Coping strategy among Parents of children with thalassemia in India
Keywords:
Thalassemia, Coping Strategy, Structured Teaching program, children with ThalassemiaAbstract
Background: In a country like India, where over 40 million people carry the gene for thalassemia major and over 10,000 children are born each year with the severe form of thalassemia, 80-90% fail to survive beyond the age of ten. Most of thalassaemic children with thalassemia if not treated properly, have the difficulty in daily activities. Yet, there is a cure for thalassemia. Bone marrow transplantation and stem cell transplantation is very costly which is beyond the reach for majority of affected families, even if they have a donor in the family. Long term supportive care with transfusion and iron chelation is beyond the means of most families. Hence Families with thalassemic children often experience difficulties in adaptation to the illness.
Objective of the study were to assess and compare the coping strategy of parents in experimental and control group regarding care of children with thalassemia; and to determine the association of coping strategy of parents with selected variables.
Methods: A quasi-experimental study following pretest post-test research design was conducted among 107 parents and their thalassaemic children (54 in experimental and 53 in control group) in two randomly selected hospitals in Delhi. Structured Teaching Program (STP) comprised of two programme i.e. STP- I includes the items related to knowledge whereas STP-II focused on the psychological problem of parents. Pretest and post-test coping strategy of parents (day 30 and day 60) were assessed using a valid and reliable coping checklist.
Results: The mean posttest coping strategy scores of parents in experimental group was higher than control group as on day 60 (E=50.61, C=47.88). The computed t(106)= 2.14 on day 60 was statistically significant at 0.05 level of significance. The area wise analysis showed effectiveness of coping in the area of planful problem solving, seeking social support, self control. There was no significant association found between the post-test coping strategy score of parents with selected variables except the family history of thalassemia.
Conclusion: Structured teaching Program was effective in improving the adaptive coping strategy among parents of Children with Thalassemia but unfortunately no literature or study was found to explain these finding.
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References
Marcdale Karan, Kliegman Robert M, Jeson Hall B, Behrman Richard E. Nelson Essentials of Pediatrics. 6th edition, 2011,555-582.
Mohanty D., Colah R. B., Gorakshakar A. C., Patel R. Z., Master D. C., Mahanta J.et al, Prevalence of β-thalassemia and other haemoglobinopathies in six cities in India: a multicentre study. J Community Genet. 2013 January; 4(1): 33–42.
Madan Nishi, Sharma Satendra, S. K. Sood, Roshan Colah1, (Late) H. M. Bhatia, Frequency of β-thalassemia trait and other hemoglobinopathies in northern and western India, Indian Journal of Human Genetics , January-April 2010 Volume 16 Issue 1
Tahir Hira, Shahid Syeda Amna, Mahmood Khawaja Tahir. Complications in Thalassaemia Patients Receiving Blood Tranfusion. J Biomed Sci and Res., Vol 3 (1), 2011,339-346
Jaouni soad khalil al jaouni. Survival and disease complication of thalassemia major: experience of 14 years at king Adduleziz university hospital, Jeddah, KSA. JKAU: med. Sci vol. 17 no- 1, pp:19-28.
Talsania Shrenik, Talsania Niti , Nayak Himanshu A Cross Sectional Study Of Thalassemia In Ahmedabad City, Gujarat. (Hospital based) ,h e a l t h l i n e ISSN 2229-337X Volume 2 Issue 1 January-June 2011
GM Mokhtar, M.Godallah, NH EI Sherif, HT Ali. Morbidities and mortality in transfusion- dependent beta thalassemia patients (single centre experience). Pediatr. Hematplogy Oncol.2013; 30(2):93-103
Tsiantis J, Dragonas T, Richardson C, Anastasopoulos D, Masera G, Spinetta J. Psychosocial problems and adjustment of children with beta-thalassemia and their families. Eur Child Adolesc Psychiatry. 1996 Dec;5(4):193-203.
M. Karimi, S.Johari,N Cohon. Attitude toward prenatal diagnosis for beta- thalassemia major and medical abortion in Southern Iran.Hemoglobin 2010;34(1): 49-54
Pauisri Surangrhut, Saksiriwuttho Piyamas, Ratanasiri Thawalwong .Knowledge and attitude of pregnant women at risk for having a fetus with severe thalassemia after genetic counseling at Srinagarind Hospital.Thai Journal of obstetrics and gynaecology. 2011.Vol.19.No.4
Al Kindi R, Al Rujaiibi S, Al Kendi M. Knowledge and Attitude of University Students Towards Premarital Screening Program. Oman Med J 2012 July; 27(4):291-296
Gold Beck L., Baving A, Kohne E. Psychosocial aspects of beta thalassemia;distress,coping and adherence. Klin Pediatric;2000;212(5):254-9
Patel ashwin p, naik madhuben r, shah nilam m, sharma narmadeshwar p, parmar prakash . prevalence of common hemoglobinopathies in Gujarat: an analysis of a large population Screening program, national journal of community medicine jan-march 2012, vol 3 issue 1
Verma ishwar c, Saxena Renu, Kohli sudha. Past, present and future scenario of thalassemia care and control in India. Indian J med res. 134, oct 2011, pp 507-521.
Koutelekos John, Haliasos Nikolaos. Depression and Thalassemia in children, adolescents and adults. Health Science Journal.2013;7 (3); 239-249
Gorakshakar Ajit C, Colah Roshan B. Cascade screening for β-thalassemia: A practical approach for identifying and counseling carriers in India; Indian Journal of Community Medicine: 2009;34;4:354-356Wong Li Ping, George Elizabeth, Tan Jin- Ali Mary Anne. A holistic approach to education programs in thalassemia for a multi-ethinic population: consideration of perspectives, attitudes & perceived needs. J Community Genet.June 2011;2(2):71s-79
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