Abstract
Purpose :
Multiple access barriers exist for persons with deafblindness that want to participate in research. The process of informed written consent is not easily accessible for persons with deafblindness, and its administration is often regulated by institutional review boards that have little or no experience accommodating this process. The purpose of this study was to explore alternative and adapted formats for the administration of informed consent/assent in research with older adults living with reduced or absent functional vision and hearing.
Methods :
Within the context of a larger project on deafblindness and health service access during the COVID-19 pandemic, we recruited 32 persons (Age 59 to 91, M = 77) with deafblindness, through rehabilitation centres in Canada. The research assistant systematically tracked communication formats and accessibility requirements and coordinated with the rehabilitation centres to adjust the consent process according to the requirements and preferences of each participant. He took systematic field notes and compiled all adaptations, which were later analyzed using qualitative description.
Results :
We converted our approved consent text into free-format electronic versions or paper-format without logos, line boxes, or bullet points, to facilitate easy access through scanners or screen readers. For participants who communicated through interpreters, we adapted the process to make interpretation into sign language easier. Verbal consent could be recorded for individuals where paper signatures posed a barrier. For the administration of demographic questionnaires, we eliminated check boxes and accepted verbal or signed response formats that could be more easily recorded. The main outcome of these adaptations was to allow our research participants with deafblindness to access and complete their informed consent process as independently as possible. Not only did these adaptations protect confidentiality and dignity, but their implementation facilitated the subsequent qualitative interviews in the most autonomous way possible.
Conclusions :
These adaptations contributed to the experience of our participants and increased the capacity of our team by developing skills centered around flexibility, patience, respect and trust. This improved communication and empathy, while facilitating equity, diversity and inclusion in research through accessibility.
This abstract was presented at the 2023 ARVO Annual Meeting, held in New Orleans, LA, April 23-27, 2023.