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ABSTRACT

OBJECTIVES: To identify the psycho-social and economic impact of Thalassemia major on patients' families.STUDY DESIGN: A cross sectional study.PLACE AND DURATION: The study was conducted in the Thalassemia Centre, The Children's Hospital & the Institute of Child Health

st th Multan (CH&ICH) from 1 March 2015 to 28 July 2015. METHODOLOGY: The data was collected from the 500 registered Thalassemia major patients' parents who visited Thalassemia Centre of the Children's Hospital & the Institute of Child Health Multan (CH&ICH). The structured interview was used as a tool for data collection with the help of convenient sampling. Written and verbal informed consent was obtained from the parents. Data was analyzed and interpreted by using the Statistical Package for Social Sciences (SPSS) 20.0 version software. The structured interview was discussed with two senior doctors (>8 years' experience) working in the Thalassemia Centers and public health institutions. It was revised to incorporate the recommendations and improvements. Descriptive and inferential statistics were applied to analyze the data which include: frequency, percent, mean, standard deviation.RESULTS: A total number of 500 thalassemia major patients' parents were recruited in this study who visited to the Thalassemia Centre, The Children's Hospital & the Institute of Child Health Multan for the treatment of their children. The majority of the respondents were mothers (76.2%) while (23.8%) of the respondents were fathers. Of the 500 respondents majority of the parents were belonging to the Saraiki background (43.0%), Urdu (21.6%), Balouchi (19.0%), Sindhi (0.6%), Pathan (5.8%) and Punjabi (5.8%). Grater part of the respondents were unemployed (31.6%), while (14.0%) were businessmen, (24.0%) were private jobs, (4.0%) were doing Government Jobs and immense part of the respondents were laborers (26.4%). The monthly income of about (59.12 %) of the respondents was below PKR 10,000. CONCLUSIONS: A substantial number of parents have psycho-social and economic problems due to the thalassemia disease of their child. The study summarized that the parents of thalassemia major patients and the general public should be sensitized in this regard. Thalassemia prevention program should be introduced to minimize the burden of Thalassemia major patients' parents.KEYWORDS: Psycho-social, Economic, Impact, Thalassemia Major, Patients, Families.

ORIGINAL ARTICLE

PSYCHO-SOCIAL AND ECONOMIC IMPACT OFTHALASSEMIA MAJOR ON PATIENTS' FAMILIES

1. Social Welfare Officer,2. Librarian, The Children's Hospital & The Institute of Child Health Multan, Pakistan3. M.Phil Scholar, Gender Studies Department Bahauddin Zakariya University Multan. Pakistan.4. Lecturer of Sociology, Government College for Girls, Liaqat Pur, Pakistan

Correspondence to:Kamran IshfaqSocial Welfare Officer,The Children's Hospital &The Institute of Child Health Multan, PakistanEmail: kamranishfaqchc@gmail.com

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INTRODUCTION

Thalassemia is an inherited blood disorder which is passed from parents to their children in which abnormal hemoglobin born in the bodies. This disorder results in extreme destruction of red blood cells and there is no effective treatment. Thalassemia major patients dependent on the regular blood transfusions throughout life. In Pakistan, thalassemia is seen in almost all parts of the country. It is an estimated that about 9000 beta

1 Thalassemia children are born every year in Pakistan. Further, it's a serious disease causing severe anemia. There is no Thalassemia disease registry in Pakistan. Most recent data shows that national carrier rates at 5-7 percent (approximately

2 10 million). Due to cultural and the religious scenario in

Pakistan premarital screening and prenatal diagnosis are not common among the families. Thalassemia major patients faced other associated problems like heart, liver, endocrine and skin, glands. The concept of termination of pregnancy is an ethical issue in Pakistan. The only cure of Thalassemia major is bone marrow transplant, which is beyond the reach of maximum families in this Country. Approximately Thalassemia major patients required 8000-10000 PK rupees medicines per month

3 and they are dependent on the regular transfusion. In the developing countries like Pakistan, the major reason of thalassemic deaths are due to non compliance of treatment because of psychosocial and economic factorsThe best way to reduce the burden of thalassemia disease is prevention. There are different strategies to prevent the Thalassemia, which include population screening, parental education, prenatal diagnosis and genetic counseling. The Countries like Turkey and Cyprus have implemented the

4 strategy of stopping birth of new Thalassemia children. In Iran, premarital screening, genetic counseling has been made compulsory by the Government. This strategy has produced

5good results for the prevention of Thalassemia in their Country. A limited number of studies have been carried out in Pakistan, but these studies reported that Thalassemia major disease not only affect the child health, but also devastating the psychological, social and economic burden for the families. But previously no study has been carried out in the population of Southern Punjab, Pakistan, therefore this study is carried out to fill the gaps in the literature and to contribute to it.

1KAMRAN ISHFAQ , SALMAN BIN NAEEM TANVEER AHMAD SAFIA ZAINAB2 3 4, ,

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Figure - 2 described the distribution of respondents by their marriage type. Of the total 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. It is observed that

st306(61.2%) couples married endogamous with 1 cousins. It further shows that mostly the marriage with the first cousin leads to the Thalassemia Major in the family.

Respondents were asked multiple statements regarding psycho-social and economic impact of the disease. Majority of the respondents 'some extent' feel that their life is unsuccessful and messed-up because of a child disease (µ=3.10). They 'some extent' feel hesitation while talking about the disease to others (µ=2.70). However, they feel mental stress 'not at all' because of the child disease (µ=1.05). They 'some extent' participate in different family gathering (µ=3.39) and were having 'not at all' homelessness feelings because of a child disease (µ=1.42). They 'some extent' receive assistance from relatives in time of need (µ=3.46). However, a child disease effects conjugal relationship 'to a great extent' (µ=3.50). But they feel financial burden 'not at all' because of a child treatment (µ=1.01) (Table 2).

For the determination of thalassemia carrier status, parental screening is very important to help the couple, but unfortunately genetic counseling tests are still not a common practice in Pakistan. The study will help policy makers, philanthropist, social worker, and society member and health professionals understand the miseries of Thalassemia major on patients' families. The present study aimed to identify the psycho-social and economic impact of thalassemia major patients and their families.

METHODOLOGY

The study was conducted at the Thalassemia Centre of the Children's Hospital & the Institute of Child Health Multan,

st th Pakistan during the period of 1 March 2015 to 28 July 2015. A total of 500 Thalassemia major patients' parents were interviewed with the help of convenient sampling. Prior to conducting interview schedule, written and verbally consents were obtained from the subjects. Ethical approval was obtained from the Ethical Committee of The Children's Hospital & the Institute of Child Health (CH&ICH) Multan. Thalassemia major patients' parents were recruited and the other types of blood disorder patients' parents were excluded from the study such as A-plastic anemia, hemophilia, Acute Lymphoblastic Leukemia. The data were analyzed statistically by using the SPSS (Statistical Package for Social Sciences) version 20 which include percentage, frequency distribution, mean and standard deviation.

RESULTS

Figure - 1. Showed the distribution of respondents by their child's frequency of blood transfusion. Among the total respondents, 83(16.6%) of the respondents weekly visited to the Thalassemia Centers for the purpose of their children transfusion while 214(42.8%) of the respondents visited Thalassemia centers after fifteen days. 168(33.6%) of the respondents visited for their children transfusion on a monthly basis. Only 35(7.0%) respondents visited to the Thalassemia centers more than monthly.

FIGURE-1: FREQUENCY OF BLOOD TRANSFUSION

FIGURE-2: TYPE OF MARRIAGE

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DISCUSSION

The presence of a chronic disease like thalassemia places tremendous psychosocial and economic impact on patients and their families. The present study was designated to identify the psychosocial and economic impact of thalassemia major on patients' families. Thalassemia patients required regular

6attention throughout their life . It is a lifelong illness and has 7,8devastating impact on the patients and their family life . The

result of this study indicated that thalassemia major patient required blood twice a month to survive, which support the results of another study which were conducted in Karachi out of the total 221 patients 144(65%) required transfusion of blood

9,10twice a month . It is very difficult for the parents to arrange blood for their child twice in a month. The majority of the parents were illiterate and their monthly income was very low

11to bear the cost of the blood transfusion and medicines . Similar findings have been found in a previous study conducted

12by Sattari et al . Among the total respondents, 29(5.8%) have the knowledge that thalassemia is inherited disease while majority 471(94.2%) respondents were not having the knowledge that thalassemia is an inherited disease. First cousin marriages were found, one of the major reasons in most of the thalassemia major families which is evident in the study conducted in Lahore showing the result (56%) of the couples

13,14were first cousins and (19.8%) were relatives . In our study majority of the parents reported that they faced restriction to

18participate in different family gathering while the Aziz et al . conducted study in Bahawalpur showed this rate to be 27 percent. The disease has affected parental financial state badely, the majoirity of the affected children's families were poor and unable to afford the costly treatment. Similar findings have been found in a previous study conducted by Sattari et al. In our study child disease effects the conjugal relationships, while the study in Iran showed this rate to be 14.1 percent. 16 Most of the studies indicated that chronic disease like thalassemia places tremendous psychosocial and economic

17impact on the patient and the family . It was found that parents hesitated while talking about the disease with others. This was

8similarity to the study of Kuhurana et al . In our study, the majority of thalassemia major patients' parents knows

regarding chelation therapy because Thalassemia Centre is providing the medicines with the help of Punjab Zakat & Ushr Department, Government of Punjab so the condition of

18,19thalassemia patients were much better . One of the most important limitations of the study is that all the patients were registered in the Thalassemia Centre of the Children's Hospital & the Institute of Child Health Multan and may not be the representative of all thalassemia major patients of the Country. It is possible that those patients are registered in the other thalassemia centers may have a different psycho-social and economic issues.

CONCLUSION

Vast majority of the parents was facing the socio-psychological and financial problems due to the chronic disease. It is the time to understand the density of the problem and create the thalassemia awareness program to prevent thalassemia disease from Pakistan.

RECOMMENDATIONS

The study has recommended that measures to tackle and control the spread of thalassemia. The general awareness and the health education about thalassemia should be spread through print and electronic media.

The thalassemia centers are advised to take measures for the maintenance of proper records and cooperation of the data collection. The Hospitals and the patient welfare societies must cooperate with the researchers, because the biggest problem for the researchers in Pakistan is data collection. This is not only the responsibility of Thalassemia Welfare Societies and Government Health Institutions to control the disease. But it is also the responsibility of every carrier thalassemia especially it is the duty of carrier mothers during their pregnancy to visit concerned doctors regularly.

All the required medical equipment must be provided in every basic health units. Reasonable amount should be specified in the health budget by the government for the treatment of thalassemia and its prevention.

TABLE – II: STATEMENTS ABOUT IDENTIFYING PSYCHO-SOCIAL AND ECONOMIC IMPACT (n=500)

Std. DeviationMeanNStatements

Life is unsuccessful & messed-up because of child diseaseHesitation while talking about the disease with othersAggression because of child diseaseMental stress because of child diseaseParticipation in different family gatheringHomelessness feelings because of a Child diseaseAssistance of relatives in time of needA child disease effects conjugal relationshipFinancial burden of child treatment

500500500500500500500500500

3.102.701.871.053.391.423.463.501.01

.8571.000.967.2401.10.719.8501.17.155

Score: 4= To a Great Extent, 3= Some Extent, 2= Very Little, 1= Not at all

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ACKNOWLEDGEMENT

We would like to acknowledge with thanks the parents of Thalassemia children who cooperated with us to conduct this study.

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