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

Ankush K. Khanna, Anusha Prabhakaran, Priyanka Patel, Jaishree D. Ganjiwale, Somashekhar M. Nimbalkar

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.