Validation of the Caregiver Burden Scale & assessment of caregiving burden of parents of children with advanced cancer at a tertiary care set-up in India

Caregiver-burden is important, as the health and well-being of caregivers of patients suffering from cancer or long-term illnesses is shown to directly affect the patient’s and quality of care. There are very few available instruments (like the Zarith Burden Scale, Care of my child with advanced cancer or the Caregiver Difficulties Scale) to measure the caregiver burden of the parents of children with chronic illness or advanced cancer. There is a need to develop scales that are context-appropriate, validated in the local languages and reliable for parents of children with advanced cancer. This study seeks to validate the Caregiver Burden Scale in the local language (Hindi) and assess its applicability to the Indian context. The validated scale will be used to measure caregiver burden in parents of Paediatric patients referred to Paediatric Palliative Unit at TMH.

This study aims to benefit researchers in Paediatric Palliative Care for the planning of and investment into interventions that will prove useful in decreasing caregiver burden and fatigue.