Telemedicine Experiences of Adults with Intellectual and/or Developmental Disabilities During the COVID-19 Pandemic: Lessons for Future Accessibility

Abstract

Background: Telemedicine has experienced dramatic increases in availability and use, particularly during the COVID-19 pandemic. However, it is largely unknown whether adults with intellectual and/or developmental disabilities (AIDD) can utilize telemedicine and have access to high-quality telemedicine care. Few studies have asked AIDD about their experiences with telemedicine. Existing studies have primarily focused on specialty care for IDD diagnoses, pediatric populations, or care in non-US settings.

Objective: Characterize the experiences of AIDD with telemedicine using a community-based participatory research (CBPR) approach.

Design: A Community Advisory Board of AIDD and non-AIDD co-designed the study and focus group guide. Six virtual focus groups were conducted, four with AIDD and two with caregivers of AIDD (CAIDD), to solicit their experiences with and perspectives about telemedicine during the COVID-19 pandemic.

Participants: Twenty-one AIDD and 13 CAIDD, recruited through community organizations and snowball sampling.

Approach/main measures: Content analysis of focus group transcripts using consensus coding amongst three coders.

Key results: Most AIDD in the study had participated in telemedicine. Positive experiences/benefits included (1) convenience and privacy; (2) minimizing IDD-specific in-person challenges; and (3) reducing COVID-19 risks and facilitating triage. Negative experiences and challenges included (1) IDD-specific communication challenges; (2) concerns about the need for "hands-on stuff"; and (3) challenges with technology access and abilities. Participants had mixed experiences with tele-mental healthcare. Some worried about challenges arising from a post-pandemic return to in-person care for AIDD.

Conclusions: Participants found telemedicine beneficial, specifically in ways that mitigate existing barriers AIDD experience accessing and managing healthcare visits. While some of these benefits also exist for non-AIDD populations, they have specific potential to reduce health disparities for AIDD, even outside of a pandemic context. CBPR approaches centering AIDD voices are needed to validate and extend these results and to develop and test solutions.

Keywords: COVID-19; community-based participatory research; intellectual and/or developmental disability; telemedicine.