Abstracts

RATIONALE: Although many parents encounter stressors while raising a child with epilepsy, little is known about how parents are impacted by this experience. The objective of this investigation was to explore parents[ssquote] perceptions of the social, emotional, financial and spiritual impact that results from caring for a child with epilepsy.
METHODS: Participants were 25 parents (7 M; 18 F) whose child was admitted to a children[ssquote]s inpatient epilepsy unit for evaluation and treatment. Parents ranged in age from 25 to 48 years. Most participants who completed the questionnaire were married (n=18) including six married couples. The participants[ssquote] children with epilepsy (10 M; 9 F) ranged in age from 1 to 18 years (median=7 years). Time since seizure onset ranged from newly diagnosed to 15 years (median=4 years). The children experienced one to multiple seizure types. Seizure frequency ranged from one to hundreds per week. Children were treated with mono- or poly-anticonvulsant therapy. Parents were asked if they were willing to complete a survey that included checklists, open-ended and scaled score questions regarding family demographics, stressors, and the impact of caring for a child with epilepsy. Parents were excluded if medical staff reported that comprehension of the questionnaire may have been difficult due to language or cognitive abilities.
RESULTS: Many parents (48%) noted an increase in tension with their spouse/partner due to caring for their child with epilepsy, while 28% noted that their relationship had been strengthened. Similarly, 32% reported feeling a close relationship with their child; however, parents tended to treat their child with epilepsy differently (e.g., overprotective). Of those parents with additional children, 44% noted fewer opportunities to provide them time or attention. Relationships with extended family members were primarily described as supportive (52%), yet a majority of parents (84%) reported a marked change in their social life (e.g., less free time, spend most time with their family). Taking time off from work was the most frequently cited change noted by parents employed outside the home (57%). A majority of parents (60%) also noted a change in their family[ssquote]s financial circumstances due to expenses related to the child[ssquote]s care. 72% reported that caring for a child with epilepsy resulted in increased stress or symptoms of depression or anxiety; however, most parents (80%) described themselves as doing [dsquote]OK[dsquote] or able to cope with stress more effectively. Of those parents who noted a change in their spirituality, 57% stated their experiences had deepened their faith. When asked to describe the most stressful part about caring for their child with epilepsy, 44% noted the uncertainty associated with their child[scquote]s illness. Finally, 60% of parents reported feeling moderately overwhelmed with the care their child with epilepsy requires.
CONCLUSIONS: These results suggest that parents of children with epilepsy experience marked social, emotional, financial and spiritual changes as a result of caring for their child with epilepsy. Although these results are based on a limited number of participants and are considered preliminary, these findings have implications for the type of services these families may require. In addition, these results may help healthcare providers appreciate the experiences of families.