Abstracts

Rationale: Caring for a child with Epileptic Encephalopathy (EE) can be stressful and very challenging. At the same time, many caregivers report that they experience rewards and benefits from caregiving. Caregiver benefit has not been well studied. This study examined caregiver benefit and associated factors in individuals caring for children or youth with EE. Methods: Caregivers of children with an EE (N=128) responded to a self-reported online questionnaire including UW Caregiver Benefit and Stress scales, PROMIS-29 Profile (fatigue, anxiety, depression, sleep disturbance, physical function, social roles participation), PROMIS global health (physical, mental), and the UW resilience scale. The mean of 50 for all scales represents the mean of a US community sample. Pearson correlations, univariate linear regression analyses and Students T-tests examined relationships between perceived benefits and health, as well as benefit by income, education and gender. Results: Caregivers of children with EE (N=128) reported significantly less benefit (M:46) than the caregivers in the community sample (M:50), and men (n=7) reported significantly less benefit (M:37) than women (M:47). The highest ranked benefits were becoming a better advocate for their child/children, appreciating what is important in life, being more accepting, and putting life into perspective. More benefit was associated with less fatigue and depression, and better mental health and resilience. Caregivers with more education reported less benefit (M:42) than those with less education (M:48). Caregiver benefit was not significantly related to caregiver stress, physical health, anxiety, sleep disturbance, participation in social roles, and physical function, and had a non-linear relationship with the age of child or duration of EE, though those with children 12 years or older or who had EE for 10 years or longer reported the most benefit. Conclusions: The significant associations between caregiver benefit and perceived fatigue, depression, mental health, and resilience suggest that positive psychology interventions that could help caregivers identify, focus on, and generally become more aware of the benefits derived from caregiving may result in improvements in these quality of life domains. Research to evaluate this possibility is warranted. Funding: Research reported in this abstract was supported by a grant awarded to the University of Washington by Zogenix, Inc., under contract #ZXIIS2015-005.