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Psychophysiological Assessment of the Effectiveness of Emotion Regulation Strategies in Childhood
Published on: February 11, 2017
Rethinking Strategies for Positive Newborn Screening Result (NBS+) Delivery (ReSPoND): a process evaluation of
Jane Chudleigh1, Jim Bonham2, Mandy Bryon3
11Centre for Maternal and Child Health Research, City, University of London, London, EC1V 0HB UK.
Insights
Co-designed interventions will improve how healthcare professionals deliver positive newborn blood spot (NBS) screening results to parents, addressing inconsistencies and parental dissatisfaction. This aims to minimize negative impacts for families receiving critical health information.
Area of Science:
- Public Health
- Healthcare Communication
- Patient Experience
Background:
- Newborn blood spot (NBS) screening identifies serious health conditions in infants.
- Inconsistent delivery of positive NBS results causes parental dissatisfaction and negative outcomes.
- Current communication practices require improvement to support families effectively.
Purpose of the Study:
- To co-design, implement, and evaluate interventions for delivering initial positive NBS results to parents.
- To improve the consistency and quality of communication regarding NBS results.
- To minimize adverse effects associated with current communication methods.
Main Methods:
- Mixed-methods study employing Family Systems Theory and experience-based co-design.
- Process evaluation using Normalisation Process Theory.
- Economic analysis of current and new intervention costs; nominal group technique for outcome measure selection.
Main Results:
- Co-designed interventions for initial positive NBS result communication will be developed.
- Interventions will consider parental and staff experiences and healthcare resource constraints.
- Indicative costs of different communication strategies will be determined.
Conclusions:
- Co-designed interventions will be ready for evaluation in a definitive study.
- Improved communication practices aim to reduce negative sequelae for parents.
- Findings may inform communication strategies for delivering bad news in other pediatric conditions.
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.
Trial Registration:
ISRCTN 15330120 date of registration 17/01/2018.
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