LIVED EXPERIENCES OF ADULT THALASSEMIA PATIENTS VISITING A TERTIARY CARE HOSPITAL IN PESHAWAR
DOI:
https://doi.org/10.71000/j1s40308Keywords:
Beta thalassemia, Adult, Anemia, Blood Transfusion, Chelation Therapy, Quality of Life, Socioeconomic FactorsAbstract
Background: Thalassemia is an autosomal recessive blood disorder characterized by defective hemoglobin synthesis leading to chronic anemia and dependence on lifelong medical care. Beta thalassemia major, the most severe form, not only imposes significant medical challenges but also disrupts education, social participation, and overall quality of life. Understanding the lived experiences of patients is essential for informing holistic care strategies and policy responses.
Objective: The study aimed to explore the challenges encountered by adult patients with beta thalassemia major in managing their treatment, educational activities, and health-related quality of life.
Methods: This qualitative study employed a hermeneutic phenomenological approach to capture the lived experiences of affected individuals. Purposive sampling was used to recruit 13 participants (8 males and 5 females) from a tertiary care hospital in Peshawar. Participants were aged 18 years and above and diagnosed with beta thalassemia major. Data were collected through semi-structured, in-depth interviews conducted in the native language for clarity and comfort. All interviews were audio-recorded, transcribed verbatim, and translated into English. Thematic analysis was performed following Braun and Clarke’s six-step framework to generate themes and subthemes. Ethical approval and informed consent were secured prior to data collection.
Results: Analysis revealed three main themes: treatment-related challenges, education-related challenges, and health-related quality of life. Under treatment challenges, 11 participants reported difficulties in arranging regular blood donors, 9 highlighted frequent shortages of chelation or supportive medications, and 10 described severe financial hardships due to out-of-pocket treatment costs. Educational barriers were noted by 8 participants, with discontinuation or poor performance linked to physical weakness, cognitive burden, or lack of parental support. Regarding health-related quality of life, 12 participants reported limitations in physical wellbeing, 7 expressed psychological stress such as anxiety or depression, while most described diminished social functioning due to dependency and social isolation.
Conclusion: The study concluded that adult patients with beta thalassemia major face interconnected medical, educational, financial, and social challenges. These findings emphasize the urgent need for comprehensive interventions, including sustained medication supply, organized donor networks, financial assistance, educational support, and culturally appropriate psychosocial care to improve the quality of life of this vulnerable population.
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