Stock Nicola Marie, Costa Bruna, Williams Jennifer R, Martindale Anna
1 Centre for Appearance Research, University of the West of England, Bristol, United Kingdom.
2 South Thames Cleft Service, London, United Kingdom.
Cleft Palate Craniofac J. 2019 Oct;56(9):1149-1156. doi: 10.1177/1055665619830884. Epub 2019 Apr 24.
In high-income countries, many cases of cleft lip are now identified at the 18- to 21-week pregnancy scan. The manner in which a diagnosis is communicated is vital for long-term parental well-being, yet previous studies have been indicative of parental dissatisfaction. The aims of the present study were to examine the experiences of parents who received an antenatal diagnosis of cleft lip in their unborn child and to offer pragmatic suggestions for improving the diagnostic experience in practice.
An online, mixed-methods survey was designed and distributed by the Cleft Lip and Palate Association. Data from 574 eligible parents were analyzed using descriptive statistics and inductive content analysis.
Although survey responses indicated positive diagnostic experiences overall, respondents perceived a lack of sensitivity among sonographers, long waiting times between referrals, and a lack of appropriate and reliable information. Respondents also reported a number of misconceptions about cleft lip and/or palate and its prognosis, as well as a variety of initial concerns about their own ability to cope with the anticipated challenges.
Findings emphasize the importance of providing accurate and individualized information to prospective parents, in a sensitive manner, so they can adjust to their child's diagnosis and prepare for the birth appropriately. Given that antenatal screening for cleft lip is becoming more fully integrated into routine practice, more training for health-care professionals, improved access to reliable information in a variety of formats, and stronger links between local hospitals and specialist cleft services may be needed.
在高收入国家，现在许多唇裂病例在妊娠18至21周的超声检查时被发现。诊断信息的传达方式对父母的长期幸福感至关重要，但先前的研究表明父母对此并不满意。本研究的目的是调查那些在产前检查中得知未出生孩子患有唇裂的父母的经历，并为在实际操作中改善诊断体验提供切实可行的建议。
唇腭裂协会设计并分发了一项在线混合方法调查。使用描述性统计和归纳性内容分析法对574名符合条件的父母的数据进行了分析。
尽管调查反馈总体上表明诊断体验是积极的，但受访者认为超声检查人员缺乏敏感性，转诊之间等待时间长，并且缺乏适当和可靠的信息。受访者还报告了对唇裂和/或腭裂及其预后的一些误解，以及对自己应对预期挑战能力的各种最初担忧。
研究结果强调了以前瞻性的方式为父母提供准确和个性化信息的重要性，以便他们能够适应孩子的诊断并为孩子的出生做好适当准备。鉴于产前唇裂筛查正越来越全面地融入常规医疗实践，可能需要为医疗保健专业人员提供更多培训，以更多样化的形式改善获取可靠信息的途径，并加强当地医院与专业腭裂服务机构之间的联系。
