Research collaboration with older people as a matter of scientific quality and ethics: a focus group study with researchers in ageing and health

Abstract

Abstract Background Society is placing increasing demands on collaboration with actors outside the academia to be involved in the research process, and the responsibility for turning this into reality lies with the researchers. As research collaboration is a way to increase the societal relevance of research and since older people have the right to be actively involved in research that concerns them, this study is addressed to researchers who work with and for older people. The purpose of this article is to explore researchers’ experiences of research collaboration with the heterogeneous group of older people, from healthy to frail. Methods The focus group method was applied based on a qualitative approach that is based on a social constructivist research tradition. It differs from other qualitative methods, such as interviews, in that it encourages interaction between research participants and contributes to shedding light on a collective understanding of the world. A total of 14 researchers participated in four focus groups (three to five participants/group). Results The results provided support for the overall theme: “Good scientific quality and ethics are balanced against the needs and abilities of older people”. This means a balance between the researcher and the older people collaborating with them to receive the best possible scientific quality. This is highlighted in the core category “Positioning for research collaboration” with the subcategories “Involvement or not”, “Traditional or innovative thinking” and “Selectivity or representativeness”, and the core category “Research collaboration – an ethical issue of power” with the subcategories “Research collaboration a risk for freedom of research”, “Research collaboration a risk of abuse of power” and “Discriminatory academic power structures create ethical issues”. Conclusions Addressing the balancing act of collaborating with older people in research, the findings contribute with an understanding of the importance of researchers’ awareness of social and academic structures to minimise the risk of epistemic injustices in research on ageing and health. We want to highlight the researchers’ voice and clarify the role that researchers have in terms of the opportunities for older people to become part of the collective understanding of ageing and health and make their voices heard.