DataSheet1_Perspectives on advance research directives from individuals with mild cognitive impairment and family members: a qualitative interview study.docx

BackgroundAdvance research directives (ARDs) provide a promising way to involve individuals with mild cognitive impairment (MCI) in research decisions before they lose the capacity to consent. At the same time, the views of people with MCI on ARDs are underexplored. This study assesses the perceptions of people with MCI and family members on the benefits and challenges associated with ARDs.
AimsThe aim of this study was to investigate the perspectives of individuals with MCI and family members of individuals with MCI on ARDs. We focus specifically on willingness to participate in nontherapeutic research, understanding of ARDs and the ethical considerations involved.
MethodsThirteen open-ended, face-to-face interviews were conducted using a semi-structured format. Seven interviews were conducted with individuals with MCI, and six with family members of individuals with MCI. The narratives were transcribed verbatim and qualitative content analysis was carried out.
ResultsResearch participation and ARDs were viewed positively, largely based on altruistic motives and the desire to contribute to society. The participants recognized the potential advantages of ARDs in reducing the decision-making burden on family members and maintaining personal autonomy. They also highlighted challenges in comprehending ARDs and navigating the complexities surrounding potential conflicts between current preferences versus preferences described in an ARD.
ConclusionsARDs were predominantly seen as valuable instruments that enable individuals with MCI to participate in research. This study provides insights into the reasons why affected individuals are interested in drafting ARDs. These insights can guide the development of supportive interventions that are tailored to assist individuals with MCI and their families in navigating ARD processes.