School of Nursing and Midwifery, Faculty of Health, Community and Education, Mount Royal University, Calgary, Alberta, Canada.
Int J Qual Stud Health Well-being. 2020 Dec;15(1):1725362. doi: 10.1080/17482631.2020.1725362.
: The experiences of parents caring for the complex care needs of children with rare neurodevelopmental disorders are not well understood. Parents struggle to meet their children's medical, behavioural, and social needs within and across health, social, and family systems. The purpose of this study was to explore the parents' experience of caring for medical and social care needs for children with rare neurodevelopmental disorders.: Hermeneutic phenomenology was used for the data analysis. Fifteen parents participated in semi-structured interviews.: Interpretive analysis revealed four insights: (a) difference in children's behaviours and disease manifestations led to misunderstanding and vulnerability within social domains, (b) social taboo and stigma were experienced with rarity, (c) fragmented disconnected care from health and social systems impacted families, and (d) incomprehension from friends and family occurs when managing daily care.: New interpretations and increased understanding of parents' experiences are required in supporting parents caring for children with complex needs. Understanding parents' experiences could reduce social isolation and exclusion, and mitigate appropriate and supportive practices and services within and across medical, social, and family systems.
: 父母照顾患有罕见神经发育障碍儿童的复杂护理需求的经验尚未得到充分理解。父母在医疗、行为和社会系统内和跨系统努力满足子女的医疗、行为和社会需求。本研究的目的是探讨父母照顾患有罕见神经发育障碍儿童的医疗和社会护理需求的体验。: 诠释现象学用于数据分析。15 名家长参加了半结构化访谈。: 解释性分析揭示了四个见解：（a）儿童行为和疾病表现的差异导致社会领域的误解和脆弱性，（b）稀有疾病带来的社会禁忌和耻辱感，（c）医疗和社会系统提供的碎片化、不连贯的护理对家庭的影响，以及（d）在管理日常护理时，朋友和家人的不理解。: 为了支持照顾有复杂需求的儿童的父母，需要对父母的体验进行新的解释和更深入的了解。了解父母的经历可以减少社会孤立和排斥，并在医疗、社会和家庭系统内和跨系统内减轻适当和支持性的实践和服务。
