COVID-19 pandemic experiences of group home residents with intellectual disabilities: Findings from inclusive, qualitative interviews with self-advocates in Massachusetts

Abstract

Little research on the experiences of persons with intellectual disabilities (ID) during the COVID-19 pandemic has been done by persons with ID themselves. Moreover, little research focuses on group home residents with ID, despite the greater risks they faced of COVID-19 transmission and mortality. To address these gaps, researchers with and without ID organized qualitative interviews and a focus group discussion with six group home residents with ID in Massachusetts. Study participants identified as self-advocates and reported feelings of frustration and isolation that at times were exacerbated by community access restrictions imposed by their group homes. All participants described group home staff efforts to keep them physically safe, while some reported lapses that contributed to their risk of contracting COVID-19. None described comparable efforts to address their social and mental health needs. All participants received information about COVID-19 and related precautions from group home staff, but none reported receiving information about heightened risks of contracting COVID-19 while living in group settings. Also, notwithstanding pandemic-related challenges, most participants identified at least one positive change in their lives, either by changing where they lived or worked or by forging new relationships. Participants' perspectives, as presented to researchers with ID, shed unique light on the range of group home residents' pandemic experiences, signal opportunities for interventions addressing social isolation, and underscore the efficacy of inclusive research methods in eliciting information from research participants with ID.