Illness-related communication between siblings and parents of children with chronic illness and life-limiting conditions: A qualitative analysis.

IF 16.4 1区 化学 Q1 CHEMISTRY, MULTIDISCIPLINARY Accounts of Chemical Research Pub Date : 2024-10-11 DOI:10.1017/S1478951524001056
Lauren Kelada, Tiina Jaaniste, Anjali Cuganesan, Wei Ling Audrey Chin, Sarah Caellainn Tan, Joanna Wu, Robert Ilin, Eden Robertson, Donna Drew, Claire E Wakefield
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Abstract

Background: Having a brother or sister who has a chronic illness (lasting >6 months and requiring long-term care) or life-limiting condition (LLC; where cure is highly unlikely and the child is expected to die) has major impacts on siblings. Parent-sibling illness-related communication may contribute to siblings' capacity to cope.

Objectives: In this study, we aimed to explore parent-sibling illness-related communication, from the perspectives of parents and siblings. We also aimed to qualitatively compare participants' responses according to illness group (chronic illness vs. LLCs).

Methods: We collected qualitative data from siblings (32 with a brother/sister with a chronic illness, 37 with a brother/sister with an LLC) and parents of a child with a chronic illness (n = 86) or LLC (n = 38) using purpose-designed, open-ended survey questions regarding illness-related communication. We used an inductive qualitative content analysis and matrix coding to explore themes and compare across illness groups.

Results: Two-thirds of siblings expressed satisfaction with their family's illness-related communication. Siblings typically reported satisfaction with communication when it was open and age-appropriate, and reported dissatisfaction when information was withheld or they felt overwhelmed with more information than they could manage. Parents generally favored an open communication style with the siblings, though this was more common among parents of children with an LLC than chronic illness.

Significance of results: Our findings show that while many siblings shared that they felt satisfied with familial illness-related communication, parents should enquire with the siblings about their communication preferences in order to tailor illness-related information to the child's maturity level, distress, and age.

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患有慢性病和生命垂危疾病儿童的兄弟姐妹与父母之间与疾病相关的沟通:定性分析。
背景:哥哥或姐姐患有慢性疾病(持续时间超过 6 个月,需要长期护理)或局限性疾病(LLC;治愈的可能性极小,预计患儿将会死亡),会对兄弟姐妹产生重大影响。父母与兄弟姐妹之间与疾病相关的沟通可能有助于提高兄弟姐妹的应对能力:本研究旨在从父母和兄弟姐妹的角度探讨父母与兄弟姐妹之间与疾病相关的沟通。我们还旨在根据疾病组别(慢性病与有限责任公司)对参与者的反应进行定性比较:我们通过有目的、开放式的调查问题,收集了患有慢性病(86 人)或有限责任公司(38 人)儿童的兄弟姐妹(32 人的兄弟姐妹患有慢性病,37 人的兄弟姐妹患有有限责任公司)和父母在疾病相关沟通方面的定性数据。我们使用归纳式定性内容分析和矩阵编码来探索主题,并对不同疾病群体进行比较:三分之二的兄弟姐妹对家人与疾病相关的沟通表示满意。兄弟姐妹们通常对开放式和与年龄相适应的沟通方式表示满意,而对隐瞒信息或信息过多感到不知所措的沟通方式表示不满。父母一般倾向于与兄弟姐妹进行开放式沟通,尽管这种情况在患有有限责任公司而非慢性疾病的儿童的父母中更为常见:我们的研究结果表明,虽然许多兄弟姐妹都对与疾病相关的家庭沟通感到满意,但父母应向兄弟姐妹询问他们的沟通偏好,以便根据儿童的成熟程度、痛苦程度和年龄调整与疾病相关的信息。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Accounts of Chemical Research
Accounts of Chemical Research 化学-化学综合
CiteScore
31.40
自引率
1.10%
发文量
312
审稿时长
2 months
期刊介绍: Accounts of Chemical Research presents short, concise and critical articles offering easy-to-read overviews of basic research and applications in all areas of chemistry and biochemistry. These short reviews focus on research from the author’s own laboratory and are designed to teach the reader about a research project. In addition, Accounts of Chemical Research publishes commentaries that give an informed opinion on a current research problem. Special Issues online are devoted to a single topic of unusual activity and significance. Accounts of Chemical Research replaces the traditional article abstract with an article "Conspectus." These entries synopsize the research affording the reader a closer look at the content and significance of an article. Through this provision of a more detailed description of the article contents, the Conspectus enhances the article's discoverability by search engines and the exposure for the research.
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