Rommerskirch-Manietta, Mike
Manietta, Christina
Hoffmann, Anna Louisa
Rohra, Helga
Gove, Dianne
Alpers, Birgit
Hung, Lillian
Geary, Carol R.
Abbott, Katherine M.
Ren, Lily Haopu
Oberfeld, Stefanie
Diaz, Ana
Roes, Martina
Funding for this research was provided by:
Federal Ministry of Education and Research in Germany (01KG2213, 01KG2213, 01KG2213, 01KG2213, 01KG2213, 01KG2213, 01KG2213)
Article History
Received: 14 February 2023
Accepted: 29 June 2023
First Online: 11 July 2023
Declarations
:
: Based on different methodological papers about participatory research and co-research [CitationRef removed, CitationRef removed]. We consider all members of the research team as equal co-researchers of the DECIDE-SR study. Furthermore, the DECIDE-SR study is about the development of a concept on how to actively involve people living with dementia and those from their social network, and healthcare professionals, no data will be collected and therefore no ethical clearing is necessary. Involving people living with dementia as co-researchers and not needing ethical clearing is also emphasized by Alzheimer Europe [CitationRef removed] as well as by the European Working Group of People with Dementia (EWGPWD) [CitationRef removed]. By conducting an ethical clearing due to one identity characteristic (diagnose of dementia) of one person among all co-researchers would cause discrimination and stigmatization [CitationRef removed]. We are aware that there might be a knowledge gap concerning ethical dilemmas while including vulnerable groups (here people living with dementia and those from their social network) as co-researchers. To be aware and act accordingly is of particular importance when people are involved based on their lived experience with dementia. Within the DECIDE-SR study we can rely on a long-term relationship and will implement a sequence of reflecting of the active involvement in each meeting [CitationRef removed]. Members of the DECIDE-SR research team will either be financially compensated for attending the meetings (people living with dementia and those from their social network) or attending the meetings will count as work time (healthcare professionals). The co-researchers (people living with dementia and those from their social network) will be recruited through the DZNE Patient Advisory Board and thus have been in contact with the researchers for a long time and have already collaborated in previous projects. People living with dementia will sign a contract with the DZNE, due to their potential exposure of their disease when their name will be displayed while becoming a co-author. This contract is discussed in detail with the people so that they can make an informed decision. Additionally, there is the chance to participate in the project without a contract and participating anonymously as a co-author.
: Not applicable.
: The authors declare that they have no competing interests.