Unmet Supportive Care Needs of Family Caregivers of Children with Cancer: A Quantitative Study in hyderabad, India

Abstract

Cancer is one of the most common life threatening disease in children and adolescents. In the process of finding better treatments for the child, the equal involvement and impact on their caregivers are often neglected. Since the improvement of the course of cancer treatment for the child can be greatly influenced by physical, behavioural and psychological support of the parent, it is essential to parallely focus on their unmet needs and conduct broad studies to develop vital support systems. This study attempts to showcase in detail the various unmet needs of the parents and caregivers seen across different domains. In the setting of a tertiary health care centre, parents/caregivers of paediatric cancer patients were surveyed with the help of a CNQ-PC questionnaire whose responses were evaluated and measured using descriptive statistics and studied in correlation with the sociodemographic data obtained. The study employs a systematic quantitative study based on relevant literature, identifying a range of unmet supportive care needs, including emotional support, information, work, financial assistance, and practical support on which a comprehensive account was constructed. Major aspects observed were the highest unmet needs being present in the domains of Feelings and Daily life; difficulty in accessing the health care, financial burden; unemployment as well as physical and mental exertion of participants. The findings highlight the need for a comprehensive and tailored supportive care program for parents of paediatric cancer patients. Healthcare providers should assess and address the unmet supportive care needs of parents to enhance the quality of care provided to paediatric cancer patients and their families. The study underscores the importance of continued research on this topic to inform the development of effective supportive care interventions for parents of paediatric cancer patients.