"我怎么办?":与患有危及生命或生命垂危疾病的兄弟姐妹共同生活的兄弟姐妹的生活经历。

IF 2.1 4区 医学 Q2 NURSING International Journal of Qualitative Studies on Health and Well-Being Pub Date : 2024-12-01 Epub Date: 2024-02-25 DOI:10.1080/17482631.2024.2321645
Trine Brun Kittelsen, Charlotte Castor, Anja Lee, Lisbeth Gravdal Kvarme, Anette Winger
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引用次数: 0

摘要

背景:人们对作为危及生命或限制生命的儿童的兄弟姐妹的经历缺乏了解。兄弟姐妹的观点通常是通过他们的父母而不是兄弟姐妹自己来表达的:本研究采用诠释现象学的定性设计。13 名癌症或遗传病患儿的兄弟姐妹(3-29 岁)参加了半结构化访谈。分析以范曼南的生命本质为指导进行主题分析:结果:一个总主题 "我怎么办?"表明,LT/LL 患儿的兄弟姐妹在应对自身挑战和需求的同时,也在努力获得父母的关注。这个总主题衍生出三个副主题:生活压力大、感觉被忽视、有自己的需求:研究显示,兄弟姐妹自身的需求与患病儿童的需求相互竞争,导致兄弟姐妹有可能退后一步,而不是表达他们自己可能真正需要的东西。这些研究结果可以让医护人员了解教育和支持父母及兄弟姐妹身边社区的重要性,例如,帮助学校教师了解如何满足兄弟姐妹的需求。
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"What about me?": lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition.

Background: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings themselves.

Method: This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3-29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen's lifeexistentials.

Results: One overall theme, "What about me?", illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one's own.

Conclusion: The study revealed that siblings' own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings' needs.

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来源期刊
CiteScore
3.20
自引率
5.60%
发文量
99
审稿时长
14 weeks
期刊介绍: International Journal of Qualitative Studies on Health and Well-being acknowledges the international and interdisciplinary nature of health-related issues. It intends to provide a meeting-point for studies using rigorous qualitative methodology of significance for issues related to human health and well-being. The aim of the International Journal of Qualitative Studies on Health and Well-being is to support and to shape the emerging field of qualitative studies and to encourage a better understanding of all aspects of human health and well-being.
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