Mothers Experiences Having a Thalassemia Major Child: An Evidence From District Multan, Pakistan


Zahid Zulfiqar, National College of Business Administration & Economics Multan Sub Campus; Kamran Ishfaq, Bahauddin Zakariya University Multan, Pakistan

Thalassemia is an inherited blood disorder that is passesfrom parents to their children. It is a major health problem in Pakistan and South Asian countries. About 6-8 % population of Pakistanis are thalassemia carriers traits, thus more than 10 million thalassemia carriers are in Pakistan and every year 5000 children are born with the disease of thalassemia major. Thalassemia major patients require regular blood transfusions and medicines throughout their whole life that impact patients and their families, particularly mothers. The objective of the present study was to know the lived experiences of mothers having thalassemia major children and to dig out the effects of Thalassemia major on the mothers of the patients. This qualitative study explored the lived experience of 20 mothers of children with thalassemia major by conducting semi-structured interviews. The present study was conducted at the Thalassemia Centre of the Children’s Hospital and the Institute of Child Health Multan, Pakistan and data were analyzed by using content analysis. Ethical approval was obtained for the interviews from the ethics committee of the Hospital. The study reported that thalassemia major child disease that affects the mother’s life socially, psychologically, and economically. Mothers were stressed because of their childrens sickness. The study reported that the majority of the mothers had inadequate knowledge about the genetic disorders. Mothers were worried about their children’s frequent transfusions of blood and their behavioral changes. They were concerned about their child’s present status and their future. Most mothers had no sufficient knowledge about thalassemia disease, prevention, and management. They were worried about the childs appearance, education and difficulties, repeated blood transfusions, and costly medicines. Most mothers identified the effects of illness on their children’s school attendance. The study recommended that healthcare professionals including social workers should educate and inform the mothers clearly about the thalassemia disease, its management, and prevention. Community support programs must be started for the thalassemia patients’ parents. Thalassemia support groups should be established officially to provide social, psychological, emotional, and economic support to thalassemia patients and their mothers in addition to their basic knowledge of thalassemia.

This paper will be presented at the following session: