Table 2 Study summary characteristics
Study author | Country | Study type and topic | Type of PPIa (PPI terminology used by authors) | Characteristics of care homes (n = care homes involved) | PPI members and stakeholders | Characteristics of PPI members and stakeholders (n = PPI stakeholders involved) |
|---|---|---|---|---|---|---|
Aubrecht et al. [25] | Canada USA | Commentary on the lived experiences of disabled adults living in long-term care homes | Partnership (co-researchers, co-authors) | Residential long-term care (n = 3) | Disabled residents and policy decision-makers | Female residents between 28 and 48 years with physical disabilities (cerebral palsy, multiple sclerosis, muscular dystrophy) (n = 3) |
Brown et al. [26] | UK | Critical reflections to develop recommendations to optimise effective PPI in research | Partnership (community representatives) | Care home (n = not specified) | Older members of the public | Community representatives of White British ethnicity (1 female was 74 years and 2 males were 56 and 84 years) (n = 3) |
Burns et al. [27] | UK | Case studyb exploring how participatory organisational research amplifies the voices of older people | Partnership (co-produced) | Care home (n = 8) | Residents, relatives, friends, care assistants, nurses, care managers, care homeowners and community stakeholders | 5 residents, all aged 85 and over and 4 relatives of residents living in care homes) (n = 9) |
Chamberlain et al. [28] | Canada | Priority setting methods to engage citizens and stakeholders to improve the quality of care and life in long-term care settings | Consultation (team members, citizen engagement) | Long-term care home (nursing home, personal care homes) (n = 97) | Voices Of Individuals, family and friend Caregivers Educating uS (VOICES) Residents, future residents, family/friend caregivers, decision-makers and long-term care owner-operators | 9 VOICES members, 1 direct care provider, 1 provincial ministry of health representative, 2 long-term care owner-operators, 4 provincial health authority representatives, and 2 provincial association representatives (n = 19) |
Charles et al. [29] | Canada | Case studyb of an intervention development to measure resident care requirements in the nursing home | Placation (research transfer agents) | Long-term care home (nursing home) (n = 1) | Long-term care facility owners, operators, care providers and facility staff | Not specified |
Eisenstein et al. [30] | USA | Process evaluation focused on older people and their caregivers’ experiences within research | Partnership (Sages) | Skilled nursing facility (a short-term, long-term care and dementia care facility) (n = 1) | Bureau of Sages Community representatives, researchers, healthcare professionals | 4 Lieberman community members, 5 stay-at-home members, 6 researchers/healthcare professionals (n = 15) |
Elliott et al. [31] | Canada | Commentary on the development of COVID-19 research aims with older adults | Partnership | Community-dwelling Assisted living accommodation (n = not specified) | Seniors helping as research partners (SHARP) Community-dwelling older adults and family caregivers who provide support to older adults | SHARP members, the majority of White British ethnicity, all aged over 65 years (12 females and 6 males) (n = 18) |
Evans et al. [32] | UK | Evaluation on the role of older people in research to improve the standards of care and quality of life for care home residents | Partnership (community researchers and evaluators) | Care homes (n = 10) | Partnerships for older people project (POPPs) Older people, Representatives from Gloucestershire Primary Care Trust, Gloucestershire County Council and Gloucester Older Persons’ Assembly | Community representatives (n = 4) |
Froggatt et al. [33] | UK | Evaluation of the integration between primary health and care home service provision | Partnership | Care homes (n = 6) | Individuals with prior experience engaging with care home staff and residents | Not specified |
Goodman et al. [34] | UK | Longitudinal mixed-methods study exploring the experiences of living and dying of older people living in care homes | Partnership (co-researchers, critical friend) | Care homes (n = 3) | Public Involvement in Research Group (PIRg) Family/friend caregivers | PIRg members (n = 4) |
Griffiths et al. [35] | UK | Clinical service evaluation focused on maintaining and improving mouth care for care home residents | Partnership (cooperation, co-production) | Care homes (n = 2) | Care home nurses, care workers, managers and specialist colleagues with experience in dentistry, behaviour and systematic reviews | Care home staff (n = 8) |
Hewitt et al. [36] | Guyana | Process evaluation of an intervention development to improve the diet, health and quality of life in a residential home | Consultation (focus group discussions and informal conversations) | Non-profit residential home (n = 1) | Residents, domestic staff, residential home management and community stakeholders | Residents of African descent, between 73 and 99 years. (10 females and 4 males) (n = 14) |
Hoffman et al. [37] | USA | Intervention development to facilitate shared decision-making for older adults and their families | Partnership (co-production, codesign, stakeholder advisory panel) | Aging resource centre (n = 1) | Stakeholder advisory panel Older adults, caregivers, occupational specialists | Members of the stakeholder advisory panel (2 older adults, 2 family caregivers, 2 decision scientists, 4 informaticians, 3 geriatric psychiatrists and 3 memory care specialists) (n = 16) An additional 12 older adults and caregivers involved at later stages in the project |
Johannessen et al. [38] | Norway | Mixed-methods study of an intervention development to improve quality and safety in nursing homes | Placation (co-researchers, future users) | Nursing homes (n = 2) | Nurse counsellors, PPI representatives, patient ombudsman and managers of nursing homes and home care | Co-researchers (n = 7) |
Killett et al. [39] | UK | Organisational factors associated with mistreatment of older people in care homes | Consultation and Placation (peer researchers, key informants) | Residential care home (n = 8) | Residents, family caregivers and older people with personal experience of care homes | Not specified |
Logan et al. [40] | UK | Multicentre, cluster randomised controlled trial of an intervention development to prevent falls in older people in care homes | Partnership (co-design, hub-and-spoke approach) | Care homes (n = 10) | Hub PPI member: Former caregiver for a care home resident Spoke PPI members: care home manager, family caregiver, patient representative and associated stakeholders | 1 Hub PPI member 4 Spoke PPI members: retired care home manager (female), retired medic (male), carer for a relative with dementia (male), patient research ambassador and a lay chairperson for NIHR (female) (n = 5) |
Mann et al. [41] (Findings and direct quotes from Chamberlain et al. 2020) | Canada | Reflections on utilising priority setting methods to engage citizens and stakeholders to improve the quality of care and life in long-term care settings | Consultation (team members, citizen engagement) | Long-term care home (nursing home, personal care homes) (n = 97) | Voices Of Individuals, family and friend Caregivers Educating uS (VOICES) Residents, future residents, family/friend caregivers, decision-makers and long-term care owner-operators | VOICES members: 1 direct care provider, 1 provincial ministry of health representative, 2 long-term care owner-operators, 4 provincial health authority representatives, and 2 provincial association representatives (n = 9) |
Oude et al. [42] | Netherlands | Context mapping study exploring the impact of losing items and assistive devices in nursing homes | Placation (expert, co-design) | Nursing homes (n = 2) | Nursing home workforce | Participants’ average number of years active in the workforce 21 years (12 females, mean age = 47 years) (n = 13) |
Scheffelaar et al. [43] | Netherlands | Case studyb evaluating the quality-of-care relationships between service users and care professionals in long-term care | Partnership (co-researcher, co-author) | Long-term care facilities (n = 3; older adults, mental health, and intellectual disability teams) | Co-researchers: residents Stakeholders: representatives of care providers and branch organisations, nationwide client council organisations, staff from care organisations and health insurers | Co-researchers who were physically frail (3 females and 2 males) (n = 5) |
Shura et al. [44] | USA | Participatory action research to promote change in the culture of long-term care facilities | Placation (co-researcher, experts) | Continuing care retirement community (n = 4 units; assisted living, nursing home and 2 specialised memory support) | Research groups: residents, family caregivers and care home staff | 7 research groups (2 assisted living units and 5 nursing home units). Each research group had 4–7 residents, 1–2 family members and 1–3 staff (n = 75) |
Smith et al. [45] | UK | Retrospective reflections on engaging care home managers and older adults in research | Partnership (research/study advisory group) | Care homes (Study 1 = 6 homes and Study 2 = 34 homes) | Research advisory group: care home managers, representatives from local authorities, PPI representatives, and the Care Quality Commission | Care home managers (n = 30) |
Stocker et al. [46] | UK | Reflections on the impact of PPI in care home research | Consultation (PPI partners) | Care home (n = 1) | University-supported Care Home Interest Group (CHIG) Health-care professionals, care home staff, local authority staff, clinical governance/research support roles | Workshop 1: 7 CHIG members Workshop 2: 4 CHIG members (n = 8) |
Stockigt et al. [47] | Germany | Evaluating the stakeholder experience of an intervention development for the use of soft physical touch to enhance wellbeing of elderly patients | Consultation (stakeholder involvement) | Nursing home (n = 1) | Patients with chronic pain, nurses, experts of therapies using physical touch, and staff of the Institute of Social Medicine of the Charité and the Centre for Quality in Care | Stakeholders (n = 18) |
Walsh et al. [48] | UK | Mixed-methods study of an intervention development targeting antipsychotic prescribing for nursing home residents with dementia | Consultation (advisory groups) | Nursing home (multisite study) | Residents living with dementia, health and social care professionals, family caregivers, advocacy groups and academics | Advisory group members = 4 residents (2 females, 2 males) and 2 female family caregivers (n = 6) |
Walshe et al. [49] | UK | Four-stage process of an Intervention development to utilise Namaste Care in the nursing home setting | Partnership (PPI representatives, co-design) | Nursing home (n = not specified) | Nursing care home staff (includes managers, nurses, care assistants, activity coordinators or volunteers), family members/carers and PPI representatives | 18 staff, 1 volunteer and 5 PPI members (n = 24) |
Willis et al. [50] | UK | Reflections of the co-production of research promoting LGBT inclusion in care homes for older people | Partnership (co-production, community advisors) | Residential Care homes (n = 6) | Community advisors: LGBT volunteers and ally from the local community | Community advisors aged 35–65 years of variable ethnic backgrounds, White British, Jewish, British-Asian and Bangladeshi. There were 2 Lesbian, 3 Gay, 1 Queer and 1 Transgender volunteer (n = 8) |
Woelders et al. [51] | Netherlands | Participatory action research care home engaging elderly care residents in research via dialogue approaches | Partnership | Residential Care home (n = 1) | Residents, professional team leaders and spiritual counsellors (facilitators) | 2 males facilitators aged 25 and 50 years 10 residents aged between 67 and 95 years (2 males and 8 females) with physical impairments including immobility, hearing and visual problems and loss of memory (n = 12) |