Care-Related Quality of Life of Caregivers of Beta-Thalassemia Major Children: An Epidemiological Study in Eastern India

Abstract

Caregivers are the persons who provide care at the time of distress or illness. They face many stress and strain to provide the best possible medical care for their children. There are very few studies that explored the care-related quality of life (CarerQoL) of the caregivers of thalassemic children and its correlates. With this background, the current study was designed to explore the CarerQoL of the caregivers of β-Thalassemia Major (β-TM) children and its various correlates. It was a cross-sectional observational study conducted among caregivers of β-TM children attending a tertiary care health facility of Eastern India in between May 2016 and April 2017 with a structured schedule. The median CarerQoL score was found to be 5 with an interquartile range of 4–7 (range: 11). In the final multivariable logistic regression model, care receivers’ (thalassemic children) age [adjusted odds ratio (AOR): 2.2 (1.2–4.2)], spleen status [AOR: 4.1 (2.0–8.7)], blood transfusion frequency [AOR: 2.1 (1.1–3.9)], and quality of life (QoL) [AOR: 3.0 (1.6–5.5)] and caregivers’ educational level [AOR: 2.3 (1.2–4.1)], perceived social discrimination [AOR: 2.3 (1.3–4.1)], debt [AOR: 2.3 (1.2–4.3)], nongovernmental organization assistance [AOR: 2.0 (1.0–4.0)], and wage loss due to seeking treatment [AOR: 1.9 (1.1–3.4)] were significant predictors of CarerQoL of the study participants adjusted with their age, sex, working status, per-capita monthly income, knowledge level related to the disease, and care receivers’ comorbidity status. To conclude, CarerQoL of the study participants were significantly associated with QoL of their wards. Other significant associates of CarerQoL were caregivers’ education level, financial profile, patients’ age, and their clinico-therapeutic profile.

Keywords

• Thalassemia
• caregivers
• quality of life
• education
• knowledge
• social discrimination