背景:针对患有炎症性肠病(IBD)的青少年从儿科到成人医疗保健系统的过渡的开发和实施应考虑利益相关者的看法。本研究旨在从患者的角度探讨影响中国青少年IBD转型的因素,父母,和医疗保健提供者。
方法:进行描述性定性研究。目的抽样被用来招募36名参与者,包括13个病人,13父母,和10个供应商,来自三级儿科IBD中心,三级成人IBD中心,浙江省中国克罗恩病与结肠炎基金会,中国。个人半结构化访谈用于收集有关促进者和过渡过程障碍的数据。传统的内容分析用于分析访谈记录。
结果:确定了9个主要主题。年轻的患者,疾病持续时间延长,严重疾病,高考等学术压力,疾病接受度低,有限的过渡意识,低自我效能感,转型沟通不畅,医疗转型体系不完善是障碍。而患者对父母抱有负罪感的心态;父母文化程度低,工作时间紧张,高水平的疾病接受度,和亲子分离的情况;具有高度过渡意识的利益相关者,高转型自我效能感,和有效的过渡沟通充当促进者。此外,在过渡期间,社区支持和医院指南服务也是促成因素。
结论:本研究为影响中国青少年IBD患者转变的因素提供了全面的见解。这个过程不断受到利益相关者的影响,社区,以及医疗保健环境和政策。识别这些因素为医疗保健提供者提供了制定和实施有针对性的过渡干预措施的参考。
BACKGROUND: The development and implementation of the transition from pediatric to adult healthcare systems for adolescents with inflammatory bowel disease (IBD) should consider stakeholders\' perceptions. This study aimed to explore the factors influencing the transition of Chinese adolescents with IBD from the perspectives of patients, parents, and healthcare providers.
METHODS: A descriptive qualitative research was conducted. Purposive sampling was used to recruit 36 participants, including 13 patients, 13 parents, and 10 providers, from a tertiary pediatric IBD center, a tertiary adult IBD center, and the
China Crohn\'s & Colitis Foundation in Zhejiang Province,
China. Individual semi-structured interviews were used to collect data on facilitators and barriers to the transition process. Conventional content analysis was used to analyze the interview transcripts.
RESULTS: Nine primary themes were identified. Patients with young age, prolonged disease duration, severe disease, academic pressures such as the Gaokao, low level of disease acceptance, limited transition consciousness, low self-efficacy, poor transition communication, and inadequate medical transition system serve as barriers. While patients with the mentality of guilt towards their parents; parents with low education levels and intensive work schedules, high levels of disease acceptance, and situations of parent-child separation; stakeholders with high transition consciousness, high transition self-efficacy, and effective transition communication act as facilitators. Furthermore, community support and hospital guide services were also contributing factors during the transition.
CONCLUSIONS: This study offers comprehensive insights into the factors affecting the transition of Chinese adolescent IBD patients. The process is continuously influenced by stakeholders, community, and healthcare environments and policies. Identifying these factors provides healthcare providers with a reference for developing and implementing targeted transition interventions.