Jane Chudleigh
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View article: Exploring How Children and Young People With Sickle Cell Disease and Their Families Want to be Involved in Research: A Qualitative Study
Exploring How Children and Young People With Sickle Cell Disease and Their Families Want to be Involved in Research: A Qualitative Study Open
Background There is growing emphasis on the importance of Patient and Public Involvement and Engagement in research to ensure it addresses the needs of the target population. Disparities exist in terms of underserved and underrepresented g…
View article: Development of an Online Scenario-Based Tool to Enable Research Participation and Public Engagement in Cystic Fibrosis Newborn Screening: Mixed Methods Study
Development of an Online Scenario-Based Tool to Enable Research Participation and Public Engagement in Cystic Fibrosis Newborn Screening: Mixed Methods Study Open
Background Newborn screening aims to identify babies affected by rare but serious genetic conditions. As technology advances, there is the potential to expand the newborn screening program following evaluation of the likely benefits and dr…
View article: Barriers and facilitators influencing referral and access to palliative care for children and young people with life-limiting and life-threatening conditions: a scoping review of the evidence
Barriers and facilitators influencing referral and access to palliative care for children and young people with life-limiting and life-threatening conditions: a scoping review of the evidence Open
Background: Palliative care is an essential component of children’s health services but is accessed by fewer children than could potentially benefit. Aim: Appraise the evidence to identify factors influencing referral and access to childre…
View article: Parents' and childrens’ views of wider genomic testing when used as part of newborn screening to identify cystic fibrosis
Parents' and childrens’ views of wider genomic testing when used as part of newborn screening to identify cystic fibrosis Open
Newborn bloodspot screening (NBS) is currently undergoing a ‘revolution’ (Spiekerkoetter et al., 2023). The development of new therapies (Vockley et al., 2023) and the piloting of whole genome sequencing in healthy newborns (e.g. Newborn G…
View article: Psychosocial Impact of False-Positive Newborn Screening Results: A Scoping Review
Psychosocial Impact of False-Positive Newborn Screening Results: A Scoping Review Open
Psychosocial consequences of false-positive results following newborn bloodspot screening have been identified as a potential risk to this highly successful public health initiative. A scoping review was undertaken in October 2023 underpin…
View article: Development of an Online Scenario-Based Tool to Enable Research Participation and Public Engagement in Cystic Fibrosis Newborn Screening: Mixed Methods Study (Preprint)
Development of an Online Scenario-Based Tool to Enable Research Participation and Public Engagement in Cystic Fibrosis Newborn Screening: Mixed Methods Study (Preprint) Open
BACKGROUND Newborn screening aims to identify babies affected by rare but serious genetic conditions. As technology advances, there is the potential to expand the newborn screening program following evaluation of the likely benefits and d…
View article: International Perspectives of Extended Genetic Sequencing When Used as Part of Newborn Screening to Identify Cystic Fibrosis
International Perspectives of Extended Genetic Sequencing When Used as Part of Newborn Screening to Identify Cystic Fibrosis Open
There is increasing interest in using extended genetic sequencing (EGS) in newborn screening (NBS) for cystic fibrosis (CF). How this is implemented will change the number of children being given an uncertain outcome of CRMS/CFSPID (cystic…
View article: Stakeholder Views of the Proposed Introduction of Next Generation Sequencing into the Cystic Fibrosis Screening Protocol in England
Stakeholder Views of the Proposed Introduction of Next Generation Sequencing into the Cystic Fibrosis Screening Protocol in England Open
The project aimed to gather, analyse, and compare the views of stakeholders about the proposed UK cystic fibrosis (CF) screening protocol incorporating next generation sequencing (NGS). The study design was based on principles of Q-methodo…
View article: Paediatric eye and vision research participation experiences: a systematic review
Paediatric eye and vision research participation experiences: a systematic review Open
Background For children and young people with eye and vision conditions, research is essential to advancing evidence-based recommendations in diagnosis, prevention, treatments and cures. Patient ‘experience’ reflects a key measure of quali…
View article: Patient experience of imaging reports: A systematic literature review
Patient experience of imaging reports: A systematic literature review Open
Introduction: Written reports are often the sole form of communication from diagnostic imaging. Reports are increasingly being accessed by patients through electronic records. Experiencing medical terminology can be confusing and lead to m…
View article: Co-designed strategies for delivery of positive newborn bloodspot screening results to parents: the ReSPoND mixed-methods study
Co-designed strategies for delivery of positive newborn bloodspot screening results to parents: the ReSPoND mixed-methods study Open
Background Newborn bloodspot screening identifies presymptomatic babies who are affected by genetic or congenital conditions. Each year, around 10,000 parents of babies born in England are given a positive newborn bloodspot screening resul…
View article: Co-designing Improved Communication of Newborn Bloodspot Screening Results to Parents: Mixed Methods Study
Co-designing Improved Communication of Newborn Bloodspot Screening Results to Parents: Mixed Methods Study Open
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 positi…
View article: Delivering Positive Newborn Screening Results: Cost Analysis of Existing Practice versus Innovative, Co-Designed Strategies from the ReSPoND Study
Delivering Positive Newborn Screening Results: Cost Analysis of Existing Practice versus Innovative, Co-Designed Strategies from the ReSPoND Study Open
Although the communication pathways of Newborn Bloodspot Screening (NBS) are a delicate task, these pathways vary across different conditions and are often not evidence-based. The ReSPoND interventions were co-designed by healthcare profes…
View article: Paediatric Eye and Vision Research Participation Experiences: A Systematic Review
Paediatric Eye and Vision Research Participation Experiences: A Systematic Review Open
Background :For children and young people with eye and vision conditions, research is essential to advancing evidence-based recommendations in diagnosis, prevention, treatments and cures. Patient ‘experience’ reflects a key measure of qual…
View article: International Approaches to Management of CFTR-Related Metabolic Syndrome/Cystic Fibrosis Screen Positive, Inconclusive Diagnosis
International Approaches to Management of CFTR-Related Metabolic Syndrome/Cystic Fibrosis Screen Positive, Inconclusive Diagnosis Open
The main aim of the present study was to explore health professionals’ reported experiences and approaches to managing children who receive a designation of cystic fibrosis transmembrane conductance regulator-related metabolic syndrome/cys…
View article: International Approaches to Management of CFTR-Related Metabolic Syndrome / Cystic Fibrosis Screen Positive, Inconclusive Diagnosis
International Approaches to Management of CFTR-Related Metabolic Syndrome / Cystic Fibrosis Screen Positive, Inconclusive Diagnosis Open
The main aim of the present study was to explore health professionals’ reported experiences and approaches to managing children who receive a designation of cystic fibrosis transmembrane conductance regulator-related metabolic syndro…
View article: Processing of Positive Newborn Screening Results for Congenital Hypothyroidism: A Qualitative Exploration of Current Practice in England
Processing of Positive Newborn Screening Results for Congenital Hypothyroidism: A Qualitative Exploration of Current Practice in England Open
The objective of this research was to explore current communication practices for positive newborn bloodspot screening results for congenital hypothyroidism from the newborn bloodspot screening laboratory to clinicians and then families, i…
View article: Co-designing interventions for communicating positive newborn bloodspot screening results: use of online Experience-based Co-design (Preprint)
Co-designing interventions for communicating positive newborn bloodspot screening results: use of online Experience-based Co-design (Preprint) Open
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 screeni…
View article: Process evaluation of co-designed interventions to improve communication of positive newborn bloodspot screening results
Process evaluation of co-designed interventions to improve communication of positive newborn bloodspot screening results Open
Objective To implement and evaluate co-designed interventions to improve communication of positive newborn bloodspot screening results and make recommendations for future research and practice. Design A process evaluation underpinned by No…
View article: Process evaluation of co-designed interventions to improve communication of positive newborn bloodspot screening results
Process evaluation of co-designed interventions to improve communication of positive newborn bloodspot screening results Open
Objective To implement and evaluate co-designed interventions to improve communication of positive newborn bloodspot screening results and make recommendations for future research and practice. Design A process evaluation underpinned by No…
View article: The problem with ‘My Five Moments for Hand Hygiene’
The problem with ‘My Five Moments for Hand Hygiene’ Open
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View article: How practice nurses engage with parents during their consultations about the MMR vaccine: a qualitative study
How practice nurses engage with parents during their consultations about the MMR vaccine: a qualitative study Open
Aim: We aimed to understand practice nurses’ perceptions about how they engage with parents during consultations concerning the measles, mumps and rubella (MMR) vaccine. Background: The incidence of measles is increasing globally. Immunisa…
View article: Processing of positive newborn screening results: a qualitative exploration of current practice in England
Processing of positive newborn screening results: a qualitative exploration of current practice in England Open
Objective To explore current communication practices for positive newborn screening results from the newborn bloodspot screening (NBS) laboratory to clinicians to highlight differences, understand how the pathways are implemented in practi…
View article: Qualitative exploration of health professionals’ experiences of communicating positive newborn bloodspot screening results for nine conditions in England
Qualitative exploration of health professionals’ experiences of communicating positive newborn bloodspot screening results for nine conditions in England Open
Objective To explore health professionals’ experiences of communicating positive newborn bloodspot screening (NBS) results, highlight differences, share good practice and make recommendations for future research. Design Qualitative explora…
View article: Psychological Impact of NBS for CF
Psychological Impact of NBS for CF Open
Newborn screening for cystic fibrosis has resulted in diagnosis often before symptoms are recognised, leading to benefits including reduced disease severity, decreased burden of care, and lower costs. The psychological impact of this often…