Vulnerable but stronger together: An interpretative phenomenological analysis of the experiences of mothers of young adults with profound intellectual and multiple disabilities during the COVID-19 pandemic

ABSTRACT

Background

Mothers of young adults with profound intellectual and multiple disabilities that live at home are less likely to be on the radar of formal services. We explored the experience of these mothers over the course of the COVID-19 pandemic.

Methods

A qualitative study using three case studies. Transcripts were analysed using Interpretative Phenomenological Analysis.

Results

Two overarching themes with various subthemes emerged. The first theme focuses on the impact of being a mother of a young adult with profound intellectual and multiple disabilities who lives at home during the COVID-19 pandemic. The second theme describes both the vulnerability and resilience of the broader system, as well as its need to experience togetherness.

Conclusions

Families of a young adult with profound intellectual and multiple disabilities exhibit both resilience and vulnerability during the COVID-19 pandemic, underscoring the importance to support and promote the visibility of these families.

KEYWORDS:

• Profound intellectual and multiple disabilities
• mothers
• COVID-19
• interpretative phenomenological analysis

Acknowledgements

The authors would like to thank the mothers who participated in this study.

Disclosure statement

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

Additional information

Funding

This research was funded by ZonMw: The Netherlands Organisation for Health Research and Development (grant number: 641001105).