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

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.

Society is increasingly expecting researchers to involve people who are not researchers in their research. To understand how such collaboration could become a reality, this study aimed to explore researchers’ experiences of collaborating with older people in research on ageing and health. A total of four focus groups consisting of 14 researchers from two universities were conducted to discuss experiences, approaches, opportunities and obstacles for research collaboration with older people. The results revealed an overarching theme that describes research collaboration as a balancing act with scientific quality and ethics on one side, and the needs and abilities of older people on the other side. This means that researchers need to strike a balance between achieving the highest scientific quality and considering the needs and abilities of older people they are collaborating with. To understand how unethical, it is to not involve older people in research, the concept epistemic injustice has been used. It refers to the systematic exclusion of certain groups from knowledge production and dissemination which can lead to the exploitation of vulnerable populations and the perpetuation of harmful stereotypes. In addressing the challenges of collaborating with older people in research, this study emphasises the importance of researchers being aware of both social and academic structures that might affect whose voices are heard in research. This awareness could help researchers clarify their role in giving older people the opportunity to be part of the collective understanding of ageing and health.

Informations de copyright

© 2024. The Author(s).