPERO registration: CRD42022303714.

Mental disorders are important causes of disease burden among children and adolescents [ 1 , 2 ]. Even before the COVID-19 pandemic, the burden of disease study highlighted that anxiety disorders were the most prevalent condition in 2019 among young people in Europe. Among mental health conditions, such disorders represented a leading cause of years lived with disability [ 2 , 3 ]. In this regard, a link can be drawn between the non-treatment or undertreatment of anxiety disorders in childhood and adolescence and mental illnesses in adulthood, such as anxiety, depression and substance use disorders [ 4 , 5 ]. Anxiety is generally defined as feelings of concern that appear to have no obvious cause, but are sufficiently persistent and severe to affect daily life [ 6 ]. With the onset of the COVID-19 pandemic, the implementation of a broad range of public health and social measures (PHSM) [ 7 ] served to exacerbate many determinants of poor mental health. In particular, the environment of children and adolescents has been changed considerably by PHSM, which comprise school and leisure facilities closing, fewer peer interactions, changes in the family system as a result of the requirement to work from home, and quarantine orders [ 7 , 8 , 9 ]. As already known from previous studies [ 10 , 11 , 12 , 13 ], such changes can lead to serious impairments in young people’s mental health. To date, the impact of the COVID-19 pandemic on anxiety has been assessed primarily for the adult population [ 14 , 15 , 16 ] or its global prevalence for children and adolescents [ 17 , 18 , 19 ]. Existing European studies with a pre-pandemic baseline showed heterogeneous results [ 20 , 21 , 22 , 23 ]. However, a deeper understanding of changes in anxiety symptoms in the young population group is lacking, especially for the European continent.

An up-to-date examination of changes in anxiety symptoms among children and adolescents is therefore imperative and of great public health (PH) relevance in order to counteract suboptimal developments [ 2 ]. An analysis of the changes in the European continent means that the lack of an evidence base in the subgroup-stratified summary among children and adolescents can be rectified. It also allows for the use of a quasi-experimental design by analysing the impact of heterogeneous pandemic-related interventions in the European countries. Hence, the aim of this systematic review and meta-analysis is to identify, critically assess, summarise, and determine the certainty of evidence (CoE) regarding the impact of the COVID-19 pandemic on anxiety among children and adolescents in Europe compared with the pre-pandemic baseline. Thereby, it aims to provide information about the relevance of pandemic-related restrictions which will contribute to the analysis and the lessons learned from the immediate restrictions taken to safeguard the population in various European countries.

This systematic review and meta-analysis is reported according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) [ 24 ] statement (Additional file 1 : Table S1). Our protocol is registered on the ‘International Prospective Register of Systematic Reviews’ (PROSPERO; CRD42022303714) [ 25 ] and was published a priori [ 26 ]; any deviations from the original review protocol are presented in Additional file 1 : Table S2.

Data sources, search strategy and eligibility criteria

We searched for published articles in six electronic databases (PubMed, Embase, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, WHO COVID-19 database [including pre-prints]), up to 18 March, 2022. Additionally, we enlarged our searches by examining previous systematic reviews and meta-analysis on the same topic, checking reference lists in included studies and searching relevant grey literature sources such as reports issued by key organisations and abstracts of relevant conferences up to 16 April, 2022; more information on the screened key organisations and conferences is provided in Additional file 1 : Table S3.

We developed the search strategy according to the Population–Exposure–Comparison–Outcome (PECO) [ 27 ] scheme and included the following key search terms: children and adolescents (population), COVID-19 (exposure) and anxiety (outcome). The availability of a pre-pandemic baseline (comparison) was assessed manually. The six tailored search strategies can be found in Additional file 1 : Table S4. The search strategy was reviewed by a search specialist using the evidence-based checklist ‘Peer Review of Electronic Search Strategies’ (PRESS) [ 28 ].

Our pre-defined eligibility criteria were equally defined according to the PECO [ 27 ] scheme:

Population: Children and adolescents ≤ 19 years, living in the WHO European region [ 29 ].

Exposure: Participation in survey during the COVID-19 pandemic.

Comparison: Pre-pandemic baseline.

Primary outcomes: Measurements of general anxiety symptoms or clinically relevant anxiety rates; no secondary outcomes were considered.

We excluded studies undertaken in children and adolescents with pre-existing psychiatric diagnoses. No limits regarding language and effect measurement were applied, however our search strategy was designed and run in English. Publications drawing upon the same study population and measurement time points were included as one item. When measurement time points varied during the COVID-19 pandemic, each measurement time point was considered individually.

Selection process and data extraction

After deduplication, two reviewers (HLW, ID) used the recommended EPPI reviewer software [ 30 ] to independently screen first titles and abstracts, and second full texts, in accordance with the above eligibility criteria. Disagreements or uncertainty about eligibility were resolved through discussion. Reasons for exclusion after full text screening were recorded and are reported in a separate table (Additional file 1 : Table S5).

Further, two reviewers (HLW, ID) used piloted extraction forms to independently extract data from one third of the published studies and unpublished data requested from study authors. Remaining data extraction was completed by one reviewer (HLW) and verified by the other (ID). Differences in data extraction were discussed and resolved between the two reviewers. Our data extraction forms, in accordance with a former systematic review [ 31 ], included the following items: study information (first author, year of publication, country, study type), population and setting (sample size, % female, age of CA), COVID-19 determinants (time point of data measurement), pre-pandemic baseline (time point of data measurement, link between pre-pandemic population and the population during the pandemic) and outcomes (type of outcome, diagnostic instrument, psychometric properties of the diagnostic instrument, symptom reporter). We defined general anxiety symptoms and clinically relevant anxiety rates as primary outcomes. General self-reported measurements of anxiety were summarised as general anxiety symptoms. Since the measurement instruments and scales used varied considerably, the measurement data was standardised to standardised mean difference (SMD) with a 95% confidence interval (CI); this standardisation is also recommended by the Cochrane Handbook [ 32 ]. Measurements with a clinical cut-off or with a clinical diagnostic (International Statistical Classification of Diseases and Related Health Problems [ICD]) were summarised as clinically relevant anxiety rates and reported as odds ratio (OR) with a 95% CI. To describe PHSM restrictions in the measurement time frame of the studies and make them comparable, we used the Oxford COVID-19 Stringency Index [ 8 ] and the School Closure Index [ 8 ] as indicators. The Oxford COVID-19 Stringency Index consists of nine metrics including school closures, workplace closures and stay-at-home requirements. The index ranges from 0 (no restrictions) to 100 (most stringent restrictions) and was validated [ 8 ]. In accordance with the COVIDSurg Collaborative [ 33 ], we defined three categories: light restrictions (index < 20), moderate lockdowns (index 20–60) and full lockdowns (index > 60). The School Closure Index represents the handling of school closures and is an incorporated measurement in the Oxford COVID-19 Stringency Index, which was considered separately in our analyses. The index ranges from 0 to 3: 0 describes no restrictions; 1 contains recommended closure or all schools open with alterations resulting in significant differences compared with non-COVID-19 operations; 2 involves closure (only some levels or categories, e.g. just high school, or just public schools); and 3 requires closures at all levels [ 8 ]. We defined the cut-offs as ‘no or few alterations compared with a pre-COVID-19 situation’ (index < 2) and ‘partial or full school closure’ (index ≥ 2) [ 31 ]. We contacted nearly all study authors and asked to provide further unpublished data on age or gender-stratified data.

Risk of Bias assessment

Three reviewers (HLW, LMP, ID) independently assessed the risk of bias (RoB) in teams of two using the ‘Risk of Bias in Non-randomized Studies of Exposure’ (ROBINS-E) instrument [ 34 ]. For each study, the seven bias domains and a whole RoB assessment was revealed as either low, some concerns, high RoB, or very high RoB [ 34 ].

Data synthesis and statistical analyses

For the meta-analysis, we pooled effect estimates for general anxiety symptoms and clinically relevant anxiety rates in total and analysed different subgroups: gender (female/male), age (11–15, 16–19 years), Oxford Stringency Index (> 60/ ≤ 60) [ 8 ] and School Closure Index (≥ 2/ < 2) [ 8 ]. We used, where possible, results from adjusted analysis for pooling. If necessary, dichotomous data were transferred to SMD, using the formula recommended by Chinn [ 35 ]. Where multiple pre-pandemic measurements were available, the last measurement was used for calculation purposes. We excluded measurements, with combined anxiety/depression scores, from the meta-analysis. Where parent and self-reported data were presented [ 36 ], we gave preference to the self-reported data. Furthermore, within the meta-analysis, we grouped the studies according to their RoB rating; low/some concerns (= low) RoB studies and high RoB/very high RoB (= high) RoB studies were summarised both separately and in total. In particular, the pooled effect of the low RoB studies was taken for further interpretation. We used Review Manager 5.4.1 [ 37 ] and R Studio 4.2.1 [ 38 ] for data entry, statistical analysis, and graph creation. In all meta-analyses, random-effect models and the inverse-variance method with the ‘DerSimonian and Laird’ approach were used.

We investigated heterogeneity by using visual inspection of the forest plots as well as the Chi 2 test and I 2 index [ 39 ]. If I 2  > 50%, substantial heterogeneity was presumed. We conducted sensitivity analyses and meta-regression (if ≥ 10 studies per examined variable) to explain substantial heterogeneity [ 40 ]. Publication bias was analysed by visually interpreting funnel plots for signs of asymmetry [ 41 ] and statistically by calculating the Egger’s test (if ≥ 10 studies) [ 42 ].

Certainty of evidence

We assessed the overall CoE for each outcome using the ‘Grading of Recommendations Assessment, Development and Evaluation’ (GRADE) system and presented it along with the main findings of the review in a ‘Summary of findings’ table, based on a transparent format with defined applied criteria (Additional file 1 : Table S6) and a generated evidence profile (Additional file 1 : Table S7) [ 43 ]. The GRADE tool covers five categories for downgrading (RoB, imprecision, inconsistency, indirectness, publication bias) and three categories for upgrading (magnitude of effects, dose–response relationships, impact of residual confounding). The CoE could be rated as high, moderate, low or very low.

Our electronic search identified 7,420 non-duplicate records from database searches and additional two grey literature publications. Of these, 51 studies entered full-text screening. After a comprehensive screening process, detailed in the PRISMA flow diagram (Additional file 1 : Figure S1), we included 18 studies with 22 effect measures, comprising 16 peer-reviewed studies [ 20 , 22 , 23 , 36 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 ], one report [ 56 ], and one pre-print [ 21 ]. Reasons for exclusion after full-text screening are described in Additional file 1 : Table S5.

Study characteristics

The characteristics of each of the studies that were included are described in Table 1 . The total population sample included data from 752,532 pre-pandemic and 763,582 pandemic participants (broken down into general anxiety symptoms: 11,425 pre-pandemic and 13,387 pandemic participants; clinically relevant anxiety rates: 741,107 pre-pandemic and 750,195 pandemic participants). Studies were carried out in a range of countries: four in Germany [ 21 , 44 , 45 , 56 ], four in the United Kingdom [ 22 , 23 , 36 , 55 ], three in Italy [ 47 , 48 , 49 ], two in Spain [ 51 , 52 ], two in Switzerland [ 53 , 54 ], and one in Israel [ 46 ], one in the Netherlands [ 20 ], and one in Norway [ 50 ], respectively. Most of the studies measured general anxiety symptoms in spring/summer 2020 (14 effect measures) [ 20 , 21 , 22 , 23 , 36 , 45 , 46 , 47 , 49 , 50 , 51 , 53 , 54 , 55 ], while two effect measurements were conducted in autumn 2020 [ 21 , 22 ] and three in winter 2020/spring 2021 [ 21 , 51 , 52 ]. Clinically relevant anxiety rates were analysed in four studies [ 44 , 45 , 48 , 56 ]. Of the included studies, 17 [ 20 , 21 , 22 , 23 , 36 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 52 , 53 , 54 , 55 , 56 ] reported data for children and adolescents over the age of 11 and 11 studies [ 20 , 36 , 44 , 45 , 47 , 48 , 49 , 51 , 54 , 55 , 56 ] for children and adolescents under the age of 11. The measurement time point was rated as ‘full lockdown’ (Oxford Stringency Index > 60) in 14 studies [ 20 , 22 , 23 , 36 , 44 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 ] and partial or full school closure occured in 11 studies (School Closure Index ≥ 2) [ 20 , 21 , 22 , 23 , 36 , 46 , 47 , 48 , 49 , 51 , 55 ]. In addition, 12 studies [ 20 , 21 , 22 , 23 , 36 , 44 , 45 , 47 , 49 , 53 , 55 , 56 ] provided further study data (generally unpublished gender-stratified and age-stratified data). The effect estimates of the 18 studies that were included are summarised in Additional file 1 : Table S8. The RoB assessment revealed a ‘some concerns’ rating for six studies [ 20 , 21 , 44 , 46 , 53 , 56 ], a ‘high RoB’ rating for eight studies [ 22 , 23 , 36 , 45 , 47 , 50 , 51 , 55 ] and a ‘very high RoB’ rating for four studies [ 48 , 49 , 52 , 54 ]. Detailed rating information is provided in Additional file 1 : Figure S2 (traffic-light plot) and Additional file 1 : Figure S3 (weighted-bar plot).

Meta-analysis of general anxiety symptoms

For general anxiety symptoms, 12 studies [ 20 , 21 , 22 , 23 , 36 , 45 , 46 , 48 , 49 , 52 , 53 , 55 ] were pooled and CoE was graded as ‘very low’ (Table 2 ; further information in Additional file 1 : Table S7). In a pooling of four low RoB studies with six measures, a total change of a SMD of 0.34 (95% CI, 0.17 to 0.51, I 2  = 96%; Fig.  1 ) was calculated. Following gender stratification, a SMD of 0.30 (95% CI, 0.12 to 0.49, I 2  = 90%; Additional file 1 : Figure S4) for females and 0.34 (95% CI, 0.07 to 0.60, I 2  = 95%; Additional file 1 : Figure S5) for males in low RoB studies was revealed. Age-stratified pooling was possible for the 11–15 years age category with three studies [ 20 , 21 , 53 ] and five effect measures, and for the 16–19 years age category with two studies [ 20 , 21 ] and four effect measures. For the 11–15 years age category, the total change effect estimate yielded a SMD of 0.39 (95% CI, 0.18 to 0.60, I 2  = 93%; Additional file 1 : Figure S6). Change effect estimates were also evident for females (SMD, 0.34; 95% CI, 0.19 to 0.49; I 2  = 71%; Additional file 1 : Figure S7) and males (SMD, 0.45; 95% CI, 0.15 to 0.74; I 2  = 93%; Additional file 1 : Figure S8). Pooling within the 16–19 years age category revealed a SMD of 0.24 (95% CI, -0.01 to 0.49, I 2  = 92%; Additional file 1 : Figure S9) in total, a SMD of 0.18 (95% CI, -0.01 to 0.37; I 2  = 75%; Additional file 1 : Figure S10) for females and a SMD of 0.31 (95% CI, -0.02 to 0.63; I 2  = 92%; Additional file 1 : Figure S11) for males.

Forest plot of changes in youth general anxiety symptoms comparing before and during COVID-19 pandemic. SE, standard error; SMD, standardized mean differences; RoB, risk of bias; 95%-CI, 95%-confidence interval

To estimate the extent to which the stringency of PHSM has an impact on anxiety symptoms, low RoB studies were pooled by the Oxford COVID-19 Stringency Index (> 60 vs ≤ 60) and the School Closure Index (≥ 2 and < 2). An increase in general anxiety symptoms was observed for the Oxford COVID-19 Stringency Index > 60 (SMD, 0.52; 95% CI, 0.30 to 0.73; I 2  = 96%; Fig.  2 ) and the School Closure Index ≥ 2 (SMD, 0.44; 95% CI, 0.23 to 0.65; I 2  = 96%; Fig.  3 ).

Forest plot of changes in youth general anxiety symptoms comparing Oxford Stringency Index. SE, standard error; SMD, standardized mean differences; SI, stringency index; 95%-CI, 95%-confidence interval

Forest plot of changes in youth general anxiety symptoms comparing School Closure Index. SE, standard error; SMD, standardized mean differences; SL, School Closure Index; 95%-CI, 95%-confidence interval

Meta-analysis of clinically relevant anxiety rates

For clinically relevant anxiety rates, four studies [ 44 , 45 , 48 , 56 ] were pooled and CoE was graded as ‘very low’ (Table 2 ; further information in Additional file 1 : Table S7). Total change yielded an OR of 1.08 (95% CI, 0.98 to 1.19, I 2  = 82%; Fig.  4 ) in two low RoB studies [ 44 , 56 ]. Clinically relevant anxiety rates increased significantly in females in low RoB studies (OR, 1.10 [95% CI, 1.02 to 1.19], I 2  = 52%; Additional file 1 : Figure S12), but not for males (OR, 1.04 [95% CI, 0.92 to 1.17], I 2  = 76%; Additional file 1 : Figure S13).

Forest plot of changes in youth clinically relevant anxiety symptoms comparing before and during COVID-19 pandemic. OR, Odds Ratio; RoB, risk of bias; 95%-CI, 95%-confidence interval

Heterogeneity, publication bias and sensitivity analysis

As heterogeneity was substantial in all meta-analyses (I 2  > 50%), meta-regression analyses were conducted for the total population, female and male children and adolescents. In every meta-regression analysis, ‘RoB’ and ‘study design’ represent positive covariates (Additional file 1 : Tables S9-14). The covariate ‘RoB’ was addressed by the aforementioned stratification of low vs high RoB studies. Effect direction and significance did not change after removing the study with cross-sectional design. Sensitivity analyses (Additional file 1 : Table S15) revealed significant differences for study design and effect conversion. However, only one cross-sectional study and one study with converted measurements were included in the analyses. Effect direction and significance did not alter after removing these studies from meta-analyses. Visual analysis of the (contour-enhanced) funnel plots implied asymmetry (Additional file 1 : Figures S14–S19), but was discarded by applying Egger’s test (Additional file 1 : Table S16).

This systematic review and meta-analysis provides insights into the changes in general anxiety symptoms and clinically relevant anxiety rates in European children and adolescents after the onset of the COVID-19 pandemic when compared with the pre-pandemic baseline. We included 18 studies that assessed changes in over 750,000 children and adolescents (for several measurement points) across Europe. The pooled effect estimates of low RoB studies revealed an increase in general anxiety symptoms overall, and particularly for males in the 11–15 years age category. A significant increase in clinically relevant anxiety rates was also observed among female children and adolescents.

Considering the various different restriction policies in European countries, this systematic review and meta-analysis is the first that assessed the association between PHSM and higher general anxiety symptoms. For children above six years of age, school closures have been a major disruptor as these measures radically changed their life [ 9 ]. Instead of having social contact five days a week, often for six or eight hours a day with their class, peers and friends, they were homebound and unable to socialise properly. These full or partial school closures affected approximately 105 million pupils and students in Europe [ 57 ]. Our meta-analyses revealed particularly high general anxiety symptoms during periods of school closure (SMD, 0.44; 95% CI, 0.23 to 0.65) and other restriction measures (SMD, 0.52; 95% CI, 0.30 to 0.73); these effect increases outlined a potential impact of school closures and PHSM on anxiety symptoms. However, the evidence rating of "very low" have to be considered here; therefore, further reseach is needed. Both effect estimates were higher than in a previous meta-analysis on depression [ 31 ]. As social anxiety can be reduced through exposure to social interactions, the non-exposure to social contacts and social challenges in the school environment as a result of PHSM may explain the stronger correlation with the symptomatology. Further research will allow a comparison of the reduction in anxiety symptoms between subgroups and countries following the acute pandemic phase. Our results suggest that the higher association with restrictive measures could lead to a more rapid reduction in symptoms once life returns to normal. Nevertheless, social exclusion of children and adolescents during the pandemic could lead to life-long mental and physical health consequences [ 3 , 58 , 59 ]. However, a clearcut separation of the effects on anxiety due to school closure from those due to other pandemic related restrictions—like worries about (elderly) relatives, fear of long-lasting health effects (long COVID), and also closure of recreational and sports facilities—was not possible. This limitation was already found in a previous review [ 19 ]. Therefore, our results must be interpreted indicative regarding the possible drivers for the increased anxiety.

Regarding different subgroups, our analyses first showed strong differences between studies with low and high RoB. While the increase in general anxiety symptoms is clearly evident for studies with a low RoB, the pooling effects of high RoB studies were indistinct and non-significant. The heterogeneous evidence in literature can partly be attributed to the different quality of existing studies; this underlines the importance of strictly assessing the RoB. Second, age-specific analyses found considerably higher effect estimates for children and adolescents aged 11–15 years, in particular among males, but lower and more imprecise estimates for those aged 16–19 years. Taking into account the fact that the risk of anxiety disorders among children aged 10–14 years had already been reported as being high three decades before the COVID-19 pandemic [ 2 ], our findings showed that this age group was also more vulnerable to increases during the COVID-19 pandemic. The imprecise results for general anxiety symptoms among males in the 16–19 year age category are in contrast to findings on depression [ 31 ]. This underlines the necessity to differentiate between different mental health diagnoses in specific age groups in the COVID-19 pandemic. Third, for clinically relevant anxiety rates, the pooled associations were based on two low RoB studies from Germany and should be interpreted with caution; further empirical evidence is needed here.

This paper has strong implications for both policy and clinical practice. Policy-makers should consider the unintended consequences before imposing PHSM such as school closures on the mental health of children and adolescents. Psychiatrists, psychotherapists and other public health experts for children and adolescents should therefore be included in pandemic crisis task forces [ 60 , 61 ]. The increase in general anxiety symptoms and the variation between specific groups and countries requires children and adolescents to be closely monitored over the next few years. This monitoring should cover a broad range of age groups, similar to the recommendation of the U.S. Preventive Services Task Force to screen all children and adolescents aged 8–18, regardless of whether they have symptoms [ 62 ]. Based on our study, children and adolescents born in 2005 to 2010 (aged 11–15 years in 2020 to 2021) should be monitored henceforth. While our study indicates a strong need for anxiety disorder therapies (like previous research for depression symptoms [ 31 ]), these professionals were understaffed even before the pandemic [ 6 ]. Policy makers should therefore strengthen availability and capacity of these professional groups.

Screening and adequate diagnoses are important for identifying children and adolescents with anxiety disorders and the need for therapy. The gap between studies measuring general anxiety symptoms and those measuring clinically relevant anxiety rates in our systematic review might indicate a lack of clinical evidence and diagnoses. Parents, teachers, health care professionals and sports trainers should be made aware of risk factors and symptoms of anxiety disorders as well as mental health services. The negative consequences in later life of a failure to address anxiety symptoms on children and adolescents are well documented [ 3 , 58 , 59 ]. Moreover, even before the COVID-19 pandemic, anxiety and depression disorders were two of the top five causes of overall disease burden for children and adolescents in Europe, and suicide was a leading cause of death among 10–19-year-olds in the WHO European region [ 3 ]. It is therefore important to implement evidence-based interventions that can help address mental health issues in children. Targeted interventions and longer programmes in particular seemed to be more effective [ 3 ]. In addition, protective factors should be communicated and supported; including parent–child dialogue [ 63 ], a predictable home environment [ 64 ], peer-to-peer social contact [ 65 ] and physical activity [ 66 ]. Further, increased resilience among child and adolescents could be a predictor of fewer anxiety symptoms [ 67 , 68 ].

There are several research gaps regarding anxiety symptoms in the COVID-19 pandemic in Europe, including evidence for children aged below 10 years, differentiation by social status or education, and clinically relevant anxiety rates. Generally, there are only a very small number of studies on anxiety with a pre-pandemic baseline in Europe, although no such studies were able to be included for Eastern European countries and hardly any evidence from southern Europe. To improve this, representative longitudinal cohort or panel studies on CA should be conducted in all European countries so as to have a pre-crisis baseline and to monitor changes over time. Such a cohort or panel should include validated anxiety measures for general symptoms and for a clinically relevant cut-off, as well as demographic, socioeconomic and health-related confounders. These criteria are necessary in order to reduce the RoB and to allow subgroup-specific analyses.

Strength and limitations

There are several limitations to this review. First, RoB was high for 12 studies (66% of the studies included), mainly based on bias due to participant selection, missing data and insufficient adjustment of important confounders. This limitation was addressed by downgrading for RoB in GRADE and we stratified our meta-analyses by RoB. Second, the instruments that were used differed greatly in their scales. To unify them, we transformed the effect estimates to SMD or OR. Third, there was a high level of heterogeneity in the meta-analyses (I 2  > 50%), which we tried to explain by conducting meta-regression analyses. Fourth, no country pooling and visualisation over time were possible due to the low study quality. There were only a small number of available studies within our strict inclusion criteria with age-group-specific data. Fifth, there is a lack of longitudinal studies. Sixth, more subgroup analyses were not feasible. Seventh, the Oxford Stringency Index [ 8 ] and the School Closure Index [ 8 ] were used as proxies for PHSM and cannot cover all facets of the COVID-19 pandemic.

The strengths of this review are that it largely follows the methodological guidelines recommended by the Cochrane Handbook for systematic reviews [ 32 ], such as systematic search in several databases with a peer-reviewed search strategy and consideration of pre-prints, grey literature, and conference abstracts. In addition, literature screening, data extraction and RoB rating were performed independently and unpublished data was requested from study authors. In addition, the assessment of the RoB and the CoE was conducted using recommended tools. Thus, an assessment of evidence based on high quality studies was possible, allowing contradictory findings from previous studies to be properly interpreted.

This systematic review and meta-analysis showed an increase in general anxiety symptoms among European children and adolescents during the first two years of the COVID-19 pandemics compared with a pre-pandemic baseline. The 11–15 years male age group was particularly affected. Social distancing policies implemented in European countries, and in particular school closures, might be associated with a considerable increase in the effect of general anxiety symptoms. Therefore, school closures should be implemented only with the greatest caution and with consideration of the evidence available regarding the mental health of children and adolescents. At present, the need is huge to monitor anxiety symptoms in children and adolescents on a long-term basis and to identify which of the 105 million children and adolescents in Europe have disorders that require professional management and treatment. Due to long-term consequences of anxiety disorders and the risk of suicidality, those affected have to be clinically addressed through early identification and therapy.

Availability of data and materials

All data are included in the manuscript and appendix.

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We would like to acknowledge Dr Sabrina Schlesinger (Head of Research Group Systematic Reviews; German Diabetes Center) for her peer-review of the search strategy according to the Peer Review of Electronic Search Strategies (PRESS) Evidence-Based Checklist.

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HLW and MB formulated the research question, with clinical feedback from JMF. All authors contributed to the study concept and design. HLW and ID screened titles, abstracts, full text and extracted data. HLW, LMP and ID assessed risk of bias. HLW and LMP conducted the GRADE assessment. HLW and MB prepared the first draft of the manuscript. HLW and ID accessed and verified all data. The corresponding author had final responsibility for deciding to submit for publication. All authors read and approved the final manuscript.

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Dr Lisa M. Pfadenhauer (last five years): Co-author of the Cochrane reviews ‘Measures implemented in the school setting to contain the COVID‐19 pandemic: a rapid scoping review’, ‘Measures implemented in the school setting to contain the COVID‐19 pandemic’ and ‘Unintended consequences of measures implemented in the school setting to contain the COVID‐19 pandemic: a scoping review’. Prof Dr Martin Bujard (last five years): Research funding from European Union and BMBF (German Ministry of Education and Research). Travel grants and honoraria from universities, federal and state parliaments, federal and state ministries, Evangelical-Lutheran Church, Federal Agency for Civic Education. Consultant for BMFSFJ (Federal Ministry of Family, Senior Citizens, Women and Youth). Every grant and every honorarium were declared to the law office of the Federal Institute for Population Research (BiB). Prof Dr Jörg M. Fegert (last five years): Research funding from European Union, BMG (Federal Ministry of Health), BMBF (Federal Ministry of Education and Research), BMFSFJ (Federal Ministry of Family, Senior Citizens, Women and Youth), DFG (German Research Foundation), G-BA Innovation Fund, State Ministries of Baden-Württemberg and Saarland, State Foundation Baden-Württemberg, Porticus Foundation, Evangelical-Lutheran Church in Württemberg. Travel grants, honoraria, sponsorship for conferences and medical educational purposes from APK, Adenauer- and Ebertstiftung, Deutschlandfunk, DFG, DJI, DKSB, Infectopharm, med update, UNICEF, professional associations, universities and federal and state ministries. Consultant for APK, federal and state ministries. No industry-sponsored lecture series, no shareholdings, no participation in pharmaceutical companies. Every grant and every honorarium were declared to the law office of the University Hospital Ulm. No other disclosures were reported.

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Ludwig-Walz, H., Dannheim, I., Pfadenhauer, L.M. et al. Anxiety increased among children and adolescents during pandemic-related school closures in Europe: a systematic review and meta-analysis. Child Adolesc Psychiatry Ment Health 17 , 74 (2023). https://doi.org/10.1186/s13034-023-00612-z

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A scoping review of academic and grey literature on migrant health research conducted in Scotland

• G. Petrie 1 ,
• K. Angus 2 &
• R. O’Donnell 2  

BMC Public Health volume  24 , Article number:  1156 ( 2024 ) Cite this article

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Migration to Scotland has increased since 2002 with an increase in European residents and participation in the Asylum dispersal scheme. Scotland has become more ethnically diverse, and 10% of the current population were born abroad. Migration and ethnicity are determinants of health, and information on the health status of migrants to Scotland and their access to and barriers to care facilitates the planning and delivery of equitable health services. This study aimed to scope existing peer-reviewed research and grey literature to identify gaps in evidence regarding the health of migrants in Scotland.

A scoping review on the health of migrants in Scotland was carried out for dates January 2002 to March 2023, inclusive of peer-reviewed journals and grey literature. CINAHL/ Web of Science/SocIndex and Medline databases were systematically searched along with government and third-sector websites. The searches identified 2166 journal articles and 170 grey literature documents for screening. Included articles were categorised according to the World Health Organisation’s 2016 Strategy and Action Plan for Refugee and Migrant Health in the European region. This approach builds on a previously published literature review on Migrant Health in the Republic of Ireland.

Seventy-one peer reviewed journal articles and 29 grey literature documents were included in the review. 66% were carried out from 2013 onwards and the majority focused on asylum seekers or unspecified migrant groups. Most research identified was on the World Health Organisation’s strategic areas of right to health of refugees, social determinants of health and public health planning and strengthening health systems. There were fewer studies on the strategic areas of frameworks for collaborative action, preventing communicable disease, preventing non-communicable disease, health screening and assessment and improving health information and communication.

While research on migrant health in Scotland has increased in recent years significant gaps remain. Future priorities should include studies of undocumented migrants, migrant workers, and additional research is required on the issue of improving health information and communication.

Peer Review reports

The term migrant is defined by the International Organisation for Migration as “ a person who moves away from his or her place of usual residence, whether within a country or across an international border, temporarily or permanently, and for a variety of reasons. The term includes several well-defined legal categories of people, including migrant workers; persons whose particular types of movements are legally-defined, such as smuggled migrants; as well as those whose status are not specifically defined under international law, such as international students.” [ 1 ] Internationally there are an estimated 281 million migrants – 3.6% of the world population, including 26.4 million refugees and 4.1 million asylum seekers – the highest number ever recorded [ 2 ]. The UN Refugee Society defines the term refugee as “ someone who has been forced to flee his or her country because of persecution, war or violence…most likely, they cannot return home or are afraid to do so .” The term asylum-seeker is defined as “someone whose request for sanctuary has yet to be processed.” [ 3 ].

Net-migration to Europe was negative in the 19th century due to higher levels of emigration, however in the mid-20th century immigration began to rise, because of an increase in migrant workers and following conflicts in the Middle East and North Africa [ 4 ]. Current migration drivers include conflicts alongside world-wide economic instability, exacerbated by the Covid-19 pandemic [ 5 ]. Environmental damage due to climate change is expected to inflate the number of asylum seekers entering Europe in future [ 6 ]. The increase in migration to Europe is not a short-term influx but a long-term phenomenon, and European nations must adapt and find solutions to resulting financial, safeguarding and health challenges [ 7 ].

Data on healthcare use by migrants in Europe is variable, which means cross-country comparisons are inadequate [ 8 ]. Many countries do not record migration information within health records and all use disparate criteria to classify migrant status. The lack of comparative data hinders public health surveillance and effective interventions [ 9 ]. Even where information is available, results can be contradictory due to the multifarious migrant population. Migrants have a wide range of origin countries, socio-economic position, age and journeys undertaken which can affect health status [ 10 ].

Migrants initially may have better health than the general population, known as the ‘Healthy Migrant effect’ [ 11 ]. However, health declines with increasing length of residence [ 12 ] and over time to levels comparable with the general population [ 13 ]. Second generation immigrants may have higher mortality than average [ 14 ]. The process of acculturation to the host country, with adoption of unhealthy lifestyle and behaviours, increases the risk for chronic disease [ 15 ]. In addition, inequalities in health of migrants compared to host populations has been confirmed by wide-ranging research [ 16 ].

Host countries may limit healthcare access, with undocumented migrants sometimes only entitled to emergency care [ 17 ]. Even when access is granted, inequitable services can affect quality of care due to language barriers and cultural factors [ 18 ]. Poor working/living conditions and discrimination can exacerbate health inequalities [ 12 ]. Processing facilities for asylum seekers are frequently overpopulated, stressful environments [ 19 ] and threat of deportation, lack of citizenship rights and integration can negatively affect health and access to care [ 20 ]. Undocumented workers are unprotected by health and safety legislation leading to dangerous working conditions and injuries [ 15 ].

A systematic review of migrant health in the European Union (EU) found migrants have worse self-perceived health than the general population [ 21 ]. Research evidence indicates increased prevalence of cardiovascular disease, diabetes, mental health disorders and adverse pregnancy outcomes. Exposure to conflict, harsh travel conditions and suboptimal vaccine programmes can mean higher risk of communicable disease [ 22 ]. Scoping reviews have also been conducted to describe trends within migration health research in the United Kingdom (UK) [ 23 ] and identify gaps for future research agendas in the UK [ 23 ] and in the Republic of Ireland [ 24 ].

Almost three-quarters (73%) of published migration health research in the UK has been conducted in England, focusing primarily on infectious diseases and mental health. There is limited evidence on the social determinants of health, access to and use of healthcare and structural and behavioural factors behaviours that influence migrant health in the UK [ 23 ]. By contrast, a large amount of the migration research conducted in the Republic of Ireland has focused on the social determinants of health, and on health system adaptations, with a paucity of research focusing on improving health information systems [ 24 ].

Migration and Health in Scotland

Immigration to Scotland began to rise in 2003 with the expansion of the EU [ 25 ]. The population in Scotland increased from 5.11 million to 5.47 million between 2005 and 2020 and is predicted to continue rising until 2028 [ 26 ] despite low birth rates, with the increased population resulting from inward migration [ 27 ]. Scotland’s population is becoming more ethnically diverse [ 28 ] and susceptibility to different health conditions varies by ethnic group, which has implications for the planning and provision of health services [ 29 ]. 7% of the current Scottish population are non-UK nationals and 10% were born outside Britain. The commonest countries of origin were Poland, Ireland, Italy, Nigeria and India [ 30 ].

Within Scotland, linking health data to ethnicity is standard in order to monitor and improve health of minority groups [ 31 ]. Ethnic background can differ from country of birth which means migration status cannot be assumed [ 32 ], although health inequalities experienced by migrants often extend to affect all ethnic minority groups [ 33 ]. The Scottish Health and Ethnicity Linkage Study (SHELS) linked census data to health records of 91% of the population which has provided information on mortality and morbidity by ethnic group and country of birth [ 34 ]. SHELS research indicates that the white-Scottish population have a higher mortality rate than other ethnic groups. This may be consequent to the comparatively poor health of the Scottish population relative to other European nations: high mortality rates in the general population may cause a perception that the health of minorities is more advantageous than in reality [ 35 ].

Cezard et al’s [ 13 ] analysis of self-perceived health among people in Scotland found that being born abroad had a positive impact on health status. Health declined with increased length of residence, which may be explained by cultural convergence with the majority population. Allik et al. [ 36 ] compared health inequalities by ethnic background and found that with increasing age, health differences reduced thus people aged over 75 of all ethnicities had similar or worse health status than White-Scottish people. While working-age migrants appear to be healthier than the White Scottish population, it cannot be assumed that in future this would extend to older age groups.

Research has shown deprivation as a cause of heath inequalities among ethnic minority and migrant groups [ 37 ]. The socio-economic status of minority ethnic groups in Scotland is unusual, as most are of similar or higher status than the white-Scottish population [ 38 ]. Therefore, public health interventions targeting deprivation may not address risk-factors for ethnic minorities and migrants [ 36 ]. Further research on determinants of health in migrants can help with planning and design of inclusive policies.

The 2011 census indicated that 50% of immigrants lived in the cities of Edinburgh, Glasgow, and Aberdeen. Glasgow had a greater percentage of non-European immigrants due to participation in the Asylum dispersal programme [ 39 ]. 10% of UK asylum seekers are placed in Glasgow, but records are not kept following approval of asylum claims, therefore the size of the refugee population is unknown [ 40 ]. While immigration is controlled by the British government, in policy areas devolved to the Scottish government, refugees and asylum seekers have more rights than elsewhere in UK, including access to primary healthcare for undocumented migrants [ 40 ]. Despite the mitigating effect of Scottish policies, asylum seekers’ health is worsened by the asylum process and associated poverty, marginalisation, and discrimination [ 40 ]. Health deteriorates with increasing length of time in the asylum system [ 40 ] and asylum seekers and refugees have additional health needs and require enhanced support [ 41 ]. Research on the health needs of asylum seekers in Scotland is required to ensure adequate healthcare.

Aim and objectives

While scoping reviews on migrant health have been carried out in Europe [ 12 ], Ireland [ 24 ] and the UK [ 23 ] none are currently specific to the Scottish context. Given the devolved government of Scotland and demographics described above, a targeted review would help to clarify research priorities, with the aim of improving health and health care within the migrant community in Scotland. This work therefore builds on the published scoping review of migrant health in the Republic of Ireland [ 24 ]. The authors recommend replication of the study in other countries to facilitate cross-country comparison. Our aim was to scope peer-reviewed research and grey literature on migrant health conducted in Scotland and identify any gaps in the evidence. Our objectives were to: [1] understand the extent of the available research by topic area [2] summarise the types of research already conducted, populations studied, topics covered and approaches taken [3], map the existing research conducted in Scotland and [4] identify areas for future research based on any gaps in the evidence identified.

A scoping review was conducted as they can aid detection of evidence gaps [ 42 ] and allow incorporation of grey literature in topics with insufficient published research [ 43 ]. Arksey and O’Malley’s [ 44 ] five stage scoping review framework was used.

Stage 1: identifying the research question

Arskey and O’Malley [ 44 ] suggest maintaining a broad approach to identifying the research question, in order to generate breadth of coverage. On this basis, and in line with the research question identified in the Villarroel et al. [ 24 ] scoping review, our research question was framed as follows: What is the scope, main topics and gaps in evidence in the existing literature on health of international migrants living in Scotland? Arksey and O’Malley [ 44 ] highlight the importance of defining terminology at the outset of scoping reviews. For consistency, we used the broad definition of ‘migrant’ as per Villaroel et al. [ 24 ], from the International Organisation for Migration (IOM) [ 1 ]. References to refugees or asylum seekers followed the United Nations Refugee Agency definitions [ 3 ].

Stage 2: identifying relevant studies

Electronic database searches identified reports alongside a grey literature search, in line with Arskey and O’Malley’s [ 44 ] guidance to search for evidence via different sources. CINAHL, Web of Science, SocIndex and Medline academic databases were selected with input from co-authors. Search terms for the review were based upon those used by Villaroel et al. [ 24 ] with additional relevant terms from Hannigan et al. [ 9 ] The strategy combined three sets of terms for: Migrants (e.g., refugee, migrant, immigrant or newcomer), Scotland and Health. Both free text terms and index terms were used and adapted to the 4 academic databases and searches were run on 10th March 2023 (see Additional File 1 for database search strategies). Thirteen Government, University, and third-sector websites in Scotland were scoped for selection then hand-searched for grey literature (listed in Additional File 1 ).

Stage 3: study selection

Net-migration to Scotland increased in the 2000s [ 27 ] hence a date range of January 2002-March 2023 was used to identify evidence. The search was limited to English only. Inclusion/exclusion criteria for the studies were based on those used by Villaroel et al. [ 24 ] and expanded upon following discussion with co-authors (see Table  1 ). Reports were included if based on primary or secondary research on the health of international migrants in Scotland and used qualitative, quantitative or mixed methods research design. International or UK based reports were only included if Scottish results were documented separately. Reports on the health of ethnic minority groups in Scotland was included if place of birth was recorded. Research on internal (non-international) migrants within Scotland, either moving from one Scottish area to another or from another part of the United Kingdom to Scotland, were excluded.

Stage 4: data charting

All records were saved to RefWorks for screening. Records were first screened at title/abstract stage with 10% independently checked by the co-authors. The remaining reports were single screened using full text by the first author. Data from the included records was extracted and organised in tabular form under the following headings, which were agreed by team members: article type (peer-reviewed article or grey literature), publication date, geographical setting, study/intervention’s target population, funding, primary research focus on migrant health (y/n), study objective, data collection method, study design (qualitative/quantitative/mixed) and main finding. Reports were not critically appraised in this scoping review.

Stage 5: collating, summarising and reporting results

A report (either a peer-reviewed journal article or grey literature report) is used as our unit of analysis. In order to present the range of research identified, reports were grouped by the different headings in our data charting table and the outcomes considered for relevance to our scoping review’s aim. Our Results summarise the recency, focus, study designs and funding sources of the identified research, followed by the geographical settings and whether Scotland was included in international research reports. Reports were grouped by their study population and further sub-divided by publication type and geographical area for summarising. Finally, the WHO’s European strategy and action plan (SAAP) for refugee and migrant health [ 7 ] is a policy framework designed to help governments and other stakeholders monitor and improve migrant health in Europe. There are nine strategic areas in the WHO’s SAAP, which prioritise the most salient issues. In line with Villaroel et al’s [ 24 ] approach and in order to compare scoping review outcomes, these areas were used to categorise the findings of this review. Each report was matched to the most appropriate SAAP:

Establishing a Framework for Collaborative Action.

Advocating for the right to health of refugees.

Addressing the social determinants of health.

Achieving public health preparedness and ensuring an effective response.

Strengthening health systems and their resilience.

Preventing communicable disease.

Preventing and reducing the risks caused by non-communicable disease.

Ensuring ethical and effective health screening and assessment.

Improving health information and communication.

The primary focus (aims and objectives) of each report was used to identify the relevant SAAP area/areas. To improve reliability, results were compared using coding criteria used in Villaroel et al’s study (MacFarlane 2023, personal communication, 31st May). 10% of the reports were checked by one co-author to ensure consistent coding to SAAP categories. Any instances of uncertainty in mapping reports to the relevant SAAP area/areas were discussed and resolved by team members.

This scoping review of the literature on migrant health in Scotland identified 2166 records from academic literature databases, following duplicate removal, and 170 records from website searches (see Fig.  1 ). Following screening, a total of 71 peer-reviewed journal articles and 29 grey literature studies (totalling 100 reports) were included for analysis (Results table and reference list are presented in Additional File 2 ).

Flow chart illustrating the identification of sources of evidence included in the scoping review

Overall findings

The majority of reports were published between 2013 and 2022. Fifty-eight reports (58%) focused exclusively on migrant health [ 18 , 39 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 76 , 77 , 78 , 79 , 80 , 81 , 82 , 83 , 84 , 85 , 86 , 87 , 88 , 89 , 90 , 91 , 92 , 93 , 94 , 95 , 96 , 97 , 98 , 99 , 100 , 101 , 102 ]. 23 centred on health but included other populations in addition to migrants – for example research on ethnic minorities or other vulnerable groups [ 13 , 31 , 35 , 103 , 104 , 105 , 106 , 107 , 108 , 109 , 110 , 111 , 112 , 113 , 114 , 115 , 116 , 117 , 118 , 119 , 120 , 121 , 122 ]. Seventeen reports were included where the sample population were migrants, but the primary topic was not health – for example destitution, integration, and service needs [ 27 , 73 , 74 , 123 , 124 , 125 , 126 , 127 , 128 , 129 , 130 , 131 , 132 , 133 , 134 , 135 ]. Health data was reported as part of the wider subject matter. One report [ 136 ] looked at the social determinants of breastfeeding including migrant status and one [ 137 ] compared attitudes to aging and family support between countries.

Funding sources were not declared for 35 (35%) of reports. The Scottish Government funded 20 reports (20%) [ 13 , 27 , 32 , 39 , 45 , 46 , 47 , 66 , 77 , 88 , 99 , 100 , 101 , 102 , 113 , 116 , 119 , 121 , 129 , 134 ]. Other common sources of funding included Government funded public bodies ( n  = 13) [ 45 , 48 , 49 , 50 , 51 , 52 , 53 , 104 , 107 , 113 , 116 , 131 , 136 ], the Scottish Health Service ( n  = 18) (either the National Health Service (NHS) [ 13 , 54 , 56 , 57 , 58 , 59 , 102 , 113 , 116 ], local NHS trusts [ 45 , 60 , 61 , 77 , 102 , 103 , 112 ] or by Public Health Scotland [ 13 , 113 ]) Eleven reports (11%) were funded by Universities. The charity sector financed 15 (15%) reports [ 53 , 63 , 66 , 69 , 70 , 71 , 72 , 73 , 74 , 103 , 111 , 123 , 125 , 132 , 138 ] and the EU and Scottish local authorities funded four reports each [ 45 , 62 , 75 , 76 , 77 , 102 , 125 , 135 ]. Professional bodies financed one report [ 126 ] as did the Japanese government [ 64 ]. No reports received funding from the business sector. The biggest sources of funding for grey literature were Refugee charities (40%) and the Scottish government (30%) (see Fig. 2 ).

Sources of funding for migrant health research in Scotland

Research methods and data collection

52% of reports used qualitative research methods. Forty-five reports (86%) collected data using 1–1 interviews and 24 (46%) used focus groups. Other methods of data collection included questionnaires (six studies (11%)), workshops (two studies (3.85%)) and observation (two studies (3.85%)). Oral/written evidence, guided play sessions, family case studies and participatory activity sessions were used in one report each.

28% of reports used quantitative research methods, most commonly cross section design (ten studies (36%)) and cohort design (18 studies (64%)). Information was obtained from databases including medical records, Census data and national records in 21 reports (75%). Questionnaires were used in six reports (21%). Other methods including body measurements, food diaries, blood samples, interviews and case reviews were used in 1 report each.

20% of reports used mixed methods. The most common method of data collection was questionnaires in 14 reports (70%), interviews in ten reports (50%), focus groups in seven reports (35%), workshops in three reports (13.6%), and databases in three reports (13.6%). Other methods included literature review in two reports (10%), case note reviews in two reports (10%) and one reports each used mapping and school records.

Geographical areas of study

Ninety-one reports were situated in Scotland, of which 35 (38.5%) covered the whole country and 56 (61.5%) specified a city or area where research was undertaken. Some UK and international reports also specified the area of Scotland. The largest share of research within Scotland overall was in Glasgow with 36 reports, followed by Edinburgh with 16 reports, Lothian with six reports, Aberdeen with five reports and Grampian with three reports. The Northeast, Stirling, Highlands, Inverness, Lanarkshire, Motherwell and Selkirk had one report in each area.

There were seven international reports, three on mortality by country of birth [ 75 , 76 , 78 ], one on cross cultural communication [ 79 ], one on maternity care in Poland and Scotland [ 99 ], one comparing attitudes to aging in China and Scotland [ 137 ] and one on the link between birthweights and integration of migrants [ 64 ]. The remaining two reports were UK based, one on immunisation of Roma and traveller communities [ 117 ] and one on the link between ethnic diversity and mortality [ 104 ]. All the included international and UK reports documented the Scottish data separately within results.

Migrant population

Thirty-one reports included all migrants in the study population. The remaining reports included 30 studies on asylum seekers/refugees, 11 on Polish migrants, ten on Africans, six each on South Asians/Chinese/European, three on Arabs, and two on Roma populations (see Fig.  3 ). Most reports did not specify the country of origin for Asylum seekers and refugees - where country of birth was specified, reports were also included in the appropriate category.

Migrant populations studied in health research in Scotland

Grey literature and peer-reviewed reports differed in population focus. The most common populations of interest in grey literature were asylum seekers/refugees consisting of 18 reports (62%) [ 27 , 47 , 54 , 55 , 59 , 63 , 70 , 71 , 72 , 73 , 74 , 123 , 125 , 127 , 128 , 132 , 134 , 138 ] while for peer-reviewed journals 24 reports (34%) focused on all migrants [ 13 , 35 , 45 , 48 , 64 , 76 , 78 , 79 , 80 , 81 , 104 , 105 , 108 , 109 , 113 , 114 , 115 , 116 , 118 , 120 , 121 , 122 , 136 ].

Migrant study population also differed by local area; Glasgow city, where the majority of research occurred, had 18 reports of 36 (50%) on Asylum seekers/refugees [ 47 , 48 , 52 , 53 , 54 , 55 , 58 , 63 , 70 , 71 , 72 , 82 , 83 , 127 , 128 , 130 , 138 , 139 ] eight reports (22%) on Africans [ 52 , 53 , 84 , 85 , 86 , 87 , 106 , 107 ], seven reports (19%) on all migrants [ 45 , 48 , 80 , 102 , 104 , 105 , 121 ] and two reports (5.5%) on Roma migrants [ 103 , 117 ]. Other populations had one reports each. In Edinburgh five reports of 16 (31%) were on the Polish population [ 56 , 67 , 68 , 89 , 90 ], and two reports (12.5%) on Asylum seekers/refugees [ 60 , 133 ], Chinese [ 62 , 137 ], South Asian [ 46 , 119 ], all migrants [ 105 , 121 ] and Africans [ 87 , 107 ]. The remaining migrant groups had one report each. Other areas of Scotland show no clear pattern with studies in disparate migrant population groups.

Number of reports per Strategic and Action Plan (SAAP) Area

SAAP Area mapping

1. establishing a framework for collaborative action.

Nine reports had a primary focus on collaborative action and were categorised under SAAP area 1 (see Fig.  4 ) [ 66 , 70 , 72 , 73 , 103 , 125 , 129 , 132 , 134 ]. Four reports (33%) used a mixed methods study design, the remaining five reports (67%) used a qualitative design. One report [ 66 ] focused on the epidemiology of female genital mutilation and a proposed intervention strategy. One report [ 66 ] focused on the epidemiology of female genital mutilation and a proposed intervention strategy. One report [ 103 ] evaluated service provision to the Roma community in Glasgow. The remaining reports focused on refugees and asylum seekers: four [ 73 , 125 , 132 , 134 ] evaluations of refugee integration projects, one [ 70 ] on services available to pregnant women, and one [ 72 ] an assessment of a peer-education service. One report [ 129 ] was a review of service provisions for migrants during the Covid-19 pandemic. All reports in SAAP area 1 were grey literature and three (37.5%) had a primary focus on migrant health while four (50%) focused on integration, one (11%) included data on ethnic minorities and one (11%) on services during the covid-19 pandemic. The majority (seven reports (78%)) were also categorised to another SAAP area most commonly area 2 (five studies (55%)) or area 5 (four studies (44%)).

2. Advocating for the right to health of refugees

Nineteen reports focused on SAAP area 2, advocating for the right to health of refugees (see Fig.  4 ) [ 47 , 52 , 53 , 54 , 55 , 63 , 70 , 71 , 83 , 103 , 123 , 124 , 125 , 127 , 128 , 129 , 134 , 138 , 140 ]. Sixteen reports (84%) had a qualitative study design and the remaining three (16%) reports used mixed methods. Nine reports (47%) focused on the health impact of the asylum system [ 52 , 55 , 71 , 74 , 123 , 127 , 128 , 129 , 138 ], five (26%) on health and access to care [ 47 , 54 , 83 , 103 , 124 ], two (10.5%) on maternity care [ 63 , 70 ], two (10.5%) on integration services [ 125 , 134 ] and one report on mental health in HIV positive migrants [ 53 ]. Nine reports (47%) had a primary focus on migrant health while the remaining 10 (53%) also involved wider social issues. The majority (15 (79%)) of reports were grey literature. All the articles in this group overlapped with another SAAP area. Area 3 is the most common joint category with ten reports (53%) followed by area 5 with seven reports (37%), area 1 shares five reports (26%), while areas 4 and 8 share one report each (5%).

3. Addressing the social determinants of health

Twenty-nine reports were categorised to SAAP area 3 – addressing the social determinants of health (see Fig.  4 ) [ 13 , 27 , 45 , 50 , 52 , 55 , 60 , 62 , 63 , 65 , 68 , 71 , 74 , 80 , 81 , 82 , 91 , 92 , 93 , 102 , 112 , 123 , 124 , 127 , 128 , 136 , 137 , 138 ]. The majority (14 (48%)) used a qualitative study method, eight (28%) used quantitative methodology and the remaining seven reports (24%) used mixed methods. Nineteen reports (65.5%) were peer-reviewed journals [ 13 , 45 , 50 , 52 , 60 , 62 , 63 , 65 , 68 , 80 , 81 , 82 , 91 , 92 , 93 , 104 , 112 , 124 , 136 , 137 ] and ten (34.5%) were grey literature [ 27 , 55 , 63 , 71 , 74 , 102 , 123 , 127 , 128 , 138 ]. Ten reports (34.5%) discussed the effects of the asylum system on health [ 27 , 52 , 63 , 71 , 74 , 123 , 124 , 127 , 128 , 137 ] and one (3.5%) migration and health [ 50 ]. Six reports (21%) focused on culture and ethnicity [ 82 , 92 , 102 , 104 , 112 , 137 ], five reports (17%) discussed economic and environmental determinants of health [ 13 , 45 , 67 , 81 , 93 ] and five reports (17%) the health impact of social activities [ 55 , 60 , 62 , 80 , 91 ]. Of the remaining reports, one [ 65 ] discussed Brexit and mental health of European migrants and one discussed the effect of coping strategies on wellbeing in Polish migrants [ 68 ]. Most reports, 18 (62%) had a primary focus on migrant health [ 45 , 50 , 52 , 55 , 60 , 62 , 63 , 65 , 67 , 68 , 71 , 80 , 81 , 82 , 91 , 92 , 93 , 102 ], six reports (21%) discussed wider social factors in addition to health [ 74 , 123 , 124 , 127 , 128 , 138 ]. Of the remaining reports three (10%) looked at ethnic background and country of birth [ 13 , 112 , 136 ], one [ 27 ] included other vulnerable groups and one [ 137 ] included people living in China and Chinese migrants to Scotland. Thirteen reports were also categorised to one or more additional SAAP area - ten (34%) were also applicable to area 2 [ 52 , 55 , 63 , 71 , 74 , 123 , 124 , 127 , 128 , 138 ], three (10%) to area 5 [ 63 , 82 , 92 ] and one (7%) to area 4 [ 27 ].

4. Achieving public health preparedness and ensuring an effective response

Twenty-one reports were assigned to SAAP area 4 (see Fig.  4 ) [ 27 , 31 , 35 , 39 , 47 , 57 , 64 , 75 , 76 , 77 , 78 , 94 , 104 , 108 , 109 , 111 , 113 , 114 , 116 , 120 , 135 ] of which fourteen (67%) used quantitative research methods, four (19%) mixed methods and three (14%) qualitative methods. Thirteen (62%) reports were peer-reviewed journals [ 35 , 59 , 64 , 75 , 78 , 104 , 108 , 109 , 111 , 113 , 114 , 116 , 120 ] and eight (38%) grey literature [ 27 , 31 , 39 , 47 , 57 , 77 , 94 , 135 ]. Most reports (12 (57%)) focused on morbidity and mortality in migrant populations [ 31 , 35 , 64 , 75 , 76 , 78 , 104 , 108 , 109 , 113 , 114 , 116 ]. Six (29%) investigated health status and healthcare needs in migrant groups in Scotland [ 39 , 47 , 57 , 77 , 94 , 135 ]. Two reports (9.5%) analysed the epidemiology of HIV infections [ 111 , 120 ] and the remaining report focused on the health needs of young people during the covid-19 pandemic [ 27 ]. Nine reports (43%) had a primary focus on migrant health [ 39 , 47 , 55 , 64 , 75 , 76 , 77 , 78 , 94 ] while eight (38%) also analysed data by ethnicity [ 31 , 35 , 104 , 108 , 109 , 113 , 114 , 116 ]. Of the remaining reports, three (14%) included other populations within Scotland [ 27 , 111 , 120 ] and one (5%) included other characteristics in addition to health information [ 135 ]. Ten reports (48%) were also categorised to another SAAP area; one to area 2 [ 47 ], one to area 3 [ 27 ], four to area 5 [ 47 , 57 , 77 , 135 ], two to area 6 [ 111 , 120 ] and two to area 9 [ 31 , 108 ].

5. Strengthening health systems and their resilience

Twenty-nine reports were assigned to SAAP area 5 (see Fig.  4 ) [ 18 , 47 , 48 , 49 , 54 , 57 , 63 , 69 , 70 , 72 , 77 , 79 , 82 , 83 , 92 , 95 , 96 , 97 , 99 , 101 , 103 , 118 , 119 , 126 , 129 , 131 , 133 , 135 , 141 ] of which 23 (79%) used qualitative research methods. Three reports used quantitative methods (10.3%) and the remaining three used mixed methods (10.3%). Twelve reports (41%) examined migrants needs and experiences of health care [ 47 , 49 , 54 , 57 , 58 , 77 , 83 , 95 , 103 , 119 , 129 , 135 ], eight (24%) focused on pregnancy and childcare [ 63 , 70 , 92 , 96 , 97 , 99 , 101 , 118 ] and two (7%) on barriers to healthcare access [ 48 , 131 ]. Two reports (7%) evaluated healthcare programmes [ 72 , 133 ] and two focused on communication in primary care [ 79 ] and maternity services [ 69 ]. The remaining three reports (10%) covered sexual health [ 82 ], health information needs of Syrian refugees [ 126 ] and general practitioner training [ 18 ]. Nineteen (65.5%) were peer reviewed journals [ 18 , 48 , 49 , 58 , 69 , 79 , 82 , 83 , 92 , 95 , 96 , 97 , 99 , 101 , 118 , 119 , 125 , 131 , 133 ] and ten (34.5%) were grey literature [ 47 , 54 , 57 , 63 , 70 , 72 , 77 , 103 , 129 , 135 ]. Twenty-one (72%) had a primary focus on migrant health [ 18 , 47 , 48 , 49 , 54 , 57 , 58 , 63 , 69 , 70 , 72 , 77 , 79 , 82 , 83 , 92 , 95 , 96 , 97 , 99 , 101 ]. Six reports (21%) included research on other characteristics or services [ 103 , 126 , 129 , 131 , 133 , 135 ]. The remaining two reports (7%) included ethnic groups as well as migrants in the data [ 118 , 119 ]. Nineteen reports (65.5%) were also assigned to one or more other category areas: five reports (17%) to area 1 [ 47 , 70 , 72 , 103 , 129 ], five reports (17%) to area 2 [ 54 , 63 , 83 , 103 , 129 ], three reports (10%) to area 3 [ 63 , 82 , 92 ], four reports (14%) to area 4 [ 47 , 57 , 77 , 135 ], one (3.5%) to area 7 [ 119 ] and one (3.5%) to area 9 [ 48 ].

6. Preventing communicable diseases

Fourteen reports were assigned to SAAP area 6 (see Fig.  4 ) [ 56 , 61 , 87 , 88 , 89 , 90 , 105 , 106 , 107 , 111 , 115 , 117 , 120 , 122 ] of which four (31%) used quantitative methods, five (38%) used qualitative methods and five (38%) used mixed methods. Five reports (38.5%) examined immunisation behaviour [ 56 , 61 , 89 , 90 , 117 ], five (38%) on epidemiology and treatment of HIV [ 106 , 107 , 111 , 120 , 122 ]. The remaining four reports (31%) focused on tuberculosis in healthcare workers [ 115 ], malaria [ 105 ] and sexual health services [ 87 , 88 ]. Only one reports was grey literature [ 88 ], the remainder were peer-reviewed journals. Six reports (46%) had a primary focus on migrant health [ 56 , 61 , 87 , 88 , 89 , 90 ] while seven reports (54%) also included other at-risk groups in the analysis. Four reports (31%) were also assigned to another SAAP category, two (15%) to area 4 [ 111 , 120 ] and two (15%) to area 8 [ 88 , 115 ].

7. Preventing and reducing the risks posed by non-communicable diseases

Eight reports were categorised to SAAP area 7 (see Fig.  4 ) [ 46 , 51 , 59 , 84 , 85 , 86 , 98 , 119 ] of which six (75%) used qualitative research methods, one (12.5%) used quantitative methods and one (12.5%) used mixed methods. Only one report (12.5%) was grey literature [ 59 ] the remaining seven reports (87.5%) were peer-reviewed journals [ 48 , 87 , 92 , 126 , 127 , 128 , 140 ]. Three reports (37.5%) focused on health behaviours [ 51 , 85 , 98 ], two (25%) on mental health, two (25%) on diabetes and one (12.5%) on chronic disease. Seven reports(87.5%) had a primary focus on migrant health [ 46 , 51 , 59 , 84 , 85 , 86 , 98 ], with the remaining report (12.5%) including ethnic minority groups [ 119 ]. One report (12.5%) was also assigned to SAAP area number 5 [ 119 ].

8. Ensuring ethical and effective health screening and assessment

There were six reports assigned to category 8 (see Fig.  4 ) [ 53 , 88 , 100 , 110 , 115 , 121 ] of which two (33%) used a quantitative research method, three (50%) used a qualitative method and one used mixed methods. One report (14%) was grey literature [ 88 ] the remaining five reports (83%) were peer reviewed journals [ 53 , 100 , 110 , 115 , 121 ]. Three reports (50%) focused on cancer screening in migrant women [ 21 , 100 , 110 ], one (17%) analysed access to HIV testing among African migrants [ 53 ], one (17%) on T.B in healthcare workers [ 72 ] and one (17%) on sexual health [ 36 ]. Three reports (50%) had a primary focus on migrant health [ 53 , 88 , 100 ] while the remaining three reports (50%) included other at-risk groups in the analysis [ 110 , 115 , 121 ]. There were three reports which overlapped with other SAAP areas: one [ 53 ] (17%) was categorised to area 2 while two [ 88 , 115 ] (33%) were categorised to area 6.

9. Improving health information and communication

Three reports were assigned to SAAP area 9 (see Fig.  4 ) [ 31 , 108 , 130 ]. One of these (33%) used a qualitative approach, one (33%) used a quantitative approach and one (33%) used mixed methods. Two [ 108 , 130 ] (66%) were peer-reviewed journal articles and one [ 31 ] (33%) was grey literature. Two reports (66%) focused on improving migrant demographics and health information using databases [ 31 , 108 ] while one (33%) described an information-needs matrix for refugees and asylum seekers [ 130 ]. Two [ 31 , 108 ] included ethnicities in the data while one [ 130 ] had a primary focus on migrant health. Two reports [ 31 , 108 ] (66%) also applied to SAAP area 4 while one report [ 130 ] (33%) was in SAAP area 9 only.

To our knowledge this is the first scoping review conducted on migrant health in Scotland. A previous rapid literature review [ 94 ] found most research focused on health behaviours, mental health, communicable disease and use of and access to healthcare; however, the review limited migrant definition to those who had immigrated within five years and asylum seekers were not included.

In our review, the majority of reports were published from 2013 onwards, aligning with the expansion in migrant research internationally [ 142 ]. 52% used qualitative research methods, 28% used quantitative methods and 20% used mixed methods. 58% focused on migrant health: the remaining papers included other populations or health as part of a wider remit. Research funding was mostly provided by the Scottish Government, NHS, refugee charities and Universities. No studies received funding from the private sector, although this sector has the potential resource and capacity to play a key role in funding future research to improve migrant health in Scotland. Geographically, most studies took place in Glasgow (36%), nationwide (38.5%) or Edinburgh (16%) – other areas were under-represented including Aberdeen (5%), despite being the city with the largest migrant population [ 30 ]. There was a lack of studies in rural localities. These findings concur with a UK migrant health review by Burns et al. [ 23 ] where research was concentrated in larger cities and data was sparse in rural areas relative to the migrant population.

Half of the research identified that was conducted in Glasgow focused on asylum seekers/refugees. Glasgow was previously the only Scottish city to host asylum seekers [ 143 ] and currently supports the most asylum seekers of any local authority in the UK [ 29 ]. In April 2022, the UK government widened the Asylum dispersal scheme to all local authorities [ 144 ]. Around 70% of Scotland’s refugee support services are based in Glasgow and the South-west [ 145 ]. As reduced access to services may impact the health of asylum seekers, research in Glasgow may not be generalizable to other regions of Scotland.

Almost one-third (30%) of all reports focused on asylum seekers and refugees – an overrepresentation given that only 18% of migrants to the UK are asylum seekers [ 146 ] and as low as 2% of all migrants in Scotland [ 147 ]. Asylum seekers and refugees are at risk of poor health due to trauma, difficult journeys, overcrowded camps, poor nutrition and lack of access to healthcare [ 148 ]. They have worse maternity outcomes and increased rates of mental illness [ 149 ]. Increased research on health of asylum seekers and refugees is necessary due to their additional vulnerabilities [ 142 ]. However, asylum seeker’s country of origin was generally not specified. Asylum seekers have heterogenic backgrounds [ 150 ] and nationality and trauma experience affect health status [ 151 ]. Further research focused on specific nationalities of asylum seekers would enhance understanding of the health needs in this population.

Almost one-third (31%) of studies did not specify a migrant group. This concurs with a Norwegian migrant health study by Laue et al. [ 152 ] where 36% of research did not identify country of birth. Where nationality was identified, Polish, African and South Asian were most prevalent. Poles are the largest migrant group in Scotland, however for the other most common immigrant groups of Irish, Italian and Nigerian [ 30 ] there was an absence of research. No studies took place on Nigerian migrants – nine studies indicated African populations, but country of birth was not specified. Since March 2022, 23,000 Ukrainians have migrated to Scotland [ 153 ], however no studies on Ukrainians were identified currently. Research may be underway which is yet to be published.

Only one study explored the impact of Brexit on European migrants’ health despite 56% of migrants to Scotland being EU nationals [ 30 ]. Again, research may be taking place currently, which is yet to be published. No studies involved undocumented migrants despite this populations’ high rates of poor physical/mental health exacerbated by poor housing and working conditions [ 154 ]. An estimated 7.2–9.5% of the workforce in the UK are migrant workers who have higher risks of poor working conditions and injury [ 155 ]. Scotland depends on a migrant workforce for some industries such as agriculture [ 156 ] but only two research papers specified migrant workers.

Most research papers related to the right to health of refugees (SAAP 2), social determinants of health (SAAP 3), public health planning (SAAP 4) and strengthening health systems (SAAP 5). Areas with less research were frameworks for collaborative action (SAAP 1), preventing communicable disease (SAAP 6), preventing non-communicable disease (SAAP 7) and health screening and assessment (SAAP 8). Only three studies related to improving health information and communication (SAAP 9). Lebano et al. [ 12 ] conducted a literature review of migrant health in Europe and found data collection unreliable and disorganised. There is a lack of data on the numbers and types of migrants entering Scotland and research tends not to differentiate between ethnic minorities and migrants [ 94 ]. As poor-quality information hinders surveillance and planning of services SAAP area 9 is an important consideration for increased research.

Villarroel et al. [ 24 ] also found more research in SAAP areas 3 to 5 and less in areas 6 to 9. However, their study returned no results in category 1, collaborative action, or 2, the right to health of refugees, while this study assigned 9% of articles to category 1 and 19% to category 2. Most articles in our study relating to categories 1 and 2 were grey literature, which was excluded from the original Irish scoping review. This highlights a potential difference in the focus of peer-reviewed articles compared to government/refugee charity commissioned reports. Collaborative action and the right to health of refugees and asylum seekers are entwined in Scotland due to the complex policy environment; the social determinants of health such as housing, education, welfare rights and social integration are influenced by a variety of UK and Scottish statutory bodies as well as third sector organisations [ 157 ]. Despite this complexity, organisations work well together [ 158 ]. Further academic research in this area would enhance joint working practices and networks.

A scoping review in the UK [ 23 ] found similar quantities of research corresponding to SAAP areas 3, 2 and 9. However in Scotland areas 1, 5 and 8 were a combined 44% of included papers compared with 27.8% of results on health systems and structures in Burns et al’s [ 23 ] study. Almost half of the articles in SAAP areas 1,5 and 8 were grey literature, which was not included in Burns et al’s [ 23 ] review. Conversely, Burns et al. [ 23 ] found 81.9% of research in the UK related to epidemiology, equivalent to SAAP categories 4,6 and 7. In a Norwegian scoping review of migrant health [ 152 ] 65% of research was related to epidemiological data on health and disease. Only 42% of the research in this current study related to epidemiological data; the quantity of evidence was reduced by excluding combined research from the UK. As Scotland has higher mortality and morbidity than elsewhere in the UK [ 29 ] it is important to undertake further epidemiological research limited to Scotland.

Strengths and weaknesses

Strengths of this review include the use of the WHO’s SAAP categories [ 7 ] to classify data, in accordance with the Villarroel et al’s [ 24 ] study: this means results are linked to policy on migrant health and facilitates comparability to the Irish study results. Additionally results include data on migrant groups, locality, and funding of included papers; these highlight potential omissions for future research consideration. Results include diverse research methods and published and grey literature giving a wide overview of available evidence, reported using the Preferred Reporting Items for Systematic reviews and Meta-Analyses for Scoping Reviews (PRISMA-ScR) checklist (see Additional File 3 ) [ 159 ].

Limitations included the lack of an open-access protocol and search limitations of English language and selected databases. This means some relevant reports may be omitted. Due to time and resource limitations no quality appraisal was planned for included reports. Whilst we did not synthesise the findings for each topic area and migrant group, future systematic reviews could be undertaken to address this limitation and build on this work.

Conclusions

Immigration and ethnic diversity in Scotland have increased since 2002 which is reflected in the expansion of migrant health research. This review highlights evidence gaps including a lack of research in rural areas, undocumented migrants and migrant workers. There is a tendency to cluster asylum seekers together rather than differentiate between national groups. Within the SAAP areas there is less evidence relating to collaborative action, preventing communicable disease, preventing non-communicable disease and health screening and assessment. Further research is required on improving health information and communication for migrant populations in Scotland – a significant omission given the importance of accurate information for health service planning.

Availability of data and materials

All data analysed during this review comes from the papers listed in Additional file 2 .

Abbreviations

European Union

Human Immunodeficiency Virus

National Health Service

Strategy and Action Plan

The Scottish Health and Ethnicity Linkage Study

United Kingdom

World Health Organisation

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Acknowledgements

Thank-you to Professor Anne MacFarlane and PHD student Anne Cronin, of the University of Limerick, Ireland for sharing the coding guidelines currently used in an update to Villarroel et. al’s 2019 study on Migrant Health in the Republic of Ireland.

No funding was received for this work, which was undertaken as G. Petrie’s Master of Public Health dissertation module at the University of Stirling.

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KA, RO and GP finalised the study design collectively. GP conducted the searches, analysis and write up, with support from KA and RO. All three authors read and approved the manuscript prior to submission.

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Petrie, G., Angus, K. & O’Donnell, R. A scoping review of academic and grey literature on migrant health research conducted in Scotland. BMC Public Health 24 , 1156 (2024). https://doi.org/10.1186/s12889-024-18628-1

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DOI : https://doi.org/10.1186/s12889-024-18628-1

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