年轻人长大后患有直肠形或赫施普朗格病的经验:一个多中心定性深度访谈研究
Suganthi Rajasegaran1, Raymen Arviin Chandrasagran2, Shung Ken Tan3
1Division of Paediatric and Neonatal Surgery, Department of Surgery, Faculty of Medicine, University of Malaya, 50603, Kuala Lumpur, Malaysia.
Pediatric surgery international
|May 3, 2024
概括
青少年和年轻成年人患有直肠形 (ARM) 和希尔施普伦格形.
科学领域:
- 儿科外科手术 儿科外科手术
- 胃肠病学 胃肠病学
- 青少年医学 青少年医学
背景情况:
- 甲状腺形 (ARM) 和赫斯普朗氏病 (HD) 构成了终身挑战.
- 长期的身体,社会和情绪影响影响患者到成年.
- 对这些患者的过渡护理需要进一步调查.
研究的目的:
- 探索ARM和HD对青少年和年轻成年人的多方面的影响.
- 确定与个人福祉,家庭动态和未来前景相关的关键主题.
- 为优化过渡期护理策略的制定提供信息.
主要方法:
- 对16名被诊断患有ARM或HD的患者 (11-26岁) 进行了深入的一对一访谈.
- 利用对字面采访成绩单的专题分析来确定反复出现的模式.
- 数据收集继续进行,直到四个高等教育中心实现了主题和.
主要成果:
- 出现了五个主要主题:个人影响 (身体,情感,社会,学校),家庭影响,未来的感知,支持系统和过渡关怀问题.
- 患者报告说,他们面临着重大的身体,情绪和社会挑战.
- 只有女性患者对未来的生育能力表示担忧.
结论:
- 患有ARM和HD的青少年和年轻人面临着不断变化的挑战,包括性别特定的生育问题.
- 调查结果强调需要个性化护理和改进过渡支持.
- 这项研究为提高长期管理和患者福祉提供了基础.
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