Surfacing the Voices of People with Dementia: Strategies for Effective Inclusion of Proxy Stakeholders in Qualitative Research

Jiamin Dai, Karyn Moffatt
2021 Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems  
Best practices for conducting HCI research on dementia care increasingly involve multiple stakeholders and incorporate diverse viewpoints. When done effectively, involving proxy stakeholders such as family members and professionals can help bring forward the voices of people with dementia. However, concrete practical guidance for navigating the challenges of integrating different perspectives is lacking. We critically reflect on our own recent qualitative fieldwork involving participants with
more » ... mentia, family caregivers, and facilitators at a local social program for people with dementia, re-examining our interview transcripts and observation notes through content analysis. We illustrate practical approaches to prioritizing participants' voices through concrete excerpts that demonstrate strategies for better managing dynamics, intervening effectively, and engaging all stakeholders in the research process. Our reflections and proposed guidelines can benefit HCI researchers and practitioners working with vulnerable populations. We hope this work will spur further discussion and critique to strengthen and improve research practices in this domain. As research on designing for and with people with dementia has matured, the HCI community's framing of dementia has likewise evolved. People with dementia are increasingly recognized as competent, engaged, and capable of expression [42] , and the focus of research has shifted from mitigating the impacts of impairments to supporting the enjoyment of life [47] . Inclusive design practices have enabled researchers to build empathetic relationships with participants [24, 43, 46] and co-create technological solutions that prioritize dignity and respect [19] . Multiple stakeholders are commonly involved in designing assistive technologies to mitigate the social and communication challenges associated with dementia and enable researchers to uncover design requirements (e.g., [59] ). In this paper, we use the term "proxy" to refer to secondary stakeholders in HCI research. We acknowledge that "proxy" can carry legal meanings as an authorized representative, but our scope here encompasses other stakeholders (e.g., family members, practitioners, and domain experts) acting as surrogates to help primary stakeholders (e.g., people with dementia) express thoughts and opinions. Proxies can bring different strengths to research; for example, dyadic interviewing of care recipients and caregivers paints a rich picture of their lived experience, while the use of domain experts incorporates external
doi:10.1145/3411764.3445756 fatcat:p4sgdgh67navrmtu4tw7evhcyq