Flick Uwe, Röhnsch Gundula
Department of Education and Psychology, Qualitative Social and Education Research, Freie Universität Berlin, Berlin, Germany.
Disabil Rehabil. 2025 Jun;47(11):2778-2789. doi: 10.1080/09638288.2024.2400598. Epub 2024 Sep 11.
Many young adults living with chronic illness fear being perceived as different by their peers and excluded from social activities. This forces them to consider whether to disclose or conceal their illness. This article analyses young adults' disclosure strategies and links them to peers' understanding of illness.
The explorative study is based on episodic interviews with sixty young adults living with chronic illnesses (type 1 diabetes, cancer, chronic inflammatory bowel disease or a rare disease) and thirty peers. The interviews were thematically coded. The young adults' statements were compared to the peer perspectives on a case-by-case basis.
We identified three groups of young adults: 1) those who are generally open with peers about their illness and its subjective meaning; 2) those who share selected health-related information's with selected peers; 3) those who refrain from active disclosure and are unsure how they might talk about their illness when it becomes apparent. Our findings also indicate that peers differ in the sophistication of their illness perceptions and the meaning they ascribe to living with a chronic illness.
Trainings should target both young adults and peers, and should assist both sides in talking about (serious) chronic illness.
许多患有慢性病的年轻人担心被同龄人视为异类并被排除在社交活动之外。这迫使他们考虑是披露还是隐瞒自己的病情。本文分析了年轻人的披露策略，并将其与同龄人对疾病的理解联系起来。
这项探索性研究基于对60名患有慢性病（1型糖尿病、癌症、慢性炎症性肠病或罕见病）的年轻人和30名同龄人的情景访谈。访谈进行了主题编码。年轻人的陈述逐案与同龄人的观点进行了比较。
我们确定了三组年轻人：1）那些通常会向同龄人坦诚自己的病情及其主观意义的人；2）那些与特定同龄人分享特定健康相关信息的人；3）那些避免主动披露病情且不确定当病情明显时该如何谈论自己疾病的人。我们的研究结果还表明，同龄人在对疾病的认知复杂性以及他们赋予慢性病生活的意义方面存在差异。
培训应针对年轻人和同龄人双方，并应帮助双方谈论（严重的）慢性病。
