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Qualitative Research Design

What is Qualitative research design?

Qualitative research is a type of research that explores and provides deeper insights into real-world problems. Instead of collecting numerical data points or intervening or introducing treatments just like in quantitative research, qualitative research helps generate hypotheses as well as further investigate and understand quantitative data. Qualitative research gathers participants' experiences, perceptions, and behavior. It answers the hows and whys instead of how many or how much . It could be structured as a stand-alone study, purely relying on qualitative data or it could be part of mixed-methods research that combines qualitative and quantitative data.

Qualitative research involves collecting and analyzing non-numerical data (e.g., text, video, or audio) to understand concepts, opinions, or experiences. It can be used to gather in-depth insights into a problem or generate new ideas for research. Qualitative research is the opposite of quantitative research, which involves collecting and analyzing numerical data for statistical analysis. Qualitative research is commonly used in the humanities and social sciences, in subjects such as anthropology, sociology, education, health sciences, history, etc.

While qualitative and quantitative approaches are different, they are not necessarily opposites, and they are certainly not mutually exclusive. For instance, qualitative research can help expand and deepen understanding of data or results obtained from quantitative analysis. For example, say a quantitative analysis has determined that there is a correlation between length of stay and level of patient satisfaction, but why does this correlation exist? This dual-focus scenario shows one way in which qualitative and quantitative research could be integrated together.

Research Paradigms 

• Positivist versus Post-Positivist
• Social Constructivist (this paradigm/ideology mostly birth qualitative studies)

Events Relating to the Qualitative Research and Community Engagement Workshops @ CMU Libraries

CMU Libraries is committed to helping members of our community become data experts. To that end, CMU is offering public facing workshops that discuss Qualitative Research, Coding, and Community Engagement best practices.

The following workshops are a part of a broader series on using data. Please follow the links to register for the events. 

Qualitative Coding

Using Community Data to improve Outcome (Grant Writing)

Survey Design  

Upcoming Event: March 21st, 2024 (12:00pm -1:00 pm)

Community Engagement and Collaboration Event 

Join us for an event to improve, build on and expand the connections between Carnegie Mellon University resources and the Pittsburgh community. CMU resources such as the Libraries and Sustainability Initiative can be leveraged by users not affiliated with the university, but barriers can prevent them from fully engaging.

The conversation features representatives from CMU departments and local organizations about the community engagement efforts currently underway at CMU and opportunities to improve upon them. Speakers will highlight current and ongoing projects and share resources to support future collaboration.

Event Moderators:

Taiwo Lasisi, CLIR Postdoctoral Fellow in Community Data Literacy,  Carnegie Mellon University Libraries

Emma Slayton, Data Curation, Visualization, & GIS Specialist,  Carnegie Mellon University Libraries

Nicky Agate , Associate Dean for Academic Engagement, Carnegie Mellon University Libraries

Chelsea Cohen , The University’s Executive fellow for community engagement, Carnegie Mellon University

Sarah Ceurvorst , Academic Pathways Manager, Program Director, LEAP (Leadership, Excellence, Access, Persistence) Carnegie Mellon University

Julia Poeppibg , Associate Director of Partnership Development, Information Systems, Carnegie Mellon University 

Scott Wolovich , Director of New Sun Rising, Pittsburgh 

Additional workshops and events will be forthcoming. Watch this space for updates. 

Workshop Organizer

Qualitative Research Methods

What are Qualitative Research methods?

Qualitative research adopts numerous methods or techniques including interviews, focus groups, and observation. Interviews may be unstructured, with open-ended questions on a topic and the interviewer adapts to the responses. Structured interviews have a predetermined number of questions that every participant is asked. It is usually one-on-one and is appropriate for sensitive topics or topics needing an in-depth exploration. Focus groups are often held with 8-12 target participants and are used when group dynamics and collective views on a topic are desired. Researchers can be participant observers to share the experiences of the subject or non-participant or detached observers.

What constitutes a good research question? Does the question drive research design choices?

According to Doody and Bailey (2014);

 We can only develop a good research question by consulting relevant literature, colleagues, and supervisors experienced in the area of research. (inductive interactions).

Helps to have a directed research aim and objective.

Researchers should not be “ research trendy” and have enough evidence. This is why research objectives are important. It helps to take time, and resources into consideration.

Research questions can be developed from theoretical knowledge, previous research or experience, or a practical need at work (Parahoo 2014). They have numerous roles, such as identifying the importance of the research and providing clarity of purpose for the research, in terms of what the research intends to achieve in the end.

Qualitative Research Questions

What constitutes a good Qualitative research question?

A good qualitative question answers the hows and whys instead of how many or how much. It could be structured as a stand-alone study, purely relying on qualitative data or it could be part of mixed-methods research that combines qualitative and quantitative data. Qualitative research gathers participants' experiences, perceptions and behavior.

Examples of good Qualitative Research Questions:

What are people's thoughts on the new library? 

How does it feel to be a first-generation student attending college?

Difference example (between Qualitative and Quantitative research questions):

How many college students signed up for the new semester? (Quan) 

How do college students feel about the new semester? What are their experiences so far? (Qual)

• Qualitative Research Design Workshop Powerpoint

Foley G, Timonen V. Using Grounded Theory Method to Capture and Analyze Health Care Experiences. Health Serv Res. 2015 Aug;50(4):1195-210. [ PMC free article: PMC4545354 ] [ PubMed: 25523315 ]

Devers KJ. How will we know "good" qualitative research when we see it? Beginning the dialogue in health services research. Health Serv Res. 1999 Dec;34(5 Pt 2):1153-88. [ PMC free article: PMC1089058 ] [ PubMed: 10591278 ]

Huston P, Rowan M. Qualitative studies. Their role in medical research. Can Fam Physician. 1998 Nov;44:2453-8. [ PMC free article: PMC2277956 ] [ PubMed: 9839063 ]

Corner EJ, Murray EJ, Brett SJ. Qualitative, grounded theory exploration of patients' experience of early mobilisation, rehabilitation and recovery after critical illness. BMJ Open. 2019 Feb 24;9(2):e026348. [ PMC free article: PMC6443050 ] [ PubMed: 30804034 ]

Moser A, Korstjens I. Series: Practical guidance to qualitative research. Part 3: Sampling, data collection and analysis. Eur J Gen Pract. 2018 Dec;24(1):9-18. [ PMC free article: PMC5774281 ] [ PubMed: 29199486 ]

Houghton C, Murphy K, Meehan B, Thomas J, Brooker D, Casey D. From screening to synthesis: using nvivo to enhance transparency in qualitative evidence synthesis. J Clin Nurs. 2017 Mar;26(5-6):873-881. [ PubMed: 27324875 ]

Soratto J, Pires DEP, Friese S. Thematic content analysis using ATLAS.ti software: Potentialities for researchs in health. Rev Bras Enferm. 2020;73(3):e20190250. [ PubMed: 32321144 ]

Zamawe FC. The Implication of Using NVivo Software in Qualitative Data Analysis: Evidence-Based Reflections. Malawi Med J. 2015 Mar;27(1):13-5. [ PMC free article: PMC4478399 ] [ PubMed: 26137192 ]

Korstjens I, Moser A. Series: Practical guidance to qualitative research. Part 4: Trustworthiness and publishing. Eur J Gen Pract. 2018 Dec;24(1):120-124. [ PMC free article: PMC8816392 ] [ PubMed: 29202616 ]

Saldaña, J. (2021). The coding manual for qualitative researchers. The coding manual for qualitative researchers, 1-440.

O'Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014 Sep;89(9):1245-51. [ PubMed: 24979285 ]

Palermo C, King O, Brock T, Brown T, Crampton P, Hall H, Macaulay J, Morphet J, Mundy M, Oliaro L, Paynter S, Williams B, Wright C, E Rees C. Setting priorities for health education research: A mixed methods study. Med Teach. 2019 Sep;41(9):1029-1038. [ PubMed: 31141390 ]

• Last Updated: Feb 14, 2024 4:25 PM
• URL: https://guides.library.cmu.edu/c.php?g=1346006

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• Knowledge Base

Methodology

• What Is Qualitative Research? | Methods & Examples

What Is Qualitative Research? | Methods & Examples

Published on June 19, 2020 by Pritha Bhandari . Revised on June 22, 2023.

Qualitative research involves collecting and analyzing non-numerical data (e.g., text, video, or audio) to understand concepts, opinions, or experiences. It can be used to gather in-depth insights into a problem or generate new ideas for research.

Qualitative research is the opposite of quantitative research , which involves collecting and analyzing numerical data for statistical analysis.

Qualitative research is commonly used in the humanities and social sciences, in subjects such as anthropology, sociology, education, health sciences, history, etc.

• How does social media shape body image in teenagers?
• How do children and adults interpret healthy eating in the UK?
• What factors influence employee retention in a large organization?
• How is anxiety experienced around the world?
• How can teachers integrate social issues into science curriculums?

Table of contents

Approaches to qualitative research, qualitative research methods, qualitative data analysis, advantages of qualitative research, disadvantages of qualitative research, other interesting articles, frequently asked questions about qualitative research.

Qualitative research is used to understand how people experience the world. While there are many approaches to qualitative research, they tend to be flexible and focus on retaining rich meaning when interpreting data.

Common approaches include grounded theory, ethnography , action research , phenomenological research, and narrative research. They share some similarities, but emphasize different aims and perspectives.

Note that qualitative research is at risk for certain research biases including the Hawthorne effect , observer bias , recall bias , and social desirability bias . While not always totally avoidable, awareness of potential biases as you collect and analyze your data can prevent them from impacting your work too much.

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Each of the research approaches involve using one or more data collection methods . These are some of the most common qualitative methods:

• Observations: recording what you have seen, heard, or encountered in detailed field notes.
• Interviews:  personally asking people questions in one-on-one conversations.
• Focus groups: asking questions and generating discussion among a group of people.
• Surveys : distributing questionnaires with open-ended questions.
• Secondary research: collecting existing data in the form of texts, images, audio or video recordings, etc.
• You take field notes with observations and reflect on your own experiences of the company culture.
• You distribute open-ended surveys to employees across all the company’s offices by email to find out if the culture varies across locations.
• You conduct in-depth interviews with employees in your office to learn about their experiences and perspectives in greater detail.

Qualitative researchers often consider themselves “instruments” in research because all observations, interpretations and analyses are filtered through their own personal lens.

For this reason, when writing up your methodology for qualitative research, it’s important to reflect on your approach and to thoroughly explain the choices you made in collecting and analyzing the data.

Qualitative data can take the form of texts, photos, videos and audio. For example, you might be working with interview transcripts, survey responses, fieldnotes, or recordings from natural settings.

Most types of qualitative data analysis share the same five steps:

• Prepare and organize your data. This may mean transcribing interviews or typing up fieldnotes.
• Review and explore your data. Examine the data for patterns or repeated ideas that emerge.
• Develop a data coding system. Based on your initial ideas, establish a set of codes that you can apply to categorize your data.
• Assign codes to the data. For example, in qualitative survey analysis, this may mean going through each participant’s responses and tagging them with codes in a spreadsheet. As you go through your data, you can create new codes to add to your system if necessary.
• Identify recurring themes. Link codes together into cohesive, overarching themes.

There are several specific approaches to analyzing qualitative data. Although these methods share similar processes, they emphasize different concepts.

Qualitative research often tries to preserve the voice and perspective of participants and can be adjusted as new research questions arise. Qualitative research is good for:

• Flexibility

The data collection and analysis process can be adapted as new ideas or patterns emerge. They are not rigidly decided beforehand.

• Natural settings

Data collection occurs in real-world contexts or in naturalistic ways.

• Meaningful insights

Detailed descriptions of people’s experiences, feelings and perceptions can be used in designing, testing or improving systems or products.

• Generation of new ideas

Open-ended responses mean that researchers can uncover novel problems or opportunities that they wouldn’t have thought of otherwise.

Researchers must consider practical and theoretical limitations in analyzing and interpreting their data. Qualitative research suffers from:

• Unreliability

The real-world setting often makes qualitative research unreliable because of uncontrolled factors that affect the data.

• Subjectivity

Due to the researcher’s primary role in analyzing and interpreting data, qualitative research cannot be replicated . The researcher decides what is important and what is irrelevant in data analysis, so interpretations of the same data can vary greatly.

• Limited generalizability

Small samples are often used to gather detailed data about specific contexts. Despite rigorous analysis procedures, it is difficult to draw generalizable conclusions because the data may be biased and unrepresentative of the wider population .

• Labor-intensive

Although software can be used to manage and record large amounts of text, data analysis often has to be checked or performed manually.

If you want to know more about statistics , methodology , or research bias , make sure to check out some of our other articles with explanations and examples.

• Chi square goodness of fit test
• Degrees of freedom
• Null hypothesis
• Discourse analysis
• Control groups
• Mixed methods research
• Non-probability sampling
• Quantitative research
• Inclusion and exclusion criteria

Research bias

• Rosenthal effect
• Implicit bias
• Cognitive bias
• Selection bias
• Negativity bias
• Status quo bias

Quantitative research deals with numbers and statistics, while qualitative research deals with words and meanings.

Quantitative methods allow you to systematically measure variables and test hypotheses . Qualitative methods allow you to explore concepts and experiences in more detail.

There are five common approaches to qualitative research :

• Grounded theory involves collecting data in order to develop new theories.
• Ethnography involves immersing yourself in a group or organization to understand its culture.
• Narrative research involves interpreting stories to understand how people make sense of their experiences and perceptions.
• Phenomenological research involves investigating phenomena through people’s lived experiences.
• Action research links theory and practice in several cycles to drive innovative changes.

Data collection is the systematic process by which observations or measurements are gathered in research. It is used in many different contexts by academics, governments, businesses, and other organizations.

There are various approaches to qualitative data analysis , but they all share five steps in common:

• Prepare and organize your data.
• Review and explore your data.
• Develop a data coding system.
• Assign codes to the data.
• Identify recurring themes.

The specifics of each step depend on the focus of the analysis. Some common approaches include textual analysis , thematic analysis , and discourse analysis .

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Research Article

A qualitative exploration of barriers to efficient and effective structured medication reviews in primary care: Findings from the DynAIRx study

Roles Data curation, Formal analysis, Methodology, Validation, Writing – original draft, Writing – review & editing

Affiliations Academic Unit for Ageing & Stroke Research, Bradford Teaching Hospitals NHS Foundation Trust, University of Leeds, Bradford, United Kingdom, Faculty of Medicine and Health, School of Medicine, University of Leeds, Leeds, United Kingdom

Roles Data curation, Formal analysis, Validation, Writing – original draft, Writing – review & editing

Affiliation Institute of Population Health, University of Liverpool, Liverpool, United Kingdom

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

Affiliations Institute of Population Health, University of Liverpool, Liverpool, United Kingdom, Directorate of Mental Health and Learning Disabilities, Powys Teaching Health Board, Bronllys, United Kingdom

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

Affiliation General Practice and Primary Care, School of Health and Wellbeing, University of Glasgow, Glasgow, United Kingdom

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

Roles Conceptualization, Supervision, Writing – review & editing

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

Roles Writing – review & editing

Affiliations Faculty of Medicine and Health, School of Medicine, University of Leeds, Leeds, United Kingdom, Leeds Institute for Data Analytics, University of Leeds, Leeds, United Kingdom

Roles Conceptualization, Writing – review & editing

Affiliation Department of Computer Science, University of Liverpool, Liverpool, United Kingdom

Affiliation Division of Informatics, Imaging & Data Science, University of Manchester, Manchester, United Kingdom

Affiliation NIHR Applied Research Collaboration North West Coast, United Kingdom

Affiliations Leeds Institute for Data Analytics, University of Leeds, Leeds, United Kingdom, School of Computing, University of Leeds, Leeds, United Kingdom

Roles Project administration, Resources

Affiliation Department of Electrical Engineering and Electronics, University of Liverpool, Liverpool, United Kingdom

Affiliation Merseycare NHS Foundation Trust, Liverpool, United Kingdom

Roles Conceptualization, Funding acquisition, Investigation, Methodology, Resources, Supervision, Writing – review & editing

•  [ ... ],

Roles Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Supervision, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Affiliations Centre for Experimental Therapeutics, University of Liverpool, Liverpool, United Kingdom, Liverpool University Hospitals NHS Foundation Trust, Liverpool, United Kingdom

• [ view all ]
• [ view less ]
• Aseel S. Abuzour, 
• Samantha A. Wilson, 
• Alan A. Woodall, 
• Frances S. Mair, 
• Andrew Clegg, 
• Eduard Shantsila, 
• Mark Gabbay, 
• Michael Abaho, 
• Asra Aslam, 

• Published: August 30, 2024
• https://doi.org/10.1371/journal.pone.0299770
• Reader Comments

Introduction

Structured medication reviews (SMRs), introduced in the United Kingdom (UK) in 2020, aim to enhance shared decision-making in medication optimisation, particularly for patients with multimorbidity and polypharmacy. Despite its potential, there is limited empirical evidence on the implementation of SMRs, and the challenges faced in the process. This study is part of a larger DynAIRx (Artificial Intelligence for dynamic prescribing optimisation and care integration in multimorbidity) project which aims to introduce Artificial Intelligence (AI) to SMRs and develop machine learning models and visualisation tools for patients with multimorbidity. Here, we explore how SMRs are currently undertaken and what barriers are experienced by those involved in them.

Qualitative focus groups and semi-structured interviews took place between 2022–2023. Six focus groups were conducted with doctors, pharmacists and clinical pharmacologists (n = 21), and three patient focus groups with patients with multimorbidity (n = 13). Five semi-structured interviews were held with 2 pharmacists, 1 trainee doctor, 1 policy-maker and 1 psychiatrist. Transcripts were analysed using thematic analysis.

Two key themes limiting the effectiveness of SMRs in clinical practice were identified: ‘Medication Reviews in Practice’ and ‘Medication-related Challenges’. Participants noted limitations to the efficient and effectiveness of SMRs in practice including the scarcity of digital tools for identifying and prioritising patients for SMRs; organisational and patient-related challenges in inviting patients for SMRs and ensuring they attend; the time-intensive nature of SMRs, the need for multiple appointments and shared decision-making; the impact of the healthcare context on SMR delivery; poor communication and data sharing issues between primary and secondary care; difficulties in managing mental health medications and specific challenges associated with anticholinergic medication.

SMRs are complex, time consuming and medication optimisation may require multiple follow-up appointments to enable a comprehensive review. There is a need for a prescribing support system to identify, prioritise and reduce the time needed to understand the patient journey when dealing with large volumes of disparate clinical information in electronic health records. However, monitoring the effects of medication optimisation changes with a feedback loop can be challenging to establish and maintain using current electronic health record systems.

Citation: Abuzour AS, Wilson SA, Woodall AA, Mair FS, Clegg A, Shantsila E, et al. (2024) A qualitative exploration of barriers to efficient and effective structured medication reviews in primary care: Findings from the DynAIRx study. PLoS ONE 19(8): e0299770. https://doi.org/10.1371/journal.pone.0299770

Editor: Kathleen Bennett, Royal College of Surgeons in Ireland, IRELAND

Received: February 16, 2024; Accepted: June 24, 2024; Published: August 30, 2024

Copyright: © 2024 Abuzour 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: All relevant data are within the paper and its Supporting Information files.

Funding: DynAIRx has been funded by the National Institute for Health and Care Research (NIHR) Artificial Intelligence for Multiple Long-Term Conditions (AIM) call (NIHR 203986). MG is partly funded by the NIHR Applied Research Collaboration North West Coast (ARC NWC). AW is partly funded by a Health and Care Research Wales Research Time Award (NHS-RTA-21-02). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. This research is supported by the NIHR ARC NWC. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Competing interests: No competing interests

Structured medication reviews (SMRs) were introduced in the United Kingdom (UK) in October 2020 and incorporated into the NHS England Directed Enhanced Service (DES) contract for 2021 [ 1 ]. SMRs represent a National Institute for Health and Care Excellence (NICE)-approved clinical intervention facilitating shared-decision making between clinicians and patients, to inform treatment decisions. The objective is to reduce medication-related harm in patients with complex or problematic polypharmacy [ 1 , 2 ]. While General Practitioners (GPs), pharmacists and advanced nurse practitioners (ANPs) who meet training criteria can conduct SMRs, the prevailing expectation is for clinical pharmacists within Primary Care Networks (PCNs) to assume primary responsibility as a commissioned service [ 3 ]. The varied methods employed by PCNs to proactively identify patients suitable for SMRs, and conduct these reviews, is contingent on available resources and capacity. Anecdotal evidence suggests that PCNs currently use limited digital tools, such as searching electronic health records (EHR) based on the total number of drugs prescribed or disease codes, to identify patients at risk of medication-related harm.

There is sparse empirical evidence reporting on the implementation of SMRs, their impact on patient outcomes, and the challenges faced by healthcare professionals (HCPs) and patients during SMRs [ 4 , 5 ]. This scarcity of evidence is unsurprising given that SMRs were introduced in 2020 amidst the COVID-19 pandemic [ 1 ]. Nonetheless, estimates suggest a percentage reduction in per-patient medicines following an SMR ranging from 2.7% to 9.9%, with up to 19.5% reduction in use for the highest-risk group in care homes [ 6 ].

Patients with complex multimorbidity and polypharmacy, whose medicines have not been optimised are at risk of adverse outcomes and medication-related harm [ 7 ]. The definition of complex multimorbidity is contentious [ 8 ] but here we are referring to patients living with four or more conditions, which is strongly associated with polypharmacy [ 8 , 9 ]. The use of data from EHRs to develop evidence-based digital health tools can be a promising resource to assist HCPs in conducting targeted, efficient and effective SMRs.

The NIHR-funded DynAIRx study (Artificial Intelligence for dynamic prescribing optimisation and care integration in multimorbidity) aims to develop AI-driven tools that integrate information from electronic health and social care records, clinical guidelines and risk-prediction models in order to support the delivery of SMRs [ 10 ]. The DynAIRx project will produce machine learning models, dashboards, and different tools including Causal Inferencing to provide clinicians and patients with evidence-based information to prioritise patients at most risk of harm and/or patients most likely to benefit from SMRs. Aligned with the NICE multimorbidity guidelines, [ 7 , 11 ] DynAIRx will focus on three patient groups at high-risk of rapidly worsening health from multimorbidity: (a) individuals with mental and physical health co-morbidity, [ 12 – 14 ] in whom the prescribing for mental health improvement can lead to adverse physical health consequences; (b) those with complex multimorbidity (four or more long-term health conditions taking ten or more drugs); [ 9 , 15 ] and (c) older people with frailty who are at high risk of adverse outcomes [ 16 ].

The initial step towards introducing AI-driven prescribing support tools into clinical practice involves understanding the current scope of work, how SMRs are presently undertaken and by whom, the time required in real-world clinical practice to undertake them, and crucially, investigate what determinants act as potential barriers to efficient and effective SMR implementation. The aim of this study was to explore how SMRs are undertaken and what barriers those undertaking them (and receiving them) experience.

Participants and recruitment

This study sought to recruit health care or management professionals working in health care settings (primary care in the community or secondary care in hospital services) across the UK where review of prescription medications is a regular part of the clinical workload. This included those working in General Practice, secondary care hospital services (geriatric medicine, clinical pharmacology, falls clinics, mental health practitioners), clinical commissioning of services or management of clinical services (practice managers), and pharmacists, including PCN pharmacists (those involved in conducting SMRs across several neighbouring GP practices). Patient participants included those with (a) multiple and physical co-morbidities; (b) complex multimorbidity; (c) older people with frailty. Patient and carer representatives of the three key multimorbidity groups outlined above were also invited. This included recruiting adult individuals (over the age of 18) with/or caring for someone with multiple (4 or more) long-term health conditions, co-existing mental and physical health problems, prescribed ≥10 regular medications, frailty.

Purposive sampling identified potential HCP participants that were known to be involved in medicines optimisation services through the researchers own clinical and professional networks. Snowballing (wherein research participants were asked to assist the recruitment by attempting to identify other potential participants) was employed to identify contacts through existing service providers along with advertisement in GP forums and at national events for individuals participating in clinical polypharmacy research [ 17 ]. Purposive sampling of potential patient representatives were identified through advertisement across the NIHR Applied Research Collaboration public advisor networks and through research databases at the researchers host institutions. Potential participants were provided with study information and an invitation to participate. Participants received comprehensive briefings from researchers about the study, and written consent was obtained prior to the focus group or interview participation. Withdrawal of consent was permitted at any stage, even after the focus group or interview.

Ethical approval

The Newcastle North Tyneside Research Ethics Committee (REC reference:22/NE/0088) granted ethical approval for the DynAIRx study.

Data collection

Data collection occurred from November 2022 to November 2023. Focus groups and semi-structured interviews were conducted to gather participant views. Focus groups were utilised for patient participants in order to stimulate discussion of common and shared experiences. Individual interviews supplemented the HCP focus groups in order to ensure as many HCPs could be involved as possible owing to time constraints for some HCPs. Focus group topic guides and interview schedules were developed and refined by the clinical members of the research team (LW, AA, AW, FM, AG) and tailored to HCP and patient groups. The topic guides (see S1 Appendix ) included questions exploring the experience of conducting or receiving SMRs, barriers to undertaking them and opinions on key medication challenges in multimorbidity groups from both the clinician and patient perspective. Sessions occurred in person and online (via Microsoft Teams), lasting from 49 to 109 minutes. Audio recordings underwent verbatim transcription and anonymisation to remove any potentially identifiable information. Each participant was assigned a code, and recordings were subsequently deleted. Data collection and analysis occurred concurrently. The Consolidated Criteria for Reporting Qualitative Research checklist was used to ensure comprehensive reporting of our qualitative study (see S1 Appendix ). No participant withdrew consent for their data to be used in the study.

Data analysis

Transcripts were imported into QSR NVivo 12® and analysed using thematic analysis [ 18 ]. Transcripts were read to familiarise researchers with the data. Inductive reasoning guided the initial coding by AA and SW, who collated and examined codes to identify themes. The multidisciplinary coding team (AA, SW, LW, AW, FM) consisted of clinicians and researchers, and engaged in regular reflexive practices to ensure a rigorous and transparent qualitative study. Recognising the diverse expertise and perspectives within the team, we held regular coding clinics where codes and initial themes were reviewed and discussed. By openly sharing our perspectives and challenging each other’s viewpoints, we aimed to balance our interpretations and avoid overemphasis on any single disciplinary lens. This allowed us to critically examine how our professional backgrounds and assumptions might shape the interpretation of findings. These reflexive sessions were instrumental in identifying and mitigating biases, ensuring that our analysis remained grounded in the participants’ narratives rather than our preconceptions. Themes were defined and supported by quotes. Detailed notes of discussions and developments were kept to ensure analytical rigour and plausibility [ 19 ]. The remaining dataset underwent hybrid inductive and deductive thematic analysis using the inductively defined themes, with codes and themes iteratively revised. Once all team members agreed no new codes or meaning to influence thematic analysis were emerging, we assumed saturation was achieved [ 20 ]. At this point, further recruitment was stopped.

Six focus groups with HCPs (n = 21) and 3 patient focus groups (n = 13) were conducted. A further five semi-structured interviews with HCPs took place (see Table 1 for details).

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https://doi.org/10.1371/journal.pone.0299770.t001

Two overarching themes developed from analysis of the HCP and patient interviews and focus groups, within which a number of sub-themes emerged:

• Limited availability of digital tools to assist in identifying and prioritising patients for a SMR
• Organisational challenges and patient factors affecting patient engagement for a SMR
• Time consuming “detective work”
• SMRs require multiple appointments
• Influence of healthcare context on delivering SMR
• Factors influencing deprescribing discussions
• Poor communication and data sharing between primary and secondary care
• Difficulties managing mental health medication for prescriber and patient
• Challenges around anticholinergic medication optimisation for prescriber

Fig 1 displays each key theme from this study and a detailed list of the barriers to each stage of the SMR process. Supplementary quotes for each theme can be found in S2 Appendix .

https://doi.org/10.1371/journal.pone.0299770.g001

• a. Limited availability of digital tools to assist in identifying and prioritising patients for a SMR

PCN pharmacists reported proactively identifying and prioritising patients to conduct SMRs. Patient identification was based on the criteria outlined by the DESGP contract, which includes patients in care homes (both nursing and residential facilities), individuals with complex multimorbidity and polypharmacy, urgently referred patients, older individuals encountering medication-related harms, and patients recently discharged from hospital. HCPs also referenced using available healthcare management automated search tools within the EHR, including ‘Ardens search’ [ 21 ] and ‘ProActive Register Management (PARM) diabetes’ [ 22 ], to identify pre-determined conditions, prescribing alerts and other variables that form part of the practice workload. They also used targets from the Investment and Impact Fund (IIF) for patient identification (IIF is an incentive scheme where PCNs can improve health and the quality of care for patients with multimorbidity), which participants described as beneficial but a waste of resources in the context of SMRs which should focus on patients with complex multimorbidity and polypharmacy [ 23 ]. Despite this, HCPs noted a limited number of digital tools to assist in identifying and prioritising patients for a SMR.

“I’ll be honest that we’ve not really had any tools that have been developed specific for supporting SMR.” (Pharmacist 2, Interview)

Since the introduction of EHRs in the NHS, HCPs are expected to assign ‘SNOMED codes’ to document patients with specific diagnostic, symptom or treatment codes in a logical hierarchical manner to specify clinical information [ 24 ]. These codes facilitate searches for specific medical conditions, symptoms and treatments within the GP EHR, facilitating the identification of individuals requiring an SMR. Pharmacists noted that EHR searches do not adequately consider the complexity of patients, making it challenging to stratify those that would benefit most from an SMR. Additionally, participants highlighted a lack of sensitivity and specificity in the current search mechanisms (meaning the searches either do not identify all the intended patients or identify too many).

“ The actual indicator that my team has been focusing on is supposed to be the ones where patients are prone to medication errors … but when I actually look at the patients, I haven’t got a clue why the actual computer system has decided that most of the time.” (Participant 1, Pharmacist FG1)

HCPs were concerned that the identification of patients who would benefit from an SMR could exceed the clinical capacity of the staff available to meet the need. They felt that any digital tool used to prioritise patients’ needs should match the clinical capacity of the practice.

“ The tools have to be a bit cleverer … We can generate a list of patients today … PCNs at the moment essentially do that, but what you have to do is almost the list that’s generated to the capacity … People would not switch it on if they felt that it could generate lots of patients you would not then see.” (Policy-maker, Interview)

• b. Organisational challenges and patient factors affecting patient engagement for a SMR

GPs or secondary care clinicians (excluding clinical pharmacologists) often conducted opportunistic medication reviews, compared to the proactive SMRs conducted by PCN pharmacists. In alignment with the DES requirements, HCPs described how the task of conducting an SMR was contingent upon organisational contracts, practice size, and staff availability. The presence of a PCN pharmacist for SMRs facilitated streamlined tasks, enabling GPs to focus on patients with more complex medical profiles. GPs voiced concerns about burnout in areas where demand for SMR exceeded the clinical capacity to undertake them. This challenge was particularly pronounced in regions of lower socioeconomic status where patients often presented with complex multimorbidity and polypharmacy at a younger age, especially those with co-morbid mental and physical health problems. Moreover, respondents felt that patients residing in deprived areas were less likely to attend scheduled SMRs, compelling GPs to resort to opportunistic reviews. This highlights potential inequity in access to SMRs and overall health surveillance.

“In the poorer area of the practice there’s no clinical pharmacist, that’s all done opportunistically, if done at all, by the GP partners there. I think that there’s a couple that are approaching burn out, if not complete burn out and the practice is almost run by locums. So, when I’m going in there, it’s quite tough and I will often see medications that are inappropriately prescribed, polypharmacy, several of the same drugs, and I will opportunistically undertake a structured medical review.” (Participant 3, GP FG1)

• c. Time consuming “detective work”

Whether HCPs identified patients proactively or opportunistically, the preparation time for a medication review ranged from 10 minutes to 1 hour. Several factors influenced this preparation time, including the availability of information, case complexity, barriers to accessing information, information density, and time constraints. The challenge in finding and collating information within the patient’s clinical records constituted a significant portion of the preparation time. For instance, discharge letters from hospitals are often located as attachments within the patient record, requiring HCPs to locate and read the letter. These necessary preparatory activities take away from the face-to-face time available with the patient.

“ Probably double the amount of prep time than it was actually with the patient. I mean, granted we did spend a while with the patient because we both like to talk, and the patient certainly did, but I think, and that’s the problem, isn’t it? You get the best information out of your patient when you let them talk and you let them tell you lots of things that you wouldn’t normally ask, but you haven’t got the time to do that so it’s tricky isn’t it to find the balance. But the biggest thing with the prep time was getting the information.” (Participant 3, Pharmacist FG1)

HCPs also conveyed frustration regarding the substantial time required to determine the original indication for a particular prescription and the ongoing necessity for it, even during major transition periods such as a patient’s admission to a care home.

“ We don’t get enough actual structured reviews, so they’ll be getting put on medication, people in care homes, and then left on those medicines. There’s no recognition of the changes. As you move in a care home, you’re generally more frailer, your renal function, haematic function might not be as great and, you know, you’re not moving as much, so your need for some medicines might not be as great as it was when the medicine was first started. ” (Policy-maker, Interview) “So along with what you said about deprescribing Selective Serotonin Reuptake Inhibitors (SSRIs) , especially , you know they’ve been on them for 4–5 years and they are adamant they don’t want to reduce them or stop them or have any sort of conversation about it , yeah , they’re quite challenging I think . Also , I think sometimes you can’t quite work out what medications people have been on . I mean if we talk about SSRIs they may have tried multiple different ones in the past and sometimes it’s difficult to work out what they’ve been on without having to go through the long , long list searching all the different medications that are SSRIs that they’ve tried . It would be so helpful if you know it could just bring up yeah been used before , and then know which one you could try…knowing that you want to try a different one . ” (Participant 6, GP FG1)

Although it is possible within the EHR system to link the prescription of an individual drug to its clinical indication, anecdotal evidence suggests this is time consuming and therefore may not be done in clinical practice.. As such, indications for prescribed medicines are recorded in the free text for the consultation which can easily become obscured over time within the extensive information contained in the clinical record. Examining the clinical free text for this information was emphasised as a challenge in efficiently conducting SMRs.

“ Although in my letters I would clearly state to the GP why I am prescribing the second line antipsychotic just so that people know, but over time that tends to get lost, the rationale for that prescribing tends to get lost and before you know you leave post, somebody else comes and begins to increase that second antipsychotic you know, so that becomes a problem. ” (Participant 1, Psychiatrist FG)

Moreover, existing EHRs are not adept at presenting patient histories in a manner conducive to HCPs pinpointing areas for potential deprescribing. This deficiency in the system leads to a cumulative high pill burden for patients, as illustrated in the quote below.

“ At the age of [ 18 – 20 ], I was diagnosed with bipolar. I am now [71–74] and I have lived for that period of time on medication, a lot of medication actually … I counted the number of tablets and my boxes on my bedside the other day and there was 13 different tablets, so that is what I am being prescribed by my GP. ” (Patient 1, Mental and physical co-morbidities FG)

Patients also expressed uncertainty about the initial reasons for starting medications. Patients reported receiving medications for many years and being unsure whether the medication was still necessary.

“ She is also on a daily injection of adult growth hormone which another consultant put her on at the time and she has been having them for probably 10 to 15 years, and no-one seems to know now who initially prescribed it and who is in charge of that. I am concerned, does she really need them? She is having them every day … Initially it was an asset to go with the immunodeficiency but now I don’t really know. ” (Patient 5, Mental and physical co-morbidities FG)

• d. SMRs require multiple appointments

SMRs typically lasted a minimum of 30 minutes, often extending beyond this duration. The variability in duration was contingent upon the patient’s complexity and the focused nature of the review. Allowing adequate time to address broader health concerns was deemed crucial, enabling the identification of potential issues requiring deeper exploration by the clinician.

HCPs acknowledged that SMRs were not a singular event, and patients might necessitate multiple appointments for a comprehensive review. Consequently, EHR systems were recognised as needing functionality to alert HCPs to schedule additional appointments after the initial SMR, emphasising the iterative and ongoing nature of medication reviews.

“ The first time I see patients, you want almost a bit of a holistic conversation, but actually when you start making interventions you go with what matters most to the patient or where the biggest risk is and you then table the others … You can imagine that being 2 or 3 hours in 4 different appointments before you get to the bottom of where you want to be … I think we had to contact on average about 2 to 3 times per patient, but there were more complex patients as well … I don’t think you can stop medicines or optimise medicines without seeing that patient again as least once. ” (Policy-maker interview)

Patients expressed a desire to be involved in the decision-making during reviews and valued the opportunity to discuss issues such as how medications fit into their routines and other resources that may be available to them.

"I’ve got a series of chronic things, take a load of pills and they’re each for separate things, and I have been concerned for years whether there’s any interaction with them, between them. And also they make me feel tired all the time and perhaps there are some of them where I could actually get rid of them." (Patient 1, Older people with frailty FG)

• e. Influence of healthcare context on delivering SMR

The duration of conducting a SMR was also contingent on the specific healthcare setting in which it took place. One pharmacist highlighted that SMRs conducted in care homes lacked a strict time limit and were oriented towards achieving specific outcomes, such as the number of medicines deprescribed in particular patient groups. This reflected the contextual variability in the conduct and objectives of SMRs, emphasising the need for flexibility in the approach based on the healthcare environment and patient population.

“ We were just told take whatever time you need but because we were not measured on the quantity, we were measured on the quality, and we were recorded the number of medicines basically stopped and in particular groups actually so, and then that would have gone on the report because that was the way of showing what we were doing and the basic value for money I guess .” (Participant 1, Pharmacist FG1)

The emphasis placed on a medication list varied depending on the reviewer and the healthcare setting. A pharmacist working in secondary care articulated a tendency to allocate less attention to certain medicines in a hospital setting, prioritising focus on medications more likely to cause harm. This perspective highlights the nuanced approach that different HCPs may adopt based on their expertise and the specific context in which they operate.

“ At the moment, the bisphosphonate would be something that I’m less concerned about it a very high acuity environment, that’s the thing that I’m probably going to, maybe if I get a chance, write in the discharge summary for the GP to check up on whether or not that’s still appropriate. Whereas I’m chasing those big harms .” (Participant 2, Pharmacist FG1)

• f. Factors influencing deprescribing discussions

Discussions around deprescribing between HCPs and patients were reported to be influenced by several factors. These included the specific type of medicine to be deprescribed, the patient’s willingness to discontinue the medication, sociodemographic location, availability of additional health services in the area, whether the medication was initially prescribed in primary or secondary care and the existence of pre-established stopping criteria for certain medications (e.g., bisphosphonates for more than 5 years). Additionally, HCPs and patients acknowledged a degree of reluctance to engage in deprescribing due to perceived potential risks associated with the cessation of certain medications. These multifaceted factors contribute to the complexity and individualised nature of deprescribing discussions within the healthcare context.

“I find it really, really difficult because all of the guidelines will say, oh, you should have this patient on statins, etc., and you think I really probably shouldn’t they’re 95, but having stopped them in the past then a patient unfortunately ends up with a stroke, they go to hospital, the hospital tells them it’s because their GP stopped their statin and puts them back on .” (Participant 2, GP FG2) “ The antidepressant one is interesting . So , I did work for 9 years in a really deprived area . . . SSRIs for a long time and they were pretty reluctant to come off it but usually willing to accept if it didn’t work out just put them back on it . It just meant in a much more middle-class area there’s the opposite where they’re all desperate to come off it and probably coming off it far too soon . So , I don’t think it needs to be doctor-led , it seems to be more about their external pressures and there’s been a lot of areas done in deprived communities with link workers and social prescribers and I think if you’re going to look at polypharmacy in these sort of groups then that’s probably the way to do it stopping all their meds .” (Participant 4, GP FG1)

In one case, a pharmacist highlighted the challenges associated with decision-making when optimising medicines for complex, younger patients, emphasising the impact of side-effects on their quality of life. Equally, the importance of considering quality of life in frail older adults with polypharmacy was acknowledged, although perceived as less complicated than in younger adults.

"I know well that’s it isn’t it, it’s not necessarily that they’re a complex medicine it’s that there is evidence to say that this can prolong your life but it’s causing them that much upset, so it’s, for me it’s not necessarily the, I can’t think of any particular group of drug its more the younger you get, you know 50 is very young and that you have got a lot of life left to live so that’s when it becomes more of a clinical decision for me that as a pharmacist I don’t feel like I would be able to make" (Participant 1, Pharmacist FG1)

• 2. Medication-related Challenges

Potential for medication-related harm identified by our key stakeholder groups included issues with specific medicines, conditions, and risky medication combinations; mental health medications; prescriptions from specialists; anticholinergic medicines; difficulties in determining prescription timelines to assist in decision-making; challenges with younger complex patients; and siloed care.

• a. Poor communication & data sharing between primary and secondary care

HCPs identified the challenge of extracting information from hospital discharge letters as a key source of frustration. Patients, in particular, assumed that EHRs seamlessly connected primary and secondary care, and in some cases, their community pharmacy. This assumption left patients bewildered and, in certain cases, reliant on the HCPs knowing the complete narrative behind their health records. The disjointed communication and misconceptions surrounding record integration emphasised the need for improved interoperability to enhance the continuum of care.

“ We will be waiting a week for an outpatient letter to come through and it’s really confusing, stop this, change that, increase the dose here, and you’re kind of stuck in the middle. So sometimes the patient will have left that meeting there and it will be ‘like go and see your GP and they will do this bit’, well [that’s] not happening until I’ve got that letter. There is that real mismatch of communication. ” (Participant 1, GP FG2) “ When the repeat prescription came through , despite the fact that the surgery had received the discharge letter , everything was all wrong , and this is just one of those things that happens . So , you get a review and it is whether that data from that review and the story behind it and who it goes back to and whether it is acted on , I think that is important .” (Patient 3, Complex multimorbidity FG)

Communication gaps between GPs, specialist clinicians, and patients were evident due to varying expectations. GPs expressed challenges in managing specialist medications with patients, including concerns about patients’ ability to self-manage their medicines. These challenges highlighted aspects of fragmented care between primary care and specialist clinicians. HCPs also cited difficulties and reluctance in communicating and potentially engaging in conflict with specialist doctors. Participants described specialist doctors as lacking a holistic view when prescribing for patients, favouring certain medicines, and having limited knowledge in drug interactions.

“I think multidisciplinary is key, however when I notice that I liaise with specialists, depending on who I speak to, their drug is the most important and trying to get a consensus about what is best for the patient is obviously one of the challenges like that’s how we got in this situation to begin with you know, so I do find that’s one of the challenges. so, I think you need someone who is you know, who is a specialist but has also got a sort of holistic view of patient care as well which doesn’t always happen in secondary care, but sometimes does.” (Participant 3, Polypharmacy FG)

Participants noted that central nervous system medicines had complicated medication regimens and hence required more coordinated care and responsibility between the specialist prescriber and GP. Addressing these challenges calls for enhanced collaboration, knowledge exchange, and a holistic approach to patient care between primary care and specialist clinicians.

“ I find it, with the pain management clinic, they stop medication, give you a list of all these other tablets you need to start to see how things go and then sort of leave you to it, discharge the patient in your hands and expect you to sort of manage it all. And the same thing is with migraine and headaches from neurology. That’s just a minefield … I think when you’re in specialty, you feel that you can give any sort of long protracted complicated regime and the patient is just going to manage it because that’s the only medication that you think that they’re on. So yeah, they can be quite difficult .” (Participant 5, GP FG1) “ He [GP] says that we can’t actually change any medication to do with your bipolar , that has got to be done by your psychiatrists … I don’t think they would change anything to do with psychiatry .” (Patient 1, Mental and physical co-morbidities FG)

• b. Difficulties managing mental health medication

Mental health medication and management emerged as a consistent sub-theme across key HCP stakeholder groups, irrespective of their professional background. Both doctors and pharmacists described difficulties in monitoring and adjusting psychiatric medicines, including uncertainties about how to address specific issues related to psychiatric medicines. Participants expressed a sense of being ‘out of their depth’, particularly concerning antipsychotic medicines. They conveyed a lack of confidence in assessing the risks and benefits of antipsychotic prescribing, feeling deskilled in this specific area of medication management, and finding it challenging to safely challenge prescribers. This sense of unease prompted participants to seek ways of contacting the mental health team, only to encounter additional hurdles, such as difficulties in locating relevant information within patient records to facilitate multidisciplinary coordinated patient care.

“ But the other one is someone with very complex psychiatric problems, still maybe under the mental health team, and I haven’t got really access to the details apart from maybe I’ve got, you know, some of the other diagnoses. But if I think maybe one of those drugs is potentially causing more harm than could then I’m not clear how then to action that and who to speak to and who were they actually seeing ” (Participant 1, Polypharmacy FG)

For example, a clinical pharmacologist explained that evaluating the success of managing antipsychotics is not as straightforward as assessing physical health conditions. This complexity may contribute to the observed lack of confidence among HCPs when it comes to deprescribing psychiatric medicines. The nuanced nature of mental health outcomes, compared to more tangible markers of success in physical health, adds an additional layer of intricacy to the decision-making process in psychiatry. This includes the complexity of managing mental health medication.

“ The biggest challenge group that I think we face in a deprived area is the patients who are on long term opioid medication, long term neuropathic meds, they’ve probably got a diagnosis of fibromyalgia, they’ve probably got personality disorder plus / minus mental health problems. And the issues that we have is that they’ve almost been sequentially added medication on because GPs don’t really often know what to do with them unless you have a special interest in that field like I do. And when they go and see pharmacists, they are very challenging to pharmacists and pharmacists don’t have the clinical knowledge to be able to sift through what can often be quite dramatic presentations. ” (Participant 1, GP FG1)

• c. Challenges around anticholinergic medicines

Anticholinergic medicines, which inhibit the neurotransmitter acetylcholine involved in numerous physiological functions, has been associated with adverse outcomes such as cognitive decline and falls, particularly when multiple anticholinergic medicines are used concurrently (termed anticholinergic burden) [ 25 , 26 ]. GPs, clinical pharmacologists, and pharmacists described the importance of reviewing and deprescribing anticholinergic medicines where possible. However, the process of calculating anticholinergic burden (ACB) in frail, older adults is time consuming, primarily due to the absence of automated calculators embedded within the EHR system.

Doctors and pharmacists expressed frustrations around the re-prescribing of anticholinergics after deprescribing them. They attributed the persistence of high ACB to limitations in prescribing guidelines and a scarcity of alternative options to replace anticholinergic drugs. These challenges highlighted the need for tools within EHR systems to facilitate efficient assessment of ACB, alongside a broader exploration of prescribing guidelines and alternatives to enhance deprescribing practices.

“ One of the things that I often see in general practice is that there’s lots of anticholinergics, usually amitriptyline because it’s kind of given out for other reasons for what it’s licensed for. So, sleep is probably the most common thing that I see it used for, or avoiding long term opioids in chronic arthritic pain, and often that’s because we have other options for them but we’re not allowed to prescribe them. So, melatonin is probably the most common thing that we could put them on which has a lot better safety profile, but we are just completely discouraged from prescribing it. And likewise access to other interventions that would help arthritic pain rather than putting them on NSAIDS which obviously carry risk or opioids which aren’t overly effective outside the acute pain window. It’s often the lack of other stuff that raises all of the anticholinergic burden. ” (Participant 1, GP FG1)

Participants welcomed any digital tool that could streamline routine work processes, including information retrieval, automated dose calculations, and assessing the risk of developing diseases to optimise medicines during a SMR in a patient-centred manner, with the goal of enhancing efficiency in the medication optimisation process.

Medication reviews by HCPs can take significant preparation, and are time consuming, primarily due to the need to gather and understand patient information and to develop an understanding of a patient’s medical history and social circumstances. In addition, currently, there is no easy way to identify from the EHR which patients are at greatest risk of medication-related harm and those most likely to benefit from an SMR. The EHR systems used in primary care contain enormous volumes of information which becomes particularly challenging and time-consuming to navigate for complex individuals living with multiple long-term conditions and taking many medications. The way that information is organised in the system leads to a large proportion of time spent linking medications to their original indication and examining the patient journey. This time could be better spent discussing shared decisions with the patient. The EHR has not evolved in line with increasing patient complexity. The findings of this report emphasise the need for enhanced functionalities in EHRs to support effective medication management in the context of deprescribing discussions where a nuanced understanding of a patient’s medication history is crucial.

Our study has highlighted the challenges facing those undertaking SMRs in more socioeconomically disadvantaged areas, where people experience multimorbidity (and co-existent polypharmacy) 10–15 years earlier than their affluent peers [ 27 , 28 ]. These populations have complex healthcare needs at a younger age, the care of which falls to the already over-stretched GPs. Areas with greater socioeconomic disadvantage often have lower health literacy, resulting from a combination of lower educational attainment, economic barriers like the need to prioritise food and heating over health seeking, and psychosocial stressors affecting decision-making relating to health [ 29 , 30 ]. Health literacy applies not only to the patient but to the clinician who may also be unaware of the psychosocioeconomic situation of the patient, leading to a communication gap when discussing the risk and benefit of medicines to reach a shared-decision [ 31 – 33 ]. Accordingly, complex conversations involving numeracy calculations of risk may take longer and require repetition, but may also be of less priority for the patient and/or carer than other more immediate life concerns.

As preparation time is repeatedly cited as a barrier to effective SMR, a potential solution that would support SMRs in those with lower health literacy should include any digital intervention that saves on preparation time. This would enable more time for the clinician to engage with the patient and discuss complexities around risk and benefit, which would go some way to addressing the existing health disparity that affects those experiencing socioeconomic disadvantage. For HCPs working in areas of socioeconomic deprivation, lack of HCP capacity alongside patients declining SMR invitations were cited as barriers to undertaking SMRs. Moreover, HCPs described the usefulness of a system to identify availability of different health services in surrounding areas (e.g. weight management service) [ 27 , 28 ]. A recent study co-produced SMR resources to empower patients in their healthcare and support them in making the most out of their SMR. This included producing resources in a number of different languages including audio recorded resources for patients with visual impairment [ 34 , 35 ]. Embedded links to resources for HCPs to provide to patients before and/or after an SMR can be one potential way to utilise digital health and empower patients to reduce inequity in access to healthcare.

Our study also highlighted medication-related challenges such as difficulties managing mental health, specialist and anticholinergic medications. HCPs reported that a lack of alternatives to medication for symptom management hampered their ability to optimise some of the more potentially harmful medication classes such as opioids, anti-depressants, anticholinergics and gabapentinoids. Non-pharmacological alternatives, where appropriate, such as counselling need to be readily and equitably accessible for this approach to be considered a reliable option [ 36 ]. Mental health medication management stood out as a consistent challenge. HCPs in our study, regardless of their professional background, expressed difficulty in monitoring and adjusting psychiatric drugs. There was also a general lack of confidence and skill when it came to monitoring and adjusting antipsychotic medications, with the measurement of success in managing these medications being ambiguous. This is consistent with previous studies that note GPs lack of confidence in managing patients with serious mental health illness [ 12 , 37 ]. One recent study reported that less than half of GP trainees in England and Wales have trained in a mental health setting between 2013 and 2015 [ 38 ]. In addition to the need for HCPs in primary care to become trained to address issues related to psychiatric medicines, EHRs must include basic information about the indication for the prescribed psychiatric medicine and the appropriate mental health team contact details for GPs to be able to address these issues. This would have the potential to enable multidisciplinary coordination of care with mental health patients.

Another challenging group of medicines was those with anticholinergic effects. This drug class was also a recurring issue among GPs, clinical pharmacologists, and pharmacists. HCPs found it time consuming to calculate the ACB in frail, older adults. Although there are several ACB scales available that have been developed and validated, participants stated that automated calculators to calculate ACB are not easily accessible or embedded into EHRs. In addition, there is considerable variability between anticholinergic scales making it difficult to ascertain which scale to use to calculate ACB [ 39 ]. As such, taking the time out to include every medicine a patient is taking to calculate their ACB is time consuming, reducing opportunities for potential deprescribing discussions with patients.

Limitations

This study was conducted in the UK, which provides universal access to healthcare. However, findings from our study may also be applicable internationally to other health systems which operate a universal social insurance model where there is a primary care and secondary care gatekeeping model, including the need for HCP coordination [ 40 , 41 ] or deprescribing challenges [ 42 , 43 ]. This study is part of a larger qualitative study examining both barriers to SMRs and potential digital solutions, including AI-assisted approaches. As such, the HCP participants likely included a number of clinicians with a particular interest in digital-driven solutions in healthcare. We sought to include a wide variety of HCPs from different practice backgrounds in order to mitigate this. In addition, some of the focus groups contained unexpected small numbers of clinicians at one time, owing to the competing demands on clinician time. However, the data collected were rich and contributed significantly to achieving thematic saturation. The insights gained from these discussions were consistent with those from larger groups, reinforcing the validity of our findings.

Conclusions

There are few useful digital tools that can identify patients that would benefit most from an SMR or monitor the effects of medication optimisation when medicines are altered. Our findings showed that significant time is needed to prepare and conduct a SMR, with complex patients sometimes needing multiple appointments to enable a comprehensive review. The DynAIRx project will use findings from this study to address the barriers of conducting an SMR by producing dashboards and visualisations to summarise the patient’s medical journey; develop digital tools to prioritise patients that would benefit most from an SMR; and identify optimal interventions for specific multimorbidity and polypharmacy patient groups.

Supporting information

S1 appendix. topic guides for interviews and focus groups and coreq checklist..

https://doi.org/10.1371/journal.pone.0299770.s001

S2 Appendix. Table containing additional explanatory quotes relating to subthemes.

https://doi.org/10.1371/journal.pone.0299770.s002

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Study design in qualitative research--2: Sampling and data collection strategies

Affiliation.

• 1 Center for Organization and Delivery Studies, Agency for Healthcare Research and Quality, Rockville, MD 20852, USA.
• PMID: 14742088
• DOI: 10.1080/13576280050074543

In two prior papers in our series on qualitative research [Frankel & Devers (2000a, 2000b) Qualitative research: a consumer's guide, Education for Health, 13, 113-123; Frankel & Devers (2000) Study design in qualitative research-1: developing research questions and assessing research needs, Education for Health, 13, 251-261], we examine two critical issues in qualitative research design: sampling, including identifying and negotiating access to research sites and subjects, and data collection and management. We describe these two key steps in the qualitative research design process, discuss challenges that often emerge when pursuing these steps, and provide guidelines for addressing them. Qualitative research most often uses "purposive," rather than random, sampling strategies. A good understanding of these sampling strategies and why they are used is central to designing a credible qualitative study. In addition, given the real-world context in which most qualitative research is carried out, identifying and negotiating access to research sites and subjects are critical parts of the process. We also provide suggestions for developing and maintaining productive and mutually satisfying research relationships with sites and subjects. Finally, data collection and management are often neglected subjects in qualitative research. We offer practical advice on how to collect and manage qualitative data, including factors to consider when deciding how structured the data collection process should be, the pros and cons of audio- and/or videotaping compared with note-taking, and tips for writing up field notes and document management. A forthcoming, final paper in the series will focus on qualitative data analysis and the publication of qualitative research results.

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Older people’s experience and related factors while receiving home-based long-term care services: a qualitative study

Arūnė norvilaitė.

1 Department of Nursing, Lithuanian University of Health Sciences, Kaunas, Lithuania

Jamesetta A. Newland

2 Rory Meyers College of Nursing, New York University, New York, USA

Aurelija Blaževičienė

Associated data.

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

Home-based care may cover anything from 24-hour support for people with a disability, to short-term post-discharge care, or to periodic assistance with simple tasks such as domestic aid for frail older people. The process can be complex and time-consuming and requires coordination between the individual, their family caregivers, and healthcare providers. Receiving care at home can also lead to social isolation as older people may have limited opportunities for social interaction. This study aimed to investigate older people’s experience and related factors while receiving home-based long-term care services.

A qualitative study was used. Face-to-face individual interviews were conducted with people who were receiving nursing care in their homes ( N  = 17) and analyzed through thematic analysis.

Analysis of interview data resulted in the identification of three major themes that captured participants’ personal experiences regarding long-term care in the home: (1) Challenges faced by older people receiving long-term care at home; (2) The impact of home care services on people’s social well-being; and (3) Older people’s contradictory emotions regarding care delivery.

Conclusions

Findings of the study revealed that the most important and challenging factors in home care from the perspective of older people were social well-being, religious needs, and physical needs. They considered the nurses who provided these services as family members and the most significant helpers in their daily activities. Participants expressed a desire for more services in the future.

Introduction

Aging and the rapid increase in the number of older people is a global problem driven by low birth rates and rising life expectancy. The World Health Organization (WHO) estimates that by the year 2050 the global population of individuals aged 60 years and above will reach a staggering two billion. Notably, about 80% of this older population is expected to reside in developing countries [ 1 , 2 ]. These structural changes are increasing the need for long-term care in people’s homes. Long-term care services at home are generally more convenient and cost-effective than care provided in healthcare institutions, and they can be as effective [ 3 , 4 ]. Home care reduces hospital admissions that are financially more costly than home care. And the effectiveness of services can be measured by quality of life, which is considered a main evaluation criterion [ 4 ].

The WHO defines home-based care as “any form of care given to ill people in their homes, including physical, psychosocial and palliative activities” [ 5 ]. Home-based care may cover anything from 24-hour support for adults with a disability, to short-term post-discharge care, or to periodic assistance with simple tasks such as domestic aid for frail older people [ 6 ]. Receiving nursing care at home can provide older people with a greater sense of independence and comfort in a familiar environment; however, this arrangement can also present unique challenges. Some challenges include older people’s desire for independence, which can be influenced by their health conditions, frailty, and the need for assistance with limited activities of daily living. Additionally, in an effort to ensure comfort and independence, people often face isolation, losing social contacts as they remain in their own homes. Family members often provide most of the care for older people receiving care at home which can be emotionally and physically challenging, especially if they have other responsibilities such as work or caring for their own families [ 7 ]. Many older individuals receiving long-term care at home have one or more chronic health issues. Therefore, informal caregivers providing care at home should be well-prepared to manage these conditions. It is also important for relatives to be aware of respite care or support services that can ease the burden on family caregivers [ 8 ]. The process can be complex and time-consuming and requires coordination between the individual, their family caregivers, and healthcare providers [ 9 – 11 ]. Older people receiving care at home may be at risk for falls or other accidents due to physical limitations or cognitive impairment. Ensuring that the home environment is safe and accessible can help prevent accidents and promote independence [ 12 ].

These challenges are therefore unique, as they do not arise in long-term care settings because there are staff and other people around all the time, unlike with home care [ 7 ].

To address these challenges, it is important to develop a comprehensive care plan to meet the unique needs of older people and family caregivers as well [ 13 ]. Overall, providing high-quality, person-centered care can help older people receiving long-term care at home maintain their independence and quality of life. High-quality care follows a holistic approach, ensuring the basic needs of the person, such as psychological and physical needs, dignity, and autonomy [ 13 ]. Patient-centered care emphasizes the involvement of the individual, both in terms of the information provided and in decision-making [ 14 ]. Ensuring that these concepts are incorporated in the care will help to preserve a person’s autonomypermit them to be involved in their care and make choices, which engenders an improved quality of life.

At the beginning of 2020 there were 556,000 (19.9%) older people aged 65 years and over in Lithuania. According to the average growth forecast by the Statistical Office of the European Union, the proportion of older people in Lithuania is expected to rise to 672,000 by 2050, an increase of more than 17%. Demographic changes are closely linked to the increase in healthcare and long-term care services [ 15 , 16 ]. In Lithuania, the long-term care network is underdeveloped, mainly based on institutional care and informal care, with fragmented home-based services in the social and health sectors that are inaccessible to a large portion of the population. In 2014, 47% of older people in need of long-term care had not received services [ 17 ]. Although the implementation of outpatient home nursing services in Lithuania started as early as 2008 on the basis of an order issued by the Minister of Health of the Republic of Lithuania, home care services have been actively implemented only since 2021. According to the 2021 Nursing and Social Services for the Older People Assessment Report, outpatient home care services were 10 times less resource-intensive than inpatient nursing services in Lithuania [ 18 ]. Although the tendency for home care services to be provided by informal caregivers still exists, current directions have been moving more towards services being provided by the healthcare professional team. However, assessment of the attitudes of not only service providers but also the attitudes of people towards these services is important.

For several reasons, it is important to assess and monitor home care services from the perspectives of both providers and recipients. Firstly, the services are new, having been launched in Lithuania in 2021, and are still evolving in terms of content and organization. Secondly, it is crucial to understand and ensure that the needs of the people receiving the services are identified and met so that services can be adapted accordingly. Thirdly, providers themselves need to contribute to the transformation of the national healthcare system.

The aim of this study was to investigate the older people’s experience and related factors while receiving home-based long-term care services.

To achieve this goal, the following research questions were posed:

What is the experience of receiving home-based long-term care as an older people?

What factors contribute to the acceptability and high quality of these services?

Study design

Our research team aims to comprehensively identify the experiences and personal insights of the health-care- and social-care-related needs of Lithuania based older adults who receiving home care services. Furthermore, we also seek to identify means of optimizing the use of available home health care resources in a manner that improves such persons’ wellbeing.

The scope of the present paper concerns comprehensive in-depth research into the personal experiences of older people who are receiving home care service, as well as the impact these new services on certain aspects of their own lives.

Our team of researchers chose a qualitative research approach in which older people‘s experiences were investigated as a phenomenon through face-to-face individual interviews to obtain a more in-depth understanding of the experiences and personal insights of the participants. Individual interviews are commonly used in healthcare research as a suitable way to elicit rich data about a participant’s experience. Individual interviews also provide an opportunity to obtain evidence that healthcare professionals can employ to develop improved healthcare practices. The study was performed in the second-largest city Kaunas in Lithuania; Kaunas is located in the center of the country and has socioeconomic indicators that are similar to the national averages.

The recommendations for qualitative research [ 19 ] and the COREQ checklist in the results reporting [ 20 ].

Participants

The study invited older individuals receiving long-term care at home to participate. To recruit these participants, we focused on a large family medicine clinic in Kaunas City, which serves approximately two-thirds of the city’s population. We identified suitable people from these clinics who met the inclusion criteria. Inclusion criteria were:

• A person must receive long-term care services at home.
• A person has a low, medium, or high nursing need according to the Nursing Needs Assessment Questionnaire [ 21 ]. The procedure for identifying the need for outpatient home care services was determined on a scale: up to 15 points – no need for outpatient home care services; 15 to 29 points – low need for outpatient home care services; 30 to 44 points – medium need for outpatient home care services; 45 points or more – high need for outpatient home care services. The maximum possible score was 93 points.
• A person must be in the older age group (65 years and over).
• Exclusion criteria were people undergoing active medical treatment, such as chemotherapy, surgical interventions, or other; people at an institutional caring home; and people receiving palliative care.

As the first step, we contacted community nurses and nurse practitioners to inform them about our study. We then asked them to identify eligible people with low to medium nursing care needs.

Seventeen individuals with low to medium nursing care needs participated in the study. It was noted that individuals with high nursing care needs were unable to participate.

Data collection

The primary researcher conducted the interviews. Based on the analysis of the limited research available in the field of home care and long-term care at home—since many countries are still in the process of implementing these services—the research questions were formulated [ 22 – 24 ].

Individual interviews require careful consideration of the interview environment. The interviewer created a non-threatening atmosphere by emphasizing that all ideas were valued and respected while maintaining privacy, and thus, the interviews were carried out in the participants’ own homes. Interviews were conducted using a semi-structured interview guide with the following questions:

• What are older people’s experience of receiving nursing care at home?
• What challenges do older people face in accessing nursing care services at home?
• What emotions do older people experience while receiving nursing care at home?

The interviews took place between June and August 2022. Interviews were digitally recorded and transcribed verbatim by a professional transcription service. The interviewer also recorded field notes during the participant interviews to document nonverbal behaviors and notable aspects of the home environment.

Data analysis

After the individual interview had been completed the audio recordings were transcribed verbatim. Two independent researchers systematically reviewed the entire dataset and coded the data by selecting the closest coding terms for the words used by the participants.

Later, each researcher’s coded transcripts were compared with the others, and this showed that the majority of the codes were similar. Any coding differences that were found were resolved through securing common consent among the researchers.

Meaningful words and key phrases were independently assigned codes by two members of the research team and then compared for agreement. Codes were then sorted and organized into themes. Atlas.ti version 9 was employed to store and facilitate data organization, coding, and retrieval [ 25 ].

The data analysis was based on the inductive approach and the thematic analysis strategy with the aim of effectively identifying and summarizing the problems experienced by the participants [ 26 ].

Braun and Clarke’s thematic analysis method is an iterative process consisting of six steps: (1) becoming familiar with the data, (2) generating codes, (3) generating themes, (4) reviewing themes, (5) defining and naming themes, and (6) locating exemplars [ 26 , 27 ].

Research ethics

Participants were informed of the purpose and the course of the study, risks and benefits, as well as their rights to terminate their participation at any time without denial of customary services. Participants then signed an informed consent. Ethical permission was granted by the Bioethics Centre of Lithuanian University of Health Sciences (authorization number BEC-ISP(M)-104).

There were 17 participants in the study. The majority were female ( n  = 14). The youngest person was 65 years old and the oldest was 97 years old. The distribution of people by age, gender, need for nursing care, length of time receiving home care services, and cohabitation is shown in Table  1 .

People’s sociodemographic characteristics

Within this study three main themes with associated subthemes emerged: 1 ) Challenges faced by older people receiving long-term care at home; (2) The impact of home care services on people’s social well-being , and (3) Older people’s contradictory emotions regarding care delivery (Table  2 ).

Themes and subthemes

Theme: challenges faced by older people receiving long-term care at home

The first theme that emerged from the data pertains to participants’ perspectives on the challenges faced while receiving long-term care at home. Three interrelated themes emerged from the data, illustrating that nursing care at home is a multi-dimensional, challenging, and holistic process that must address the physical (state of health), social (social support network), and psychological (emotional support) needs of the older people.

Chronic health conditions require ongoing management, which can be a complex and time-consuming process that requires coordination between the individual, family caregivers, and healthcare providers.

All people in the study faced a major challenge when it came to their health – physical disability, which was usually accompanied by pain:

“The biggest challenge for me is the back pain. Morally , it also has an impact , because lying down for so long is no joke. It’s been a year since I’ve been bedridden.” P10 .

Participants were most affected by the idea that they could not walk at all, and they were always at home. For some, this caused anger, and a feeling of inferiority; and for others, they saw themselves as a lying vegetable:

“For me , the thing that makes life most difficult is the difficulty of moving around. It’s hard for me that I can’t go anywhere anymore , that I must sit on the sofa at home all the time.” P14 .

In addition to the physical suffering, many people felt guilty that their relatives had to take care of them; that they were a burden:

“I’m getting used to it , but it’s hard that I have to be a burden to others.” P6 .

Respondents also emphasized feelings of loneliness and the weakening or complete loss of social ties:

“Lonely like a wolf , from window to window and that’s it. This loneliness is worse than illness…” P17 .

Theme: the impact of home care services on people’s social well-being

The second theme related to contextual factors associated with people’s social well-being. Within this theme there were four subthemes identified: Religiosity/Spirituality, Autonomy, Communication, and New technologies.

In Lithuania, the number of religious believers is over 80%, with the majority being Catholics. Therefore, participants were asked if religiosity was a significant factor for people receiving home care and how they expressed it. The participants reported an increased need for religiosity and a search for strength in faith as a positive result to home care services:

“I am a very religious person; I am protected by God. I used to go to the church all the time , but now I only pray at home. There are a lot of things you can’t solve by yourself. And when you ask for it , it seems to suddenly happen , it all works out.” P8 .

They were also pleased that home care allowed them to remain independent and stay in their own homes for as long as possible, rather than having to go to the hospital:

“Just stay at home , my opinion of hospices is very bad. I don’t want to; I really don’t want to go anywhere.” P2 .

Nursing care at home provided people with increased social support, as nurses were able to develop close relationships with people and their families. This led to feelings of connection and belonging. Social well-being refers to the extent to which a person feels connected to others, has a sense of belonging and feels supported by their community [ 25 ].

The application of new technologies (home video cameras, panic buttons, global positioning system (GPS) devices) in home care had both positive and negative impacts on the social well-being of the people.

On the positive side, participants said that the technology helped them call for help more quickly in the event of an emergency:

“It’s obviously a good thing. Because what am I afraid of , if I ever get sick , my husband wouldn’t even be able to call an ambulance.” P13 .

However, people also identified certain inconveniences caused by these technologies:

“If I had to , I wouldn’t really want to , because I have a toilet seat right next to my bed. It would make me uncomfortable with the cameras , maybe I don’t need them.” P4 .

Theme: older people’s contradictory emotions regarding home care delivery

The third theme related to people’s contradictory emotions regarding receiving long-term care at home. Within this theme four subthemes were identified: changes in their own lives, expectations of service providers, empowerment to make their own decisions, and involvement of others in home care.

The appearance of home care services made a significant difference to people’s lives and quality of life. All participants shared positive experiences. They were happy that various manipulations and tests could be carried out at home and that they no longer needed to go to the clinic:

“… I am happy , I just didn’t expect such a thing , I didn’t even know it was possible.” P2 .

Participants had even higher expectations of home care services, such as more visits, specific care, mobility equipment, and transportation services:

“And if there was a service to take you to doctors’ appointments when you need it , that would be great.” P5 .

In order to have an equal relationship between a person and health professional, it was important to treat people as autonomous and to build a reciprocal relationship and empower them to make their own health decisions. Participants felt they had a voice in their care and were able to make decisions:

“I feel very free about this , I have no problem with it , I always discuss the condition with the doctors and nurses together.” P2 .

When looking into the experiences of older people in home care, the role taken by relatives, professionals, or neighbors was important. Participants identified that it was teamwork and that each person was responsible for different areas:

“My family helps me because they make me meals , provide me with medicines and take care of all kinds of ailments. But I really appreciate your service , I don’t know what it would be like without physiotherapy and when you come to take tests. I think it’s like a teamwork here.” P6 .

The present study examining older people who received long-term care in the home revealed a variety of experiences and challenges, differing attitudes attitudes of the impact of home care on social well-being, and contradicting emotions. Nursing care for older people in their homes is an important aspect of health car, as it helps maintain their autonomy/independence, dignity, and quality of life [ 26 ]. Research has shown that people want to stay at home to recover after various injuries or other serious illnesses [ 27 , 28 ]. Therefore, home health care can be beneficial because it keeps people exactly where they want to be – at home and with their families. A study by researchers in the United States found that people who received care at home were less likely to be hospitalized or taken to the emergency room [ 29 ]. The research findings from a scientist in Iran indicated that the quality of life for older individuals receiving long-term care at home and living with their families was significantly higher than that of residents in nursing homes [ 30 ].

Challenges receiving home care

Findings from this study indicate that older people receiving nursing care in their homes faced challenges, especially in daily living assistance. When they experienced a reduced quality of life because they needed help in activities of daily living such as bathing, dressing, grooming, and toileting; their situation made them feel uncomfortable and more aware of their decreasing autonomy. The challenges that emerged most prominently were physical, social, and psychological factors. This was also relevant in studies conducted by other authors. People experienced anxiety due to physical challenges when they were unable to perform tasks that were once routine and easy [ 31 , 32 ].

Social wellbeing of the older people receiving home care

As many older people become frail and in need of care, it is likely that health professionals will become increasingly important to them at times when existential problems arise [ 33 – 35 ]. However, research showed that healthcare professionals struggled to meet people’s existential needs [ 35 , 36 ]. Caregiving could have significant implications on the social well-being of individuals. In this study, end-of-life issues, fear of suffering and death, and the need for religiosity were dominant in terms of people’s existential needs.

Social well-being is also directly linked to loneliness. A quantitative study by Norwegian researchers found that loneliness was more common among those in poorer physical health, those who felt helpless, those who needed help with daily activities, and those who were dissatisfied with life. Women and people who had no relatives were also more likely to feel lonely [ 36 ]. Our study showed that the strength of social ties and the loneliness of people depended strongly on their marital status, favorite activities, and their own attitudes. For the social well-being of the individual, it was important that the person’s existential needs were met; care was provided while preserving the person’s dignity and autonomy [ 37 ], no matter where a person received services, in the hospital or in their home. Home nursing services were not only about nursing procedure but also about social interaction, which was very important for people, especially those who were lonely. People who participated in the interview said they appreciated the opportunity to call for visiting nurses and talk, complain, and discuss different issues. People felt safer and more comfortable when they were able to complain to someone directly.

The quality of life for people can also be improved by incorporating new technologies into the home care process. Virtual tools like remote personal monitoring devices and telehealth, which are being used to supplement the in-home visits people receive from home health staff, yielded a positive experience for older people [ 38 ]. Although participants in our study had some misgivings about the use of new technologies in care, they agreed that it would help them to deal with unplanned situations such as calling the ambulance in case of an emergency case or just calling the nurse. Religion and spirituality were important aspects for older adults when it came to psychological and social well-being. It is believed in god that a higher level of religiosity might be associated with lower instances of depression and greater life satisfaction [ 39 ].

Older people’s participation in the process

People’s expectations of health care continue to rise, which needs to be properly managed to improve outcomes and reduce liability. Understanding people’s expectations may increase their level of satisfaction with care and it makes it easier for health professionals to provide person-centered care [ 40 ]. Receiving medical care at home eliminated many of the transportation barriers associated with healthcare access. And while most people appreciated convenient care access, it was particularly beneficial for sick or injured people who needed care. People who used apps that enabled them to access health care and rehabilitation found that the technology was very convenient because they did not have to go to a medical institution [ 41 , 42 ]. Participants in this study were very positive about nursing and other medical services they received at home. People mentioned that home care service was excellent; the staff came and drew blood as needed and performed other required procedures. Therefore, findings revealed that providing services at home was convenient and saved time for family members.

The goal of home health care is to help people improve, regain their independence, and become as self-sufficient as possible. To best serve and support people, home health clinicians are advised to see a person as a partner in care with great influence on how and when the care is delivered. Home care services should be tailored according to patient-centered factors such as basic needs, values, and beliefs [ 14 , 43 ]. Patient-centered care allows health care proffesionals to treat each individual as unique, establishing warm relationships, which enables the provision of high-quality services [ 36 ].

Strengths and limitations

In Lithuania, the home-based long-term care system is divided between health and social services, each with its own eligibility conditions, needs assessment criteria, and procedures. This division leads to unmet needs for some individuals and a duplication of services for others. To better address the needs of older people, it is essential to investigate them needs, expectations and obstacles for receiving service.

The main strength of this study was its ability to capture data on the implementation of new home-based long-term care services in Lithuania and help identify relevant issues. However, the study also has several limitations. Firstly, since home-based long-term care services in Lithuania are new, there were no established benchmarks to compare aspects such as service content, participant engagement, and needs. Secondly, participants were unfamiliar with assessing and articulating their needs within this context, potentially resulting in less accurate responses. Lastly, there may have been some influence from the researchers during the interviews.

Our research provides key insights into the demand, challenges, and desires of older people for home-based long-term care in Lithuania. Firstly, it highlights that older individuals receiving such care often face challenges like deteriorating health conditions and loss of independence, alongside weakening or lack of social relationships. As a result, they need emotional support, which can be difficult to provide due to social isolation.

The study also explores the impact of home care services on individuals’ social well-being, noting how these services can support older adults through religiosity/spirituality, autonomy, communication, and new technologies. Additionally, it addresses the conflicting emotions older people may have about the delivery of care.

The findings from this study provide a foundation for developing evidence-based guidelines for home-based long-term care.

Acknowledgements

We extend our gratitude to all patients who generously participated in the study and shared their valuable insights, thereby contributing to the enhancement of services.

Abbreviations

Author contributions

AN and AB made the design of the work, created methodology. AN carried out data collection, analysis and interpretation, prepared original draft. AB reviewed and edited the first draft. JN substantively revised and edited the work. All authors have made substantial contributions to the conception of the work and approved the final manuscript.

The authors declare there was no funding associated with the work featured in this article.

Data availability

Declarations.

Participants were informed of the purpose and the course of the study, risks and benefits, as well as their rights to terminate their participation at any time without denial of customary services. Participants then signed an informed consent. Ethical permission was granted by the Bioethics Centre of Lithuanian University of Health Sciences (authorization number ( BEC-ISP(M)-104).

Not applicable.

The author AB declares that has competing interests – is the Editorial Team Member. Other authors declare that they have no competing interests.

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