To explore the socio-economic problems of parents/ guardians of thalassemic children.
To assess the efforts being carried out by the NGO in connection with serving the suffering humanity.
To explore the ways in which funding/ donor agencies, philanthropists, and general public can more efficiently help Thalassemic patients and their parents/ guardians.
Study Design: Snapshot study.
Place and Duration of Study: Ali Zaib Blood Transfusion Services Sahiwal, from July, 2015 to September 2015.
Methodology: One hundred and sixteen parents/ guardians of beta thalassemia major patients were enrolled in this study. A questionnaire was developed and parents/ guardians were interviewed to assess their socio-economic status, problems, and efforts being carried out
by the NGO regarding services being provided to them and to their opinions about how the donor agencies and philanthropists can efficiently helm them.
Results: Total numbers of respondents were 116 from which 51 respondents with the % of 43.97 were male and 65 female with a rate of 56.03%. 46 respondents out of 116 with a rate of 39.66% belonged to rural areas while 70 respondents with % of 60.34 belonged to urban areas. The respondents belonged to age group of ‘20-30’ years, 36.21 % respondents belonged to age group ’31-40’ years, 42.24 % of the respondents belonged to age group ’41-50’ years, and 7.76 % of the respondents belonged to age group of ’above 50’ years. Among the total 116 respondents, 42.24 % respondents were non-literate, 37.07 % of the respondents were under metric, and 17.24 % of the respondents were metric and above but less than graduate
and 3.45 % respondents were graduate or above. The family income of 16.38 % respondents was less than 10,000, 53.45 % respondents’ family income was between 10,001 to 20,000, 23.28 % of the respondents had 20,001 to 30000, and 6.90 % of the respondents had monthly income of more than Rs.30,000 per month from all of their sources. 53.45 % respondents had one Thalassemia patient, 37.93 % respondents replied that had two Thalassemia patients, 8.62 % of the respondents claimed that they had three children with Thalassemia. However not a single respondents claimed that he/ she had more than three Thalassemia children. All (100%) respondents claimed that they were feeling excessively disturbed due to illness of their patient. 12.07 % respondents were slightly, 18.10 % respondents moderately and 69.83 % respondents were claimed that they were unable to concentrate on their day to day work due to illness of their patient. 2.59 % respondents claimed that their economic status slightly, 10.34 respondents claimed that their economic status moderately and 87.07 % respondents claimed that their economic status was
excessively affected due to illness of their patient. 20.69 % respondents claimed that they were not downgraded by their relatives while 9.48 % claimed that they were slightly, 16.38 % moderately and 53.45 % claimed that they were excessively downgraded by their relatives. 5.17 % respondents claimed that they were slightly, 12.07 % claimed that they were moderately and 82.76 % claimed that they were excessively unable to attend social gathering due to illness of their patient. 68.79 % respondents claimed that their relationship with their spouse was not affected. While 6.03 % claimed slightly, 5.17 % claimed that moderately and 25 % respondents said that excessively their relation with their spouse was affected due to the illness of their child. 6.90 % respondents visit Ali Zaib Blood Transfusion Services once in a month, 68.10 % visit twice a month, 18.97 % visit thrice a month and 6.03 % visit more than 3 times a month for the blood transfusion and medical treatments of their patients. 25.00 % respondents claimed moderately while 75.00 % claimed that Ali Zaib Blood Transfusion Services has minimized their disturb feelings and help improve their social
standing. 20.69 % respondents claimed that the disease did not affected their desired family size, while 6.03 % claimed that it affected slightly, 9.48 % claimed that it moderately and 63.79 % claimed that it excessively affected their desired family size. 27.59 % respondents claimed that they were not getting blood transfusion from the government hospital due to poor services, 59.48 % replied that due to non availability of blood and 12.93 % respondents claimed that there was no Thalassemia center in the government hospital in their vicinity. 100 % respondents were claiming that Ali Zaib Blood Transfusion services have minimized their economic burden regarding disease. 7.76 % respondents were moderately and 92.24 % were excessively satisfied by the services being provided by the Ali Zaib Blood Transfusion Services. 16.38 % respondents were of the view that Ali Zaib has not been providing complete solution of their socio-economic problems while 15.52 % replied that it was slightly, 27.59 % replied it was moderately and 40.52 % replied that it was excessively providing complete solution of their socio economic problems. 15.52 % respondents were
moderately, while 84.48 % respondents were excessively satisfied with the behavior of Ali Zaib Blood Transfusion Services. 44.83 % respondents, due to their poor financial conditions, and 23.28 % due to low level of social gatherings were unable to support Ali Zaib Blood Transfusion services. While 4.31 % were support it through their charities and 27.59 % were of the opinion that they were motivating their relatives to do so. 11.21 % respondents were moderately and 88.79 % respondents were excessively satisfied that Ali Zaib Blood Transfusion services were providing innovative treatments to their patients. 78.45 % respondents were of the opinion that physical infrastructure of Ali Zaib Blood Transfusion services must be improved. While 18.97 % wanted improvement in Laboratory and blood bank and 2.59 % replied that overall management efficiency must be improved by the organization. 100% % respondents were of the opinion that the level of the services of Ali Zaib Blood can be excessively improved through the support of philanthropists/ donors. 59.48% % respondents were of the opinion that philanthropists/ donors can
support Ali Zaib Blood Transfusion services by provision of laboratory and medical equipments while 40.52 % were of the opinion that philanthropists/ donors can support it financially. 100% % respondents were of the opinion that the permanent solution of the disease was that the Government should make policy to restrict the marriages which are the reasons of Thalassemia.
CONCLUSION
Ali Zaib Foundation had not any permanent and solid source of income, so, it was really difficult for said organization to provide proper blood transfusion and free medical treatments to the patients. It was observed that the focus of the organization was more on the treatment the patient, but little on awareness regarding prevention of the said diseases. The building in which the medical treatment was being provided to the patients was not according to the requirements such as: there was not proper waiting area, which also increasing the problems of the patients and especially for their attendants. The organization was, however, working properly, efficiently and smoothly with its scared resources. The patients and their attendants were of the opinion that
they are being treated better at Ali Zaib Foundation than that of the Government hospitals.
The socio-economic condition of the most of surveyed parents/ guardians of Thalassemia patients was miserable. Having lack of social gathering, downgraded by their relatives physical impairments, financial burdens and problems with their relation with spouse was create additional problems in their life. A large number of parents were poor and also they had 2 of more thalassemia children All of this creates lots of socio-economic problems in their life. Most of the parents/ guardians of thalassemia patients were bound to travel towards transfusion center for the blood transfusion and medical treatment twice, thrice or even more than 3 times a month. This was also creating financial burden and psychological problems such as pay traveling expenditure, and to manage time to go to the transfusion center.
The parents/ guardians of Thalassemia patients were satisfied with the behavior of the staff and services being provided by the organization. Respondents’ especially belonged to
rural areas were of the opinion that they could not get blood transfusion facilities from the government hospitals due to poor services, non-availability of blood at the government hospitals and no Thalassemia care centers in the government hospitals in their vicinity. Respondents were also agreed that the organization minimized the economic burden from their families regarding treatment of the disease. They were wanted to support the organization but due to their poor financial conditions and low level of social gathering they were unable to support it. Some respondents however were supporting the organization through charities and some were motivating their relatives/ friend to do so. All they were agreed that support from donors/ philanthropists could improve the level of services of the organization. Most respondents were of the opinion that donors/ philanthropists should support the organization through provision of laboratory and medical equipments some respondents however were of the opinion that organization should also be supported through financial support
All the respondents were agreed that the sustainable / permanent solution of the problems of the parents of Thalassemia patients was that the government should make a policy to restrict the marriages which were the reasons of spreading Thalassemia.
REFERENCES
1. Abdelrazik, N. (2007) Pattern of iron chelation therapy in Egyptian beta thalassemic patients: Mansoura University Children's Hospital experience. Hematology, 12: 577-585.
2. Ahmed, S., Saleem, M., Modell, B., Petrou, M. (2002) Screening extended families for genetic hemoglobin disorders in Pakistan. NEJM; 347:1162 - 1168.
3. Aziz, K., Sadaf. B., Kanwal, S. (2012) psychosocial problems of Pakistani parents of thalassemic children: a cross-sectional study done in Bahawalpur, Pakistan. Biopsychoso Med; 6:15.
4. Bills, S. (2001) Congenital Disorders of Blood Cells. Medical International, Pakistan edition. ; 20-27.
5. Caocci, G., Efficace, F., Ciotti. F., Roncarolo., MG, Vacca., A., Piras, E., et al. (2012) Health related quality of life in Middle Eastern children with beta-thalassemia. BMC Blood Disorders; 12:6
6. CAO, A., AND GALANELLO, R. (2002), Effect of consanguinity on screening for thalassemia. N. Engl. J. Med., 347: 1200-1202.
7. Cohen, L., Manion, L., Morrison, K. (2000) Research Methods in Education [5 th edn] London: Routledge Falmer. Teaching in Higher Education.;41.
8. Clarke, SA., Skinner, R., Guest, J., Darbyshire, P., et al. (2010) Health- related quality of life and financial impact of caring for a child with thalassaemia major in the UK. Child
Care, Health and Development 36:118-22
9. Ishaq, F., Hasnain., Abid., Akhtar., A, Mahmood., S. (2012) Awareness among Parents of ββ-Thalassemia Major Patients, Regarding Prenatal Diagnosis and Premarital Screening. Journal of the College of Physicians and Surgeons Pakistan; 22(4):218-21.
10. Jelvehgari, M., Mashayekhi SO. (2007) Demographic and clinical aspects in thalassemic or hemophilic patients referred to pediatric hospitals in Tabriz city, 2004, Iran. Res J Biol Sci;2(5):543-5
11. Karimi, M., Johari, S., Cohan, N. (2010) Attitude toward prenatal diagnosis for b-thalassemia major and medical abortion in Southern Iran. Hemoglobin; 34:49-54.
12. Khan. DA., N. Asma, M., Anwar and A. Farooq. (2010) Deferiprone challenge test monitoring iron overload
in hepatitis positive thalassemic major patients. International Journal of Clinical and Experimental Medicine, 3: 122-128.
13. Khattak, ST., Khan, J,. (2004) Heterozygous beta thalassemia in parents of children with beta thalassemia major. Gomal Journal of Medical Sciences.;4(2).
14. Lodhi, Y. (2003) Economics of thalassemia management in Pakistan. In Thalassemia Awareness Week, Ed. Ahmed S. Friends of Thalassemia.
15. Mubina. Farid. Samina. Farid, M. Alamgir and Saif-ur-Rehman. (2002) Department of Rural Sociology, University of Agriculture, Faisalabad Pakistan, Role of Non- Government Organization in Improving Socio-Economic and Physical conditions of the patients aof Thalassemia and
Hemophilia, Pakistan journal of Applied Sciences 2(5): 579-583, © Copyright by the science publications.
16. Payne, KA., Rofail, D., Baladi, JF., Viala, M., Abetz, L., Desrosiers, MP., et al. (2008) Iron chelation therapy: clinical effectiveness, economic burden and quality of life in patients with iron overload. Adv Therap; 25:725-42.
17. Rahman, MU., Lodhi, Y. (2004) Prospects and future of conservative management of beta thalassemia major in a developing country. Pak J Med Sci ; 20:105
18. Riewpaiboon, A., Nuchprayoon, I., Torcharus, K., Indaratna, K., Thavorncharoensa, M., Ubol, BO. (2010) Economic burden of betathalassemia/ Hb E and beta-thalassemia major in Thai children. BMC Res Notes; 3:29.
WHO-TIF Meeting. (2008) Management of hemoglobin disorders. Report of a joint WHO- TIF meeting; Nicosia, Cyprus. Geneva.
20. Saleem, M., Qureshi, FZ., Qureshi, TZ., Anwar, M., Ahmed, S. (1995) Evaluation of M/H ratio for screening of beta Thalassaemia trait. J Pak Med Assoc; 45: 84-6.
21. Weatherall, DJ. (2005) Keynote address: the challenge of Thalassemia for the developing
countries. Ann New York Acad Sci 1054:11-7.
22. WHO Working Group. (1983) Community control of hereditary anaemias. Memorandum from a WHO meeting Bull WHO, 1: 63-80.
23. Zaman, Q., Salahuddin, M. (2006) Association between the Education and Thalassaemia: A Statistical Study. Pakistan Journal of Statistics and Operation Research. 2(2):103-10.