Published: 2021-05-25

Knowledge, burden and coping strategies among caregivers of thalassemic children attending thalassemia day care centre of selected hospital, Jodhpur

Pushpa ., Raj Rani, Mamta Nebhinani


Background: Thalassemia is a blood disorder characterized by the reduction or absence in the synthesis of the globin chains of hemoglobin. Nearly 10% of children suffering from Thalassemia are being registered as new cases every year in Rajasthan. The aim of the study was to assess knowledge, burden and coping strategies among caregivers of thalassemic children.

Methods: Data were collected from 150 caregivers of thalassemic children selected by purposive sampling technique at Umaid hospital, Jodhpur, Rajasthan. Data collection tool included self-structured knowledge questionnaire, Burden scale and Structured Brief COPE scale.

Results: Equal numbers 36% and 35.33% of caregivers were having poor and good level of knowledge respectively, knowledge levels of the subjects were found to have significant association with monthly family income (p value=0.000), education (p value=0.007) and place of living (p value=0.000). 74.3% of caregivers reported moderate level of burden. Burden levels of the subjects were found to have significant association with Monthly family income (p value=0.000), and place of living (p value=0.000). Adaptive coping strategies were more evident as compare to maladaptive strategies. 

Conclusions: Knowledge was significantly lacking regarding diet management, benefits of exercise, role of iron chelation therapy etc. Continuous care of children put caregivers under moderate level of burden. There is great need to plan, implement health awareness programme for these caregivers.



Burden, Caregivers, Coping strategies, Knowledge, Thalassemia

Full Text:



Yasmeen A. Time for a national policy on thalassemia, 2017. Available at: Accessed on: 23 March 2021.

Basu M. Knowledge, attitude and practice about thalassemia. J of Preventive Med and Holistic Health. 2015;1(1):5-12.

Ghosh S. Thalassemia in India, 2017. Available at: Accessed on: 23 March 2021.

Ali SI. Thalassemia in India, 2015. Available at: Accessed on: 23 March 2021.

Inamdar S, Inamdar M, Gangrade A. Stress level among caregivers of thalassemia patients. National J of Community Med. 2015;6(4):579-82.

Yengil E, Acipayam C, Kokacya MH, Kurhan F, Oktay G, Ozer C. Anxiety, depression and quality of life in patients with beta thalassemia major and their caregivers. Int J Clin Exp Med. 2014;7(8):2165-72.

Pouraboli B, Abedi HA, Abbaszadeh A, Kazemi M. Self-care in Patient with Major Thalassemia: A Grounded Theory. J Caring Sci. 2017;6(2):127-39.

Mashayekhi F, Jozdani RH, Chamak MN, Mehni S. Caregiver Burden and Social Support in Mothers with β-Thalassemia Children. Global J of Health Sci. 2016;8(12):206-12.

Hashemi F, Naderi DA, Sharif F, Karimi M, Zare N. Effect of coping strategies training on its use by thalassemia major adolescents: a randomized controlled clinical trial. Int J Community Based Nurs Midwifery. 2015;3(1):67-74.

Biswas B, Naskar NN, Basu R, Dasgupta A, Paul B, Basu K. Knowledge of the Caregivers of Thalassemic Children Regarding Thalassemia: A Cross-sectional Study in a Tertiary Care Health Facility of Eastern India. Iraqi J of Hematol 2018;7(2):49-54.

Vashist M, Abrol A. Beta thalassemia in India: Current status and the challenges ahead. International J of Pharmacy and Pharmaceut Sci. 2014;6(4):28-33.

Creative research system. Sample Size Formulas for our Sample Size Calculator, 2019. Available at: https://www.surveysystem.comsample-size. Accessed on: 23 March 2021.

Yusoff N, Low WY, Yip CH. Reliability and validity of the Brief COPE Scale among women with breast cancer undergoing treatment of adjuvant chemotherapy: a Malaysian study. Med J Malaysia. 2010;65(1):41-4.

Goyal JP, Hpapani PT, Gagiya H. Thalassemia awareness among parents of children with thalassemia. International J of Med Sci and Public Health. 2015;4(10):1356-9.

Karimzaei T, Masoudi Q, Shahrakipour M, Navidiyan A, Jamalzae AA, Zoraqi BA. Knowledge, Attitude and Practice of Carrier Thalassemia Marriage Volunteer in Prevention of Major Thalassemia. Global J Health Sci. 2015;7(5):364-70.

Maheen H, Malik F, Siddique B, Qidwai A. Assessing Parental Knowledge About Thalassemia in a Thalassemia Center of Karachi, Pakistan. J Genet Couns. 2015;24(6):945-51.

Dehkordi AH, Heydarnejad MS. Effect of booklet and combined method on parents' awareness of children with beta-thalassemia major disorder. J Pak Med Assoc. 2008;58(9):485-7.

Shaligram D, Girimaji SC, Chaturvedi SK. Psychological problems and quality of life in children with thalassemia. Indian J Pediatr. 2007;74(8):727-30.

Miskam HM, Juhari R, Yaacob SN. stress and quality of life among mothers with thalassemic children in Malaysia. International J Stud on Child, Wom, Elder Disabl. 2017,1:176-84.

Saxsena A, Sharif M, Siddiqui S, Singh S. Knowledge, Practice and experience of parents with a thalassemic child. International J of Contemp Ped. 2017;4(5):1630-33.