Informed Consent or Assent Strategies for Research with Individuals with Deafblindness or Dual Sensory Impairment: A Scoping Review

Abstract Objective To synthesize evidence on existing informed consent/assent strategies and processes that enable the participation of individuals with deafblindness or dual sensory impairment in research. Data Sources Five scientific databases (PubMed, MEDLINE, CINAHL, Web of Science, and PsycINFO) and other sources such as Google Scholar, the Journal of Visual Impairment and Blindness, and the British Journal of Visual Impairment were hand-searched from January 2015 until July 2020. Study Selection Studies were selected using a priori inclusion criteria of sensory and cognitive disabilities and focused on consent/assent strategies and processes in research within this population. Articles related to the medical or sexual consent processes were excluded. Data Extraction An Excel spreadsheet was used to extract data from the eligible sources. Discrepancies were resolved in discussion with team members. Data Synthesis A total of 2163 sources were screened, of which 16 articles were included in the review. Seven sources only examined consent strategies, whereas the remaining eight included a combination of consent/assent and dissent strategies. Using thematic analysis, three key themes emerged – consent/assent strategies, researcher capacity, and capacity to consent tools. Key identified strategies included the accessibility of the consent/assent process, building relationships with participants and caregivers, identifying behavioural cues, and communication training for researchers. Conclusion Despite the absence of literature on consent/assent strategies within the deafblind population, the review found promising strategies applied to individuals with other cognitive or sensory disabilities that researchers can adopt. Researchers are encouraged to use best practices in creating an inclusive research environment to include individuals with deafblindness.