Co-designing Improved Communication of Newborn Bloodspot Screening Results to Parents: Mixed Methods Study
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Le résumé fourni par la source
BACKGROUND: Each year in England, almost 10,000 parents are informed of their child's positive newborn bloodspot screening (NBS) results. This occurs approximately 2 to 8 weeks after birth depending on the condition. Communication of positive NBS results is a subtle and skillful task, demanding thought, preparation, and evidence to minimize potentially harmful negative sequelae. Evidence of variability in the content and the way the result is currently communicated has the potential to lead to increased parental anxiety and distress. OBJECTIVE: This study focused on the development of co-designed interventions to improve the experiences of parents receiving positive NBS results for their children and enhance communication between health care professionals and parents. METHODS: An experience-based co-design approach was used to explore experiences and co-design solutions with 17 health professionals employed in 3 National Health Service Trusts in England and 21 parents (13/21, 62% mothers and 8/21, 38% fathers) of 14 children recruited from the same 3 National Health Service Trusts. Experiences with existing services were gathered via semistructured interviews with health professionals. Filmed narrative interviews with parents were developed into a composite film. The co-design process identified priorities for improving communication of positive NBS results through separate parent and health professional feedback events followed by joint feedback events. In total, 4 interventions were then co-designed between the participants through a web-based platform. RESULTS: Parents and health professionals provided positive feedback regarding the process of gathering experiences and identifying priorities. Themes identified from the parent interviews included impact of initial communication, parental reactions, attending the first clinic appointment, impact of health professionals' communication strategies and skills, impact of diagnosis on family and friends, improvements to the communication of positive NBS results, and parents' views on NBS. Themes identified from the health professional interviews included communication between health professionals, process of communicating with the family, parent- and family-centered care, and availability of resources and challenges to effective communication. In response to these themes, 4 interventions were co-designed: changes to the NBS card; standardized laboratory proformas; standardized communication checklists; and an email or letter for providing reliable, up-to-date, condition-specific information for parents following the communication of positive NBS results. CONCLUSIONS: Parents and health professionals were able to successfully work together to identify priorities and develop co-designed interventions to improve communication of positive NBS results to parents. The resulting co-designed interventions address communication at different stages of the communication pathway to improve the experiences of parents receiving positive NBS results for their children. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1186/s40814-019-0487-5.
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Le contrôle bibliographique ouvert
DOI retrouvé dans Crossref DOI retrouvé ; titre concordant.
- Titre Crossref
- Co-designing Improved Communication of Newborn Bloodspot Screening Results to Parents: Mixed Methods Study
- Date Crossref
- 27/07/2022
- Éditeur
- JMIR Publications Inc.
- Type
- journal-article
Ce recoupement confirme des métadonnées liées au DOI. Il ne confirme ni la méthode ni les conclusions de l’étude, et il ne compte pas comme une seconde source scientifique indépendante.
Où se fait cette recherche
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King's College London Cicely Saunders Institute pays non établi dans la noticeUniversité ou école supérieure
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Cicely Saunders International pays non établi dans la noticeOrganisation à but non lucratif
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Sheffield Children's NHS Foundation Trust Diagnostics and Genetics pays non établi dans la noticeÉtablissement de santé
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St Mary's University Twickenham London pays non établi dans la noticeUniversité ou école supérieure
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Guy's and St Thomas' NHS Foundation Trust pays non établi dans la noticeÉtablissement de santé
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Evelina London Children's Healthcare pays non établi dans la noticeÉtablissement de santé
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Birmingham Women’s and Children’s NHS Foundation Trust pays non établi dans la noticeÉtablissement de santé
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University of Liverpool Department of Women's & Children's Health pays non établi dans la noticeUniversité ou école supérieure
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University of London City pays non établi dans la noticeUniversité ou école supérieure
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University of Cambridge Department of Public Health and Primary Care pays non établi dans la noticeUniversité ou école supérieure
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Coventry University Memory and Communities pays non établi dans la noticeUniversité ou école supérieure
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Faculty of Sports pays non établi dans la noticeUniversité ou école supérieure
Cicely Saunders Institute — King's College London, Cicely Saunders International et Diagnostics and Genetics — Sheffield Children's NHS Foundation Trust, avec 9 autres affiliations.
Une affiliation ne permet pas de déduire la nationalité d’un auteur.