Psychosocial Impact on Parents of Children with Thalassemia Major Receiving Regular Blood Transfusions at a Tertiary Care Thalassemia Center in Azad Kashmir

Abstract

Background: Transfusion-dependent β-thalassemia major is a lifelong hematological disorder requiring regular blood transfusions and iron chelation therapy, imposing substantial clinical and psychosocial burden on affected families, particularly primary caregivers. Evidence from low- and middle-income countries suggests elevated levels of stress, emotional distress, and financial strain among parents; however, disease-specific quantitative assessments in the Kashmiri context remain limited. Objective: To quantify domain-specific psychosocial burden—including parental stress, emotional impact, perceived social support, coping capacity, and financial/practical strain—among parents of children with transfusion-dependent thalassemia major in Azad Kashmir and to examine associated sociodemographic predictors. Methods: A cross-sectional observational study was conducted among 109 parents recruited from two tertiary thalassemia centers. Data were collected using the Parenting Stress Index–Thalassemia Major (PSI–TM), a 20-item Likert-based instrument. Domain scores were standardized to percentages and analyzed using descriptive statistics, independent t-tests, and multivariable linear regression in SPSS version 26. Results: Severe burden was observed in parental stress (81.8%), emotional impact (81.0%), and financial/practical domains (85.4%), while social support (48.6%) and coping (52.6%) were moderate. Lower income and female caregiver status independently predicted higher overall psychosocial burden (p<0.05). Financial strain demonstrated the largest socioeconomic gradient (mean difference 9.6 points). Conclusion: Parents of children with transfusion-dependent thalassemia major experience profound psychosocial distress, particularly in stress and financial domains, underscoring the need for integrated psychosocial screening and targeted socioeconomic support within routine thalassemia care.