Qualitative exploration of health professionals’ experiences of communicating positive newborn bloodspot screening results for nine conditions in England

Jane Chudleigh, Holly Chinnery, James Bonham, Ellinor Orlanda, Louise Moody, Alan Simpson, Stephen Morris, Fiona Ulph, Mandy Byron, Kevin Southern

    Research output: Contribution to journalArticlepeer-review

    5 Citations (Scopus)
    5 Downloads (Pure)

    Abstract

    Objective To explore health professionals’ experiences of
    communicating positive newborn bloodspot screening (NBS)
    results, highlight differences, share good practice and make
    recommendations for future research.
    Design Qualitative exploratory design was employed using
    semi-structured interviews
    Setting Three National Health Service provider organisations
    in England
    Participants Seventeen health professionals involved in
    communicating positive newborn bloodspot screening results
    to parents for all nine conditions currently included in the
    newborn bloodspot screening programme in England.
    Results Findings indicated variation in approaches to
    communicating positive newborn bloodspot screening results
    to parents, largely influenced by resources available and the
    lack of clear guidance. Health professionals emphasised the
    importance of communicating results to families in a way that
    is sensitive to their needs. However, many challenges hindered
    communication including logistical considerations; difficulty
    contacting the family and other health professionals; language
    barriers; parental reactions; resource considerations; lack of
    training; and insufficient time.
    Conclusion Health professionals invest a lot of time and
    energy trying to ensure communication of positive newborn
    bloodspot screening results to families is done well. However,
    there continues to be great variation in the way these results
    are communicated to parents and this is largely influenced
    by resources available but also the lack of concrete guidance.
    How best to support health professionals undertaking this
    challenging and emotive task requires further exploration.
    We recommend evaluation of a more cohesive approach that
    meets the needs of parents and staff while being sensitive to
    the subtleties of each condition.
    Original languageEnglish
    Article numbere037081
    Number of pages9
    JournalBMJ Open
    Volume10
    DOIs
    Publication statusPublished - 1 Oct 2020

    Bibliographical note

    © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/
    This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made.
    See: https://creativecommons.org/licenses/by/4.0/

    Keywords

    • cystic fibrosis
    • e.g. iron
    • genetics
    • haematology
    • other metabolic
    • paediatrics
    • porphyria

    ASJC Scopus subject areas

    • Medicine(all)

    Fingerprint

    Dive into the research topics of 'Qualitative exploration of health professionals’ experiences of communicating positive newborn bloodspot screening results for nine conditions in England'. Together they form a unique fingerprint.

    Cite this