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
Author notes
JM was responsible for study design, interpretation of results, and drafting of manuscript. SS and HD were responsible for data management, data analysis, and drafting of manuscript. MG and MAG were responsible for data management and drafting of manuscript. LK provided supervision and edited the manuscript.
Disclosure statement
No potential conflict of interest was reported by the authors.
Data availability statement
Data are available upon reasonable request to the authors.