Caregiver Burden, Spirituality, and Psychological Well-Being of Parents Having Children with Thalassemia


The research determined the relationship of caregiving burden, spirituality and psychological well-being of parents of Pakistani thalassemic patients in a crosssectional research design. The sociodemographic form, Montgomery–Borgatta burden measure (Montgomery et al. in Who should care for the elderly? An east-west value divide. World Scientific, River Edge, pp 27–54, 2000), Multidimensional Measure of Islamic Spirituality (Dasti and Sitwat in J Muslim Ment Health 8(2):47–67, 2014. doi:10.3998/jmmh.10381607.0008.204) and Ryff Scale of Psychological Well-being (Ryff in J Pers Soc Psychol 57(6):1069–1081, 1989. doi:10.1037/0022-3514.57.6.1069) were administered on a sample of 80 parents (32 fathers and 48 mothers) recruited from different Thalassemic Centers of Lahore city, Pakistan. Data were analyzed through correlation and mediational analyses. Results indicated that the caregiver burden was negatively correlated with the psychological well-being and the domains of spirituality, while the psychological well-being and spirituality were positively correlated. We identified that the caregiver burden has direct effect on the psychological well-being of the parents and it influences the psychological well-being through the pathway of the two domains of spirituality, i.e., self-discipline and meanness–generosity. These results highlighted the role of spirituality upon the psychological well-being of caregivers, which could be utilized to prevent pathological influences (such as hard feelings, hopelessness, depressed mood, anxiety, and relationship problems) of caregiver burden and enhance psychological well-being through spiritual counseling. Caregivers can work on their well-being and burden by disciplining their lives and forgoing hard feelings toward others.

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  1. Ali, S., Sabih, F., Jehan, S., Anwar, M., & Javed, S. (2012). Psychological distress and coping strategies among parents of beta-Thalassemia major patients. International Conference on Clean and Green Energy, 27, 124–128. Retrieved from

  2. Ansari, S. A. (2010). Cross validation of Ryff scales of psychological well-being: Translation into Urdu language. Pakistan Business Review, 12(2), 244–259.

    Google Scholar 

  3. Atkin, K., & Ahmad, W. I. U. (2000). Family care-giving and chronic illness: How parents cope with a child with a sickle cell disorder or thalassaemia. Health and Social Care in the Community, 8(1), 57–69. doi:10.1046/j.1365-2524.2000.00211.x.

    Article  PubMed  Google Scholar 

  4. Aydin, B., Yaprak, I., Akarsu, D., Okten, N., & Ulgen, M. (1997). Psychosocial aspects and psychiatric disorders in children with Thalassemia major. Acta Paediatrica Japonica, 39(3), 354–357. Retrieved from

  5. Boniwell, I. (2006). Positive psychology in a nutshell. Great Britain: Personal Well-being Centre.

    Google Scholar 

  6. Caocci, G., Efficace, F., Ciotti, F., Roncarolo, M. G., Vacca, A., Piras, E., et al. (2012). Health related quality of life in Middle Easternchildren with beta-Thalassemia. BMC Blood Disorders, 12(6), 1–7. Retrieved from

  7. Chang, B. H., Noonan, A. E., & Tennstedt, S. L. (1998). The role of religion and spirituality in coping with caregiving for disabled elders. The Gerontologist, 38(4), 463–470. Retrieved from

  8. Chappell, N. L., & Reid, R. C. (2002). Burden and well-being among caregivers: Examining the distinction. The Gerontologist, 42(6), 772–780. Retrieved from

  9. Chou, K., Chu, H., Tseng, C., & Lu, R. (2003). The measurement of caregiver burden. Journal of Medical Sciences, 23(2), 73–82.

  10. Cohen, A. B. (2002). The importance of spirituality in well-being for Jews and Christians. Journal of Happiness Studies, 3, 287–310. doi:10.1023/A:1020656823365.

    Article  Google Scholar 

  11. Dasti, R., & Sitwat, A. (2014). Development of a multidimensional measure of islamic spirituality (MMIS). Journal of Muslim Mental Health, 8(2), 47–67. doi:10.3998/jmmh.10381607.0008.204.

    Article  Google Scholar 

  12. Diong, S. M., & Bishop, G. D. (1999). Anger expression, coping styles, and well-being. Journal of Health Psychology, 4(1), 81–96. doi:10.1177/135910539900400106.

    CAS  Article  PubMed  Google Scholar 

  13. Ghodekar, S. R., Grampurohit, N. D., Kadam, S. S., &Thorat, R. M. (2010). Thalassemia: A review. International Journal of Pharma Research and Development, 2(10), 101–108. Retrieved from

  14. Heo, G. J. (2012). The role of religious coping in Alzheimer’s disease caregiving. Journal of Applied Gerontology. doi:10.1177/0733464811433484.

    PubMed  Google Scholar 

  15. Howell, D. C. (2010). Statistical methods for psychology (7th ed.). Canada: Wadsworth Cenage Learning.

  16. Ivtzan, I., Chan, C. P. L., Gardner, H. E., & Prashar, K. (2011). Linking religion and spirituality with psychological well-being: Examining self-actualization, meaning in life, and personal growth initiative. Journal of Religion and Health, 48, 1–15. doi:10.1007/s10943-011-9540-2.

    Google Scholar 

  17. Johansson, F. G., Lachica, E. M., Dickson, J. M. F., & Kennedy, M. J. (2004). Psychological distress, fatigue, burden of care, and quality of life in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation. Oncology Nursing Forum, 31(6), 1161–1169. Retrieved from

  18. Kausar, R., & Zehra, S. K. (2009). Stress, anxiety and depression in mothers of children with beta Thalassemia. Surgimed Medical Dental Journal, 1(1), 24–28.

    Google Scholar 

  19. Kim, K. S., Kim, B. J., Kim, K. H., Choe, M. A., Myungsun, Y., Yang-Sook, H., et al. (2007). Subjective and objective caregiver burden in Parkinson’s disease. Journal of Korean Academy of Nursing, 3(2), 242–248. Retrieved from

  20. Kubany, E. S., Bauer, G. B., Muraoka, M. Y., Richard, D. C., & Read, P. (1995). Impact of labelled anger and blame in intimate relationships. Journal of Social and Clinical Psychology, 14, 53–60. doi:10.1521/jscp.1995.14.1.53.

    Article  Google Scholar 

  21. Lee, S. A., & Dow, G. T. (2011). Malevolent creativity: Does personality influence malicious divergent thinking? Creativity Research Journal, 23(2), 73–82. doi:10.1080/10400419.2011.571179.

    CAS  Article  Google Scholar 

  22. Mishra, G. (2007). Nature and nurture of well-being. In K. Ravichandra, C. Beena, & R. Regani (Eds.), Psychological well-being: Correlation and intervention studies (p. 1). New Delhi: Global Vision Publishing House.

    Google Scholar 

  23. Montgomery, R. J. V., Borgatta, E. F., & Borgatta, M. L. (2000). Societal and family change in the burden of care. In W. T. Liu & H. Kendig (Eds.), Who should care for the elderly? An east-west value divide (pp. 27–54). River Edge, NJ: World Scientific.

    Google Scholar 

  24. Nash, K. B. (1990). A psychosocial perspective: Growing up with Thalassemia, a chronic disorder. Annals of the New York Academy of Sciences, 612, 442–450. doi:10.1111/j.1749-6632.1990.tb24331.x.

    CAS  Article  PubMed  Google Scholar 

  25. Phillips, A. C., Gallagher, S., Hunt, K., Der, G., & Carroll, D. (2009). Symptoms of depression in non-routine caregivers: The role of caregiver strain and burden. British Journal of Clinical Psychology, 48, 335–346. doi:10.1348/014466508X397142.

    Article  PubMed  Google Scholar 

  26. Phillips, L. H., Henry, J. D., Hosie, J. A., & Milne, A. B. (2006). Age, anger regulation and well-being. Aging & Mental Health, 10(3), 250–256. doi:10.1080/13607860500310385.

    CAS  Article  Google Scholar 

  27. Politis, C. (1998). The psychosocial impact of chronic illness. Annals of the New York Academy of Sciences, 850, 349–354. Retrieved from

  28. Prasomsuk, S., Jetsrisuparp, A., Ratanasiri, T., & Ratanasiri, A. (2007). Lived experiences of mothers caring for children with Thalassemia major in Thailand. Journal for Specialists in Pedriatric Nursing, 12(1), 13–23. doi:10.1111/j.1744-6155.2007.00085.x.

    Google Scholar 

  29. Rizwan, H. C. (2012). Patterns of spirituality in anxious and non anxious group (Unpublished BS Thesis). Centre for Clinical Psychology, University of the Punjab, Lahore.

  30. Ryff, C. D. (1986). The subjective construction of self and society: An agenda for life span research. In V. W. Marshall (Ed.), Later life: The social psychology of aging (pp. 33–74). Beverly Hills, CA: Sage

  31. Ryff, C. D. (1989). Happiness is everything, or is it? Explorations on the meaning of psychological well-being. Journal of Personality and Social Psychology, 57(6), 1069–1081. doi:10.1037/0022-3514.57.6.1069.

    Article  Google Scholar 

  32. Savundranayagam, M. Y., Hummert, M. L., & Montgomery, R. J. V. (2005). Investigating the effects of communication problems on caregiver burden. Journal of Gerontology, 60(1), 48–55. Retrieved from

  33. Savundranayagam, M. Y., Montgomery, R. J. V., & Kosloski, K. (2010). A dimensional analysis of caregiver burden among spouses and adult children. The Gerontologist (advanced online publication). doi:10.1093/geront/gnq102.

  34. Schillings, M. K. (2012). Spiritual support as coping among Alzheimer’s caregivers (Unpublished BS Thesis). The School of Social Work, Louisiana State University and Agricultural and Mechanical College.

  35. Sirois, F. M., & Tosti, N. (2012). Lost in the moment? An investigation of procrastination, mindfulness, and well-being. Journal of Rational Emotive Cognitive Behavior Therapy, 30, 237–248. doi:10.1007/s10942-012-0151-y.

    Article  Google Scholar 

  36. Stuckey, J. C., Nuendorfer, M. M., & Smyth, K. A. (1996). Burden and well-being: The same coin or related currency? The Gerontologist, 36(5), 686–693. Retrieved from

  37. Thalassemia Society of Pakistan. (2013). Thalassemia: What is it?. Retrieved from

  38. Tiliouine, H., Cummins, R. A., & Davern, M. (2009). Islamic religiosity, subjective well-being, and health. Mental Health, Religion & Culture, 12, 55–74. doi:10.1080/13674670802118099.

    Article  Google Scholar 

  39. Tsiantis, J., Xypolita-Tsantili, D., & Papadakou-Lagoyianni, S. (1982). Family reactions and their management in a parents group with beta-thalassaemia. Arch Dis Child, 57, 860–863. Retrieved from

  40. Yousaf, H. (2010). Psycho-social correlates of psychological well-being among adolescents in the area of terrorism (Unpublished MS Thesis). Centre for Clinical Psychology, University of the Punjab, Lahore.

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Anum, J., Dasti, R. Caregiver Burden, Spirituality, and Psychological Well-Being of Parents Having Children with Thalassemia. J Relig Health 55, 941–955 (2016).

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  • Caregiver burden
  • Spirituality
  • Psychological well-being
  • Thalassemia