Peer-reviewed article
Labour of Love: A Sequential Exploratory Mixed-Methods Study on the Impact of Caring for a Child With Dravet Syndrome.
Postma A, Milota M, Jongmans MJ, Brilstra EH, Zinkstok JR ·
Summary
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Abstract
Background Dravet syndrome (DS) is a rare genetic epilepsy syndrome, characterized by refractory seizures, delayed development, intellectual disability and behavioural difficulties. Caring for a child with DS can negatively affect parents' mental well-being. Therefore, this study aimed to (1) explore experiences of parents caring for a child with DS; and (2) assess distress and empowerment in these parents and the interplay between these aspects. Methods We used a sequential exploratory mixed-method design. We conducted focus groups with parents of children/adults with DS, analysed these data through iterative coding to identify themes and used the Distress Thermometer for parents (DT-P) and the Dutch Family Empowerment Scale (FES) for quantitative measures. Results were validated in a final focus group. Results Twenty parents participated in focus groups and 65 completed questionnaires. Four themes emerged: handling the unpredictable behaviour of a child with DS, attending to one's mental health needs and well-being, adjusting life and accepting changes to meet the child's needs and struggles navigating the (health)care system. Quantitative analyses showed a significant correlation between higher parental empowerment and lower distress, and more behavioural difficulties in their child with DS and higher parental distress. Conclusions Parental distress is high, especially for those parenting a child with DS and behavioural difficulties. Effective management of these issues and enhancing empowerment can improve overall family well-being.