THE IMPACT OF CARING FOR A CHILD WITH THALASSEMIA ON MATERNAL HEALTH: A MIXED-METHODS STUDY

Sonali Malhotra, *Priya Marwah, Nikita Yadav, Siddharth Malhotra

ABSTRACT

Background: Thalassemia is a lifelong inherited blood disorder requiring continuous medical care. Although therapeutic advances have improved survival, caregiving responsibilities create substantial demands on families, especially mothers who commonly serve as primary caregivers. Objective: To evaluate the psychological, emotional, and physical impact of caring for a child with thalassemia on maternal well-being and to assess the role of support systems. Methods: A mixed-methods study involving 20 mothers of children with thalassemia attending a tertiary care center was conducted. Data were collected using structured questionnaires and semi-structured interviews assessing anxiety, burnout, sleep disturbances, fatigue, social isolation, and perceived support. Quantitative data were summarized descriptively, and qualitative responses were thematically analyzed. Results: Chronic anxiety was reported by 65% of participants, caregiver burnout by 58%, and sleep disturbances by 61%. Social isolation affected 52% of mothers, while depressive symptoms were reported by 40%. Frequent hospital visits were identified as a major stressor by 72% of participants. Support from family and healthcare professionals played an important protective role. Conclusion: Mothers caring for children with thalassemia experience substantial psychological and physical strain. Integrating caregiver-centered counseling and structured support programs into thalassemia care may improve both caregiver and patient outcomes.

Keywords:

Thalassemia, caregiver burden, maternal health, psychological stress, chronic illness, family-centered care.

 

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