Exploring carers' views and experiences of being involved in research and development work

Abstract

This article aims to move knowledge beyond the first response, by outlining a framework for interpreting and evaluating the experiences of carers regarding their involvement in R&D work. The study adopted a descriptive and explorative qualitative design. The inclusion criterion to enroll in the study was being a career and having participated in an FGI in the ICS consultation phase. The sample of twelve participants ranged in age from 35 to 77 years (mean value 60 years). Data collection consisted of individual interviews, via the “Zoom” videoconference system, telephone or face-to-face, depending on the preferences of the participants. Face-to-face interviews were conducted at the university or a café. The result is participants emphasized the significance of lived experience and practical knowledge. There is a limited amount of systematic research carried out that also actively takes into account possible negative experiences, barriers, and issues.

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