Date of Award

5-20-2022

Degree Type

Thesis

Degree Name

Master of Health Policy and Management

First Advisor

Dr Muhammad Asim

Second Advisor

Ms Nousheen Pradhan

Third Advisor

Dr Sadaf Altaf

Department

Community Health Sciences

Abstract

Introduction: Thalassemia is an inherited blood disorder with a prevalence of 5% worldwide. It is an emerging public health issue in Pakistan. It requires lifelong blood transfusion and chelation therapy with multidisciplinary care. Thalassemia is prevalent mainly in Africa, the Middle East, the Mediterranean, the Far East, and South Asia. Pakistan's weak health system has led to poor compliance with the treatment guidelines resulting in poor quality and low life expectancy of life of children with thalassemia (major).
Study objectives: The objective of the study was to explore the experiences of family caregivers of children living with Beta Thalassemia (major) residing in Karachi and to identify the enablers and barriers for family caregivers for health service utilisation for their children living with thalassemia (major)
Methodology: The interpretative phenomenological research design was employed for this study to gain insight into the caregivers experiencing the phenomenon. The in-depth interviews were conducted with 18 caregivers at selected thalassemia centres in Karachi using a non-probability purposive sampling technique. Thematic analysis using both inductive and deductive approaches was employed.
Results: The study's findings were interpreted at individual, interpersonal and organizational levels, highlighting the challenges of caregivers seeking treatment for their children with thalassemia major. It was explored that caregivers were unaware of their carrier state and had limited knowledge of the disease. Financial constraints, worries about the child's future, and difficulties in seeking care and child-rearing were main challenges for the caregivers of children with living thalassemia(major). The absence of emotional and social support has made the caregivers feel helpless and hopeless. The obstacles in registration at thalassemia care centres, expensive chelating agents and non-availability of blood were significant challenges for caregivers. The absence of guidelines for thalassemia carrier detection among mothers in antenatal care was also highlighted in the study.
Conclusion: The lack of knowledge about the disease and carrier state among caregivers was a critical finding that stresses the need for premarital screening programs implementation. Thalassemia carrier detection of mothers should be included in antenatal guidelines and counselling at primary level prevention. The caregivers faced problems seeking care for their children with thalassemia (major), increasing their difficulties. There is a need to set up a satellite thalassemia center connected to a state-of-the-art tertiary care thalassemia hospital in the public sector.

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Last Page

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