‘We don't know what tomorrow will bring’: Parents' experiences of caring for a child with an undiagnosed genetic condition-Reference-Cited by-同舟云学术

‘We don't know what tomorrow will bring’: Parents' experiences of caring for a child with an undiagnosed genetic condition

Published:2021-03-22 Issue:5 Volume:47 Page:588-596
ISSN:0305-1862
Container-title:Child: Care, Health and Development
language:en
Short-container-title:Child

Author:

Aldiss Susie¹^ORCID,Gibson Faith¹²^ORCID,Geoghegan Sophie²,Jewitt Anna³,Elliott Tara Kerr²,Williams Anna²,Wray Jo²,Oulton Kate²

Affiliation:

1. School of Health Sciences University of Surrey Guildford UK

2. Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID) Great Ormond Street Hospital for Children NHS Foundation Trust London UK

3. Clinical Genetics Team Great Ormond Street Hospital for Children NHS Foundation Trust London UK

Funder

NIHR Great Ormond Street Hospital Biomedical Research Centre

Publisher

Wiley

Subject

Public Health, Environmental and Occupational Health,Developmental and Educational Psychology,Pediatrics, Perinatology and Child Health

Link

https://onlinelibrary.wiley.com/doi/pdf/10.1111/cch.12866

Reference25 articles.

1. All Party Parliamentary Group on Rare Genetic and Undiagnosed Conditions. (2016).Undiagnosed genetic conditions and the impact of genome sequencing. Retrieved fromhttp://rdstaging.geneticalliance.uk/media/1860/final-swan-graduate-report.pdf

2. All Party Parliamentary Group on Rare Genetic and Undiagnosed Conditions. (2017).Leaving no one behind: Why England needs an implementation plan for the UK strategy for rare diseases. Retrieved fromhttps://www.raredisease.org.uk/wp-content/uploads/sites/7/2018/04/appg-report-on-the-implementation-of-the-uk-strategy-for-rare-diseases-in-england.pdf

3. “Before Facebook and before social media…we did not know anybody else that had this”: parent perspectives on internet and social media use during the pediatric clinical genetic testing process

4. Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare System

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