Skip to main content

Social, Psychological and Financial Burden on Caregivers of Children with Chronic Illness: A Cross-sectional Study

The Indian Journal of Pediatrics volume 82, pages 1006–1011 (2015)Cite this article

Abstract

Objectives

To explore social, psychological and financial burden on caregivers of chronically diseased children.

Methods

Participants were recruited from ambulatory and hospital areas in pediatrics department following informed consent. Parents who were caregivers of children 18y or below in age with chronic illness were included. Socio-demographic details were collected using a semi structured questionnaire, adapted from Family Burden Interview Schedule (FBIS). The psychological well-being of caregivers was assessed using Patient Health Questionnaire (PHQ-9) and Generalized Anxiety Disorder (GAD-7). Descriptive analysis and ANOVA was done for comparing mean scores of responses to analyze financial, psychological and social burden across different diagnosis.

Results

A total of 204 (89 females:115 males) participated. Only 27% were receiving some benefits from government or hospital side. No depressive symptoms were reported by 25% caregivers, while 37% reported mild and 38% moderate to severe depressive symptoms. No anxiety symptoms were reported by 33%, while 50% reported mild and 17% moderate to severe anxiety symptoms. No association was seen between gender of the caregiver and depressive or anxiety symptoms. Significantly higher financial and social burden was seen in cerebral palsy and cancer groups vis-a-vis other diseases, being least in thalassemia. Disruption of routine life was highest in cancer group caregivers followed by those in cerebral palsy group.

Conclusions

Most caregivers reported moderate depressive symptoms and mild to moderate anxiety symptoms. Cerebral palsy caused more social and financial burden on family vis-a-vis thalassemia. Social and financial burden on families of remaining diseases was comparable.

This is a preview of subscription content, access via your institution.

Access options

Buy single article

Instant access to the full article PDF.

43,34 €

Price includes VAT (Finland)
Tax calculation will be finalised during checkout.

References

  1. Pless IB, Pinkerton P. Chronic childhood disorder: promoting patterns of adjustment. Chicago: Year Book Medical; 1975.

    Google Scholar 

  2. American Academy of Pediatrics Committee on Children with Disabilities and Committee on Psychosocial Aspects of Child and Family Health. Psychosocial risks of chronic health conditions in childhood and adolescence. Pediatrics. 1993;92:876–8.

    Google Scholar 

  3. Bagga A, Mantan M. Nephrotic syndrome in children. Indian J Med Res. 2005;122:13–28.

    PubMed  Google Scholar 

  4. Shah D, Choudhury P, Dubey AP. Current trends in management of the beta thalassemias. Indian Pediatr. 1999;36:1229–42.

    CAS  PubMed  Google Scholar 

  5. Dey SK. Education of physician on end of life care: Indian perspective. Indian Pediatr. 2000;37:1047–50.

  6. Selye H. The stress of life. New York: McGraw Hill; 1976.

    Google Scholar 

  7. de Paula ES, Nascimento LC, Rocha SM. Roles assessment in families of children with chronic renal failure on peritoneal dialysis. Int J Nurs Pract. 2008;14:215–20.

    Article  PubMed  Google Scholar 

  8. Tong A, Lowe A, Sainsbury P, Craig JC. Experiences of parents who have children with chronic kidney disease: a systematic review of qualitative studies. Pediatrics. 2008;121:349–60.

    Article  PubMed  Google Scholar 

  9. Morrow AM, Hayen A, Quine S, Scheinberg A, Craig JC. A comparison of doctors’, parents’ and children’s reports of health states and health-related quality of life in children with chronic conditions. Child Care Health Dev. 2012;38:186–95.

    CAS  Article  PubMed  Google Scholar 

  10. Institute of Medicine. Crossing the quality chasm: a new health system for the twenty-first century. Washington: National Academy Press; 2001.

    Google Scholar 

  11. National Alliance for Caregiving; AARP. Caregiving in the U.S.: executive summary. Bethesda: National Alliance for Caregiving; 2009.

    Google Scholar 

  12. Tsai AC, Morton SC, Mangione CM, Keeler EB. A meta-analysis of interventions to improve care for chronic illnesses. Am J Manag Care. 2005;11:478–88.

    PubMed Central  PubMed  Google Scholar 

  13. Mitra S, Banerjee S. The impact of pediatric nephrotic syndrome on families. Pediatr Nephrol. 2011;26:1235–40.

    Article  PubMed  Google Scholar 

  14. Pai S, Kapur RC. The burden on the family of a psychiatric patient: development of an interview schedule. Br J Psychiatry. 1981;138:332–5.

    CAS  Article  PubMed  Google Scholar 

  15. Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depressive symptoms severity measure. J Gen Intern Med. 2001;16:606–13.

    PubMed Central  CAS  Article  PubMed  Google Scholar 

  16. Spitzer RL, Kroenke K, Williams JB, Lowe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006;166:1092–7.

    Article  PubMed  Google Scholar 

  17. Family Caregiver Alliance. Caregiver assessment: principles, guidelines and strategies for change. Report from a national consensus development conference. Vol. I. San Francisco: Family Caregiver Alliance; 2006.

    Google Scholar 

  18. Pinquart M, Sorensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003;18:250–67.

    Article  PubMed  Google Scholar 

  19. Rao P, Pradhan PV, Shah H. Psychopathology and coping in parents of chronically ill children. Indian J Pediatr. 2004;71:695–9.

    Article  PubMed  Google Scholar 

  20. Shatla R, Sayyah Hel S, Azzam H, Elsayed RM. Correlates of parental stress and psychopathology in pediatric epilepsy. Ann Indian Acad Neurol. 2011;14:252–6.

    PubMed Central  Article  PubMed  Google Scholar 

  21. Sharpe D, Rossiter L. Siblings of children with a chronic illness: a meta-analysis. J Pediatr Psychol. 2002;27:699–710.

    Article  PubMed  Google Scholar 

  22. Medway M, Tong A, Craig JC, et al. Parental perspectives on the financial impact of caring for a child with CKD. Am J Kidney Dis. 2015;65:384–93.

    Article  PubMed  Google Scholar 

  23. Caro JJ, Ward A, Green TC, et al. Impact of thalassemia major on patients and their families. Acta Hematol. 2002;107:150–7.

    Article  Google Scholar 

  24. Shaligram D, Girimaji SC, Chaturvedi SK. Quality of life issues in caregivers of youngsters with thalassemia. Indian J Pediatr. 2007;74:275–8.

    Article  PubMed  Google Scholar 

  25. Nahalla CK, FitzGerald M. The impact of regular hospitalization of children living with thalassaemia on their parents in Sri Lanka: a phenomenological study. Int J Nurs Pract. 2003;9:131–9.

    Article  PubMed  Google Scholar 

  26. Lal A, Kumar L, Malhotra S. Socio-economic burden of childhood asthma. Indian Pediatr. 1994;31:425–32.

    CAS  PubMed  Google Scholar 

  27. Pruthi GK, Singh TB. Psychosocial burden and quality of life in parents of children with thalassemia and CP. Delhi Psychol. 2010;2:46–57.

    Google Scholar 

  28. Altindağ O, Işcan A, Akcan S, Köksal S, Erçin M, Ege L. Anxiety and depression in mothers of children with cerebral palsy. Turk J Phys Med Rehabil. 2007;53:22–4.

  29. Moreira H, Carona C, Silva N, Frontini R, Bullinger M, Canavarro M. Psychological and quality of life outcomes in pediatric populations: a parent–child perspective. J Pediatr. 2013;163:1471–8.

    Article  PubMed  Google Scholar 

  30. Feizi A, Najmi B, Salesi A, Chorami M, Hoveidafar R. Parenting stress among mothers of children with different physical, mental, and psychological problems. J Res Med Sci. 2014;19:145–52.

    PubMed Central  PubMed  Google Scholar 

  31. Gray WN, Graef DM, Schuman SS, Janicke DM, Hommel KA. Parenting stress in pediatric IBD: relations with child psychopathology, family functioning, and disease severity. J Dev Behav Pediatr. 2013;34:237–44.

    PubMed Central  Article  PubMed  Google Scholar 

  32. Kieckhefer GM, Trahms CM, Churchill SS, Kratz L, Uding N, Villareale N. A randomized clinical trial of the building on family strengths program: an education program for parents of children with chronic health conditions. Matern Child Health J. 2014;18:563–74.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

The authors thank Ms Amee Amin for assistance in editing the language of the manuscript.

Contributions

AK and PP designed the study, collected the data, wrote the paper and approved the final manuscript. SMN conceived the study, designed the study, gave critical inputs to the paper, and approved the final manuscript. AP helped in designing the study, analyzed the data, drafted the paper, and approved the final manuscript. JDG analyzed and interpreted the data and approved the final manuscript. SMN will be the guarantor for the paper.

Conflict of Interest

None.

Source of Funding

None.

Author information

Affiliations

  1. Department of Pediatrics, Pramukhswami Medical College, Karamsad, Anand, Gujarat, 388325, India

    Ankush K. Khanna & Somashekhar M. Nimbalkar

  2. Department of Psychiatry, Pramukhswami Medical College, Karamsad, Gujarat, India

    Anusha Prabhakaran & Priyanka Patel

  3. Central Research Services, Charutar Arogya Mandal, Karamsad, Gujarat, India

    Jaishree D. Ganjiwale & Somashekhar M. Nimbalkar

Authors
  1. Ankush K. Khanna
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Anusha Prabhakaran
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Priyanka Patel
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Jaishree D. Ganjiwale
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Somashekhar M. Nimbalkar
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Somashekhar M. Nimbalkar.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Khanna, A.K., Prabhakaran, A., Patel, P. et al. Social, Psychological and Financial Burden on Caregivers of Children with Chronic Illness: A Cross-sectional Study. Indian J Pediatr 82, 1006–1011 (2015). https://doi.org/10.1007/s12098-015-1762-y

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12098-015-1762-y

Keywords

  • Chronic diseases
  • Caregiver
  • Financial burden
  • Depression
  • Anxiety