PAKISTAN PEDIATRIC JOURNAL

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1 Vol. 40(4) December, 2016 Print: ISSN Online: ISSN X PAKISTAN PEDIATRIC JOURNAL A JOURNAL OF PAKISTAN PEDIATRIC ASSOCIATION Indexed in EMBASE/Excerpta Medica & Index medicus WHO IMEMR

2 ORIGINAL ARTICLE Assessing Parental Knowledge About Thalassemia KAMRAN ISHFAQ, SALMAN BIN NAEEM, JOHAR ALI, TANVEER AHMAD,, SAFIA ZAINAB Pak Pediatr J 2016; 40(4): Correspondence to: Kamran Ishfaq Assistant Professor, Department of Sociology, Bahauddin Zakariya University Multan, Pakistan dr.kamran@bzu.edu.pk Received: 28 th Nov. 2015; Accepted for publication: 28 th Oct INTRODUCTION ABSTRACT Objectives: To assess the parental knowledge about thalassemia. Study design: A descriptive study. Thalassemia is an inherited blood disorder which is transffered from parents to their children. Patients with thalassemia major are unable to produce red cells in their body and they are dependent on regular blood transfusion for their rest of life 1. Thalassemia is a preventable disease, however, it poses a serious health problem in Pakistan. The gene frequency is 5-6% which means that over 5000 Thalassemia major children are born every year in Pakistan 2,3. Because of Place & duration: The study was carried ouconducted at the Thalassemia Centre of The Children s Hospital & the Institute of Child Health (CH&ICH) Multan, Pakistan during 1 st January 2015 and 30 th July Methodology: The Data was collected from the 120 registered Thalassemia major patients parents at the Thalassemia Centre at the CH&ICH, Multan. The participants of the study were the parents of the enrolled thalassemia children in the center. The data was collected using a structured interview schedule. Collected data analysed using descriptive statistics and presented in frequency and percentage. Results: The majority of the respondents 107 (89.2%) out of 110 believed that thalassemia is a blood disease, which can be identified by a blood test. Sixty (50%) respondents believed that thalassemia is an inherited disorder, but 60(50%) respondents either had poor or no knowledge about the disease. Alarmingly, 35(29.2%) respondents were of the opinion that the patient can survive if left untreated and another 55 (45.8%) respondents thought thalassemia can be treated with medicines. Conclusion: The results of the study concluded that parents knowledge of disease, treatment and prevention was inadequate. The study recommends the need of organizing seminars, public lectures for both thalassemic families and general public in order to enhance their knowledge regarding thalassemia disease and prevention. Key words: awareness, knowledge, parents, thalassemia. inadequate awareness campaigns, the number of thalassemia major patients are increasing. Unluckily, the majority of the parents have no previous knowledge of them being Thalassemia minor and a source of transmitting Thalassemia genes among their children. In the developing Countries, particularly, Asia and Mediterranean Countries, prevelance of thalassemia is quite high 4. There is no Thalassemia disease registry in Pakistan and the knowledge about the prenatal diagnosis and premarital screening among people is insufficient due to low literacy rate,

3 Assessing Parental Knowledge About Thalassemia 233 societal elements, religious perspectives and cultural boundaries 5. Countries like Iran, Turkey and Cyprus implemented the strategy of preventing the birth of Thalassemia major children. In Iran, the Government has made blood test compulsory for premarital screening and genetic councilling is given to all couples. This policy has produced good results in preventing Thalassemia major. In Pakistan a workable strategy is required to prevent the birth of thalassemia major patients. Studies conducted previously reported that thalassemia leaves devasting effects on patients families 6-8. Previously, literature lacks on assessing the knowledge of parents having a thalassemia child, particulary, in Southern Punjab. Thefore, present study is conducted with an aim to report the parental knowledge and awareness about thalassemia. The findings of the study will be useful for medical practicioner, social workers, philanthropists, thalassemic prevention center of the Govt. of the Punjab, and policy makers, in order to learn about the knowledge and awareness among the parents of thalassemia children regarding thalassemia. METHODOLOGY The study was conducted at the Thalassemia Centre of the Children s Hospital & the Institute of Child Health (CH&ICH) Multan, Pakistan during 1 st January 2015 and 30 th July The participants of the study were the parents (mothers and fathers) of the enrolled thalassemia children in the center. Parents of the thalassemia children who were not enrolled in the thalassemic center of the children s hospital were excluded from the study. The data was collected using a structured interview schedule. Parents of thalassemic children were explained about the study and Informed consents were obtained. Participants were encouraged to ask the additional information relating to interview guide. The respondents voluntarily participated in this study. The structured interview was divided into two parts, the first part included the questions relating to demographic information such as age, sex, education, ethnic background and income, whereas the second part comprised of questions related to parental knowledge about nature, treatment and prevention of thalassemia. The interview guide was discussed with two senior doctors (>8 years experience) working at the Thalassemia Centre. Data was analyzed by using the statistical package for social sciences (SPSS) version 20. RESULTS Demographic Information: Of 120 respondents, majority 90 (75%) of respondents were female while 30 (25%) were male. Majority of the respondents 62 (51.6%) were of age years, followed by 34 (28.3%) in the age group of years, 14 (11.6%) were in years, 6 (5%) were in years and only 4 (3.5%) were in the age group of years. In our cohort, majority of respondents were seraiki 88 (73.3%), followed by Punjabi 25 (20.8%), urdu speaking 5 (4.2%), and pathan 2 (1.7%). As for the education is concerned, literate and illiterate were equal with criteria for labeling illiterate 60 (50%) respondents in each group. The 62 (51.7%) registered patients were from rural areas and almost the same number of respondents 58 (48.3%) were from urban areas. In our cohort, the majority of the respondent s monthly income was less then 10,000 PKR, while 23 (19.2%) were between 10,000 to 20,000 PKR, 14 (10.9%) were between 20,000 to 30,000 PKR, and only 8 (6.7%) respondent s income were more than 30,000 PKR. TABLE 1: Demographic information of the respondents (n=120) Variables Frequency (%) Gender Male 30 (25.0) Female 90 (75.0) Age (51.6) (28.3) (11.6) (5.0) (3.5) Ethnicity Saraiki 88 (73.3) Urdu 05 (4.2) Pathan 02 (1.7) Punjabi 25 (20.8) Education Literate 60 (50) Illiterate 60 (50) Residential Area Rural 62 (51.7) Urban 58 (48.3)

4 234 Ishfaq K, Ahmad T, Ali SBNJ, Zainab S Occupation Unemployed 08 (6.7) Business 09 (7.5) Private 16 (13.3) Govt. 11 (9.2 Laborer 76 (63.3) Monthly Income < (22.5) (40.8) (11.7) (7.5) (6.7) (4.2) > (6.7) Respondents were asked a set of twelve statements relating to thalassemia in order to assess their knowledge regarding the disease. The majority of the respondents 110 (91.7%) believed that thalassemia is a blood disease and 103 (85.8%) believed that thalassemia can pass onto their child thoruhg a gene. However, 60 (50%) respondents believed that thalassemia is an inherited disorder, but 61 (50.8%) respondents believed that there are different kinds of thalassemia. Majority 86 (71.7%) of the respondents was of the opinion that a child with thalassemia major have a higher risk of illness or infection. Alarmingly, 55 (45.8%) respondents were of the opinion that the thalassemia can be treated with surgery, but 35 (29.2%) respondents were of the opinion that thalassemia can be removed with appropriate treatment. Majority 72 (60%) of the respondents believed that thalassemia is a contagious disease, and 64 (53.3%) believed that if a child is thalassemia minor, his brother or sister have it, too. However, majority 71 (59.2%) indicated that blood transfusion is the only treatment mode of thalassemia major, however, 36 (30%) reported that they do not know about it, and 13 (10.8%) was of the opinion that blood transfusion is not the only treatmenet. Fifty-nine (49.2%) respondents believed that bed rest is a treatment mode for thalassemia, and 58 (48.3%) indicated that thalassemia is caused ude to some allergy (table 2). TABLE 2: Parental knowledge about thalassemia (n=120) Statements Correct Incorrect Don t Know n (%) n (%) n (%) Is Thalassemia a disease of the blood? 110 (91.7) 6 (5.0) 4 (3.3) Is Thalassemia an inherited disorder? 60 (50.0) 52 (43.3) 8 (6.7) Can Thalassemia pass onto your child through a gene? 103 (85.8) 6 (5.0) 11 (9.2) Can a child with Thalassemia major have a higher risk of illness 92 (76.6) 25 (20.9) 3 (2.5) or infection? Can appropriate treatment remove Thalassemia major? 29 (24.2) 81 (67.5) 10 (8.3) Can Thalassemia be treated with surgery? 41 (34.2) 76 (63.3) 3 (2.5) Is a Thalassemia major contagious disease? 68 (56.7) 31 (25.8) 21 (17.5) If a child has Thalassemia minor, can his brother or sister have it, 87 (72.5) 16 (13.3) 17 (14.2) too Are there different kinds of Thalassemia? 61 (50.8) 24 (20.0) 35 (29.2) Is bed rest a treatment mode for Thalassemia? 46 (38.3) 61 (50.8) 13 (10.9) Is Thalassemia caused due to some allergy? 43 (35.8) 22 (18.3) 55 (45.9) Is blood transfusion only treatment mode of Thalassemia major patients? DISCUSSION Prevention is the only option in eradicating thalassemia from Pakistan. Many countries, such a Turkey, Greece, Iran did combat with thalassemia through preventive strategies. 74 (61.7) 13 (10.8) 33 (27.5) Although, in Punjab, thalassemia prevention programs is undergoing to increase the awareness, especially amongst the families of affected thalassemic children and general public in order to eradicate the thalassemia. But this program could not produce the required results

5 Assessing Parental Knowledge About Thalassemia 235 because of many reasons, (i) ineffective strategies, (ii) lack of community assessments and links with the community influential people, (iii) no central registry of thalassemia patients, as well as (iv) inadequate involvement of religious scholars. Previously, many studies 1,16-18 around the world carried out to assess the knowledge of the patients regarding Thalassemia. These studies helped to assess parental knowledge about the disease. Since Thalassemia is inherited and preventable disease, parental role in its eradication is essential; however, parents can only play their role if they have pre-hand knowledge about the disease. They can be influential in their families to counsel the other members of the family to get preventive measures (e.g., pre-marital screening, extended family screening) done before giving a birth to a child. In the present study, we assessed parental knowledge about thalassemia, their ethnic background, level of education and their monthly income. These variables are important to measure to help design a proper strategy addressing the thalassemia disease. The findings of this study indicated that the parental knowledge regarding thalassemia s diagnosis, treatment and prevention is inadequate, but their knowledge about child with Thalassemia major have a higher risk of illness or infection is adequate. Similar, results have been reported in other studied conducted by Maheen et al 17, and Ali, et al 18, in which they have reported the adequate knowledge of thalassemia patients regarding a disease as well as many other studies reported inadequate parental knowledge about thalassemia The results of our study found that majority 75% of the respondents who visited the Thalassemia center for a transfusion of their children were mothers. The prevalence of Thalassemia noted differently among various local languages speaking groups. Thalassemia major frequency rate was more prevalent among Saraiki speaking with 73.3%, while the prevalent among Punjabi speaking was 20.8%, urdu and Pashtu speaking were noted as 4.2% and 1.7% respectively. Previous study conducted in Karachi also indicated similar results, a group of Pashtu language was the most 22.7% affected Thalassemia ethnic group, followed by Saraiki 18.6%, Urdu, 14.5 %, Balochi and Sindhi with 11.0% each 14. The results of our study reported that the parental knowledge about considering Thalassemia as an inherited disease found better as compared to a study conducted at Civil Hospital, Karachi in which only 15 % parents had awareness about the nature of disease 17. CONCLUSION The results of the study concluded that parents were aware about thalassemia disease but their knowledge to disease treatment and prevention was inadequate. The study recommends the need of organizing seminars, public lectures for both thalassemic families and general public in order to enhance their knowledge regarding thalassemia disease and prevention. The awareness and preventive message and seminars can be delivered/organized more successfully by involving lady health care workers, community health care workers along with social health care workers and media Author s affiliations Kamran Ishfaq, Johar Ali, Tanveer Ahmad, Safia Zainab Department of Sociology, BZU, Multan Salman Bin Naeem DLIS, The Islamia University of Bahawalpur REFERENCES 1. Ishaq F, Hasnain, Abid F, Akhtar A, Mehmood S. Awareness among parents of β-thalassemia major patients, regarding prenatal diagnosis and premarital screening. J Coll Physicians Surg Pak. 2012;22(4): Rehman S.U, Batool S, Qadir R. Socio-economic status of impact thalassaemia child on families of Faisalabad District. Pak J Appl Sci. 2002;2(2): Weatherall DJ. Keynote address: the challenge of Thalassemia for the developing countries. Ann N Y Acad Sci. 2005;1054, Chattopadhyay S. Rakter dosh corrupting blood: the challenges of preventing thalassemia in Bengal, India. Soc Sci Med.2006;63(10):2661 s Zaman Q, Salahuddin M. Association between the Education and Thalassaemia: A Statistical

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