Table 1 Characteristics of included studies
Author(s); country | Study objectives | Study type/design | Participants characteristics | Duration | Engagement strategies |
|---|---|---|---|---|---|
Spiers et al., 2021; UK | To understand what matters to people living with multiple long-term conditions and identify priorities for future research | Multi-methods design | Older adults with multiple long-term conditions (age 80 years and older) and their informal caregivers (n = 130) | One-off (not clear) | Survey interview workshop |
O’Keefe and Hogg, 1999; UK | To develop ways of reaching house-bound people and enabling them to give their views in planning and monitoring health and social care | Case study design | House-bound older adults (age 70 years and older) and their informal caregivers (n varied at different points in time throughout the project) | On-going (6 years). Focused on building infrastructure for user involvement | Survey Interview Group discussions Telephone conferencing |
Keogh et al., 2021; Ireland | “To create a pathway for the voice and experiences of people with dementia and family caregivers to influence upcoming legislation on home caregivers currently represented through advocacy but not through direct voice using two innovative methods” [17] | Qualitative research design | Older adults with dementia (age 65 years and older; n = 10; 5 males, 5 females) and informal caregivers (age not reported; n = 28; 5 males, 23 females)a | One-off involvement but with previous years of discussion with people with dementia Policy cafe (2.5 h) Careers’ assembly (1 day) | Policy café carers’ assembly |
Kaambwa et al., 2015; Australia | To provide empirical evidence on the features of consumer-directed care (CDC) most important to older adults and their informal caregivers | Quantitative research design | Older adults (mean age 80 years; n = 87; 75% females) and caregivers (mean age 74 years; n = 30; 53% females) | One-off (not clear) | Discrete choice experiment |
Jowsey et al., 2011; Australia | To compare the recommendations for chronic illness care made in the National Health and Hospital Reform Commission (NHHRC) final report with suggestions made by people with chronic illness and family caregivers of people with chronic illness in a recent Australian study | Qualitative research design | Older adults with chronic illnesses (age 65 years and older; n = 52) and family caregivers (n = 14)b | One-off (40–90 min) | Semi-structured interviews |
Harrison et al., 2021; UK | To explore the use of photo-elicitation to involve older adults on the issue of age-friendliness in a rural area | Qualitative visual methodologies | Older adults (age 60 years and older; n = 13; 10 females, 3 males)c | Ongoing (6 months). Authors reported that participants continued as co-researchers | Photo-elicitation |
Gauvin et al., 2019; Canada | To engage older adults with complex health and social needs, and their caregivers, to improve hospital-to-home transitions | Qualitative facilitated panel discussions | Older adults with complex needs (n = 8) and their caregivers, (n = 4)d | One-off (1 day) | Citizen panel |
Degeling et al., 2018; Australia | “To elicit informed views from Australian women aged 70–74 regarding the acceptability of ceasing to invite women their age to participate in government-funded mammography screening” [46] | Qualitative research design | Women aged 70–74 years with no personal history of breast cancer (n = 34) | One-off (2 days) | Community juries |
Chuengsatianup et al., 2019; Thailand | “(1) To examine how public participation in health policy can be actualized through a citizens jury as an operational model (2) To understand the strengths and weaknesses of the ways in which the idea was made operational, and (3) To provide recommendations for further use of the model” [29] | Qualitative research design | Caregivers of older adults (age 35–75 years; n = 12; 5 females, 7 males) | One-off (4 days) | Citizens’ jury interviews Focus group discussions |
Chappell, 1997; Canada | To understand views of older adults on Pharmacare reference-based policy | Qualitative research design | Focus group: older adults (age 65 years and older; n = 51; 30 females and 21 males Interviews: Older adults (age 65 years and older; n = 1699) | One-off (focus group not clear; telephone interviews 30 min) | Focus group discussions Telephone interviews |
Buman et al., 2012; USA | To describe a method for engaging older adults in policy regarding food and physical activity | Qualitative visual methodology | Older adults (age 65 years and older; n = 9–12) | Ongoing (1 year and 3 months) | Photovoice and audio recordings |