“我不喜欢小题大做”:一项基于定性访谈的研究,探索影响年轻人是否告诉或不告诉他们的朋友他们的IBD的因素。

International Journal of Chronic Diseases Pub Date : 2020-06-11 eCollection Date: 2020-01-01 DOI:10.1155/2020/1059025
Bernie Carter, Alison Rouncefield-Swales, Lucy Bray, Lucy Blake, Stephen Allen, Chris Probert, Kay Crook, Pamela Qualter
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引用次数: 14

摘要

炎症性肠病(IBD)描述了包括克罗恩病和溃疡性结肠炎在内的一组疾病。与某些慢性疾病不同,IBD在或多或少的程度上对其他人来说是隐藏的或不可见的,这使得病情得以隐瞒,特别是当耻辱与该病有关时。隐藏或不披露是身份管理的一种手段。慢性疾病的披露不是一个单一的事件,它取决于许多因素。很少有文献专门讨论与患有IBD的儿童和年轻人有关的耻辱和/或披露。在参与性框架内,通过解释性描述和访谈、友谊地图和照片进行了深入的定性研究。公众和患者的参与和参与(PPIE)在整个(开始到传播)研究中进行。年龄在14-25岁之间的患有IBD的年轻人参加了更大规模研究的调查阶段,他们自我选择参加了广泛关注友谊和社会联系感受的访谈。数据分析使用迭代,解释的方法。初步的主题被提出,这些主题被进一步探讨,然后关于友谊的初步理论联系被提出。一个重要的主题是信息披露。青年31人(男16人,女15人),平均年龄18.7岁;24名克罗恩氏症患者,7名结肠炎患者)参加了采访(其中5人制作了友谊地图,6人使用了照片)。三个互不相干但又相互联系的主题产生了,揭示了年轻人的披露经历:告诉或不告诉;控制信息流:谁、何时、说什么、怎么说;对讲述的反应和反应:预期的和实际的。对许多年轻人来说,决定告诉朋友自己患有炎症性肠病是一项挑战。控制信息披露并不总是可能的,而且潜在的后果可能会让人觉得有风险。然而,大多数年轻人都有积极的倾诉经历,并得到了朋友和恋人的支持。大多数年轻人淡化了他们IBD的严重性,透露了他们病情的某些方面,目的是维持他们的自我认同。只有一名年轻人得到了专业支持,得以公开。提供支持和机会,讨论是否、何时、谁以及如何告诉朋友,以及可能的风险和益处是什么,这些都可以纳入年轻人与卫生专业人员在常规诊所就诊中进行的持续和更广泛的以人为本的对话。
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"I Don't Like to Make a Big Thing out of It": A Qualitative Interview-Based Study Exploring Factors Affecting Whether Young People Tell or Do Not Tell Their Friends about Their IBD.

Inflammatory Bowel Disease (IBD) describes a group of conditions that includes Crohn's disease and ulcerative colitis. Unlike some chronic conditions, to a greater or lesser extent, IBD is hidden from or invisible to others which enables concealment of the condition, especially when stigma is associated with the condition. Concealment or nondisclosure allows a means of identity management. Disclosure of a chronic condition is not a single event, and it is dependent on many factors. There is little literature that specifically addresses stigma and/or disclosure in relation to children and young people with IBD. An in-depth qualitative study was undertaken, framed by Interpretive Description and using interviews, friendship maps, and photographs within a participatory framework. Public and patient involvement and engagement (PPIE) was undertaken throughout (inception to dissemination) the study. Young people aged 14-25 years with IBD who had participated in the survey phase of the larger study self-selected to participate in interviews that focused broadly on friendship and feelings of social connectedness. Data were analysed using an iterative, interpretive approach. Preliminary themes were developed and these were explored further, and then tentative theoretical connections about friendship were developed. One superordinate theme focused on disclosure. Thirty-one young people (16 males, 15 females, mean age 18.7 years; 24 Crohn's, 7 colitis) participated in the interviews (of these, five created friendship maps and six utilised photographs). Three discrete, but interlinked, themes were generated, revealing young people's experiences of disclosure: to tell or not to tell; controlling the flow: the who, when, what, and how of telling; and reactions and responses to telling: anticipated and actual. Decisions about telling friends about having IBD are challenging for many young people. Having control over disclosure is not always possible, and the potential consequences can feel risky. However, most young people had positive experiences of disclosure and gained support from friends and romantic partners. Most young people downplayed the seriousness of their IBD, revealing some facets of their condition, aiming to sustain their self-identity. Only one young person had been given professional support to disclose. Provision of support and opportunities to discuss whether, when, who, and how to tell friends and what the risks and benefits may be is something that could be woven into an ongoing and wider person-centred dialogue between young people and health professionals within routine clinic visits.

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