Healthcare Professionals' and Parents Experiences of the Confirmatory Testing Period: A qualitative study of the UK Expanded Newborn Screening Pilot

Louise Moody, Lou Atkinson, Isher Kehal, James Bonham

Research output: Contribution to journalArticle

3 Citations (Scopus)
22 Downloads (Pure)

Abstract

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. 10 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.
Original languageEnglish
Pages (from-to)(in press)
JournalBMC Pediatrics
Volume(in press)
DOIs
Publication statusPublished - 8 May 2017

Keywords

  • Expanded newborn screening
  • Confirmatory testing
  • Parents experiences
  • HCPs experiences
  • Communication of screening results

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