Self‐advocates with Down syndrome research the lived experiences of COVID‐19 lockdowns in Aotearoa New Zealand

Abstract

Background Individuals with Down syndrome are particularly vulnerable to COVID‐19 because they are recognised as significantly immunocompromised. Yet their voices regarding their lived experiences of pandemic lockdowns have not been sought or heard. Aim This study aims to describe the lived experiences of people with Down syndrome during the pandemic lockdowns in Aotearoa New Zealand to add evidence in order to inform systemic advocacy. Method A mixed‐methods approach positioned within an inclusive research paradigm was used, in which a group of self‐advocates with Down syndrome co‐designed a structured interview schedule and conducted 40 face‐to‐face interviews. Key themes were identified by using content analysis. Results Despite the difficulties associated with lockdowns and participants not receiving their usual supports and having to make significant adjustments, they remained positive, adapted well, and demonstrated a high level of resilience and adaptability. Conclusions The findings add to the limited research on the lived experiences of people with Down syndrome during pandemic lockdowns. This research has given them a voice to contribute to policy, government initiatives, and service providers; particularly on issues around support during lockdown and staying connected with others.

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

“…For example, several participants’ exploration of remote work opportunities appears to have been driven by day program closures, or the limitations of remote day‐time services. Further, although persons with ID have reported the limitations of using technology to maintain social relationships (Puyaltó et al, 2022), we found that several participants were empowered by technology to access remote work opportunities, consistent with findings by Spassiani et al (2023) and Vaccarino et al (2023) regarding social activities. Further, while the literature has largely correlated service disruptions with negative outcomes (e.g., Lunsky et al, 2022), we found that disruptions in pre‐existing, under‐inclusive adult disability service models prompted group home residents with ID to seek competitive employment or more independent living arrangements.…”

“…Participants also demonstrated resilience by making positive changes amid pandemic-related challenges. Participants' feelings of isolation echo those reported by persons with ID not living in group homes (Vaccarino et al, 2023;Lake et al, 2021;Kim et al, 2021;Embregts et al, 2022), but appear to be exacerbated by group home residents' unique experiences of frequent lockdowns and staffingrelated community access limitations, as found by Puyalt o et al ( 2022). However, such feelings have not previously been linked to the disproportionate effects of these restrictions on group home residents with mobility impairments, which may parallel the compounded effects of restrictions faced by persons with both ID and visual impairments found by Honingh et al (2021).…”

“…Nor has previous research explored how group home residents with ID may not have received potentially critical information about the increased risk of COVID‐19 transmission in group settings, or the ethics of providers' selective non‐disclosures. Finally, although the literature has detected examples of resilience among persons with ID coping with pandemic challenges (e.g., Vaccarino et al, 2023; Kim et al, 2021; Lake et al, 2021), it has not fully captured how some group home residents have also demonstrated resilience in arguably more trying contexts.…”

“…Both Honingh et al (2021) and Puyaltó et al (2022) suggest that persons with ID living in group settings faced unique barriers to accessing their communities and sources of support. Other inclusive studies of persons with ID, however, do not specifically address how many participants lived in group settings (e.g., Spassiani et al, 2023; Vaccarino et al, 2023), while other studies of group home residents with ID did not use inclusive methods (e.g., Embregts et al, 2022). Thus, the general absence of researchers with ID on this topic raises questions about whether the broader literature reflects their perspectives and priorities and whether aspects of their experiences remain underexplored.…”