Butola Savita, Butola Damini
Government of India, Border Security Force Hospital, Panisagar, Tripura, India.
Department of Clinical Psychology, Ranchi Institute of Neuro-Psychiatry and Allied Sciences, Ranchi, Jharkhand, India.
Indian J Palliat Care. 2023 Oct-Dec;29(4):437-446. doi: 10.25259/IJPC_58_2023. Epub 2023 Nov 3.
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.
在印度农村地区，姑息治疗的可及性有限。需要姑息治疗团队护理的儿童可能本身就是患者，也可能是患者的兄弟姐妹或子女。武装部队家庭面临着独特的生活方式挑战——频繁调动、生活在艰苦偏远地区、服役人员长期与家人分离——这些与平民面临的问题截然不同。服兵役会增加服役人员及其家庭心理社会负担的风险。大多数人依靠私立和国家医疗服务来获得姑息治疗，因此姑息治疗界了解他们的问题很重要。本研究旨在探讨武装部队家庭在为姑息治疗患者提供护理时面临的与儿童相关的问题。
基于对三个中心的护理人员（服役人员或其家属）进行的半结构化访谈的主题分析开展定性研究。
对15次访谈的分析表明，武装部队家庭在照顾姑息治疗患者时，由于频繁调动、偏远地区缺乏儿科姑息治疗服务、护理连续性中断、社会隔离、生活在非本地地区时的语言和文化障碍、无法建立和获得家庭及社区支持以及报销政策受限导致的经济负担，在儿童护理方面面临复杂挑战。
尽管组织内部的医疗和行政支持起到了缓冲作用，但在父亲长期不在的情况下，妻子不得不独自应对，而且当孩子住在营区外时安全是个问题，服役人员表示在需要时不在场会感到内疚、愤怒和无助。认识到这些问题可以使姑息治疗工作者提供更有针对性的、符合军属需求的有意义的支持。
