Methodological Approaches to Obtaining Informed Consent when Conducting Research With Individuals With Deafblindness

Abstract

Informed consent is essential in research involving people with disabilities to protect their rights and ensure ethical conduct. Individuals with communicative vulnerability, such as those living with deafblindness, face difficulties when the research process is not accessible. Our team has developed methodological expertise where this vulnerable population is concerned. To formalize recommendations that can improve their inclusion, we utilized an observational, retrospective design to address three questions: What are procedures that facilitate recruitment in a lab specializing on working with individuals living with deafblindness? What are optimal procedural adaptations to obtaining informed consent? and What training can best prepare researchers working with individuals living with deafblindness? First, we conducted a textual narrative synthesis of our eight most recent protocols and procedures that required in-person interaction with adults living with deafblindness. Second, we conducted semi-structured discussions among our team members, and third, we engaged in a validation procedure of the synthesized recommendations with our external partners. Procedural adaptations require flexibility in all aspects of recruitment and consent to accommodate communication needs. These include additional time, and accessible formats. Adaptations should consider vision (e.g., large-print, braille) and hearing (e.g., sign language, communication strategies) as well as aspects unique to deafblindness (e.g., intervener support, tactile communication). Consent can be documented in hand-written, electronic, audio or video-recorded format, and may be facilitated by third parties. Team training should include proficiency in plain language, basic knowledge about deafblindness, and awareness of accessibility features for mainstream devices. We present simple steps that can improve inclusion and increase accessibility for participants living with deafblindness, and that can improve the capacity of the research team by developing flexibility, patience, respect, and trust. This information can further inform institutional ethics review boards that are unfamiliar with the logistics of obtaining informed consent when working with participants living with deafblindness.