The Impact of Caregiving for Children with Epilepsy, Down Syndrome, and Muscular Dystrophy on Informal Caregivers

Abstract

Objective While caregivers of children with chronic conditions are known to experience lower quality of life compared to caregivers of healthy children, there is limited research examining the impact of caregiving for children with specific conditions. The objective of this study is to compare how different demographic and clinical characteristics affect caregiver quality of life indicators among caregivers of children with epilepsy, Down syndrome, and muscular dystrophy. Methods Secondary analyses using data from a cross-sectional study that surveyed a national sample of caregivers (n=699). Linear regression models with interaction were used to test the effects of child diagnosis on caregiver stress and caregiver benefit with different moderating variables (caregiver hours, condition severity, number of child comorbidities, and caregiver resilience). A logistic regression model was used to examine the association between child diagnosis and job status change, and a linear regression model was used to determine how job status change impacts the relationship between caregiver stress and anxiety and the relationship between caregiver stress and depression. Results Caregivers who experienced a job status change reported higher mean depression (p=<0.001) and anxiety (p=<0.001) scores. When controlling for condition severity, caregivers of children with epilepsy reported higher mean stress scores (p=<0.001) and were also more likely to experience a job status change (p=<0.001) in comparison to all other diagnostic groups. However, higher mean stress scores reported by caregivers of children with epilepsy were not associated with differences in dedicated weekly caregiver hours, number of child comorbidities, or caregiver resilience. Conclusions Job status change and condition severity provide some foundation for understanding differences in stress and benefit of caregiving experienced by caregivers. However, more research is needed to understand what drives the differences in caregiver experience between caregivers of children with epilepsy, Down syndrome, and muscular dystrophy.