Issues Related to Children-Faced by Armed Forces Families When Caring for Patients in Palliative Care - A Qualitative Study.

Abstract

Access to palliative care is limited, especially in rural India. Children needing care by palliative teams may themselves be patients, or siblings and children of patients. Armed forces families face characteristic lifestyle challenges - frequent transfers, living in difficult and remote areas, serving personnel staying apart from families for long periods - very different from issues faced by civilians. Military service increases the risk of psychosocial burden for serving personnel as well as families. Most depend on private and state medical services for palliative care so it is important for the palliative community to understand their issues. This study aimed to explore the issues related to children - faced by armed forces families when caring for patients in palliative care. Qualitative study based on thematic analysis of semi-structured interviews with caregivers - either serving personnel or their dependents, in three centres. Analysis of the 15 interviews showed that armed forces families face complex challenges related to children when caring for the palliative patient due to frequent movement, lack of paediatric palliative services in far-flung areas, disruption of the continuity of care, social isolation, language, and cultural barriers when living in non-native areas, inability to build and access family and community support and financial burden due to restrictive reimbursement policies. Although medical and administrative support within the organisation provides a cushion, wives have to manage alone in the father's prolonged absence, and safety is a concern for children when living outside the campuses and serving personnel report guilt, anger, and helplessness at not being present when needed. Awareness of these issues can enable palliative workers to provide more meaningful support tailored to the needs of service families.