“Research happens a lot in other settings—so why not here?” A qualitative interview study of stakeholders’ views about advance planning for care home residents’ research participation

Abstract

Background Underrepresentation of care home residents in research has resulted in a poorer evidence base for health care in care homes. Fewer opportunities to take part in research, as well as assumptions made by others about their interest or wishes, creates challenges for residents’ inclusion in research. Early discussions about research preferences and wishes may be beneficial. This qualitative study aimed to explore stakeholders’ views about how care home residents can be supported to communicate their wishes about research participation. Method Semi-structured interviews were conducted with 25 stakeholders: care home residents (n = 5), relatives (n = 5), care home staff (n = 5), other health and social care professionals who work with care homes (n = 6), and care home researchers (n = 4). Interviews were conducted virtually or face-to-face and data were analysed using thematic analysis. Results Views about resident research participation, the barriers and facilitators to their inclusion, and the role of advance research planning were iteratively organized into three themes: (i) We’re of no value to research; (ii) Research is difficult; and (iii) Advance research planning: good in theory, challenging in practice. Subthemes were also identified, and findings were discussed with a Patient and Public Involvement group for additional reflections. Conclusions Stakeholders identified a number of barriers to including care home residents in research, including knowing their preferences about research. The development of interventions to facilitate communication that can be adapted to individuals’ requirements are needed to support discussions and decision-making with care home residents about wishes and preferences for future research participation.