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dc.contributor.authorChudleigh, Jane
dc.contributor.authorChinnery, Holly
dc.contributor.authorBonham, Jim R
dc.contributor.authorOlander, Ellinor
dc.contributor.authorMoody, Louise
dc.contributor.authorSimpson, Alan
dc.contributor.authorMorris, Stephen
dc.contributor.authorUlph, Fiona
dc.contributor.authorBryon, Mandy
dc.contributor.authorSouthern, Kevin
dc.date.accessioned2020-10-06T09:07:48Z
dc.date.available2020-10-06T09:07:48Z
dc.date.issued2020-10-01
dc.date.submitted2020-01-17
dc.identifier.otherbmjopen-2020-037081
dc.identifier.urihttps://www.repository.cam.ac.uk/handle/1810/311126
dc.description.abstractObjective: 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
dc.languageen
dc.publisherBMJ Publishing Group
dc.rightsEmbargo: ends 2020-10-01
dc.subjectCommunication
dc.subject1506
dc.subject1684
dc.subjectgenetics
dc.subjectpaediatrics
dc.subjectcystic fibrosis
dc.subjecthaematology
dc.subjectother metabolic
dc.subjecte.g. iron
dc.subjectporphyria
dc.titleQualitative exploration of health professionals’ experiences of communicating positive newborn bloodspot screening results for nine conditions in England
dc.typeArticle
dc.date.updated2020-10-06T09:07:48Z
prism.issueIdentifier10
prism.publicationNameBMJ Open
prism.volume10
dc.identifier.doi10.17863/CAM.58216
dcterms.dateAccepted2020-08-13
rioxxterms.versionofrecord10.1136/bmjopen-2020-037081
rioxxterms.versionVoR
rioxxterms.licenseref.urihttps://creativecommons.org/licenses/by/4.0/
rioxxterms.licenseref.startdate2020-10-01
dc.contributor.orcidChudleigh, Jane [0000-0002-7334-8708]
dc.contributor.orcidMorris, Stephen [0000-0002-5828-3563]
dc.identifier.eissn2044-6055
pubs.funder-project-idHealth Services and Delivery Research Programme (16/52/25)
rioxxterms.freetoread.startdate2020-10-01


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