School of Nursing and Midwifery, Queens University, Belfast, Ireland; Department of Paediatrics, Trinity College, Dublin, Ireland; Department of Neurodisability and Developmental Paediatrics, Children's Health Ireland at Tallaght, Dublin, Ireland.
School of Nursing and Midwifery, Queens University, Belfast, Ireland.
J Intellect Disabil. 2023 Dec;27(4):1032-1044. doi: 10.1177/17446295221106151. Epub 2022 Jun 14.
Globally it is estimated that Down syndrome occurs in 1 in 800 live births (Bull 2020). It has also been estimated that the incidence of Down syndrome occurs in 1/444 live births in the Republic of Ireland. Given the prevalence of Down syndrome births in Ireland and the fact that care is provided by the majority of parents at home, this qualitative study aimed to explore the experiences of Irish parents receiving a postnatal diagnosis of Down syndrome. A qualitative research approach was used through semi structured interviews. Eight parents of a baby diagnosed postnatally with Down syndrome participated in this study sharing their stories of their postnatal diagnosis experiences. Five overarching themes emerged using a descriptive thematic analysis; 1. prenatal screening, pregnancy and delivery; 2. how the diagnosis was delivered; 3. setting and emotional experiences; 4. moving on with the postnatal diagnosis and 5. Future recommendations from parents' perspectives. This study highlighted the importance of the need for clinicians to ensure that partners are present at the time of the disclosure, that ample time is allocated and that verbal and written communications are provided to parents using less medical jargon when delivering the postnatal diagnosis of Down syndrome. These reasonable adjustments could alleviate parental anxiety at this critical juncture in their lives. Online resources and support forums were also identified as an integral support for families on discharge from the maternity centres and in the early months and years.
据估计，全球每 800 例活产中就有 1 例唐氏综合征（Bull 2020）。据估计，爱尔兰共和国每 444 例活产中就有 1 例唐氏综合征。鉴于爱尔兰唐氏综合征出生率高，且大多数父母在家中提供护理，本定性研究旨在探讨爱尔兰父母在产后被诊断为唐氏综合征的经历。本研究采用半结构化访谈的定性研究方法，邀请 8 名婴儿在产后被诊断为唐氏综合征的父母分享他们的产后诊断经历。使用描述性主题分析方法得出了 5 个总体主题：1. 产前筛查、妊娠和分娩；2. 诊断的传递方式；3. 环境和情绪体验；4. 接受产后诊断；5. 父母从自身角度出发提出的未来建议。本研究强调了临床医生需要确保伴侣在披露时在场、分配充足时间以及使用较少医学术语为父母提供口头和书面沟通的重要性，以便在传递唐氏综合征的产后诊断时。这些合理的调整可以减轻父母在这个关键时刻的焦虑。在线资源和支持论坛也被确定为从产妇中心出院后以及在早期几个月和几年中对家庭的重要支持。
