Appraising Haemophilia Caregivers Burden in the Resource-limited Setting: A Nigerian Survey

Abstract

Background: Inadequate management of haemophilia in a resource-limited setting may worsen the challenges that haemophilia caregivers face. AIM: The aim of the study was to evaluate the effect of the burden of caring for persons with haemophilia (PWH) on the quality of life of the caregivers. Methods: This was a cross-sectional national survey carried out among caregivers of PWH. A modified CarerQol-7D Questionnaire was distributed to consenting families with PWH. The association between clinicopathological characteristics of care recipients and these outcome variables was calculated by SPSS version 22. Results: One hundred and five families participated. The majority of the caregivers were immediate family members (101, 96.2%) and mothers (75, 71.4%) of patients. Caregivers were five times more likely to experience a lot of personal mental health problems when taking care of a PWH of severe phenotype (odds ratio [OR]: 4.55, 95% confidence interval [CI]: 1.13–18.32) and when rendering care to a recipient that experienced ≥6 serious bleeds a year (OR: 3.94, 95% CI: 1.02–15.18), respectively. Caregivers were also found to be 12 times more likely to experience a lot of physical health problems when taking care of wheelchair-bound PWH (OR: 12.00, 95% CI: 0.89–161.65). Conclusion: Improved treatment of haemophilia with the establishment of a support system may be key in easing the burden of caregivers in resource-limited settings.

Keywords

• burden
• caregivers
• haemophilia
• nigeria
• quality of life