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Co-designing improved communication to parents of newborn bloodspot screening results

Chudleigh, J. H. ORCID: 0000-0002-7334-8708, Shakespeare, L., Holder, P. , Chinnery, H., Hack, G., Gill, T., Gould, R., Southern, K. W., Olander, E. K. ORCID: 0000-0001-7792-9895, Morris, S., Bonham, J. R., Simpson, A. ORCID: 0000-0003-3286-9846 & Moody, L. (2022). Co-designing improved communication to parents of newborn bloodspot screening results. Journal of Participatory Medicine, doi: 10.2196/33485


Background: Each year in England, almost 10,000 parents are informed of their child’s positive newborn bloodspot screening result around 2-8 weeks after birth, depending on the condition. Communication of positive newborn bloodspot screening results is a subtle and skilful task, which demands thought, preparation and evidence to minimise potentially harmful negative sequelae. Evidence exists of variability in the content and the way the result is currently communicated which has the potential to lead to increased parental anxiety and distress.

Objective: The main objective was to co-design interventions to improve delivery of positive newborn bloodspot screening results to families.

Methods: The principles of Experience-based Co-design were used with seventeen health care professionals employed in three National Health Service Trusts in England and 21 parents; 13 mothers and 8 fathers of 14 children recruited from the same three National Health Service Trusts. Staff experiences were gathered via semi-structured interviews. Filmed, narrative interviews with parents were developed into a composite film. These data were used to identify priorities for improving communication of positive newborn bloodspot screening results to parents during firstly, separate parent and heath care professionals feedback events followed by joint parent and heath care professionals feedback events. Following this, parents and heath care professionals worked together via online co-design working groups to develop co-designed solutions and additions to existing processes.

Results: Themes identified from the parent’s interviews included: impact of initial communication; parental reactions; attending the first clinic appointment; impact of staff communication strategies and skills; impact of diagnosis on family and friends; improvements to the communication of positive NBS results; and parents views of NBS. Themes identified from the staff interviews included: communication between health care professionals; process of communicating with the family; parent and family- centred care; availability of resources and challenges to effective communication. Three online co-design working groups were developed, each attended by 12-18 participants who had taken part in the parental or health care professionals’ interviews. The priorities included: changes to the NBS card; standardised laboratory proformas; standardised communication checklists; and an email / letter for providing reliable up to date condition specific information for parents following communication of the positive NBS result.

Conclusions: Variation in communication practices for positive NBS results continues to exist. This was influenced by many factors and has the potential to lead to negative sequelae from a parental perspective. Parents and health care professionals were able to successfully work together to identify priorities and develop potential solutions to improve communication of positive NBS results to parents. The adaptation of EBCD to include virtual methods could reduce costs associated with this methodology while also enabling the approach to be more responsive to health care professionals’ and patients’/parents’ busy schedules.

Clinical Trial: ISRCTN 15330120

Publication Type: Article
Additional Information: © The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.
Subjects: R Medicine > RC Internal medicine
R Medicine > RJ Pediatrics
R Medicine > RT Nursing
Departments: School of Health & Psychological Sciences > Midwifery & Radiography
School of Health & Psychological Sciences > Nursing
Text - Accepted Version
Available under License Creative Commons: Attribution International Public License 4.0.

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