Negotiating Research Participant Consent With, for and by Adults With Developmental Disabilities in Interaction With Their Third-Party Consent Providers

Abstract

We illuminate third-party research participant consent with, for, and by adults with developmental disabilities by examining consent as an iterative, ongoing process. We use an instrumental case study of three adults with developmental disabilities who, together with their third-party consent providing parents, participated in a broader conversation and video analysis study of how family members are part of decision-making by adults with developmental disabilities. Adults with developmental disabilities comprising our case demonstrated discomfort that left us with questions about the relational nature of third-party consent. We performed a directed content analysis of transcripts and video data corresponding to moments of discomfort, resulting in categories of one- distress, two- non-disclosure, and three- evasion. Our findings illustrate ambiguities where consent was at stake and where there appeared to be no ultimate “Yes” or “No” interpretation. We conclude that expressions of resistance to research participation by adults with developmental disabilities displayed in our data were assertions of autonomy that occurred in relation, yet ran counter to, the agendas of researchers and third-party consent providing parents. We offer recommendations for researchers in the developmental disability field and for qualitative researchers more broadly who might encounter similar ambiguities amidst the relational workings of consent. Greater analytic attention to the relational dynamics of consent has potential to expand ethical commitments of qualitative researchers beyond the limited range of meanings offered in ethics board approvals and signed consent forms.

Voice, disability and ‘end of life’ research: Strategies for including people with intellectual disabilities in qualitative research related to death and dying

“…Researchers may need to create multiple consent forms to accommodate varying levels of severity of impairments of participants (Stalker, 1998) or consent forms for accompanying supporters (Diaz, Bickenbach, & Angus, 2023). Researchers could seek informed consent through proxies who know the participant with intellectual disabilities well (Nind, 2008), but must keep in mind that those with severe or profound intellectual disabilities may assert their autonomy through non-verbal cues (Boettcher et al, 2022), leaving it up to the researcher to get to know participants well in order to learn how they communicate and express when they are uncomfortable or in distress (Mietola et al, 2017). When the project is inclusive and there are members of the research team with intellectual disabilities, there must be enough resources and time to facilitate training and the research process (Beail & Williams, 2014).…”