Parents' Experiences in Managing Treatment Compliance of Children with Thalassemia: A Phenomenological Study

Novi Yani Khusna Farida; Hani Risnawati; Ikrima Rahmasari

doi:10.55606/ijhs.v6i2.7698

Authors

Novi Yani Khusna Farida Universitas Duta Bangsa
Hani Risnawati Universitas Duta Bangsa
Ikrima Rahmasari Universitas Duta Bangsa

DOI:

https://doi.org/10.55606/ijhs.v6i2.7698

Keywords:

Parental Experience , Parents' Experiences, Phenomenological Study, Thalassemia Treatment Adherence, Treatment Compliance

Abstract

Background: Thalassemia major is a chronic genetic disorder that requires lifelong treatment, including routine blood transfusions and iron chelation therapy. This chronic condition demands the absolute involvement of parents as primary caregivers in managing treatment compliance to ensure an optimal quality of life for the child. Objective: This study aimed to explore in depth the subjective experiences of parents in managing treatment compliance for children with thalassemia. Methods: This study utilized a qualitative design with a descriptive phenomenological approach. Informants were selected using a purposive sampling technique at RSUD Dr. Moewardi Surakarta, involving 6 parents as primary participants. Data were gathered through in-depth interviews, non-verbal observations, and medical record documentation. The data were then analyzed using qualitative thematic analysis. Results: The analysis revealed 4 major themes: (1) Psychological shock and initial acceptance process, (2) Parents' adaptive strategies in maintaining child compliance, (3) Social support networks as a reinforcing factor, and (4) The dynamics of compliance between blood transfusion (high due to immediate clinical impact) and iron chelation therapy (low due to boredom and side effects). Conclusion: Parents of children with thalassemia face complex psychosocial and technical challenges. There is an imbalance in adherence between blood transfusion and iron chelation. These results emphasize the crucial need for family-centered nursing interventions and sustainable psychological support to mitigate caregiver burnout.

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