IMPACT OF THALASSEMIA MAJOR ON PATIENTS

FAMILIES IN SOUTH PUNJAB, PAKISTAN

Abstract

Objectives: The objectives of this study were to examine the level of awareness
of the parents regarding Thalassemia Major; the cost of treatment of Thalassemia Major Patients
and the sufferings it brings to the families; the social problems faced by patients’ families; to
identify the barriers patients’ families face in the treatment of Thalassemia child. Study Design:
Descriptive study. Setting: Four Thalassemic Centers (i) Thalassemia / Hemophilia Centre, The
Children’s Hospital & the Institute of Child Health Multan (ii) Fatimid Foundation Multan (iii) Amna
Blood Foundation (iv) Minhajul Quran Multan. Period: January-2013 to June-2013. Methods:
A sample of 500 respondents was drawn from the total population and structured interview
schedule was administrated. Data were analyzed and interpreted by using SPSS (Statistical
Package for Social Sciences) 19.0 version software. The structured interview was discussed
with two experts of the Sociology Department and two Senior Doctors (>8 years’ experiences)
working in the Thalassemia centers and Government Health Institutions. It was revised to
incorporate recommended improvements. Descriptive and inferential statistics were applied to
analyze the data that includes: frequency, percent, mean, standard deviations. Results: Data
indicated that 100(20.0%) respondents were patients’ father while 329(65.8%) were mothers
and 71(14.2%) were close relatives. Of the 500 respondents, 306(61.2%) were married to their
first cousins, 91(18.2%) of the respondents were married to their second cousins, 34(6.8%) of
the respondents married in distance relatives and 69(13.8%) of the respondents married out of
family. Conclusion: The study summarized that the health care providers should be encouraged
to talk about Thalassemia as a public health problem in Pakistan and should enhance the public
awareness to eliminate the Thalassemia in Pakistan.