患有罕见病的生活 - - 儿科患者及其家长的经历和需求
Stefanie Witt1, Katharina Schuett2, Silke Wiegand-Grefe3
1Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Martinistraße 52 W 26, Hamburg, 20246, Germany. s.witt@uke.de.
Orphanet journal of rare diseases
|August 11, 2023
概括
照顾患有罕见疾病 (RD) 的孩子显著影响家庭生活和心理健康. 家庭需要更好地获得信息和心理社会支持服务,以应对日常挑战和医疗保健系统的复杂性.
科学领域:
- 儿科 儿科 儿科
- 遗传学 遗传学 是一个
- 心理学 心理学 心理学
背景情况:
- 罕见疾病 (RD) 对家庭生活质量和心理健康构成重大挑战.
- 信息缺陷和有限的护理选择导致了受RD影响的家庭的无助和心理痛苦.
- 了解患者和家长的生活经历和需求对于制定有效的支持策略至关重要.
研究的目的:
- 确定患者和患有罕见疾病 (RD) 儿童的父母的日常生活经历.
- 评估医疗保健系统的经验,并确定对心理社会护理的需求.
- 为心理社会支持服务量身定制的实施策略的制定提供信息.
主要方法:
- 作为国家多中心研究"罕见病儿童及其家属网络 (CARE-FAM-NET) "的一部分进行的分析.
- 进行了半结构化的电话采访,对74名患有RD的儿童的父母 (0-17岁) 和15名患有RD的年轻人 (12-21岁) 进行了采访.
- 采访成绩单使用专注的采访分析来分析采访成绩单,以确定经验和支持需求.
主要成果:
- 罕见疾病对日常和社会生活产生负面影响,影响心理健康.
- 由于长时间的诊断旅程和专业人员缺乏研发和开发知识的缺乏,家庭经历了相当大的压力.
- 人们对心理社会支持服务的认识和获取是有限的,尽管支持小组等现有服务是有益的;障碍包括时间和社会法律问题.
结论:
- 罕见疾病给所有家庭成员带来了巨大的挑战,需要有针对性的支持.
- 患者和家长需要特定的支持,以解决日常生活,医疗和心理社会护理需求.
- 基本的改进包括培训医疗保健专业人员,确保可访问的护理服务,并提供实际援助.
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