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Identifying barriers and facilitators to the inclusion of older adults living in UK care homes in research: a scoping review
BMC Geriatrics volume 23, Article number: 446 (2023)
Abstract
Background
With an ageing population, older adults will have more complex health and social care needs and many of these older adults will be living in care homes. Despite the growth in care home populations, care home residents are often excluded from research that could potentially benefit their care. The purpose of this scoping review is to explore resident-related barriers and facilitators to including older people living in UK care homes in research and to identify potential approaches to modify such barriers.
Method
The 6-stage scoping review methodology framework proposed by Arksey and O’Malley guided this review. Five electronic databases (MedLine, PsychINFO, Scopus, Web of Science, CINAHL) and grey literature were searched. Identified articles went through two levels of screening, and those deemed relevant were collated, summarised and reported using a thematic analysis approach.
Results
90 reports were eligible for inclusion and were synthesised into 7 themes and related subthemes: (1) research design; (2) understanding and beliefs about research (resident and care home staff); (3) communication; (4) relationships; (5) eligibility criteria (resident and care home); (6) preference-based decisions; and (7) care home staff and environment. Given the complex interplay of the factors identified, both direct and indirect factors were included.
Conclusions
A number of recurring barriers and facilitators to the inclusion of care home residents in research are reported. However, isolating resident-related barriers was complex as both direct and indirect factors must be considered as influential. Understanding the barriers and facilitators to inclusion will enable these factors to be addressed and increase the evidence-base for care provided to older people living in care homes.
Introduction
It has been estimated that by 2037, adults over the age of 65 will account for 24% of the UK population [1]. There are already an estimated 490,326 care home residents in the UK [2,3,4]. As a result of the ageing population, many more older adults may require the level of support provided by care homes [5].
Far less research is conducted in care homes compared to other healthcare settings, despite twice as many people living in care homes as there are hospital beds in the UK [6, 7]. Additionally, it has been reported that care home staff generally have less access to research training and support [7]. Staff would likely benefit from the development of interventions to support the creation of environments where opportunities for resident participation in research is able to take place and can be integrated into care [7]. Research priorities in care homes have been identified in previous research, including the need for better individualised and person-centred care [8].
Older adults, who often experience the most disease and require the most complex care needs, are generally underrepresented in research [9]. This results in research evidence that may not be generalisable to those who may require it the most [10, 11]. Although the prevalence of chronic health problems increases with age [12], older adults are often excluded from research due to both explicit and implicit restrictions, for example age limits or decisional capacity abilities [13, 14]. If research findings are to effectively inform practice, study participants should reflect the population to which the research is being applied [15]. Furthermore, there is a lack of research which has identified appropriate research methodology and strategies for recruiting older adult populations [15]. Underrepresentation and exclusion of older adults in research is apparent in facilities dedicated to the care of older adults, such as care homes [6].
The exclusion of care home residents in research has been suggested to be partly due to practical difficulties and ethical concerns about including this ‘vulnerable’ group in research [16]. However, all people have the right to be included in research regardless of their place of residence or cognitive abilities. According to the Alzheimer’s Society, 80% of older adults living in care home are estimated to have either dementia or severe memory problems (17). A high number of care home residents therefore lack the capacity to consent to research and are less likely to be included in research as a result. Where care home residents are included, it is often through proxy decision-makers, who may have little knowledge of what their views and attitudes may be or find the process too difficult, thereby limiting residents’ opportunities to express their own wishes [17, 18]. Proxy decision-makers, often termed personal consultees or personal legal representatives, refer to people who are engaged in caring for the participant (not professionally or for payment) or are interested in their welfare and are prepared to be consulted [19].
A previous systematic review, published in 2018, identified a number of challenges to conducting research in care homes [20]. The challenges were categorised into eight main themes: facility/owner factors; resident factors; staff caregiver factors; family caregiver factors; investigator factors, ethical/legal factors; methodological factors; and budgetary factors. The reasons for the exclusion of care home residents are multi-factorial, including structural inequalities from less research infrastructure and research capacity, a reduced research-orientated culture, and individual resident-related factors, such as cognitive impairment [20]. Reference to UK based studies or resident-related challenges were also primarily nested within a larger study, which limits the findings due to international differences in care homes and residents and thus the transferability of studies. The available international literature reporting challenges to conducting research in care homes is limited due to the fact that care homes, care provision and care home residents differ considerably between different countries [21, 22]. Further research is needed to explore these challenges with a focus on care home residents themselves. This will enable greater opportunities for research inclusion for residents, subsequently allowing them to have their voices heard, and receive quality, evidence-based care in the future [23].
To better understand why older adults living in UK care homes are often excluded, and therefore underrepresented, in research, this scoping review aimed to:
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identify resident-related barriers and facilitators to including older people living in UK care homes in research.
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identify potential approaches to appropriately modify identified barriers and facilitators.
The term ‘care home’ is used throughout this paper to refer to any long-term care facilities that older adults live in full time. This includes care homes, residential homes, and nursing homes.
Methods
Protocol and Registration
The protocol for this scoping review followed the scoping review protocol framework by Peters et al. (2022; [24]) and can be found at: https://osf.io/fdy78.
Design
This review follows the scoping review methodology framework proposed by Arksey and O’Malley (2005; [25]) with recommendations from updated versions of the framework by Levac et al. (2010; [26]) and the Joanna Briggs Institute [24, 27] taken into consideration when relevant. According to the methodological framework there are six different stages to consider when undertaking a scoping review: identifying the research question; identifying relevant studies; selecting studies; charting the data; collating, summarising, and reporting the results; and consultation. Whilst the consultation stage is suggested as optional by Arksey and O’Malley, it was included in this study in order to strengthen the findings and their relevance.
The broad nature of a scoping review, as discussed by Munn et al. [28] was deemed the best fit for this review from which some basic concepts in the research area, as well as key sources, concepts, gaps, and the amount and nature of available literature need to be identified. Guidelines from the Preferred Reporting Items for Systematic Reviews and Meta-Analyses, Scoping Review extension (PRISMA-ScR; [29, 30]) were also followed in this review.
Stage 1: Identifying the Research Question.
The research question driving this scoping review was: “What are the resident-related barriers and facilitators to including older people living in UK care homes in research?”
Stage 2: Identifying Relevant Articles.
For the purpose of consistency, the term ‘articles’ will be used throughout to refer to included materials (published papers, websites, protocols, blogs).
Eligibility Criteria. The identification of relevant articles followed the Population, Concept, Context (PCC) framework (see Table 1.), as recommended by the JBI [24, 27]. Articles were included in the review if they: (1) included care home residents, residents’ family members, care home staff, or researchers; (2) mentioned barriers or facilitators to inclusion, or suggestions/advice for modifying barriers or facilitators; and (3) took place in UK care home settings. In line with the broad nature of the review, no limits were placed on study design. Conference proceedings, protocols and systematic and literature reviews were excluded; however, the reference lists of review articles were searched to ensure that no key articles were missed. Only English language articles were included in this review considering the language abilities of the researchers, as well as time and cost constraints. Searches of all sources were confined to articles published between January 2005 and the date the searches were conducted (March 2022). This time limit ensured that the literature reviewed was relevant to the Mental Capacity Act (2005; [20]) before which the process for including people who lacked capacity to consent was not formalised. The Mental Capacity Act governs how incapacitated adults can be involved in research and provides for another person to be consulted for advice before an individual lacking capacity is included in the research [31]. The geographic context for the search was limited to the UK as different countries have different types of residential care for older adults. Additionally, different countries have different legal frameworks for research involving adults lacking capacity to consent.
Information Sources and Search Strategy. Electronic database searches of: Medline, Web of Science, Scopus, CINAHL and PsychINFO, were conducted by BN on 23-25th March 2022. A combination of terminologies, separated by key concepts, were tailored to each database with the help of a subject specific librarian. See Table 2. for search strategy.
Additionally, grey literature was investigated through unpublished literature (EthOS), whole site searches of relevant organisations (ENRICH, AlzheimersUK, British Society of Gerontology) as well as existing networks. Whole site searches were conducted using a Google search tool recommended by a consulted subject specialist librarian (‘search term:website’).
Stage 3: Selecting Articles.
One author (BN) performed the screening after having piloted implementing the eligibility criteria alongside another author (VS) with a random selection of articles. In screening level one, the title and abstract were reviewed for eligibility. During screening level two, the full article was reviewed against the eligibility criteria and advice was sought from another author (VS) for any articles where inclusion was unclear. Any disagreement about inclusion between BN and VS was referred to another author (FW) for discussion and resolution.
Stage 4: Charting the Data.
Data were extracted from the included articles according to the following fields: author(s) and year; source type; purpose; population; concept (barriers and facilitators); context; relevant author suggestions/advice for modification; and any other relevant comments.
The data charting form was taken from scoping review resources developed by the JBI (https://jbi-global-wiki.refined.site/space/MANUAL/4687579) and modified as relevant, per instruction of the JBI. Data charting for all included articles was completed independently by BN, with feedback provided by FW and VS.
After further familiarisation with the articles, barriers and facilitators were extracted and the number of articles that discussed each factor was recorded.
Stage 5: Collating, Summarising, and Reporting the Results.
Following identification of the barriers and facilitators to inclusion of care home residents in research, factors were placed into categories based upon the system level to which they were related (i.e., staff-related, resident-related, care home-related, research-related). Although aiming to identify resident-related barriers and facilitators only, due to the complex interactions with other system-level factors other intersecting and influential indirect factors were included. Each of the barriers and facilitators identified therefore fell into either direct or indirect categories, all with the potential to impact the inclusion of UK care home residents in research. Following familiarisation with the barriers and facilitators identified in the included articles, as is usual with scoping review methodology [29], the themes and sub-themes were iteratively developed through discussion with the team.
Stage 6: Consultation.
An online meeting was held in January 2023 with stakeholders to discuss the initial draft of the scoping review. The meeting included five participants, three of whom were Patient and Public Involvement (PPI) group members identified through Health and Care Research Wales. Perspectives shared by the stakeholder patient and public involvement members included those of care home staff, care home resident relative, and researcher.
A brief presentation of the scoping review was sent to members a week in advance with instructions to consider contributing input in the meeting based around their own expertise and perspectives. The aim of this consultation meeting was to clarify and/or validate our preliminary findings. The same presentation was shared in the meeting and members shared and discussed their own thoughts and perspectives, based on their own experiences, of the information presented.
The PPI group were consulted earlier on in the project during the initial stages of identifying barriers and facilitators to the inclusion of older adults living in UK care homes in research and so were familiar with the project and able to contribute valuable views.
Results
A total of 3809 articles were identified from the database searches and a further 125 from grey literature and other sources (see Fig. 1. for PRISMA-ScR flow chart). Following deduplication of articles, 1525 articles remained. All articles were uploaded to a reference management system, Endnote, where data management and both screening levels were completed against the eligibility criteria. After the screening of titles and abstracts during screening level 1, using the predefined eligibility criteria, a total of 1204 articles were excluded, resulting in 313 articles. Following the second level of screening, 223 were excluded based on full-text review, resulting in 90 articles for data extraction.
PRISMA-ScR flow chart of article selection
Article characteristics
The general characteristics of the articles included in this scoping review are reported in Table 1. 3809 journal articles and 125 articles from the grey literature search were initially retrieved. Of the 90 articles included, 84 reported potential barriers and 75 reported potential facilitators of inclusion of UK care home residents in research (see Table 3). Of the included articles, 30 also included advice or suggestions for improving the inclusion of care home residents in research (see Table 4).
Barriers and facilitators to the inclusion of UK care home residents in research
Alongside resident-related factors that directly affected the inclusion of care home residents, a number of indirect factors were identified which were viewed as important and influential and so warranted inclusion. Factors directly affecting inclusion refers to factors which are solely related to and impact the resident, such as cognitive impairment, whereas indirect factors to inclusion refer to impactful factors that residents have no control over and may even be unaware of, such as gatekeeping.
The complex barriers and facilitators to the inclusion of UK care home residents in research were synthesised into seven thematic categories: (1) research design; (2) understanding and beliefs about research (resident and care home staff); (3) communication; (4) relationships; (5) eligibility criteria (resident and care home); (6) preference-based decisions; and (7) care home staff and environment. See Table 5.
Research Design
A number of research design issues were discussed in the included articles, which posed barriers and facilitators to the inclusion of care home residents in research.
The use of existing networks during recruitment was a common approach and resulted in being an indirect facilitator to the inclusion of care home residents in research [32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51]. However, the sole use of existing networks, including ‘research ready’ care homes for example, may also present an indirect barrier for the inclusion of UK care home residents in research [32, 35, 46, 50], as the approach excludes those care homes that are not within those networks.
The piloting of the recruitment process was mentioned in two of the included articles and poses a potential indirect facilitator to inclusion [33, 51]. Piloting was considered helpful in terms of identifying challenges which can be addressed prior to recruitment. Researcher flexibility, including tailoring research methods and/or requirements to specific care home settings and/or residents was discussed in a number of included reports [47, 48, 17, 52], as was the importance of researcher experience in care home settings [53].
The research design choice of relying on care home staff to determine study eligibility was commonly reported by the included articles, posing a potential barrier to the inclusion of care home residents in research through issues of recruitment bias [37, 38, 40, 43, 54, 67]. Further, the burden, on care home residents and staff, of the chosen methods of data collection, including monitoring periods were discussed in included articles [39, 17, 52, 68, 69], as were designs which require significant time and environmental requirements [53, 70, 71], such as private space, all of which present potential barriers to the inclusion of care home residents in research.
Understanding and beliefs about research (resident and care home staff)
Resident
A number of the included articles discussed barriers around residents’ general lack of interest in participating in research, as well as initial interest and then disengagement [35, 36, 46, 17, 55, 59, 70, 72, 73]. Resident understanding about what research is, what is required of them, and other related concerns also posed a potential barrier for inclusion [74,75,76]. Highlighting to residents the potential benefits of research was the most common facilitator discussed in the included articles [17, 52, 70, 77,78,79], followed by residents’ altruism [52, 74].
Care Home Staff
A lack of understanding by care home staff and negative beliefs about research, including underlying research motives were discussed in a number of included articles [34, 39, 45, 53, 59, 71, 80, 81]. Ensuring accurate understanding about the nature of the research being conducted, and staff having positive beliefs about the research was reported in a number of included articles and offered a potential indirect facilitator to resident inclusion [47, 75, 81].
Communication
The approach to presenting research information to potential participants was discussed in some of the included articles, posing both a potential barrier and facilitator to the inclusion of care home residents in research [59, 74]. Communicating information to residents in an accessible, tailored manner was considered to be a direct facilitator to resident inclusion [45, 55, 59, 68, 70, 74, 82]. Providing clear and honest information from the start, as well as facilitating positive, clear and consistent communication with all stakeholders were factors also considered to be helpful [47,48,49, 51, 52, 65, 67, 70, 71, 74,75,76, 78, 80, 83]. One included article discussed the importance of effective communication ensuring true understanding [75]. Difficulties in communication, including those caused by cognitive impairment and loss of verbal skills were reported as direct barriers for inclusion in research for care home residents [74, 77]. Fluctuations in resident capacity and in resident mood also posed challenges to participation in research [17, 55, 72, 73].
Poor communication between care home staff, researchers, and relatives posed another potential indirect barrier to inclusion [17, 80], as did poor communication between the research team and staff [33, 48, 49, 71, 74, 77, 81].
Relationships
The importance of building rapport between the research team, residents, care home staff and relatives was discussed in many included articles. The importance of researchers spending time at care homes before study commencement was particularly commonly discussed and is a potential facilitator to inclusion [34, 43, 67, 71, 74, 82, 84, 85]. The benefits of developing positive relationships with gatekeepers, such as care home managers, were discussed also [65, 69].
The use of a collaborative working style between the research team, residents, staff, and relatives proposed a potential facilitator to the inclusion of care home residents in research [45, 50, 52, 55, 59, 61, 65, 68, 70, 78, 82, 83, 86,87,88,89]. Providing personalised feedback and a feeling of inclusivity for care home staff and residents was also mentioned as a positive experience and may indirectly facilitate resident inclusion in research [47, 49].
Eligibility criteria (resident and care home)
Eligibility of Residents
Strict resident eligibility criteria were the most common direct resident-related barriers to inclusion, with exclusion often based on age limits [32,33,34,35,36,37,38,39, 54,55,56,57,58, 68, 90,91,92,93,94,95,96,97,98,99,100,101] and comorbidity (e.g., learning disability, terminal illness, cognitive impairment) being the most common [38, 40, 41, 54, 55, 58,59,60, 68, 74, 75, 77, 90, 92, 93, 96,97,98,99,100,101,102,103,104,105,106,107,108,109]. The exclusion of participants who lacked the capacity to consent to participation, with no option of utilising a personal consultee, were reported [34, 37, 38, 42,43,44, 61,62,63, 68, 72, 93, 98, 103, 109] as well as those who did not have an adequate ability to communicate, understand, or engage in conversation [37, 44, 45, 58, 60, 102, 103, 107]. The requirement of a clinical diagnosis of dementia (as opposed to a likely diagnosis) was a potential barrier in a number of included articles [36, 41, 56, 57, 98, 101,102,103, 107, 109,110,111], as was the requirement to understand and communicate in English [34, 41, 43, 45, 55, 58, 60, 62, 74, 75, 95, 102, 103, 107, 109]. The requirement of a study partner posed a potential barrier was discussed in two articles [52, 109].
The allowance of another person being able to consent to participation on behalf of a resident who lacks the capacity to consent, i.e., a personal consultee, was the most frequently mentioned potential facilitator to inclusion in the included articles [32, 40, 41, 45, 53, 57, 58, 59, 64, 68, 74, 75, 77, 79, 82,83,84,85,86, 88, 90,91,92, 94, 95, 97, 100, 101, 105,106,107,108, 111,112,113,114,115,116]. Additionally, utilising minimal eligibility criteria was also found to be a potential facilitator to the inclusion of care home residents in research [32, 42, 44, 50, 52, 64, 79, 84, 88, 91, 104, 106, 110, 113, 114, 117].
Eligibility of Care Homes
The presence of strict care home eligibility criteria proposed an indirect resident-related barrier to inclusion for UK care home residents. Most commonly reported were the need to meet criteria for the location and type of care home [33, 34, 41, 42, 44, 46, 56, 76, 86, 109] and [33, 34, 37, 38, 42, 44, 46, 56, 76, 77, 112, 113], respectively. The size of care homes was another common eligibility criteria [33, 37, 41, 45, 57, 84, 90], as were the rating/quality of care homes, as awarded by organisations such as the Care Quality Commission [33, 36, 37, 45, 47, 66, 74, 75, 110]. Care homes who were requiring special support from their local authorities were also reported to be excluded from some research [110, 111].
Preference-Based Decisions
Residents’ expressions of perceptions of disempowerment, including lack of autonomy, confidence, apathy and having worries about research participation were discussed in a number of included articles and posed barriers relating to participation in research [45, 55, 59, 61, 64, 74, 111]. Further, a lack of awareness about research participation opportunities and being overlooked with regards to participation posed potential barriers to inclusion [52, 74, 118]. Providing residents with the opportunity to participate in research, by directly asking them, is a potentially empowering facilitator to inclusion which was discussed in one article [74].
Relatives’ unwillingness to take part, or in cases where a personal consultee option was available, refused to consent or make a decision regarding resident participation, presented a barrier to inclusion [17, 39, 55, 83, 86, 90, 119], as did the impact of what article authors referred to as “gatekeeping” and “overprotective relatives” [17, 54, 65, 69, 70, 74, 77, 87, 91, 112, 117].
The impact of external influences was discussed in included articles and were potential indirect barriers to research inclusion. The impact of research ethics committees was discussed in one article [53], as was the impact of legal frameworks [119].
Care Home Staff and Environment
Factors relating to the care home, including the care home staff and the care home environment creates both direct and indirect barriers and facilitators to the inclusion of care home residents in research.
Providing and communicating the benefits and incentives of research participation to care home staff was mentioned in a number of included articles and may provide an indirect facilitator to research inclusion [47, 49, 51, 52, 71, 106]. Care home staff interest, support, and engagement in research were reported to provide an indirect facilitator to research inclusion [39, 47, 51, 52, 55, 68, 70, 71, 76, 81, 101, 108, 116], as did care home manager interest specifically [103, 114]. A number of included articles also discussed the benefits of providing staff training and opportunities for knowledge development as part of the research process [47, 51, 70, 72, 76].
The impact of research on care home staff was the most common indirect resident-related barrier to inclusion, with time pressure felt by care home staff and workload factors most commonly discussed [43, 47,48,49, 53, 59, 65, 71, 73, 75, 76, 78, 80], followed by high staff turnover [39, 49, 52, 53, 65, 70, 71, 78, 81, 83]. Staff lack of interest, engagement and negative attitudes towards research, were the next most frequently discussed [39, 45, 47, 53, 55, 59, 75, 77, 81]. A lack of confidence in facilitating research was discussed in two included articles [59, 84]. Perceived lack of support from the care home manager [34, 74, 75, 78, 81] and the culture within care homes [52, 54] were also discussed in included articles. Conversely, manager support for the study was reported as an indirect facilitator [74, 77, 78, 81, 102, 108].
Limitations of the care home environment, including a lack of private space in which to consent residents and collect data, and disruption of daily routines caused by research, posed a barrier to resident inclusion [34, 54, 55, 59, 65, 67, 73, 74, 77, 78]. However, in a number of included articles, it was shown that the care home environment can be used to facilitate research participation, such as positive use of spaces that were chosen by residents, for example residents’ own bedrooms, to conduct research which facilitates privacy [17, 61, 65, 74, 104]. However, residents’ ability to have their own private room is not always available in all care homes.
Furthermore, the culture of care homes, specifically care homes with a culture of inclusiveness, was reported as a facilitator to the inclusion of residents in research [45].
Consultation Stage
When presenting our early synthesis to our PPI partners, we received comments about our choice of vocabulary, much of which reflected terms used by the authors of the literature included in the review. For example, the use of the word ‘overprotective’ in relation to relatives was disliked by one member, stating that it felt harsh and unfair.
Suggestions of additional visualisations of the results were made, such as the inclusion of a graphic showing the weighting of barriers and facilitators depending on how many times each came up in the included literature. The inclusion of a table stating which barriers could be tackled most easily compared to those more difficult to tackle was discussed also.
Further discussion related to one member’s own experiences of working in different types of care homes. For example, for researchers to consider that care home staff may have different time and workload demands dependent upon whether they are working in a residential or nursing home.
Overall, the discussion supported our preliminary findings, including the importance of care home staff as a factor. PPI members expressed their interest in taking part in the review process and shared their views on the importance of the topic throughout. One member shared their own experiences of visiting a relative living in a care home and the apparent issues of recruitment and pressures of high workload. This member also shared the view that staff often do not have English as a first language, making them more cautious towards research, and that it may be a lower priority for them as it contributes towards their already high workload. The facilitatory benefits of researchers spending time in care homes prior to study commencement was discussed and strongly agreed with by the group members. A suggestion for future research surrounding the topic of how to facilitate conversation between researchers and care home staff about research and its benefits was made by one member.
Changes made in light of the consultation stage included:
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The clarification of our definition of ‘care homes’ as homes which care is provided for older adults and not other types of care homes which might provide care for younger adults with disabilities.
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Adding more information to clarify that terms which may be less favourable, such as ‘overprotective’ have been used as these were terms used in the literature.
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Including the suggestion of exploring the topic of how to facilitate conversation between researchers and care home staff in future research.
Discussion
This scoping review set out to understand why older adults living in UK care homes are often excluded, and therefore underrepresented, in care home research with the aim of identifying resident-related barriers and facilitators to their inclusion and identify potential interventions to appropriately modify identified barriers and facilitators. The barriers and facilitators identified in the existing literature have been collated, synthesised, and reported in this review.
The majority of included articles were research articles conducted in care home facilities, although there were also a number of commentary articles from researchers about the processes of conducting research in care homes. Frequently reported barriers and facilitators to the inclusion of care home residents in research were grouped into seven thematic categories: (1) research design; (2) understanding and beliefs about research (resident and care home staff); (3) communication; (4) relationships; (5) eligibility criteria (resident and care home); (6) preference-based decisions; and (7) care home staff and environment. Approaches or solutions we suggest in light of these findings are presented in Table 5.
Barriers
Barriers to the inclusion of care home residents in research were mainly related to factors outside of the residents’ control, such as research methods and the communication and relationships between research systems and care systems.
The use of existing networks during recruitment, whilst beneficial when used alongside other methods of recruitment, poses a barrier when used as the sole method of recruitment. For example, the use of ‘research ready’ care homes results in the exclusion of the majority of care homes in the UK that we know are not registered as ‘research ready’ or actively engaging with research.
Strict eligibility criteria for participation, both for residents and for care homes, were identified in a majority of the included articles. Whilst necessary for any study to provide eligibility criteria in order to focus their population of interest, strict criteria relating to characteristics of care home residents, such as age, prevents the inclusion of residents that could otherwise provide a representative sample of the targeted population. The potential impact of excluding representative participants based on characteristics which may be unrelated to the research aim, or interfere with the research findings, may be unfavourable in relating findings to practice. Further, strict eligibility criteria for care homes, such as size, rating/quality and type limit research opportunities from even reaching care home residents who represent a population who reside in the variety of care homes available in the UK. This is in line with discussion by Patino and Ferreira (2018; [120]) regarding the impact of inclusion and exclusion criteria on the external validity of a study.
The lack of an opportunity for a relative or personal consultee to consent on behalf of residents who lacked capacity to consent to their own participation presented a barrier to inclusion. It is likely that including extra stages to obtain informed consent from those lacking capacity can be both time-consuming for researchers and present additional costs. This finding is in line with research which suggests that care home research can be challenging to conduct due to practical difficulties and ethical concerns [121]. Other practical difficulties and ethical concerns were identified from the review relating to the impact of external factors such as legal frameworks and research ethics committees. These findings are in line with a recent review of barriers and facilitators by Ritchie et al. (2023 [122]), which discusses data privacy regulations as a barrier to recruitment causing care home staff to involuntarily act as ‘gatekeepers’. Ritchie and colleagues suggest that by establishing residents’ and representatives’ preparedness to be approached at the point of care home admission, this barrier could be removed. Further, relatives’ unwillingness to take part in care home research or their refusal to consent on behalf of, or make a decision on, their relatives’ participation posed a barrier to resident inclusion. It may be possible that by establishing stakeholders’ preparedness at the point of care home admission, as suggested by Ritchie and colleagues, this barrier can be overcome.
More barriers than facilitators were identified in this scoping review relating to the theme of preference-based decisions. Residents’ lack of awareness of opportunities to participate in research were shared by a number of included articles and present an important barrier suggesting that current recruitment strategies are ineffective. Whilst research generally aims to investigate and discover ways in which we can improve quality of life of a target population, there is a paucity of research aiming to understand how care home residents feel about and understand the purpose and benefits of research, thus in some cases impacting their willingness to contribute or participate. Expressions of disempowerment by residents, where they questioned their abilities to contribute in a useful way to research, was apparent in the included articles alongside apparent lack of autonomy, confidence, apathy and worries about research participation. According to Self Determination Theory (SDT; Deci & Ryan, 1985 [123], 1991 [124]), perceived autonomy can result in feelings of empowerment and improve motivation to carry out tasks which are felt to be a product of one’s own choice. Improving perceived autonomy of older adults living in care homes could be beneficial in this research area. Informing and educating older adults living in care homes about research, and how they can be involved, may be a useful step towards increasing opportunities for inclusion.
Facilitators
Not surprisingly, this review has identified that a number of facilitators to care home resident inclusion in research correspond to identified barriers. For example, poor communication between researchers and residents, relatives and care home staff resulted in more barriers, whereas clear, consistent, and positive communication between individuals and organisations were a facilitator to resident inclusion. Further, researchers providing personalised feedback and a feeling of inclusivity for staff and residents was reported in the included literature as a positive experience for stakeholders. Ritchie et al. (2023 [122]) also identified challenges relating to communication between the research team and care home staff outside of the care home setting. Furthermore, difficulties in communication experienced by residents, which may pose a barrier to inclusion, can be rectified through the presentation of research information in an accessible and tailored manner, thus facilitating inclusion. Researchers are responsible for modifying most factors which present as barriers to the inclusion of care home residents in research. Researcher flexibility and experience working with care homes and residents is of great importance in tackling challenges.
Within the theme of relationships, a number of other facilitators were identified. The use of a collaborative working style between all stakeholders was discussed as beneficial in a number of articles as beneficial as were the benefits of developing positive relationships with gatekeepers, such as care home managers. Building rapport with stakeholders, for example by researchers spending time in care homes before study commencement, was a facilitator identified in a number of included studies. These findings are aligned with reports of beneficial research outcomes of collaborative working styles in other health care settings [125].
Within the care home staff and environment theme, capitalising on the unique care home environment such as private rooms and communal social spaces, can facilitate resident inclusion, as shown in some of the included articles. In addition, the high workload and time pressures faced by staff, identified in the included articles, may be addressed by manager support of the research study making researchers aware of the most suitable times to carry out research related tasks. Investing in staff development through training may facilitate positive staff engagement in research, which was identified as a facilitator to the inclusion of care home residents in research. This finding is in line with Gordon et al. (2022 [126]), who suggest that investing in the development of the care home workforce can help to make staff feel more valued and give them the recognition they deserve to match the importance of their work.
Further, by removing additional research pressures, care home staff may be more willing to facilitate resident recruitment. This flexibility relates to suggestions from other included articles, stating that patience, flexibility and need for understanding complexities of care home environments are key researcher qualities needed for successful recruitment and data collection.
Strengths and Limitations
In accordance with scoping review methodology, we did not include an assessment of the methodological quality of included articles. However, the aim of this review was to identify underlying concepts in the research area, as well as key sources and the nature of available literature [29], for which a scoping review was the most appropriate approach [24]. Whilst a large amount of literature was identified, we identified a number of common themes which allows confidence in our application of the broad yet rigorous scoping review methodology.
Although a comprehensive search was carried out, with a focused but inclusive search strategy, it is possible that all published articles in this area were not identified.
A strength of this review is the inclusion of both direct and indirect barriers and facilitators which were identified during data extraction and are thought to have a great impact on older adults’ inclusion in research. Other strengths include that data were included from a wide range of study types and stakeholders’ experiences, enabling the findings to be drawn from these wider perspectives rather than those of individuals studies or groups. A further strength of this scoping review was the inclusion of the consultation stage of Arksey and O’Malley’s methodology framework which allowed the exploration and clarifying of our preliminary findings using additional expertise and perspectives of stakeholders.
Future Research and practical implications
This scoping review provides new insights on the barriers and facilitators to UK care home residents’ research participation presented in the existing literature. Many of the barriers have the potential to be modified, thus improving recruitment and inclusion. It may be of interest for future research to investigate barriers and facilitators for different types of care home or for residents with differing characteristics (e.g., those with capacity to consent and those without). Furthermore, future research may also consider the different barriers to the inclusion of care home residents in research depending on the type of research methodology (e.g., randomised controlled trials vs. survey).
Apparent from the findings of this review was a lack of literature reporting the views of relevant stakeholders (i.e., residents, relatives, staff, and researchers) about the opportunities for older adults living in care home to get involved in research.
Future research may also consider focusing on the development of a simpler process of involving people with capacity to consent in research, with a specific focus on care home residents. This would need to include individuals living with dementia who represent the majority of older adults living in care homes.
Furthermore, future research to explore how residents’ wishes and feelings about research participation, and the quality of understanding about research by this population may be useful in improving recruitment practice.
Finally, attempts to address the identified barriers to resident inclusion can be made using the solutions identified in this review. Tools have recently been developed which aim to help researchers to design trials that are more inclusive of particular underserved populations (e.g., the INCLUDE Ethnicity Framework [127], and the INCLUDE Impaired Capacity to Consent Framework [128]) but have not yet been applied to trials being conducted in care homes. If these are successful, researchers may expect their results to be more generalisable to this underrepresented population who may benefit the most.
Conclusions
Care home residents remain an under-served group in research, which results in less evidence about how to best care for this group than those receiving care in other settings. This scoping review identified a number of complex, interacting barriers and facilitators to the inclusion of older adults living in UK care homes in research.
The findings have enabled a better understanding of common barriers and facilitators to the inclusion of care home residents in research, as well as presenting potential ways these factors can be modified to improve research within the field.
Further research is required in order to explore the interaction between the direct and indirect barriers and facilitators to UK care home resident inclusion in research and identify interventions that target the modifiable barriers and facilitators to improve inclusion.
Data Availability
Supporting data and materials used in this paper can be accessed online through various public databases. The datasets used and/or analyses during the current study are available from the corresponding author on reasonable request.
Abbreviations
- PPI :
-
Patient and Public Involvement
- CQC :
-
Care Quality Commission
- MCA :
-
Mental Capacity Act
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Acknowledgements
We would like to thank subject librarian Mariann Hilliar for their contribution to the development of our literature search strategy.
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The research presented in this paper was carried out as part of a PhD Studentship awarded to Brittany Nocivelli by Health and Care Research Wales.
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BN: investigation, formal analysis, writing – original draft, VS: conceptualisation, validation, supervision, writing – review and editing, KH: validation, supervision, writing – review and editing, CW: validation, supervision, writing – review and editing, FW: validation, supervision, project administration, writing – review and editing. All authors reviewed the manuscript.
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Nocivelli, B., Shepherd, V., Hood, K. et al. Identifying barriers and facilitators to the inclusion of older adults living in UK care homes in research: a scoping review. BMC Geriatr 23, 446 (2023). https://doi.org/10.1186/s12877-023-04126-3
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DOI: https://doi.org/10.1186/s12877-023-04126-3