Department of Community Medicine, Himalayan Institute of Medical Sciences, Dehradun, Uttarakhand, India
Abstract
BACKGROUND: Thalassemia is an inherited blood disorder which is one of the common genetic disorders among children that is increasing worldwide. AIM AND OBJECTIVE: This study aimed to identify clustering patterns among thalassemia‑affected families based on their well‑being, transfusion interval, and risk factors using two‑step cluster analysis (TCA). METHODS: The study design is a descriptive, analytical cross‑sectional study. The study sample consisted of 125 thalassemia children along with either one of the parents who referred to a thalassemia treatment center of a pediatric hospital in Chennai, Tamil Nadu. The parents and children were evaluated using the Ryff Psychological Well‑being Scale and Kidscreen Questionnaire respectively. Data were analyzed using SPSS version 16.0 software. RESULTS: Out of 125 parents, 86 were father (68.8%) and 39 were mother (31.2%). The mean age of parents was 38 years. Similarly, out of 125 thalassemia‑affected children, the mean age of children was 13 years. Six clusters were deducted from the TCA. Parents’ well‑being variable does not have discriminating power to form cluster division. Three cluster formations were meaningful. CONCLUSION: TCA, in this study, helps in finding the clusters of families with thalassemia‑affected children associated with poor well‑being and familial risks, which require attention for medical counseling.
Academic Paper (PDF): Relation between Children’s Well‑Being and Family Function in Children with Thalassemia Major in Isfahan in 2013. Available from: https://www.researchgate. net/publication/301741088_Relation_between_Children’s_ Well‑Being_and_Family_Function_in_Children_with_ Thalassemia_Major_in_Isfahan_in_2013. [Last accessed on 2017 Mar 31]. 2. Alpha Thalassemia. Available from: http://www.kidshealth.org/ en/parents/thalassemias.html. [Last accessed on 2017 Oct 09].
3. Bittles AH, MasonWM, Greene J, Rao NA. Reproductive behavior and health in consanguineous marriages. Science 1991;252:789‑94. 4. Borhany M, Pahore Z, Ul Qadr Z, Rehan M, Naz A, Khan A, et al. Bleeding disorders in the tribe: Result of consanguineous in breeding. Orphanet J Rare Dis 2010;5:23. 5. Weatherall DJ, Clegg JB. Inherited haemoglobin disorders: An increasing global health problem. Bull World Health Organ 2001;79:704‑12. 6. Ibrahim Aljeesh Y. Quality of life among thalassemia children patients in the Gaza strip. Am J Nurs Sci 2016;5:106. 7. Sengupta M. Thalassemia among the tribal communities of India. Internet J Biol Anthropol 2007;1:1‑9Available from: https://www. print.ispub.com/api/0/ispub‑article/5492. [Last accessed on 2017 Apr 15]. 8. Suresh Babu TV, Shantaram M. An Incidence of β‑thalassemia in South India – A review. Int J 2016;1:1‑6. Available from: http:// www.ijrpb.org/pdf/v3‑i5/1.pdf. [Last accessed on 2017 Mar 23]. 9. Kurian MA, Li Y, Zhen J, Meyer E, Hai N, Christen HJ, et al. Clinical and molecular characterisation of hereditary dopamine transporter deficiency syndrome: An observational cohort and experimental study. Lancet Neurol 2011;10:54‑62. 10. Wong’s Essentials of Pediatric Nursing. 9th ed. Available from: https://www.elsevier.com/books/wongs-essentialsof‑pediatric‑nursing/hockenberry/978‑0‑323‑08343‑0. [Last accessed on 2017 Oct 13]. 11. Keshvari M, Ebrahimi A, Abedi H. Relation between children’s well‑being and family function in children with thalassemia major in Isfahan in 2013. Glob J Health Sci 2016;8:170. 12. Caocci G, Efficace F, Ciotti F, Roncarolo MG, Vacca A, Piras E, et al. Health related quality of life in Middle Eastern children with beta‑thalassemia. BMC Blood Disord 2012;12:6. 13. Comparison of Quality of Life of Thalassemic Children with their Parents. Available from: https://www.researchgate.net/ publication/236033285_Comparison_of_quality_of_life_of_ thalassemic_children_with_their_parents. [Last accessed on 2017 Oct 13]. 14. Damon W. What is positive youth development? Ann Am Acad Pol Soc Sci 2004;591:13‑24. 15. Conduct and Interpret a Cluster Analysis. Statistics Solutions. Available from: http://www.statisticssolutions.com/ cluster‑analysis‑2/. [Last accessed on 2017 Oct 12]. 16. Field A. Discovering Statistics using SPSS: And Sex and Drugs and Rock “N” Roll. 3rd ed. Reprinted. Los Angeles, Calif.: Sage; 2011. p. 821. 17. Stevens JP. Applied Multivariate Statistics for the Social Sciences. 5th ed. New York: Routledge; 2009. p. 664. 18. Csizér K, Jamieson J. Cluster Analysis. In: The Encyclopedia of Applied Linguistics. Blackwell Publishing Ltd.; 2012. Available from: http://www.onlinelibrary.wiley.com/doi/10.1002/9781405198431. wbeal0138/abstract. [Last accessed on 2017 Oct 13]. 19. CDC. Complications/Treatment, Thalassemia, Blood Disorders, NCBDDD, CDC. Centers for Disease Control and Prevention; 2016. Available from: https://www.cdc.gov/ncbddd/thalassemia/ treatment.html. [Last accessed on 2017 Dec 22]. 20. Shah N, Mishra A, Chauhan D, Vora C, Shah NR. Study on effectiveness of transfusion program in thalassemia major patients receiving multiple blood transfusions at a transfusion centre in Western India. Asian J Transfus Sci 2010;4:94‑8. 21. Saraff A, Srivastava HC. Envisioning fatherhood: Indian fathers’ perceptions of an ideal father. Popul Rev 2008;47:7‑11. Available from: https://www.muse.jhu.edu/article/241362. [Last accessed on 2017 Dec 22]. 22. Swallow V, Macfadyen A, Santacroce SJ, Lambert H. Fathers’ contributions to the management of their child’s long‑term medical condition: A narrative review of the literature. Health Expect 2012;15:157‑75. 23. Prasomsuk S, Jetsrisuparp A, Ratanasiri T, Ratanasiri A. Lived experiences of mothers caring for children with thalassemia major in Thailand. J Spec Pediatr Nurs 2007;12:13‑23. 24. Mazzone L, Battaglia L, Andreozzi F, Romeo MA, Mazzone D. Emotional impact in beta‑thalassaemia major children following cognitive‑behavioural family therapy and quality of life of caregiving mothers. Clin Pract Epidemiol Ment Health 2009;5:5. 25. Aydinok Y, Erermis S, Bukusoglu N, Yilmaz D, Solak U. Psychosocial implications of thalassemia major. Pediatr Int 2005;47:84‑9. 26. 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;5:193‑203. 27. Shaligram D, Girimaji SC, Chaturvedi SK. Psychological problems and quality of life in children with thalassemia. Indian J Pediatr 2007;74:727‑30. 28. Telfer P, Constantinidou G, Andreou P, Christou S, Modell B, Angastiniotis M. Quality of life in thalassemia. Ann N Y Acad Sci 2005;1054:273‑82. 29. Politis C. The psychosocial impact of chronic illness. Ann N Y Acad Sci 1998;850:349‑54. 30. Kirk S, Glendinning C, Callery P. Parent or nurse? The experience of being the parent of a technology‑dependent child. J Adv Nurs 2005;51:456‑64. 31. Yamashita R, Sobota A, Trachtenberg F, Xu Y, Pakbaz Z, Odame I, et al. The impact of the child with thalassemia on the family: Parental assessment by child health questionnaire. Blood 2009;114:1371. 32. Ngim CF, Ibrahim H, Lai NM, Ng CS. A single centre study on birth of children with transfusion‑dependent thalassaemia in Malaysia and reasons for ineffective prevention. Prenat Diagn 2015;35:51‑9. 33. Ishaq F, Abid H, Kokab F, Akhtar A, Mahmood S. Awareness among parents of β‑thalassemia major patients, regarding prenatal diagnosis and premarital screening. J Coll Physicians Surg Pak 2012;22:218‑21. 34. Khurana A, Katyal S, Marwaha RK. Psychosocial burden in thalassemia. Indian J Pediatr 2006;73:877‑80. 35. Messina G, Colombo E, Cassinerio E, Ferri F, Curti R, Altamura C, et al. Psychosocial aspects and psychiatric disorders in young adult with thalassemia major. Intern Emerg Med 2008;3:339‑43. 36. Behdani F, Badiee Z, Hebrani P, Moharreri F, Badiee AH, Hajivosugh N, et al. Psychological aspects in children and adolescents with major thalassemia: A case‑control study. Iran J Pediatr 2015;25:e322. 37. Saxena A, Phadke SR. Feasibility of thalassaemia control by extended family screening in Indian context. J Health Popul Nutr 2002;20:31‑5.
Arulmani Thiyagarajan,.. , Bhagvandas M,.. , Kalpana Kosalram,.. and Sudip Bhattacharya,.. (2019). Well‑being, familial risk, and transfusion interval in thalassemia‑affected families: A two‑step cluster analysis. Journal of Education and Health Promotion, 9(5), 1-6.
MLA
Arulmani Thiyagarajan,.. , , Bhagvandas M,.. , , Kalpana Kosalram,.. , and Sudip Bhattacharya,.. . "Well‑being, familial risk, and transfusion interval in thalassemia‑affected families: A two‑step cluster analysis", Journal of Education and Health Promotion, 9, 5, 2019, 1-6.
HARVARD
Arulmani Thiyagarajan .., Bhagvandas M .., Kalpana Kosalram .., Sudip Bhattacharya .. (2019). 'Well‑being, familial risk, and transfusion interval in thalassemia‑affected families: A two‑step cluster analysis', Journal of Education and Health Promotion, 9(5), pp. 1-6.
CHICAGO
.. Arulmani Thiyagarajan, .. Bhagvandas M, .. Kalpana Kosalram and .. Sudip Bhattacharya, "Well‑being, familial risk, and transfusion interval in thalassemia‑affected families: A two‑step cluster analysis," Journal of Education and Health Promotion, 9 5 (2019): 1-6,
VANCOUVER
Arulmani Thiyagarajan .., Bhagvandas M .., Kalpana Kosalram .., Sudip Bhattacharya .. Well‑being, familial risk, and transfusion interval in thalassemia‑affected families: A two‑step cluster analysis. J Educ Health Promot, 2019; 9(5): 1-6.