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癌症遗属兄弟姐妹对疾病和死亡的积极和消极记忆和体验:一项全国性随访。

Cancer-bereaved siblings' positive and negative memories and experiences of illness and death: A nationwide follow-up.

机构信息

Department of Nursing,Center for Health Promotion Research,Faculty of Health and Social Science,Norwegian University of Technology and Science,Trondheim,Norway.

Division of Women's and Child's Health,Childhood Cancer Research Unit,Karolinska Institutet,Stockholm,Sweden.

出版信息

Palliat Support Care. 2018 Aug;16(4):406-413. doi: 10.1017/S1478951517000529. Epub 2017 Jun 23.

Abstract

OBJECTIVE

Our aim was to explore bereaved siblings' positive and negative memories and experiences of their brother's or sister's illness and death.

METHOD

In our nationwide Swedish study, 174 of 240 (73%) bereaved siblings participated, and 70% responded to two open-ended statements, which focused on siblings' positive and negative memories and experiences of illness and death. The data were analyzed using systematic text condensation.

RESULTS

The bereaved siblings' responses were categorized into four different themes: (1) endurance versus vulnerability, (2) family cohesion versus family conflicts, (3) growth versus stagnation, and (4) professional support versus lack of professional support. The first theme expressed endurance as the influence that the ill siblings' strong willpower, good mood, and stamina in their difficult situation had on healthy siblings, whereas vulnerability was expressed as the feeling of emptiness and loneliness involved with having an ill and dying sibling. In the second theme, family cohesion was expressed as the bonds being strengthened between family members, whereas family conflicts often led siblings to feel invisible and unacknowledged. In the third theme, most siblings expressed the feeling that they grew as individuals in the process of their brother's or sister's illness and death, whereas others experienced stagnation because of the physical and mental distress they bore throughout this time, often feeling forgotten. In the last theme-professional support-most siblings perceived physicians and staff at the hospital as being warm, kind, and honest, while some siblings had negative experiences.

SIGNIFICANCE OF RESULTS

The study shows that bereaved siblings can have positive memories and experiences. The significance of the positive buffering effect on bereaved siblings' own endurance, personal growth, family cohesion, and social support should be noted. This knowledge can be valuable in showing healthcare professionals the importance of supporting the siblings of children with cancer throughout the cancer trajectory and afterwards into bereavement.

摘要

目的

本研究旨在探讨丧亲兄弟姐妹对其患病兄弟或姐妹的疾病和死亡的积极和消极记忆及体验。

方法

在我们的全国性瑞典研究中,240 名丧亲兄弟姐妹中有 174 名(73%)参与,其中 70%对两个重点关注疾病和死亡方面的兄弟姐妹积极和消极记忆及体验的开放式陈述做出了回应。数据采用系统文本凝结进行分析。

结果

丧亲兄弟姐妹的回应分为四个不同主题:(1)坚韧与脆弱,(2)家庭凝聚力与家庭冲突,(3)成长与停滞,以及(4)专业支持与缺乏专业支持。第一个主题表示,患病兄弟姐妹坚强的意志力、良好的情绪和在困境中的耐力对健康的兄弟姐妹产生了影响,而脆弱则表现为有患病和垂死兄弟姐妹所带来的空虚和孤独感。在第二个主题中,家庭凝聚力表现为家庭成员之间的关系得到加强,而家庭冲突往往使兄弟姐妹感到自己被忽视和不被认可。在第三个主题中,大多数兄弟姐妹表示,在患病兄弟姐妹的疾病和死亡过程中,他们作为个体得到了成长,而其他人则因为身心痛苦而停滞不前,经常感到被遗忘。在最后一个主题——专业支持——大多数兄弟姐妹认为医生和医院工作人员热情、善良和诚实,而有些兄弟姐妹则有负面体验。

结果的意义

该研究表明,丧亲的兄弟姐妹也可能有积极的记忆和体验。应当注意积极缓冲效应对丧亲兄弟姐妹自身的坚韧、个人成长、家庭凝聚力和社会支持的重要意义。这些知识对于向医护人员展示在癌症病程中以及之后的丧亲阶段支持癌症患儿兄弟姐妹的重要性是有价值的。

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