医疗保健专业人员和家长在确诊检测阶段的经历：对英国扩大新生儿筛查试点的定性研究。
Healthcare professionals' and parents' experiences of the confirmatory testing period: a qualitative study of the UK expanded newborn screening pilot.
作者信息
Moody Louise, Atkinson Lou, Kehal Isher, Bonham James R
机构信息
School of Art and Design, Coventry University, Priory Street, Coventry, CV1 5FB, UK.
Centre for Applied Biological & Exercise Sciences, Coventry University, Coventry, CV1 5FB, UK.
出版信息
BMC Pediatr. 2017 May 8;17(1):121. doi: 10.1186/s12887-017-0873-1.
BACKGROUND
With further expansion of the number of conditions for which newborn screening can be undertaken, it is timely to consider the impact of positive screening results and the confirmatory testing period on the families involved. This study was undertaken as part of a larger programme of work to evaluate the Expanded Newborn Screening (ENBS) programme in the United Kingdom (UK). It was aimed to determine the views and experiences of healthcare professionals (HCPs) and parents on communication and interaction during the period of confirmatory testing following a positive screening result.
METHODS
Semi-structured interviews were undertaken with parents of children who had received a positive ENBS result and HCPs who had been involved with the diagnosis and support of parents. Ten parents and 11 healthcare professionals took part in the in-depth interviews. Questions considered the journey from the positive screening result through confirmatory testing to a confirmed diagnosis and the communication and interaction between the parents and HCPs that they had been experienced. Key themes were identified through thematic analysis.
RESULTS
The results point to a number of elements within the path through confirmatory testing that are difficult for parents and could be further developed to improve the experience. These include the way in which the results are communicated to parents, rapid turnaround of results, offering a consistent approach, exploring interventions to support family relationships and reviewing the workload and scheduling implications for healthcare professionals.
CONCLUSIONS
As technology enables newborn screening of a larger number of conditions, there is an increasing need to consider and mediate the potentially negative effects on families. The findings from this study point to a number of elements within the path through confirmatory testing that are difficult for parents and could be further developed to benefit the family experience.
背景
随着新生儿筛查可涵盖的疾病数量进一步增加，适时考虑阳性筛查结果及确诊检测期对相关家庭的影响十分必要。本研究是评估英国扩大新生儿筛查（ENBS）项目的一项更大规模工作的一部分。其目的是确定医护人员（HCPs）和家长对阳性筛查结果后确诊检测期间沟通与互动的看法和经历。
方法
对ENBS结果呈阳性儿童的家长以及参与家长诊断和支持工作的医护人员进行了半结构化访谈。十名家长和十一名医护人员参与了深入访谈。问题涉及从阳性筛查结果到确诊检测再到确诊诊断的整个过程，以及他们所经历的家长与医护人员之间的沟通与互动。通过主题分析确定了关键主题。
结果
结果表明，确诊检测过程中有一些因素对家长来说存在困难，可进一步改进以提升体验。这些因素包括向家长传达结果的方式、结果的快速反馈、提供一致的方法、探索支持家庭关系的干预措施以及审查对医护人员工作量和日程安排的影响。
结论
随着技术使更多疾病的新生儿筛查成为可能，越来越有必要考虑并减轻对家庭的潜在负面影响。本研究结果指出了确诊检测过程中一些对家长来说存在困难的因素，可进一步改进以改善家庭体验。
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