Values of Individuals With Rare Genetic Neurodevelopmental Disorders and Their Family/Caregivers in Healthcare: A Scoping Review to Inform Guideline Development

20260 citationsJournal Articlehybrid Open Access

Authors

Mirthe J. Klein Haneveld · Emma Kinderziekenhuis

Louise Cox · Emma Kinderziekenhuis

Petri J. C. M. Embregts · Tilburg University

Alistair Niemeijer · University of Humanistic Studies

Martina C Cornel · Amsterdam Neuroscience

Charlotte M W Gaasterland · Leiden University Medical Center

Agnies M van Eeghen

Abstract

Guideline developers should address issues that matter to individuals with RGNDs and their families/caregivers during Evidence-to-Decision processes, such as family-level impact and identity-related considerations. Further research is needed to capture perspectives of individuals with ID, which are underrepresented compared to family/caregivers.

Topics & Keywords

Genomics and Rare Diseases Family and Disability Support Research Down syndrome and intellectual disability research

UN Sustainable Development Goals

Peace, Justice and strong institutions

Publication Details

Published in: Journal of Intellectual Disability Research

DOI: 10.1111/jir.70097

Field-Weighted Citation Impact: 0.00