Caring for a child with Dravet syndrome (DS) impacts the physical and emotional health of parents, according to a new study published in the journal Epilepsy & Behavior Reports. It also negatively affects their social relationships and causes an overwhelming financial burden.
“These results highlight the need for new psychosocial treatment, prevention tools, and policies to financially assist caregivers,” the authors concluded.
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The team used the Childhood Rare Epilepsy Social Impact Assessment (CRESIA) to analyze 96 Spanish adults who were parents of minors with and without DS.
The results showed critical differences in most of the explored areas, including social, health, psychological, family, stressors caused by the child, and economic, between parents caring for a child with DS and those caring for a child developing normotypically.
The highest impact was seen in the social domain, with results showing that caring for a child with DS leads to interpersonal relationship problems and social stigma.
This was followed by the general health of families, which was mainly affected by the high physical burden and fatigue caused by caring for a child with DS.
A significant impact was also seen in the psychological domain, the disease directly affecting caregivers’ emotional state, with caregivers experiencing high levels of stress, anxiety, worry, and hopelessness and low levels of meaning in life, self concept, and personal growth.
The child’s emotional, behavioral, and biological reactions, such as disruptive behaviors, basic needs, sleeping or feeding difficulties, and sporadic seizures, also had a high impact on the caregivers, causing prolonged stress with caregivers reporting feelings of loneliness and receiving little help and support from their immediate family.
Finally, caring for a child with DS had a large economic burden, with direct and indirect expenses averaging around 28,000 euros per year, which can be unsurmountable for some families.
Salom R, Aras LM, Piñero J, Duñabeitia JA. The psychosocial impact of caring for children with Dravet Syndrome. EBR. Published online August 25, 2023. doi:10.1016/j.ebr.2023.100619