Listening before Asking: Lived-Experience Advisors as Methodological Partners in Dementia Caregiving Studies
arXiv:2601.19021v1 Announce Type: new Abstract: Research with dementia caregivers poses persistent methodological and ethical challenges, particularly when interview-based studies are designed without sufficient grounding in lived caregiving realities. Questions framed through clinical or deficit-oriented assumptions risk alienating participants, undermining rapport, and producing shallow or ethically fraught data. While human-computer interaction (HCI) research increasingly adopts participatory approaches in technology design, participation rarely extends to the design of research methods themselves. This paper examines the role of lived-experience advisors as […]