Stress, coping, and positive aspects of caregiving among caregivers of children with rare disease

Abstract

Objective Caregivers of children with rare diseases often consider caregiving to be a rewarding experience, despite high levels of burden. The present study examined associations between caregiver stress and positive aspects of caregiving (PAC); investigated associations between interpersonal coping strategies and PAC; and determined whether coping strategies moderated associations between stressors and PAC. Design Survey data came from a study on caregivers across different caregiving conditions, including caregivers of children diagnosed with inherited metabolic conditions (n = 167), undiagnosed diseases (n = 23), and caregivers of typically-developing children (n = 74). Main outcome measures Positive Aspects of Caregiving (PAC) scale. Results Results from generalized linear models indicated that perceived burden was not associated with PAC. Venting was negatively associated with PAC (b= −0.09, p=.03), whereas emotional support was associated with increased PAC for caregivers of children with undiagnosed conditions (b = 0.15, p=.02). Care needs were associated with greater PAC among caregivers engaged in high levels of emotional support coping (b = 0.10, p=.01) and venting (b = 0.09, p=.03). Conclusion These findings illuminate important differences in PAC based on the caregiving condition, and aspects of the caregiver stress process model that might be universal to caregivers. Results inform stress process theory and highlight the potential of support-based interventions for promoting PAC. Supplemental data for this article is available online at