Table 4 identified barriers and facilitators to the inclusion of UK care home residents in research
Barriers | Facilitators |
|---|---|
Research Design | |
The sole use of existing networks, including ‘research ready’ care homes for example [32, 35, 46, 50] Care home staff responsible for choosing who they deemed as eligible to participate [37, 38, 40, 43, 54,55,56,57,58,59,60,61,62,63,64,65,66,67] The research burden of the chosen methods of data collection, including monitoring periods were discussed in included articles [39, 17, 52, 68, 69] Designs which require significant time and environmental requirements such as private space [53, 70, 71] | The use of existing networks during recruitment [32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51] Piloting of the recruitment process [33, 51] Researcher flexibility, including tailoring research methods and/or requirements to specific care home settings and/or residents [47, 48, 17, 52] Researcher experience in care home settings [53] |
Understanding and beliefs about research | |
Resident - 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 misunderstanding about what research is, what is required of them, and other related concerns [74,75,76] Care home staff - Lack of care home staff understanding and negative beliefs about research, including underlying research motives [34, 39, 45, 53, 59, 71, 80, 81] | Resident - Highlighting the potential benefits of research [17, 52, 70, 77,78,79] - Residents’ altruism [52, 74] Care home staff - Ensuring true understanding about the nature of the research being conducted, and staff having positive beliefs about the research [47, 75, 81] |
Communication | |
The approach to presenting research information to potential participants [59, 74] Difficulties in communication, including those caused by cognitive impairment and loss of verbal skills [74, 77] Fluctuations in resident capacity and in resident mood [17, 55, 72, 73] Poor communication between care home staff researchers, and relatives [17, 80] Poor communication between the research team and staff [33, 48, 49, 71, 74, 77, 81] | The approach to presenting research information to potential participants [59, 74] The communication of research information to residents in an accessible, tailored manner [45, 55, 59, 68, 70, 74, 82] Providing clear and honest information from the very start, as well as facilitating positive, clear and consistent communication with all stakeholders [47,48,49, 51, 52, 65, 67, 70, 71, 74,75,76, 78, 80, 83] |
Relationships | |
Researchers spending time at care homes before study commencement [34, 43, 67, 71, 74, 82, 84, 85] The benefits of developing positive relationships with gatekeepers, such as care home managers, were [65, 69] The use of a collaborative working style between the research team, residents, staff, and relatives [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 [47, 49] | |
Eligibility criteria | |
Resident - Age limitations [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] - Comorbidity (e.g., learning disability, terminal illness, cognitive impairment) [39, 41, 42, 56, 57, 60,61,62, 70, 76, 77, 79, 92, 94, 95, 98,99,100,101,102,103,104,105,106,107,108,109,110,111] - The exclusion of participants who lacked the capacity to consent to participation, with no option of utilising a personal consultee [34, 37, 38, 42,43,44, 61,62,63, 68, 72, 93, 98, 103, 109] - Exclusion of 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 [36, 41, 56, 57, 98, 101,102,103, 107, 109,110,111] - The requirement of an ability 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 [52, 109] Care home - Location of care home [32, 33, 40, 41, 43, 45, 54, 74, 84, 107] - Type of care home [32, 33, 36, 37, 41, 43, 45, 54, 74, 75, 110, 111] - Size of care homes [33, 37, 41, 45, 57, 84, 90] - Rating/quality of care homes, as decided by organisations such as the Care Quality Commission [33, 36, 37, 45, 47, 66, 74, 75, 110] - Care homes receiving special support from their local authorities were excluded in some included studies [110, 111] | Resident - 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 [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] - Utilising minimal eligibility criteria [32, 42, 44, 50, 52, 64, 79, 84, 88, 91, 104, 106, 110, 113, 114, 117] |
Preference-based decisions | |
Residents’ expressions of perceptions of disempowerment, including lack of autonomy, confidence, apathy and having worries about research participation [45, 55, 59, 61, 64, 74, 111] A lack of awareness about research participation opportunities, and being overlooked with regards to participation [52, 74, 118] Relatives’ unwillingness to take part, or in cases where personal consultee option was available, refused to consent or make a decision regarding resident participation, [17, 39, 55, 83, 86, 90, 119] The impact of gatekeeping and overprotective relatives [17, 54, 65, 69, 70, 74, 77, 87, 91, 112, 117] The impact of research ethics committees [53] The impact of legal frameworks [119] | Providing residents with the opportunity to participate in research, by directly asking them [74] |
Care home staff and environment | |
Time pressure felt by care home staff and workload factors [43, 47,48,49, 53, 59, 65, 71, 73, 75, 76, 78, 80] High staff turnover [39, 49, 52, 53, 65, 70, 71, 78, 81, 83] Staff lack of interest, engagement and negative attitudes towards research, participation, and facilitation [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] The culture within care homes [52, 54] A lack of private space and disruption of daily routines caused by research [34, 54, 55, 59, 65, 67, 73, 74, 77, 78] | Providing and communicating the benefits and incentives of research participation to care home staff [47, 49, 51, 52, 71, 106] Care home staff interest, support, and engagement in research [39, 47, 51, 52, 55, 68, 70, 71, 76, 81, 101, 108, 116] Manager interest in research [103, 114] Providing staff training and opportunities for knowledge development as part of the research process [47, 51, 70, 72, 76] Manager support of the research study [74, 77, 78, 81, 102, 108] Positive use of spaces that were chosen by residents, for example residents’ own bedrooms, to conduct research [17, 61, 65, 74, 104] The culture of care homes, specifically care homes with a culture of inclusiveness [45] |