Flick Uwe, Röhnsch Gundula
Department of Education and Psychology, Freie Universität Berlin, Berlin, Germany.
Qual Health Res. 2025 Jul;35(8):916-931. doi: 10.1177/10497323241285761. Epub 2024 Nov 1.
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.
由于他们的疾病主要在私人环境中得到管理，慢性病患者需要完成“慢性病作业”。与自我管理相协调的环境在应对疾病方面形成了一种“慢性病护理基础设施”，而对于患有慢性病的年轻人（YACCs）来说，这种基础设施主要由同龄人构成。本文探讨了患有慢性病的年轻人在同龄人关系背景下如何应对自己的疾病，以及同龄人如何看待自己在这些年轻人自我管理中的角色。如果慢性病涉及与同龄人关系相对不稳定且不坚定的年轻人，那么“慢性病作业”和“慢性病护理基础设施”会是什么样的呢？我们对60名患有慢性病的年轻人（患有1型糖尿病、癌症、慢性炎症性肠病和罕见疾病）和30名同龄人进行了定期访谈。访谈采用主题编码进行分析。我们逐案比较了患有慢性病的年轻人的陈述和同龄人的观点。我们发现，同龄人在试图监督或控制患有慢性病的年轻人的自我管理程度上存在差异。我们确定了三类患有慢性病的年轻人：（a）那些关注自身健康需求的人；（b）那些试图在疾病管理与社交和归属感需求之间取得平衡的人；（c）那些在日常生活中为了获得同龄人的认可而将疾病置于次要地位的人。一方面，对患有慢性病的年轻人及其同龄人自我管理经历的多视角研究方法，另一方面，涉及一系列慢性病，使得我们能够以复杂而全面的方式分析这个问题。
