Effective approaches to public involvement in care home research: a systematic review and narrative synthesis
Research Involvement and Engagement volume 9, Article number: 38 (2023)
Public involvement (often referred to as patient and public involvement or PPI) integrates the voices of the public in health and care research. However, groups such as care home residents are often excluded from involvement opportunities due to the complexities of involving people with additional care and communication needs. Despite a range of approaches being used, there is little understanding about how best to incorporate their experiences, and those of other care home stakeholders, into the design and conduct of research.
A systematic review was conducted to identify PPI methods that better meet the specific needs of care home stakeholders. This was undertaken by (1) outlining effective PPI approaches used in care home research and the key stakeholders involved; (2) describing the role of PPI in different care home contexts and (3) identifying stakeholders’ experiences and attitudes towards PPI in care homes.
Databases CINAHL, Embase, MEDLINE, PsycINFO and Scopus were searched for English language papers from inception to November 2021. A narrative synthesis approach was utilised to organise the extracted data into five themes.
The search initially yielded 2314 articles (following de-duplication), with 27 meeting the inclusion criteria. Articles reported a range of input from stakeholders (including residents, staff, relatives and community stakeholders), with the impact of PPI varying according to the type of care establishment and research context. The experiences and reflections of stakeholders’ about their involvement in care home research varied, with some studies offering first-hand accounts compared with summaries from researchers. Some articles explicitly evaluated the effectiveness of the PPI approach using specific outcome measures whilst others indirectly described the impact of their approach. Five themes were identified as characterising an effective PPI approach: (1) valuing stakeholders’ perspectives, (2) awareness of the multi-faceted research context, (3) ensuring inclusivity and transparency, (4) maintaining flexibility and adaptability and (5) utilising resources and wider support.
Effective PPI in care home research requires researchers to create person-centred opportunities to adequately involve groups with physical and cognitive impairments. The findings led to the creation of evidence-based practical recommendations to support future involvement opportunities and help researchers develop strategies for inclusive opportunities for involvement.
Systematic Review Registration: The review was prospectively registered on PROPSERO (CRD42021293353).
Plain English summary
Public involvement actively incorporates the views and lived experiences of those affected by research and is essential to ensure that research is meaningful. However, involving some under-served groups, such as people living in care homes, can be complicated due to their additional care and communication needs. The best way to involve care home residents, families and staff in research is unclear. In this systematic review we looked at studies using different approaches to public involvement in care home research. We found that studies involved different combinations of residents, families, and staff depending on the type of study and what was involved. Some articles described what methods of public involvement had taken place, whilst others explained how effective their approach to involvement had been and why. For involvement to be effective, it was important that researchers valued differing perspectives by providing a safe forum for stakeholders to share their opinions. Researchers should also understand that successful involvement requires flexibility and adaptability to accommodate the varied needs of individuals such as time commitments and simplifying the complexities of the research terminology. Additionally, researchers should utilise the wide range of available resources and support to ensure under-served groups are appropriately included within the research team. We concluded that public involvement in care home research needs to focus on the needs of the individuals to ensure that people with physical and cognitive impairments can be involved. The findings can help care home researchers to create equal opportunities for all to be involved.
Public involvement (often referred to as patient and public involvement or PPI) has evolved into an essential aspect of research practice, which endeavours to integrate the voices of the public into the research process [1,2,3]. The National Institute for Health Research (NIHR) defines PPI in research as, “research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ ‘them” . The public are ‘experts by experience’, with vast experiential knowledge that offers a specific perspective to research [1, 4]. The NIHR is the largest funder of health and care research in the UK; specifically advocating for PPI in research with particular interest in the involvement of marginalised groups .
Despite this, care home residents continue to be under-represented, with minimal understanding of the benefits of utilising their first-hand experiences in research [2, 3]. Older adults account for the largest growing segment of the population, of which approximately half a million live in 19,000 care homes in the UK [1, 5]. Younger adults aged 18–64 who have learning disabilities, mental health problems and other social needs may also live in residential care. Younger adults represent one-third of care users in the UK which accounts for over half of local authority spending . However, historically there has been much less research conducted within these communities compared to individuals within hospital settings; with further disparities between the care received from older people in social care compared to younger adults [1, 6, 7]. ‘Care home’ is commonly used as a catch-all term which incorporates nursing and residential homes and is defined by Luff et al.  as “all residential long-term care settings which provide group living and personal and/or nursing care for older people and other adults”.
Adults dependent on social care are the greatest recipients of healthcare services, with many experiencing complex multimorbidity, increasing frailty and dependency on nursing staff [5, 9]. Care home residents are an under-served group in research partly due to communication challenges with hearing, visual and cognitive impairments which presents methodological challenges including difficulty obtaining informed consent, the additional time needed to support participation, challenges in securing funding, and lack of expertise in research involving these groups [4, 10]. The absence of representative and inclusive research in this population group can result in findings that are biased and mismatched to the needs of care home residents; thus, precipitating ineffective treatments, divergent agendas and misrepresentation .
When designing and conducting research, it is important embed public involvement throughout which incorporates the lived experience of care home residents and caregivers [4, 12] alongside the scientific knowledge of academic researchers. This involvement can be viewed as a continuum ranging from individuals being consulted about their views and opinions through to being co-researchers, co-producers, or as project leaders of the research [13, 14]. They can become active partners within the research design, delivery, data analysis and dissemination [1, 13, 14]. Whilst there is there is a growing recognition of the value of PPI in care home research, at present, there is insufficient knowledge about effective strategies to involve vulnerable adults as research partners with meaningful impact , particularly in care home settings. Previous reviews have focused solely on the involvement of care home residents , however care homes can be viewed as ‘communities of care’ and so the perspectives of other stakeholders are often involved. An understanding of how best to involve multiple stakeholders, who will have a range of roles and needs, and in different types of research and care home contexts has yet to be explored.
To address this gap, we aimed to systematically identify and synthesise published studies to identify effective PPI approaches used in care home research. The objectives were to: (1) outline what approaches were used in PPI in care home research and the key stakeholders involved; (2) describe the role of PPI in different care home contexts and (3) identify stakeholders’ experiences and attitudes towards PPI in care home research. In this review, ‘public’ refers to residents (older people and adults with disabilities dependent on social care), relatives, caregivers and representative organisations. These groups can be considered key stakeholders in care home research. Approaches were considered ‘effective’ where the researchers who reported the study had viewed their experience of PPI activity as positive or having been successful in achieving its aims.
The findings from this systematic review can be used to improve the standard of PPI in care home research by identifying the best approaches to create inclusive opportunities for care home stakeholders . Better understanding about how to involve key stakeholders in care home research will enhance the quality of studies being conducted, ensure that health and care research is meaningful and leads to improvement in the care that these groups receive, and help to address the challenges of social exclusion, injustice, and marginalisation that members of these groups can experience [4, 5].
This systematic review is reported in accordance with the 2020 Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines . The protocol was prospectively registered in the PROSPERO 2021 database (CRD42021293353). A narrative synthesis was adopted as it was likely there would be wide heterogeneity between the studies. This approach uses data to ‘tell a story’ and was guided by the Cochrane Collaboration and Economics and Social Research Council [18, 19].
This review was limited to English language studies without date limits on the publication year. Studies were included if they reported PPI research in care homes, residential homes, or nursing homes regardless of the care home population (older people or younger adults with disabilities), research topic or study methodology. Studies were excluded if they did not report PPI in care home research, key stakeholders were not included, or the study was conducted in other social care settings. The SPIDER framework (Setting, Phenomenon of interest, Design, Evaluation, Research design)  was utilised to develop the eligibility criteria (Table 1). This approach is best suited for qualitative research and enables the exploration of behaviours and individual experiences.
Systematic search strategy
A search of five electronic databases (CINAHL, Embase, MEDLINE, PsycINFO and Scopus) was conducted in November 2021. The search strategy was developed with guidance from a subject librarian (Appendix 1) to capture the three key concepts of the research question comprising (1) PPI in research, (2) care homes and (3) attitudes and approaches. The search strings were adapted from NIHR recommendations on search terms for ‘public involvement’ , and two systematic reviews exploring end-of-life care in care homes  and attitudes and approaches to PPI in research . Boolean search terms ‘OR’ and ‘AND’ were used to translate the research question into research string that captured the relevant articles from bibliographic databases.
A supplementary lateral search of additional literature resources was conducted by searching reference lists of studies and applying comprehensive pearl-growing techniques to broaden the search through forward citation of included studies (completed February 2022). Additional studies were retrieved from web searching and searching a topic-specific journal (Research Involvement and Engagement) by adapting the search concepts used in the electronic databases to create specific search strategies for additional literature resources.
De-duplicated studies were exported into EndNote 20.2. Study selection comprised of three stages: firstly, the titles and abstracts from the initial literature search were screened by the first author. Of these studies, 10% were then double screened by another researcher to ensure consistency. Secondly, the full text of included articles (n = 94) were independently reviewed by two co-authors for eligibility, the reasons for exclusion were recorded in accordance with the PRISMA guidance . Records where the full text was not retrievable were considered ineligible. Thirdly, disagreements over study eligibility of those classified as ‘maybe’ (n = 28) and ‘conflict’ (n = 15) were resolved by reviewing the full text of the disputed articles and comparing the decision-making of included articles with the disputed articles through transparent discussion. A third researcher was consulted where necessary to reach a consensus and develop a clearer criterion to reduce uncertainty going forward.
In accordance with the published protocol, quality assessment of included studies was attempted using the Mixed Methods Appraisal Tool (MMAT) 2018 version which enables appraisal of different study designs . However, during the critical appraisal process, the MMAT was found to be inappropriate due to the lack of consistency of PPI reporting and absence of established methodological rigour. A review of other appraisal tools failed to identify an alternative appropriate tool for assessing the reporting of PPI. Hence, studies were not excluded based on methodological quality but the issues that arose with the reporting of PPI in research were explored in the data synthesis stage as recommended in the narrative synthesis guidance.
A data extraction tool was developed for this review with guidance from Backhouse et al. . Extracted data included study details, research methodology, recruitment, the barriers and elements enhancing PPI in research (Appendix 2). All data extraction was conducted by the first author, with double data extraction of 10% of studies performed by the other two authors. Due to the variability and heterogeneity of the PPI reporting within the included articles, the regular discussions with the research team during the study selection led to a robust framework when standardising subjective assessment. The data extraction forms of the included articles were imported into NVivo 12 software to aid thematic code generation.
Codes were created to capture the meaning of key underlying and recurring concepts and were organised into themes which were iteratively developed using headings from the data extraction tool. Definitions for each generated theme were developed and refined through regular discussions amongst the research team.
Database searches yielded 3671 papers with an additional 15 papers identified from other sources. Following de-duplication this resulted in a total of 2314 records, of which 94 studies were retrieved for full-text assessment following identification of studies via databases (n = 79) and other methods (n = 15) (Fig. 1, PRISMA Diagram). Using the inclusion criteria, 27 studies were subsequently included in the analysis.
The characteristics of the studies are reported in Table 2. Most studies referred to older people but varied in study topic and degree of stakeholder involvement. Only one study  focused on younger adults with disabilities living in care homes. Study locations included the UK (n = 13), Europe (n = 5), Canada (n = 5), USA (n = 3) and South America (n = 1).
Synthesis of findings
An effective approach to PPI was defined by reviewing stakeholders’ experiences and attitudes to PPI in care home research as having been positive or achieving its aims. Effective approaches to PPI in care home research were grouped into five themes: valuing stakeholders’ perspectives; ensuring inclusivity and transparency; awareness of the multi-faceted research context; maintaining flexibility and adaptability and utilising resources and wider support. Table 3 illustrates the overarching themes with associated definitions and examples from the included studies.
Each of the five overarching themes have associated subthemes which is illustrated in the conceptual diagram shown in Fig. 2.
Valuing stakeholders’ perspectives
Experts by experience
For PPI in care home research to be effective, stakeholders should be valued as experts due to their authentic experiential knowledge. Most studies formulated inclusion criteria that encapsulated the first-hand experiences of stakeholders however physical impairments such as reduced sight, hearing and mobility challenged the involvement of residents [36, 38]. Despite this, one study defined residents as ‘visionaries’ and included residents regardless of physical or memory difficulties; empowering their role as active research partners . Directly involving PPI stakeholders in the data analysis unsettled some researchers as they were reluctant to view PPI stakeholders as ‘experts by experience’ [36, 40, 50].
Achieving meaningful impact
The insights shared by PPI stakeholders should guide the research for meaningful impact . Three studies centralised PPI stakeholders within the study design which strengthened the quality and relevance of the research methodology [25, 32, 34]. Another study utilised PPI stakeholders’ recommendations to involve care home managers in recruitment which ultimately led to a 3% increase in participant recruitment per home . Despite this, the overall benefits of PPI approaches within research appeared to be superficial and ineffective in other studies [41, 44]. However, acknowledging the distinctive and valuable contribution of PPI stakeholders was regarded an effective PPI approach [32, 40, 49].
Extending the influence of PPI stakeholders beyond the research design to dissemination promotes the resonance and impact of the research findings [45, 46]. As co-authors, PPI stakeholders provided a reflective perspective that was tailored to their specific needs by promoting conversations, facilitating group discussions and interviews, pilot testing of interventions with subsequent findings relayed to the academic team [37, 38, 50]. A user-centred approach empowers PPI stakeholders and offers quality assurance throughout the study, as the involvement is tailored to the specific needs and strengths of the PPI stakeholders. Furthermore, dissemination at national conferences offered an added sense of authenticity and credibility [27, 30, 37]. This amplified PPI stakeholder input improves pathways for future quality improvement projects by increasing the applicability of the research findings [35, 43].
Inclusivity and transparency
Spectrum of involvement
PPI stakeholders had a variety of roles in studies. The continuum of involvement was vast including PPI stakeholder contribution at iterative stages of the research design [28, 32, 49] during intervention development [37, 47, 48], the production of study materials [25, 46], data analysis [29, 39, 43] and facilitating discussions [32, 50] which has been shown to enhance research outcomes. An effective PPI approach extends the role of PPI stakeholders throughout all aspects of research from encouraging attendance in face-to-face research meetings, asking for feedback on projects via preferred communication methods to contribution in NIHR-funded reviews . This comprehensive involvement of PPI stakeholders enables distinct and often unheard perspectives to permeate research.
Safe communicative space
Inclusive and transparent communication between PPI stakeholders and researchers provided a safe space to share opinions and lived experiences . This was achieved by hosting separate meetings for PPI stakeholders , eliminating academic jargon  to building a rapport and fostering professional relationships [33, 40] resulting in sustained willingness to participate [34, 35]. A safe communicative space enables PPI stakeholders to interact with academics with authenticity and ‘change the dynamic in a positive way’, nurturing enjoyable collaborations that extend beyond professional settings to informal social events .
Multi-faceted research context
Balancing power dynamics
The hierarchical positioning between PPI stakeholders and researchers and between care home administration and residents was influential to PPI in care home research [26, 36]. Creating a power balance between researchers and PPI stakeholders enabled polyvocal perspectives, trust and openness [27, 28, 30, 43]. An imbalance was potentiated through language and discourse  and where the role of PPI stakeholders within decision-making was undefined [34, 41] or where tension was created between PPI stakeholders and researchers due to differing expectations about, and understanding of, research timescales [45, 48]. As a result, the views and inputs of residents were often overwhelmed and overpowered by multiple perspectives from clinical researchers, staff and even relatives. This highlights existing power dynamics and the complexities of addressing research translation and implementing research roles with PPI stakeholders . An effective PPI approach addressed the inherent power relationships within research to encourage maximal involvement.
Navigating the research topic
Many studies noted that the greater the complexity and difficulty of the research concepts, the more disengaged and overwhelmed PPI stakeholders become. The vast amount of complex information led to projects sometimes being ‘out-of-scope’ for some stakeholders [28, 50] which was exacerbated through academic jargon and the pace of discussions [26, 48]. This cognitive burden was sometimes coupled with the physical demand of the research schedule [30, 36, 38] and emotional responses provoked by the research topic . Effective PPI used lay summaries and language which connected with the initial knowledge of PPI stakeholders to create a comfortable research environment [40, 41].
Appropriate recruitment process
Utilising a variety of strategies to recruit PPI stakeholders and care organisations increased the generalisability of the findings [39, 42]. Advertisements, posters and flyers were distributed to PPI stakeholders via local publicity; using attractive taglines to engage specific stakeholder groups [32, 46, 51]. Existing recruitment structures were also exploited via volunteer forums, pre-established PPI groups and attendance to local stakeholder conferences [26, 40, 48]. Some studies adopted a top-down recruitment approach where PPI stakeholders were nominated and purposively selected [29, 38, 51]. Thus, appropriate consideration of recruitment methods increased the representativeness of PPI stakeholder input.
Flexibility and adaptability
Many studies reported the attrition of PPI stakeholders, particularly care home staff due to their demanding work schedules, sickness and differing priorities [49,50,51]. This high staff turnover resulted in irregularity in their involvement [30, 35, 44]. To attain an effective PPI approach in care home research, adaptations to the research schedule were required to sufficiently incorporate care home staff within research [41, 45].
Tailoring communication methods
To sustain collective involvement of PPI stakeholders, strategic and flexible ways of communication need to be adopted. Intentional dialogue pathways such as email, telephone or letters were instrumental methods of interaction [26, 32, 48, 51]. Creative methods such as role play and parallel workshops were utilised [37, 42, 46] and virtual meetings once a rapport was established [25, 31]. This approach differs to conventional dialogue pathways as it provides a platform for PPI stakeholders to express their interpretations of research findings and contribute to the design process in an informal and relaxed setting; thus, promoting collaboration and a transparent passage of information with the research team. Some studies recognised the challenges of digital literacy in older adults and designated an ‘embedded researcher’ who had an ‘open-door’ policy to facilitate the concerns of the PPI stakeholders [26, 32, 40, 45].
Resources and wider support
A financial budget that incorporates the costly elements of PPI enhanced the effectiveness of PPI in one study . Some studies covered expenses for travel, printing, telephone use [34, 50] and the cost of time [32, 33, 49]. Other studies offered an honorarium payment for participation [38, 45] in one study, staff involvement was part of a secondment arrangement funded by government ; whilst other studies used national guidelines for user involvement to stipulate the value of travel expenses and honorariums that PPI stakeholders should receive . But not all PPI stakeholders were rewarded  and the payment amount was not usually divulged within the reports [43, 45].
Recognising training needs
An effective PPI approach considered the use of training programmes to help PPI stakeholders ‘find direction’ within the research . Most studies focused on practical research skills including, data collection, analysis and interviewing [39, 41] which varied in length from 1 day programmes to several weeks [32, 34] and was conducted by specialists in the field [25, 40]. Opposingly, one study preferred the pre-existing skills, expertise and perspectives of the PPI stakeholders rather than academic training .
The findings from this review support a growing a body of literature that highlights the value PPI brings to research, improving its relevance and applicability [53,54,55,56]. Care home residents and staff have unique insights as co-researchers, their experiential knowledge providing valuable learning opportunities for academic researchers . The authentic experiences of PPI stakeholders can encourage practice improvement and culture change within research where residents and staff become ‘professionalised users’ and ‘experts by experience’ within research [1, 2, 4, 14]. For this shift to occur with meaningful involvement between PPI stakeholders and academic staff, mutual partnerships and relationships need to be fostered which are flexible in power-sharing and decision-making . Previous studies have identified effective approaches to the inclusion of diverse groups  and people receiving palliative and end of life care . This review identified several factors specifically associated with effective PPI in care home research in addition to similar themes around gatekeeping, communication, and a lack of reporting of PPI activities.
Due to the lack of consistency of PPI reporting in included studies, and an absence of established methodological rigour, the role of PPI was variable according to the care establishment and research context. The transparency of the PPI process was variable particularly within nursing homes where PPI stakeholders were either selected according to a convenience sample and overall representation with limited explanation of the PPI recruitment process [29, 42, 47, 49]. This is juxtaposed to formal recruitment methods where stakeholders were encouraged to enrol via meetings, conferences and online platforms and were informed of the time commitments, duration of participation and their role in the project [30, 38, 48].
The degree of stakeholder collaboration varied significantly, often care home residents had limited involvement compared to other stakeholder groups. Key stakeholders referred to residents (older people and adults with disabilities), relatives, caregivers and representative organisations. However, due to power dynamics and polyvocal perspectives there were conflicts of interest resulting in the views of residents being overpowered by caregivers and representative organisations [27, 45]. Moreover, numerous studies have highlighted the challenges of ensuring broad representation of vulnerable adults in research due to physical and cognitive impairments which affect the level of participation [2, 4, 54]. These individual-led barriers to involvement are often reasons why care home residents are often excluded from studies  or only informally involved , whilst fitter and more independent residents tend to be more active PPI stakeholders .
The negative perceptions associated with care homes often limits residents’ engagement in research as sole participants; becoming the ‘researched’ as opposed to the ‘co-researchers’. This was highlighted in the study with younger adults  where despite being younger than 65 years old, their physical impairments of cerebral palsy, multiple sclerosis and muscular dystrophy limited the extent of their involvement in the research setup. Notably, only one study explored the role of PPI with younger adults in care homes which underscores the preconceived ideas of care home residents, their abilities and degree of involvement in research. Arguably, the disparities of PPI and research engagement within care homes extends beyond age but is instead bound by the societal perceptions of the catch-all term ‘care home’—of which more transparent research is needed to address.
The growing importance of equality, diversity and inclusivity in research offers a diverse perspective to recruitment strategies. Representation from those with varying educational attainment, gender, geography, and ethnicity provides a broader perspective on the issues affecting vulnerable adults [9, 10, 14]. Black et al.  had a diverse sample of PPI stakeholders with an equal split of male and females, three different ethnicity categories and a wide range of ages which created a welcoming research environment and improved research partnerships. Bindels et al.  noted gender and educational attainment influence the experience of ageing with differing health behaviours and outcomes. Consequently, an effective PPI approach will adopt appropriate recruitment processes to retrieve diverse personal perspectives. Additionally, conducting research in care homes with younger residents  may require alternative approaches to PPI as the challenges and approaches identified in this review may be specific to the physical and cognitive disabilities more often encountered by older people or may not be applicable to other care settings such as supported accommodation.
Care home residents can aid dissemination, research findings should be distributed to non-academic settings by PPI stakeholders who are sensitive to the tone of dissemination . For example, Gridley et al.  involved people with dementia to produce a short film and a plain English summary to disseminate the results. The PPI stakeholders included people with dementia, care staff and family caregivers. Similarly, Bethell et al.  purposefully engaged people with dementia in developing surveys, priority-setting and implementing recommendations. This continuum of involvement encourages democratisation of research that is inclusive and appropriately aligned to the needs of PPI stakeholders [2, 4].
The first-hand experiences and reflections of stakeholders’ regarding their role of PPI in care home research was not always explicitly stated. Some articles highlighted the perception of being ill-informed or unknowledgeable regarding the research concepts  whilst other articles evaluated the success of the PPI project through dialogue excerpts, detailing the dissemination attempts and outlining motivations for involvement [43, 44, 46, 48]. Whereas the perceived impact and the evaluation of PPI outcomes was implied for most articles [25, 36, 39, 41, 42, 45, 47]. Incorporating critical and collective reflections of PPI stakeholders and researchers within research projects will develop a transparent working environment that promotes collaboration between science and practice .
Strengths and limitations
This review was prospectively reported on PROSPERO. The inclusion criteria provided a platform for care home residents who are often underrepresented in research, whilst recognising that the perspectives and experiences of a wider range of stakeholders are often valuable to include. However, challenges were encountered during the screening process as PPI is not always being reported in the title, abstract or study aims which may have led to relevant studies not being included. Additionally, the lack of clear definitions around involvement, participation, engagement, and co-production made it difficult to differentiate between the role of PPI stakeholders within the research design. Consequently, more research is required to characterise key terminology along the PPI continuum and to develop tools to appraise the quality of articles reporting PPI activities or approaches. The variable quality of PPI reporting has been widely reported elsewhere and led to the development of reporting frameworks such as GRIPP2 .
Our findings are supported by a scoping review which was published following our review and which focused on mapping co-production approaches to care home research for older adults . As in our review which considered the wider spectrum of public involvement, the review of co-production approaches identified a broad range of stakeholder involvement and highlighted the importance of reciprocal relationships and ensuring inclusive opportunities .
Due to resource limitations public involvement was not included in the research design, analysis or authorship of this study which, if incorporated, would have enhanced the outcomes and conduct of the study and provide opportunities to apply the research findings into practice. We were similarly limited to English language studies which impacted the representativeness of the sample. Notably, most of the studies were conducted prior to the COVID-19 pandemic during which there were seismic shifts in the nature and mode of PPI activities. Other limitations included the risk of bias, with a single reviewer of full-text eligibility and data extraction and a sample independently reviewed by a second reviewer. This may have resulted in subjective assessment and key methodological concerns remaining unidentified.
These findings unify current understanding of incorporating care home residents as PPI members within research. Utilising evidence-based insights with appropriate adjustments to PPI methods (Fig. 2), care home residents and marginalised groups can engage within research, resulting in findings that are more relevant to the target population.
We have used the findings from this review to develop practical recommendations that will support more inclusive and effective PPI in care home research (Table 4).
We have used the evidence-based PPI guidelines to propose practical recommendations which can be applied in future care home research. Further exploration is needed to develop strategies for involving residents with greater support needs and time-pressured care home staff within research. Strategies are also needed which extend beyond the traditional methods of PPI to incorporate more innovative approaches within different study designs, whilst establishing appraisal tools to adequately measure and report the quality of PPI.
People living in care homes often require the highest and most complex level of care, whose needs are met by a large and diverse workforce. An effective PPI approach transforms the view of residents and staff as consumers with a passive voice to owners of research with active and valuable participation in the creation of knowledge. This is achieved by careful consideration of five person-centred factors: valuing stakeholders’ perspectives, ensuring inclusivity and transparency, taking account of the multi-faceted research context, maintaining flexibility and adaptability whilst utilising resources and wider support. It is hoped that the practical recommendations given can transform the research culture and create a research environment that is representative and accessible to this under-served group regardless of age, experience, or health status.
Availability of data and materials
Supplementary materials and data extracted can be obtained from the authors on reasonable request.
Care Home Interest Group
Lesbian, gay, bisexual, and transgender
Mixed methods appraisal tool
National Institute for Health Research
Public Involvement in Research Group
Partnerships for older people projects
Preferred reporting items for systematic reviews and meta-analyses
Seniors helping as research partners
Setting, phenomenon of interest, design, evaluation, research design
Voices of individuals, family and friend caregivers educating us
NIHR. Public involvement in care home research workshop report. Yorkshire: Research Design Service Yorkshire and the Humber; 2013.
Fereday S, Rezel K. Patient and public involvement in quality improvement. London: Healthcare Quality Improvement Partnership, Service User Network; 2017.
Backhouse T, Kenkmann A, Lane K, Penhale B, Poland F, Killett A. Older care-home residents as collaborators or advisors in research: a systematic review. Age Ageing. 2016;45(3):337–45.
Bindels J, Baur V, Cox K, Heijing S, Abma T. Older people as co-researchers: a collaborative journey. Ageing Soc. 2014;34(6):951–73.
McNeil H, Elliott J, Huson K, Ashbourne J, Heckman G, Walker J, et al. Engaging older adults in healthcare research and planning: a realist synthesis. Res Involv Engagem. 2016;2(1):10.
Idriss O, Allen L, Alderwick H. Social care for adults aged 18–64. London: The Health Foundation; 2020.
Shippee ND, Domecq Garces JP, Prutsky Lopez GJ, Wang Z, Elraiyah TA, Nabhan M, et al. Patient and service user engagement in research: a systematic review and synthesized framework. Health Expect. 2015;18(5):1151–66.
Luff R, Ferreira Z, Meyer J. Care homes: methods review 8. London: NIHR The School for Social Care Research; 2011.
McMurdo MET, Roberts H, Parker S, Wyatt N, May H, Goodman C, et al. Improving recruitment of older people to research through good practice. Age Ageing. 2011;40(6):659–65.
Habicht DW, Witham MD, McMurdo MET. The under-representation of older people in clinical trials: barriers and potential solutions. J Nutr Health Aging. 2008;12(3):194–6.
Collingridge Moore D, Payne S, Van den Block L, ten Koppel M, Szczerbińska K, Froggatt K, et al. Research, recruitment and observational data collection in care homes: lessons from the PACE study. BMC Res Notes. 2019;12(1):508.
Reed J, Stanley D, Clarke CL. Health, well-being and older people. Bristol: Policy Press; 2004.
Emiroglu C, Gorpelioglu S, Aypak C. The relationship between nutritional status, anemia and other vitamin deficiencies in the elderly receiving home care. J Nutr Health Aging. 2019;23(7):677–82.
Black A, Strain K, Wallsworth C, Charlton S-G, Chang W, McNamee K, et al. What constitutes meaningful engagement for patients and families as partners on research teams? J Health Serv Res Policy. 2018;23(3):158–67.
Phoenix M, Nguyen T, Gentles SJ, VanderKaay S, Cross A, Nguyen L. Using qualitative research perspectives to inform patient engagement in research. Res Involv Engagem. 2018;4(1):20.
Hallam-Bowles FV, Logan PA, Timmons S, Robinson KR. Approaches to co-production of research in care homes: a scoping review. Res Involv Engagem. 2022;8(1):74.
Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021;372:n71.
Henderson L, Craig J, Willis N, Tovey D, Webster A. How to write a cochrane systematic review. Nephrology. 2010;15(6):617–24.
Popay J, Roberts H, Sowden A, Petticrew M, Arai L, Rodgers M, et al. Guidance on the conduct of narrative synthesis in systematic reviews: a product from the ESRC methods programme. 2006.
Cooke A, Smith D, Booth A. Beyond PICO: the SPIDER tool for qualitative evidence synthesis. Qual Health Res. 2012;22(10):1435–43.
NIHR. Public involvement in social care research. London: National Institute for Health and Care Research; 2021.
Spacey A, Scammell J, Board M, Porter S. End-of-life care in UK care homes: a systematic review of the literature. J Res Nurs. 2018;23(2–3):180–200.
Biddle MSY, Gibson A, Evans D. Attitudes and approaches to patient and public involvement across Europe: a systematic review. Health Soc Care Community. 2021;29(1):18–27.
Hong QN, Pluye P, Fàbregues S, Bartlett G, Boardman F, Cargo M, et al. Mixed methods appraisal tool (MMAT) version 2018. Montréal: McGill University, Medicine DoF; 2018.
Aubrecht K, Barber B, Gaunt M, Larade J, Levack V, Earl M, et al. Empowering younger residents living in long-term care homes as co-researchers. Disabil Soc. 2021;36(10):1712–8.
Brown LJE, Dickinson T, Smith S, Brown Wilson C, Horne M, Torkington K, et al. Openness, inclusion and transparency in the practice of public involvement in research: a reflective exercise to develop best practice recommendations. Health Expect Int J Public Particip Health Care Health Policy. 2018;21(2):441–7.
Burns D, Hyde P, Killett A, Poland F, Gray R. Participatory organizational research: examining voice in the co-production of knowledge. Br J Manag. 2014;25(1):133–44.
Chamberlain SA, Estabrooks CA, Keefe JM, Hoben M, Berendonk C, Corbett K, et al. Citizen and stakeholder led priority setting for long-term care research: identifying research priorities within the translating research in elder care (TREC) program. Res Involv Engagem. 2020;6(1):24.
Charles C, Schalm C, Semradek J. Involving stakeholders in health services research: developing Alberta’s resident classification system for long-term care facilities. Int J Health Serv Plan Admin Eval. 1994;24(4):749–61.
Eisenstein AR, Milstein L, Johnson R, Berman R. The Bureau of Sages: incorporating older adult voice into meaningful research. Prog Community Health Partnersh Res Educ Action. 2020;14(3):359–70.
Elliott J, Whate A, McNeil H, Kernoghan A, Stolee P, Group S. A SHARP response: developing COVID-19 research aims in partnership with the seniors helping as research partners (SHARP) group. Can J Aging. 2021;40:1–8.
Evans S, Corley M, Corrie M, Costley K, Donald C. Evaluating services in partnership with older people: exploring the role of “community researchers.” Work Older People Community Care Policy Pract. 2011;15(1):26–33.
Froggatt K, Goodman C, Morbey H, Davies SL, Masey H, Dickinson A, et al. Public involvement in research within care homes: benefits and challenges in the APPROACH study. Health Expect Int J Public Particip Health Care Health Policy. 2016;19(6):1336–45.
Goodman C, Mathie E, Cowe M, Mendoza A, Westwood D, Munday D, et al. Talking about living and dying with the oldest old: public involvement in a study on end of life care in care homes. BMC Palliat Care. 2011;10:20.
Griffiths AW, Devi R, Cheetham B, Heaton L, Randle A, Ellwood A, et al. Maintaining and improving mouth care for care home residents: a participatory research project. Int J Older People Nurs. 2021;16(5):e12394.
Hewitt G, Draper AK, Ismail S. Using participatory approaches with older people in a residential home in Guyana: challenges and tensions. J Cross Cult Gerontol. 2013;28(1):1–25.
Hoffman AS, Hoffman DB, Peirce HA, Dreyer L, Tang C, Bateman DR, et al. Development and field testing of a long-term care decision aid website for older adults: engaging patients and caregivers in user-centered design. Gerontologist. 2020;60(5):935–46.
Johannessen T, Ree E, Stromme T, Aase I, Bal R, Wiig S. Designing and pilot testing of a leadership intervention to improve quality and safety in nursing homes and home care (the SAFE-LEAD intervention). BMJ Open. 2019;9(6):e027790.
Killett A, Hyde P, Burns D, Gray R, Poland F. How organizational factors interact to influence the quality of care of older people in the care home sector. J Health Serv Res Policy. 2013;18(1 Suppl):14–22.
Logan PA, Horne JC, Allen F, Armstrong SJ, Clark AB, Conroy S, et al. A multidomain decision support tool to prevent falls in older people: the FinCH cluster RCT. Health Technol Assess. 2022;26:9.
Mann J, Bishop R, Bond G, Forbes F, Kieloch B, Thelker C, et al. The voices of lived experience: reflections from citizen team members in a long-term care research program. Res Involv Engagem. 2021;7(1):69.
Oude Weernink CE, Sweegers L, Relou L, Van Der Zijpp TJ, Van Hoof J. Lost and misplaced items and assistive devices in nursing homes: Identifying problems and technological opportunities through participatory design research. Technol Disabil. 2017;29(3):129–40.
Scheffelaar A, Bos N, de Jong M, Triemstra M, van Dulmen S, Luijkx K. Lessons learned from participatory research to enhance client participation in long-term care research: a multiple case study. Res Involv Engagem. 2020;6(1):27.
Shura R, Siders RA, Dannefer D. Culture change in long-term care: Participatory action research and the role of the resident. Gerontologist. 2011;51(2):212–25.
Smith N, Towers A-M, Collins G, Palmer S, Allan S, Beecham J. Encouraging managers of care homes for older adults to participate in research. Qual Ageing Older Adults. 2019;20(3):120–9.
Stocker R, Brittain K, Spilsbury K, Hanratty B. Patient and public involvement in care home research: reflections on the how and why of involving patient and public involvement partners in qualitative data analysis and interpretation. Health Expect Int J Public Particip Health Care Health Policy. 2021;24(4):1349–56.
Stockigt B, Teut M, Suhr R, Sulmann D, Brinkhaus B. Intentional touch for elderly people with chronic pain-a qualitative study. BMC Complement Altern Med. 2017;17(Supplement 1):195–205.
Walsh KA, Byrne S, McSharry J, Browne J, Irving K, Hurley E, et al. Developing a complex intervention targeting antipsychotic prescribing to nursing home residents with dementia. HRB Open Res. 2021;4:23.
Walshe C, Kinley J, Patel S, Goodman C, Bunn F, Lynch J, et al. A four-stage process for intervention description and guide development of a practice-based intervention: refining the Namaste Care intervention implementation specification for people with advanced dementia prior to a feasibility cluster randomised trial. BMC Geriatr. 2019;19(1):275.
Willis P, Almack K, Hafford-Letchfield T, Simpson P, Billings B, Mall N. Turning the co-production corner: methodological reflections from an action research project to promote LGBT inclusion in care homes for older people. Int J Environ Res Public Health. 2018;15(4):695.
Woelders S, Abma T. Participatory action research to enhance the collective involvement of residents in elderly care: about power, dialogue and understanding. Action Res. 2019;17(4):528–48.
Arnstein SR. A ladder of citizen participation. J Am Inst Plan. 1969;35(4):216–24.
Bowen M, Pepe R, Hancock B, Shah R, Buchanan S, Edgar D, et al. Health services development research with people with dementia: Key features, factors, and learning from a multi-site, mixed methods study. Alzheimer’s Dement. 2015;11(7 SUPPL. 1):P891.
Cranley L, Sivakumaran G, Helfenbaum S, Galessiere D, Meyer R, Duggleby W, et al. Development of communication tool for resident- and family-led care discussions in long-term care through patient and family engagement. Int J Older People Nurs. 2021;17:e12429.
Trenaman S, Willison M, Robinson B, Andrew M. A collaborative intervention for deprescribing: the role of stakeholder and patient engagement. Res Soc Adm Pharm RSAP. 2020;16(4):595–8.
Barber R, Boote JD, Parry GD, Cooper CL, Yeeles P, Cook S. Can the impact of public involvement on research be evaluated? A mixed methods study. Health Expect. 2012;15(3):229–41.
Burke NN, Stewart D, Tierney T, Worrall A, Smith M, Elliott J, et al. Sharing space at the research table: exploring public and patient involvement in a methodology priority setting partnership. Res Involv Engagem. 2023;9(1):29.
Keane A, Islam S, Parsons S, Verma A, Farragher T, Forde D, et al. Understanding who is and isn’t involved and engaged in health research: capturing and analysing demographic data to diversify patient and public involvement and engagement. Res Involv Engagem. 2023;9(1):30.
Crooks J, Flemming K, Shulman C, Hudson B. Opportunities and challenges in involving people with lived experience of inclusion health as co-researchers in palliative and end of life research: a rapid review and thematic synthesis. Res Involv Engagem. 2023;9(1):25.
Van Malderen L, De Vriendt P, Mets T, Verté D, Gorus E. Experiences and effects of structurally involving residents in the nursing home by means of participatory action research: a mixed method study. J Am Med Dir Assoc. 2017;18(6):495–502.
Barnes M, Harrison E, Murray L. Ageing activists: Who gets involved in older people’s forums? Ageing Soc. 2012;32(2):261–80.
Gridley K, Brooks J, Birks Y, Baxter K, Parker G. Improving care for people with dementia: development and initial feasibility study for evaluation of life story work in dementia care. Health Serv Deliv Res. 2016;4(23):1–5.
Bethell J, Pringle D, Chambers LW, Cohen C, Commisso E, Cowan K, et al. Patient and public involvement in identifying dementia research priorities. J Am Geriatr Soc. 2018;66(8):1608–12.
Jones J, Cowe M, Marks S, McAllister T, Mendoza A, Ponniah C, et al. Reporting on patient and public involvement (PPI) in research publications: using the GRIPP2 checklists with lay co-researchers. Res Involv Engagem. 2021;7(1):52.
The research team also gratefully acknowledge Delyth Morris (Cardiff University’s medical subject librarian) for her sustained support given during development of the systematic search strategy.
This project was conducted at Cardiff University School of Medicine as part of a Population Medicine intercalated degree. No financial support was received for the research or authorship for this project.
Ethical approval and consent to participate
No ethical approval or consent to participate was required for this systematic review.
Consent for publication
The authors declare that they have no competing interests.
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Appendix 1. Search strategy
Search syntax used for bibliographic database searches*
Public involvement in research
Attitudes and approaches
Patient* adj3 public Involve*
public adj3 involve*
Patient* adj3 Engage*
Public adj3 engage*
Patient* adj3 Participat*
Public adj3 Participat*
Patient* adj3 Partner*
Public adj3 partner*
Patient* adj3 consult*
Public adj3 consult*
Patient* adj3 Evaluat*
Public adj3 evaluat*
Consumer* adj3 Participat*
Service user* adj3 research
Service user*adj3 involve*
Stakeholder* adj3 participat*
Stakeholder* adj3 involve
Long-term care Facil*
Long term care facil*
Appendix 2. Data extraction form
Date of review (reviewer)
Year of publication
Type of care establishment
Objectives and aims
Number of homes involved
PPI types and aims
Type of PPI
Aims of PPI
Decision or advice PPI are involved with
PPI and interactions
Groups of people involved
Amount of PPI people
Demographics of PPI (age, gender, ethnicity, relationship)
Interaction between PPI groups
Retention of PPI people
Recruitment and motivation
Recruitment of PPI members
Motivation of PPI people to become involved
Stages of PPI
Stages of project with PPI
Frequency of Involvement
About this article
Cite this article
Burgher, T., Shepherd, V. & Nollett, C. Effective approaches to public involvement in care home research: a systematic review and narrative synthesis. Res Involv Engagem 9, 38 (2023). https://doi.org/10.1186/s40900-023-00453-2