Social, Psychological and Financial Burden on Caregivers of Children with Chronic Illness: A Cross-sectional Study
- 1.2k Downloads
To explore social, psychological and financial burden on caregivers of chronically diseased children.
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.
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.
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.
KeywordsChronic diseases Caregiver Financial burden Depression Anxiety
The authors thank Ms Amee Amin for assistance in editing the language of the manuscript.
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
Source of Funding
- 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
- 5.Dey SK. Education of physician on end of life care: Indian perspective. Indian Pediatr. 2000;37:1047–50.Google Scholar
- 6.Selye H. The stress of life. New York: McGraw Hill; 1976.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
- 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
- 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.Google Scholar