Quality of life of Beta-thalassemia patients and caregivers, Namsom hospital

Abstract

Beta thalassemia is a hereditary disease which cause pale and fatigue. Their     symptoms need regular blood transfusion for long period. These symptoms may cause low quality of life of both       patients and caregivers. This qualitative research had objective (1) To examine patients and caregivers knowledge on thalassemia perception and quality of life of beta-thalassemia pediatric patients in     Namsom Hospital (2) To study the affected on quality of life of caregivers of beta-thalassemia pediatric patients (3) To study benefits of Thalassemia clinic in community hospital (4) To find out the way to  improvement the Thalassemia clinic. A qualitative research consisted of 17 participants (9 caregivers and 8 patients) by purposive-sampling in beta-thalassemia patients aged under 18 years old who were     visited to Thalassemia clinic, Namsom hospital by regular blood transfusion for at least 1 year. The study was beginning in August to November 2018 by in-depth semi-structured interview using           interviewing form,  modified from Pediatric quality of life inventory version 4.0 and analysis by content analysis.

Result: The results of quality of life of beta-thalassemia patients shown that social aspect is the best. Physical aspect they can do daily activities, exercise but have some limitations and can be solved by regular blood transfusion. School aspect, there is no problem in learning but may lead to miss a class sometime. Emotional aspect, patients are concerned about treatment process, prognosis of      disease and surgery. In part of caregivers, there is impact on economy, transportation and the impact will be more if having to go to Udonthani Hospital. Another impact is concern about patients.           Thalassemia clinic can help physical aspect the most in patients group and help economy and        transportation in caregivers group. Future development should provide information about the disease to patients and caregivers and extend to antenatal clinics.

Conclusion: The quality of life of patients, the social aspect is the best followed by physical, school and emotional respectively. The impact on caregivers is economy and transportation.           Thalassemia clinic helps physical aspect the most in patients and help economy and transportation in caregivers group. More comprehensive information is a plan to do.