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  4. Rethinking Strategies for Positive Newborn Screening Result




Rethinking Strategies for Positive Newborn Screening Result



Staff, Students, Alumni

Speaker: Dr Jane Chudleigh, Lecturer in Children's Nursing

The Centre for Maternal and Child Health at the School of Health Science, City, University of London welcomes Dr Jane Chudleigh to discuss their study on Communication of Positive Newborn Bloodspot Screening Results (ReSPoND) as part of the research seminar series.


Each year about 800,000 babies in the UK have a blood test taken (called newborn bloodspot screening (NBS)) to screen for specific conditions, which if treated early will improve the child’s health and well-being. In 2015-16, over 10,000 babies were identified as being affected or healthy carriers of a gene for one of the conditions screened for, which include sickle cell disease, cystic fibrosis, metabolic conditions and hypothyroidism. When a positive result occurs, a variety of ways are used to deliver the result but many parents complain about the approaches used.

Our Aim: For parents and health professionals to work together to design interventions to facilitate effective communication of positive NBS results to parents by health professionals.

The research takes place in four phases:

Phase 0: Gaining the necessary approvals to do the work

Phase 1: We will find out how NBS results are communicated from laboratories to parents in all parts of England for the screened conditions.

Phase 2: Parents and health professionals will work together to design the best way(s) to communicate positive NBS results. We will watch how NBS results are delivered to parents and then ask parents and health professionals about their experiences in two study sites. We will ask parents and health professionals to work together through a series of workshops to design approaches (interventions) for the effective and sensitive communication of positive NBS results.

Phase 3: We will start using the new approaches designed in Phase 2 in two study sites and compare them to usual practice observed in Phase 2 in terms of usability and cost.

Phase 4: Future Directions: Information from the first three phases will be reviewed and plans made for a future study to evaluate the chosen approach.

About the speaker

After qualifying as a children's nurse, Jane started her clinical career in the neonatal intensive care unit and went on to study for her MSc in research methods and PhD in infection control in neonatal intensive care. She has continued her research interest in the field of infection control and is co-author of an international Cochrane review that evaluates interventions to improve hand hygiene compliance and reduce infection in patient care.

Later in her career, Jane undertook a post-doctoral fellowship at Great Ormond Street Hospital / UCL, Institute of Child Health exploring lung structure and function in infants diagnosed with Cystic Fibrosis following newborn screening and continues to have a good relationship with the London Cystic Fibrosis Collaboration. It was this experience that helped develop Jane’s other research interest which focuses on communication with parents following screening and has led to Jane being a Principal Investigator and being invited to speak at events both nationally and internationally as well as being invited to join various national working groups. Jane is also currently the lead for the London Research in Child Health (RiCH) group.

Jane was awarded funding from NIHR HS&DR to undertake the ReSPoND study in 2017.

A light lunch with refreshments will be provided. Further information and event timings can be found on our website.

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When and where

12.45pm - 2.00pmMonday 5th November 2018

MG26 Myddelton Street Building City, University of London 1 Myddelton Street London EC1R 1UW United Kingdom