Abstract

Background: Since the psychosocial implications of Dravet syndrome (DS) are much more serious and far-reaching than in other types of epilepsy, caring for a DS child seriously affects the entire family. This study describes the emotional experiences of family caregivers of DS children and evaluates the way caregiving affects their perceived quality of life.

Methods: An anonymous, self-administered online questionnaire was sent to family caregivers of DS children through the online patient advocacy organisation the Association for People with Severe Refractory Epilepsy DRAVET.PL. It focussed on the psychosocial impact of caregiving for DS children, the perceived burden of caregiving, caregivers’ emotional experiences and feelings related to caregiving and the impact of DS on the perceived quality of life.

Results: Caregivers stressed that caring for a DS child is associated with a significant psychosocial and emotional burden that affects the entire family. Although most caregivers reported that it was the child’s health problems and behavioural and psychological disorders that were the most challenging aspects of caregiving, they were also burdened by the lack of emotional support. As caregivers were profoundly engaged in caregiving, they experienced a variety of distressing emotions, including feelings of helplessness, anxiety and fear, anticipated grief, depression and impulsivity. Many caregivers also reported that their children’s disease disrupted their relationships with their spouses, family and healthy children. As caregivers reported experiencing role overload, physical fatigue and mental exhaustion, they stressed the extent to which caregiving for DS children impaired their quality of life, their social and professional life, and was a source of financial burden.

Conclusions: As this study identified specific burden domains affecting DS caregivers’ well-being family carers often need special attention, support and help. In order to alleviate the humanistic burden of DS carers a bio-psychosocial approach focusing on physical, mental, and psychosocial interventions should include both DS children and their caregivers.

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