Currie Genevieve, Szabo Joanna
School of Nursing and Midwifery, Faculty of Health, Community and Education, Mount Royal University, Calgary, Canada.
Child Care Health Dev. 2019 Jan;45(1):96-103. doi: 10.1111/cch.12628. Epub 2018 Nov 8.
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.
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.
An interpretive phenomenological approach was applied in this inquiry. Fifteen parents of children with rare diseases participated in semistructured interviews.
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.
This paper offers suggestions for better supporting families living with rare disease as well as possible avenues of future research.
罕见病患儿的父母在满足医疗和社会护理需求方面面临普遍挑战。现有关于父母照顾罕见病患儿经历的研究有限。本文为更好地支持罕见病患者家庭提供了建议以及未来可能的研究方向。
罕见病患儿的父母在满足医疗和社会护理需求方面面临普遍挑战。现有关于父母照顾罕见病患儿经历的研究有限。
本研究采用解释现象学方法。15位罕见病患儿的父母参与了半结构化访谈。
解释性主题分析表明，由于疾病的罕见性以及对该疾病普遍缺乏了解，除了“残疾”之外，与“罕见性”相关的家庭负担也有所增加。还揭示了四点见解：（a）父母通常比医疗保健提供者更了解疾病，这导致了作为专家和父母在沟通与协作方面的纠葛；（b）照顾罕见病患儿的提供者和服务之间缺乏护理协调；（c）获得政府支持方面存在差距；（d）由于护理分散，父母必须通过兼顾倡导者、病例经理和医疗导航员等多种角色来填补上述差距。
本文为更好地支持罕见病患者家庭提供了建议以及未来可能的研究方向。
