Healthcare Professionals' and Parents Experiences of the Confirmatory Testing Period: A qualitative study of the UK Expanded Newborn Screening Pilot
- Submitting institution
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Coventry University
- Unit of assessment
- 32 - Art and Design: History, Practice and Theory
- Output identifier
- 19387917
- Type
- D - Journal article
- DOI
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10.1186/s12887-017-0873-1
- Title of journal
- BMC Pediatrics
- Article number
- 121
- First page
- -
- Volume
- 17
- Issue
- -
- ISSN
- 1471-2431
- Open access status
- Compliant
- Month of publication
- May
- Year of publication
- 2017
- URL
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- Supplementary information
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- Request cross-referral to
- -
- Output has been delayed by COVID-19
- No
- COVID-19 affected output statement
- -
- Forensic science
- No
- Criminology
- No
- Interdisciplinary
- Yes
- Number of additional authors
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3
- Research group(s)
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-
- Proposed double-weighted
- No
- Reserve for an output with double weighting
- No
- Additional information
- Expanded Newborn Screening for five additional inherited metabolic diseases was introduced in the UK as a national pilot between July 2013 and August 2014. The pilot would inform the UK National Screening Committee’s decision as to whether screening for additional conditions would be taken up nationally. In support of the UK Expanded Newborn Screening pilot, Moody undertook a study to evaluate parental experience of receiving positive screening results, as well as healthcare professional’s experiences of supporting parents and communicating the results to inform the future design of the service.
Semi-structured interviews were undertaken with 10 parents of children who had received a positive screening result and 11 HCPs who had been involved with the diagnosis and support of parents. Through thematic analysis a number of elements within the path through screening and confirmatory testing were identified that could be further developed to benefit parents and the HCP experience. This led to recommendations on the design of the care pathway and parental communication to minimise the impact on families.
In 2015 following the UK pilot, 4 out of the 5 conditions were adopted by the National Screening Committee and all babies in England now benefit. Based on Moody’s findings an app has been developed (https://www.metabolicsupportuk.org/newborn-screening-app/) and made available parents to support them through the screening experience. The research was funded by Sheffield Hospitals Charity and disseminated internationally at the International Congress of Inborn Errors of Metabolism and International Conference on Applied Human Factors and Ergonomics.
- Author contribution statement
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- Non-English
- No
- English abstract
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