A Mixed-method Study on Coping Mechanism among Caregivers of Thalassemia Patients Attending A Tertiary Care Hospital in West Bengal, India

Authors

  • Shaswati Biswas Postgraduate Doctor, Department of Preventive and Social Medicine, All India Institute of Hygiene and Public Health, Kolkata, India image/svg+xml Author https://orcid.org/0009-0000-9320-6726
  • Madhumita Bhattacharyya Professor, Department of Maternal and Child Health, All India Institute of Hygiene and Public Health, Kolkata, India image/svg+xml Author
  • Monalisha Sahu Associate Professor and Head, Department of Occupational Health, All India Institute of Hygiene and Public Health, Kolkata, India image/svg+xml Author
  • Rivu Basu Assistant Professor, Department of Preventive and Social Medicine, All India Institute of Hygiene and Public Health, Kolkata, India image/svg+xml Author
  • Bobby Paul Professor and Head, Department of Preventive and Social Medicine, All India Institute of Hygiene and Public Health, Kolkata, India image/svg+xml Author

DOI:

https://doi.org/10.51957/Healthline_726_2025

Keywords:

Coping Mechanism, Caregivers, Convergent-Parallel, Mixed Method study, Thalassemia

Abstract

Introduction: Thalassemia is a severe chronic anaemia. Caregivers face many stresses to provide the best possible medical care for their children. They develop a variety of coping mechanism. Objectives: To determine coping mechanism among caregivers of thalassemia patients and its associated factors; To explore challenges faced by caregivers of thalassemia patients. Methods: Institutional based observational study with convergent parallel mixed method study design was conducted in tertiary care hospital at OPD of Haematology Department in Kolkata, India. Total of 130 caregivers were selected through systematic random sampling for the quantitative strand who were interviewed using pre-tested questionnaire and the Coping Health Inventory for Parents-45 (CHIP). Additionally, seven in-depth interviews were conducted for the qualitative strand. Data were analysed using MS Excel 2019, SPSS v25, and QDA Miner Lite v3.0.2 with coding and thematic analysis after data saturation. Results: Among the caregivers 55 (42.3%) and 75 (57.7%) were mothers and fathers respectively with median age of 34 years. The median total score of the CHIP was 75, where 49% caregivers had adequate and 51% had inadequate coping skills. There was significant association between inadequate coping with poor social support (p=0.045) and frequent blood transfusion interval (p=0.020). The qualitative strand of this mixed-methods study identified five major themes-health problems, self-negligence, financial issues, familial issues and spiritual beliefs. Conclusion: Nearly half of the caregivers exhibited inadequate coping due to poor social support and shorter intervals between blood transfusions. Comprehensive support systems are crucial to improve their coping and overall quality of life.

References

1. Biswas B, Naskar NN, Basu K, Dasgupta A, Basu R, Paul B. An Epidemiological Study of the Quality of Life of Children With Beta-Thalassemia Major (β-TM) and Its Correlates in Kolkata, West Bengal, India. Cureus. 15 (3):e36888.

2. Ministry of Health and Family Welfare. (2016). Prevention and control of hemoglobinopathies in India: Thalassemias, sickle cell disease, and other variant hemoglobins – Guidelines on hemoglobinopathies 2016. Government of India

3. Hossain MS, Raheem E, Sultana TA, Ferdous S, Nahar N, Islam S, et al. Thalassemias in South Asia: clinical lessons learnt from Bangladesh. Orphanet J Rare Dis. 2017 May 18;12 (1):93. DOI: https://doi.org/10.1186/s13023-017-0643-z

4. Colah R, Italia K, Gorakshakar A: Burden of thalassemia in India: the road map for control . Pediatr Hematol Oncol J. 2017, 2:79-84. 10.1016/j.phoj.2017.10.002 DOI: https://doi.org/10.1016/j.phoj.2017.10.002

5. Gothwal VK, Bharani S, Reddy SP. Measuring Coping in Parents of Children with Disabilities: A Rasch Model Approach. PLoS ONE. 2015 Mar 2;10 (3):e0118189. DOI: https://doi.org/10.1371/journal.pone.0118189

6. Sahu S, Agrawal A, Shrivastava J, Tonk S. Psychiatric disorders and caregiver burden in children with transfusion dependent β-thalassaemia and their caregivers. World J Clin Pediatr. 2023 Jun 9;12 (3):125–32. DOI: https://doi.org/10.5409/wjcp.v12.i3.125

7. Saldanha SJ. Stress and coping among parents of children having thalassemia. Int J Sci Res. 2013;4 (7).

8. Salehi S, Morovati S. Coping behaviors in families with children suffering from thalassemia major and evaluating the implementation effect of nursing intervention on these behaviors Int J Med Res Health Sci. 2016;5:58–63

9. Snezana C, Vucic V, Mihaljevic O, Djordjevic J, Colovic S, Radovanovic S, et al. Social support score in patients with malignant diseases—with sociodemographic and medical characteristics. Front Psychol. 2023 Jun 1;14:1160020. DOI: https://doi.org/10.3389/fpsyg.2023.1160020

10. Kermansaravi F, Najafi F, Rigi S. Coping Behaviors in Parents of Children with Thalassemia major. Med - Surg Nurs J [Internet]. 2018 [cited 2024 Jan 28];7 (1). Available from: https://brieflands.com/articles/msnj-81173#abstract

11. Yazdi K. Psychosocial, social and financial problems with coping strategies among families with thalassemic patients. J Gorgan Univ Med Sci. 2007;9 (2):71–5.

12. Nabavian M, Cheraghif_ F, Shamsaei F, Tapak L, Tamadoni A. A Qualitative Study Exploring the Experiences of Mothers Caring for Their Children with Thalassemia in Iran. Ethiop J Health Sci [Internet]. 2021 Nov 1 [cited 2024 Jan 25];31 (6). Available from: https://www.ajol.info/index.php/ejhs/article/view/219382 DOI: https://doi.org/10.4314/ejhs.v31i6.25

13. Padhy, P. & Kumar, N. Understanding resilience in chronically Ill children: Parental perspectives on strengths, difficulties and fostering resilience in children with thalassemia major IJHW. 2017 Oct 26;8(7):588-593

14. McCubbin, H.I., McCubbin, M.A., Patterson, J.M., Cauble, A.E., Wilson, L.R. & Warwick, W. (1983). CHIP-Coping Health Inventory for Parents: An Assessment of Parental Coping Patterns in the Care of the Chronically Ill Child. Journal of Marriage and the Family, 45 (2), 359-370. doi: 10.2307/351514. DOI: https://doi.org/10.2307/351514

15. Oslo Social Support Scale (OSSS-3) – EMERGE [Internet]. [cited 2024 Dec 20]. Available from: https://emerge.ucsd.edu/r_1mq2f0ksb7qyidj/

16. National Family Health Survey (NFHS-5), 2019-21, India Report. Ministry of health and Family Welfare, Government of India. 2022.

17. Javalkar SR, H. S, B. Davalagi S, G. S. V. Socio economic status assessment in India: history and updates for 2024. Int J Community Med Public Health. 2024 Feb. 29;11(3):1369-77. doi:10.18203/2394-6040.ijcmph20240648. DOI: https://doi.org/10.18203/2394-6040.ijcmph20240648

Downloads

Published

21-01-2026

Issue

Section

Original Articles

Categories

How to Cite

1.
Biswas S, Bhattacharyya M, Sahu M, Basu R, Paul B. A Mixed-method Study on Coping Mechanism among Caregivers of Thalassemia Patients Attending A Tertiary Care Hospital in West Bengal, India. Healthline. 2026;16(4):261-268. doi:10.51957/Healthline_726_2025