Burden of Care and Quality of Life Among Caregivers of Filipino Children With Haemophilia Before and During the COVID‐19 Pandemic: A Cross‐Sectional Study
Year: 2025
Type: article
Study design: Observational Study
Abstract: INTRODUCTION: The pandemic affected the quality of life (QoL) of children with haemophilia, nevertheless their caregivers. The disease burden to caregivers and its influence on well-being may become a determinant of the quality of care they provide, impacting the overall patient's outcome. AIMS: This study aimed to determine the effects of the pandemic on the caregiver burden, QoL, anxiety and/or depressive symptoms of caregivers. METHODS: Validated questionnaires: Modified Caregiver Strain Index Pilipino (MCSI-P), Hospital Anxiety and Depression Scale (Pilipino) (HADS-P) and WHO-5 Well Being Index (Pilipino) were given to caregivers of paediatric haemophilia patients in the patient roster. RESULTS: Among the 72 participants, 21 had caregiver strain/burden, while five had impaired QoL pre-pandemic. During the pandemic, the prevalence of caregiver strain (55.6%) and impairment in QoL (20.8%) significantly increased. While the pre-pandemic prevalence of caregiver burden was comparable from data in published literature, there was a significant increase during the pandemic. Anxiety (8.3%) and depressive symptoms (4.2%) among caregivers were below the pre-pandemic range and did not significantly increase during the pandemic. Impaired QoL was not associated with depressive/anxiety symptoms, but it was observed that caregivers showed more anxiety than depressive manifestations. CONCLUSION: The pandemic significantly increased the prevalence for caregiver burden. Increased rates of psychological symptoms were observed during the pandemic, but not statistically significant. There was no association between impaired QoL and caregivers' psychological symptoms. While much focus was given to the patients themselves, paramount attention to caregiver burden and compromised QoL should be evaluated and addressed as well.
Source: Haemophilia
DOI: 10.1111/hae.70148
Authors: Noah S. Sacluti, Flerida G. Hernandez
Institution: University of Santo Tomas Hospital
Language: English
Subfield: Hematology
Field: Medicine
Domain: Health Sciences
Open Access status: bronze
OpenAlex ID: W4415285818