Professional and Family Carers’ Perspectives on the COVID-19 Pandemic and Its Impact on Supported Decision-Making with Adults with Intellectual Disabilities: A Qualitative Online Survey

Abstract

Background: COVID-19 restrictions in Ireland varied in levels of severity throughout 2020 and 2021. The aim of the present study was to explore the experiences of professional and family carers in supporting people with intellectual disabilities to make their own decisions during these restrictions. Methods: Participants recruited between July and December 2021 via social media, disability services, and academic experts completed a qualitative online survey. Results were analysed using reflexive thematic analysis. Results: Data from 16 participants (eight professional carers, eight family carers) were included. Three main themes were identified: 1. centring the person, 2. adapting to COVID, and 3. restricted lives. Anxiety, confusion, and boredom among adults with intellectual disabilities during restrictions were reported by both professional and familial carers. Professional carers reported some positive outcomes, including greater chances for independence among service users and new activities becoming available via online resources. Family carers reported more negative outcomes, including isolation from disability services. Conclusions: People with intellectual disabilities had their choices markedly curtailed during the restrictions. Future studies should focus on improving the ability of services to reach users who may not have the ability to attend services in person.

Keywords

• intellectual disability
• supported decision-making
• COVID-19
• self-determination