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

Keywords:

• Caregiving
• positive aspects of caregiving
• caregiver burden
• coping
• rare disease

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.

Additional information

Funding

This research was supported by funding from the Intramural Research Program of the National Human Genome Research Institute (Grant ZIAHG20335).