Choice of Place of the Death of Children with Cancer during End-of-Life Care – Parent’s Perspectives in a Developing Country

IF 1.1 Q4 HEALTH CARE SCIENCES & SERVICES
Latha Sneha, Swathi Narasimhan, Julius Xavier Scott, S. Shuba, P. S. Rajakumar, Anitha Rani
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Abstract

Objectives: The place of a child’s death is an indicator of the quality of paediatric palliative and end-of-life care. This study aimed to identify the choices of parents about the place of death of their children with cancer and to evaluate whether they had any regrets about their choices retrospectively. Material and Methods: All children who were treated in our centre for the past 9 years with palliative intent treatment to improve their quality of life were included in this study. For the children whose place of death was the hospital, data were collected from the case records. For the children who passed away at home, a telephone call was made to the families, informing them of the study, allowing time for there to be any clarifications. A verbal consent was requested for the study. Data were collected through the telephone conversation. Results: Out of the 59 children who died during the study period from 2012 to 2021, 31 children (52.5%) died in hospital settings. Eighteen (58.1%) families who had opted hospital as the place of death had regretted their choices. Families who chose home as a place of death were upset about inadequate pain management. The majority of the families had desired home care services for adequate symptom control and to keep the child comfortable in a familiar environment. Conclusion: Most children with life-limiting conditions continue to die in the hospital setting in developing countries due to a lack of dedicated palliative care services and home care. Most of the families retrospectively, regretted their choices of place of death. Most of the families, however, would prefer home as the place of death, if there was better end-of-life care support for symptom control at home. Specific policies institutional and nationwide need to be formulated to provide guidance to the professionals on the discussion of goals of care and place of care, with a supporting network to ensure its provision.
在临终关怀期间癌症儿童死亡地点的选择——发展中国家父母的观点
目标:儿童死亡地点是儿科姑息治疗和临终关怀质量的一个指标。这项研究旨在确定父母对癌症患儿死亡地点的选择,并评估他们是否对自己的选择有任何后悔。材料和方法:本研究纳入了过去9年中在本中心接受缓和治疗以改善其生活质量的所有儿童。对于死亡地点在医院的儿童,从病例记录中收集数据。对于在家中去世的孩子,我们给他们的家人打了一个电话,通知他们这项研究,让他们有时间去澄清。这项研究要求得到口头同意。数据是通过电话交谈收集的。结果:在2012年至2021年研究期间死亡的59名儿童中,31名儿童(52.5%)死于医院环境。18个(58.1%)选择医院作为死亡地点的家庭后悔自己的选择。选择家中作为死亡地点的家庭对疼痛管理不足感到不安。大多数家庭希望获得家庭护理服务,以充分控制症状并使儿童在熟悉的环境中感到舒适。结论:在发展中国家,由于缺乏专门的姑息治疗服务和家庭护理,大多数患有生命限制疾病的儿童继续在医院环境中死亡。大多数家属事后都对他们选择的死亡地点表示遗憾。然而,如果在家中有更好的临终关怀支持来控制症状,大多数家庭更愿意将家中作为死亡地点。需要在机构和全国范围内制定具体政策,指导专业人员讨论护理目标和护理地点,并建立一个支持网络以确保提供这些目标。
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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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