ABSTRACT

Purpose: 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.

Methods: Hermeneutic phenomenology was used for the data analysis. Fifteen parents participated in semi-structured interviews.

Results: 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.

Conclusion: 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.

摘要

目的：父母对于照顾罕见的神经发育障碍儿童的复杂护理需求的经验尚未得到充分了解。父母努力在健康，社会和家庭系统之内和之间满足孩子的医疗，行为和社会需求。这项研究的目的是探讨父母对患有罕见神经发育障碍儿童的医疗和社会护理需求的护理经验。

方法：采用诠释学现象学进行数据分析。15名父母参加了半结构化访谈。

结果：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在社会领域内的误解和脆弱性，（b）社交禁忌和污名很少见，（c）与卫生和社会系统分离的零散护理受影响的家庭；（d）在管理日常护理时会出现朋友和家人的不理解。

结论：在支持父母照顾有复杂需求的孩子方面，需要新的解释和对父母经历的更多理解。了解父母的经历可以减少社会隔离和排斥，并减轻医疗，社会和家庭系统内部和之间的适当和支持性做法与服务。