‘They didn’t trust us to follow the rules’ – a qualitative study of how Irish adults with mild and moderate intellectual disabilities experienced the COVID-19 pandemic

Abstract

Objectives

Research documenting the self-reported impact of COVID-19 on people with intellectual disabilities has typically focused on the experiences of people with mild intellectual disabilities living in community settings. This study aimed to explore a broader perspective by examining the lived experiences of Irish adults with mild and moderate intellectual disabilities living in both community and congregated settings during COVID-19.

Methods

Twenty-six adults with intellectual disabilities, of whom 20 lived in community settings, were interviewed in-person using easy read materials. Interviews were thematically analysed using Template Analysis.

Results

Five key themes were generated: (1) participants’ emotional response and the impact on relationships and mental and physical health; (2) reduced community access, changed services, and uncertainty; (3) loss of autonomy, greater restrictions, and unequal treatment; (4) self-reflection and reappraising the future through the lens of COVID-19; and (5) pandemic-generated opportunities, skills development, and resources for coping.

Conclusions

Despite reference to some opportunities for growth and positive changes in routine, participants predominantly highlighted the negative impact of the pandemic on their emotional lives, relationships and sense of assurance of future stability in necessary supports. Participants’ experiences illustrate how the pandemic exposed the fragility of hard-fought advances in autonomy and self-determination. Greater vigilance is needed to protect a rights-based approach to support during times of emergency.

Keywords:

• Intellectual disabilities
• COVID-19
• pandemic
• qualitative research
• experience
• living arrangements

Acknowledgements

The authors would like to acknowledge all the participants and their support staff who engaged in this research project during a particularly difficult period and Dr. Frances King, Health Service Executive, who inputted into participant information documentation.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The participants of this study did not give written consent for their data to be shared publicly. Participants consented to the sharing of their anonymised data with other researchers by request to the lead author.