背景:本研究的目的是在炎症性肠病(IBD)导致造口的年轻人中就与造口相关的痛苦的自我管理的干预内容的优先级达成共识。目前对患有造口的年轻人的痛苦的识别和管理在临床环境中通常是次优的,并且需要改进的支持资源。
方法:通过在线视频会议进行了两次共识小组会议,使用名义分组技术。参与者生成,在李克特量表上进行评级并进行了讨论,纳入未来自我管理干预的主题。
结果:19名年轻人,年龄在19至33岁之间,因IBD而有造口,参加了两个小组会议之一。参与者分布在英格兰各地,苏格兰,和北爱尔兰。与会者提出了29个主题,其中七项达成共识≥80%,也就是说,7分Likert量表的平均值≥5.6。这些是:接受有造口手术经验的年轻人的建议;关于/解决有关浪漫关系的问题的建议,性和亲密关系;与造口手术有关的生育能力和怀孕信息;造口“黑客”,例如,关于服装的有用的日常提示,使袋子的变化更容易等等;反思和识别自己对手术的情绪反应;在夜间管理造口的技巧;以及处理与疾病和手术旅程有关的创伤。
结论:研究结果扩展了以前对年轻人造口手术经验的研究,通过就年轻人处理与手术相关的痛苦和与造口生活的优先事项达成共识。这些优先事项包括以前文献中没有报道的主题,包括对生育和怀孕信息的需求。研究结果将为患有IBD造口的年轻人提供自我管理资源的开发,并与该人群中与造口相关的困扰的临床管理有关。
■三位患者贡献者是本文的合著者,为研究设计做出了贡献,结果的解释和手稿的写作。该研究的患者和公众参与和参与咨询小组也在研究中发挥了不可或缺的作用。他们与研究小组进行了四次2小时的虚拟会议,对研究的目的和目的提供意见,招聘方法,和对发现的解释。该小组还就参与者的年龄范围提出了建议。有造口的年轻人的观点是本文报道的研究的核心组成部分,其目的是在患有IBD造口的年轻人中就自我管理造口手术相关痛苦的资源内容的优先事项达成共识。
BACKGROUND: The aim of this study was to gain
consensus among young people with a stoma due to inflammatory bowel disease (IBD) on the priorities for the content of an intervention for the self-management of stoma-related distress. The current identification and management of distress in young people with a stoma is often suboptimal in clinical settings and there is a need for improved support resources.
METHODS: Two
consensus group meetings were carried out via online video conferencing, using nominal group technique. Participants generated, rated on a Likert scale and discussed, topics for inclusion in a future self-management intervention.
RESULTS: Nineteen young people, aged 19-33, with a stoma due to IBD took part in one of two group meetings. Participants were located across England, Scotland, and Northern Ireland. Twenty-nine topics were generated by participants, seven of which reached
consensus of ≥80%, that is, a mean of ≥5.6 on a 7-point Likert scale. These were: receiving advice from young people with lived experience of stoma surgery; advice on/addressing concerns about romantic relationships, sex and intimacy; information about fertility and pregnancy related to stoma surgery; stoma \'hacks\', for example, useful everyday tips regarding clothing, making bag changes easier and so forth; reflecting on and recognising own emotional response to surgery; tips on managing the stoma during the night; and processing trauma related to the illness and surgery journey.
CONCLUSIONS: Findings extend previous research on young people\'s experiences of stoma surgery, by generating
consensus on young people\'s priorities for managing distress related to surgery and living with a stoma. These priorities include topics not previously reported in the literature, including the need for information about fertility and pregnancy. Findings will inform the development of a self-management resource for young people with an IBD stoma and have relevance for the clinical management of stoma-related distress in this population.
UNASSIGNED: Three patient contributors are co-authors on this paper, having contributed to the study design, interpretation of results and writing of the manuscript. The study\'s Patient and Public Involvement and Engagement advisory group also had an integral role in the study. They met with the research team for four 2-h virtual meetings, giving input on the aims and purpose of the study, recruitment methods, and interpretation of findings. The group also advised on the age range for participants. The views of young people with a stoma are the central component of the study reported in this paper, which aims to gain
consensus among young people with an IBD stoma on their priorities for the content of a resource to self-manage distress related to stoma surgery.