Behind the Scenes of Participation: Ethical Reflections on Power Dynamics in Co-Designing a VR Program in Long-Term Care

Introduction Participatory research (PR) has been found to have a positive impact on people living in long-term care (LTC). Yet, limited attention has been paid to the ethical complexities that are encountered in the research process. Our paper offers a reflexive account of the ethical issues related to power dynamics in a PR study involving the co-design of a virtual reality (VR) program in LTC. Method This reflection is part of a larger study to co-design a VR program in LTC settings. Our interdisciplinary team consists of an older adult with dementia, students and researchers in nursing, rehabilitation science, social work, computer science and engineering. We critically reflect on PR processes: co-design workshops, residents-led co-creation of videos, and staff-led VR implementation. We discussed the power dynamics faced, the methodological insights and lessons learned. A thematic analysis was conducted based on data drawn from fieldnotes, reflective memos, and team meeting discussions to identify recurring patterns related to power dynamics and participation. Results We identified the following themes: 1) the unintentional exclusion of residents’ voices in co-creation, 2) perceived autonomy and different levels of knowledge regarding VR technology, and 3) unfamiliarity with the research team and process. Conclusions Our results underscore the fragility of inclusive engagement in PR. We summarized the lessons learned with the acronym - PARTNER to guide future PR and projects co-designing and implementing technological interventions in LTC to promote more inclusive participation. We argue that genuine participatory practice requires ongoing reflexivity on power dynamics, attention to structural constraints, and care for relational dynamics in LTC settings.