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. 2020 Oct 1;10(10):e037081.
doi: 10.1136/bmjopen-2020-037081.

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

Jane Chudleigh  1 , Holly Chinnery  2 , Jim R Bonham  3 , Ellinor Olander  4 , Louise Moody  5 , Alan Simpson  6 , Stephen Morris  7 , Fiona Ulph  8 , Mandy Bryon  9 , Kevin Southern  10
Affiliations

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

Jane Chudleigh et al. BMJ Open. .

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

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Conflict of interest statement

Competing interests: None declared.

References

    1. UK Newborn Screening Programme Centre Health professional Handbook: a guide to newborn blood spot screening for healthcare professionals. London: UK Newborn Screening Programme Centre, 2012: 1–56.
    1. Bush A. Editorial overview: newborn screening for cystic fibrosis--benefit or bane? Paediatr Respir Rev 2008;9:301–2. 10.1016/j.prrv.2008.09.002 - DOI - PubMed
    1. Public Health England Newborn blood spot screening programme in the UK: data collection and performance analysis report 2016 to 2017. London, 2018: 1–65.
    1. Public Health England Nhs sickle cell and thalassaemia screening programme data report 2015/16: trends and performance analysis. London, 2017: 1–81.
    1. Public Health England Newborn blood spot screening: programme Handbook: public health England, 2018.

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