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.
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 language | English |
|---|---|
| Article number | e037081 |
| Number of pages | 9 |
| Journal | BMJ Open |
| Volume | 10 |
| DOIs | |
| Publication status | Published - 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)