Caregiving in pediatric epilepsy: results of focus groups and implications for research and practice

The process of caring for youth with epilepsy (YWEs) has been understudied. Previous research has identified that caregivers of YWEs report increased parenting stress, unanticipated caregiving responsibilities, and negative effects on family life. Using the adapted Caregiving Process Model, perceptions of the caregiving process were explored in four focus groups of caregivers of youth with epilepsy diagnosed at <1 year, between 1 and 5 years, and >5 years. Thematic analysis guided the data analysis. The prevalent theme that emerged during the data analysis was navigating the noncontingencies (lack of a perceived relationship between action and outcome, unpredictability). This was supported by the subthemes, namely, blessings and sacrifices, uncertainty today and tomorrow, constant vigilance, and caregiving is more than parenting. The focus groups displayed similarities and differences in caregiving perceptions across the three postdiagnosis time periods, providing support for conceptualization of the caregiving as multifactorial, multidirectional, and fluid process. With this knowledge, epilepsy health-care professionals are encouraged to promote patient and family centeredness, provide information on how to access community resources, and work with caregivers to enhance epilepsy self-management skills.