Self-advocates with Down syndrome research the lived experiences of COVID-19 lockdowns in Aotearoa New Zealand.
Franco Vaccarino, Zandra Vaccarino, Duncan Armstrong and 6 others
PMID 36458448WHAT IT FOUND
People with Down syndrome relied heavily on family for support and information during lockdowns, with most lacking professional assistance.
While isolation from friends caused distress, participants used technology like Zoom to stay connected and generally reported resilience and positive adaptation.
Key findings
01Most participants received no support from professional providers during lockdown, relying instead on family members.
02Inability to see friends was the most difficult aspect of lockdown, causing feelings of isolation and loneliness.
03The majority of participants used Zoom to maintain social connections and participate in activities, finding it easy to use.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The study did not include the perspectives of family members or support providers, limiting the understanding of the full support dynamic. The sample size was relatively small (40 participants), which may limit the generalisability of the findings to the broader population of people with Down syndrome. Participants were recruited through specific networks (Special Olympics, Down Syndrome Associations), which may introduce selection bias towards individuals who are already socially engaged or have active family support. The study was conducted in New Zealand, where lockdown policies and support systems may differ significantly from other countries.
Declared interests
The authors declared no conflict of interest. The research was funded by Massey University.
The easy way to misread this
Do not assume that the lack of professional support reported by participants indicates a failure of service provision in all contexts, nor that family support was sufficient for everyone. The study highlights a specific period in New Zealand where families absorbed the support burden, which may not reflect the experiences of those without strong family networks or in different healthcare systems.