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.
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There are two types of thalassemia 1st is Alpha-thalassemia and the 2nd is Beta-thalassemia and are also called alpha hypochromic anaemia and beta hypochronic anaemia respectively.
Alpha hypochromic anaemia happens once the factor that controls the creating of alpha globins is absent or defective. It is gentle to severe and is most ordinarily found in individuals of African, geographic area, Chinese, Southeast Asian, and, sometimes, Mediterranean descent. Some youngsters with alpha hypochromic anaemia haven't any symptoms and will need no treatment. Others with a lot of severe cases would like regular blood transfusions to treat anemia and different symptoms. A baby will solely get alpha hypochromic anaemia by inheritable it from his or her oldsters. Genes are "building blocks" that play a very important role in determinative corporal traits and bounty of different things concerning us. Homosepians are created of trillions of cells that variety the structure of our bodies and do specialised jobs like taking nutrients from food and turning them into energy. Red blood cells, that contain haemoglobin, deliver O to all components of the body.
Beta hypochromic anaemia could also be the foremost known variety of thalassaemia and is additionally known as Cooley's anemia. It's caused by an amendment within the factor for the beta globin part of Hb. Beta monogenic disease causes variable anemia which will vary from moderate to severe, relying partly on the precise genetic amendment underlying the sickness. Beta monogenic disease may be classified supported clinical symptoms. Beta thalassemia sometimes causes severe anemia which will occur inside months when birth. If left untreated, severe anemia may result in skimpy growth and development, yet as different common physical complications which will result in a dramatically bated life-expectancy. Fortuitously, in developed countries beta hypochromic anaemia is sometimes known by screening within the newborn period, before symptoms have developed.

Both types of Hemophilia A and B are caused by a hereditary imperfections present on the X DNA. (Hemophilia C is innate in an unusual manner.) Regarding 70 percent of all citizens with hemophilia type A or hemophilia type B innate the disease. Other 30 percent extend from an impulsive hereditary transmutation. The consequent concepts are imperative to understanding the heritage of these disorders. All humans have two DNAs determining their sexual category: The difference between males and females with respect to chromosomes is XY and XX respectively. Since the part of chromosome also known as trait is accepted only on the X chromosome, it is also known as "sex-linked chromosome" The chromosome's defective unit is referred to the factor. Both genes 1st are factor VIII and 2nd is factor IX are formed by hereditary faults of the X chromosome, so both types of hemophilia are sex linked. Since a feminine kid all the time receives two X DNAs, she almost always will be given at least one usual X DNA. Consequently, even if she receives one defective X chromosome, she still competent to produce an enough amount of factors c and IX to evade the signs of hemophilia. An individual who has one defective DNA and this person has not suffered from hemophilia its mean he is carrier. He carries the defected gene and can transfer it on to his children. If, yet, he has a son who receives his defective X DNA, he will not be capable to make the right amount of genes VIII or IX, and he will also endure some types of hemophilia.
In the case of severe blood disease, the primary hemorrhage event sometimes happens before eighteen months older. In some babies, blood disease is suspected directly, once a routine circumcision (removal of the foreskin of the penis) ends up in remarkably serious hemorrhage. Toddlers are at explicit risk, as a result of the fall often, and will bleed into the soft tissue of their arms and legs. These little bleeds end in bruising and noticeable lumps, however do not sometimes would like treatment. As a baby becomes a lot of active, hemorrhage could occur into the muscles; a way a lot of painful and enervating downside. These muscles bleeds end in pain and pressure on the nerves within the space of the bleed. Harm to nerves will cause symptom and attenuate ability to use the gashed limb.