探索克罗恩病的儿科观点:对知识,生活经验和自我管理的定性研究
Sara Azevedo1,2, Luís Rodrigues1,2, Ana Isabel Lopes1,2
1Gastroenterology Unit, Pediatrics Department, Santa Maria University Hospital-ULS Santa Maria, Academic Medical Centre of Lisbon; 1649-028 Lisbon, Portugal.
儿科克朗氏病 (CD) 显著影响青少年的情绪健康和日常生活,尽管有良好的疾病知识. 专注于心理健康的整体护理对于有效的自我管理和过渡到成人护理至关重要.
科学领域:
- 儿科胃肠病学 儿科胃肠病学
- 青少年健康 青少年健康
- 定性研究是指质量研究.
背景情况:
- 儿科克朗氏病 (CD) 超出了身体症状,影响了青少年的情绪状态,社会互动和发展.
- 在儿科CD中有效的疾病管理需要了解对患者生活的多方面的影响.
研究的目的:
- 探索患有克罗恩病的青少年的生活经历.
- 确定影响青少年对CD自我管理的动机的因素.
主要方法:
- 一个描述性的,横截面的定性研究,使用半结构化的,自主管理的在线问卷.
- 该研究包括10名青少年,他们被诊断患有CD超过三年,从三级儿科胃肠病学中心招募.
- 对开放式答复进行了主题分析,以布劳恩和克拉克框架为指导.
主要成果:
- 六个关键主题出现了:疾病知识,情绪反应,应对,社会支持,日常生活/学校影响以及过渡到成人护理.
- 青少年表现出强大的疾病素养和应对能力,但在复发期间经历了情绪上的痛苦,焦虑和恐惧.
- 虽然60%的人独立管理他们的疾病,但人们担心未来的限制和过渡到成人护理.
结论:
- 儿科CD患者面临着重大的情绪和日常生活挑战,即使有良好的疾病知识.
- 整体护理,强调心理社会福祉,心理健康评估和患者的观点,对于管理儿科CD至关重要.
- 非侵入性监测和专注于向成人护理过渡是综合护理的重要组成部分.
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