自我管理与人际关系:患有慢性疾病的青少年及其同伴的观点。

IF 2.6 2区 医学 Q2 INFORMATION SCIENCE & LIBRARY SCIENCE Qualitative Health Research Pub Date : 2024-11-01 DOI:10.1177/10497323241285761
Uwe Flick, Gundula Röhnsch
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引用次数: 0

摘要

由于他们的疾病主要是在私人环境中进行管理,因此慢性病患者要做 "慢性功课"。与自我管理相协调的环境形成了一种应对疾病的 "慢性病护理基础设施",就患有慢性病的年轻成年人(YACCs)而言,这种基础设施基本上是由同龄人形成的。文章调查了青年慢性病患者如何在同伴关系中处理自己的疾病,以及同伴如何看待自己在青年慢性病患者自我管理中的角色。如果慢性病涉及的是与同龄人关系相对不稳定、不坚定的年轻人,那么慢性病家庭作业和慢性病护理基础设施又是什么样的呢?我们对 60 名青年保健员(患有 1 型糖尿病、癌症、慢性炎症性肠病和罕见疾病)和 30 名同伴进行了偶发性访谈。访谈采用主题编码法进行分析。根据具体情况,将 YACC 的陈述与同龄人的观点进行比较。我们发现,同伴们在寻求监督或控制 YACC 自我管理的程度上存在差异。我们发现了三类青年行动者:(a)关注自身健康需求的人;(b)寻求在疾病管理与社交和归属感需求之间取得平衡的人;以及(c)在日常生活中不重视自己的疾病,转而寻求同伴认可的人。采用多角度的方法,一方面研究青年咨询理事会成员及其同伴在自我管理方面的经验,另一方面研究各种慢性疾病,从而对这一问题进行复杂而全面的分析。
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Self-Management and Relationships: Perspectives of Young Adults With Chronic Conditions and Their Peers.

Because their disease is largely managed in the private environment, people with chronic conditions perform "chronic homework." The environment with which self-management is coordinated forms a kind of "chronic care infrastructure" in dealing with the disease and, in the case of young adults with chronic conditions (YACCs), is essentially formed by peers. The article investigates how YACCs handle their illness in the context of their peer relationships and how peers see their own role in the context of the YACCs' self-management. What do chronic homework and chronic care infrastructures look like, if the chronic conditions concern young adults in comparatively unstable and non-committal relationships with their peers? Episodic interviews were conducted with 60 YACCs (with type 1 diabetes, cancer, chronic inflammatory bowel disease, and rare conditions) and 30 peers. The interviews were analyzed using thematic coding. The YACCs' statements were compared to the peer perspectives on a case-by-case basis. We found that peers differ in the extent to which they seek to monitor or control the YACCs' self-management. We identified three groups of YACCs: (a) those who focus on their health needs; (b) those who seek to balance their disease management with their need for sociability and belonging; and (c) those who deprioritize their illness in their everyday life in favor of peer acceptance. The multi-perspective approach to YACCs' and their peers' experiences with self-management on the one hand and referring to a range of chronic conditions on the other allows to analyze this issue in a complex and comprehensive way.

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来源期刊
CiteScore
6.80
自引率
6.20%
发文量
109
期刊介绍: QUALITATIVE HEALTH RESEARCH is an international, interdisciplinary, refereed journal for the enhancement of health care and to further the development and understanding of qualitative research methods in health care settings. We welcome manuscripts in the following areas: the description and analysis of the illness experience, health and health-seeking behaviors, the experiences of caregivers, the sociocultural organization of health care, health care policy, and related topics. We also seek critical reviews and commentaries addressing conceptual, theoretical, methodological, and ethical issues pertaining to qualitative enquiry.
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