University College Cork, College Road, Cork, Ireland.
Enable Ireland Cork, Lavanagh Centre, Curraheen Road, Co., Cork, Ireland; University College Dublin, Belfield, Dublin 4, Ireland.
Res Dev Disabil. 2024 Aug;151:104789. doi: 10.1016/j.ridd.2024.104789. Epub 2024 Jul 2.
Ehlers-Danlos Syndrome (EDS) is a rare group of connective tissue disorders and, as such, the diagnosis can often be delayed. While emerging research indicates that there may be adverse psychosocial consequences for the child, little is known about the processes behind such outcomes, including the psychosocial impact of this rare disease on family life.
To extend our understanding, we examined the lived experiences of parenting a child with EDS.
Four parents recruited from a specialist child development clinic participated in semi-structured interviews. Data were analysed using Interpretative Phenomenological Analysis RESULTS: Three superordinate themes were identified: (1) Challenges Associated with hEDS, (2) Interactions with Professionals and (3) "Pulling and Pacing": Life with EDS.
This is one of the first qualitative studies to gain an insight into the lived experiences of parenting a child with EDS. Findings had systemic implications. Specifically, we demonstrate the need for raising awareness in health and educational professionals about how to better support families to support the child, as well as the importance of promoting effective advocacy skills in parents.
埃勒斯-当洛斯综合征（EDS）是一组罕见的结缔组织疾病，因此，其诊断常常会被延误。尽管新兴研究表明，儿童可能会出现不良的心理社会后果，但对于这一结果背后的过程知之甚少，包括这种罕见疾病对家庭生活的心理社会影响。
为了进一步了解这一情况，我们研究了患有 EDS 的儿童的父母的生活经历。
从一家专门的儿童发育诊所招募了 4 名家长参加半结构化访谈。使用解释现象学分析方法对数据进行分析。
确定了三个上位主题：（1）hEDS 相关的挑战，（2）与专业人员的互动，以及（3）“拉扯和调整”：EDS 生活。
这是首次深入了解患有 EDS 的儿童的父母的生活经历的定性研究之一。研究结果具有系统意义。具体而言，我们证明了有必要提高卫生和教育专业人员的认识，了解如何更好地支持家庭来支持孩子，以及提高父母有效倡导技能的重要性。
