Table 1 General characteristics of included studies
First Author, year, country of study | Topic of study | People involved (lived experienced experts) | Setting of involvement | Study subjects | Theoretical underpinnings of involvement | Methods used | Quality score |
|---|---|---|---|---|---|---|---|
Baur and Abma, 2012, NL [35] | Collective involvement through relational empowerment to improve the mealtime experience in a residential home | 7 older female residents all aged over 80, all with a physical disability or illness. 4 involved persons lived in residential care apartments, the other 3 lived in sheltered accommodation | Residential home | n/a | Participatory action research and appreciative inquiry | Homogenous action group, heterogenous dialogue meetings, larger resident meeting | 17/18 |
Beukema and Valkenberg, 2007, NL [36] | Implementation of a demand-driven approach to elderly care through exemplarian action research in five nursing homes | ? representatives of clients ? managers ? workers | In five homes for elderly care | n/a | Exemplarian action research | Steering committees, training sessions, interviews, participatory observation, group discussions, working groups | 12/18 |
Brown et al. 2017, UK [37] | Critical reflection on involvement of the public in research on intimacy and sexuality in care homes, and development of recommendations for involvement in research | 2 older community representatives, one male and one female. One was aged 81 years, the other 74 years | Skype, public places such as cafes, and at the university | ? interviewees ? focus group participants | Public involvement and service-user involvement | Research team meetings, email discussions, evaluative interviews, workshop | 15/18 |
Clarke et al. 2018, UK [24] | Secondary data analysis of qualitative data in partnership with persons living with dementia | 34 people met in four groups of 1–8 people, with experience of living with dementia, either personally (n≈21) or as a family caregiver (n≈10). All involved persons lived in their own home or had moved to live with a relative | Groups met in their normal peer support group location | 106 people living with dementia | Participatory research and responsive research | Participatory secondary data analysis workshops | 13/18 |
Di Lorito et al. 2020, UK [13] | To propose a model for good practice in co-researching with carers of people living with dementia | 2 people with lived experience of caring for someone living with dementia | At the university, homes of people living with dementia and informal settings | 14 people living with dementia and their carers | Patient and Public involvement | Meetings, training sessions, co-research interviews, data-analysis, personal diaries, workshop Research Cycle Model for good practice in co-research | 18/18 |
Flavin and Sinclair, 2019, AU [25] | Consumer involvement in a research project investigating supported decision making among people living with dementia | Three advisory groups with in total: 3 people living with dementia 3 current or former care-partners of a person living with dementia 18—45 industry and advocacy representatives | The three advisory group meetings were run in three states | n/a | Patient and Public involvement | Advisory group meetings based on consensus approach, consultation meeting | 7/18 |
Froggatt et al. 2015, UK [38] | Integration of involvement in research into the design and delivery of a multi-site research study based in care homes | 6 public involvement in research (PIR) members were involved, who all had prior personal or work experience in care homes. Reports on the activities of 5 PIR members | Six care homes | 84 residents 53 care home staff 57 primary care staff 3 relatives 12 undefined stakeholder interviews + focus groups with 8 care home and primary care staff | Public involvement in research | Project management meetings, fieldwork meetings and training, assistance in interviews and focus groups, project team meetings, validation event | 15/18 |
Giebel et al., 2019, UK [26] | Involvement of people living with dementia and their carers in a programme on effective home support in dementia | Small reference group: 8–12 informal carers (current and previous) ? people living with dementia ? lay public involvement 11–15 members of the research programme Virtual lay advisory group: 20 informal carers | Small reference group meet face-to-face (setting not described) Virtual lay advisory group: consulted through email | n/a | Public involvement in research, user/researcher roles action research | Small reference group and virtual lay advisory group | 14/18 |
Goeman et al., 2019, AU [27] | Description of the co-design process in a project that evaluated how the key worker role can best support people living with dementia in the community setting | Expert working group: 1 person living with dementia 1 care-partner 6 representatives of partner organisations Reference group: 2 people living with dementia 1 care-partner 2 consumer representatives 7 representatives of departments/organisations/ health professionals | Teleconferences and two face-to-face interactive workshops (setting not described) | ? consumers ? support workers ? organisations providing support worker models | Consumer and community involvement | Expert working group, reference group, teleconferences, face-to-face meetings, workshops | 9/18 |
Gregory et al., 2020, EU [28] | Description of the approach to setting- up involved persons-panels in a pan-European cohort study concerning risks for developing Alzheimer's disease | 34 persons who were cognitively healthy or had mild cognitive impairment were involved in 5 country-wide panels (7–12 people) (divided into local panels) and 1 central panel (6–10 people) | Local centres | 2000 participants in longitudinal cohort study | Patient and Public involvement | Local and central Patient and Public involvement panels | 16/18 |
Hanson et al., 2007, SE [29] | Development of a user-friendly technology-based support service in partnership with older people with early-stage dementia and their family members | Development group: 7 persons with early-stage dementia 1 spouse Testing group, met in five groups: 19 persons with early-stage dementia 12 family members | Local day centre | n/a | Scandinavian participatory design | Discussion groups, reviewing platform session, interviews, focus groups | 16/18 |
Hassan et al., 2017, UK [30] | Involvement of members of the public in informing design and procurement decisions regarding connected health wearables in dementia research | Group 1: 5 people living with dementia (age > 65), 4 informal carers Group 2: 8–12 people with young onset dementia (age < 65) Group 3: 2 people with mild cognitive impairment, 1 spouse Group 4: 9 people without memory problems (age > 50) | Dementia resource centre (people living with dementia and carers), drop-in support group (Dementia < 65 yrs.), University of Manchester (no known memory problems > 50 yrs.) | n/a | Patient and Public involvement | Interactive workshops, drop-in sessions and meetings | 14/18 |
Mann and Hung, 2019, CA [31] | Discussion of shared experiences on conducting action research together in a study concerning improvement of dementia care | A man diagnosed with Alzheimer's disease at the age of 58, 8 years prior to the research project | Medical unit (31 beds) for older people living with dementia or cognitive impairments in hospital and meetings in a coffee shop | 7 patients living with dementia, 50 staff (including 30 nurses, 5 health practitioners, 15 physicians, and 1 senior administrator in leadership) | Action research, appreciative inquiry and COINED-model [23] | (only the methods used with Jim) Research meetings in coffee shop, email, education workshop | 15/18 |
Poland et al. 2019, UK [32] | Critical evaluation of implementation of Patient and Public Involvement in promoting independence in dementia study | 5 carers (co-applicant, advisory group, co-researcher in data collection) 8 people with mild to moderate dementia (co-research in data analysis, met in 2 groups of 4) | n/a | n/a | Patient and Public involvement | Co-applicant, PPI advisory group, co-research interviews, data-analysis workshops | 16/18 |
Shura et al. 2010, USA [39] | Advance the process of culture change within long-term care and assisted living settings by engaging residents directly in the process as experts | 28 female nursing home residents 9 male nursing home residents 9 female assisted living residents 3 male assisted living residents All with varying levels of physical and cognitive challenges | 2 assisted living care units and 5 care units in a nursing home | n/a | Participatory action research | Seven unit specific resident/participatory action groups | 12/18 |
Stevenson and Taylor, 2019, UK [33] | Involvement of persons living with dementia as co-researchers in qualitative analysis of risk communication in dementia care (concepts and communication) | 4 persons with early-stage dementia, two male and two female; two are aged under 65, one between 70–74 years, and one between 75–79 years | Location of Alzheimer's Society Service User Review Panel | ? interviews with persons living with dementia, healthcare professionals and family carers | Patient and Public involvement (INVOLVE) | Data analysis session | 15/18 |
Swarbrick and Doors 2018, UK [23] | Development of the CO-researcher INvolvement and Engagement in Dementia (COINED) model in co-production with people living with dementia | 3 inquiry groups with 4–18 members based on prior established research groups of people living with dementia | Familiar venue of pre-existing research groups | n/a | Co-operative inquiry | 3 inquiry groups COINED-model | 13/18 |
Tanner, 2012, UK [34] | Involvement of people living with dementia as co-researchers in research on experiences of transitions between care services | 2 male (71 and 77) 1 female (60) All had a diagnosis of dementia and had undergone a recent transition within or between care-services. They all lived with their spouse and had mild or moderate dementia | Training in familiar location and interviews in the homes of persons living with dementia | 5 interviews with people living with dementia (most were recently diagnosed) | Co-research | Training sessions, co-research interviews, team meetings | 14/18 |