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

IF 1.1 Q4 HEALTH CARE SCIENCES & SERVICES
Savita Butola, Damini Butola
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引用次数: 0

Abstract

Objectives: 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. Material and Methods: Qualitative study based on thematic analysis of semi-structured interviews with caregivers – either serving personnel or their dependents, in three centres. Results: 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. Conclusion: 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.
军人家庭在姑息治疗中照顾患者时所面临的儿童相关问题-一项定性研究
目标:获得姑息治疗的机会有限,特别是在印度农村。需要姑息治疗小组照顾的儿童本身可能就是病人,或者是病人的兄弟姐妹和子女。武装部队家庭面临着特有的生活方式挑战——频繁调动、生活在困难和偏远地区、服役人员长时间与家人分开——与平民面临的问题非常不同。服兵役增加了服役人员及其家庭的心理社会负担风险。大多数人依靠私人和国家医疗服务来进行姑息治疗,所以姑息治疗社区了解他们的问题很重要。本研究旨在探讨军人家属在照顾姑息治疗病人时所面对的儿童相关问题。材料和方法:定性研究基于对三个中心的护理人员(服务人员或其家属)的半结构化访谈的主题分析。结果:对15次访谈的分析表明,武装部队家属在照顾姑息病人时面临着与儿童有关的复杂挑战,原因包括: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、生活在非土著地区时面临社会隔离、语言和文化障碍、无法建立和获得家庭和社区支持以及限制性报销政策造成的经济负担。结论:虽然组织内的医疗和行政支持提供了缓冲,但在父亲长时间不在的情况下,妻子必须独自管理,当孩子住在校外时,安全是一个问题,服务人员报告说,在需要的时候不在场,他们感到内疚、愤怒和无助。对这些问题的认识可以使姑息治疗工作者根据服务家庭的需要提供更有意义的支持。
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来源期刊
Indian Journal of Palliative Care
Indian Journal of Palliative Care HEALTH CARE SCIENCES & SERVICES-
CiteScore
2.30
自引率
0.00%
发文量
57
期刊介绍: Welcome to the website of the Indian Journal of Palliative Care. You have free full text access to recent issues of the journal. The links connect you to •guidelines and systematic reviews in palliative care and oncology •a directory of palliative care programmes in India and IAPC membership •Palliative Care Formulary, book reviews and other educational material •guidance on statistical tests and medical writing.
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