Parents with intellectual disability reporting on factors affecting their caregiving in the wake of the COVID-19 pandemic: A qualitative study

Abstract

Background: Parents with intellectual disability are vulnerable to parenting stress and overwhelming life events. The COVID-19 pandemic constitutes a potentially overwhelming event, but there is little knowledge concerning the effects on parents' caregiving. The present study aimed to fill this gap. Method: Semi-structured interviews with 10 Swedish parents with intellectual disability were analysed using thematic analysis. Results: One broad caregiving-related theme: increased caregiving demands and reduced resources for coping resulting in strained parent–child interactions and relationships. Four subthemes highlighted influential factors: pandemic information, professional support, social relationships and informal support, and children's school activities. Strained parent–child interactions were particularly common in the absence of adapted pandemic information, if professional and informal support were compromised, and if the parents had dealt with school-related changes. Conclusions: Findings support contextual models of caregiving and a stress-resources perspective, and emphasise the importance of adapted information and support to parents with intellectual disability during crises.