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患有慢性肾脏疾病儿童的兄弟姐妹:日常生活体验的定性研究。

Siblings of children with chronic kidney disease: A qualitative study of everyday life experiences.

机构信息

Department of Nephrology, Odense University Hospital, Odense, Denmark.

Department of Clinical Research, Univerisity of Southern Denmark, Odense, Denmark.

出版信息

J Ren Care. 2021 Dec;47(4):242-249. doi: 10.1111/jorc.12389. Epub 2021 May 26.

Abstract

BACKGROUND

Chronic kidney disease in children has an impact on all family members. Healthy siblings, in particular, may experience negative psychological and emotional symptoms. Little attention has been paid to how they experience everyday family life and the impact of their sibling's disease.

OBJECTIVES

To explore perspectives on and experiences of everyday life among siblings of children with chronic kidney disease.

DESIGN

An explorative study with a qualitative method.

PARTICIPANTS

Seven siblings (7-13 years) of children with chronic kidney disease (5-16 years) were included.

APPROACH

The study took a phenomenological-hermeneutical approach. Semistructured individual interviews were conducted. The data were analysed using Ricoeur's theory of narrative and interpretation, on three levels: naïve reading, structural analysis and critical interpretation and discussion.

FINDINGS

Three themes emerged: The illness is in the background or comes to the fore, being concerned for and taking care of the sick sibling and the importance of bonds with relatives or other significant adults.

CONCLUSION

In everyday life, participants experienced that their sick sibling's illness was either in the background or came to the fore. They needed to adapt to periods of hospitalisation. They felt a need to be attentive to, take care of and have concern for the sick brother or sister. Conflicts caused feelings of loneliness; however, having knowledge about the disease provided security and meaning. Being introduced to the healthcare professionals was significant. It was important to have close relationships with friends and other adults, which gave rise to feelings of self-confidence and being supported.

摘要

背景

儿童慢性肾脏病会对所有家庭成员产生影响。健康的兄弟姐妹尤其可能经历负面的心理和情绪症状。然而,很少有人关注他们如何体验日常生活以及他们兄弟姐妹疾病的影响。

目的

探讨儿童慢性肾脏病患儿兄弟姐妹的日常生活观点和体验。

设计

采用定性研究中的探索性研究方法。

参与者

7 名(7-13 岁)患有慢性肾脏病(5-16 岁)患儿的兄弟姐妹被纳入研究。

方法

研究采用现象学-解释学方法。进行了半结构化的个体访谈。使用 Ricoeur 的叙事和解释理论对数据进行分析,分为三个层次:朴素阅读、结构分析和批判性解释与讨论。

结果

出现了三个主题:疾病处于背景或凸显,关心和照顾患病的兄弟姐妹,以及与亲属或其他重要成年人的关系的重要性。

结论

在日常生活中,参与者体验到他们患病兄弟姐妹的疾病要么处于背景中,要么凸显出来。他们需要适应住院治疗的时期。他们感到需要关注、照顾和关心生病的兄弟姐妹。冲突导致孤独感;然而,了解疾病提供了安全感和意义。结识医护人员很重要。与朋友和其他成年人保持密切关系会带来自信和支持感。

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