炎症性肠病青少年向成人过渡期准备困境的质性研究
摘要：
目的 了解炎症性肠病青少年在向成人过渡期准备过程中的困境，为制订以患者为中心的过渡期护理干预方案提供依据。方法 应用现象学研究方法，采用目的抽样法，于2022年9月—12月选取在上海市2所三级甲等医院消化内科就诊的15例炎症性肠病青少年作为研究对象，对其进行半结构式深入访谈，采用Colaizzi 7步分析法对访谈资料进行分析。结果 共提炼出4个主题。①自我应对困难，包括难以适应就医环境转变、难以适应就医角色转变、难以应对负性情绪困扰、难以满足日常生活中的特殊需求。②家庭支持受限，包括家庭经济负担重、家庭照护者过度参与、家庭韧性不足。③医疗支持不足，包括专业人员支持有限、信息共享受限。④社会支持缺乏，包括社会支持的适用性和可及性有限、社会认知和认同感不足。结论 炎症性肠病青少年在向成人过渡期准备过程中面临多重困境。建议护理人员制订完善、个性化的过渡期准备计划，开展以向成人过渡为导向的家庭健康教育，完善医疗支持体系，进一步强化社会支持，提升青少年向成人过渡期准备水平。
关键词: 炎症性肠病, 青少年, 过渡准备, 困境, 质性研究, 儿科护理学
Abstract:
Objective To understand the dilemmas experience of adolescents with inflammatory bowel disease （IBD） as they transit towards adulthood，and to provide the basis for the development of patient-centered transition nursing intervention program. Methods With the application of phenomenological research method in qualitative research and purposive sampling method，from September to December 2022，15 adolescents with IBD from the department of gastroenterology in 2 tertiary A hospitals in Shanghai for semi-structured in-depth interview，and the interview data were analyzed by Colaizzi 7-step analysis method. Results 4 themes were extracted. ①Self-coping dilemma，including difficulty in adapting to changes in the medical environment，difficulty in adapting to changes in medical roles，difficulty in coping with negative emotional distress，difficulty in meeting the special needs of daily life. ②Family support dilemma，including heavy family financial burden，excessive participation of family caregivers，and insufficient family resilience. ③Medical assistance dilemma，including limited professional assistance and limited information sharing. ④Social support dilemma，including the limited applicability and accessibility of social support，insufficient social cognition and identity. Conclusion Adolescents with IBD face multiple dilemmas as they move towards adulthood. It is suggested that nursing staff should formulate a perfect personalized transition plan，carry out transition-oriented family health education，improve the medical assistance system，further strengthen social support，and improve the level of transition readiness for the adolescents towards adults.
Key words: Inflammatory Bowel Disease, Adolescent, Transition Readiness, Dilemmas, Qualitative Research, Pediatric Nursing
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