The costs experienced by caregivers of children being treated for cancer in New Delhi, India

Abstract

Background/Objectives: The allocation of time and other resources is essential to enable the treatment of children with cancer. Existing research from high income countries indicate that families incur significant variable costs impacting their finances and lifestyle substantially. However, there is no research examining the costs of childhood cancer from families in India, which may impact families' decision to abandon their child's treatment. Design/Methods: A qualitative descriptive study was carried out in one private and one government-run hospital in New Delhi. Semi-structured interviews were conducted with caregivers of children with cancer in English or Hindi. Interviews were transcribed verbatim, translated into English, and analyzed using a thematic approach. Results: In total, 26 caregivers of 25 children diagnosed with cancer participated in the study. Caregivers described various direct, indirect and psychosocial costs associated with their child's cancer treatment. The primary sources of direct costs were hospital admissions, medications, food and travel expenses. Indirect or time costs involved managing their child's treatment and its side effects. Work hours, time spent with other family members and sleep were most affected by this commitment to caring for their child. Psychosocial costs included coping with the uncertainty caused by a cancer diagnosis, feelings of guilt and sadness as well as having to watch their children suffer. Family members, healthcare professionals, other caregivers and employers were named as sources of support for families. Cutting back on routine expenses and negotiating treatment options were described as strategies for coping with the financial burden of treatment. No families abandoned treatment or indicated that they intended to do so. Conclusion: The results of this study provide avenues for healthcare professionals and institutions to develop interventions aimed at reducing the costs associated with cancer treatment. Further research into the relationship between direct, indirect and psychosocial costs and treatment abandonment is needed.