Understanding haemophilia caregiver burden: does appraisal buffer the impact of haemophilia on caregivers over time?

Abstract

Objective: The present work investigated haemophilia caregiver and patient characteristics associated with change in negative and positive aspects of caregiving. Design: Web-based survey data were collected from haemophilia A or B caregivers at baseline and two years later. Main Outcome Measures: Outcomes included Burden Summary and Positive Emotions change scores from the Haemophilia Caregiver Impact measure. Results: The sample included 323 caregivers (71% response rate; mean age 40, 90% female). Brief Appraisal Inventory Principal Components Analysis with varimax rotation yielded five scores: Awareness of Challenges, Fulfillment and Growth, Stay Positive, Social Comparison, and Interpersonal Problem-Solving. Regression analyses revealed that caregivers with more health conditions, who care for patients with increased bleeds and worse pain, and who focused more on Awareness of Challenges, Social Comparisons, and Interpersonal Problem-Solving reported worsened burden over follow-up (Adj. R² = 0.37). Prioritisation of Stay[ing] Positive and reduced emphasis on Interpersonal Problem-Solving were associated with increased Positive Emotions (Adj. R² = 0.32). Conclusion: Caregivers who focused less on a life unfettered by caregiving, comparing themselves to others, and interpersonal problem-solving and more on staying positive reported reductions in burden and improvements in positive emotions. These findings could translate to multicomponent psychoeducational interventions to help caregivers buffer haemophilia’s impact.

Keywords:

• Haemophilia
• caregiver
• burden
• outcomes
• longitudinal
• appraisal

Acknowledgements

CES designed the research study. WM provided access to the sample. CES performed the research, CES, RBS and BDR analysed the data. CES wrote the paper and RBS, WM, and BDR edited the manuscript.

Disclosure statement

No potential conflict of interest was by the authors.

Additional information

Funding

Funding for data collection was provided by Bioverativ Therapeutics, a Sanofi Company; Swedish Orphan Biovitrum