Research as an essentiality beyond one\u2019s own competence: an interview study on frail older people's view of research

Maria Haak,Emmelie Barenfeld,Isak Berge,Qarin Lood,Synneve Ivanoff

doi:10.1186/s40900-021-00333-7

Abstract

BackgroundThere is an increased interest to make the voices of frail older people heard in research by actively involving them in research processes. Involving frail older people in research could, however, be perceived as challenging by researchers. To actively involve frail older people in research processes in a meaningful way, the knowledge about their own views on what research is must be widened and deepened.MethodsIndividual interviews were conducted with 17 frail older men and women with former experience of participation in research studies. Qualitative data were analysed using content analysis.ResultsFrail older people’s views on what research means are described through the main category; An essentiality beyond one’s own competence, which describes research as a complex process that is important for society but difficult to understand. This is described in the sub-categories; A driving force for societal development, A benefit when based on lived experience, A source of knowledge difficult to access and understand, and A respected job filled with responsibilities.ConclusionDifferent views on research from the perspective of frail older people show that research is viewed as a complex yet important phenomenon to frail older people. Research was also seen as a natural part in society. Research was viewed as difficult to access and understand. Thus, researchers must train themselves to communicate research findings to the public in an understandable way. To create common understandings through information and education, researchers might be better placed to involve frail older people in a meaningful way and thereby also have the possibility to develop good working practice and relationships with those involved.

Highlights

Patient and public involvement in research has been described as a way to increase the benefits and relevance of research findings to different target groups
The analysis resulted in one category and four sub-categories, describing the participants’ views on research as an essentiality beyond one’s competence, defined as: A driving force for societal development, A benefit when based on lived experiences, A source of knowledge difficult to access and understand, and A respected job filled with responsibilities (Fig. 1)
In the category A benefit when based on lived experiences it was emphasised that for research to be beneficial for frail older people, research should be related to challenges faced by them as a group

Summary

Introduction

Patient and public involvement in research has been described as a way to increase the benefits and relevance of research findings to different target groups. Frailty is commonly defined as living with an ageing, physically and physiologically declining body, which influences both stamina and endurance often measured by exhaustion, weakness, slowness, low physical activity and unintentional weight alongside morbidity and dependence in daily activities [4, 5]. Such declining functions have previously been used as exclusion criteria in research, and frail older people have generally been considered as sources of data, rather than as partners with valuable knowledge [6]. To actively involve frail older people in research processes in a meaningful way, the knowledge about their own views on what research is must be widened and deepened

Objectives

Discussion

Conclusion