community health workers qualitative research

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Open Access

Peer-reviewed

Research Article

Community health workers experiences and perceptions of working during the COVID-19 pandemic in Lagos, Nigeria—A qualitative study

Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Resources, Software, Validation, Visualization, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Affiliation College of Medical and Dental Sciences, University of Birmingham, Birmingham, England, United Kingdom

Contributed equally to this work with: Tolulope Olufunlayo, Christine MacArthur, Beck Taylor

Roles Conceptualization, Methodology, Supervision, Writing – review & editing

Affiliation Department of Community Health and Primary Care, College of Medicine, University of Lagos, Yaba, Lagos State, Nigeria

Affiliation Department of Maternal Health, Institute of Applied Health Research, University of Birmingham, Birmingham, England, United Kingdom

Roles Methodology

Roles Conceptualization, Formal analysis, Methodology, Supervision, Validation, Writing – review & editing

Affiliation Department of Public Health, Institute of Applied Health Research, University of Birmingham, Birmingham, England, United Kingdom

• Zahra Olateju, 
• Tolulope Olufunlayo, 
• Christine MacArthur, 
• Charlotte Leung, 
• Beck Taylor

• Published: March 8, 2022
• https://doi.org/10.1371/journal.pone.0265092
• Peer Review
• Reader Comments

Community Health Workers are globally recognised as crucial members of healthcare systems in low and middle-income countries, but their role and experience during COVID-19 is not well-understood. This study aimed to explore factors that influence CHWs’ ability and willingness to work in the COVID-19 pandemic in Lagos.

A generic qualitative study exploring Community Health Workers experiences and perceptions of working during the COVID-19 pandemic in Lagos, Nigeria.

15 semi-structured, in-depth, video interviews were conducted with Community Health Workers purposively sampled across seven of Lagos’ Local Government Areas with the highest COVID-19 burden. Interviews explored Community Health Workers’ attitudes towards COVID-19, its management, and their experiences working in Lagos. Data was analysed thematically using the framework method.

Three main themes were identified. 1 . Influences on ability to undertake COVID-19 Role : Trust and COVID-19 knowledge were found to aid Community Health Workers in their work. However, challenges included exhaustion due to an increased workload, public misconceptions about COVID-19, stigmatisation of COVID-19 patients, delayed access to care and lack of transportation. 2 . Influences on willingness to work in COVID-19 Role : Community Health Workers’ perceptions of COVID-19, attitudes towards responsibility for COVID-19 risk at work, commitment and faith appeared to increase willingness to work. 3 . Suggested Improvements : Financial incentives, provision of adequate personal protective equipment, transportation, and increasing staff numbers were seen as potential strategies to address many of the challenges faced.

Despite Community Health Workers being committed to their role, they have faced many challenges during the COVID-19 pandemic in Nigeria. Changes to their working environment may make their role during disease outbreaks more fulfilling and sustainable. International input is required to enhance Nigeria’s policies and infrastructure to better support Community Health Workers during both current and future outbreaks.

Citation: Olateju Z, Olufunlayo T, MacArthur C, Leung C, Taylor B (2022) Community health workers experiences and perceptions of working during the COVID-19 pandemic in Lagos, Nigeria—A qualitative study. PLoS ONE 17(3): e0265092. https://doi.org/10.1371/journal.pone.0265092

Editor: Khin Thet Wai, Freelance Consultant, Myanmar, MYANMAR

Received: October 9, 2021; Accepted: February 22, 2022; Published: March 8, 2022

Copyright: © 2022 Olateju et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: The data that support the findings of this study are not publicly available due to them containing information that could compromise research participant privacy. The authors did not seek ethical permission from the participants, nor the ethics committee, for the data to be used for anything other than this particular research study. The authors therefore do not have explicit permission for data sharing, re-analysis nor future studies and so would be inappropriate and unethical to make them available in the public domain. While anonymised, the data contains potentially identifying patient information. However, qualified individuals can direct queries by contacting Dr Ruth Riley ( [email protected] ) - chair of the University of Birmingham BMedSci Intercalation Internal Ethics Review Committee.

Funding: The author(s) received no specific funding for this work.

Competing interests: The authors have declared that no competing interests exist.

Introduction

On 30th January 2020, Coronavirus Disease-19 (COVID-19) was declared an international emergency [ 1 ]. By February 2020, the virus had spread to the Sub-Saharan country Nigeria which [ 2 ], as of August 10, 2021, had reported over 178,000 cases and 2,187 deaths [ 3 ].

Access to healthcare in Nigeria remains a profound problem [ 4 ]. Socioeconomic inequalities and geographical inaccessibility across both urban and rural communities have caused unequal healthcare use across the country [ 4 ]. Community Health Workers (CHWs) play a key role in trying to combat this problem. As trained members of the public, they use their skills to provide healthcare, and to educate their communities [ 5 , 6 ]. There are different types of CHWs, each receiving varying levels of training. Community health extension workers (CHEWs) receive two to three years of “health-related training”, approved by the Community Health Practitioners Registration Board of Nigeria [ 7 ]. This includes over 90 hours of lectures and “competency-based training” which gives them the skills to provide basic primary care as recognised by Nigeria’s national policy [ 7 ]. Other CHW types receive training focused on improving primary health care delivery in Nigeria [ 8 ]. This includes training on: “environmental sanitation”, “immunisation”, “health education and community mobilisation”, “treatment of minor ailments”, “water and sanitation”, “nutrition and growth monitoring” and “essential drug supply” [ 8 ]. CHWs’ contribution to healthcare, particularly within low and middle-income countries (LMICs), has been globally recognised [ 9 – 12 ]. They provide care such as antenatal services, HIV and TB management, maternal, neonatal and child services and routine immunisation [ 9 , 13 ]. Their close relationships with community members, who are often underrepresented in society [ 11 , 12 ], aid in bridging the gap between the community and the healthcare systems [ 14 ]. By raising community awareness and implementing contact tracing, CHWs have proven to be imperative in limiting viral transmission during pandemics [ 9 , 10 , 15 , 16 ]. Throughout the 2014–6 Ebola outbreak, they acted as contact tracers and active case finders, whereby any suspected cases found were isolated and referred to treatment centres [ 17 ]. More recently, during the COVID-19 pandemic, CHWs have aided in the home delivery of medications [ 18 ], follow up of patients [ 19 ], health education [ 20 ], nutrition screening, vaccine delivery [ 21 ] and psychological and social support [ 22 , 23 ].

Despite Lagos reporting a high number of COVID-19 cases, there are fears that these figures may underrepresent the true impact of the pandemic [ 24 ]. It is believed that due to the social and economic challenges of COVID-19, many undetected cases exist within communities [ 24 , 25 ]. The longer-term effects of this are becoming a growing concern due to its potential adverse health effects [ 26 , 27 ]. Provision of healthcare services for those with non-COVID-19 related health problems, such as malaria, tuberculosis and cholera, has also reduced substantially since the start of the pandemic [ 26 , 27 ]. COVID-19 pressures mean that many struggle to access care due to lockdown measures, restricted movement and reduced household income resulting from limited work opportunities [ 26 ]. Additionally, as uptake of healthcare has decreased due to public fear of infection, increased morbidity and mortality from a spectrum of diseases is expected [ 26 ]. Whilst the ultimate consequence of this is yet unknown, the potential effects could be damaging, and understanding and supporting the role of CHWs in health systems is arguably more important now, than it has ever been.

In 2020, Mayfield-Johnson et al conducted a focus group study with seven CHW leaders in the United States to explore the impact of COVID-19 on their role, which suggested that CHWs’ fear of contracting COVID-19 reduced their motivation, though they remained resilient to continue to support community members [ 11 ]. However, as CHWs are integral in healthcare delivery in LMICs such as Nigeria, research needs to be conducted in these settings to understand the effects of the COVID-19 pandemic on their role [ 9 ]. Earlier in the pandemic, a rapid evidence synthesis had suggested that incentives such as bonuses may be useful in increasing CHWs’ motivation [ 9 ]. More recent expert opinion suggested that the main challenges faced by CHWs in Nigeria were “mistrust of political entities”, overwhelming workload, “stigma and misinformation”, “limited testing capacity” and “poor adherence to quarantine and isolation” [ 28 ]. However, we have not identified any published qualitative interview studies with frontline CHWs in Nigeria which explore their perspectives and experiences.

Materials and methods

Aims and objectives.

This study aimed to explore factors that influence CHWs’ ability and willingness to work in the COVID-19 pandemic in Lagos, Nigeria, and to identify how to better support CHWs during disease outbreaks.

Study design

This was a generic qualitative study [ 29 ] that involved conducting remote semi-structured interviews to elicit an in-depth understanding of participants’ views [ 30 ]. A generic study design was chosen, guided by our research aims and provide a rich description of the perspectives of CHWs regarding their willingness and ability to work, and support needs throughout the pandemic, without claiming an “explicit or established set of philosophic assumptions” [ 29 , 31 ].

This study was conducted in Lagos, Nigeria’s most populous city, with over 21 million citizens from many ethnic backgrounds [ 32 ]. It is located in the south-west of the country and is divided into five administrative divisions comprising of 20 Local Government Areas (LGAs), which can be categorised as either urban or rural [ 33 ]. As of June 9, 2021, Lagos reported over 59,000 COVID-19 cases [ 34 ]. LGAs contributing a high proportion to the COVID-19 burden in the state were included in the study (Lagos Mainland, Surulere, Ikeja, Alimosho, Eti-Osa, Kosofe and Mushin) [ 35 , 36 ].

CHWs were sampled purposively from LGAs with a high COVID burden, and further participants were recruited using snowball sampling to ascertain data-rich interviews [ 37 – 39 ]. To allow the Principal Researcher (ZO) to interview until data saturation, the research team aimed to recruit 15–20 participants hence both sampling techniques were used [ 40 ]. All cadres of CHWs were sought who fitted the eligibility criteria which were: over 18 years, able to speak fluent English and a CHW who worked during the COVID-19 pandemic in Lagos.

Recruitment

Recruitment and data collection occurred simultaneously during March and April 2021. Due to the COVID-19 pandemic, recruitment was conducted remotely with the aid of a senior researcher based in Lagos. The research team recruited participants through the Medical Officers of Health, who helped to identify CHWs who fitted the eligibility criteria. Once identified they helped to establish appropriate communication channels for recruitment. In addition, the senior researcher contacted CHWs whom she knew from previous research projects. To ensure a diverse representation, both salaried and voluntary CHWs were recruited across both sexes. Interested individuals were contacted, screened for eligibility, sent a copy of the participant information leaflet (PIL) and consent form prior to their interview before giving informed consent. Researchers completed the PLOS inclusivity in global research questionnaire, as this research was conducted outside the researcher’s own country ( S2 Fig ).

Data collection

Semi-structured interviews were conducted following a topic guide ( S1 Fig ) created from research team input. Topics included personal and societal attitudes to COVID-19, experiences of working during the pandemic and management of the pandemic in Lagos. A pilot interview, with a senior researcher (TO), was conducted for topic guide refinement [ 41 ]. Data from this was not included in analysis. Remote interviews, using Zoom, were conducted by ZO, based in the UK, in English. Interviews were video- and audio-recorded. After each interview, participants were compensated with a phone card voucher and ZO documented their initial impressions which aided in the identification of the point of data saturation as well as identifying developing themes [ 40 ].

Data analysis

Data analysis was inductive and iterative which allowed for topic guide refinement for subsequent interviews. Thematic analysis was undertaken using the framework method [ 42 ]. This consisted of seven stages of analysis: Transcription; familiarization with the interview; coding; developing a working analytical framework; applying the analytical framework; charting data into the framework matrix; and interpreting the data. Initially, ZO transcribed all interviews verbatim. Following this, ZO became familiar with the data by listening to interview audio recordings, reading the transcripts at least twice and reading the field notes. Subsequently, three transcripts were inductively independently open coded by ZO and a senior researcher (BT), and a further two transcripts by ZO and another researcher (CL). Inconsistencies in coding were discussed and addressed. Following coding of initial transcripts, a working, hierarchical analytical framework was developed in collaboration with the wider team, and ZO applied this framework to the rest of the dataset. Subsequently, data was charted into a framework matrix, incorporating the data from the demographic questionnaire to contextualise findings. Following this, ZO used the framework matrix to interpret the data and develop themes, working with the wider team to reflect and refine interpretation. Data management and analysis was facilitated using QSR NVivo 12.

The research team adopted a reflexive, inductive process to ensure transparency in the study methods, consider how they may have influenced the data collection and analysis processes, and reduce bias [ 43 , 44 ].

Ethics statement

Ethical Approval for this study was granted by the University of Birmingham Internal Ethics Review Committee (Reference: IREC2020/1760475) and Lagos University Teaching Hospital Health Research Ethics Committee (Reference: ADM/DCST/HREC/APP/4054). Permission to work with CHWs was granted by the Lagos State Primary Health Care Board. Before the interviews, verbal consent was obtained from all participants after explaining the research to them.

There were 15 participants interviewed, with interviews lasting on average 46 minutes. They included four Community Health Officers (CHOs), six CHEWs, four Community Mobilisers, and one Community Volunteer, with an average age of 42 years. Participant roles before the pandemic included door-to-door health education and delivering healthcare at community clinics. However, during the pandemic, most participants took on additional responsibilities. In general, CHEWs, Community Mobilisers and Volunteers were required to educate community members on COVID-19, undertake active case search, contact tracing, refer individuals for a COVID-19 test, deliver medications and administer the COVID-19 vaccination. CHOs had a managerial role supervising other CHWs and ensuring that COVID-19 patients received at-home care. The distribution of participant demographics is shown below in Table 1 .

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https://doi.org/10.1371/journal.pone.0265092.t001

Three themes were developed after data analysis: (1) ‘Influences on ability to undertake COVID-19 Role’ and (2) ‘Influences on willingness to work in COVID-19 Role’ and (3) ‘Suggested Improvements’. Each theme had several sub-themes as shown in Table 2 .

https://doi.org/10.1371/journal.pone.0265092.t002

1. Influences on ability to undertake COVID-19 Role

Several participants felt that their pre-existing trust with community members significantly aided them in asking questions, obtaining information, and educating communities about COVID-19 and its prevention. As members of the communities they were educating, participants could often relate to the population, speak their language, and successfully immerse themselves within the community.

“ People in my community know me so well that is why it was a bit easy for me to ask them questions” [P1]

CHW knowledge about COVID-19.

All participants demonstrated broad knowledge of COVID-19 due to the training they received. However, one participant believed that the virus affects the liver. Most participants were aware of the virus’ mode of transmission, with sneezing, direct contact with an infected person and cough being frequently referenced. The elderly, frontline workers, and individuals with comorbidities were seen as more at-risk due to a diminished immune response and increased viral exposure. This knowledge aided them in delivering health education as well as ensuring that at-risk individuals were quickly tested for COVID-19 and received appropriate healthcare.

“ COVID-19 is a very deadly disease and it is transmitted through […] sneezing and […] maybe the person did not wash their hands and they use their hand to touch any surface , anybody that touch the surface contact it , so we enlighten our people about all this” [P12]

Exhaustion.

Participants found their role during the pandemic physically and emotionally draining, due to the extra responsibilities COVID-19 added to their normal role. Participants also described the negative personal impact of patients not listening to CHW advice, and community members expecting provision of PPE from CHWs or the Government.

“ Oh my experience […] it wasn’t really fun I tell you it […] wasn’t funny it was […] draining physically draining emotionally” [P5]

A few participants discussed social stigmatisation of COVID-19 patients which caused many individuals not to disclose their COVID-19 infection when presenting to facilities, increasing participants’ potential exposure. Consequently, CHWs reported difficulties in identifying COVID-19 cases in the community. The psychological impact of stigmatisation was highlighted by one participant who discussed that COVID-19 is viewed as a “death sentence” relating how some patients reported depressive symptoms following diagnosis. Therefore, continuous patient follow-up was seen as essential.

“ Even those that confirmed , they do not want to come out and say they have it because of fear of stigmatization too” [P5] “ We have to follow them or some of them once they get home […] say I have […] depression , depression might set in because they go home and be thinking that this is the end of their life” [P8]

Public misconceptions about COVID-19.

Tackling public COVID-19 perceptions was a major challenge emphasised by all participants. Some individuals were reported not to believe that COVID-19 was a reality, making it harder for CHWs to encourage adherence to Government guidelines, with some participants reporting arguments with people who refused to follow guidelines. Participants attributed this to individuals believing it only exists in other countries, limited exposure to COVID-19 patients, and confusing COVID-19 with malaria due to similar disease presentations.

“ They believe that there’s nothing like COVID even some people will tell you it’s just malaria it’s severe malaria” [P13]

However, the most referenced factor was mistrust in the Government. Many participants expressed that some individuals believed that COVID-19 was being used by the Government to “scam” them.

“ That the Government are using it to embezzle money some that say there is nothing like COVID-19 in Nigeria generally it is existing abroad” [P9]

Participants stated that, in the previous few months, public misconceptions surrounding COVID-19 vaccination had become more prevalent. Misconceptions included vaccine risks, such as blood clots, post-vaccination breakthrough infection, and thinking that preventative measures do not need to be followed by vaccinated individuals. Therefore, participants found increasing public COVID-19 vaccination uptake difficult. Social media was seen as the main source of public misinformation, hence several participants stressed the need for CHWs to continuously educate communities with the right COVID-19 information to minimise the impact of such beliefs, adding further responsibility to the CHW role.

“ After sensitizing a particular community just give them few days . By the time you […] go back to see […] how far they’ve been able to make use of what I’ve told them you’ll discover that you have to start all over again” [P5]

Some participants emphasised that the public frequently did not adhere to COVID-19 protocols due to hunger within communities, people experiencing breathing difficulties when wearing face masks, and unaffordable PPE. These factors often made it difficult for CHWs to encourage individuals to follow disease guidance.

“ People have […] to eat , their children have to be taken care of , their home has to be taken care of , so it wasn’t that easy for them to […] really comply with all the guidelines” [P4]

Delayed access to care.

Several participants highlighted that in the initial months of COVID-19 many patients were not accessing healthcare facilities due to fears of being diagnosed, getting infected, and/or not being attended to by healthcare professionals. Participants expressed that this made some patients unreachable, requiring more frequent CHW visits to the community. Patients were also reported to frequently present late with more severe symptoms, making it difficult for CHWs to perform in their role. However, participants acknowledged that through their community sensitisation and health education, access to care has significantly increased.

“ During the COVID period […] the turnout was very poor because they believe that anybody that came to Government hospital during the COVID period we are going to diagnose them with COVID” [P13]

Lack of transportation.

Three participants working in rural LGAs expressed that, during the initial lockdown, finding transportation to their duty post was extremely difficult, especially without access to their own vehicle. This was concerning for participants, as they could not perform in their role without access to the community.

“ But others that don’t have vehicle […] it is very difficult for them to get to […] their place of work” [P13]

2. Influences on willingness to work in COVID-19 Role

Chw perceptions of covid-19..

All CHWs’ views towards the pandemic were dependant on personal experience. Several participants acknowledged it disrupted people’s livelihoods, with the most discussed impacts being redundancies, closed businesses, families struggling both financially and socially, and inflation of commodity prices. Despite participants’ initial overarching negativity, they expressed a temporal change in their COVID-19 risk perception. Current COVID-19 prevalence in Lagos was perceived to be low, and participants were less concerned about COVID-19 compared to February 2020. Therefore, CHWs were more comfortable and eager to work, as they were less worried about their own personal chance of becoming infected.

“ Interviewer : And how would you feel if [ … ] you were diagnosed with COVID […] ? [P1]: Before now if you had asked me this I would ’ ve said oh my God I’m gonna die but now no”

Several participants highlighted that this temporal change was linked to a few underlying influences, including participants comparing COVID-19 to previous epidemics such as Ebola and Yellow Fever. Participants’ perceptions varied from some considering COVID-19 to be the worst epidemic, and others thinking to the contrary. Other influences discussed included COVID-19’s novelty, and the limitations of the Nigerian healthcare system, which increased participants’ perceived threat of COVID-19. CHWs who knew individuals previously infected with and recovered from COVID-19 often viewed it as less of a threat, as they felt that, should they get infected, it would be non-life threatening, furthering their eagerness to work.

“ Ebola one is harder this COVID-19 is not all that hard if you can just obey what they have told you to do the social distance , personal hygiene , face mask […] I feel COVID-19 is still better” [P8] “ Somebody told me that he got infected but now he is fine so I won’t feel any bad” [P1]

An overarching theme across all participants was having adapted to life in COVID-19, which manifested in following COVID-19 protocols, changing hobbies, and general lifestyle activities. As participants had adjusted, they had become more willing to work, due to increased familiarity with the pandemic and its restrictions.

“ The COVID-19 pandemics is […] a global phenomenon that has changed our […] lifestyle to a new normal we are presently adapting to a new lifestyle” [P14]

CHW perceptions of government COVID-19 response.

Many participants acknowledged that the Government had tried their best to tackle COVID-19, by setting up isolation centres and distributing food, and free home care kits to infected individuals. They also cited Government collaboration with organisations, such as the African Centres for Disease Control, the World Health Organisation and the Nigerian Centre for Disease Control. However, several participants highlighted that due to Nigeria’s large population and limited resources, authorities could not support everyone. A sense that the authorities were trying their best appeared to encourage some participants to try their best in their role too.

“ When it comes to Government […] they can’t help everybody […] the population the resources are not enough to go around” [P9]

Body language from several participants suggested that they were hesitant to criticise the Government’s COVID-19 response. When asked, one participant responded with: “I don’t want to answer it . ” However, another participant discussed that more could be done to ensure the Government leads by example, as there were some occasions where authorities did not adhere to COVID-19 protocols. Whilst not explicitly stated, this could be important in encouraging public adherence to COVID-19 guidelines, and CHWs’ willingness to work. In particular, they mentioned that during election campaigns some individuals were not complying with COVID-19 guidelines.

“ An election where you allow a candidate to partake in campaigning without observing the protocol and election where you converge people […] at your own expense , […] because of the political gain and you’re saying that social distance should be observed” [P14]

CHW perception of COVID-19 risk in work role.

The majority of participants demonstrated awareness of their increased risk of COVID-19 exposure through their role, and how there was uncertainty surrounding their exposure due to interacting with patients who have not yet had a COVID-19 test. Despite this, participants were still willing to work as they felt that exposure to diseases was part of their role as healthcare workers.

“ To the exposure […] as a frontline health worker we can’t say we are not exposed and we cannot say we are exposed” [P2]

Some participants expressed fear due to COVID-19’s unfamiliarity. However, many participants had previous experience working in disease outbreaks, so they remained willing to work. Some participants discussed being concerned about their own personal COVID-19 risk due to a lack of beds in Nigerian hospitals. These participants also remained willing to work, though they reported using more PPE.

For several participants, more focus was placed on taking personal responsibility for their infection control and COVID-19 risk. Employers provided PPE for most CHWs, but this was often deemed inadequate, leading to many participants buying their own protection and changing their health behaviours. This was reported particularly by participants with comorbidities, or at-risk family members at home. Some participants expressed that the inadequate provision of PPE by employers negatively impacted their desire to work, as they felt that their employers should protect them in their role. Most participants gave accounts which suggested that they were falsely reassured by wearing surgical face masks. Most reported that they were protecting themselves and were not aware that they were predominately protecting others.

“ I have not been infected since it started because normally prevent myself [by] wearing mask , at least I double mask” [P11]

Commitment to their role.

All participants expressed a sense of duty and responsibility which was a driving factor in furthering their willingness to work. Many participants felt that as they had been trained for their role, they were needed by their community.

“ You need to be able to assist that’s why you are trained as a health worker you must help others […] I need to do my job” [P15]

For a few participants, their “passion” for the role furthered their eagerness as they loved being a CHW. In particular, one participant discussed that they were willing to work despite the personal risk.

“ Because um I love health . I love taking care of people . […] I love people being well I don’t like people you know I just love being in my community , […] as a community health personnel” [P4]

Many participants also acknowledged their religion played a crucial role in reassurance whilst working. Participants believed that their fate was in God’s hands, lowering their perceived threat of COVID-19, hence increasing their willingness to work.

“ Just by his Grace […] I ain’t worried” [P6]

3. Suggested improvements

Financial incentives..

Participants all stated that improvements are needed to make the role less strenuous and more rewarding. However, no participant said that they would consider leaving the role if improvements were not made (though this was not asked explicitly). The most discussed improvement was financial incentives. Whilst not all participants were salaried CHWs, many felt a form of financial recognition was warranted due to the challenging nature of the role. Most participants stated that despite already receiving an “added allowance” , an additional COVID-19 payment given as recognition for their work, they felt it was not enough and “ not worth the risk” they had been exposed to.

“ They should increase our added allowance . Our added allowance is very poor so […] they should work on that” [P2]

Insufficient PPE provided by employers was deemed unacceptable, due to the considerable COVID-19 risk in the CHW role, as previously mentioned. Therefore, provision of adequate PPE was suggested, to ensure CHWs are protected at all times.

“ They could’ve supported us better with PPE instead of us getting it ourselves” [P1]

Transportation.

Due to the lack of transportation previously discussed, some participants suggested that the provision of transportation for CHWs to and from their duty post during lockdowns, particularly in rural locations, would be invaluable.

“ They could have done to better support us is number one is they will have provide a form of ambulance to take you to your work place and return you back to your house” [P9]

More staff.

Additionally, one participant discussed that due to CHW redeployment to perform community searches, which involves searching for active COVID-19 cases, more staff were required to lighten the individual workload and aid in the continuation of care.

“ I told you we are short of staff a lot because […] they are assigned to do Community search” [P8]

Trust between participants and their community was reported to facilitate the CHW role. This is consistent with existing literature, which suggests CHWs’ close relationships with community members helps to narrow the gap between the healthcare system and community [ 11 , 12 , 14 ]. In our study, the public were more open and welcoming to participants, aiding their ability to get ‘inside information’, quickly access active cases in the community, and swiftly perform contact tracing and successful health education. This is particularly important in LMICs, as the evidence suggests that many COVID-19 cases remain in the community [ 24 ]. Therefore, by working with the public, community transmission, future morbidity and mortality can be reduced [ 24 – 27 ].

Health education was a key component of participants’ role aided by their broad COVID-19 knowledge gained from their pandemic training. Some knowledge inconsistencies were apparent, such as which system is affected by COVID-19 and the benefits of using face masks [ 45 – 47 ]. Formal knowledge testing in other studies has suggested knowledge gaps, which were not explored in depth in our study [ 48 ]. Future training opportunities should aim to rectify this to ensure the correct information is disseminated into the community. Existing quantitative literature has illustrated how CHWs are imperative in increasing public adherence to infection control measures through health education [ 16 ]. Our qualitative findings are consistent with this, with CHWs reporting that health education improved public adherence to guidance by addressing misconceptions. Additionally, as many of the public deferred accessing care due to fears of infection, diagnosis, or not being attended to, health education proved vital in increasing health-seeking behaviours. This is consistent with an existing study however [ 27 ], contradicts other studies which suggest that the provision of healthcare services for non-COVID-19 related problems was scarce in Nigeria [ 25 , 26 ]. Participants expressed that healthcare was always available, however they found that many chose not to access. A key finding was that continuous health education appeared to be required to sustain adherence to guidance. Many participants expressed that re-educating communities is needed to address new misconceptions or misinformation penetrating communities.

The exhausting nature of the CHW role was a consequence of several other challenges faced including social stigmatisation and inaccurate public COVID-19 perceptions. This follows previous studies which suggested that not only are CHWs facing an overwhelming workload but also misconceptions and mistrust are rife within communities, requiring CHWs to remain resilient [ 11 , 28 ]. However, due to the sudden nature of disease outbreaks, such challenges can be expected. Social stigmatisation during pandemics is common [ 49 ], therefore it is important for authorities to disseminate the correct information to the public to reduce stigmatisation and disbelief. However, tackling public mistrust of authorities is imperative in improving future epidemic outcomes and CHW experience. It may be beneficial for future research to explore the origins of mistrust, so that strategies can be implemented to redevelop trust between the community and authorities.

Willingness to work was strongly influenced by CHWs’ sense of duty, passion and faith, despite their increased exposure. A quantitative study suggested that fears of COVID-19 infection diminished CHW motivation for the role [ 50 ]. This study, however, has found that CHWs remained committed, and took personal responsibility for their own infection control, especially if their perceived COVID-19 risk was high, by ensuring they were equipped with PPE, despite it not always being provided [ 10 ]. This contradicts a previous study, which suggested CHWs do not protect themselves properly when exposed to COVID-19 patients [ 48 ]. However, it is consistent with other work which suggested that individuals with a higher perceived risk of infection engage more in preventative measures [ 51 , 52 ]. Future research exploring the use of PPE in CHWs is needed to ensure they are properly protected, with the correct PPE, especially during times when their perceived COVID-19 risk is low. Faith also appeared to play an important role in decreasing participants’ worries about working, through prayer, which has not yet been explored by current studies.

Participants’ COVID-19 perceptions were influenced by the novelty of COVID-19, comparing COVID-19 to previous epidemics, limitations of the Nigerian healthcare system, and knowing individuals who had recovered from a COVID-19 infection. Such factors, according to the author’s searches, have not yet been explored by current literature, therefore provide novel insight into factors influencing CHWs’ willingness to work. Time, however, had the largest influence. In the long term, COVID-19 was viewed as a low risk which may be due to increased familiarity and experience, leading to participants feeling more comfortable working. Similar associations between time and risk perception have been seen in previous studies, and positively correlate with increased healthy behaviours [ 53 , 54 ]. Awareness of these factors may help employers better support CHWs during pandemics. However, these factors are individual and country-specific. Most participants suggested they held positive perceptions towards the Nigerian Government COVID-19 response. This proved important in furthering their willingness to work and increased adherence to Government policies, which aligns with existing work [ 55 ]. However, participant hesitancy to comment on the Government’s response did not allow for full exploration, so future research exploring CHWs’ true perceptions would be beneficial.

Financial incentives, sufficient PPE, transport provision, and increased numbers of CHWs were the main improvements suggested by participants. A previous study suggested that financial incentives increase motivation in CHWs; however [ 9 ], as this study evidenced, incentives need to be viewed as worthwhile by CHWs to have a noticeable impact on motivation. A recent study discussed the need for adequate PPE provision for frontline workers [ 10 ]. However, widespread PPE provision had not been implemented across Lagos at the time of writing. To the authors’ knowledge, the other suggested improvements have not yet been explored by existing literature, therefore offers novel insight into bettering the CHW response.

Infrastructure changes are required to reduce poverty, hunger and make PPE more affordable, aiding in increasing adherence to disease policies [ 56 , 57 ]. Implementing rapid hiring, training, and deployment of CHWs in emergencies may help to improve their work environment, reduce individual workloads and manage public stigmatisation and misconceptions. Faster purchasing and distribution of PPE, transport provision for CHWs working in rural settings, and more training are also required to better prepare CHWs to face challenges previously experienced in epidemics [ 9 , 58 ]. However, long-term funding will be required as these suggestions may not be financially viable in Nigeria [ 59 ]. Policymakers should prioritise improvements based on need, and work with non-governmental organisations to fund and implement them. This could have wide-ranging benefits to the Nigerian health system, as a country with recurrent disease outbreaks, as well as better equipping CHWs to work in current and future epidemics.

Strengths and limitations

This study has provided novel insight into CHWs’ experiences and perceptions of working during COVID-19 in Lagos. Participant diversity was maximised by purposively recruiting male and female participants across urban and rural LGAs.

The majority of participants were female; however there did not seem to be any gender-based differences in findings. Participants were restricted to CHWs fluent in English, therefore findings may not be representative of all CHWs in Lagos. The involvement of CHWs in the COVID-19 vaccination program meant that fewer CHWs were available for recruitment, and it wasn’t possible to recruit CHWs from all cadres. However, of the 17 individuals approached, 15 were available. As both purposive and snowball sampling were used, our results may not indicate the opinions of the majority of CHWs in Lagos. Understanding of cultural context in transcripts and developing themes were provided by TO, a senior Nigerian public health doctor. The study was conducted remotely and there were occasions where the internet connection was interrupted, and verbal communication was less clear. Power imbalances between participants and the principal researcher, a Black, female medical student, and the links with a senior public health professional and academic institution may have affected CHWs’ willingness to speak freely. To mitigate this, rapport building was facilitated, participants were encouraged to speak openly, and reassured about confidentiality. In addition, field notes and regular debrief meetings facilitated adoption of a reflexive process. Data saturation was not fully reached as some new information was identified in the final interviews. Therefore, additional studies are needed to further explore the experiences and perceptions of CHWs which the current study was not able to cover.

This study has highlighted that CHWs are a committed and crucial part of the Nigerian pandemic response. They remained dedicated and central to the success of its pandemic policies through public health education, active case finding, and vaccinations among other commitments. More specifically, this study demonstrated the factors affecting CHWs’ ability and willingness to work during COVID-19 in Lagos which can help inform how to better support them in their role, strengthening Nigeria’s disease response. Despite facing many challenges during the COVID-19 pandemic, CHWs remained devoted to their role in order to protect their communities. However, there is a need for improvement in their work environment. As a country with frequent disease outbreaks, CHWs form an important part of the frontline. Therefore, quick change to ease their strenuous role is needed, to ensure that they can continue to support communities. This could be done through better financial recognition, adequate PPE and transport provision, and by providing more staff. However, international support will be required to ensure this is financially viable and sustainable in the long term. Therefore, collaboration with non-governmental organisations is needed to fund the strengthening of Nigeria’s CHW workforce for future disease outbreaks.

Supporting information

S1 fig. interview topic guide..

https://doi.org/10.1371/journal.pone.0265092.s001

S2 Fig. PLOS’ questionnaire on inclusivity in global research.

https://doi.org/10.1371/journal.pone.0265092.s002

Acknowledgments

We thank the community health workers interviewed for their support and participation in this study.

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Introduction, conclusions, supplementary data, acknowledgements.

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Community health worker models in South Africa: a qualitative study on policy implementation of the 2018/19 revised framework

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Joshua P Murphy, Aneesa Moolla, Sharon Kgowedi, Constance Mongwenyana, Sithabile Mngadi, Nkosinathi Ngcobo, Jacqui Miot, Denise Evans, Sophie Pascoe, Community health worker models in South Africa: a qualitative study on policy implementation of the 2018/19 revised framework, Health Policy and Planning , Volume 36, Issue 4, May 2021, Pages 384–396, https://doi.org/10.1093/heapol/czaa172

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South Africa has a long history of community health workers (CHWs). It has been a journey that has required balancing constrained resources and competing priorities. CHWs form a bridge between communities and healthcare service provision within health facilities and act as the cornerstone of South Africa’s Ward-Based Primary Healthcare Outreach Teams. This study aimed to document the CHW policy implementation landscape across six provinces in South Africa and explore the reasons for local adaptation of CHW models and to identify potential barriers and facilitators to implementation of the revised framework to help guide and inform future planning. We conducted a qualitative study among a sample of Department of Health Managers at the National, Provincial and District level, healthcare providers, implementing partners [including non-governmental organizations (NGOs) who worked with CHWs] and CHWs themselves. Data were collected between April 2018 and December 2018. We conducted 65 in-depth interviews (IDIs) with healthcare providers, managers and experts familiar with CHW work and nine focus group discussions (FGDs) with 101 CHWs. We present (i) current models of CHW policy implementation across South Africa, (ii) facilitators, (iii) barriers to CHW programme implementation and (iv) respondents’ recommendations on how the CHW programme can be improved. We chronicled the differences in NGO involvement, the common facilitators of purpose and passion in the CHWs’ work and the multitude of barriers and resource limitations CHWs must work under. We found that models of implementation vary greatly and that adaptability is an important aspect of successful implementation under resource constraints. Our findings largely aligned to existing research but included an evaluation of districts/provinces that had not previously been explored together. CHWs continue to promote health and link their communities to healthcare facilities, in spite of lack of permanent employment, limited resources, such as uniforms, and low wages.

South Africa’s community health worker (CHW) programme has been a vital part of healthcare service delivery in South Africa for decades. The programme has existing variation in models of implementation but is guided by a strong national framework since 2011, recently revised in 2018.

Despite the programme’s long history, there are still many challenges to optimal implementation, including limited resources, incomplete staff complements, inconsistent use of data, safety concerns and few pathways for professional development.

South Africa’s National Health Insurance, among other objects, seeks to ensure Universal Health Coverage and optimal implementation of the CHW programme is an important part of that policy and towards improving the quality of primary health care in South Africa.

South Africa has a long history of community health workers (CHWs) dating back as early as the 1930s ( MacKinnon, 2001 ). It has also been a complex journey, balancing constrained resources and competing priorities ( Clarke et al. , 2008 ). The 2004 National Department of Health’s (NDoH) CHW policy allowed for both generalist (care across the spectrum of health needs) and single-disease CHW functionality, focusing only on HIV. e.g. ( Friedman, 2005 ). An increasing burden of HIV and tuberculosis between the 1990s and early 2000s resulted in the proliferation of CHWs being recruited and trained ( Friedman, 2005 ; Schneider et al. , 2016 ). Guided by the primary healthcare approach in Brazil, South Africa’s NDoH has prioritized re-engineering the primary healthcare (PHC) system since 2011 ( National Department of Health of South Africa, 2011 ). CHWs, supported by other health professionals, form a bridge between communities and healthcare service provision within health facilities and act as the cornerstone of the national Ward-Based Primary Healthcare Outreach Teams (WBPHCOT 1 ) programme ( MacKinnon, 2001 ; SA NDoH, 2018a ). From a policy perspective, the model has now long embraced the generalist approach, described as ‘integrated services’ by the NDoH 2011/12 and 2018/19 policies ( Jinabhai et al. , 2015 ).

There is ample evidence to show that CHWs can help in improving attitudes towards family planning, increased breastfeeding and immunization of children under five years, as well as tracing of patients on ART and other aspects of healthcare provision, particularly among those in rural and underserved areas ( Geng et al. , 2016 ; Naidoo et al. , 2018 ). Under the current Policy Framework and Strategy for WBPHCOT 2018/19–2023/24, CHWs have a broad scope of work that supports various health programmes including: (i) health promotion and illness prevention; (ii) registering health needs at the household level; (iii) providing psychosocial support; (iv) management of minor health issues; (v) coordination with other health providers; (vi) providing adherence support and counselling for chronic conditions; and (vii) tracing of patients who have missed HIV and TB service visits or who need referring back to the clinic ( SA NDoH, 2018b ). Swartz (2013) and Jinabhai et al. (2015) , acknowledge the substantial variability within small pockets of the country and across provinces in CHW service delivery ( Swartz, 2013 ; Jinabhai et al. , 2015 ). To date, ∼70 000 lay health workers (a broader category which CHWs fall within) have been recruited and deployed across communities in South Africa and have helped to address the vast shortfall in human resources for health in South Africa ( Schneider et al. , 2018 ). However, there are still only half the WBPHCOTs needed to cover all 4277 wards across the country ( Schneider et al. , 2018 ).

Because of the various models of implementation that exist across South Africa, the limited documentation of implementation countrywide and the persistent barriers that CHWs face, detailing CHW policy implementation across the different provinces is of critical importance. This is important as it may inform the NDoH about what is working and what is not working within the policy and help inform future revisions and implementation. A rapid appraisal was conducted by Jinabhai et al. (2015) to assess WBPHCOTs; however, their report only focused on the National Health Insurance (NHI) pilot districts ( Jinabhai et al. , 2015 ). This study aimed to document the CHW policy implementation landscape across six provinces in South Africa, to identify potential barriers and facilitators of the current policy to help guide and inform future planning.

Study design and population

We conducted 65 in-depth interviews (IDIs) with a purposively selected sample of Department of Health (DoH) National, Provincial and District level managers, healthcare providers and implementing partners 2 (who worked with CHWs) from a single district in Gauteng, KwaZulu-Natal, Limpopo, Mpumalanga, North West and Western Cape provinces. Eligible districts were those not included in Jinabhai et al. ’s (2015) work and otherwise a convenient sample to collect a variety of urban, peri-urban and rural districts based on existing relationships and familiarity with the study sites/communities. We also conducted nine focus group discussions (FGDs) with CHWs themselves. Figure 1 is a map of where the research took place.

Map of South Africa and six districts/provinces included in the study

IDIs with experts—sample selection

We followed a top-down non-random convenience sampling approach to data collection starting with IDIs with national and provincial experts. These participants then suggested managers and providers at the district level (including implementing partners) who could be approached to participate and they in turn suggested participants at facility level [e.g. including facility managers, data capturers, outreach team leaders (OTLs) and/or CHWs] who would have valuable perspectives to offer (Bhattacherjee, 2012). Table 1 outlines the expected and actual number of respondents at each level and also includes illustrative titles, description of roles and level or areas of oversight. Respondents were eligible to be interviewed if they were employed in a relevant position, had prior experience and/or policy awareness with CHWs, were 18 years of age and older, agreed to participate and provided written informed consent.

Description of interview respondent: types, targets/reached, geographic coverage and description of roles

CHW, COmmunity Health Worker, CCG, Community Care Giver; CCW, Community Care Worker; GP, Gauteng; HAST, HIV/AIDS, STIs and Tuberculosis, KZN, KwaZulu-Natal; NGO, Non-governmental Organisation; OTL, Outreach Team Leader; PHC, Primary Healthcare; NW, North West; WBOT, ward-based outreach team; WBPCHOT, Ward-Based Primary Healthcare Outreach Team; WC, Western Cape.

Largely these roles are being phased out in favour of CHW across the country.

FGD with CHWs—sample selection

Focus group participants were also identified through a process of non-random convenience sampling. District and facility respondents included in the IDIs helped us to identify eligible CHWs and invite them to the FGDs. As planned, we conducted two FGDs per district, one at a high-performing facility and one at a low-performing facility (determined based on district managers subjective experience). Targets and reach of CHW FGDs are in Table 2 . All our FGDs comprised CHWs belonging to at least two different facilities or two different WBPHCOTs. CHWs identifying as home-based caregivers (HBCGs), peer educators, community caregivers (CCGs) in KwaZulu-Natal and community-care workers (CCW) in the Western Cape ( Friedman, 2005 ; Stellenberg et al. , 2015 ) were considered eligible to participate in the FGDs if they were 18 years of age and older, agreed to participate and provided written informed consent.

Description of focus group respondents: targets/reached and languages present

Data collection and instrumentation

Data were collected between April 2018 and December 2018. IDIs were conducted using separate interview guides for (i) provincial and national expert IDIs and (ii) district, facility and CHW IDIs. A further guide was developed to facilitate the FGDs. The guides were developed with input from experts: those in our organization as well as experts from the University of Pretoria and University of the Western Cape. The topics of each guide are summarized in a web annex ( Supplementary Data S1). IDIs were carried out in English, but FGDs were conducted in the local language chosen by the CHWs. All interviews and FGDs were recorded for quality, transcription and translation purposes. The interviewers and note-takers also recorded their interview/FGD notes and reflections for each data collection event. Participants provided written informed consent to confirm that they had been informed about the study and were willing to be recorded. The IDIs lasted 30–60 min and the FGDs between 60 and 120 min. Interviews with national, provincial and select district respondents were conducted over the phone while FGDs and facility interviews were conducted in an office or boardroom at the healthcare facility.

Data management and analysis

All FGDs and all but one IDI were audio-recorded and transcribed, and the single IDI was included in the analysis as ‘expanded notes’ because the respondent declined to be recorded ( Tolley et al. , 2016 ). Interviews were transcribed verbatim while FGDs were simultaneously translated during the transcription process into expanded notes, i.e. not always verbatim, but included direct quotes as judged by the FGD facilitator ( Oliver et al. , 2005 ; Tolley et al. , 2016 ). Transcripts were then imported into NVivo 11© (Doncaster, Australia), coded line by line and analysed using a content analysis approach ( Richards, 2014 ).

We considered theoretical frameworks ( Damschroder et al. , 2009 ; Naimoli et al. , 2014 ) as well as results from other South African reports and sections from the policy document to guide the creation of our codebook and analysis ( Jinabhai et al. , 2015 ; SA NDoH, 2018a ). The deductive portion was guided by the most recent comprehensive reviews of WBPHCOTs ( Jinabhai et al. , 2015 ) and the policy itself ( SA NDoH, 2018b ), which led to the creation of codes (e.g. policy, services, implementation, training and management; codebook: Supplementary Data S2). Additional codes were added as themes emerged (as per the inductive process). To minimize researcher bias, we coded the first transcript as a group of five, thereafter two researchers coded least two additional transcripts each and inter-coder agreement was assessed using a Kappa coefficient. Coding was refined until agreement among coders reached good correlation (>0.5).

We present sample characteristics of IDI and FGD respondents and then our results within four primary areas: (i) current models of CHW policy implementation across South Africa; (ii) facilitators to CHW programme implementation; (iii) barriers to CHW programme implementation; and (iv) recommendations. Again, we split the facilitators and barriers into those that influenced policy implementation and those that directly influenced CHWs.

Sample characteristics

We conducted IDIs with 65 stakeholders ( Table 1 ). Of those interviewed, 82% were female. The median years in the position was 4.5 (range: 0.3–27.5) and the median years with their organization was 9.2 (range: 0.3–31.5). The FGD respondents (101 from 9 FGDs) were predominantly female (95%), they had worked a median of 4.7 years (range: 0.7–15.7) as a CHW, their median age was 43 years (range: 24–60 years) and 52% had completed secondary school (grade 12) ( Table 3 ). Similarities and differences in CHW characteristics were observed across different provinces ( Tables 2 and 3 ). Full FGD sample size was not reached in two provinces where only one FGD was conducted; data saturation that occurred within provinces suggests that the impact of only one FGD in those cases on a full data picture was minor.

FGD demographics

Current models of CHW policy implementation and characteristics of CHWs across South Africa

Most national, provincial and district level respondents were aware of the new framework and the details. Most participants discussed the transition from HBCGs, where CHWs were employed by local non-governmental or community-based organizations (NGOs or CBOs), to the DoH. Community-oriented Primary Care (COPC) was described as one approach to implementing the WBPHCOT programme. This approach involves supporting communities holistically and differs from the PHC Re-engineering approach, which focuses more on facility-based outcomes. One district manager described COPC saying that WBPHCOT is the name of the programme and COPC is the methodology you use to implement WBPHCOT. COPC was mentioned as a more resource intensive model of implementation occurring in Gauteng, KwaZulu-Natal and the Western Cape. While some respondents pointed out differences between COPC and PHC Re-engineering, others described them as the same ( Table 4 : Quotes A and B).

Key quotes from all respondent types concerning the key thematic areas

We observed both similarities and differences in implementation across the different provinces. The key elements, including information on NGO involvement, contractual and leadership structures, CHW working structure and working hours, are summarized in Figure 2 and Table 5 .

Structural differences in employment of CHWs and OTLs across six districts

Description of key elements of WBPHCOT policy implementation by district

As reported in our interviews.

Community-based Programmes as a directorate is being phased out.

CBO, community-based organisation; CCG, community care giver; DSD, DoH, Department of Health; Department of Social Development; ENs, enrolled nurses; EPWP, expanded public works programme; HAST, HIV/AIDS, STIs and TB; HH, household; NGO, non-governmental organisation, NPOs, non-profit organizations; PERSAL, Personnel and Salaries management system; PNs, professional nurses; WBOT, Ward-based Outreach Team, WBPCHOT, Ward-Based Primary Healthcare Outreach Team.

For many CHWs that conduct household visits, checking in and out of the facility is standard practice. In Mpumalanga, e.g. CHWs begin their day from 7:00 am to 8:00 am supporting the health talks given by facility staff in the waiting areas before continuing with their required CHW duties. Conversely, some CHWs in North West and Limpopo start in the facility but finish their shift in their communities, while some CHWs in KwaZulu-Natal may only visit their facility once per week. The tools used were consistent across districts with frequent descriptions of (i) household registration form, (ii) individual form for anyone with chronic illness, (iii) maternal and child record, (iv) referral/back referral form, (v) household visit tick sheet, (vi) individual CHW monthly summary and (vii) team monthly summary form. The household visit tick form was sometimes used to plan the week ahead and served as a checklist for the number of household follow-up visits per week. Most teams conducted community work from Mondays to Thursdays with Fridays dedicated to in-service training or compiling and submitting reports. The in-service training was most consistently mentioned in Gauteng and North West province. The teams in KwaZulu-Natal and Western Cape did not mention participating in trainings on Fridays. The number of household visits ranged from two household visits per CHW per day in Gauteng to 10 per CHW per day in Limpopo. Large variations in hours of operation and levels of management were observed across different provinces.

Facilitators to CHW programme implementation

Overall participants in the IDIs and FGDs identified fewer facilitators to WBPHCOT implementation than barriers, but nevertheless facilitators were present.

Facilitators to policy implementation

Consistent health priorities.

Strong consistent messages on health priorities were seen as a key facilitator for CHWs (e.g. in the Western Cape the focus on the ‘first one thousand days’ of children’s lives). Across models of implementation, districts and respondents, the health priorities that CHWs focused on were consistent. According to our respondents, TB, health issues of children under-5-year old, maternal health and HIV/AIDS remain their main health priorities. Social services and support of non-communicable diseases, such as hypertension and diabetes, also form part of the priorities of the WBPHCOT programme. Many CHWs felt that they understood the services they administer and their daily routines; there was an overall sense of clarity in their roles and responsibilities (Quote C).

OTLs are a key facilitator to the implementation of WBPHCOT. Supervision and guidance from OTLs were common and viewed as being hands-on and supportive. Telephone advice and general support was also noted as being a key part of OTL management strategies (Quote D).

Tracing resources and adaptation

Across facilities we noted individualized solutions to facilitate planning and improve tracing of patients who missed a visit for HIV or TB services. When we did encounter office space (it was infrequent), there was evidence that OTLs and CHWs have created hand-drawn maps of the areas where CHWs and WBPHCOT have been assigned. These maps facilitated overall planning.

In KwaZulu-Natal, we observed some novel solutions to the defaulter tracing process: (i) each patient was assigned to a CHW at registration at the facility to establish relationship with the patient to assist with tracing in the future if needed and (ii) each CHW is assigned a pigeon box, or designated area in the facility, where details of patients assigned to the CHW for tracing can be conveniently found.

Facilitators that influence CHWs’ work in the community

Purpose and passion.

A sense of purpose, passion for the work, trust from the community and a feeling that as CHWs, they were making a difference were common facilitators reported across respondents (Quote E).

Close proximity to the community

CHWs reported their deep knowledge of their client’s culture (most were from the communities they serve) as a key facilitator in being able to implement their work. CHWs reported that this enhances CHW–client communication and cooperation, helps build awareness of the services that CHWs offer and also fosters trust among the communities that CHWs are serving (Quotes F and G). Similarly, some provincial representatives indicated that when CHWs engaged with the community, then their tracing was more effective (Quote H).

Participants also mentioned ‘Health Posts’. A ‘Health Post’ is usually a physical office outside of the facility but within the community. Although evidence about these was limited, the respondents indicated that proximity to the community was an advantage in delivering CHW services and provided an opportunity to deliver outreach work more effectively.

Facility integration and recognition

A strong and supportive relationship with facility management, through knowledge and integration of community-based care and facility-based clinical services, was reported as an indication to success in CHWs’ work (Quote I).

Barriers to CHW programme implementation

Critical barriers emerged frequently across all participant responses. Below we report challenges around: awareness of the new policy, deficits on staff complement and coverage, concerns around OTL and integration with the facility, inadequate wage, resources, data collection/use and tracing challenges.

Barriers to policy implementation

Clarity on elements of the policy framework.

Largely, respondents seemed to have a clear understanding of the points included in the framework and what should be implemented; however, this was less apparent at the facility and community level. Some respondents did raise issues of clarity in the framework, e.g. in relation to the required qualifications of CHWs (Quote J).

Limitations of staff complement

One of the more common challenges mentioned was allocation of a full staff complement in terms of coverage of all wards and ensuring that there are sufficient CHWs to cover each ward (Quote K). There was little evidence to show that CHWs were allocated appropriately with consideration of the size of the catchment area. As an example, in rural Mpumalanga, one OTL described that she had a catchment area of >10 000 individuals that was served by five CHWs (the policy states each WBPHCOT of between 6 and 10 CHWs should serve ∼6000 individuals). We did encounter reports that resources are directed towards those areas of greatest need, guided by socio-economic status and other social determinants of health.

Limited OTLs

While a key facilitator to implementation of WBPHCOT are OTLs themselves, we found that OTL availability, regardless of qualification (professional nurse or enrolled nurse 3 ), was a problem countrywide, but most acute in Limpopo where OTLs were most limited and were often facility-based professional nurses who served as OTLs as secondary roles (Quote L).

The limitations of OTLs were a major concern across respondents. The preference for the qualification of the OTL varied across provinces. Some believed it could be either an enrolled or professional nurse whereas others felt it could only be a professional nurse (Quote M). Quote M from a district manager in Mpumalanga describes a difficult ‘Catch-22’ situation where there is a shortage of profession nurse and her belief that enrolled nurses are not adequately suited for the role. It was only Gauteng that had a presence of enrolled nurses serving as OTLs and did not mention a shortage of this cadre of staff.

Wage, professional development and limited resources

There was consistent disappointment with the low wage, lack of permanent employment and limited opportunities for professional development. We also asked the CHWs and OTLs if they are provided with required and necessary equipment and supplies, such as sphygmomanometers, educational tools, first-aid kits (dressings, paracetamol, etc.), masks, uniforms, name tags and stationary. None of the CHWs or OTLs interviewed reported that they had all the equipment they needed. Stationery was often in short supply with CHWs often having to use their own money to make copies of necessary forms or buy their own stationery (Quote N). Essential equipment like TB masks was in many cases not provided, putting the CHWs at the risk of infection while interacting with their TB patients.

The most common missing resource was uniforms (Quote P), which participants indicated were key to their work, especially in terms of being trusted and taken seriously (Quote Q).

Barriers that influence CHWs’ work in the facility

Limited respect.

Many CHWs do not always feel respected and integrated into the facility (Quote R) and their job specifications are misunderstood by other staff members. At worst there is mistrust between facility staff and the CHWs with lower lay cadre staff members feeling as though CHWs are being used to replace them.

Conflicting roles and remuneration

The presence of an NGO was sometimes a barrier to CHWs working with facility staff as this created confusion about work roles, while at other times a lack of communication between CHWs and the facility was a symptom of a system transitioning from NGO supervised to DoH/facility supervised. Community-based organization or NGOs who have historically managed and employed CHWs have since been dissolved in many areas to know managed by the DoH, except in the cases of Limpopo and the Western Cape (Quote S).

During our data collection there were announcements from South African government of a move to implement a minimum wage package for CHWs, and while in some districts this has now been initiated, there still remain many districts where this has not been implemented.

High burden of data collection and reporting

Data collection was described by participants as being time-consuming and information use was challenging due to resource limitations. Completing paperwork and the daily, weekly and monthly reporting that was frequently required was often described as burdensome and onerous and was on occasions even resented by patients. We collected reports that some patients would refuse to sign the forms because they were asked on every visit and did not see the benefit. The process of household registration was also reported to be time-consuming because forms are often not captured electronically or already collected information will often be missing and the process then has to be repeated (Quote T).

Challenges with tracing and record-keeping

An issue closely related to data management is tracing. This was highlighted by patient lists that are given to CHWs to trace those who are defaulting on chronic treatment or who need follow-ups for TB, pregnancy, immunizations, etc. The size of these lists per facility could vary greatly from just five up 500–800 individuals over a given month, while individual CHW house-visit lists could be as small as 2 and as large as 20 in the course of a week. Reported time to trace and follow up all of those on the list could be 2–3 h of walking in a day and between 2 and 3 weeks to trace everybody.

Success of tracing varied widely, from not finding any on the list to being able to successfully trace 9 out of 10 patients. The primary reason for low success was wrong addresses and phone numbers (S4: Quote U). This was also compounded by the fact that lists were often photocopied or hand-written making them difficult to read. The exceptions were in the Western Cape where tracing lists were emailed and even sent via WhatsApp. Client names also often reappear on these lists, even though there was a history of previous unsuccessful tracing attempts, or the patient had been confirmed as deceased and this would had been previously documented. Where CHWs self-selected the names of the patients that they were visiting from the lists, it was found that this also could result in duplication of effort, by the same CHW. More concerning though was the issue raised in one district where it seemed that CHWs did not even have a list of those who should be visited (Quote V) and just haphazardly visited households. The concept of ‘silent transfers’ where patients on antiretroviral therapy switch facilities without informing their originating facility nor their receiving facility was also frequently described and presented another challenge to tracing.

Concerns over safety and security

Safety and security remain a major concern among CHWs while they are out on the field tracing. As shown in Table 5 , CHWs from Gauteng always went out in pairs because of safety concerns while the practice varied between working alone or in pairs in other districts. It was a concern everywhere, but most prominently noted in Gauteng and Western Cape.

Recommendations for improving implementation of WBPHCOT policy

Respondents offered a number of helpful suggestions on improving the current CHW programme implementation. The importance of permanent employment, a living wage and uniforms was discussed at almost all of the FGD sessions. These were indicated to be critical factors ensuring the livelihoods and well-being of CHWs.

Across all provinces, respondents noted that, even though training was received, more training was still needed (such as counselling generally, testing blood pressure and supporting diabetes). The issue of no certification for their trainings was also a recommendation for future trainings. A desire for being up-skilled through more training and further qualifications was also commonly highlighted as a recommendation (Quote X).

During data collection, we encountered reports of mobile health pilot interventions being implemented to ease the burden of data collection and programme management of the CHW programme in Gauteng, Mpumalanga and North West. Largely, this was well received and most respondents supported the introduction of mobile technology. However, this needed careful consideration and implementation as early indications in provinces where these systems have been piloted or used showed that the systems did not always provide helpful reporting nor did they have adequate management support. Although most supported it, others recommended against use of mobile tools for fear the devices may be stolen.

Other noteworthy considerations included emphasizing the importance of better integrating CHWs into the current PHC system (S4: Quote Y). Also, the potential use of community indicators (such as knowing one’s own HIV status) to assess CHW impact (S4: Quote Z) on progress towards UNAIDS 90-90-90 HIV targets. 4

We gathered a wide range of perspectives on models of the implementation of CHW policy in South Africa. We identified two major categories of CHW policy implementation support: (i) implementation supported by NGOs as seen in the provinces of Limpopo, Mpumalanga and the Western Cape and (ii) implementation managed by the DoH implemented as in the provinces of Gauteng, KwaZulu-Natal and the North West. Western Cape and KwaZulu-Natal also have additional levels of non-clinical leadership (experienced CHWs promoted to support administrative and supervisory duties), to manage CHW activities. Hours of operation vary substantially and a few districts require ‘clock-in’ processes where CHWs are required to report to facilities. Other districts have ‘Health Posts’ or arrangements where CHWs can start their workdays directly from their communities, not always requiring a daily facility visit. ‘Health Posts’ described elsewhere consist of 3–6 rooms in temporary structures, often without water or electricity, and providing medication and minor treatments ( Nxumalo, 2014 ; Tseng et al. , 2019 ).

Key facilitators to implementation of the CHW policy included having effective OTLs in place, as well as individualized solutions to facility planning to improve CHW integration and tracing success. This included ensuring patients are allocated to specific CHWs prior to a missed visit to ensure effective tracing. CHWs’ ties and relationship with their community, their sense that they were making a difference and the trust of the communities were all seen as factors that facilitated successful implementation.

There were a number of barriers highlighted which threatened the success of these programmes, which were often centred on limitations. Insufficient numbers of CHWs, OTLs, equipment and supplies were frequently reported as a major challenge, as well as reports of a lack of respect and recognition from some in the community and from facility staff. Issues of a low wage, absence of a uniform, burdensome paper work, permanent employment and a lack of opportunity for professional growth were consistently highlighted by all CHWs with whom we engaged.

These findings largely align with the existing body of knowledge on the topic of CHW programme policy implementation: that leadership is in great demand ( Schneider and Nxumalo, 2017b ); that the policy is largely understood and followed, but that resources are constrained ( Jinabhai et al. , 2015 ). Also, aspects of implementation remain complex and challenged by limited availability of resources such as uniforms, equipment and stationery ( Schneider et al. , 2018 ; Clarke et al. , 2008 ). As Jinabhai et al. (2015) had found, and also clear from this research, that WBPHCOTs are allocated to the areas of greatest need, based on social determinants of health (e.g. poverty, unemployment, violence and addiction) ( Jinabhai et al. , 2015 ). We also observed shortcomings of the existing paper-based data system as noted by Jinabhai et al. (2015) and observed a clear absence in the available use of available data for planning and implementation at all levels across the health system.

From our observations we believe that the implementation of the CHW policy must be adaptable and appropriate for the context in which it is implemented to achieve the objectives of PHC Re-engineering and support the implementation and rollout of universal health coverage 5 in South Africa. ( Stevenson, 2019 ). This assertion deviates slightly from the conclusions of Jinabhai et al. (2015) who call for one national centralized authority ( Jinabhai et al. , 2015 ), but perhaps reflects programme maturity and the need for provincial autonomy noted by Schneider et al. as implementation continues ( Schneider and Nxumalo, 2017b ).

Our findings support that supervision and leadership of CHWs is critical to the effective implementation of ward-based PHC outreach teams. A report led by Genesis (2019) recently provided a comprehensive evaluation that found similar findings to ours: an insufficient CHWs and insufficient OTLs ( Genesis, 2019 ). Jinabhai et al. (2015) suggested that ‘Team leaders could be drawn from nursing and CHW cadres with sufficient qualifications, without appointing professional nurses who are in short supply and are the back bone of clinical care at facilities’—a strategy that we saw had been piloted and seems to have been successful in KwaZulu-Natal and the Western Cape. Conversely, Tseng et al. (2019) also explore the issue of supervision and emphasize the importance of the Professional Nurse cadre over a less senior, Enrolled Nurse ( Rispel, 2015 ; Tseng et al. , 2019 ).

A major challenge to the implementation of CHW policy was between full coverage and supporting those at most need. One of the major policy priorities is to ‘improve access to healthcare for poor and vulnerable communities in priority settings like the rural areas’ ( SA NDoH, 2018a ). The need for full coverage of CHWs across South Africa while ensuring the quality of that coverage and suitability of different implementation models in urban and rural settings presents a significant challenge. Focusing on optimal implementation in the subset of wards that are most in need, or potentially restricting the programme to rural rather than urban areas, might be considered as an interim solution while further resources are identified for complete quality coverage ( Naidoo et al. , 2018 ). Wahl et al. (2019) , conversely, suggest that urban settings should not be excluded from CHWs’ services ( Wahl et al. , 2019 ).

A mobile health (mHealth) solution seems long overdue, considering the data gaps ( Genesis, 2019 ), and the relative willingness of our respondents as well as the potential to address tracing challenges. A national policy document ( Chowles, 2015 ) calls for a holistic approach to mHealth to ensure government leadership and stakeholder involvement and there are many existing projects from which to draw ( Strydom, 2017 ; Venter et al. , 2019 ).

A difficult but important issue to mention is safety. We collected the evidence of physical violence targeted towards some CHWs. This can be as severe as sexual violence, which has been reported in the popular South African media in the course of 2019 ( Selepe, 2019 ). The overwhelming majority of CHWs in our sample (and in South Africa) are women—which might explain why CHWs’ safety while performing their duties was frequently raised as a challenge; the paucity of safety control measures for CHWs, besides travelling in groups, remains a concern. We collected no other safety procedures besides working in groups. In a different vein of safety, CHWs are currently being asked to serve as some of the primary screenings for the emerging COVID-19 global pandemic ( van Dyk, 2020 ). With the consideration of their limited resources, including masks, this is an issue that requires urgent attention.

There are a number of strengths to the research presented here, namely: (i) presentation of findings from districts other than the National Health Insurance pilot districts ( Jinabhai et al. , 2015 ); (ii) the inclusion of both rural and urban districts as opposed to many CHW studies ( van Rensburg et al. , 2008 ; Schneider and Nxumalo, 2017a ; Naidoo et al. , 2018 ); and (iii) inclusion of a wide range of stakeholders from the national leadership to CHWs themselves.

Our major limitations were the routine forms of bias in qualitative research, namely qualitative research cannot be wholly generalizable to the country or even our selected provinces. We also recognize social desirability bias from respondents, selection bias in terms of our non-random selection and researcher bias (in the form of confirmation bias and also contamination from knowledge of the existing CHW research). Respondent bias was mitigated through an open-ended and non-leading interview guide and training prior to data collection. Our selection bias was balanced against our strength of having a large sample allowing viewpoints from across South Africa. We were unable to reach full FGD sample size because of time constraints and difficulty scheduling with a CHWs. Potential research bias was balanced through assessment of inter-coder reliability and review of interpretations during the write-up process. With our large sample size, we achieved saturation on most of our reported areas, but in other areas, such as reports of staff complement across wards, we did not achieve full saturation. We did not explore quality controls measures in depth and we were also unable to align the characteristics we collected to an objective measure of programme success, thereby highlighting opportunities for future work in this arena.

This research is unique in that it presents a detailed landscape of CHW policy implementation across several South African provinces. The passion, commitment and a feeling among CHWs that they can make a difference within the communities they serve is a key driver in ensuring the success of this programme. Although the CHW policy is widely recognized and understood, there are a number of challenges to implementation that still exist. The degree of collaboration between facility-based staff can be a facilitator or a barrier to implementation; this relationship can also be moderated by the presence of an involved OTL. We believe that it will be important to ensure that CHWs are given the visibility and recognition they seek through permanent employment, uniform, and a higher wage; also, that vacant OTL roles are filled as a priority with appropriate staff cadres. Mobile health solutions remain a priority to help CHWs effectively plan their work and to ensure that efforts are not wasted trying to support patients who are known to no longer be within the communities that CHWs support.

There are opportunities for learning across the existing models of CHW in South Africa. Implementation of other policies or strategies that might overlap or contradict the priorities of this policy needs to be introduced with care. Further research that builds on the information collected here and explores the preferences of CHWs and their managers for different attributes of CHW implementation (e.g. including leadership cadre, performance based-motivations, scope of work) using a discrete choice experiment or similar stated preferences design is warranted to further determine the focus to strengthen the implementation of this policy.

Supplementary data are available at Health Policy and Planning online.

Generally, we refer to WBPHCOT Policy Implementation as ‘CHW Policy Implementation’.

In this context, an implementing partner is a PEPFAR-funded organization who at the time of the study was mandated to provide technical support (such as training and mentoring) to support the implementation of CHW activities.

Rispel (2015) clarifies that a professional nurse requires 4 years of training and can specialize in midwifery, while an enrolled nurse requires only 2 years. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4430691/ .

UNAIDS (2015) 90-90-90: treatment for all https://www.unaids.org/en/resources/909090 .

Referred to as National Health Insurance in South Africa.

Currently CHWs work under community-based services.

We thank all the CHWs, healthcare providers, data staff and other experts involved with the research directly or indirectly; community-based organizations and development partners; South African Department of Health at the National, Provincial and District levels; and the Research Team—Lezanie Coetzee, Kelebogile Kgokong and Daniel Letswalo. We also thank Noluthando Ndlovu from Health Systems Trust for help with mapping. We dedicate this work to Professor David Sanders who passed away on 31 August 2019, a champion of PHC and advocate for health as a human right as well as all healthcare workers facing the COVID-19 response in 2020.

Authors’ contributions

J.P.M., S.P. and D.E. conceptualized the study. J.P.M. oversaw data analysis, prepared the draft manuscript and managed subsequent revisions. J.P.M., S.P. and D.E. oversaw implementation of the study and all data collection. S.K., N.N., C.M., S.M. and A.M. analysed the IDIs and FGDs and contributed to writing the manuscript. J.M. provided substantive feedback on several iterations of the article.

This work has been made possible by the generous support of the American People and the President’s Emergency Plan for AIDS Relief (PEPFAR) through USAID under the terms of Cooperative Agreements AID-674-A-12-00029 and 72067419CA00004 to HE 2 RO. The contents are the responsibility of the authors and do not necessarily reflect the views of PEPFAR, USAID or the United States Government.

Conflict of interest statement. The authors declare no conflicts of interest.

Ethical approval. Ethical approval for the study was granted from the Human Research Ethics (Medical) Committee of the authors’ institute. Data collectors were trained in qualitative interviewing techniques, good clinical practice, research ethics and study procedures. Respondents were not compensated for their time; however, CHWs participating in FGDs were reimbursed for any travel costs and provided with lunch.

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• community health workers
• primary health care
• south africa
• qualitative research

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Why do community health workers volunteer? A qualitative study in Kenya

Affiliation.

• 1 School of Health and Related Research, University of Sheffield, Regent Court, 30 Regent Street, Sheffield S1 4DA, UK.
• PMID: 23036777
• DOI: 10.1016/j.puhe.2012.06.005

Objectives: Globally, there is a dire shortage of healthcare workers, but the situation is particularly bad in low- and middle-income countries. To address this, task shifting of clinical work to lower-level staff, including volunteer health workers, has been used. Whilst there are examples worldwide of such an approach working, the sustainability of programmes based on a volunteer workforce is less certain. In addition, little is known about the factors that motivate such volunteers. This study sought to ascertain these motivational drivers.

Study design: Qualitative study using focus group discussions.

Methods: Qualitative study of volunteer community health workers (CHWs) in a rural district of Western Kenya. Twenty-three CHWs were sampled purposively, and took part in six focus group discussions. Thematic analysis was performed on the transcribed discussions.

Results: A variety of factors were identified as important drivers of motivation. These included financial as well as non-financial drivers, such as personal recognition, personal development and working conditions.

Conclusions: There are serious unanswered questions regarding the viability of healthcare programmes founded on a workforce reliant on volunteer CHWs. This study revealed the importance of some form of reward, be it financial or otherwise, in order to retain and maintain the engagement and motivation of volunteer CHWs in these settings.

Copyright © 2012 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.

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• Research Support, Non-U.S. Gov't
• Community Health Workers / psychology*
• Community Health Workers / statistics & numerical data
• Focus Groups
• Middle Aged
• Motivation*
• Qualitative Research
• Rural Population / statistics & numerical data
• Socioeconomic Factors
• Volunteers / psychology*
• Volunteers / statistics & numerical data

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• Volume 14, Issue 5
• Exploring opportunities to strengthen rural tuberculosis health service delivery: a qualitative study with health workers in Tibet autonomous region, China
• Article Text
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• http://orcid.org/0000-0002-8674-4099 Victoria Haldane 1 ,
• Zhitong Zhang 1 ,
• Tingting Yin 2 ,
• Bei Zhang 3 ,
• Yinlong Li 4 ,
• Qiuyu Pan 5 ,
• http://orcid.org/0000-0002-2906-8813 Katie N Dainty 1 ,
• Elizabeth Rea 1 , 6 ,
• Pande Pasang 7 ,
• Jun Hu 7 , 8 ,
• http://orcid.org/0000-0002-3076-2650 Xiaolin Wei 1
• 1 Dalla Lana School of Public Health , University of Toronto , Toronto , Ontario , Canada
• 2 Liangcheng No 3 Municipal Hospital , Liaocheng , Shandong , China
• 3 Weifang Medical College , Weifang , Shandong , China
• 4 Jining Medical University , Jining , Shandong , China
• 5 North Sichuan Medical College , Nanchong , Sichuan , China
• 6 Toronto Public Health , Toronto , Ontario , Canada
• 7 Shigatse Centre for Disease Control and Prevention , Shigatse , Samzhubze , China
• 8 Shandong University of Traditional Chinese Medicine , Jinan , Shandong , China
• Correspondence to Dr Xiaolin Wei; xiaolin.wei{at}utoronto.ca

Objectives This qualitative study aimed to explore opportunities to strengthen tuberculosis (TB) health service delivery from the perspectives of health workers providing TB care in Shigatse prefecture of Tibet Autonomous Region, China.

Design Qualitative research, semi-structured in-depth interviews.

Setting The TB care ecosystem in Shigatse, including primary and community care.

Participants Participants: 37 semi-structured interviews were conducted with village doctors (14), township doctors and nurses (14), county hospital doctors (7) and Shigatse Centre for Disease Control staff (2).

Results The three main themes reported include (1) the importance of training primary and community health workers to identify people with symptoms of TB, ensure TB is diagnosed and link people with TB to further care; (2) the need to engage community health workers to ensure retention in care and adherence to TB medications; and (3) the opportunity for innovative technologies to support coordinated care, retention in care and adherence to medication in Shigatse.

Conclusions The quality of TB care could be improved across the care cascade in Tibet and other high-burden, remote settings by strengthening primary care through ongoing training, greater support and inclusion of community health workers and by leveraging technology to create a circle of care. Future formative and implementation research should include the perspectives of health workers at all levels to improve care organisation and delivery.

• Tuberculosis
• Public health
• Quality in health care

Data availability statement

Data are available upon reasonable request. De-identified and partially redacted data that support the findings of this study are available on request from the corresponding author XW. The data are not publicly available nor available in full due to them containing information that could compromise research participant privacy/consent.

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/bmjopen-2023-079062

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Strengths and limitations of this study

Through semi-structured in-depth interviews conducted in Tibetan and Mandarin languages, this study contributes to the limited body of knowledge on the perspective of health workers, in particular village doctors, in Shigatse, Tibet.

Framing the results through the lens of the tuberculosis cascade of care contextualises health worker perspectives and frames the opportunities they identify.

Desirability is a potential limitation as participants may have more positively framed their experiences.

The study may not reflect all perspectives given recruitment constraints in the setting due to heavy workloads and vast travel distances in the region.

Introduction

Providing high-quality and accessible tuberculosis (TB) care remains a major challenge for health systems globally. Estimates from 2020 suggest that of the over 1.3 million deaths from TB, approximately 469 000 were due to poor quality TB care. Further 467 047 deaths were due to people with TB not being able to use health services. 1 Gaps in high-quality and accessible care exist across the care cascade, that is, from diagnosis to treatment to retention in care and beyond. 2 Barriers to care described globally include lengthy and overly complex pathways to accessing health services, a preference for first contact with informal or private providers and insufficient primary care services for retention in TB care. 2 3 These challenges are particularly difficult for resource-constrained and rural health systems to overcome given their limited funding, inadequate infrastructure, and human resource constraints.

Yet, rural and resource-constrained health systems are those most burdened by TB globally. 4 5 China, for example, has both a large rural population (39% of the total population live in rural areas) and the third largest burden of TB globally (8.5% of the global total of people with TB). 4 6 China has devoted significant resources to build capacity in its rural health workforce and optimise its National Tuberculosis Programme. For example, the Healthy China Initiative 2019–2030 includes ‘TB Control Action’, which sets ambitious targets to reduce pulmonary TB prevalence to 55/100,000 nationally. 7 8 Despite these efforts, delivering high-quality and accessible TB care to rural and remote areas remains a persistent challenge. 9 Indeed, while the overall TB prevalence rate in China is estimated to be 442/100 000, TB prevalence in the largely rural Tibet Autonomous Region (hereafter Tibet), is estimated to be nearly twice as high (758/100 000). 10–12

Tibet has unique contextual considerations that affect the implementation and uptake of TB prevention and care services. Importantly, limited human resources, stretched over a vast geography, intensify existing barriers to accessing care. These barriers include travel distance, local beliefs about TB and prohibitive diagnostic costs. 13 The most recent data from the second largest prefecture in the region, Shigatse, reported that in 2016 only 72% (769/1073) of people newly diagnosed with pulmonary TB completed the treatment. Of those who did not complete the treatment, 83% (252/304), were lost to follow-up. 14 While there are significant gaps in TB prevention, care and service delivery across the region, there are also opportunities for improvement. Nascent efforts have been made to embed TB health services closer to communities, both through policy and programmatic initiatives. These aim, in various ways, to improve the quality of TB care in the region by engaging primary and community health workers more closely in person-centred care across the TB care cascade. Yet, little is known about these efforts from the perspective of health workers in the region.

By exploring health workers’ perspectives, including primary and community health workers, this study aims to identify opportunities to strengthen the TB health service delivery in rural Shigatse prefecture, Tibet, China.

This study in Shigatse prefecture adopts a qualitative descriptive approach to explore health workers’ perspectives on providing TB care in the region.

Study setting and health service delivery context

Tibet is divided into prefectures, which are further divided into counties, townships and villages. Shigatse prefecture is situated west of Lhasa, the regional capital of Tibet. The area is characterised by sparse population density, high altitude and rugged terrain, particularly along the mountainous southern border. Tibet has experienced yearly economic growth, ongoing development, increased migration and modernisation, which have led to increasing life expectancy and other health gains across the region, such as reduced maternal mortality. 15 Yet, TB remains an ongoing challenge, with high out-of-pocket expenditure spent by people with TB on tests and travel to health centres, despite government programmes and financial subsidies that offer free TB medications. 13 Recent TB health service delivery reforms aimed to streamline assessment and referral processes through county hospitals, while ensuring ongoing management and support is provided at the most local levels of primary care—township hospitals and community health centres, in partnership with village doctors. Village doctors are community health workers who undergo 3 to 6 months of medical training that equips them to offer basic acute and preventative care services and to follow up on ongoing care in communities. Village doctors are the first line of contact with primary care for rural residents in China and are an important referral pathway to their counterparts in township hospitals and community health centres as part of the primary care ecosystem in Tibet. 16

Conceptual framework

This study employs a framework grounded in the TB cascade of care ( figure 1 ). The TB cascade of care describes a model of TB health services that emphasises ensuring people remain engaged across sequential stages of care, starting with identifying people with TB symptoms so they can be directed onward to receive diagnosis and care and ending in survival after treatment without relapse. 2 17 The TB care cascade has been proposed as a strategy for programmatic monitoring and evaluation, as well as a conceptual tool to identify gaps in care. 18 Based on inductive thematic analysis from our interview findings, we report how this cascade of care is underpinned and can be strengthened in Shigatse by developing and investing in three key areas—primary care, community health workers and innovative technology. Primary care providers in Shigatse are considered township hospital health workers who are responsible for TB management in the prefecture. Community health workers, in this context, are village doctors given both the scope of their duties and their close links with communities. Innovative technologies are conceptualised as those systems, platforms and interventions that use technology or digital health to support health workers in providing TB care or that support people in accessing care. These three factors work together to ensure that people with TB are better able to be retained along the cascade of TB care and achieve positive health outcomes.

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Framework describing key factors for tuberculosis care strengthening across the cascade of care in Shigatse, Tibet.

Selection of participants, data collection and processing

This study was conducted between April 2019 and November 2020. Participants included village doctors, township hospital doctors and nurses, county hospital doctors and Centre for Disease Control (CDC) staff working in Shigatse, Tibet. Participants were invited to the study by the research team conducting an ongoing randomised controlled trial in the region. 19 All participants approached agreed to be interviewed. Recruitment was purposeful and aimed for a balance of job roles, gender, age and location across four counties representing a mix of locations. The study team made efforts to ensure interviews took place in comfortable, private locations suitable to the respondent.

Trained researchers on the study team conducted semi-structured interviews using a pre-designed interview guide covering topics related to TB service delivery, health worker roles and experiences caring for people with TB ( box 1 ). Interviewers included local researchers familiar with the setting and trained in health service research, as well as the trial coordinator who has extensive experience in the research setting. Ethical approval for the study was obtained from the Office of Research Ethics at the University of Toronto (Ref: 36569) and the Ethics Review Committee of the Shigatse Centre for Disease Control and Prevention (Ref: 006). The information and consent form were translated into Chinese or Tibetan via an interpreter and permission to be audio-recorded was collected. We ensured participant confidentiality by removing participant identifiers and assigning identification numbers as well as quoting participants using pseudonyms. Participants were offered the option to refuse any question and to withdraw from the study at any time without repercussion. Research staff conducted semi-structured interviews in Mandarin with simultaneous interpretation to Tibetan at the time of the interview. Research staff transcribed the recordings in full into Chinese and then translated these into English. A bilingual translator checked transcripts against original recordings to ensure accuracy between recordings and transcriptions. More information can be found in our collaborative autoethnography describing the translation process. 20 Data were securely stored as per protocols defined by the University of Toronto Office of Research Ethics including password protection and use of secure drives.

Summary interview guide

To start, could you tell us about yourself and your current position?

How long have you worked in this role?

What are your main responsibilities related to TB service delivery?

Can you tell me about any other members of your team? Who do you work with to provide TB services?

Can you tell me about your patient mix?

Can you tell me about the first consultation with TB patients?

During the first consultation, what things do you explain to the patient?

During the first consultation, what are patients most concerned about?

What can be done to address their concerns during the consultation?

Can you tell me about your experience conducting follow-ups/home visits?

How often do you conduct follow-ups/home visits?

What are the biggest concerns patients talk to you about during follow-ups/home visits?

A qualitative descriptive approach guided our analysis. Qualitative description is a common approach when conducting cross-cultural qualitative health service research as it emphasises literal interpretation of translated narratives and discourages movement into the text to assume meaning. 21 An initial set of five interviews was coded inductively using elements of thematic analysis as described by Braun and Clarke and then organised into a framework given that identified themes were complementary to the TB cascade of care. After which, we applied framework analysis as described by Ritchie and Lewis to subsequent transcripts, while being open to identifying any additional themes. 22 23 Data were organised using QSR NVivo 12 software. Through discussion, codes were organised into thematic groupings. We stopped interviewing when it was decided, through discussion, that no new concepts were being heard in subsequent interviews. 24

Patient and public involvement

A total of 37 semi-structured interviews were conducted with health workers involved in TB service delivery in Shigatse including village doctors, township hospital doctors and nurses, county hospital doctors and CDC staff. The study was conducted in four locations: three counties (Gyantse, 18 people/km 2 ; Sa’gya, 8.5 people/km 2 ; and Tingri, 4.2 people/km 2 ) and one district (Samzhubze, 43 people/ km 2 ). Interviewees were purposively sampled based on location to ensure representation from different settings ( table 1 ).

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Description of Study 2 qualitative interview participant characteristics

We broadly organise our data using our conceptual framework based on the TB cascade of care, emphasising how three key areas of opportunity—primary care, innovative technologies and community health workers (village doctors)—underpin the cascade of care to strengthen the TB health service delivery in Shigatse. Table 2 offers an overview of themes and inductively identified sub-themes in the analysis.

Overview of themes used in the analysis of health worker perspectives

The first theme highlights the importance of training primary and community care workers to support identifying people with TB symptoms, diagnosis and linkage to care. The second theme describes how village health workers must be engaged to ensure people with TB are retained in care and able to adhere to their medications. The third theme explores how innovative technologies can coordinate linkage to and retention in care, as well as medication adherence.

Training primary and community care to identify people with TB symptoms, diagnosis and linkage to care

Primary care (ie, care provided in township hospitals/community health centres in our setting) and community care (ie, care provided by village doctors in our setting) are important to reduce morbidity and mortality from TB in vulnerable populations. 25 Participants described how primary and community health workers play a critical role in identifying people with possible TB infection, ensuring diagnosis and linkage to care. However, participants emphasised that to provide comprehensive TB care requires a primary and community care workforce with the knowledge and resources to both identify TB infection and access the available health services and referral pathways for people with TB.

Some participants highlighted that a lack of provider knowledge on TB and limited orientation on updated referral processes may contribute to missing people with TB symptoms or delays in accurate diagnosis. Participants described how if all primary and community care health workers are trained to identify TB symptoms and know the referral pathways for testing and linkage to care, identifying people with TB symptoms could be strengthened in the region. As one township hospital doctor explained, ‘usually training at the municipal and autonomous regions is only for county-level staff. If possible, the usual training can incorporate the staff at the township level, as some knowledge is not transmitted to the township and village levels’ (P13_Township hospital doctor).

Others emphasised that this training must reach village doctors, as one participant explained, ‘I hope the village doctor can be informed of the basic knowledge about tuberculosis… some patients have tuberculosis, but the village doctor fails to recognise it. They treat it as cold…The basic prevention of tuberculosis was not explained clearly. Some village doctors do not know what tuberculosis is’ (P06_Township hospital nurse). Some participants explained the need for specific topics to be covered, as one participant emphasised that there is a need to ‘increase training on aspects of multidrug resistance of tuberculosis and new diagnosis and treatments’ (P23_County hospital doctor). One participant described how even if some health workers have received updated orientation on TB health service pathways in the region, human resource constraints may pose a challenge unless all staff are adequately oriented on TB care. The participant explained that ‘we can’t have one doctor that has received orientation start to work on other things while letting an unoriented doctor take over the TB management’ (P34_CDC staff).

Participants highlighted how training primary and community care workers on TB and available referral pathways can strengthen ‘passive case finding’, wherein people self-present to care with TB symptoms. However, passive approaches to identifying people with TB may not be enough and participants reflected how ‘active case finding’, where populations are systematically screened for TB, may be better suited to addressing the burden of TB in Shigatse. This process also requires training. One participant emphasised that a more cohesive policy approach to TB screening, diagnosis and management is needed in the region. They explained that ‘the government has to put a strong emphasis on this task (of managing TB), and publish some relevant guidance, and allow for the active screening of the disease, since patients are less motivated to be actively seeking medical attention’ (P13_Township hospital doctor).

Other participants described how people with TB symptoms will often first seek care from informal traditional Tibetan medicine providers before seeking care from formalised providers in township hospitals (either Western or Tibetan doctors) or from village doctors. One participant explained what they perceived to be the motivations for seeking this type of care, reporting that, ‘some have confirmed tuberculosis but still go to the Tibetan doctor for Tibetan medicine, and do not take tuberculosis medication. Elderly patients are more likely to take Tibetan medication because there are many side effects of the (Western) tuberculosis medications’ (T08_ Township hospital doctor).

Engaging community health workers to ensure retention in care and medication adherence

Village doctors have close ties to communities and are an important resource to promote retention in TB care as people with TB undergo lengthy and difficult treatment courses. Several participants described how perceptions of TB and treatment can make adherence and follow-up difficult. One township doctor reflected how ‘some patients condition did not improve after 6 months or 1 year of taking the medication, thus they think the disease is untreatable, so they don’t want to take the medication anymore’ (P13_Township hospital doctor). Another county hospital doctor explained that people with TB want faster results, reporting that they ‘want to use an infusion or other relatively faster ways to accomplish rapid treatment’ (P16_County hospital doctor). All participants emphasised that greater education on TB is needed in communities and people with TB need a trusted local health worker to advise them as they go through their course of treatment. Several township and county hospital doctors highlighted that village doctors are instrumental in providing this ongoing and frequent support.

Village doctors themselves reported how they were able to work closely with people with TB to address their concerns. As one village doctor explained, ‘the patients are worried about the economic pressure, as well as the overwhelming psychological stress (of diagnosis)…I patiently explain and solve their concerns and guide the patient through the steps with scientific facts and methods’ (P31_Village doctor). All village doctors described how they counsel people not only on medication adherence but also on overall lifestyle habits to help them during treatment. As one village doctor reported ‘when I saw tuberculosis patients for the first time I was worried that they would forget to take their medication…I reinforce healthy eating habit, reinforce sanitation habit, take medication on time’ (P21_Village doctor). Another underscored that their proximity and community rapport make in-person visits convenient. They described how ‘the distance for us to reach the patient’s home is quite close, it is only a 5 min walk…At the family’s home, the patient and family members are quite welcoming to us’ (P08_Village doctor). Village doctors also have frequent contact with communities for ongoing health needs such as prenatal care and routine immunizations, which presents an opportunity for TB education tailored to local needs. One participant shared how village doctors play an important role in dispelling misinformation about TB. They shared that ‘the most important thing is public education, publicising the main purpose and side effects of free tuberculosis medications, and to allow everyone to realise that tuberculosis can be cured and eliminate the misunderstanding that everyone has: that free medications are ineffective’ (P15_Village doctor).

Other participants emphasised that village doctors must be provided appropriate protection and compensation to safely carry out their duties. One participant explained how village doctors need personal protective equipment to safely carry out their duties as currently ‘workers lack protective materials and village-level doctors cannot buy protective materials’ (P19_County hospital doctor). Another explained how village doctors could be supported financially to undertake TB management, reflecting how ‘the village doctor supervisor could give some labour subsidies to the village doctors, they have little wage, RMB 1000 per month (USD 140), some village doctors are also busy – they also have other part time jobs’ (P11_Township hospital doctor).

Innovative technologies to coordinate linkage to care, retention and medication adherence

Participants reflected on how inadequate information management systems and processes negatively affect their ability to provide high-quality TB care in the region. One participant reflected on the burden of TB in the prefecture saying, ‘this is a severe tuberculosis affected area, the population is large, and many patients are positive. There are two people (working) in (tuberculosis) management…It is difficult to track patients, 40–50% of patients are out of town long-term, and it is difficult to manage. (Patient) tracking needs improvement… tuberculosis is hard to manage’ (P22_CDC Staff). Many health facilities rely on paper records, resulting in inconsistent and non-transferrable TB reporting across the region. For those that do use electronic records within their health facility, facility-specific electronic records use a different system than the national Tuberculosis Information Management System (TBIMS) used for reporting and registering people with TB. Indeed, one participant reflected on how differing systems can undermine health workers’ ability to effectively manage health data, explaining that ‘(recording) TB patients uses another reporting system, so maybe the doctors are a little short-handed and confused when it comes to TB patient management’ (P22_CDC Staff).

Participants also reflected on challenges tracking medication adherence, a core pillar of TB care. Participants reported being unable to verify adherence based on self-reporting alone. One participant summarised these difficulties by saying, ‘I didn’t know if they were taking their medications or not, the computers didn’t show anything, it could only be recorded in the book. If they lied, I would not know. Whether or not the medication was taken, I would not know. I made the telephone call (to the patient) and my supervisor can only check whether or not I made the phone call’ (P01_Township hospital nurse). Several participants reflected positively on the opportunity to strengthen adherence monitoring by using electronic medication adherence monitoring technologies (e-monitoring). One township hospital doctor related the benefits of e-monitoring towards the overall strengthening of TB care provided to people in the region explaining, ‘(by having electronic monitoring) in addition to knowing the actual situation of patients’ medication history, you can also know which aspects of disease control need to be strengthened’ (P13_Township hospital doctor). However, these systems must be user-friendly, and staff must be trained on their use to ensure all health workers, including village doctors, can effectively use the technology.

This qualitative study explored health workers’ perspectives on TB care in rural Shigatse, Tibet, China. Through this exploration, we highlight how three interrelated factors—primary care, community health workers and innovative technologies—present important opportunities to strengthen TB health service delivery across the cascade of care in the region.

First, our study emphasises that strengthened primary care is critical to ensuring high-quality TB care in Shigatse. China’s rural health system has had a primary care focus since the 1960s, yet training as well as ‘knowledge to practice’ gaps in TB care at the local level persist. 26–28 The quality of the initial diagnosis and management of TB has been identified as a particularly poorly understood part of the care cascade globally, and this is no different in Shigatse. 29 Without trained health workers at the first point of care, the quality of TB care across the care cascade will inevitably suffer. A shared aspect of primary care strengthening and TB quality of care improvement is investment in ongoing training and skills development of the health workforce, particularly in regard to identifying and managing TB. 30 Our study underscores that it cannot be assumed that primary care providers in high prevalence rural settings, in China or elsewhere, have been trained on TB risk factors, presentation, diagnosis, clinical care or referral processes—all necessary aspects of training for TB care providers. Studies elsewhere in China have explored primary and community care providers’ awareness of TB and found several training gaps. 31 There have been ongoing efforts in resource-constrained settings to improve training on TB and make it more accessible for rural primary care providers in China. Some have proposed innovative training methods, such as offering e-training TB modules for village doctors over the popular Chinese mobile phone application WeChat. However, studies using WeChat for TB training have shown only modest improvement in TB management knowledge among rural doctors. 31 Future research should adopt co-design principles and take a holistic approach to better develop and deliver applicable and user-friendly training.

Second, our findings underscore the important role of community health workers in providing high-quality TB care. 32 33 Treatment for TB is lengthy, challenging and complex for people with TB and their families to navigate. Village doctors in our setting provide a regular and familiar touch point for people during their treatment. Many TB programmes globally offer this type of support as a core feature of directly observed therapy, particularly in high-burden settings. 34–36 Based on guidelines in China, regular follow-up should be provided by township hospital staff and village doctors. However, in our setting, township hospital staff faced tremendous challenges in conducting visits due to the harsh travel conditions and shortage of trained and available human resources. Village doctors are embedded within these communities and provide not only TB care, but care across the lifecourse for families. This longstanding rapport and deep local knowledge positions them well to identify people with symptoms of TB, address context-specific health beliefs and behaviours, and dispel local rumours or misconceptions about TB and its treatment. Other studies in high-burden settings both in China and elsewhere globally have reported similar findings. 37–39 Some TB programmes have also leveraged community health workers for innovative risk communication and community engagement strategies to create context-specific public health messaging about TB. For example, community health workers in India provide TB education for hard-to-reach groups and effectively augment the cascade of care with greater rates of TB case detection and improved treatment success rates. 34 However, as the role of community health workers evolves and expands, so too must efforts to build capacity in this workforce through training. Indeed, as both our study and others from resource-constrained settings have identified, community health workers must be adequately trained, protected and compensated, as they carry out this work. 37

Finally, our study highlights how, depending on its application and quality, information technology can both hinder and help TB care providers across the cascade of care. Shigatse lacks comprehensive and interoperable information technology platforms that span the health system. Our findings provide an important example of how vertical programmatic improvements at the national level, such as the TBIMS system, can hinder high-quality care when not integrated with local information systems. Studies in other countries with a high burden of TB such as South Africa and Indonesia have also reported the importance of, and current gaps in, interoperable information technology systems to ensure continuity of care and integration of TB care into other programmes. 40–42 Such systems provide an important foundation for receiving and managing data from patient-facing technologies to support people in adhering to their TB medications. Our findings highlight how e-Health modalities could be an important opportunity to create a circle of care around people with TB, their family members and health workers in this setting. Our participants highlighted electronic pillboxes, but other studies have reported the potential of mobile phones, smart phones, apps and videoconferencing technologies in supporting the provision of high-quality TB care. 43–45 However, the current evidence on e-Health interventions to enhance TB care is mixed. 46 47 To be successful, e-Health interventions must be user friendly (both for people with TB and health workers), context-specific and fit into larger efforts to improve the entire cascade of care for people with TB. 48 Particularly in high-burden low-resource settings, equity and accessibility for all people with TB are crucial to e-Health uptake and sustainability. By the same token, digital tools need to be accessible to all levels of the health workforce, including community health workers. Indeed, technology is neither a one-size-fits all panacea nor a replacement for a trained health workforce. Technology is an important tool to support people with TB and TB care providers. To reap its benefits, investment is needed in the development, contextualisation, embedding, monitoring and evaluation of innovative technologies. Efforts to do so are currently underway including contextualised e-monitoring for TB in Shigatse. 49

These three areas—primary care, community health workers and innovative technologies—do not operate in isolation. They are synergistic and together emphasise the need for community-centred efforts to improve TB care in remote and rural settings. Our study highlights that capacity building must begin at the ‘most local’ level of the health system, where people first seek TB care or where they may be screened while seeking care for other conditions. To realise such an approach, future formative and implementation science research must include the voices and perspectives of health workers at all levels of care.

Strengths and limitations

This manuscript is strengthened by the perspectives of health workers providing TB health services in a rural and remote region. A further strength is our use of the TB cascade of care to explore their perspectives and experiences. This study contributes to the limited body of knowledge on the perspective of health workers, in particular village doctors, in Shigatse, Tibet. A particular strength is our administration of semi-structured interviews in the Tibetan language, which enabled village doctors to describe their experiences in greater detail.

A key limitation of the study is desirability bias. Participants may have presented a more positively framed account of their experiences. We attempted to limit the influence of this bias by reassuring participants that the study was not related to their work performance and that all responses would be kept confidential. The impact of this bias was likely minimal as participants were candid in sharing their perspectives. Although we tried to recruit a breadth of health workers, given heavy workloads and vast travel distances, we may be missing the perspectives of some health workers providing TB care in the region.

This qualitative study has identified three key areas that pose opportunities to strengthen TB health service delivery in rural communities in Shigatse, Tibet, China, from the perspectives of health workers who provide TB care at different levels in the region. The quality of TB care could be improved across the care cascade in Shigatse by strengthening primary care through ongoing training on TB, greater support and inclusion of community health workers (village doctors in this setting) and leveraging technology to create a circle of care that supports people with TB and their care providers.

Ethics statements

Patient consent for publication.

Not applicable.

Ethics approval

This study involved human participants and was approved by the ethical review committee of the Office of Research Ethics at the University of Toronto (Ref: 36569) and the Ethics Review Committee of the Shigatse Centre for Disease Control and Prevention (Ref: 006). Participants gave informed consent to participate in the study before taking part.

Acknowledgments

The authors would like to thank the health workers who shared their experiences with us and the research, translation and implementation teams in Shigatse and Toronto for their dedication and efforts.

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Contributors VH, ZZ, XW, JH and PP conceptualized and planned the work. Data was collected by ZZ, TY, BZ, YL and QP. Data analysis was led by VH and ZZ with contributions from all authors (TY, BZ, YL, QP, KND, ER, PP and JH). XW secured funding and is the guarantor of the study. VH led manuscript writing. All authors (VH, ZZ, TY, BZ, YL, QP, KND, ER, XW, PP and JH) contributed to and reviewed the manuscript.

Funding The trial is funded by TB REACH, a special initiative of Stop TB Partnership (grant number N/A).

Competing interests None declared.

Patient and public involvement Patients and/or the public were not involved in the design, conduct, reporting or dissemination plans of this research.

Provenance and peer review Not commissioned; externally peer reviewed.

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This web page provides information and supporting materials for the Community Preventive Services Task Force (CPSTF) recommendation about team-based care to improve blood pressure control. It includes the CPSTF finding and rationale statement and a summary of the evidence that serves as the basis for this recommendation.

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This CDC staff-authored paper evaluated the effectiveness of CHWs in the care of people with diabetes and concluded that interventions involving CHWs showed some improvements in participant knowledge, behavior, and physiological measures and decreased hospital admissions, particularly in minority populations.

Audiences: Health insurers, purchasers, and payers, healthcare providers, public health professionals

Related CDC programs: Division of Diabetes Translation

Road to Health Toolkit

Road to Health Toolkit resources were developed for CHWs and educators working with African-American or Hispanic/Latino populations at risk for type 2 diabetes. Resources include the toolkit and all its components, a training guide and video, and an evaluation guide. Training and technical assistance resources are also available.

Type of Resource: Training

Audiences: Certified educators, CHWs, community-based organizations, NGOs, healthcare providers, public health professionals

Community-based Organizations (CBOs)

This web page contains a collection of toolkits related to diabetes prevention and control.

Do It for them! But for You, Too. (¡Hazlo por ellos! Pero por ti también)

This diabetes fotonovela describes simple ways to prevent or delay type 2 diabetes, especially if a person has a family history of the condition.

Audiences: Certified educators, CHWs, community-based organizations, NGOs, general public, public health professionals

Stories to Reach, Teach, and Heal

Over the ages and across the cultures and continents, stories have served to reach, teach, and speak for people in times of hardship and illness. CDC's Division of Diabetes Translation developed a guide: Stories to Reach, Teach, and Heal: A Guide for Diabetes Health Educators . The stories illustrate how health educators can use storytelling to share wisdom and inspiration.

Audiences: CHWs, general public, healthcare providers, public health professionals

Related CDC programs: Native Diabetes Wellness Program , Division of Diabetes Translation

Eagle Books for Early Readers

The four-volume Eagle Book series was written by Georgia Perez, a veteran community health representative for the Nambe Pueblo. The books convey to Native children healthy ways of living that are rooted in traditional Native values. Additional resources that coordinate with the books are also available on this web page.

Eagle Books for Youth

Books and materials on this web page are follow-ups to the original Eagle Book stories, a series of books for Native American children, youth and others interested in healthy living. The youth materials continue to promote type 2 diabetes prevention and encourage a respect for traditional ways, including physical activity and healthy eating.

Traditional Foods

American Indian and Alaska Native communities across the country are reclaiming traditional foods as part of the global Indigenous food sovereignty movement, which embraces identity, history, and traditional ways and practices to address health. This web page lists resources that community health representatives can use to educate their communities about traditional foods.

Audiences: Certified educators, CHWs, community-based organizations, NGOs, general public, healthcare providers, public health professionals

Diabetes Prevention: Interventions Engaging Community Health Workers

This web page provides information and supporting materials for the Community Preventive Services Task Force recommendation about interventions engaging CHWs to prevent diabetes. It includes the Task Force finding, rationale statement, and summary of the evidence that serves as the basis for this recommendation.

Related CDC programs: The Community Guide , Division of Diabetes Translation

General Resources

Community Health Workers Can Be a Public Health Force for Change in the United States: Three Actions for a New Paradigm

This CDC staff-authored paper discusses how to strengthen the roles of CHWs, enabling them to become collaborative leaders in a healthcare environment dramatically changing from "sickness care" systems to systems that provide comprehensive care for individuals and families and supports community and tribal wellness.

Related CDC programs: Heart Disease and Stroke Prevention

Community Health Workers: Part of the Solution

This CDC staff-authored paper describes how two states, Massachusetts and Minnesota, initiated comprehensive policies to foster far more use of CHWs and, in the case of Minnesota, to make CHW services reimbursable under Medicaid.

Audiences: Community-based organizations, NGOs, health insurers, purchasers, and payers, healthcare providers, public health professionals

Making the Business Case for Prevention Video Series: Community Health Workers Bridge Health Care Gap

Improved quality of care, increased compliance, and reduced costs—these are just a few of the many benefits of including CHWs as part of a comprehensive health care team. This video shows how CHWs help patients , especially those with language or other barriers , navigate complex health care systems.

Type of Resource: Multimedia

Related CDC programs: Division of Nutrition, Physical Activity, and Obesity

Community-Clinical Linkages for the Prevention and Control of Chronic Diseases: A Practitioner's Guide

This guide is a resource for public health practitioners to define and facilitate community-clinical linkages.

Infectious Disease

Using Community Health Workers to Prevent Infectious Diseases in Women

This is a conference summary from the International Conference on Women and Infectious Disease. It discusses the use of CHWs to deliver infectious disease prevention services in the United States.

Related CDC programs: National Center for Emerging and Zoonotic Infectious Diseases

Vaccination Programs: Home Visits to Increase Vaccination Rates

The Community Preventive Services Task Force recommends home visits to increase vaccination rates in children and adults. Home visits may be conducted by vaccination providers (e.g., nurses) or others (e.g., social workers, CHWs). This finding is based on a systematic review of evidence.

Related CDC programs: The Community Guide , Vaccines & Immunizations

Injury Prevention

Use of Child Safety Seats: Distribution and Education Programs

The Community Preventive Services Task Force recommends interventions that use distribution and education programs to increase child safety seat use. Programs may be implemented in hospitals, clinics, or homes and often use community volunteers. This finding is based on a systematic review of evidence.

Related CDC programs: The Community Guide , Motor Vehicle Safety Program

Early Childhood Home Visitation to Prevent Child Maltreatment

The Community Preventive Services Task Force recommends early childhood home visitation programs to reduce child maltreatment among high-risk families. Programs may be implemented by nurses, social workers, paraprofessionals, or community peers. This finding is based on a systematic review of evidence.

Related CDC programs: The Community Guide , Child Abuse and Neglect, Division of Violence Prevention

Obesity Prevention and Control: Technology-Supported Multicomponent Coaching or Counseling Interventions to Reduce Weight

The Community Preventive Services Task Force recommends multicomponent coaching or counseling interventions that use technology to help clients lose weight. Interventions are delivered by health professionals, including coaches and counselors. This finding is based on a systematic review of evidence.

Related CDC programs: The Community Guide , Overweight and Obesity

Obesity Prevention and Control: Technology-Supported Multicomponent Coaching or Counseling Interventions to Maintain Weight Loss

The Community Preventive Services Task Force recommends multicomponent coaching or counseling interventions that use technology to help clients maintain weight loss. Interventions are delivered by health professionals, including coaches and counselors. This finding is based on a systematic review of evidence.

Physical Activity

Familias Sanas y Activas: Improving Health among Latinos in San Diego

Based on recommendations from the Community Preventive Services Task Force, the San Diego Prevention Research Center is improving the health of Latinos in the city with a free physical activity program that includes training promotores de salud to lead group exercise classes.

Related CDC programs: The Community Guide , Physical Activity

Chronic Disease

Prevalence, costs, risks, prevention, and management of chronic diseases in the United States

For Everyone

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UWPHI Immersions Presents: The Role of Community Health Workers (CHWs) in Public Health Transformation and the 10 Narrative Principles of Difficult Conversations in Public Health on June 11 from 1:30-4pm CT

Please  register and save the date  for our next virtual Public Health Infrastructure Grant (PHIG) Immersion on Tuesday, June 11th 1:30pm – 4 pm CT.

The first part of the Immersion will introduce community health workers (CHWs) and offer perspectives of what it is like to be a community health worker from two guests. CHWs are a fundamental part of Wisconsin’s public health and health care workforces and systems. Join us as we learn more about CHWs, the roles CHWs play in Wisconsin, and how CHWs have worked with partners across the state.  In this Immersion, we will listen and learn from CHWs as they reflect on their experiences and why CHWs are important to advancing health equity.

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All governmental public health staff and allied partners are invited to join the Immersion. The June Immersion content may be of particular interest to individuals who want to learn more about CHWs, how they might be able to partner or work with CHWs, and how CHWs and community partnerships are integral to advancing health equity.

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Core components of a Community of Practice to improve community health worker performance: a qualitative study

Rachel hennein.

1 Uganda Tuberculosis Implementation Research Consortium, Makerere University, Kampala, Uganda

2 Department of Epidemiology of Microbial Diseases, Yale School of Public Health, New Haven, CT USA

3 Yale School of Medicine, New Haven, CT USA

Joseph M. Ggita

Patricia turimumahoro, emmanuel ochom, amanda j. gupta, achilles katamba.

4 Clinical Epidemiology and Biostatistics Unit, Department of Medicine, Makerere University College of Health Sciences, Kampala, Uganda

Mari Armstrong-Hough

5 Department of Social and Behavioral Sciences, New York University, New York, NY USA

6 Department of Epidemiology, New York University, New York, NY USA

J. Lucian Davis

7 Pulmonary, Critical Care, and Sleep Medicine Section, Yale School of Medicine, New Haven, CT USA

8 Center for Methods in Implementation and Prevention Science, Yale School of Public Health, New Haven, CT USA

Associated Data

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

Communities of Practice (CoPs) offer an accessible strategy for healthcare workers to improve the quality of care through knowledge sharing. However, not enough is known about which components of CoPs are core to facilitating behavior change. Therefore, we carried out a qualitative study to address these important gaps in the literature on CoPs and inform planning for an interventional study of CoPs.

We organized community health workers (CHWs) from two tuberculosis (TB) clinics in Kampala, Uganda, into a CoP from February to June 2018. We conducted interviews with CoP members to understand their perceptions of how the CoP influenced delivery of TB contact investigation. Using an abductive approach, we first applied inductive codes characterizing CHWs’ perceptions of how the CoP activities affected their delivery of contact investigation. We then systematically mapped these codes into their functional categories using the Behavior Change Technique (BCT) Taxonomy and the Behavior Change Wheel framework. We triangulated all interview findings with detailed field notes.

All eight members of the CoP agreed to participate in the interviews. CHWs identified five CoP activities as core to improving the quality of their work: (1) individual review of feedback reports, (2) collaborative improvement meetings, (3) real-time communications among members, (4) didactic education sessions, and (5) clinic-wide staff meetings. These activities incorporated nine different BCTs and five distinct intervention functions. CHWs reported that these activities provided a venue for them to share challenges, exchange knowledge, engage in group problem solving, and benefit from social support. CHWs also explained that they felt a shared sense of ownership of the CoP, which motivated them to propose and carry out innovations. CHWs described that the CoP strengthened their social and professional identities within and outside the group, and improved their self-efficacy.

Conclusions

We identified the core components and several mechanisms through which CoPs may improve CHW performance. Future studies should evaluate the importance of these mechanisms in mediating the effects of CoPs on program effectiveness.

Supplementary Information

The online version contains supplementary material available at 10.1186/s43058-022-00279-1.

Contributions to the literature

• Communities of Practice may improve performance among healthcare workers through knowledge sharing, social support, and problem solving. However, additional studies are needed that identify the specific group activities and behavioral mechanisms that influence performance, in order to guide planning, implementation, and evaluation of Communities of Practice.
• We conducted a qualitative study of a Community of Practice that supported community health workers delivering contact investigation for tuberculosis in Uganda.
• By cataloging group activities and linking those activities to an established model of behavior change, we identified core components of the Community of Practice that functioned to improve community health workers’ performance.

Sub-optimal healthcare worker performance is a major barrier to delivery of high-quality health services in low- and middle-income countries [ 1 – 3 ]. This barrier is particularly salient for community health workers (CHWs), who have limited formal health professional education and access to training in low-income countries [ 4 ]. While many quality improvement initiatives include training to improve healthcare worker performance, a systematic review of such strategies found that training was associated with only moderate improvements in performance. When combined with group problem solving, however, large improvements were observed [ 3 ]. Furthermore, a Cochrane qualitative evidence synthesis concluded that providing continuous education and enabling CHWs to share their experiences with peers facilitated their work [ 5 ].

Communities of Practice (CoPs) offer a promising mode of delivery for continuous group learning and problem solving [ 6 ]. Communities of Practice (CoPs) are groups of people with a common work objective who meet regularly to support each other, share and create knowledge, and explore innovations [ 6 , 7 ]. In their original studies among West African tailors, Lave and Wenger (1991) developed CoP theory to describe the organic learning that occurs among tradespersons and other professionals-in-training [ 6 – 8 ]. They theorized that the learning that happens within CoPs occurs through social interactions within the specific context where the task is meant to be performed [ 6 , 7 ].

CoPs have been used to improve organizational performance within the trades, business sector, and health field [ 7 – 11 ]. In the trades, CoPs have been established with the goal of developing competent tradespersons through interactions between novices and experts [ 12 , 13 ]. Within the business sector, CoPs have been used to improve job performance in a variety of organizations, from insurance businesses to technology firms [ 14 – 16 ]. Within the health field, CoPs have been established to train healthcare students, share knowledge among practicing healthcare workers, and facilitate uptake of evidence-based practices [ 17 – 32 ]. Empirical studies of CoPs in these sectors identified that they help participants develop their professional identities; improve their work-related knowledge, confidence, and performance; increase social capital; and enhance their social status [ 12 , 13 , 18 , 21 , 22 , 26 , 27 , 29 , 31 – 33 ].

Wenger (2002) describes three fundamental elements of CoPs: (1) domain (i.e., the subject of shared interest), (2) community (i.e., the social interactions and relationships among members), and (3) practice (i.e., the frameworks, ideas, tools, language, documents, and stories that members share) [ 34 , 35 ]. Previous studies have provided empirical data that support these three characteristics. For example, studies have highlighted that consistent participation of members during CoP activities is vital to foster social interactions and build a community [ 28 ]. These social interactions cultivate group trust, mutual respect, and confidence to share their ideas and experiences without fear of being judged, which is critical for negotiating the group’s purpose and goals (i.e., domain ) [ 14 , 19 , 33 ]. Furthermore, providing opportunities to interact with mentors and peers during and outside of work is important to develop shared frameworks, language, and tools to accomplish group goals (i.e., practice ) [ 12 , 13 , 18 , 36 – 38 ].

Despite this mounting evidence of the potential for CoPs to improve healthcare worker performance, there remain a few critical gaps in the literature pertinent to CHW CoPs in low-income countries. First, the majority of studies on CoPs have taken place in high- and middle-income countries, and additional exploration of CoP functioning in low-income countries is warranted given differences in culture, education systems, and health systems [ 10 , 11 ]. Furthermore, empirical evaluations of CoPs including CHWs are sparse, as the majority focus on nurses and physicians [ 10 , 11 ]. Thus, additional exploration of how CoPs function for lay healthcare workers who do not receive formalized health professional education is needed. While previous studies have focused on identifying the key elements of CoPs in healthcare, few have investigated the intervention components that elicit behavior change [ 10 , 11 , 39 ]. Identifying the core intervention components of CoPs (also known as the “active” components) that elicit behavior change could enable researchers and implementers to design them for continuous quality improvement [ 40 , 41 ]. Because the concept and theoretical understandings of CoPs are still evolving [ 8 , 9 , 42 ], applying behavioral theory to data collected in empirical studies of CoPs could improve our understanding of when, where, how, and under what conditions these groups can be engineered to change behavior [ 39 , 43 ]. For example, the Behavior Change Technique (BCT) Taxonomy and the Behavior Change Wheel framework provide comprehensive approaches to cataloging the core components of complex health interventions in order to design and implement strategies that optimize outcomes [ 44 , 45 ].

To address these gaps in the literature, we performed a qualitative study to identify the core components of a CHW CoP formed to improve tuberculosis (TB) contact investigation in Kampala, Uganda. Through semi-structured interviews and field notes, we aimed to explore CHWs’ experiences participating in the CoP and determine the extent to which the CoP was acceptable, feasible, and effective in facilitating delivery of contact investigation. We analyzed qualitative data using the BCT Taxonomy [ 45 ] and the Behavior Change Wheel’s intervention functions [ 44 ]. In so doing, we aimed to identify behavioral mechanisms to describe how CoP activities function to improve CHW performance in low-resource settings.

Uganda has a high TB burden, with an annual incidence rate of 201 cases per 100,000 and an annual mortality rate of 26 deaths per 100,000 [ 46 ]. In Kampala, TB services are provided free of charge through the Uganda National TB and Leprosy Program (NTLP) and the Kampala Capital City Authority. CHWs support clinic-based health workers in delivering TB services, with funding and technical assistance from non-governmental or research organizations partnering with the NTLP. TB CHWs in Kampala receive on-the-job training specific to delivering TB services in the community and are supported through supervision by TB clinic leaders. CHWs are responsible for community-based treatment adherence support and contact investigation, as well as clinic-based TB symptom screening, education, and counseling. Clinical data is recorded in paper logbooks, or in electronic case-record forms on mobile tablets.

CoP intervention

Our research team established a CoP in February 2018 within TB units at two public health centers in Kampala to support CHWs delivering contact investigation. The research team’s purpose for this study was to inform the implementation of CoPs in an upcoming stepped-wedge cluster randomized trial of CoPs to improve contact investigation for TB. All eight CHWs affiliated with these TB units were invited and agreed to participate in the CoP. Before the CoP began, all participating CHWs were funded through the research project, trained in contact investigation, informally communicated with each other, and received monthly supervision and feedback from TB clinic leaders. However, there was not a forum for CHWs to learn from each other or identify their own areas for improvement. Thus, the research team facilitated the establishment of a CoP to enable CHWs to problem solve, support each other, and brainstorm ways to improve contact investigation. The research team encouraged members to meet weekly on Friday mornings to share their experiences, successes, and challenges in delivering contact investigation in the prior week. The aims of these weekly meetings were to provide opportunities for members to engage with each other, develop group goals, and share stories about delivering care in the community, which relate to the three characteristics of CoPs described by Wenger (2002) (i.e., community , domain , and practice , respectively) [ 34 , 35 ]. Leadership responsibilities rotated weekly among all participants, with a new chairperson assigned at the end of each meeting to organize and lead the discussion the following week. To catalyze discussions and develop a shared accountability structure and tool (i.e., practice ), the research team provided performance reports listing incomplete contact investigation records for each CHW. The reports also presented facility-level process indicators for each step of the TB contact investigation cascade, including the stepwise proportions of (1) cases interviewed, (2) contacts screened, (3) eligible contacts completing evaluation, and (4) individuals diagnosed with active TB [ 47 ]. Apart from encouraging the CoP to meet weekly and providing feedback reports, the research team emphasized that the CoP should be run by its members.

Data collection

A Ugandan, male social scientist (JG) prospectively collected field notes during weekly CoP meetings. Field notes summarized the content of meetings, participation of members, interactions between participants, and meeting tone. Research staff invited all CoP participants to interview at a place and in a language (English or Luganda) of their choice in July 2018, five months after CoP initiation. Two researchers (MAH, JG) developed an interview guide to probe how CHWs perceived their roles delivering contact investigation during CoP implementation (Additional File 1 ). Three Ugandan members of the research team (JG, EO, PKT) who participated in CoP implementation discussed and revised the guide after reviewing the field notes. A Ugandan, male social scientist (JG) obtained verbal consent and conducted and audio-recorded all interviews. We then de-identified and transcribed all interviews, and translated Luganda interviews into English. The interviewer (JG) revised all transcripts for accuracy. The Makerere University School of Public Health Higher Degrees Research Ethics Committee and the Yale University Human Investigation Committee approved the study. We reported all findings using the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist [ 48 ].

Data Analysis

A non-Ugandan, female researcher (RH) with prior research experience in Uganda coded transcripts in ATLAS.ti using an abductive approach [ 49 ]. Abductive analysis employs both inductive codes that emerge from the data and deductive codes informed by theory. This approach facilitates conversation between empirical data and theory in order to validate, modify, and/or refute theoretical understandings of implementation [ 43 ]. We followed a four-step abductive analytic process to identify BCTs and intervention functions (Fig. ​ (Fig.1) 1 ) [ 50 ]. This included (1) cataloging activities, (2) identifying how activities affected behavior, (3) classifying BCTs, and (4) mapping intervention functions. First, the coder analyzed interviews inductively to identify CoP activities that CHWs described as benefitting their work. We cross-referenced activities that emerged from interviews with field notes and specified their actors, participants, modes of delivery, and frequencies using the Template for Intervention Description and Replication (TIDieR) checklist [ 51 ]. Second, the coder applied inductive codes to describe CHWs’ perceptions of how and why these activities influenced their delivery of TB contact investigation. In the third step, we systematically mapped inductive codes and themes to the BCT Taxonomy. The BCT Taxonomy was designed to characterize active ingredients of complex interventions [ 45 , 52 ]. We adapted definitions from the BCT Taxonomy to describe the CoP. We then organized the BCTs by relevant CoP activity and noted contextual factors that facilitated CHWs’ performance. Finally, we mapped BCTs to intervention functions using the Behavior Change Wheel framework to understand underlying mechanisms through which CoPs influence practice [ 53 ]. Three authors (RH, JLD, MAH) reviewed and discussed the mapped BCTs and intervention functions to reach consensus. Ugandan team members (JG, EO, PT) and non-Ugandan researchers with extensive local research experience (JLD, MAH, AJG) reviewed and validated the code structure. We triangulated data from field notes and semi-structured interviews. We defined data saturation as the point at which novel inductive codes ceased to emerge from the data [ 54 ].

Process model for identifying behavior change techniques and intervention functions of the Community of Practice using abductive analysis

All eight CHWs from the CoP agreed to participate in interviews. Four interviews were conducted in English, two in a mixture of English and Luganda, and two in Luganda. Interviews lasted from 48 to 69 min. Median age of participants was 39.5 years (range: 26–51) and six (75%) participants were female (Table ​ (Table1). 1 ). We reached data saturation after six interviews.

Participant characteristics

Abbreviations :  A-level , advanced (secondary school) level; O-level , ordinary (secondary school) level

CoP content

CHWs identified five core components from the CoP that facilitated their delivery of household contact investigation services (Table ​ (Table2). 2 ). These included (1) individual review of feedback reports, (2) collaborative improvement meetings, (3) real-time communication among members, (4) didactic education sessions, and (5) clinic-wide staff meetings. Two of these activities were proposed by the research team to establish the CoP (i.e., review of feedback reports and collaborative improvement meetings) and three were proposed and adopted by the CoP members (i.e., real-time communications among members, didactic education sessions, and clinic-wide staff meetings). We identified relevant BCTs and Behavior Change Wheel functions for each activity discussed (Tables ​ (Tables3 3 and ​ and4 4 and Fig. ​ Fig.2). 2 ). Additional File 2 describes peripheral components that facilitated the delivery of these core components, such as cellphone data plans to enable real-time communication among members.

Description of Community of Practice activities that emerged from the interviews

Adapted definitions for behavior change techniques and intervention functions relevant to Community of Practice activities

Note: Definitions for Behavior Change Techniques were adapted from Michie et al. (2013) and definitions for Intervention Functions were adapted from Michie et al. (2011)

Characterizing behavior change techniques and intervention functions of the Community of Practice intervention components

Conceptual model illustrating our implementation mapping exercise for the Community of Practice intervention. Starting at the far left, we linked intervention activities to specific behavior change techniques and related intervention functions, all to facilitate implementation of the evidence-based practice of tuberculosis contact investigation

Activity 1: Individual review of feedback reports

First, CHWs stated that review of feedback reports helped them improve the quality of contact investigation services. The research staff provided weekly performance reports to CoP members that included key indicators for the TB contact investigation cascade for each site. The weekly reports also included an itemized list of missing case record forms and the associated contacts for each individual CHW. CHWs could review their own individual reports to monitor their performance over time. One CHW explained:

“Those reports were very helpful in a way that it helped me figure out my weaknesses, where I had not done well. It would help me know the home visits I have and those I missed so I would know that I am demanded [responsible for] three home visits which was very helpful.” (CHW6, male, 43 years old)

Many respondents also suggested that reviewing and later referencing feedback reports served as “reminders” to complete any unfinished contact investigation activities. Thus, this theme mapped to the self-monitoring of behavior BCT and enablement Behavior Change Wheel function.

Next, respondents described how feedback reports enabled them to learn about their own individual performance as well as aggregate performance of all CHWs at the clinic. One CHW explained:

“For me the [feedback] dashboards were fine and they used to remind us, for example, when you forget and you did not do the clinical evaluation…how are you performing and how was the clinic also performing.” (CHW1, female, 26 years old)

Thus, through feedback reports, the CoP facilitated the feedback on behavior BCT and functioned through enablement .

CHWs suggested that feedback reports helped them gauge progress toward their objective of providing complete evaluation and linkage to treatment for all TB contacts. For example, one respondent explained:

“[Feedback reports] were good because they used to tell us what we should do, where we are delaying, what we are not doing well. Then we used to improve. They used to be good and in fact we should need them.” (CHW7, female, 30 years old)

By drawing attention to discrepancies between their activities and goals, CHWs emphasized that feedback reports helped them “get back on track.” This theme mapped to the discrepancy between current behavior and goal BCT and the enablement Behavior Change Wheel function.

Activity 2: Collaborative improvement meetings

CHWs described their experiences participating in weekly collaborative improvement meetings where they shared their experiences performing contact investigation, reviewed feedback reports with peers, and solved problems together. One CHW explained:

“I had worked before [the CoP was established] and they [the clinic staff] used to not know the challenges which we had and thus I used to spend three months on a problem. There is no way you could get over it. When I got the meetings weekly, I would share my ideas and problems and thus get a solution at that time.” (CHW1, female, 26 years old)

This theme mapped to the problem-solving BCT and enablement intervention function.

CHWs described that the feedback report discussions enabled them to support each other to reach their goal of completing contact investigation. For example, one respondent explained:

“Whenever you would get a challenge you could discuss it with other [CoP] members and they would give you advice. Because everyone gets their experience in a different way. We came to know that if this patient is not comfortable with me, I can switch to another community health worker. And things are sorted. So it was really good.” (CHW3, female, 36 years old)

The CHWs recognized that each CoP member had particular experiences and skills that they could use to support each other. Thus, this theme mapped to the social support (practical) BCT and to the enablement intervention function.

CHWs also described that the collaborative improvement meetings enabled them to compare their own metrics against each other. The field notes indicated that the CoP discussed each member’s performance one-by-one. For example, weekly performance reports itemized and flagged incomplete contact investigation procedures as “missing forms.” One respondent explained:

“I would first rush and look at the pending [reports] I have, the missing forms I have. Then I look through and see my number and say ‘Ahh, I have two missing forms’ and others have ten, others have four. Then you would say ‘Why do you have four, why do you have ten?’ Then they would remind us of the missing people [household contacts] …Then when you go back, you call that home, you ask them what you were missing.” (CHW8, female, 45 years old)

Because CHWs directly compared their own performance to that of their peers during group audit-and-feedback, this theme mapped to the social comparison BCT and modeling intervention function.

Furthermore, CHWs described that the collaborative improvement meetings increased their professional autonomy. The field notes described instances when CHWs brainstormed solutions for problems they were facing and then presented these solutions to the research coordinator to enact change. In interviews, CHWs explained that they felt a shared sense of ownership of the CoP and this sense of ownership enhanced their decision-making power to propose and carry out innovations:

“They called us a team. Then they introduced to us what we were going to do and learned that it was going to majorly depend on our side, as the [CoP] team. Because assuming we got a problem and needed a solution, we had to sit together and see the way forward. So, majorly it was on our decision making... In our teaching, we usually get orders from above. You are told what to do. And it’s not from down to up. But this time it was from down to up. So it wasn’t expected that way. It was new.” (CHW2, male, 51 years old)

Many CHWs reported that having greater agency was motivating and enabled them to make meaningful changes to facilitate their work. This theme mapped to the restructuring the social environment BCT and environmental restructuring intervention function.

Activity 3: Real-time communication among members

During weekly collaborative improvement meetings, CHWs concluded that having a system to communicate in real-time could facilitate timely support when problems arose in the field. The research team provided funding for and set up a WhatsApp messaging group to enable real-time communication between CoP members. The CHWs explained that having a WhatsApp group message gave them immediate access to a network of people should they experience a problem, especially in the field:

“If you needed some support, someone is there available for you to really support you with something that is challenging at the moment, which wasn’t there before…We developed a WhatsApp group. We used to communicate via phone calls and if one of the supervisors is not picking, [then] another is available. It really made some changes in the [communication] process.” (CHW3, female, 36 years old)

This theme mapped to the social support (practical) BCT and enablement function.

Activity 4: Didactic education sessions

CoP members invited experienced clinicians to deliver didactic education sessions on topics of interest. For example, field notes suggested that the CoP enabled members to identify gaps in their knowledge and skills for screening TB in children. CHWs then requested a didactic session on TB in children:

“I didn’t know how to screen TB in children. But during the CoP, we got the skills through our doctor... He gave us other skills of screening TB in children… It has raised me from one level of just being a community health worker of general health care to a more skilled [one] in TB…I can screen a child for TB, and I can give a full session on TB in children and adults.” (CHW4, female, 45 years old)

The CHWs suggested that receiving educational sessions enabled them to improve their self-efficacy. This theme mapped to the instruction on how to perform a behavior BCT and education and training intervention functions.

Furthermore, CHWs shared that expanding their interpersonal and technical skills through the didactic sessions enabled them to work independently in the community as health workers, or musawo , similar to nurses and doctors. One respondent shared:

“[The CoP] taught me how to be patient with patients, it taught me how to be a humble person to patients and a loving person… sometimes it is not easy for a doctor or a nurse to go to a patient’s house but a CHW goes deep inside. And on the side of the patients, it makes them happy to see a musawo coming to his house sitting on that dirty chair, sitting on that dirty mat, it makes the patient happy.” (CHW5, female, 33 years old)

CHWs emphasized that the trainings enabled them to identify themselves as more skilled and compassionate health workers, mapping to the identity associated with changed behavior BCT and the training and education intervention functions.

Activity 5: Clinic-wide staff meetings

During collaborative improvement meetings, CoP members discussed how to improve communication between CHWs and clinic staff to facilitate their work. Thus, the CoP began holding meetings between CHWs and Kampala Capital City Authority (KCCA) clinic staff, including the clinic in-charge, lab personnel, TB leader, and clinicians. These meetings provided an opportunity for CHWs to discuss their contributions with clinic staff. One CHW described:

“We were very much recognized by the KCCA people and I think they even appreciated the work that was done...Before they used to not recognize community health workers very much. They could minimize [our work] a bit. But by that time at least some change was there. They recognized what was done in the community because we used to even refer some other people for other problems, not only TB and HIV.” (CHW3, female, 36 years old)

Through clinic-wide staff meetings, clinic staff began recognizing CHWs’ work, improving their social standing within the clinic. This theme mapped to the restructuring the social environment BCT and environmental restructuring intervention function.

The CHWs explained that showcasing their successes to clinic staff also motivated clinic staff to support them when they faced barriers at the clinic. One respondent explained:

“They were all supportive, from sister in-charge to everyone, they were all supportive… in case I wanted anything, maybe from sister in-charge or lab or from a doctor or from a nurse, I could get it immediately…Because of the work I was doing. They saw that the work was good, they would make it easy for you.” (CHW5, female, 33 years old)

Thus, this theme mapped to the social support (practical) BCT and enablement intervention function.

These meetings also created opportunities for clinic staff and CHWs to problem solve together to improve TB care in the clinic and community. One CHW described:

“Another motivation was that we were able to communicate in our meetings… We had a chance to sit with our medical team of our facilities… so that anything beyond our capability was able to be solved because we had the medical personnel with us as we were discussing or sharing our problems and challenges.” (CHW2, male, 51 years old)

This theme mapped to the problem-solving BCT and enablement function.

A failure to implement, adapt, and sustain delivery of proven interventions is among the greatest barriers to control and elimination of TB [ 55 ], and CoPs offer an implementation strategy to achieve this goal through continuous group learning among healthcare workers. In this study, we used qualitative methods to catalog the activities that CHW participants of a CoP found to be most important to the CoP’s quality improvement efforts. We then categorized these activities using a well-established implementation framework and a linked taxonomy of behavior change. In so doing, we were able to specify the core and peripheral components and behavioral mechanisms of a working CoP. Our findings fill several important gaps in the literature related to how CoPs function, including how CoPs can operate in the context of a low-income country and how CoPs can be designed by researchers to improve delivery of evidence-based practices [ 10 , 11 ]. This information may guide planning, implementation, and evaluation of CoPs in other similar settings [ 51 , 56 ].

CHWs described five activities that were core to the workings of the CoP—two that were proposed by the research team to establish the CoP (i.e., review of feedback reports and collaborative improvement meetings) and three that were proposed and adopted by CoP members (i.e., real-time communications among members, didactic education sessions, and clinic-wide staff meetings). The collaborative improvement meetings and review of feedback reports provided a venue and opportunities for members to share challenges, exchange knowledge, engage in group problem solving, and benefit from social support. The three CoP-initiated activities facilitated social support in the field, restructured the social environment within and outside the clinic, and provided relevant education. CHWs described that being able to develop their own goals and activities was novel within their hierarchical work culture: “In our teaching, we usually get orders from above. You are told what to do. And it’s not from down to up. But this time it was from down to up.” Other studies of CoPs have also identified a contradiction between “getting orders from above” and being able to propose ideas “from down to up” [ 15 , 16 , 29 , 57 ]. For example, one study of a CoP of healthcare workers to implement falls prevention strategies found that perceived lack of support from management in prioritizing the CoP’s goals and activities was a key barrier to their program [ 29 ]. These tensions between CoP goals and management goals should be further explored, especially within health settings that have well-established hierarchies, in order to ensure that CoPs retain their organic, bottom-up approach to learning.

Our study reinforces and builds upon a small existing literature describing the mechanisms of CoPs in low-income countries. Because other studies of CoPs have not used the same theoretical approaches to explicitly link activities to BCTs or intervention functions, our findings are not directly comparable. Nevertheless, the findings of prior studies do identify similar constructs as core to CoP functioning. For example, a study of a CoP including physicians, nurses, and pharmacists to improve HIV care in Namibia found that clinical knowledge and self-efficacy to deliver HIV services increased while professional isolation decreased after CoP implementation [ 32 ]. These findings suggest that this CoP may have functioned through the instruction on how to perform a behavior and social support BCTs, similar to our findings. Another study of a CoP including CHWs and traditional healers focused on Buruli ulcer care in Cameroon found that the CoP enabled CHWs to develop more autonomy in providing patient care, which led to improved social standing [ 31 ], consistent with the restructuring the social environment BCT. Similarly, CHWs in our study reported being motivated by the ways the CoP restructured the social environment and fostered increased autonomy and efficiency in solving problems. Taken together, these findings suggest that healthcare worker CoPs can facilitate delivery of high-quality care by enhancing members’ knowledge, self-efficacy, social support, and social status, which may be important motivators.

Our study provides preliminary insights into how CoPs can be designed, implemented, and supported by research teams in a way that enables CoP members to take ownership of the group. Our research team facilitated the establishment of a CHW CoP by integrating Wenger’s (2002)’s three elements of CoPs: (1) domain , (2) community , and (3) practice [ 34 ]. First, we invited CHWs to participate who had a common goal of improving contact investigation for TB (i.e., domain ). We also suggested that CHWs meet weekly to promote community building and provided feedback reports to foster their practice . To encourage CHW ownership of the CoP, the chairperson of the weekly meetings rotated among all CHW participants. This structure enabled CHWs to develop their own group goals and norms after the research team initially implemented the CoP. Other research teams have also established CoPs by encouraging meetings to initially establish the group, and then gradually allowing members to take ownership of the CoP. For example, in a study of a CoP to improve the use of an evidence-based tool for assessing children’s mental health, the CoP was initially established by a facilitator [ 26 ]. In their initial CoP meeting, the facilitator described the purpose of CoPs and best practices for engaging with the community. In the following five meetings, the CoP members jointly outlined the agenda and led the sessions by describing issues that arose when implementing the evidence-based tool and providing each other with advice. Another study of a CoP to improve the quality of referral letters by general practitioners also initially established the group with the support of the research team [ 30 ]. The researchers recruited CoP members by inviting general practitioners that acknowledged the need for improving referral letters. Once in the group, the members defined the standards for quality of referral letters and set benchmarks for their goals. Despite these findings, there is a lack of clarity in the roles of the research team and project coordinators in facilitating and maintaining CoPs, and the extent to which the outcomes of the CoP are driven by the support of facilitators or by the CoP members themselves [ 11 , 42 ]. For example, in the study of a CoP focused on improving the quality of referral letters, the research team identified that it was important to have a project coordinator regularly communicate with the CoP to maintain interest and motivation in the project [ 30 ]. Future studies of CoPs should more explicitly explore the extent to which the outcomes of the CoP were attributable to the CoP itself or the facilitation by the research team.

Our study has some limitations. Because the interviews were conducted by research staff, social desirability bias might have influenced CHWs to describe activities in an overly favorable way. Given the nature of qualitative research, our study may not be generalizable to CoPs with different members, goals, and contexts. Furthermore, our study included a single CoP with only eight members focused on TB contact investigation; additional studies of CoPs focused on other evidence-based practices will be needed to validate, modify, and/or refute our findings. Due to the small sample size, we were not able to identify differences in responses by CHW characteristics, such as age, gender, or years of experience. We interviewed CHWs five months after CoP initiation; thus, we could not assess long-term sustainability of the CoP or the extent to which it evolved over time. Although there was evidence that many aspects of the CoP were driven by CoP members, we were not able to explicitly differentiate how much of the success of the CoP was related to the facilitation and support from the research team. Lastly, due to the iterative nature of the development of the CoP and its activities, the quantitative data collected during the study period did not have adequate power to measure the effectiveness of the CoP. Instead, participants reported perceived improvements in contact investigation attributable to the CoP. Future studies would benefit from using a mixed-methods approach to assessing CoPs in order to quantitatively explore the effectiveness and behavioral mechanisms of CoPs.

Our study also had several strengths. First, our overall approach drew on key strategies to harness the power of theorizing in implementation science, including (1) approaching the empirical data in a theoretically informative way by analyzing the interviews using an abductive approach informed by the BCT Taxonomy and Behavior Change Wheel framework, (2) theorizing the dynamic relationships between the CoP and Ugandan context by identifying potential behavior change mechanisms, and (3) broadening the repertoire of major theoretical traditions by integrating classical social learning theories with implementation theories [ 43 ]. Furthermore, by combining inductive and deductive analytical approaches, we could identify the core components of the CoP from the perspectives of CHWs, while also standardizing our specification of the CoP to make it more transferrable to other similar settings, for replication, adaptation, and scale-up. Lastly, by triangulating our interview findings with field notes collected through observations, we aimed to mitigate social desirability bias and gain a comprehensive understanding of CoP activities.

In summary, we identified the BCTs and intervention functions through which a CoP facilitated the delivery of high-quality TB care by CHWs in Uganda. Additional empirical studies are warranted to validate and/or modify these proposed core components to better understand how and under what conditions CoPs can be implemented to facilitate CHW-delivered health services. By using behavioral theory to better characterize CoPs, we hope that future CoPs can be appropriately adapted to maximize their effectiveness and sustainability.

Acknowledgements

We would like to acknowledge all the community health workers who participated in our study and provided their insights.

Abbreviations

Authors’ contributions.

JLD, MAH, JG, and RH conceived the design of this study. JG and MAH created the interview guide and JG, EO, and PT revised the interview guide. JG obtained verbal consent and conducted the interviews. RH conducted data analysis. All authors (RH, JG, PT, EO, AJG, AK, MAH, JLD) substantively contributed to the interpretation of the data based on the local context and the current implementation science literature. RH drafted the initial manuscript and all other authors (JG, PT, EO, AJG, AK, MAH, JLD) substantively revised the manuscript. The authors (RH, JG, PT, EO, AJG, AK, MAH, JLD) read and approved the final manuscript.

This work was supported by the National Institutes of Health Medical Scientist Training Program Training Grant T32GM007205 (RH). This work was also supported by the National Institutes of Health grant R01AI104824 (JLD). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Availability of data and materials

Declarations.

Each participant provided verbal consent. The study was approved by the Makerere University School of Public Health Higher Degrees Research Ethics Committee and Yale University Human Investigation Committee approved the study.

Not applicable.

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rachel Hennein and Joseph M. Ggita are co-first authors.

Mari Armstrong-Hough and J. Lucian Davis are co-senior authors.

• Open access
• Published: 13 May 2024

What are the strengths and limitations to utilising creative methods in public and patient involvement in health and social care research? A qualitative systematic review

• Olivia R. Phillips 1 , 2   na1 ,
• Cerian Harries 2 , 3   na1 ,
• Jo Leonardi-Bee 1 , 2 , 4   na1 ,
• Holly Knight 1 , 2 ,
• Lauren B. Sherar 2 , 3 ,
• Veronica Varela-Mato 2 , 3 &
• Joanne R. Morling 1 , 2 , 5  

Research Involvement and Engagement volume  10 , Article number:  48 ( 2024 ) Cite this article

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There is increasing interest in using patient and public involvement (PPI) in research to improve the quality of healthcare. Ordinarily, traditional methods have been used such as interviews or focus groups. However, these methods tend to engage a similar demographic of people. Thus, creative methods are being developed to involve patients for whom traditional methods are inaccessible or non-engaging.

To determine the strengths and limitations to using creative PPI methods in health and social care research.

Electronic searches were conducted over five databases on 14th April 2023 (Web of Science, PubMed, ASSIA, CINAHL, Cochrane Library). Studies that involved traditional, non-creative PPI methods were excluded. Creative PPI methods were used to engage with people as research advisors, rather than study participants. Only primary data published in English from 2009 were accepted. Title, abstract and full text screening was undertaken by two independent reviewers before inductive thematic analysis was used to generate themes.

Twelve papers met the inclusion criteria. The creative methods used included songs, poems, drawings, photograph elicitation, drama performance, visualisations, social media, photography, prototype development, cultural animation, card sorting and persona development. Analysis identified four limitations and five strengths to the creative approaches. Limitations included the time and resource intensive nature of creative PPI, the lack of generalisation to wider populations and ethical issues. External factors, such as the lack of infrastructure to support creative PPI, also affected their implementation. Strengths included the disruption of power hierarchies and the creation of a safe space for people to express mundane or “taboo” topics. Creative methods are also engaging, inclusive of people who struggle to participate in traditional PPI and can also be cost and time efficient.

‘Creative PPI’ is an umbrella term encapsulating many different methods of engagement and there are strengths and limitations to each. The choice of which should be determined by the aims and requirements of the research, as well as the characteristics of the PPI group and practical limitations. Creative PPI can be advantageous over more traditional methods, however a hybrid approach could be considered to reap the benefits of both. Creative PPI methods are not widely used; however, this could change over time as PPI becomes embedded even more into research.

Plain English Summary

It is important that patients and public are included in the research process from initial brainstorming, through design to delivery. This is known as public and patient involvement (PPI). Their input means that research closely aligns with their wants and needs. Traditionally to get this input, interviews and group discussions are held, but this can exclude people who find these activities non-engaging or inaccessible, for example those with language challenges, learning disabilities or memory issues. Creative methods of PPI can overcome this. This is a broad term describing different (non-traditional) ways of engaging patients and public in research, such as through the use or art, animation or performance. This review investigated the reasons why creative approaches to PPI could be difficult (limitations) or helpful (strengths) in health and social care research. After searching 5 online databases, 12 studies were included in the review. PPI groups included adults, children and people with language and memory impairments. Creative methods included songs, poems, drawings, the use of photos and drama, visualisations, Facebook, creating prototypes, personas and card sorting. Limitations included the time, cost and effort associated with creative methods, the lack of application to other populations, ethical issues and buy-in from the wider research community. Strengths included the feeling of equality between academics and the public, creation of a safe space for people to express themselves, inclusivity, and that creative PPI can be cost and time efficient. Overall, this review suggests that creative PPI is worthwhile, however each method has its own strengths and limitations and the choice of which will depend on the research project, PPI group characteristics and other practical limitations, such as time and financial constraints.

Peer Review reports

Introduction

Patient and public involvement (PPI) is the term used to describe the partnership between patients (including caregivers, potential patients, healthcare users etc.) or the public (a community member with no known interest in the topic) with researchers. It describes research that is done “‘with’ or ‘by’ the public, rather than ‘to,’ ‘about’ or ‘for’ them” [ 1 ]. In 2009, it became a legislative requirement for certain health and social care organisations to include patients, families, carers and communities in not only the planning of health and social care services, but the commissioning, delivery and evaluation of them too [ 2 ]. For example, funding applications for the National Institute of Health and Care Research (NIHR), a UK funding body, mandates a demonstration of how researchers plan to include patients/service users, the public and carers at each stage of the project [ 3 ]. However, this should not simply be a tokenistic, tick-box exercise. PPI should help formulate initial ideas and should be an instrumental, continuous part of the research process. Input from PPI can provide unique insights not yet considered and can ensure that research and health services are closely aligned to the needs and requirements of service users PPI also generally makes research more relevant with clearer outcomes and impacts [ 4 ]. Although this review refers to both patients and the public using the umbrella term ‘PPI’, it is important to acknowledge that these are two different groups with different motivations, needs and interests when it comes to health research and service delivery [ 5 ].

Despite continuing recognition of the need of PPI to improve quality of healthcare, researchers have also recognised that there is no ‘one size fits all’ method for involving patients [ 4 ]. Traditionally, PPI methods invite people to take part in interviews or focus groups to facilitate discussion, or surveys and questionnaires. However, these can sometimes be inaccessible or non-engaging for certain populations. For example, someone with communication difficulties may find it difficult to engage in focus groups or interviews. If individuals lack the appropriate skills to interact in these types of scenarios, they cannot take advantage of the participation opportunities it can provide [ 6 ]. Creative methods, however, aim to resolve these issues. These are a relatively new concept whereby researchers use creative methods (e.g., artwork, animations, Lego), to make PPI more accessible and engaging for those whose voices would otherwise go unheard. They ensure that all populations can engage in research, regardless of their background or skills. Seminal work has previously been conducted in this area, which brought to light the use of creative methodologies in research. Leavy (2008) [ 7 ] discussed how traditional interviews had limits on what could be expressed due to their sterile, jargon-filled and formulaic structure, read by only a few specialised academics. It was this that called for more creative approaches, which included narrative enquiry, fiction-based research, poetry, music, dance, art, theatre, film and visual art. These practices, which can be used in any stage of the research cycle, supported greater empathy, self-reflection and longer-lasting learning experiences compared to interviews [ 7 ]. They also pushed traditional academic boundaries, which made the research accessible not only to researchers, but the public too. Leavy explains that there are similarities between arts-based approaches and scientific approaches: both attempts to investigate what it means to be human through exploration, and used together, these complimentary approaches can progress our understanding of the human experience [ 7 ]. Further, it is important to acknowledge the parallels and nuances between creative and inclusive methods of PPI. Although creative methods aim to be inclusive (this should underlie any PPI activity, whether creative or not), they do not incorporate all types of accessible, inclusive methodologies e.g., using sign language for people with hearing impairments or audio recordings for people who cannot read. Given that there was not enough scope to include an evaluation of all possible inclusive methodologies, this review will focus on creative methods of PPI only.

We aimed to conduct a qualitative systematic review to highlight the strengths of creative PPI in health and social care research, as well as the limitations, which might act as a barrier to their implementation. A qualitative systematic review “brings together research on a topic, systematically searching for research evidence from primary qualitative studies and drawing the findings together” [ 8 ]. This review can then advise researchers of the best practices when designing PPI.

Public involvement

The PHIRST-LIGHT Public Advisory Group (PAG) consists of a team of experienced public contributors with a diverse range of characteristics from across the UK. The PAG was involved in the initial question setting and study design for this review.

Search strategy

For the purpose of this review, the JBI approach for conducting qualitative systematic reviews was followed [ 9 ]. The search terms were (“creativ*” OR “innovat*” OR “authentic” OR “original” OR “inclu*”) AND (“public and patient involvement” OR “patient and public involvement” OR “public and patient involvement and engagement” OR “patient and public involvement and engagement” OR “PPI” OR “PPIE” OR “co-produc*” OR “co-creat*” OR “co-design*” OR “cooperat*” OR “co-operat*”). This search string was modified according to the requirements of each database. Papers were filtered by title, abstract and keywords (see Additional file 1 for search strings). The databases searched included Web of Science (WoS), PubMed, ASSIA and CINAHL. The Cochrane Library was also searched to identify relevant reviews which could lead to the identification of primary research. The search was conducted on 14/04/23. As our aim was to report on the use of creative PPI in research, rather than more generic public engagement, we used electronic databases of scholarly peer-reviewed literature, which represent a wide range of recognised databases. These identified studies published in general international journals (WoS, PubMed), those in social sciences journals (ASSIA), those in nursing and allied health journals (CINAHL), and trials of interventions (Cochrane Library).

Inclusion criteria

Only full-text, English language, primary research papers from 2009 to 2023 were included. This was the chosen timeframe as in 2009 the Health and Social Reform Act made it mandatory for certain Health and Social Care organisations to involve the public and patients in planning, delivering, and evaluating services [ 2 ]. Only creative methods of PPI were accepted, rather than traditional methods, such as interviews or focus groups. For the purposes of this paper, creative PPI included creative art or arts-based approaches (e.g., e.g. stories, songs, drama, drawing, painting, poetry, photography) to enhance engagement. Titles were related to health and social care and the creative PPI was used to engage with people as research advisors, not as study participants. Meta-analyses, conference abstracts, book chapters, commentaries and reviews were excluded. There were no limits concerning study location or the demographic characteristics of the PPI groups. Only qualitative data were accepted.

Quality appraisal

Quality appraisal using the Critical Appraisal Skills Programme (CASP) checklist [ 10 ] was conducted by the primary authors (ORP and CH). This was done independently, and discrepancies were discussed and resolved. If a consensus could not be reached, a third independent reviewer was consulted (JRM). The full list of quality appraisal questions can be found in Additional file 2 .

Data extraction

ORP extracted the study characteristics and a subset of these were checked by CH. Discrepancies were discussed and amendments made. Extracted data included author, title, location, year of publication, year study was carried out, research question/aim, creative methods used, number of participants, mean age, gender, ethnicity of participants, setting, limitations and strengths of creative PPI and main findings.

Data analysis

The included studies were analysed using inductive thematic analysis [ 11 ], where themes were determined by the data. The familiarisation stage took place during full-text reading of the included articles. Anything identified as a strength or limitation to creative PPI methods was extracted verbatim as an initial code and inputted into the data extraction Excel sheet. Similar codes were sorted into broader themes, either under ‘strengths’ or ‘limitations’ and reviewed. Themes were then assigned a name according to the codes.

The search yielded 9978 titles across the 5 databases: Web of Science (1480 results), PubMed (94 results), ASSIA (2454 results), CINAHL (5948 results) and Cochrane Library (2 results), resulting in 8553 different studies after deduplication. ORP and CH independently screened their titles and abstracts, excluding those that did not meet the criteria. After assessment, 12 studies were included (see Fig.  1 ).

PRISMA flowchart of the study selection process

Study characteristics

The included studies were published between 2018 and 2022. Seven were conducted in the UK [ 12 , 14 , 15 , 17 , 18 , 19 , 23 ], two in Canada [ 21 , 22 ], one in Australia [ 13 ], one in Norway [ 16 ] and one in Ireland [ 20 ]. The PPI activities occurred across various settings, including a school [ 12 ], social club [ 12 ], hospital [ 17 ], university [ 22 ], theatre [ 19 ], hotel [ 20 ], or online [ 15 , 21 ], however this information was omitted in 5 studies [ 13 , 14 , 16 , 18 , 23 ]. The number of people attending the PPI sessions varied, ranging from 6 to 289, however the majority (ten studies) had less than 70 participants [ 13 , 14 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 ]. Seven studies did not provide information on the age or gender of the PPI groups. Of those that did, ages ranged from 8 to 76 and were mostly female. The ethnicities of the PPI group members were also rarely recorded (see Additional file 3 for data extraction table).

Types of creative methods

The type of creative methods used to engage the PPI groups were varied. These included songs, poems, drawings, photograph elicitation, drama performance, visualisations, Facebook, photography, prototype development, cultural animation, card sorting and creating personas (see Table  1 ). These were sometimes accompanied by traditional methods of PPI such as interviews and focus group discussions.

The 12 included studies were all deemed to be of good methodological quality, with scores ranging from 6/10 to 10/10 with the CASP critical appraisal tool [ 10 ] (Table  2 ).

Thematic analysis

Analysis identified four limitations and five strengths to creative PPI (see Fig.  2 ). Limitations included the time and resource intensity of creative PPI methods, its lack of generalisation, ethical issues and external factors. Strengths included the disruption of power hierarchies, the engaging and inclusive nature of the methods and their long-term cost and time efficiency. Creative PPI methods also allowed mundane and “taboo” topics to be discussed within a safe space.

Theme map of strengths and limitations

Limitations of creative PPI

Creative ppi methods are time and resource intensive.

The time and resource intensive nature of creative PPI methods is a limitation, most notably for the persona-scenario methodology. Valaitis et al. [ 22 ] used 14 persona-scenario workshops with 70 participants to co-design a healthcare intervention, which aimed to promote optimal aging in Canada. Using the persona method, pairs composed of patients, healthcare providers, community service providers and volunteers developed a fictional character which they believed represented an ‘end-user’ of the healthcare intervention. Due to the depth and richness of the data produced the authors reported that it was time consuming to analyse. Further, they commented that the amount of information was difficult to disseminate to scientific leads and present at team meetings. Additionally, to ensure the production of high-quality data, to probe for details and lead group discussion there was a need for highly skilled facilitators. The resource intensive nature of the creative co-production was also noted in a study using the persona scenario and creative worksheets to develop a prototype decision support tool for individuals with malignant pleural effusion [ 17 ]. With approximately 50 people, this was also likely to yield a high volume of data to consider.

To prepare materials for populations who cannot engage in traditional methods of PPI was also timely. Kearns et al. [ 18 ] developed a feedback questionnaire for people with aphasia to evaluate ICT-delivered rehabilitation. To ensure people could participate effectively, the resources used during the workshops, such as PowerPoints, online images and photographs, had to be aphasia-accessible, which was labour and time intensive. The author warned that this time commitment should not be underestimated.

There are further practical limitations to implementing creative PPI, such as the costs of materials for activities as well as hiring a space for workshops. For example, the included studies in this review utilised pens, paper, worksheets, laptops, arts and craft supplies and magazines and took place in venues such as universities, a social club, and a hotel. Further, although not limited to creative PPI methods exclusively but rather most studies involving the public, a financial incentive was often offered for participation, as well as food, parking, transport and accommodation [ 21 , 22 ].

Creative PPI lacks generalisation

Another barrier to the use of creative PPI methods in health and social care research was the individual nature of its output. Those who participate, usually small in number, produce unique creative outputs specific to their own experiences, opinions and location. Craven et al. [ 13 ], used arts-based visualisations to develop a toolbox for adults with mental health difficulties. They commented, “such an approach might still not be worthwhile”, as the visualisations were individualised and highly personal. This indicates that the output may fail to meet the needs of its end-users. Further, these creative PPI groups were based in certain geographical regions such as Stoke-on-Trent [ 19 ] Sheffield [ 23 ], South Wales [ 12 ] or Ireland [ 20 ], which limits the extent the findings can be applied to wider populations, even within the same area due to individual nuances. Further, the study by Galler et al. [ 16 ], is specific to the Norwegian context and even then, maybe only a sub-group of the Norwegian population as the sample used was of higher socioeconomic status.

However, Grindell et al. [ 17 ], who used persona scenarios, creative worksheets and prototype development, pointed out that the purpose of this type of research is to improve a certain place, rather than apply findings across other populations and locations. Individualised output may, therefore, only be a limitation to research wanting to conduct PPI on a large scale.

If, however, greater generalisation within PPI is deemed necessary, then social media may offer a resolution. Fedorowicz et al. [ 15 ], used Facebook to gain feedback from the public on the use of video-recording methodology for an upcoming project. This had the benefit of including a more diverse range of people (289 people joined the closed group), who were spread geographically around the UK, as well as seven people from overseas.

Creative PPI has ethical issues

As with other research, ethical issues must be taken into consideration. Due to the nature of creative approaches, as well as the personal effort put into them, people often want to be recognised for their work. However, this compromises principles so heavily instilled in research such as anonymity and confidentiality. With the aim of exploring issues related to health and well-being in a town in South Wales, Byrne et al. [ 12 ], asked year 4/5 and year 10 pupils to create poems, songs, drawings and photographs. Community members also created a performance, mainly of monologues, to explore how poverty and inequalities are dealt with. Byrne noted the risks of these arts-based approaches, that being the possibility of over-disclosure and consequent emotional distress, as well as people’s desire to be named for their work. On one hand, the anonymity reduces the sense of ownership of the output as it does not portray a particular individual’s lived experience anymore. On the other hand, however, it could promote a more honest account of lived experience. Supporting this, Webber et al. [ 23 ], who used the persona method to co-design a back pain educational resource prototype, claimed that the anonymity provided by this creative technique allowed individuals to externalise and anonymise their own personal experience, thus creating a more authentic and genuine resource for future users. This implies that anonymity can be both a limitation and strength here.

The use of creative PPI methods is impeded by external factors

Despite the above limitations influencing the implementation of creative PPI techniques, perhaps the most influential is that creative methodologies are simply not mainstream [ 19 ]. This could be linked to the issues above, like time and resource intensity, generalisation and ethical issues but it is also likely to involve more systemic factors within the research community. Micsinszki et al. [ 21 ], who co-designed a hub for the health and well-being of vulnerable populations, commented that there is insufficient infrastructure to conduct meaningful co-design as well as a dominant medical model. Through a more holistic lens, there are “sociopolitical environments that privilege individualism over collectivism, self-sufficiency over collaboration, and scientific expertise over other ways of knowing based on lived experience” [ 21 ]. This, it could be suggested, renders creative co-design methodologies, which are based on the foundations of collectivism, collaboration and imagination an invalid technique in the research field, which is heavily dominated by more scientific methods offering reproducibility, objectivity and reliability.

Although we acknowledge that creative PPI techniques are not always appropriate, it may be that their main limitation is the lack of awareness of these methods or lack of willingness to use them. Further, there is always the risk that PPI, despite being a mandatory part of research, is used in a tokenistic or tick-box fashion [ 20 ], without considering the contribution that meaningful PPI could make to enhancing the research. It may be that PPI, let alone creative PPI, is not at the forefront of researchers’ minds when planning research.

Strengths of creative PPI

Creative ppi disrupts power hierarchies.

One of the main strengths of creative PPI techniques, cited most frequently in the included literature, was that they disrupt traditional power hierarchies [ 12 , 13 , 17 , 19 , 23 ]. For example, the use of theatre performance blurred the lines between professional and lay roles between the community and policy makers [ 12 ]. Individuals created a monologue to portray how poverty and inequality impact daily life and presented this to representatives of the National Assembly of Wales, Welsh Government, the Local Authority, Arts Council and Westminster. Byrne et al. [ 12 ], states how this medium allowed the community to engage with the people who make decisions about their lives in an environment of respect and understanding, where the hierarchies are not as visible as in other settings, e.g., political surgeries. Creative PPI methods have also removed traditional power hierarchies between researchers and adolescents. Cook et al. [ 13 ], used arts-based approaches to explore adolescents’ ideas about the “perfect” condom. They utilised the “Life Happens” resource, where adolescents drew and then decorated a person with their thoughts about sexual relationships, not too dissimilar from the persona-scenario method. This was then combined with hypothetical scenarios about sexuality. A condom-mapping exercise was then implemented, where groups shared the characteristics that make a condom “perfect” on large pieces of paper. Cook et al. [ 13 ], noted that usually power imbalances make it difficult to elicit information from adolescents, however these power imbalances were reduced due to the use of creative co-design techniques.

The same reduction in power hierarchies was noted by Grindell et al. [ 17 ], who used the person-scenario method and creative worksheets with individuals with malignant pleural effusion. This was with the aim of developing a prototype of a decision support tool for patients to help with treatment options. Although this process involved a variety of stakeholders, such as patients, carers and healthcare professionals, creative co-design was cited as a mechanism that worked to reduce power imbalances – a limitation of more traditional methods of research. Creative co-design blurred boundaries between end-users and clinical staff and enabled the sharing of ideas from multiple, valuable perspectives, meaning the prototype was able to suit user needs whilst addressing clinical problems.

Similarly, a specific creative method named cultural animation was also cited to dissolve hierarchies and encourage equal contributions from participants. Within this arts-based approach, Keleman et al. [ 19 ], explored the concept of “good health” with individuals from Stoke-on Trent. Members of the group created art installations using ribbons, buttons, cardboard and straws to depict their idea of a “healthy community”, which was accompanied by a poem. They also created a 3D Facebook page and produced another poem or song addressing the government to communicate their version of a “picture of health”. Public participants said that they found the process empowering, honest, democratic, valuable and practical.

This dissolving of hierarchies and levelling of power is beneficial as it increases the sense of ownership experienced by the creators/producers of the output [ 12 , 17 , 23 ]. This is advantageous as it has been suggested to improve its quality [ 23 ].

Creative PPI allows the unsayable to be said

Creative PPI fosters a safe space for mundane or taboo topics to be shared, which may be difficult to communicate using traditional methods of PPI. For example, the hypothetical nature of condom mapping and persona-scenarios meant that adolescents could discuss a personal topic without fear of discrimination, judgement or personal disclosure [ 13 ]. The safe space allowed a greater volume of ideas to be generated amongst peers where they might not have otherwise. Similarly, Webber et al. [ 23 ], , who used the persona method to co-design the prototype back pain educational resource, also noted how this method creates anonymity whilst allowing people the opportunity to externalise personal experiences, thoughts and feelings. Other creative methods were also used, such as drawing, collaging, role play and creating mood boards. A cardboard cube (labelled a “magic box”) was used to symbolise a physical representation of their final prototype. These creative methods levelled the playing field and made personal experiences accessible in a safe, open environment that fostered trust, as well as understanding from the researchers.

It is not only sensitive subjects that were made easier to articulate through creative PPI. The communication of mundane everyday experiences were also facilitated, which were deemed typically ‘unsayable’. This was specifically given in the context of describing intangible aspects of everyday health and wellbeing [ 11 ]. Graphic designers can also be used to visually represent the outputs of creative PPI. These captured the movement and fluidity of people and well as the relationships between them - things that cannot be spoken but can be depicted [ 21 ].

Creative PPI methods are inclusive

Another strength of creative PPI was that it is inclusive and accessible [ 17 , 19 , 21 ]. The safe space it fosters, as well as the dismantling of hierarchies, welcomed people from a diverse range of backgrounds and provided equal opportunities [ 21 ], especially for those with communication and memory difficulties who might be otherwise excluded from PPI. Kelemen et al. [ 19 ], who used creative methods to explore health and well-being in Stoke-on-Trent, discussed how people from different backgrounds came together and connected, discussed and reached a consensus over a topic which evoked strong emotions, that they all have in common. Individuals said that the techniques used “sets people to open up as they are not overwhelmed by words”. Similarly, creative activities, such as the persona method, have been stated to allow people to express themselves in an inclusive environment using a common language. Kearns et al. [ 18 ], who used aphasia-accessible material to develop a questionnaire with aphasic individuals, described how they felt comfortable in contributing to workshops (although this material was time-consuming to make, see ‘Limitations of creative PPI’ ).

Despite the general inclusivity of creative PPI, it can also be exclusive, particularly if online mediums are used. Fedorowicz et al. [ 15 ], used Facebook to create a PPI group, and although this may rectify previous drawbacks about lack of generalisation of creative methods (as Facebook can reach a greater number of people, globally), it excluded those who are not digitally active or have limited internet access or knowledge of technology. Online methods have other issues too. Maintaining the online group was cited as challenging and the volume of responses required researchers to interact outside of their working hours. Despite this, online methods like Facebook are very accessible for people who are physically disabled.

Creative PPI methods are engaging

The process of creative PPI is typically more engaging and produces more colourful data than traditional methods [ 13 ]. Individuals are permitted and encouraged to explore a creative self [ 19 ], which can lead to the exploration of new ideas and an overall increased enjoyment of the process. This increased engagement is particularly beneficial for younger PPI groups. For example, to involve children in the development of health food products, Galler et al. [ 16 ] asked 9-12-year-olds to take photos of their food and present it to other children in a “show and tell” fashion. They then created a newspaper article describing a new healthy snack. In this creative focus group, children were given lab coats to further their identity as inventors. Galler et al. [ 16 ], notes that the methods were highly engaging and facilitated teamwork and group learning. This collaborative nature of problem-solving was also observed in adults who used personas and creative worksheets to develop the resource for lower back pain [ 23 ]. Dementia patients too have been reported to enjoy the creative and informal approach to idea generation [ 20 ].

The use of cultural animation allowed people to connect with each other in a way that traditional methods do not [ 19 , 21 ]. These connections were held in place by boundary objects, such as ribbons, buttons, fabric and picture frames, which symbolised a shared meaning between people and an exchange of knowledge and emotion. Asking groups to create an art installation using these objects further fostered teamwork and collaboration, both at an individual and collective level. The exploration of a creative self increased energy levels and encouraged productive discussions and problem-solving [ 19 ]. Objects also encouraged a solution-focused approach and permitted people to think beyond their usual everyday scope [ 17 ]. They also allowed facilitators to probe deeper about the greater meanings carried by the object, which acted as a metaphor [ 21 ].

From the researcher’s point of view, co-creative methods gave rise to ideas they might not have initially considered. Valaitis et al. [ 22 ], found that over 40% of the creative outputs were novel ideas brought to light by patients, healthcare providers/community care providers, community service providers and volunteers. One researcher commented, “It [the creative methods] took me on a journey, in a way that when we do other pieces of research it can feel disconnected” [ 23 ]. Another researcher also stated they could not return to the way they used to do research, as they have learnt so much about their own health and community and how they are perceived [ 19 ]. This demonstrates that creative processes not only benefit the project outcomes and the PPI group, but also facilitators and researchers. However, although engaging, creative methods have been criticised for not demonstrating academic rigour [ 17 ]. Moreover, creative PPI may also be exclusive to people who do not like or enjoy creative activities.

Creative PPI methods are cost and time efficient

Creative PPI workshops can often produce output that is visible and tangible. This can save time and money in the long run as the output is either ready to be implemented in a healthcare setting or a first iteration has already been developed. This may also offset the time and costs it takes to implement creative PPI. For example, the prototype of the decision support tool for people with malignant pleural effusion was developed using personas and creative worksheets. The end result was two tangible prototypes to drive the initial idea forward as something to be used in practice [ 17 ]. The use of creative co-design in this case saved clinician time as well as the time it would take to develop this product without the help of its end-users. In the development of this particular prototype, analysis was iterative and informed the next stage of development, which again saved time. The same applies for the feedback questionnaire for the assessment of ICT delivered aphasia rehabilitation. The co-created questionnaire, designed with people with aphasia, was ready to be used in practice [ 18 ]. This suggests that to overcome time and resource barriers to creative PPI, researchers should aim for it to be engaging whilst also producing output.

That useable products are generated during creative workshops signals to participating patients and public members that they have been listened to and their thoughts and opinions acted upon [ 23 ]. For example, the development of the back pain resource based on patient experiences implies that their suggestions were valid and valuable. Further, those who participated in the cultural animation workshop reported that the process visualises change, and that it already feels as though the process of change has started [ 19 ].

The most cost and time efficient method of creative PPI in this review is most likely the use of Facebook to gather feedback on project methodology [ 15 ]. Although there were drawbacks to this, researchers could involve more people from a range of geographical areas at little to no cost. Feedback was instantaneous and no training was required. From the perspective of the PPI group, they could interact however much or little they wish with no time commitment.

This systematic review identified four limitations and five strengths to the use of creative PPI in health and social care research. Creative PPI is time and resource intensive, can raise ethical issues and lacks generalisability. It is also not accepted by the mainstream. These factors may act as barriers to the implementation of creative PPI. However, creative PPI disrupts traditional power hierarchies and creates a safe space for taboo or mundane topics. It is also engaging, inclusive and can be time and cost efficient in the long term.

Something that became apparent during data analysis was that these are not blanket strengths and limitations of creative PPI as a whole. The umbrella term ‘creative PPI’ is broad and encapsulates a wide range of activities, ranging from music and poems to prototype development and persona-scenarios, to more simplistic things like the use of sticky notes and ordering cards. Many different activities can be deemed ‘creative’ and the strengths and limitations of one does not necessarily apply to another. For example, cultural animation takes greater effort to prepare than the use of sticky notes and sorting cards, and the use of Facebook is cheaper and wider reaching than persona development. Researchers should use their discretion and weigh up the benefits and drawbacks of each method to decide on a technique which suits the project. What might be a limitation to creative PPI in one project may not be in another. In some cases, creative PPI may not be suitable at all.

Furthermore, the choice of creative PPI method also depends on the needs and characteristics of the PPI group. Children, adults and people living with dementia or language difficulties all have different engagement needs and capabilities. This indicates that creative PPI is not one size fits all and that the most appropriate method will change depending on the composition of the group. The choice of method will also be determined by the constraints of the research project, namely time, money and the research aim. For example, if there are time constraints, then a method which yields a lot of data and requires a lot of preparation may not be appropriate. If generalisation is important, then an online method is more suitable. Together this indicates that the choice of creative PPI method is highly individualised and dependent on multiple factors.

Although the limitations discussed in this review apply to creative PPI, they are not exclusive to creative PPI. Ethical issues are a consideration within general PPI research, especially when working with more vulnerable populations, such as children or adults living with a disability. It can also be the case that traditional PPI methods lack generalisability, as people who volunteer to be part of such a group are more likely be older, middle class and retired [ 24 ]. Most research is vulnerable to this type of bias, however, it is worth noting that generalisation is not always a goal and research remains valid and meaningful in its absence. Although online methods may somewhat combat issues related to generalisability, these methods still exclude people who do not have access to the internet/technology or who choose not to use it, implying that online PPI methods may not be wholly representative of the general population. Saying this, however, the accessibility of creative PPI techniques differs from person to person, and for some, online mediums may be more accessible (for example for those with a physical disability), and for others, this might be face-to-face. To combat this, a range of methods should be implemented. Planning multiple focus group and interviews for traditional PPI is also time and resource intensive, however the extra resources required to make this creative may be even greater. Although, the rich data provided may be worth the preparation and analysis time, which is also likely to depend on the number of participants and workshop sessions required. PPI, not just creative PPI, often requires the provision of a financial incentive, refreshments, parking and accommodation, which increase costs. These, however, are imperative and non-negotiable, as they increase the accessibility of research, especially to minority and lower-income groups less likely to participate. Adequate funding is also important for co-design studies where repeated engagement is required. One barrier to implementation, which appears to be exclusive to creative methods, however, is that creative methods are not mainstream. This cannot be said for traditional PPI as this is often a mandatory part of research applications.

Regarding the strengths of creative PPI, it could be argued that most appear to be exclusive to creative methodologies. These are inclusive by nature as multiple approaches can be taken to evoke ideas from different populations - approaches that do not necessarily rely on verbal or written communication like interviews and focus groups do. Given the anonymity provided by some creative methods, such as personas, people may be more likely to discuss their personal experiences under the guise of a general end-user, which might be more difficult to maintain when an interviewer is asking an individual questions directly. Additionally, creative methods are by nature more engaging and interactive than traditional methods, although this is a blanket statement and there may be people who find the question-and-answer/group discussion format more engaging. Creative methods have also been cited to eliminate power imbalances which exist in traditional research [ 12 , 13 , 17 , 19 , 23 ]. These imbalances exist between researchers and policy makers and adolescents, adults and the community. Lastly, although this may occur to a greater extent in creative methods like prototype development, it could be suggested that PPI in general – regardless of whether it is creative - is more time and cost efficient in the long-term than not using any PPI to guide or refine the research process. It must be noted that these are observations based on the literature. To be certain these differences exist between creative and traditional methods of PPI, direct empirical evaluation of both should be conducted.

To the best of our knowledge, this is the first review to identify the strengths and limitations to creative PPI, however, similar literature has identified barriers and facilitators to PPI in general. In the context of clinical trials, recruitment difficulties were cited as a barrier, as well as finding public contributors who were free during work/school hours. Trial managers reported finding group dynamics difficult to manage and the academic environment also made some public contributors feel nervous and lacking confidence to speak. Facilitators, however, included the shared ownership of the research – something that has been identified in the current review too. In addition, planning and the provision of knowledge, information and communication were also identified as facilitators [ 25 ]. Other research on the barriers to meaningful PPI in trial oversight committees included trialist confusion or scepticism over the PPI role and the difficulties in finding PPI members who had a basic understanding of research [ 26 ]. However, it could be argued that this is not representative of the average patient or public member. The formality of oversight meetings and the technical language used also acted as a barrier, which may imply that the informal nature of creative methods and its lack of dependency on literacy skills could overcome this. Further, a review of 42 reviews on PPI in health and social care identified financial compensation, resources, training and general support as necessary to conduct PPI, much like in the current review where the resource intensiveness of creative PPI was identified as a limitation. However, others were identified too, such as recruitment and representativeness of public contributors [ 27 ]. Like in the current review, power imbalances were also noted, however this was included as both a barrier and facilitator. Collaboration seemed to diminish hierarchies but not always, as sometimes these imbalances remained between public contributors and healthcare staff, described as a ‘them and us’ culture [ 27 ]. Although these studies compliment the findings of the current review, a direct comparison cannot be made as they do not concern creative methods. However, it does suggest that some strengths and weaknesses are shared between creative and traditional methods of PPI.

Strengths and limitations of this review

Although a general definition of creative PPI exists, it was up to our discretion to decide exactly which activities were deemed as such for this review. For example, we included sorting cards, the use of interactive whiteboards and sticky notes. Other researchers may have a more or less stringent criteria. However, two reviewers were involved in this decision which aids the reliability of the included articles. Further, it may be that some of the strengths and limitations cannot fully be attributed to the creative nature of the PPI process, but rather their co-created nature, however this is hard to disentangle as the included papers involved both these aspects.

During screening, it was difficult to decide whether the article was utilising creative qualitative methodology or creative PPI , as it was often not explicitly labelled as such. Regardless, both approaches involved the public/patients refining a healthcare product/service. This implies that if this review were to be replicated, others may do it differently. This may call for greater standardisation in the reporting of the public’s involvement in research. For example, the NIHR outlines different approaches to PPI, namely “consultation”, “collaboration”, “co-production” and “user-controlled”, which each signify an increased level of public power and influence [ 28 ]. Papers with elements of PPI could use these labels to clarify the extent of public involvement, or even explicitly state that there was no PPI. Further, given our decision to include only scholarly peer-reviewed literature, it is possible that data were missed within the grey literature. Similarly, the literature search will not have identified all papers relating to different types of accessible inclusion. However, the intent of the review was to focus solely on those within the definition of creative.

This review fills a gap in the literature and helps circulate and promote the concept of creative PPI. Each stage of this review, namely screening and quality appraisal, was conducted by two independent reviewers. However, four full texts could not be accessed during the full text reading stage, meaning there are missing data that could have altered or contributed to the findings of this review.

Research recommendations

Given that creative PPI can require effort to prepare, perform and analyse, sufficient time and funding should be allocated in the research protocol to enable meaningful and continuous PPI. This is worthwhile as PPI can significantly change the research output so that it aligns closely with the needs of the group it is to benefit. Researchers should also consider prototype development as a creative PPI activity as this might reduce future time/resource constraints. Shifting from a top-down approach within research to a bottom-up can be advantageous to all stakeholders and can help move creative PPI towards the mainstream. This, however, is the collective responsibility of funding bodies, universities and researchers, as well as committees who approve research bids.

A few of the included studies used creative techniques alongside traditional methods, such as interviews, which could also be used as a hybrid method of PPI, perhaps by researchers who are unfamiliar with creative techniques or to those who wish to reap the benefits of both. Often the characteristics of the PPI group were not included, including age, gender and ethnicity. It would be useful to include such information to assess how representative the PPI group is of the population of interest.

Creative PPI is a relatively novel approach of engaging the public and patients in research and it has both advantages and disadvantages compared to more traditional methods. There are many approaches to implementing creative PPI and the choice of technique will be unique to each piece of research and is reliant on several factors. These include the age and ability of the PPI group as well as the resource limitations of the project. Each method has benefits and drawbacks, which should be considered at the protocol-writing stage. However, given adequate funding, time and planning, creative PPI is a worthwhile and engaging method of generating ideas with end-users of research – ideas which may not be otherwise generated using traditional methods.

Data availability

No datasets were generated or analysed during the current study.

Abbreviations

Critical Appraisal Skills Programme

The Joanna Briggs Institute

National Institute of Health and Care Research

Public Advisory Group

Public and Patient Involvement

Web of Science

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Acknowledgements

With thanks to the PHIRST-LIGHT public advisory group and consortium for their thoughts and contributions to the design of this work.

The research team is supported by a National Institute for Health and Care Research grant (PHIRST-LIGHT Reference NIHR 135190).

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Olivia R. Phillips and Cerian Harries share joint first authorship.

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Nottingham Centre for Public Health and Epidemiology, Lifespan and Population Health, School of Medicine, University of Nottingham, Clinical Sciences Building, City Hospital Campus, Hucknall Road, Nottingham, NG5 1PB, UK

Olivia R. Phillips, Jo Leonardi-Bee, Holly Knight & Joanne R. Morling

National Institute for Health and Care Research (NIHR) PHIRST-LIGHT, Nottingham, UK

Olivia R. Phillips, Cerian Harries, Jo Leonardi-Bee, Holly Knight, Lauren B. Sherar, Veronica Varela-Mato & Joanne R. Morling

School of Sport, Exercise and Health Sciences, Loughborough University, Epinal Way, Loughborough, Leicestershire, LE11 3TU, UK

Cerian Harries, Lauren B. Sherar & Veronica Varela-Mato

Nottingham Centre for Evidence Based Healthcare, School of Medicine, University of Nottingham, Nottingham, UK

Jo Leonardi-Bee

NIHR Nottingham Biomedical Research Centre (BRC), Nottingham University Hospitals NHS Trust, University of Nottingham, Nottingham, NG7 2UH, UK

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Author contributions: study design: ORP, CH, JRM, JLB, HK, LBS, VVM, literature searching and screening: ORP, CH, JRM, data curation: ORP, CH, analysis: ORP, CH, JRM, manuscript draft: ORP, CH, JRM, Plain English Summary: ORP, manuscript critical review and editing: ORP, CH, JRM, JLB, HK, LBS, VVM.

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Phillips, O.R., Harries, C., Leonardi-Bee, J. et al. What are the strengths and limitations to utilising creative methods in public and patient involvement in health and social care research? A qualitative systematic review. Res Involv Engagem 10 , 48 (2024). https://doi.org/10.1186/s40900-024-00580-4

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• Published: 16 May 2024

Exploring the consent process among pregnant and breastfeeding women taking part in a maternal vaccine clinical trial in Kampala, Uganda: a qualitative study

• Agnes Ssali 1 ,
• Rita Namugumya 2 ,
• Phiona Nalubega 2 ,
• Mary Kyohere 3 ,
• Janet Seeley 4   na1 &
• Kirsty Le Doare 3   na1  

BMC Medical Ethics volume  25 , Article number:  57 ( 2024 ) Cite this article

Metrics details

The involvement of pregnant women in vaccine clinical trials presents unique challenges for the informed consent process. We explored the expectations and experiences of the pregnant women, spouses/partners, health workers and stakeholders of the consent process during a Group B Streptococcus maternal vaccine trial.

We interviewed 56 participants including pregnant women taking part in the trial, women not in the trial, health workers handling the trial procedures, spouses, and community stakeholders. We conducted 13 in-depth interviews and focus group discussions with 23 women in the trial, in-depth interviews with 5 spouses, and 5 women not in the trial, key informant interviews with 5 health workers and 5 other stakeholders were undertaken.

Decision-making by a pregnant woman to join a trial was done in consultation with spouse, parents, siblings, or trusted health workers. Written study information was appreciated by all but they suggested the use of audio and visual presentation to enhance understanding. Women stressed the need to ensure that their male partners received study information before their pregnant partners joined a clinical trial. Confidentiality in research was emphasised differently by individual participants; while some emphasised it for self, others were keen to protect their family members from being exposed, for allowing them to be involved in research. However, others wanted their community participation to be acknowledged.

We found that pregnant women make decisions to join a clinical trial after consulting with close family. Our findings suggest the need for an information strategy which informs not only the pregnant woman, but also her family about the research she is invited to engage in.

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Groups are considered vulnerable in the research setting when they have a compromised ability to protect their interests and provide informed consent. Pregnant women may have agency to protect their own interests and give their own informed consent in clinical vaccine trials [ 1 ], but they are also responsible for protecting the interests of the growing foetus, who cannot consent to research or may have a unique susceptibility to risks. There are additional distinctive issues that a pregnant woman, and her family, may consider regarding the risks and benefits of participation in clinical research, resulting from the interdependence between mother and foetus. In a patriarchal system, she carries a child who is the continuation of the spouse’s blood line [ 2 ]. So, decisions about the foetus are not hers alone to make. Even though the interests of the mother and the foetus are conceptually separable, in practice, they are considered together.

Pregnancy and infancy are both periods of increased vulnerability to infection [ 3 ]. Vaccinating women during pregnancy has been shown to be effective in providing protection against several infections in pregnant women, while also providing protection for the foetus and the infant during early life [ 4 ]. Although a small number of vaccines are recommended for routine use during pregnancy, there are many vaccines that have sufficient safety data to support their use in pregnant women in appropriate circumstances [ 5 ]. Despite the benefits, a lack of vaccine confidence remains a significant barrier to vaccine uptake among pregnant women worldwide. This has been a particular challenge during the COVID-19 pandemic, which has seen low rates of vaccine uptake among this cohort [ 6 , 7 , 8 , 9 , 10 ] .

We have recently shown that in Uganda, vaccine uptake in pregnant women was influenced by the awareness of the vaccine, disease severity and susceptibility, vaccine benefits, side effects and risk of harm during pregnancy, history of previous vaccination, and recommendation from healthcare professionals [ 11 ]. We found that there was a need to include the wider community in vaccine discussions to increase confidence in existing vaccines. Communicating such information clearly is even more vital during trials of investigational vaccines. Given the benefits of the protection afforded by vaccination for pregnant women there is a growing awareness that pregnant women should be included early in clinical trials. How information on the trial is best provided is critical to vaccine confidence both for the woman herself, her family and for the wider community.

An important part of the sharing of information is the informed consent process. Many factors can influence a research participant’s understanding and experience of the information provided, such as the type of study, the cultural setting, local beliefs and customs, as well as the participant’s language, religion, level of education, and socio-economic status [ 12 ]. In a maternal vaccine trial, women in different socioeconomic situations and with different health-care experiences may have very different information needs about the disease that the vaccine is protecting against and the safety and efficacy of the vaccine [ 13 ].

As noted above, a pregnant woman is not necessarily the sole decision-maker for matters affecting the foetus she carries. While care should be taken to ensure that decision-making about participation in a trial does not undermine the autonomy of pregnant women, not planning for third-party consent could be a major encumbrance for research. In this study we explored the expectations and experiences of pregnant women of the consent process in Uganda. We also explored the attitudes and experiences of health workers and partners/spouses of the women and other community stakeholders. Our aim was to learn what information is required during the consenting process and in what format, to allow pregnant women and their family, to make informed decisions before joining a clinical trial.

Methodology

Study design.

This cross sectional exploratory qualitative study was embedded in an ongoing maternal vaccine clinical trial (CTA 0212) conducted by Makerere John Hopkins University Uganda limited (MUJHU) in Kampala, Uganda.

The clinical trial in which the study was conducted was a phase II study of a multivalent vaccine against the Group B streptococcus (GBS) capular polysaccharide (CPS) in pregnant HIV-infected and uninfected women. For the trial women were enrolled from two main health facilities, Kawempe national referral hospital and Kisenyi health centre IV located in the Centre of Kampala city (the study details are available at https://clinicaltrials.gov/study/NCT04653948?locStr=Uganda&country=Uganda&term=maternal%20vaccine&rank=2 ).

The study was conducted at Kawempe specialised national referral hospital for gynaecology and obstetrics. It is located within 4 km from the city centre in one of the administrative divisions of Kampala city. The division has several neighbouring communities including Mulago, Kamwokya, Komamboga, as well as Kawempe where most of the stakeholders interviewed lived. The hospital receives women from all over the country who may be referred, as well as serving nearby communities.

Theoretical background to the sampling

The theoretical underpinning used in this study is the socio ecological model of health [ 14 , 15 ]. The model portrays the relational influences on an individual showing how the family and wider society may impact on an individual’s actions and decisions [ 16 ]. In this study we view the woman as being influenced by her close family relations, the family belongs to a community which has cultural beliefs and social norms. In this study the women could legally make their decisions from the age of 18 years; however, because they were pregnant, the decision to enrol in a maternal vaccine trial was influenced by others, notably their family.

Recruitment

Pregnant women were recruited from the hospital after administrative permission and individual consent had been obtained. Pregnant women who were taking part in the Group B Streptococcus vaccine trials were approached following contact from the clinic research team. Interested participants were contacted by the social scientists by phone and were informed about the study and requested to come to the hospital for detailed information during their follow up visits at the antenatal clinic. The social science researcher identified pregnant women already enrolled in the trial who were returning for their second follow up visit at the clinic. Some were pregnant while for others it was a post-natal visit. These visits did not include extensive clinical procedures and therefore allowed time for the interviews or discussion.

The inclusion criteria for this qualitative study were any pregnant woman aged 18–39 years at any gestation who was taking part in a maternal vaccine trial conducted by MU-JHU and willing to give consent to take part. The study also included breast feeding women in the same age bracket who was taking part in follow up of the trial. The social science team purposively sampled the pregnant women and breast-feeding women in different age brackets (18–24 years, 25–32 years, 33–39 years) from the lists provided by the data management team.

An additional group of women attending the same antenatal clinic at the referral hospital who were not in the clinical trial but had similar characteristics as those outlined in the clinical trial inclusion criteria, and willing to give consent were invited to participate in an interview. These women were purposely selected from those attending the antenatal visit to match the age of women in the trial 18–39 years. They were recruited through the antenatal clinic staff. A midwife introduced the qualitative study’s main objective and requested the women interested in discussing the study in detail to meet with the social scientists. The social scientists shared the details of the qualitative study and women who were willing to join and sign a consent form were invited to take part. The women were interviewed in a private area in the hospital space.

Partners to women were recruited with the support of their wives. The social scientists obtained the partners’ contacts from the wives and contacted them by phone and invited them to take part in the study after giving written informed consent. The partners were free to suggest their preferred location for the interview.

Community stakeholders were mobilized with the support of a Community Advisory Board (CAB) member. The CAB member provided the research team with contact information for the stakeholders, who were drawn from community leadership structures, and included political, cultural, religious, and civic leaders. They were contacted by phone by the social scientists and later visited for a discussion of the participant information document. The stakeholders were interviewed at the time and place of their choosing after giving consent. The research ethics committee member was purposely contacted and invited to take part in the study.

The social science team purposely approached healthcare workers who were involved in the trial processes and requested their participation in the study. The health care workers were selected because they obtained consent from the women, made home visits to the participants, did the vaccination procedure, and offered treatment and care for the participants.

Data collection

Data collection took place from October 2022 to Feb 2023. The women in the trial either took part in a semi-structured Individual Interview (IDI) or a Focus Group Discussion (FGD). In-depth interviews were conducted to explore individual real-life experiences of the women. FGD were conducted among the women to explore the general community experiences of the informed consent process for maternal vaccines. The women who took part in the in-depth interviews did not take part in the FGDs. All the women were aged between 18 and 49 years. Insights from the stakeholders who included spouses, community leaders and health workers were gathered through in-depth interviews. By asking the different groups of respondents the same research questions we were able to explore the research questions from different perspectives [ 17 ].

Verbal permission to audio record the interviews was requested before conducting the interview. The interview guide for the IDI and FGD topic guide (see Supplementary File 1 ) included topics that included antenatal visit experiences, knowledge of vaccines in general and the specific vaccine they received, barriers and facilitators for taking part in the clinical trial, what the consent process involved, study information shared with them and the format of presentation, and decision making to join a clinical vaccine trial. The individual IDI lasted between 30 and 60 min. The FGDs lasted between 60 and 90 min. The interviews were conducted by two female social scientists. The FGDs were conducted by three female social scientists with one as an observer. The individual interviews and FGDs were conducted in English and Luganda languages depending on the preferred language of the individual and group. The interviews with women in and not in the trial were conducted in a private space at the hospital. The FGDs were conducted within the hospital in large office spaces. During the FGDs, participants were served a soft drink and a snack.

Stakeholders chose the place where the interview was held, some came to the hospital premises, while others were interviewed in their communities. The health workers were interviewed at the study offices at Mulago hospital and Kawempe referral hospital. The interviews with the stakeholders and health workers lasted between 30 and 50 min The first author listened to a sample of audio-recordings throughout the study to follow up and discuss probes and emerging findings during weekly debriefing sessions.

Data management and analysis

Once a participant was interviewed and after an FGD had been conducted, the recording was uploaded on an encrypted computer. The two social scientists who collected the data did the transcribing and translation. Luganda transcripts were translated and transcribed by the same social scientist into English because the research team members were all conversant with both languages and had skill to do this. The two social scientists transcribed each other’s interview so that they transcribed an interview they did not conduct. This was helpful in generating questions to ask each other about the findings, check reliability and improve interviewing skills throughout the duration of data collection. Listening to each other’s recording and the lead researcher listening to the recordings led to the writing of analytical memos on the themes from the data, which were useful during analysis.

All the transcripts were anonymized. Identification numbers were assigned to every transcript, and these were securely saved on the MRC server in Entebbe.

Thematic data analysis was employed for this study [ 18 ]. The team started with familiarizing themselves with the data by going through several transcripts each, and actively looking for patterns from the data which led to codes and they compiled a code book which was then used to code all the data sets. During the analysis, the team began by discussing the first five transcripts to come up with codes for the data set, this was a continuous process after the first five transcripts until the team members agreed that no unique codes were emerging. The discussion of codes followed the questions in the interview guides, the research team agreed to code freely to allow for topics which emerged during the interview.

After developing the codes and the codebook, data were exported to NVivo 12 an electronic qualitative data analysis software to support the analysis process. Data analysis was both deductive following the questions in the topic guides and inductive from within the data. The themes identified include: perceptions about vaccines in general, perceptions of the vaccine used in the overarching clinical trial, experiences at the antenatal clinic, decision making, barriers and facilitators to enroll in a maternal clinical trial and discussion of the elements of the consent process (study information and presentation, role of an impartial witness, confidentiality, compensation, and strategies for information sharing).

Ethics approval and consent

After mobilizing the study participants, the research team provided detailed information in English or Luganda, the local language, depending on the language preferred by the participant. Participants were given an opportunity to ask questions about the planned study. All the participants gave their individual informed consent by giving written consent. If a participant was not able to read and write, the researchers involved a peer attending at the clinic on the same day, or male partner if he had escorted his wife to the clinic and could read and write. The partner or peer were part of the information sharing session and the peer or partner signed as a witness after the volunteering participant had given a thumb print.

The quotations are assigned identifiers, FGD/IDI for mode of data collection. For each FGD we then provide, its number, and age of participants. WIT is an abbreviation for `Women In Trial’, WNT is `Women Not in the Trial’. IDIs are shown by the participant identifier and age.

Fifty-six respondents took part in this study, these included thirty-six pregnant or breastfeeding women, 5 women not in the trial, 5 partners to women in the trial, 5 health workers (1 male, 4 female) and 5 community stakeholders (2 male, 3 female). The pregnant and breast-feeding women were aged 18–39 years although most were aged below 25 years. Male partners were older, aged 30–49 years. The stakeholders were aged between 30 and 50 years.

All the participants had some school education. Occupations of the women included farming, small businesses such as hair salons, and some women said that they were `housewives’. The stakeholders were leaders in their communities, one of whom was a practicing health worker. The demographic information of those who took part is shown in Table  1 .

Health workers were aged 28–33 years, they had experience of conducting maternal clinical trials for a duration of between 2 and 4 years. The health workers had attained diploma and degree level qualifications.

The consenting process

For most pregnant women the decision to join the trial involved the husband as a prerequisite to joining because she was carrying the pregnancy of the male partner. All the women reported how they were informed about the research and said that they were usually given a week to discuss the study document with their family members. A woman taking part in a focus group discussion:

The time they gave me the study information, my husband was working in a far place so I could not consent on my own. They gave me information sheets that I went with at with home. When my husband came back, I showed him the sheets and later he allowed me to participate. (FGD-002- [30–35 years]-WIT).

Another woman in another discussion said she had made the decision herself, after receiving additional information:

For me, like I told you that the first time I came I did not understand, I came back again, and they explained then I understood and decided to join, for me, l asked my heart. (FGD-003- [25–29 years] -WIT).

During an interview a woman, who was not in the trial, explained the rationale for seeking her partner’s consent to take part:

I would follow his opinion because I might be wrong, if we both agree there would not be any problems, but if he disagreed, I would follow what he[husband] says. Because I’m his responsibility, that’s why if I talk to him about it and he says no, I can’t do otherwise, his opinion is very important in my decision making. (IDI-004-WNT).

The health workers’ responses were similar to what the women had shared, the health workers emphasised the importance of sharing key study information and letting the women share study information with their networks such as partners/husbands.

Other stakeholders observed that informing partners was important. A village health team member commented that they thought that: ‘ Most pregnant women don’t disclose to their husbands that they are participating in clinical trials. When their partner finds out that they are participating in clinical trials, it may lead to domestic violence . ’

Most pregnant women consented to take part in the trial for the benefit of themselves and their unborn child. The women had the belief that they would give birth to healthy babies without infections, an example, ‘Because I saw that, the way they explained the vaccination just like I told you my baby and I were going to be safe’. (IDI- -002-WIT).

When asked about the consent procedure many respondents mentioned risks and benefits of the study, purpose of the study, side effects of the vaccine and what may happen if a participant wanted to withdraw from the research, as being very important pieces of information that every participant needed to know.

A male participant mentioned the need to present information about safety:

I would like to know the information on the safety of that research. I would prefer hearing information like “a certain number of pregnant women participated in this research and both mother and baby are all safe.” That kind of information must be approved by the Ministry of Health. (IDI- -001-MALE PARTNER).

There was a consensus among those interviewed, and in the discussion groups, that the information shared needed to be clear, and free from technical language. In addition, the information needed to be given by someone who understood the trial and who could answer any questions.

All the respondents stressed that participants in research must sign the consent form because it was to prove they understood the information and willingly consented to take part: ‘ It shows proof that you consented to take part in the study without being forced. Signing means that you agreed to take part without being forced’ . (FGD-001-[18–24 years]-WIT).

The women in the trial commented that providing consent is not uncommon in most transactions. One woman compared the process to the savings associations in their communities where a woman agrees to the terms of that group, when she becomes a member. She went on to explain why signing the consent form is important in research:

They [research participants] might get a challenge from elsewhere and they accuse the researchers saying “they even forced me to join the study” but if they completed that consent form and signed it very well, the researchers have proof and evidence on their side that that person agreed to take part and even signed the document, that is why we sign on those documents. (FGD-001-[18-24years]-WIT).

Several women who by now had babies reported that they had referred back to the information documents during the trial especially for procedures that had to be carried out on their babies. During the FGD with older women one woman noted that she had kept the study information document with her every time she visited the clinic:

For me I used to come with it in my bag every time I had a visit, I used to take my time reading it while waiting to see the doctors, it helped me follow through very well, I could tell that this is what they are doing at this stage, just to prove that what they are doing is what they taught me at the beginning . (FGD-002- [30-35years]-WIT).

Another mother referred to the document because she was being told to express breast milk:

For me when they told me to extract breast milk the very first time in the study, I asked the doctor why they were taking my breast milk, the doctor told me that all that information was explained to me during the information session before I joined the study… in brief that forced me to go back and look critically at the copy they gave me here, that’s how I understood that its true they had to collect breast milk on the first day I gave birth. (FGD-002- [30–35 years]-WIT).

A blood draw from the baby led another mother to refer to the study document:

I read it several times when they had just given it to me, then I kept it somewhere safe, I had seen everything even collection of breast milk on the first day, but what I didn’t see, was collecting blood from my baby, after two weeks they tell us to bring the baby and they take off a blood sample from their little hand, that really hurt me and I thought to myself ‘why do they take off all that blood from such a little baby’, I was puzzled; I went back and picked the paper and read it carefully to see whether it was in that paper, I found the information there and understood why the doctors did it. (FGD-002-[30–35 years]-WIT).

It was clear that many trial participants understood the significance of signing the consent form, as well as the importance of retaining the information sheet for future reference.

Comprehension of study information

The respondents were asked about the best practice for sharing study information. They mentioned several tools or ways that would enhance comprehension of clinical trial information. These included the use of short video clips, picture/poster presentation, recorded audio study information, study flyers and the use of trial participants providing study information with each other. They also suggested the use of media which may include radio and television and social media communication like Facebook and WhatsApp which could enhance understanding for both the literate and less illiterate participants.

The following FGD excerpt shows some suggestions from women aged 18–24 years:

P1: … If you also share comparisons of the women who get vaccinated and those who don’t get vaccinated, it can make the woman make an informed decision . P5: I think broad casting that information on a TV is beneficial. When a woman reaches the hospital, she can be watching that information on the TV before the health workers attend to her. P8: Most information now is passed on phone and TV. I think you can get a program on any media platform and share such information. Even when you come at the hospital, you can put up a billboard where you can put such information.

In an older age discussion group one woman commented:

Remember there are some of us who have good experience about this [vaccination], I think it can be very good if we share with other women and help them decide. You can also do that in the different villages, on different radio programmes, remember people listen to these radios, they can find this information there, and create awareness in the communities. (FGD-[30–35 years]-WIT).

Use of posters/photographs was mentioned by some women: `… yes, the photos can inform a person and the health care worker will explain to you where you don’t understand’ (IDI-002-WIT). A health worker also mentioned the value of visual methods:

You can use posters, use visual aids with the pictures of what you are trying to explain to them, because this person is not able to read, but they can see that the pictures are directing them to do this and that, so that they can understand, with arrows and different directions, I don’t know how to clearly explain but what I know is that this can really help. (KII-001- HEALTH WORKER).

Pictures on the information sheet were also suggested by a health worker:

We could draw some pictures on a sheet of paper may be as part of the information sheet (ICF) at the end, we include the benefits of participation in the study, we draw pictures of the baby being protected against the effects of the Group B Streptococcus infection, I think participants may be able to see the pictures and understand the information compared to the words they can’t read. (KII-004-HEALTH WORKER).

The same health worker mentioned the use of short video clips to enhance comprehension:

For the mother who can’t read and write we can put up short videos, because even if a mother can’t read and write but there is a short video that she is able to watch, I think it’s better for them instead of giving them an ICF which they can’t read, if it’s a video they can watch and understand the information being shared. (KII-004-HEALTH WORKER).

Sharing recorded study information using phones since many women now own phones, was also suggested.

Role of an impartial witness

We asked respondents to share their perspectives on the role of an impartial witness during the consenting process. The impartial witness, according to our study findings, was viewed by most respondents as a legal requirement to protect the person being researched and the researcher.

One woman during a FGD said that presence of an impartial witness benefited the researcher:

I think the witness is important in cases where that person who signed or put their fingerprint in agreement to participate in the study initially, later changes their mind about anything against the initial, they can ask the witness because they were around when that person agreed to participate in the study, and they can give evidence that that person was not forced to sign on that document. (FGD-002-[30–35 years]-WIT).

However, some participants did not think it was necessary to have a witness. They said that a witness may not always be reliable. To these women, understanding information is not limited to reading and writing by the volunteer. An example that was compared to bank transactions emphasizes the need for autonomy once a volunteer understands the language that is being used:

Many times, we go to the banks to sign documents with people who cannot write but there is an option of putting a thumb print. I think a witness can even reach a point and deny that she signed on your behalf. According to me, a witness is not important. (FGD-003-[25–29 years]-WIT).

The women in that discussion group went on to note that the independence and privacy of someone who does not read but understands what is read should be respected. ‘ Some things need to be hidden. I may have my own secrets that don’t require me to be with a witness during the consenting process’.

Finding the impartial witness is not always easy in some contexts and that would mean that an interested volunteer who understood the information shared would not enrol in the research:

…, getting a suitable witness is not easy, sometimes we use hospital staff, remember they also have things to do yet going to pull her out of their work for one hour, just to sit and listen to you. I think what we can do for some of those cases is we can give them some time to go home and look through that information, and if they have someone at home who is literate, they can even ask them for help, then when they come back it would be a quicker process for them. (KII-005 HEALTH WORKER).

The stakeholders and male partners had similar descriptions of a witness to those shared by most women, a witness was to prove that a study participant agreed to take part in a research study.

Compensation of study participants

Compensation for time is another important aspect of the informed consent process. Whereas most participants reported that it was important to compensate research participants, how research participants were to be compensated varied. The women reported they needed the money to help them in travel and they would use some of it to cater for some of their needs back home. For some women it was a reason to stay in the study.

The male partners felt it was important to compensate the women that participate in this research and mentioned it is an additional incentive to encourage retention. There was also the suggestion to give goods as part of the compensation package: ’Apart from giving them cash, you can buy some items for the baby or some home necessities like you do some shopping for the family like food that is necessary for the woman after giving birth’ . (IDI-004-MALE PARTNER).

Other suggestions from the male partners included the need to consider the distance between the study site and the participant’s home before determining transport reimbursement costs, consider that the transport costs fluctuate and therefore researchers should arrange to increase reimbursement accordingly. Men mentioned that when women stay for a long time at the clinic during the clinic visits, they need to be provided with a meal or something to eat.

The health workers reported that compensating for transport costs and time were important to encourage women to attend the frequent visits to the clinic.

Confidentiality

Women were asked what they understood about confidentiality in research. Some participants in an FGD defined confidentiality in terms of secrecy so that community members never got to know about their involvement in research.

I think confidentiality means, keeping my secret about participating so that am not despised for people to say that am like a rat they use to test drugs, because that’s how people perceive it, yet they don’t know that it’s to benefit every pregnant woman. (FGD-002- [30–35 year] - WIT).

For others, it was keeping a secret and not sharing information beyond the two people - researcher and volunteer. Others said that you could share the information without identifying the person:

The identification numbers they give to us are the ones that help us to remain confidential, that the information we give, even if it goes public, it not easy to know that this and such a person is the one who gave out the information. (IDI- 003-WIT).

A male partner said he did not care what they shared if they did not include sensitive information about family:

I don’t think confidentiality is necessary, I don’t think there is any information I want to hide, am so free even if my name is mentioned in public, especially if I know that I don’t have any crime, the only thing I mind about is protecting my family, so they can put my name anywhere, but they shouldn’t put other details like my wife’s name and children. (IDI-004-MALE PARTNER).

One of the stakeholders mentioned the importance of volunteers’ contributions to the research being included:

I agree that all the information shared by the participants should be kept confidential, what I mean is no one should be able to identify that these particular views came from the woman leader or attaching our names on views because, this means that we shall be identified, however you can just say that these views are from the leaders of Kawempe in general so that we don’t miss out on sharing our views with you. (IDI-004-STAKEHOLDER).

Involving family members in decision-making

Most women said that they accepted to join the vaccine trial after consulting their spouses before a final decision to join:

When I accepted, I went back and explained to my husband about the research, and he also advised me that it was a good thing being part because he had a friend whose wife has participated in a research study. When I agreed to join the study, I took the consent form for him to read and after he read through, he told me to continue in the study because it was good. (FGD-001-[18–24 years]-WIT).

Women reported accountability to spouses, one woman took pictures of the information document and sent them through social media (WhatsApp) for him to read before she gave consent.

Some women informed their spouse but also went on to inform their close relatives like their mother before they decided to join the vaccine trial.

The truth is I did not accept to join that very day, they taught and explained everything, I understood very well but I told the health worker that I will come back, I had to ask my husband, … I went and also told my mother about it and she said most of the medicines they make first go through such trials, even the current vaccines were tested so she gave me a go ahead (FGD-002-[30-35years]-WIT).

The fear of consequences in the marriage if a woman did not inform the spouse was highlighted by one of the women:

‘I think its important [to engage a partner] because I don’t want to create misunderstandings within the family, I want a peaceful marriage, because If anything happens to the baby, I am answerable’. (IDI-012-WIT).

One woman who was not in the trial mentioned the challenge to autonomy caused by the cultural context if a woman wanted to take part in a trial, because a husband might not grant his permission for something a woman may be very keen to do.

Our findings show that some men would seek advice elsewhere before they made a final decision about their family’s health. One spouse said,

“I told my mother, and she was not happy with my wife accepting to participate, my friend is the one who encouraged me because she told me, she was also once involved in research at Mulago when she was pregnant for her twins and the children are very healthy up-to today they are now seven years. They had to first convince me, at first l had refused.” (IDI-003-MALE PARTNER).

A stakeholder mentioned the importance of culture, but they also mentioned economic dependence of some women on men and therefore advised that men should be informed about research in which their wives will participate.

In our country setting men are the heads of the families and they are responsible for taking care of the homes, women on the other hand are home makers and most of them don’t work, they depend on their husbands for all their financial needs and men take care of them, therefore it is hard for these women to do anything without involving their husbands, it’s very important to involve these men, when doing research. (IDI-005-STAKEHOLDER).

Our findings indicate that while many women felt able to decide on participation in the trial, including seeking more information and clarifications, they were also conscious that they needed agreement from their partners. The men we consulted valued the opportunity to be given information on a trial their pregnant partner may take part in and be part of the decision-making.

The findings of our study show the importance of giving enough time to potential volunteers to reflect and contact their relatives and key stakeholders in their decision-making process. Pregnant women are a special group because they consent for themselves and for their babies. The family and community support systems need to be engaged when sharing research study information, particularly involve male partners because they are usually the heads of the households and source of livelihood for the pregnant women.

Although some women mentioned that they made their own decision to join for the clinical trial, the majority of the women joined the trial after consulting the male partners who were the fathers of the children to be born. Involving men in the information sharing process remains critical for retention during maternal vaccine clinical trials and creating an environment at the hospitals that would encourage their involvement has been suggested in other studies conducted in Uganda [ 11 , 19 ]. Most cultures in Uganda follow a patrilineal system and most households are headed by men, and this impacts on how health decisions maybe made by some women [ 20 ].

The women we spoke to were concerned about the safety of their baby and this is one reason why they valued the detailed information given to them and referred to the information documents given to them at the time of consent. Similar concerns about safety of the baby have been reported in other studies [ 11 , 21 ].

Our findings showed that less literate volunteers can understand study information if it is presented in their local or language they best comprehend. Similar findings have been reported that volunteers who may not be able to read and write, do understand information conveyed in their language or the language they understand and do not think they need a witness to confirm their consent [ 12 ].

Compensation for time and inconvenience to the participant is required but how to compensate is challenging. Providing food and transport costs are seen as beneficial for participation. A study conducted among participants in an HIV vaccine trial reported that some participants reported that they could stay at the clinic longer because of the meals they were receiving [ 22 ]. Another study that followed up phase 1 clinical trials revealed that volunteers may think that they can earn a lot from taking part in clinical trials, and take part because of that, which raises the issue of undue inducement [ 23 ]. It has also been reported that participants enrolled to join clinical trials for the health and wellbeing benefits as well as providing a way of meeting with peers [ 24 ].

In addition, research teams need to ensure study information is shared in a form appropriate for volunteers in each context to enhance comprehension of study procedures especially if the participants may not be literate.

Participants while discussing best practice to enhance comprehension, mentioned video clips, pictures, poster, and media as useful tools. Previous research has made comparisons between the standard consent document, messaging and videos showing that although there was no significant difference in the three models, the volunteers liked the visual methods which helped them retain information better [ 25 ]. Besides the digital and manual tools, peer to peer sharing was noted in our study as a possible strategy to increase comprehension and trust in the vaccine studies. Future maternal clinical trials could adopt a similar strategy to involve women who have taken part in concluded maternal vaccine trials to convey information at different phases of a trial to support the consent process. Getting men to discuss vaccine trial information for pregnant women in this context and similar contexts may reduce suspicion about the women’s participation in a trial. The stakeholders included influential leaders in the community, leaders who may influence decisions about research and healthcare workers. In this study we had only one representative from the ethics committee. In future studies it is useful to involve ethics committee members to discuss the ethics of male involvement in the decision-making path of their pregnant partners who join clinical trials.

Study limitations

The study was conducted in one hospital in the city which is not fully representative of all the pregnant women and stakeholders especially those in the rural communities. However, this is the national referral hospital for pregnant women, and we included women who did not necessarily live in the city but also lived in suburbs and nearby districts to Kampala. We also had very few stakeholders who took part to discuss their insights although we got useful pointers to community engagement.

We found that pregnant women make decisions to join a clinical trial after consulting with close family. Our findings suggest the need for an information strategy which ensures the continuous sharing of study procedures throughout the course of any clinical trial to increase comprehension. It is important that this information sharing is not only for the pregnant woman, but also her family, particularly the partners of potential participants, so that they are consulted and informed in a way that promotes understanding. Getting stakeholders and policy makers at the national level to discuss challenges that pregnant women face while making decisions to take part in clinical trials would benefit future clinical trials.

Data availability

The data that supports the findings of this study are available from the corresponding author’s institution. The data are however, available from the authors upon reasonable request.

Abbreviations

In-depth Interview

Focus Group Discussion

Women in Trial

Women Not in Trial

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The study was funded through the training department at the MRC/UVRI and LSHTM Uganda Research Unit which is jointly funded by the UK Medical Research Council (MRC) part of UK Research and Innovation (UKRI) and the UK Foreign, Commonwealth and Development Office (FCDO) under the MRC/FCDO Concordat agreement and is also part of the EDCTP2 programme supported by the European Union. The clinical trial was conducted by Makerere University John Hopkins University and is sponsored by St George’s University of London through the EDCTP2 programme supported by the European Union.

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Janet Seeley and Kirsty Le Doare contributed equally to this work.

Authors and Affiliations

Medical Research Council/Uganda Virus Research Institute & London School of Hygiene and Tropical Medicine Uganda Research Unit, Entebbe, Uganda

Agnes Ssali

Makerere University -John Hopkins University Research Collaboration, Kampala, Uganda

Rita Namugumya & Phiona Nalubega

St George’s, University of London, London, UK

Mary Kyohere & Kirsty Le Doare

London School of Hygiene and Tropical Medicine, London, UK

Janet Seeley

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Contributions

A.S conceptualised the study with support from K.L and J.S, study design, data collection, analysis, and interpretation, and wrote the manuscript. R.N and P.N conducted data collection, recruitment, data analysis, interpretation and contributed to writing. M.K. contributed to trial design, recruitment process and contributed to writing. K.L contributed to the clinical trial design, editing and critical appraisal of manuscript J.S contributed to concept, study design, editing and critical appraisal of manuscript.All authors reviewed the manuscript.

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Correspondence to Agnes Ssali .

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Participation in the qualitative study was voluntary. Potential participants were recruited from a public health facility after permission had been sought from the hospital administration. Study information was shared with each individual before they gave their consent to take part. The study was approved by the Makerere University school of medicine Research and ethics committee Mak-SOMREC-2022-331), approved by the national regulatory body-Uganda National Council for Science and Technology (SS1278ES-UNCST) and the London School and Tropical Hygiene Research and ethics committee (28257-LSHTM). The research team signed a confidentiality agreement.

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Ssali, A., Namugumya, R., Nalubega, P. et al. Exploring the consent process among pregnant and breastfeeding women taking part in a maternal vaccine clinical trial in Kampala, Uganda: a qualitative study. BMC Med Ethics 25 , 57 (2024). https://doi.org/10.1186/s12910-024-01055-7

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“ We might not have been in hospital, but we were frontline workers in the community ”: a qualitative study exploring unmet need and local community-based responses for marginalised groups in Greater Manchester during the COVID-19 pandemic

• Stephanie Gillibrand 1 ,
• Ruth Watkinson 2 ,
• Melissa Surgey 2 ,
• Basma Issa 3 &
• Caroline Sanders 2 , 4  

BMC Health Services Research volume  24 , Article number:  621 ( 2024 ) Cite this article

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The response to the COVID-19 pandemic saw a significant increase in demand for the voluntary, community, faith and social enterprise (VCFSE) sector to provide support to local communities. In Greater Manchester (GM), the VCFSE sector and informal networks provided health and wellbeing support in multiple ways, culminating in its crucial supportive role in the provision of the COVID-19 vaccination rollout across the GM city region. However, the support provided by the VCFSE sector during the pandemic remains under-recognised. The aims of the study were to: understand the views and experiences of marginalised communities in GM during the COVID-19 pandemic; explore how community engagement initiatives played a role during the pandemic and vaccine rollout; assess what can be learnt from the work of key stakeholders (community members, VCFSEs, health-system stakeholders) for future health research and service delivery.

The co-designed study utilised a participatory approach throughout and was co-produced with a Community Research Advisory Group (CRAG). Focus groups and semi-structured interviews were conducted remotely between September-November 2021, with 35 participants from local marginalised communities, health and care system stakeholders and VCFSE representatives. Thematic framework analysis was used to analyse the data.

Local communities in GM were not supported sufficiently by mainstream services during the course of the COVID-19 pandemic, resulting in increased pressure onto the VCFSE sector to respond to local communities’ need. Community-based approaches were deemed crucial to the success of the vaccination drive and in providing support to local communities more generally during the pandemic, whereby such approaches were in a unique position to reach members of diverse communities to boost uptake of the vaccine. Despite this, the support delivered by the VCFSE sector remains under-recognised and under-valued by the health system and decision-makers.

Conclusions

A number of challenges associated with collaborative working were experienced by the VSCE sector and health system in delivering the vaccination programme in partnership with the VCFSE sector. There is a need to create a broader, more inclusive health system which allows and promotes inter-sectoral working. Flexibility and adaptability in ongoing and future service delivery should be championed for greater cross-sector working.

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The response to the COVID-19 pandemic saw a significant increase in demand for the voluntary, community, faith and social enterprise (VCFSE) sector to provide support to local communities [ 1 , 2 ]. The role of communities was seen as crucial to supporting the pandemic response, to better mobilise public health pandemic responses and supportive health services [ 3 ]. VCFSE organisations nationally had to quickly mobilise to adapt their service offer to meet increased demand, new gaps in service provision and deliver services in different ways to address the challenges faced by local communities. These included loss of income and financial hardship, closure of schools and childcare, increased social isolation, digital exclusion, and increased mental health issues [ 4 ]. However, previous research has concluded that support provided by the voluntary sector during the pandemic has been under-recognised [ 5 ]. Some authors have explored the role that VCFSEs played at the national level, in supporting communities during the pandemic [ 4 , 5 , 6 ]. Yet, whilst it is well-known that tens of thousands of UK volunteers supported local vaccine delivery [ 7 ], no existing academic literature has explored the role of VCFSEs in supporting the vaccination rollout.

We focus on Greater Manchester (GM), where increased support from VCFSE organisations, including smaller, community-based networks, responded to increased demand from local communities and the NHS to provide key health and wellbeing-related services, including food and care packages for clinically vulnerable households, food bank services, support for people experiencing homelessness, mental health and domestic violence services and support to local community organisations [ 8 ]. This support culminated in the sector’s supportive role in the delivery of the COVID-19 vaccination rollout, in response to the need for mass immunisation across the region.

Over the last decade, the English health and care system has been evolving to integrate health and social care. A key focus is building closer working relationships between the NHS, local authorities and other providers– including the VCFSE sector– to deliver joined up care for communities [ 9 , 10 ]. To aid integration, a new model for organising health and care on different geographical footprints has been developed: Integrated Care Systems (ICSs), place-based partnerships and neighbourhood models. These collaborative partnerships bring together existing health and care organisations to coordinate health and care planning and delivery in a more integrated way and include councils, NHS provider trusts, Primary Care Networks, GP federations and health and care commissioners [ 11 ]. These new geographically-based partnerships have an emphasis on collaborative working beyond traditional health and care partners. This includes acknowledging the role that VCFSE organisations can have in supporting wider population wellbeing, particularly as part of multi-disciplinary neighbourhood teams embedded in local communities [ 12 ]. National guidance on the development of ICSs and place-based partnerships strongly encourages health and care leaders to include VCFSE organisations in partnership arrangements and embed them into service delivery [ 12 ]. In GM, the partnership working approach pre-dates the formal mandating of ICSs, with a combined authority which brings together the ten local authorities and an association of Clinical Commissioning Groups (CCGs) which represented health commissioners, and a VCFSE umbrella group which also operates as a joint venture to represent the sector’s interests at a GM level Footnote 1 . However, reorganisation to the ICS system may present new local challenges for the VCFSE sector to find a meaningful ‘seat at the table’. That withstanding, the COVID-19 pandemic coincided with the development of ICSs and place-based partnerships as arguably one of the earliest and most intense tests of partnership working across health and care organisations within the current policy landscape.

Here, we present findings from a co-designed qualitative research project, drawing on insights from 35 participants, including members of diverse communities in GM, VCFSE participants, and key decision-making health and care system stakeholders. The aims of the study were to: understand the views and experiences of marginalised communities in GM during the COVID-19 pandemic; explore how community engagement initiatives played a role during the pandemic and vaccine rollout; assess what can be learnt from the work of key stakeholders (including community members, VCFSEs, health and care system stakeholders) for future health research and service delivery. The rationale for the study developed from a related piece of work assessing inequalities in the COVID-19 vaccine uptake in GM [ 13 ]. At that time, there was little research on the experiences of under-served communities during the pandemic. As such, the public and stakeholder engagement for the related project identified a need for a qualitative workstream to explore more fully the drivers behind and context surrounding the vaccination programme in GM, centring also local communities’ experiences during the pandemic (explored in a related paper [ 14 ]).

In this paper, we examine the role the VCFSE sector played in supporting unmet needs for marginalised groups in GM during the COVID-19 pandemic and as part of the rapid rollout of the COVID-19 vaccination programme. We consider the opportunities and barriers that may influence the full integration of the VCFSE sector into health and care services in the future. This paper provides additional evidence around the role of local community-led support in the context of identified unmet needs from marginalised local communities. Whilst focused on GM, it provides an exemplar of the role of VCFSEs and community networks during the pandemic, with relevant learning for other regions and international settings with place-based partnerships.

Study design

The study utilised a participatory approach throughout and was co-designed and co-produced with a diverse Community Research Advisory Group (CRAG). The CRAG were members of local community groups who were disproportionately impacted by the COVID-19 pandemic, including one member who is a co-author on this paper. This included members of three VCFSE organisations working with specific ethnic minority communities including Caribbean and African, South Asian and Syrian communities.

CRAG members acted as champions for the research, supporting design of appropriate information and fostering connections for recruitment via their existing community networks. The strong partnerships built through our approach were crucial to enabling a sense of trust and legitimacy for the research amongst underserved communities invited to participate.

Interviews and focus groups took place between September-November 2021 and sought to explore: the context surrounding the rollout of the vaccination programme; key aspects of support delivered as part of the vaccination programme; the use of localised approaches to support vaccine delivery including engagement initiatives, as well as broader community-level responses to the COVID-19 pandemic; perceptions around barriers to vaccine uptake Footnote 2 ; experiences of local communities (including healthcare) during the pandemic Footnote 3 . During the data collection period, national pandemic restrictions were largely lifted with no restrictions on social distancing or limits to gatherings, and all public venues reopened. A self-isolation period of 10 days after a positive COVID-19 test remained a legal requirement, but self-isolation after contact with a positive case was not required if fully vaccinated [ 15 ]. By July 2021, every UK adult had been offered their first dose of the COVID-19 vaccine, with every adult offered both doses by mid-September 2021 [ 16 ]. By early September 2021, more than 92 million doses had been administered in the UK [ 15 ].

Interviews and focus groups were conducted by one member of the research team (SG) and were conducted remotely due to the pandemic, via Zoom and telephone calls. The limitations of undertaking remote qualitative research interviews are acknowledged in academic literature, including potential restrictions to expressing compassion and assessing the participant’s environment [ 17 , 18 ]. However, given the remaining prevalence of COVID-19 at the time of interview, it was judged that the ensuing risk posed by COVID-19 to both researchers and participants outweighed the potential drawbacks. Nevertheless, participants were offered face-to-face options if they were unable to participate remotely to maximise inclusion (although no participants chose to participate face-to-face).

Interviews and focus groups were audio recorded with an encrypted recorder and transcribed by a professional transcription service. Informed written consent to participate was taken prior to the interviews and focus groups. The average length of the interviews was 34 min and average length of the focus groups was 99 min. Two focus groups were co-facilitated by a CRAG member, a member of the local community who works for a mental health charity that supports local South Asian communities, who also provided translation support. In respect to authors positionality, coauthors SG, RW, MS and CS are university researchers in academic roles and had prior links to the CRAG members via a wider community forum (co-ordinated by the NIHR funded Applied Research Collaboration for Greater Manchester). The wider group met regularly to discuss and share learning regarding community experiences, community action and related research during the pandemic. BI is a member of the CRAG and a member of a local Syrian community.

Sampling & recruitment

The sampling strategy for community participants centred around groups that had been disproportionately affected by the COVID-19 pandemic in England, including ethnic minority groups, young adults, and those with long-term physical and mental health conditions. VCFSE participants included community and religious leaders, members of local community VCFSE organisations and smaller, informal community networks and groups from local communities. Health and care system stakeholders included local council workers and health and care system stakeholders (e.g. those organising the vaccination response in CCGs and GP Federations). Characteristics of the sample are provided in Table  1 . Overall, the study achieved a diverse sample of participants on the basis of gender and ethnicity.

A combination of purposive and snowballing sampling was used to recruit via pre-established links and connections to community networks and stakeholders to ensure the inclusion of specific seldom-heard groups. For example, members of African and Caribbean communities were recruited via a charity which supports the health of these groups, and members of South Asian communities were recruited via a mental health charity.

Quotes are described by respondent type (community member, VCFSE participant, health and care system stakeholder) and participant identifier number to maintain anonymity whilst providing important contextual detail.

Data analysis

We analysed the data using an adapted framework approach [ 19 ]. We adopted a framework approach to analysis as this is viewed as a helpful method when working within large multidisciplinary teams or when not all members of the team have experience of qualitative data analysis, as was the case within our team. This structured thematic approach is also considered valuable when handling large volumes of data [ 20 , 21 ] and was found to be a helpful way to present, discuss and refine the themes within the research team and CRAG meetings. We created an initial list of themes from coding four transcripts, and discussions with CRAG members: personal or family experiences/stories; work/education experiences; racism and racialised experiences; trust and mistrust; fear and anxiety; value of community/community approaches; access to services including healthcare; operational and logistical factors around vaccine rollout; communication and (mis)information. We used this set of themes and sub themes to code the remaining transcripts, including further inductively generated codes as analysis progressed, regularly discussing within the team.

We shared transcript coding amongst the study team, with one team member responsible for collating coded transcripts into a charting framework of themes/subthemes with illustrative transcript extracts. The themes were refined throughout the analysis period (November 2021-March 2022) with the research team and CRAG and were sense-checked with CRAG members and the wider study team, to synthesise a final iteration of the themes and sub-themes (see supplementary material). We present findings related to five overarching themes: (1) unmet needs of local communities during the pandemic: inaccessible care and distrust; (2) community-led approaches: social support and leadership to support services; (3) community led support to COVID-19 vaccination delivery; (4) operational and logistical barriers to community-based pandemic responses: challenges faced by the voluntary and community sector; (5) learning from the pandemic response in GM: trust building and harnessing community assets. Themes are discussed in more detail below.

Ethical approval

This study was approved by University of Manchester Ethics Committee (Proportionate University Research Ethics Committee) 24/06/21. Ref 2021-11646-19665.

Unmet needs of local communities during the pandemic: inaccessible care and distrust

The COVID-19 pandemic brought an unprecedented shift in the way NHS services could function due to social distancing and lockdown measures. Pressures included unprecedented demand on hospital capacity and infection control measures (within hospitals and across the NHS) which reduced workforce capacity. There were also staff shortages due to high levels of COVID-19 infection amongst NHS staff, and shortages in non-acute capacity due to staff re-deployment [ 22 , 23 ]. In an effort to reduce pressure on the NHS, the policy mantra “Protect the NHS” was coined as a keynote slogan from the early stages of the pandemic [ 24 ].

It is within this context that many community participants raised (spontaneously) that there was a general inability to access health services during the pandemic, including GP and specialist services.

when I tried to contact my doctor’s surgery I was on the call for over an hour, number 20, number 15. Then by the time I’m under ten I get cut off. And it happened continuously. I just couldn’t get through and I just gave up really…now it’s like a phone consultation before you can even go and see someone, and even for that you’re waiting two, three weeks. (1029, VCFSE participant)

This resulted in frustration amongst some community participants, who questioned the logic of “protecting the NHS”, seemingly at the expense of their health-related needs. This led to sentiments that other health needs were de-prioritised by decision-makers during the pandemic. It was felt that this logic was counter-productive and fell short of the principles of protecting the most vulnerable.

We were like it just didn’t matter, it could have been much more serious than just a cough or a cold, [] but the help was just not there” (1028, community participant). what about people who actually need to see a doctor so the very vulnerable ones that we’re supposed to be protecting. Yes, we’re protecting the NHS, I understand that, I said, but we’ve also got to protect all those vulnerable people that are out there that are actually isolated (1011, community participant).

Community participants described their fear of accessing healthcare service because of potential risks of catching the virus in these settings, and fear of insufficient care due to well-publicised pressures in NHS settings. Some VCFSE participants noted that the widely publicised pressures faced by the NHS, and heightened media and political attention around COVID-19 cases in health settings led to fear and anxiety Footnote 4 .

I didn’t go to the hospital because I was scared shitless whether I was going to come out alive from hospital.” (1023, community participant). …the number of people who didn’t access services when they should have done… They were either terrified they were going to go into hospital and catch COVID straightaway and die, or they were terrified that they were taking [the hospital space] away from someone else (2003, VCFSE participant).

Overall, this led to a strong sense that mainstream services were not supporting the needs of local communities. This was especially felt for those requiring specialist services (e.g. mental health or secondary services), and for those who had faced intersecting inequalities, such as health issues, language and digital/IT barriers, and newly settled refugees and immigrants.

Community-led approaches: social support and leadership to support services

As a consequence of this unmet need, VCFSE and community participants identified that local communities themselves increased activities to provide community support. Participants felt strongly that this increased support provided by the VCFSE sector and community networks remains under-recognised and under-valued by the health system and wider public.

BAME organisations were going around door to door, giving hand sanitisers, giving masks to everybody [ ]. And it was the BAME community that was the most active during COVID delivering medication, delivering food to houses, doing the shopping. [ ] Nobody gave credit to that. Nobody talks about the good work that the BAME community has done. (1020, community participant)

A number of community and VCFSE sector participants highlighted the work done at the community level, by either themselves or other networks to support local communities. This included providing support packages, running errands for vulnerable community members, cooking and food shopping services, a helpline and communication networks for local communities, and online wellbeing and support groups.

We might not have been in hospital, but we were frontline workers in the community. (1028, community participant)

Support was provided by formal VCFSE organisations and by smaller, sometimes informal, community networks and channels, in which support mechanisms included mental health support and wellbeing focused communications to combat loneliness and boost wellbeing. This was often focused around outreach and the provision of community-based support to the most marginalised and vulnerable groups that had been disproportionately impacted during the pandemic, e.g. recently settled refugees and asylum seekers, older individuals.

We have an Iranian group in Salford…And one of them spotted this young woman in the queue and she thought she looked Iranian, you know….anyway she started a conversation, and this person had been an asylum seeker at the beginning of the pandemic and had been in a detention centre during the pandemic. And then, finally got their leave to remain and then were just basically dumped in Salford. [ ] just having that friendly face and someone was trying to start that conversation, she was able to be linked into this group of women who support other refugees and asylum seekers from the Middle East. (2014, VCFSE participant)

Community led support to COVID-19 vaccination delivery

The VCFSE sector and community networks also played a crucial part in supporting the COVID-19 vaccine delivery. Community, VCFSE and system-sector participants recognised the unique role that the VCFSE sector had played in reaching diverse communities and sections of communities not reached by the mainstream vaccination programme. For example, VCFSE groups aided vaccine delivery by helping run vaccine ‘pop-up’ sites in community spaces including mosques and other religious sites, children’s centres, and local specialist charities (e.g.: refugee and sex worker charities).

The use of community ‘champions’ and community ‘connectors’ to convey messaging around the vaccination drive were deemed especially vital in this regard. Trusted members of communities (e.g. community leaders) who had crucial pre-existing communication channels were able to effectively interact with different parts of communities to advocate for the vaccine and address misinformation. Situated within communities themselves, these ‘champions’ held established trust within communities, allowing conversations surrounding the vaccine to be held on the basis of shared experiences, honesty, openness, compassion and understanding.

So, as with any ethnic minority community, unless you’re part of it, it’s almost impossible to completely dig out all its norms and its very, very fine distinctions…[ ] what is acceptable, what is not acceptable[ ]? Unless you’re part of it, or you’ve really immersed yourself in the culture for decades, it’s almost impossible to get it (2015, VCFSE participant) One of the strongest approaches that you can take to increase uptake in any community, whether it be pregnant women or a faith group or a geographical area or a cultural group, is that if you’ve got a representative from that community leading on and advocating for the vaccine, you’re going to have the best impact (2011, health and care system stakeholder participant). unless Imams or significant people in the community were coming out for them and saying, it’s absolutely fine, it’s safe, and culturally it’s the right thing to do, there was a bit of uncertainty there (2010, health and care system stakeholder participant).

Health and care system stakeholders also emphasised the importance of “community ownership” of vaccination approaches, and of system responsiveness to identified needs and priorities at the community level. Health and care system stakeholders recognised that they were able to utilise community links to have better on-the-ground knowledge, provided in real time, to supplement locally held data to inform targeted efforts to boost uptake. This included council led initiatives including door-knocking with council staff, local health improvement practitioners, and VCFSE representatives working together to provide information about vaccine clinics and register people for vaccine appointments.

if messages went out and they didn’t land right they [the VCFSE sector] could be the first people [that] would hear about that and they could feed that back to us. [ ]….we were able to regularly go to them and say, look from a geographical perspective we can see these key areas…[ ] the people aren’t coming for vaccinations, [ ] what more can you tell us. Or, we can say, from these ethnicities in this area we’re not getting the numbers, what more can you tell us. And when we’ve fed them that intelligence then they could then use that to go and gain further insight for us, so they were a kind of, key mechanism (2010, health and care system participant).

Operational and logistical barriers to community-based pandemic responses: challenges faced by the voluntary and community sector

VCFSE sector and health and care system stakeholder participants reported significant logistical barriers to partnership working to support communities during the pandemic. Barriers included red tape and bureaucracy, which delayed responses to communities’ health and wellbeing needs.

whilst we were buying masks and hand sanitisers and going door to door, [ ] the council were still getting their paperwork in order, their policies in order, it was meeting after meeting. It took them seven to eight weeks for them to say [ ] we’ve got masks, would you like to help dish them out. (1029, VCFSE participant)

VCFSE and health and care system participants also raised challenges with respect to the VCFSE sector supporting the vaccination programme. This resulted in frustration amongst both VCFSE and health and care system participants who recognised the value of these community-based approaches.

The time that trickles through to the council and the time that the council turn around and say all right, we’ll actually let you do it was weeks later, and the community is turning round to us and saying to us well, what’s going on? We don’t like being messed around like this… (2008, VCFSE participant).

Participants highlighted the numerous health-related bodies with various roles which comprise a complex system for VCFSE partners to navigate, in part due to organisational and cultural clashes. Frustration was felt by both VCFSE and health and care system stakeholder participants (from local councils) in this respect. One VCFSE participant discussing the vaccine rollout noted:

We hit dead end after dead end within the council and there was literally very little response….You’ve got so many departments within this massive organisation called the council…[ ].it’s very difficult to navigate all that and deal with all that bureaucracy… (2008, VCFSE participant).

Broader institutional and organisational barriers to VCFSE support were identified, where cultural clashes between differing values and ways of working emerged, including ethos surrounding risk aversion and the system-level commitment to privilege value-for-money during the vaccination rollout. More practical issues around information governance and training were also raised as barriers to collaborative working.

I don’t think that they understand the power of community and the way community works. I don’t think that at a governmental level they understand what it means to penetrate into a community and actually understand what needs to be done to help a community…[ ] If they did and they had better links and ties into understanding that and helping that then we likely wouldn’t have had so many hurdles to get through (2008, VCFSE participant). ….in terms of public money, this is a public programme, we need to get value for the public pound. So we’re saying to [VCFSE organisation], how much is it going to cost? And [VCFSE organisation] are like, well, we don’t really know, until we deliver it. And we’re like, well, we can’t really approve it, until we know what it’s going to cost…. (2006, health and care system stakeholder participant)

Overall, these issues surmounted to difficulties of power-sharing between public sector organisations and VCFSEs during a time of rapid response to a public health crisis, political, institutional, and other external pressures. This was echoed amongst VCFSE and health and care system stakeholder participants, where frustration towards this was felt from both sides.

the public sector [ ] need to get better at letting go of some of the control. So even still, after I said, so many times, [VCFSE organisation] are delivering this, [VCFSE organisation] are doing everything, [ ] I still got the comms team going, are we doing a leaflet? No, [VCFSE organisation] are doing it, this is a [VCFSE organisation] programme, this isn’t a Council programme. (2006, local authority participant) it is difficult sometimes working with organisations, I find myself very much stuck in the middle sometimes [ ] I engage with [community groups] and ask them how best we do it and then we put things in place that they’ve asked for, and then they’ve told us it’s not working why have you done it like that. [ ] I think it’s acknowledgement to do it right, it takes time, and it takes effort, it takes resource. (2010, local authority participant)

Health and care system stakeholders also highlighted the importance of accessibility and localised vaccination hubs to reach different parts of diverse local communities e.g. sites in local mosques and sites near local supermarkets to reach different demographics. For instance, having mobile vaccination sites to reduce accessibility barriers, alongside dialogue-based initiatives to answer questions and respond to concerns from local communities about the vaccine, with the view to building trust without explicit pressure to receive the vaccine. Describing their efforts to engage with a member of the local community over the vaccine, two local health and care system stakeholders detailed the following example of how localised, communication-based approaches were deemed successful:

She came to the clinic and there were a lot of tears. It was very emotional. She’d been through a very difficult journey and had got pregnant by IVF, so it was a big decision for her, a big risk that she thought she was taking. Whether she took the vaccine or not, it felt like a risk to her, [ ] we were able to sit down and talk to her. We had some peers there. So we had other pregnant women there who’d had the vaccine, that were able to give her some confidence. We had the specialist multicultural midwife there, [ ] And we literally just sat and drank coffee with her and let her talk and she ended up agreeing to have the vaccine [ ] (2011, system-level stakeholder). …And the feedback from that lady was amazing. A couple of weeks ago I contacted her to make sure she was going to come down for her booster and she was just so grateful. [ ] she’d had backlash from her family and people within her community for taking up the vaccine and they still thought it was a massive risk. But she had no doubts that she’d done absolutely the right thing… (2012, system-level stakeholder).

Learning from the pandemic response in GM: trust building and harnessing community assets

Taking these findings from health and care system stakeholders, community and VCFSE participants, several learning points were identified.

In terms of vaccine delivery, some health and care system stakeholder participants reflected the need for more joined-up ways of working, across existing services and amongst VCFSE partners, to ensure efficiency and maximise uptake by embedding the vaccination programmes into other health services. For example, offering vaccination through health visiting or health checks, or offering COVID-19 vaccine boosters and flu vaccinations in single visits at care homes. These settings could also provide opportunities for dialogue with local communities where there is pushback against vaccination. Another health and care system stakeholder identified the need for greater joined up delivery of services; utilising the VCFSE sector to deliver multiple services simultaneously, including the vaccine, to improve vaccine uptake and access to other healthcare services:

the sex worker clinic is a good example of that. [ ] People were coming in for another reason, to get their health check and to get their support from the advisors there at that voluntary organisation, [ ]…if there’s a multiple purpose at the site, for people to attend, you can start to engage them in the conversation and then take the opportunity and vaccinate them. So I’m really interested in looking at that a little bit more, about how that can help to increase uptake. (2011, health and care system stakeholder participant)

A VCFSE participant suggested using educational settings such as schools as a channel to disseminate public health and vaccine-related information, as trusted settings which have wide-reach to many different communities.

A number of health and care system stakeholders, VCFSE and community participants noted that long-term, continuous, meaningful engagement is crucial to build longer-term trust between institutions and communities, and to improve the efficacy of public health measures. It was felt that more concentrated efforts were required from the NHS and other statutory organisations to reach the most marginalised and minoritised communities, for example through door-knocking and welfare calls. Participants highlighted that this was required not solely at times of public health crises, but as part of continued engagement efforts, in order to adequately engage with the most marginalised groups and effectively build long-term trust. This may be done most effectively by building on existing links to marginalised communities, for example using education liaison staff to understand traveller communities’ perspectives on the vaccine.

proactive engagement with communities both locally and nationally to say, [the health system] are looking at this, what’s people’s thoughts, views, you know, is there any issues with this, what more can we do, what do you need to know to make an informed decision. This is what we were thinking of, how would this land…I think we could learn by, [ ] doing that insight work, spending more time working with communities at a kind of, national, regional, and local level (2010, health and care system stakeholder participant). [the health system] could have engaged better with communities, I think bringing them in at the beginning. So, having them sat around the table, representatives from different groups, understanding how to engage with them from the very beginning…I think they could have used the data very very early on to inform who were engaging. We didn’t quite get it right at the beginning, we didn’t link the public health data teams with the comms and engagement teams (2013, health and care system stakeholder participant).

The tone of communications was also seen to be important. One health and care system stakeholder participant noted that the strategy of pushing communications and public health messaging aimed at behavioural change did not achieve the desired effect as these did not engage effectively with the communities to alleviate or address key concerns about the vaccine. These were deemed less successful than starting from a place of understanding and openness to generate constructive dialogue which could foster trust and respect.

There was also more specific learning identified in terms of collaboration between public sector institutions, VCFSEs and community links, with this seen as vital to build strong, long-term relationships between sectors based on trust and mutual respect. This should also involve working to share knowledge between sectors in real-time.

Health and care system stakeholder and VCFSE participants both suggested a failure to further develop partnerships fostered during the pandemic would be a lost opportunity that could potentially create distrust and additional barriers between communities, VCFSEs and public organisations, perhaps further marginalising seldom-heard groups.

we need to find ways which we have ongoing engagement, and I think it needs to be more informal. People don’t want to be just constantly asked and asked and asked (2010, health and care system stakeholder participant). a network of just sharing information and insight, rather than just engaging when you’ve got something specific to engage about. (2010, health and care system stakeholder participant) We were then thinking to ourselves, well, maybe we shouldn’t be doing this. If it’s going to cause us damage, if the council can’t work with us properly maybe we just shouldn’t do it. We’ve got to weigh up. We don’t want to lose our trust within the community (2008, VCFSE participant).

In terms of dynamics and working arrangements between sectors, participants thought it important to allow community organisations and VCFSEs to lead on their areas of speciality, e.g.: community organisations leading on outreach and communications within and to communities. This relates to the identified need of pursuing adaptable and flexible approaches to vaccine delivery. Moreover, there is a need to allow more joined-up decision-making between the health system and VCFSEs to ensure better use of local intelligence and improved planning.

Discussion & policy implications

Unmet need and the role of communities during the pandemic.

Our findings clearly demonstrate that local communities were not supported sufficiently by mainstream services during the COVID-19 pandemic. This in turn led to frustration, fear and loss of faith in the healthcare system as a whole, evidenced also in responses to the COVID-19 vaccination programme in which distrust results from wider experiences of historical marginalisation and structural inequalities [ 14 ]. In the absence of mainstream service support, our findings demonstrate how VCFSE organisations and community networks mobilised to support local communities to fulfil unmet health, social care, and wellbeing needs. This supports emerging evidence from across England which finds that the VCFSE sector played a key role in supporting communities during the pandemic [ 6 , 8 , 25 ].

The importance of community-based, localised approaches, community-led and community owned initiatives, ‘community champions’ and community connectors’ were also highlighted as crucial to the success of the COVID-19 vaccination drive. Participants noted that community-led approaches were uniquely positioned to reach some communities when mainstream approaches were unsuccessful. This is echoed in existing literature, where the role of localised community responses was deemed important to reach marginalised groups, as part of the wider pandemic response [ 26 ].

Operational and logistical barriers

Operational and logistical barriers created dissonance between communities and the system. These barriers included difficulties with decision-making and power-sharing between VCFSE and commissioning or clinical organisations, organisational cultural clashes, red-tape and bureaucracy, and complex systems and power structures to navigate. This builds on existing evidence of barriers to partnership working during the pandemic, including cultural clashes and bureaucracy/red tape [ 5 , 27 ]. The VCFSE sector also suffered from the closure of services, and reduced funding and resources due to increased demand for services and needing to adapt service provision [ 8 ].

These factors hindered collaborative working and created risk for VCFSEs, including putting tension on relationships with local communities resulting from delays implementing services. In most VCFSE-health system partnerships, participants noted that power is generally held by the health system partner, but reputational risk and additional resource-based costs lie with VCFSE partners. Supporting capacity building and workforce resource within the voluntary sector will strengthen this [ 28 ].

Inadequate processes to establish collaborative working enhance distrust between the health system and VCFSE sector, which in turn enhances difficulties for collaborative working. Trust is an important factor in how the system interacts with VCFSEs, with a lack of trust leading to further bottlenecks in VCFSE activities [ 29 ]. Alongside this, is the need for greater health system appreciation for the VCFSE sector, with VSCE partners reporting they faced greater scrutiny and more arduous administrative processes than private sector partners [ 2 , 29 ].

Learning from the pandemic: service prioritisation

All sectors of the health and care system face pressures from resource shortages, internal and external targets [ 30 , 31 ]. This is often linked to drives to increase the value-for-money of services, but key questions remain as to how to assimilate the goals of achieving health equity within value-for-money objectives [ 32 ]. To this end, prioritising value-for-money may come at odds with reducing health inequities. For example, during the rollout of the vaccination programme, additional resources and innovative approaches were required to reach marginalised communities [ 33 , 34 ]. This is supported by emerging evidence from England and internationally that efforts to drive vaccination uptake and reduce inequities in uptake amongst marginalised populations require significant resources and a breadth of approaches to maximise uptake [ 34 ]. Our findings suggest that changes in vaccine uptake were smaller and slower to be realised in these populations, resulting in a “slow burn” in terms of demonstrating quantifiable outcomes. Given the NHS principles of equity [ 10 , 35 ], reaching these groups should remain a public health priority, and failure to prioritise these groups may incur greater long-term financial costs resulting from greater health service needs. Our findings support that challenging entrenched attitudes and frameworks for how success is measured and adapting structures to better incentivise targeted interventions for marginalised or high-risk groups is essential to prioritising addressing unmet needs amongst marginalised communities.

The changing commissioning landscape

The development of ICSs and place-based partnerships has changed how health and care services are commissioned. National guidance encourages health and care leaders to include VCFSE organisations in partnership arrangements and embed them into service delivery [ 12 ], with ‘alliance models’ between ICSs and the VCFSE sector [ 36 ] established in certain regions (see for example [ 37 ]. However, this rests on “a partnership of the willing” [ 37 ] between ICS partners and VCFSE sector players, and concrete guidance for achieving collaborative working in practice, is lacking. As the findings in this paper point to, evolving decision-making processes may add to resource burdens for VCFSE organisations. Traditional health and care partners such as the NHS and local authorities should consider how their ways of working may need to change to foster full VCFSE inclusion on an equal standing, otherwise only the VCFSE stakeholders with sufficient capacity and resource may be able to be meaningfully involved.

Creating a VCFSE-accessible health and care system

In terms of fostering relationships between different sectors, participants acknowledged that pre-pandemic efforts to engage communities and community networks and VCFSEs were insufficient, with more meaningful, well-resourced engagement required going forward. It was also identified by participants the importance of avoiding tokenistic involvement of the VCFSE sector, which may be counter-productive for developing meaningful long-term partnerships. More equal relationships between statutory and VCFSE sectors are needed to foster improved collaborative working [ 5 , 38 ], and this is identified already at the GM level [ 28 ]. Central to this is actioned principles of co-design, including power-sharing, community ownership and trust. In order for co-design strategies to be successful, recognition of the role of the VCFSE sector and their ownership of approaches must be championed within co-design strategies and the enactment of co-designed activities.

Relatedly, greater trust of the VCFSE sector to deliver services effectively and efficiently is needed from health and social care decision-makers to ensure that funding compliance measures and processes are proportionate and not overly burdensome, to avoid funding bottlenecks which in turn impact service delivery [ 2 ]. Currently at the national level, VCFSE applicants typically only become aware of funding through existing networks, leaving less-connected organisations to find out ‘by chance’, thereby limiting reach amongst other organisations [ 2 ]. This may be especially true for smaller or ad-hoc VCFSE networks and groups. Our findings support that bottlenecks to applying for funding should be removed, and more streamlined processes for accessing funding championed [ 2 ].

Our findings also suggest that health systems should engage with the full breadth of the VCFSE sector, creating space for the involvement of smaller scale and less formal organisations as partners. Sharing of best practice and advice for adapting to local contexts should be promoted, alongside evaluation of collaborative models.

Finally, the pandemic period saw unprecedented state-sponsored investment into the VCFSE sector [ 29 ]. Within the GM context, this funding enabled VCFSEs to develop organisational capacity and systems, develop new partnerships, and better respond to the (unmet) needs of local communities [ 39 ]. Currently there are no clear plans to maintain this investment, but sustained inter-sector partnership working will require continued investment in the VCFSE sector.

Strengths & limitations

There are two main limitations to this study. Firstly, whilst the study achieved diversity in its sample, we could not achieve representation across all marginalised communities and therefore could not cover the experiences of all marginalised communities in-depth. As such, whilst the analyses provides valuable insights, such insights may not be transferrable and do not reflect all communities in GM. Secondly, whilst other studies focused on multiple city-regions or areas, our study is limited to the city region of GM. However, this focus provides an in-depth analysis on one region, and, as we discuss in the framing of the paper, we contend that the analysis presented in this paper serves as an exemplar to explore further at the national and international level. It should also be noted that co-design approaches are inevitably time and resource-heavy, and this was challenging in the context of this study, as local stakeholders wanted timely insights to inform the vaccination programme. However, one of the key strengths of our participatory approach was that this enabled a direct connection with the experiences of communities as relevant to the research, in order to shape the research questions, as well as the design and conduct of the study.

Overall, the contribution of the VCFSE sector during the pandemic is clear, with significant support provided in respect to community health and wellbeing and vaccination delivery. Nevertheless, there remains much to learn from the pandemic period, with the potential to harness capacity to tackle inequalities and build trust through shared learning and greater collaborative working. Maintaining an environment in which VCFSE partners are under-recognised, under-valued, and seemingly face further bureaucratic barriers will only exacerbate issues to collaborative working. There are also significant questions around systemic issues and sustainability, which must be addressed to overcome existing barriers to collaborative working between sectors. For instance, our findings identify the importance of flexibility and adaptability, in ongoing and future service delivery. Where this is not pursued this may not only impact service delivery but also create roadblocks to collaboration between sectors, creating divisions between entities whilst ultimately trying to effect change on similar goals (i.e. improved population health). ICS–VCFSE Alliances and community connectors may be a mechanism to promote this, but clear, actionable guidance will be required to translate rhetoric to real-world progress.

Data availability

Data for this research data will not be made publicly available as individual privacy could be compromised. Please contact Stephanie Gillibrand ([email protected]) for further information.

10 GM is an umbrella group which seeks to represent the VCSE sector in GM. More information is available here: https://10gm.org.uk/ .

These themes are explored in a related paper by Gillibrand et al. [ 14 ].

Topic guides are provided as supplementary material.

Distrust was also raised in relation to fear and anxiety in NHS settings, and this is discussed in detail in a related paper from this study by Gillibrand et al. [ 14 ].

Abbreviations

Clinical Commissioning Groups

Community Research Advisory Group

Greater Manchester

Integrated Care Systems

Voluntary, Community and Social Enterprise

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Acknowledgements

The research team would like to thank ARC-GM PCIE team (Sue Wood, Aneela McAvoy, & Joanna Ferguson) and the Caribbean and African Health Network for their support in this study. We would also like to thank the Advisory Group members: Nasrine Akhtar, Basma Issa and Charles Kwaku-Odoi for their dedicated time, commitment, and valuable inputs into this research project and to partners who contributed to the early inception of this work, including members of the ARC-GM PCIE Panel & Forum & Nick Filer. We would also like to extend our thanks to the study participants for their participation in this research.

The project was funded by an internal University of Manchester grant and supported by the National Institute for Health and Care (NIHR) Applied Research Collaboration for Greater Manchester. Melissa Surgey’s doctoral fellowship is funded by the Applied Research Collaboration for Greater Manchester. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.

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Stephanie Gillibrand

NIHR Applied Research Collaboration for Greater Manchester, Greater Manchester, England, UK

Ruth Watkinson, Melissa Surgey & Caroline Sanders

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Contributions

SG, lead writer/editor, design of the work, RW, design of the work, drafting of article, review and revise suggestionsMS, draft of the article, review and revise suggestionsBI, design of the work, review and revise suggestionsCS, design of the work, draft of the article, review and revise suggestionsAll authors read and approved the final manuscript.

Corresponding author

Correspondence to Stephanie Gillibrand .

Ethics declarations

Ethics approval and consent to participate.

This study was approved by University of Manchester Ethics Committee (Proportionate UREC) 24/06/21. Ref 2021-11646-19665. Informed consent to participate in the research was taken from all research participants ahead of their participation in the study. Consent to participate in the study was taken from each participant by a member of the research team. All experiments were performed in accordance with relevant guidelines and regulations.

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Gillibrand, S., Watkinson, R., Surgey, M. et al. “ We might not have been in hospital, but we were frontline workers in the community ”: a qualitative study exploring unmet need and local community-based responses for marginalised groups in Greater Manchester during the COVID-19 pandemic. BMC Health Serv Res 24 , 621 (2024). https://doi.org/10.1186/s12913-024-10921-4

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DOI : https://doi.org/10.1186/s12913-024-10921-4

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Connecting communities to primary care: a qualitative study on the roles, motivations and lived experiences of community health workers in the Philippines

BMC Health Services Research

Background Community health workers (CHWs) are an important cadre of the primary health care (PHC) workforce in many low- and middle-income countries (LMICs). The Philippines was an early adopter of the CHW model for the delivery of PHC, launching the Barangay (village) Health Worker (BHW) programme in the early 1980s, yet little is known about the factors that motivate and sustain BHWs’ largely voluntary involvement. This study aims to address this gap by examining the lived experiences and roles of BHWs in urban and rural sites in the Philippines. Methods This cross-sectional qualitative study draws on 23 semi-structured interviews held with BHWs from barangays in Valenzuela City (urban) and Quezon province (rural). A mixed inductive/ deductive approach was taken to generate themes, which were interpreted according to a theoretical framework of community mobilisation to understand how characteristics of the social context in which the BHW programme operates act as facilitators or ...

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Although community participation in health has become a major plank in WHO's Primary Health Care platform, comparatively little concrete programme data has been collected which helps to define its potentials and problems. In an effort to expand knowledge in this area, a study of three Church-related community health programmes in Southeast Asia was undertaken. All three programmes have the stated goal of ‘having the community take responsibility for its own health care’ and as a concrete step in this direction, have developed training programmes for community health workers (CHWs). Starting about the same time, 1973–1975, they provide data for comparative examination of the development of community participation.As part of the study, a questionnaire was designed to elicit information from three categories of programme participants (the medical professionals, the community development workers and the CHWs) in community health programmes. It sought to discover their attitudes about the objectives of community health programmes; impact and measurements of success of these programmes; the role of health services; the role of medical professionals and community development workers in community health programmes; the role and training of community health workers; and financing community health programmes. The hypothesis of the investigation was that all three categories of programme participants in one programme share attitudes distinct from participants in the other two programmes. Although, due to technical reasons, it was not possible to test this hypothesis, the survey produced other conclusions. One was that the categories of professional people (the medical and community development workers) in all three programmes share attitudes which are distinct from the CHWs in all three programmes. Secondly, participants in the same programme most often exhibit the same attitudes when a programme has initiated an activity which enables the CHW to gain experience in health work.

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This study explored the experiences of Barangay Health Workers (BHW) in Geographically Isolated and Disadvantaged Areas (GIDA) amidst this new normal. This study used the Qualitative phenomenological method of research. This study was conducted in the selected GIDA barangays in Panabo City, Davao Del Norte, Philippines. It has seven (7) participants through purposive sampling, who are the BHWs among the selected barangays with one (1) year and above work experience. The researchers used a validated interview guide questionnaire. The results have revealed that barangay health workers in the new normal experience huge adjustments in rendering healthcare services during the pandemic. Also, the results exposed that barangay health workers experience deficiency of transportation and primary health care medicines and equipment. Moreover, the results disclosed that barangay health workers aspire to gain more importance, such as additional compensation and having complete medical healthcare equipment on their respective barangays.

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