Designing communication for Newborn Screening

Designing communication for Newborn Screening

Funder

  • NIHR HSDR
  • Sheffield Hospitals Charity
  • Sheffiled Children's NHS Foundation Trust

Project Team

Collaborators

Professor James Bonham, Dr Jane Chudleigh Dr Ellinor Olander, Dr Fiona Ulph, Dr Mandy Bryon, Professor Alan Simpson, Professor Jill Fancis, Professor Kevin Southern, Professor Stephen Morris.

Duration of Project

Since 2008

Project Overview

Newborn ‘heel-prick’ screening identifies babies who may have rare but serious conditions. In 2008/9 our research aimed to inform a proposed UK pilot of an expanded newborn screening service. The pilot sought to evaluate whether newborn screening should be expanded to include a further five conditions. The conditions are rare, complex and often unheard of by parents.

The research we undertook aimed to inform the pilot design and explore how parents felt about blood samples from their child being tested for additional 5 rare, and complex conditions when the screening practices for those conditions were new and untested. It also explored parental responses to proposed information provision, and their views on how they would wish to consent to participate.

During 2012-2013, expanded newborn screening for 5 additional inherited metabolic diseases was introduced in the UK as a national pilot. During that pilot we explored the parental experience of receiving positive screening results, as well as healthcare professional’s experiences of supporting parents and communicating the results. This led to recommendations related to the design of the care pathway and parental communication needs to improve the screening experience and minimise the impact on families.

Having established parents need for easy to access trusted and reliable sources of information through our research, we have been closely involved in the development and testing of an app to provide parents information and support during the challenging time of receiving a positive screening result. The app development led by Professor Jim Bonham (Sheffield Children’s Hospital) and in collaboration with Metabolic Support UK (a leading patient organisation for Inherited Metabolic Disorders) is an interactive resource, providing consistent information for new parents of the six Inherited Metabolic Disorders now tested via the heel prick test. It aims to reduce anxiety, and help families at the time of a positive screening result directing them to key information, help and support. Family stories, and visual infographics are provided alongside advice from specialists.

Since 2017, we have also been involved in the ReSPoND project. In collaboration with a wider team led by Dr Jane Chudleigh (City, University of London) this research funded by NIHR HS&DR involves the co-design of new approaches to communicating newborn screening results and interventions to minimise the impact on parental emotional well-being and stress.

List of Outputs

Chudleigh, J. Bonham, J. Bryon, M., Francis, J. Moody, L., Morris, S.; Alan Simpson, A. Southern, K, Ulph, F. (2019) Rethinking Strategies for Positive Newborn Screening Result (NBS+) Delivery (ReSPoND): a process evaluation of co-designing interventions to minimise impact on parental emotional well-being and stress. Pilot and Feasibility Studies 5:108

Moody L. Atkinson, L. Kehal, I. Bonham, J. H (2017) 'Healthcare Professionals' and Parents Experiences of the Confirmatory Testing Period: A qualitative study of the UK Expanded Newborn Screening Pilot' BMC Pediatrics

Moody, L. Choudhry, K. (2011) Views on the Provision of Informed Consent for Expanded Newborn Screening. Health Expectations 16 (30): 239–250. doi: 10.1111/j.1369-7625.2011.00710.x

Conference Dissemination

Bonham, J. Moody, L. Atkinson, L.  Kehal I.  (2017) Informing parents about a suspected IMD diagnosis following screening: key lessons. International Congress of Inborn Errors of Metabolism, taking place September 5-8, 2017, in Rio de Janeiro, Brazil.

Moody, L. (2016) Experiences of the newborn screening confirmatory testing period. 7th International Conference on Applied Human Factors and Ergonomics (AHFE 2016) a Walt Disney World® Swan and Dolphin Hotel, Orlando, Florida, USA July 27-31, 2016.

Moody, L, Pottinger, E. Choudhry K. Wallace, L. (2010) UK Parental Views on the Provision of Informed Consent for Expanded Newborn Screening Research.  11th International Congress of Behavioural Medicine 4-7 August 2010 Grand Hyatt Washington in Washington, DC, USA.

Related Links

Further details on the ‘Rethinking Strategies for Positive Newborn Screening Result Delivery (ReSPoND): a process evaluation of co-designing interventions to minimise impact on parental emotional well-being and stress’ project led by Dr Jane Chudleigh, City, University of London

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