Challenges experienced by the parents of children with thalassemia at Liaquat University hospital, Hyderabad

Abstract

Background: Thalassemia an inherited genetic blood disorder that requires ongoing transfusion therapy and creates major psychological, social, economic, informational, and healthcare access challenges for caregivers. This study aimed to assess the challenges experienced by parents of children with thalassemia attending a tertiary care hospital in Hyderabad.

Material and methods: A descriptive cross-sectional study took place in the thalassemia ward of Liaquat University Hospital, Hyderabad, from Feb to July 2025. Convenience sampling was used to recruit 112 parents/guardians. Data were gathered using a structured questionnaire, and SPSS version 26 was used for data analysis. Chi-square tests with p < 0.05 were utilized, along with descriptive statistics (frequencies, percentages, means, and standard deviations).

Results: The study comprised 112 participants with almost equal males (50.9%) and females (49.1%). The highest age group was 31–40 years (33.9%); Psychological distress was common, including fatigue and restlessness (63.4%); uncertainty about the future (61.6%); and hopelessness (58.9%). 65.2% of respondents reported financial burden, 57.1% reported informational difficulties, 53.6% reported limited social support, and 56.3% reported healthcare access issues. There were significant associations between caregiver challenges and gender, education, residence, family type, and income (p < 0.05), but not with age.

Conclusion: Parents of children with thalassemia experience significant multidimensional burdens, with significant socioeconomic contributions. There is a need for specific interventions such as caregiver education, community or workplace psychosocial support, and better availability of health services to minimize caregiver burden.