A Phenomenological Study of Psychosocial and Educational Challenges of Parents having Children with Thalassemia
Keywords:
Thalassemia, Caregivers, Psychosocial problems, educational challenges, cooping strategiesAbstract
Thalassemia is a major public health problem and the most common hereditary disease in the world. Having no permanent cure, Thalassemia is reported to create stress for the patient's families. Especially the caregivers of thalassemia children face many socio-psychological, educational, and financial challenges related to the illness of their children. Therefore, the present study was aimed to explore the parents’ experiences of thalassemia patients, particularly their educational challenges. A phenomenological research design was adopted to investigate the research questions. Through purposive sampling technique, the sample of 10 caregivers of thalassemia patients from Safe Life Thalassemia Centre Sargodha were selected. The interview guide was used to collect the data. Through thematic analysis, five major themes were generated including, Economic constraints, psychological concerns, social apprehension, impact on daily family life, and child's educational experiences. The results of the present study indicated that caregivers especially mothers of patients face multiple challenges including socio-economic problems, psychological worries, and issues of overall integration in their respective communities. This study concluded that children due to their illness, face difficulties in school and remain absent for longer period of time and consequently they suffer psychologically which further increase the severity of their illness. Moreover, due to this disease, day to day family life of patients affect too, leaving them more vulnerable to cope with the challenges. This situation demands institutional support and mechanism for thalassemia patients to continue their education and special trainings of coping strategies for the caregivers.
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Copyright (c) 2023 Nargis Abbas, Tahira Gilani, Rashna Asif
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