Impact of Thalassemia Major on Patients

Abstract

Objectives: The objectives of this study were to examine the level of awarenessof the parents regarding Thalassemia Major; the cost of treatment of Thalassemia Major Patientsand the sufferings it brings to the families; the social problems faced by patients’ families; toidentify the barriers patients’ families face in the treatment of Thalassemia child. Study Design:Descriptive study. Setting: Four Thalassemic Centers (i) Thalassemia / Hemophilia Centre, TheChildren’s Hospital & the Institute of Child Health Multan (ii) Fatimid Foundation Multan (iii) AmnaBlood 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 interviewschedule was administrated. Data were analyzed and interpreted by using SPSS (StatisticalPackage for Social Sciences) 19.0 version software. The structured interview was discussedwith 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 toincorporate recommended improvements. Descriptive and inferential statistics were applied toanalyze the data that includes: frequency, percent, mean, standard deviations. Results: Dataindicated that 100(20.0%) respondents were patients’ father while 329(65.8%) were mothersand 71(14.2%) were close relatives. Of the 500 respondents, 306(61.2%) were married to theirfirst cousins, 91(18.2%) of the respondents were married to their second cousins, 34(6.8%) ofthe respondents married in distance relatives and 69(13.8%) of the respondents married out offamily. Conclusion: The study summarized that the health care providers should be encouragedto talk about Thalassemia as a public health problem in Pakistan and should enhance the publicawareness to eliminate the Thalassemia in Pakistan.

Thalassemia: A Review of the Challenges to the Families and Caregivers

“…Genetic counseling intervention helps parents to ease their suffering and solve their problems [30]. Lack of knowledge, ignorance of the disease, and lack of premarital screening practices play a major role in the propagation of this disease [43]. Thalassemia carriers are mostly unaware of the disease condition that actually acts as a source of disease.…”

“…Thalassemia carriers are mostly unaware of the disease condition that actually acts as a source of disease. Only premarital screening can detect this condition [43]. However, many people are reluctant or afraid to do the screening test due to societal norms and its adverse effect on the marriage prospectus or due to ignorance about the disease [43].…”

“…Only premarital screening can detect this condition [43]. However, many people are reluctant or afraid to do the screening test due to societal norms and its adverse effect on the marriage prospectus or due to ignorance about the disease [43]. Consanguineous marriage among first cousins has a significant role in the continuation of the disease process.…”

“…Consanguineous marriage among first cousins has a significant role in the continuation of the disease process. Studies have shown that most parents with thalassemic children were found to have consanguineous marriages [29,33,43]. Therefore, it is required to emphasize developing awareness of the disease and encourage carrier detection by doing premarital screening and counseling to reduce the disease frequency among the population (Figure 4).…”

A Hematologic Disease in the Turkish Republic of Northern Cyprus: Thalassemia Major

“…Therefore, patient's quality of life and psychosocial states are negatively affected (4,(11)(12)(13). The individual's physical health, psychological condition, social relations, personal beliefs and the quality of life, including relationships with the people, are negatively affected by the chronicity of thalassemia, the need for blood transfusion at regular intervals throughout life, and the related complications (10,13,14). Frequent hospitalization due to transfusion, staying away from the family, activity limitations and pain, side effects of iron chelation therapy, and fear of death can also lead to anxiety, stress, hopelessness and depression (15,16).…”