On User Involvement in Research on Ageing and Health

Abstract: The aim of this thesis was to explore the perceptions of, prerequisites for and benefits of user involvement among older people, persons with functional impairments and other user groups important to the research area. By using an adapted conceptual tool to categorize the various user involvement studies comprising the thesis, the aim wasalso to reflect on the importance of study design for the outcomes of the user involvement, and thus to contribute to the development of generalizable knowledge and cumulative knowledge in research on ageing and health.The PhD thesis consists of four empirical studies that are linked to four different research projects. Two of the studies constituted research about user involvement and had a quantitative design, whilst two studies consisted of research with user involvement and were qualitative in their design.Study I consisted of a study with user involvement and aimed to test and evaluate an mHealth application for older people with mild cognitive impairment (MCI) and their informal carers prior to its launch in a large-scale randomized controlled trial. The user satisfaction evaluation was conducted via a structured interview in a clinicalenvironment with user representatives for both user groups (N=38). Study II comprised the second study with user involvement and focused on a research circle where researchers (N=3) and user group representatives (N=12) with an interest and experience of issues related to housing and health in Sweden during three sessions (3x 3h) strived to untangle the complex issue of accessible housing provision in Sweden.Study III (N=881) was a quantitative study about user involvement and consisted of a survey study (online/paper/phone) directed at older people in the general population and aimed to explore their awareness of and attitudes to user involvement in research. The second quantitative study (Study IV; N=147) was directed at older people from senior citizens organisations and people with functional impairments from disabilityassociations. The study was linked to the Citizen Science (CS) initiative on housing accessibility and aimed to evaluate the benefits of this project in terms of changed attitudes and acquired skills among its users. The evaluation consisted of two online questionnaires that participants were asked to complete prior to (pre-Q) anddirectly after (post-Q) the CS initiative.To address the overall aim of the thesis, a categorization matrix was used to analyse the thesis findings, which was largely based on a conceptual tool (Jönson et al. 2021) containing four considerations of user involvement (Why?; Who?; When?; How much?) developed within a Swedish research program dedicated to the study of user involvement in research on ageing and health. The analysis indicated a connection between willingness to be involved in research and higher levels of formal education among users; that mobile digital literacy is an important prerequisite for older people and people with disabilities to be involved in research involving mobile technology.The main benefits of user involvement in research as perceived by older people and other user groups were that it could lead to new insights into complex problems. However, it was found that user involvement does not always necessarily lead to benefits and there are indications that this has to do with the depth of involvement.Thus, conducting research with user involvement requires sensitivity towards the prerequisites of different user groups and insights into what possible benefits it is reasonable to expect from the user involvement. The adapted conceptual tool and the categorization made from it within this thesis, constitutes an attempt to systematicallyvalue user involvement. Namely, to what extent it has the potential to contribute to the development of generalizable knowledge and cumulative knowledge in research on ageing and health.