Challenges of having a child with thalassemia in Pakistan: A phenomenological study

• Main Authors: Rehman, Inayat Ur, Khan, Tahir Mehmood, Bukhsh, Allah, Munawar, Khadeeja, Suleiman, Amal K, Long, Chiau Ming *, Chooi, Wen Han, Al-Worafi, Yaser Mohammed, Tahir, Humera, Fahad, Riaz Choudhry
• Format: Article
• Published: Elsevier 2023
• Subjects: RC Internal medicine; RJ Pediatrics
• Online Access: http://eprints.sunway.edu.my/2769/; https://doi.org/10.1016/j.pedn.2023.06.026

Background: Thalassemia is a persistent hemolytic disease and has debilitating effects on patients and their parents. Parents of these children experience pain and suffer from additional emotional strain as they provide daily and lifetime care and are mostly concerned about the health and future of their children. Aim: The study aimed to understand the experiences of parents of children with thalassemia related to their family, financial, social, treatment, and psychological issues in Pakistan. Methods: This descriptive phenomenological study recruited 21 parents of children with thalassemia through purposive sampling until data saturation was achieved. Analysis of transcribed interviews was performed through Colaizzi's method and themes and subthemes revolving around diagnosis, challenges, and treatment issues were extracted. Findings: A total of 21 Pakistani parents participated in this study. Most of the participants were females (n = 16, 76.19%), housewives/stay-at-home moms (n = 13 (61.90%), and were uneducated (n = 6, 28.57%). Regarding genetic traits, only three (14.28%) parents declared that they had genetic traits of thalassemia. The findings of our study revealed that thalassemia is enormously influenced by psychosocial and economic problems because of this disease in their families. Conclusion: Our findings indicated that parents of these children face multi-faceted challenges, such as physical, socio-emotional, financial, and familial. These findings may lead to an adequate understanding of their individual needs and efficient utilization of supportive and care programs. Practice implications: An understanding of such experiences, involving those distinctive to Pakistani culture, is especially vital to inform the care of these children and enhance their quality of life.