Rethinking Strategies for Positive Newborn Screening Result (NBS+) Delivery (ReSPoND): a process evaluation of codesigning interventions to minimise impact on parental emotional well-being and stress

Jane Chudleigh, Jim Bonham, Mandy Byron, Jill Francis, Louise Moody, Steve Morris, Alan Simpson, Fiona Ulph, Kevin Southern

Research output: Contribution to journalArticle

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Abstract

Background: 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.
Original languageEnglish
Article number108 (2019)
Number of pages11
JournalPilot and Feasibility Studies
Volume5
Issue number108
DOIs
Publication statusPublished - 4 Sep 2019

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Parents
Newborn Infant
Communication
Costs and Cost Analysis
Systems Theory
England
Early Diagnosis
Epilepsy
Theoretical Models
Economics
Outcome Assessment (Health Care)
Delivery of Health Care
Health
Neoplasms

Bibliographical note

This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Keywords

  • Newborn bloodspot screening
  • Cystic fibrosis
  • Sickle cell disease
  • Metabolic
  • Congenital hypothyroid

Cite this

Rethinking Strategies for Positive Newborn Screening Result (NBS+) Delivery (ReSPoND) : a process evaluation of codesigning interventions to minimise impact on parental emotional well-being and stress. / Chudleigh, Jane; Bonham, Jim; Byron, Mandy; Francis, Jill; Moody, Louise; Morris, Steve; Simpson, Alan; Ulph, Fiona; Southern, Kevin.

In: Pilot and Feasibility Studies, Vol. 5, No. 108, 108 (2019), 04.09.2019.

Research output: Contribution to journalArticle

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AU - Francis, Jill

AU - Moody, Louise

AU - Morris, Steve

AU - Simpson, Alan

AU - Ulph, Fiona

AU - Southern, Kevin

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N2 - Background: 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 nominalgroup 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.

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KW - Newborn bloodspot screening

KW - Cystic fibrosis

KW - Sickle cell disease

KW - Metabolic

KW - Congenital hypothyroid

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JO - Pilot and Feasibility Studies

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