Impact of thalassemia major on patients; families in south Punjab, Pakistan

ABSTRACT

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. Descriptive study. Four Thalassemic Centers [i] Thalassemia / Hemophilia Centre, The Children's Hospital and the Institute of Child Health Multan [ii] Fatimid Foundation Multan [iii] Amna Blood Foundation [iv] Minhajul Quran Multan. January-2013 to June-2013. 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. 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. 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