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.