"It is like a jungle gym, and everything is under construction": The parent's perspective of caring for a child with a rare disease
"It is like a jungle gym, and everything is under construction": The parent's perspective of caring for a child with a rare disease
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DOI：
10.1111/cch.12628
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发表时间：
2019-01-01
影响因子：
1.9
通讯作者：
Szabo, Joanna
中科院分区：
文献类型：
--
作者：
Currie, Genevieve;Szabo, Joanna
患有罕见病儿童的父母在满足医疗和社会护理需求方面面临普遍挑战。关于父母照顾患有罕见疾病的孩子的经历的现有研究是有限的。本文对如何更好地支持罕见病家庭提出了建议，并提出了未来研究的可能途径。背景罕见病儿童的父母在满足医疗和社会护理需求方面面临着普遍的挑战。关于父母照顾患有罕见疾病的孩子的经历的现有研究是有限的。方法采用解释现象学方法进行研究。15位罕见病患儿的父母参加了半结构化访谈。结果解释性专题分析显示，由于该病的罕见性和对该病的整体知识缺乏，除了“残疾”外，“罕见”还增加了家庭的负担。报告还揭示了四点见解：(a)父母往往比医疗保健提供者更了解这种疾病，这导致专家和父母之间的沟通和协作出现混乱；照料罕见疾病儿童的提供者和服务机构之间缺乏协调；(c)在获得政府支助方面存在差距；(d)由于支离破碎的护理，父母必须同时扮演多种角色，包括倡导者、病例管理者和医疗导航员，来填补上述空白。结论本文为更好地支持罕见病家庭提供了建议，并为今后的研究提供了可能的途径。
Descriptive title Parents of children with rare diseases face pervasive challenges in meeting medical and social care needs. Existing research on the parents' experience of caring for a child with a rare disease is limited. This paper offers suggestions for better supporting families living with rare disease as well as possible avenues of future research. Background Parents of children with rare diseases face pervasive challenges in meeting medical and social care needs. Existing research on the parent's experience of caring for a child with a rare disease is limited. Methods An interpretive phenomenological approach was applied in this inquiry. Fifteen parents of children with rare diseases participated in semistructured interviews. Results Interpretive thematic analysis revealed that due to the rarity of the disease and an overall lack of knowledge of the disease, there is an increase in the burden on the family in relation to "rarity" in addition to "disability." Four insights were also revealed: (a) Parents often know more about the disease then Health Care providers, and this leads to entanglements in communication and collaboration as experts and parents; (b) there is lack of coordination of care between providers and services caring for children with rare diseases; (c) there is a gap in accessibility to government supports; and (d) due to fragmented care, parents must fill the aforementioned gaps by juggling multiple roles including that of advocate, case manager, and medical navigator. Conclusion This paper offers suggestions for better supporting families living with rare disease as well as possible avenues of future research.