Qualitative exploration of health professionals’ experiences of communicating positive newborn bloodspot screening results for nine conditions in England
Authors
Chinnery, Holly
Bonham, Jim R
Olander, Ellinor
Moody, Louise
Simpson, Alan
Ulph, Fiona
Bryon, Mandy
Southern, Kevin
Publication Date
2020-10-01Journal Title
BMJ Open
Publisher
BMJ Publishing Group
Volume
10
Issue
10
Language
en
Type
Article
This Version
VoR
Metadata
Show full item recordCitation
Chudleigh, J., Chinnery, H., Bonham, J. R., Olander, E., Moody, L., Simpson, A., Morris, S., et al. (2020). Qualitative exploration of health professionals’ experiences of communicating positive newborn bloodspot screening results for nine conditions in England. BMJ Open, 10 (10)https://doi.org/10.1136/bmjopen-2020-037081
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. Trial registration number: ISRCTN15330120
Keywords
Communication, 1506, 1684, genetics, paediatrics, cystic fibrosis, haematology, other metabolic, e.g. iron, porphyria
Sponsorship
Health Services and Delivery Research Programme (16/52/25)
Identifiers
bmjopen-2020-037081
External DOI: https://doi.org/10.1136/bmjopen-2020-037081
This record's URL: https://www.repository.cam.ac.uk/handle/1810/311126
Rights
Embargo: ends 2020-10-01
Licence:
https://creativecommons.org/licenses/by/4.0/