Labour of Love: A Sequential Exploratory Mixed-Methods Study on the Impact of Caring for a Child With Dravet Syndrome

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.