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dc.contributor.authorChudleigh, Jane
dc.contributor.authorBonham, Jim
dc.contributor.authorBryon, Mandy
dc.contributor.authorFrancis, Jill
dc.contributor.authorMoody, Louise
dc.contributor.authorMorris, Steve
dc.contributor.authorSimpson, Alan
dc.contributor.authorUlph, Fiona
dc.contributor.authorSouthern, Kevin
dc.date.accessioned2020-02-25T00:31:24Z
dc.date.available2020-02-25T00:31:24Z
dc.date.issued2019
dc.identifier.issn2055-5784
dc.identifier.urihttps://www.repository.cam.ac.uk/handle/1810/302721
dc.description.abstractBACKGROUND: Newborn blood spot (NBS) screening seeks to prevent ill health, disability and death through early diagnosis and effective intervention. Each year, around 10,000 parents of babies born in England are given a positive NBS result indicating their child may be affected or carriers of one of the nine conditions currently screened for. Despite guidance, these results are inconsistently delivered to parents across geographical regions. There is evidence that many parents are dissatisfied with how NBS results are communicated to them and that poor communication practices can lead to various negative sequelae. The purpose of this study is to co-design, implement and undertake a process evaluation of new, co-designed interventions to improve delivery of initial positive NBS results to parents. METHODS: This mixed-methods study will use four phases with defined outputs. Family Systems Theory will form the theoretical basis for the study. The principles and methods of experience-based co-design will underpin intervention development. Normalisation Process Theory will underpin the process evaluation of the interventions co-designed to improve the delivery of positive NBS results to parents. An economic analysis will determine resource use and costs of current practice and of implementing the new co-designed interventions. The nominal group technique will be used to inform the selection of suitable outcome measures for a future evaluation study. DISCUSSION: The main output of the proposed study will be co-designed interventions for initial communication of positive NBS results to parents ready to be evaluated in a definitive evaluation study.The interventions, co-designed with parents, will help to minimise potential negative sequelae associated with poor communication practices by considering parental and staff experiences as well as healthcare challenges such as finite resources. In addition, information about indicative costs associated with different communication strategies will be determined.It is anticipated it may also be possible to extrapolate principles of good communication practices from the present study for the delivery of bad news to parents for children newly diagnosed with other conditions including cancer and other chronic conditions such as diabetes or epilepsy. TRIAL REGISTRATION: ISRCTN 15330120 date of registration 17/01/2018.
dc.format.mediumElectronic-eCollection
dc.languageeng
dc.publisherSpringer Science and Business Media LLC
dc.rightsAttribution 4.0 International
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/
dc.titleRethinking 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.
dc.typeArticle
prism.publicationDate2019
prism.publicationNamePilot Feasibility Stud
prism.startingPage108
prism.volume5
dc.identifier.doi10.17863/CAM.49792
dcterms.dateAccepted2019-08-08
rioxxterms.versionofrecord10.1186/s40814-019-0487-5
rioxxterms.versionVoR
rioxxterms.licenseref.urihttp://www.rioxx.net/licenses/all-rights-reserved
rioxxterms.licenseref.startdate2019-01
dc.contributor.orcidChudleigh, Jane [0000-0002-7334-8708]
dc.identifier.eissn2055-5784
rioxxterms.typeJournal Article/Review
cam.issuedOnline2019-09-04


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Attribution 4.0 International
Except where otherwise noted, this item's licence is described as Attribution 4.0 International