跳至主要内容
临床试验/ISRCTN15330120
ISRCTN15330120暂停未知

Rethinking Strategies for Positive Newborn Screening Result (NBS+) Delivery (ReSPoND): A process evaluation of co-designing interventions to minimise impact on parental emotional well-being and stress

City, University of London0 个研究点目标入组 160 人开始时间: 2018年1月17日最近更新:
适应症

试验速览

阶段
未知
状态
暂停
入组人数
160

研究概览

简要总结

2019 Protocol article in https://www.ncbi.nlm.nih.gov/pubmed/31508239 protocol (added 12/09/2019) 2020 Other publications in https://pubmed.ncbi.nlm.nih.gov/33004391/ Health professionals' experiences (added 07/10/2020) 2021 Other publications in https://pubmed.ncbi.nlm.nih.gov/34452966/ Process evaluation (added 01/09/2021) 2020 Interim results article in https://pubmed.ncbi.nlm.nih.gov/33310815/ Assessment of current practice (added 31/10/2022) 2022 Results article in https://pubmed.ncbi.nlm.nih.gov/35881727/ (added 31/10/2022)

研究设计

研究类型
Interventional

入排标准

性别
All

入选标准

  • Parents of children who have received a NBS+ result in the previous 3-12 months including true positives, false positives and children who later have a cystic fibrosis screen positive, inconclusive diagnosis (CFSPID). This time frame has been chosen as the focus for this research based on feedback from parents of children who have previously received a NBS+ result. It has also been demonstrated that positive NBS can impact on child-parent relationships during the first year of life.
  • Health professionals:
  • 1. Staff employed in NBS laboratories and involved in the processing of NBS+ results
  • 2. Staff who have been involved in communicating NBS+ results to parents in the last 6 months.

排除标准

  • 1. Parent of children who have received a negative NBS result
  • 2. Parents of children with co-morbidities that are likely to influence their perception of receiving the positive NBS result
  • 3. Parents whose baby has died prior to being approached to be involved in the study
  • 4. Inability of parents to understand and give informed consent
  • 5. Parents whose recruitment is contraindicated on psychosocial grounds (identified by their health visitor or specialist nurse)
  • Health professionals:
  • 1. Staff who have not been involved in communicating positive NBS results to parents in the last 6 months
  • 2. Staff who have personal experience of receiving a positive NBS result

研究者

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