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韩国丧亲父母失去白血病患儿后的儿科姑息治疗体验。

Experiences of Pediatric Palliative Care Among Bereaved Parents Who Lost a Child With Leukemia in South Korea.

出版信息

J Hosp Palliat Nurs. 2024 Apr 1;26(2):E74-E82. doi: 10.1097/NJH.0000000000001001. Epub 2023 Nov 13.

Abstract

Pediatric palliative care was introduced in South Korea in 2018, with an increased need for care of children with life-limiting conditions, such as leukemia. However, the perspective of parents, who are the primary caregivers, regarding pediatric palliative care has not been explored. This study aimed to describe the pediatric palliative care-related experiences of parents who had lost a child to leukemia to better understand their needs and care outcomes. Ten mothers of children who received pediatric palliative care were recruited. Individual in-depth interviews were conducted. Phenomenology was applied to elucidate parents' experiences during their children's illness and after bereavement. From 179 main statements and 46 meaningful units, 22 themes were derived and grouped into 11 theme clusters and 4 categories. The participants described that the pediatric palliative care team had an indispensable role in providing emotional support to them and their children; this support continued even after the child's death. In addition, the participants were satisfied with their choice to receive pediatric palliative care and hoped that more regions could benefit from the services. The study findings could contribute to advances and the popularization of pediatric palliative care in South Korea.

摘要

韩国于 2018 年引入儿科姑息治疗,对患有白血病等生命有限疾病的儿童的护理需求增加。然而,作为主要照顾者的父母对儿科姑息治疗的看法尚未得到探索。本研究旨在描述失去白血病儿童的父母的儿科姑息治疗相关体验,以更好地了解他们的需求和护理结果。招募了 10 名接受儿科姑息治疗的儿童的母亲。进行了个体深入访谈。现象学被应用于阐明父母在孩子患病和丧亲后的经历。从 179 个主要陈述和 46 个有意义的单位中,得出了 22 个主题,并分为 11 个主题群和 4 个类别。参与者描述说,儿科姑息治疗团队在为他们自己和孩子提供情感支持方面发挥了不可或缺的作用;这种支持甚至在孩子去世后仍在继续。此外,参与者对接受儿科姑息治疗的选择感到满意,并希望更多地区能够受益于这项服务。研究结果可能有助于推动韩国儿科姑息治疗的发展和普及。

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