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Disclosure of individual‐specific results to participants of a dementia prevalence study: A qualitative study
Author(s) -
Fadda Marta,
Fiordelli Maddalena,
Amati Rebecca,
Ibnidris Aliaa,
Albanese Emiliano
Publication year - 2020
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1002/alz.043572
Subject(s) - dementia , qualitative research , thematic analysis , feeling , epidemiology , psychology , informed consent , medicine , gerontology , social psychology , alternative medicine , disease , sociology , social science , pathology
Background Dementia research and innovation is action area 7 of the WHO Global action plan on the public health response to dementia. Effective progress in this area depends on the promotion of participation in research both for people with and for those without dementia. However, evidence suggests that current research ethics policies and norms take participants’ preferences in little account, and may hinder equitable opportunities to take part in epidemiological research. Before conducting an epidemiological study into dementia and its impact, whose primary outcome is prevalence of dementia based on a probabilistic dementia diagnosis, we conducted a qualitative study to explore participants’ understanding of the meaning of individual‐specific results and on their preferences regarding their return. Method Between July 2019 and January 2020, we conducted interviews with individuals who participated in the validation phase of an epidemiological study (N = 22). Participants were 65 years old or older and resident in the Italian‐speaking part of Switzerland. We elicited information on their participation experience in the validation study, their reasons for participation (including expectations and potential barriers), their opinion on the return of research results, their understanding of these results. We also explored the communication preferences and the personal justification in favor or against the and the anticipated feelings with respect to the return of results. Finally, we discussed their preferences regarding the provision of informed consent for the return of study results. All interviews were recorded, transcribed and analyzed using thematic analysis techniques. Result Most participants reported that researchers have a duty to share individual‐specific results with participants if requested to, and that these results must meet certain validity and reliability criteria. The main reasons in support for the return include the desire to know/ exclude oneself dementia diagnosis, and the need to establish a relationship of mutual trust between researchers and participants. Conclusion In the context of an epidemiological study on dementia, researchers should demonstrate the validity of individual results (including dementia diagnosis) and offer in advance to participants the opportunity to receive this information accounting for their preferences and values.