How Knowledge Mapping Can Bridge the Communication Gap Between Caregivers and Health Professionals Supporting Individuals With Complex Medical Needs: A Study in Fragile X Syndrome

The challenges of caring for children with complex health needs, such as intellectual disability (ID) and autism spectrum disorder (ASD), are multiple and experienced by both caregivers and health professionals. Fragile X syndrome (FXS) is the most common single gene cause of ID and ASD, and provide...

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Autores principales:	Karen Kelm, Francois V. Bolduc
Formato:	article
Lenguaje:	EN
Publicado:	Frontiers Media S.A. 2021
Materias:	Fragile X syndrome care mapping communication mental model medical complexity knowledge mapping Psychiatry RC435-571
Acceso en línea:	https://doaj.org/article/08018c0ba8d44697ac36bb5426024808
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spelling	oai:doaj.org-article:08018c0ba8d44697ac36bb54260248082021-11-30T17:29:23ZHow Knowledge Mapping Can Bridge the Communication Gap Between Caregivers and Health Professionals Supporting Individuals With Complex Medical Needs: A Study in Fragile X Syndrome1664-064010.3389/fpsyt.2021.731011https://doaj.org/article/08018c0ba8d44697ac36bb54260248082021-11-01T00:00:00Zhttps://www.frontiersin.org/articles/10.3389/fpsyt.2021.731011/fullhttps://doaj.org/toc/1664-0640The challenges of caring for children with complex health needs, such as intellectual disability (ID) and autism spectrum disorder (ASD), are multiple and experienced by both caregivers and health professionals. Fragile X syndrome (FXS) is the most common single gene cause of ID and ASD, and provides a pertinent model to understand these complexities of care, as well as the communication challenges experienced between caregivers and healthcare professionals. In recent years both caregivers and healthcare professionals have recognized the need for enhancing communication both in clinical and research settings. Knowledge mapping has emerged as a tool to support quality communication between team participants. Here we review how differences in mental models, as well as challenges related to health literacy and knowledge transfer can have an impact on communication. Next, we present different knowledge mapping approaches used in complex situations, with a focus on concept maps and care maps. Finally, we highlight the potential benefits and limitations of mapping to improve communication issues related to caring for individuals with FXS and potentially other neurodevelopmental disorders (NDDs).Karen KelmFrancois V. BolducFrancois V. BolducFrancois V. BolducFrancois V. BolducFrontiers Media S.A.articleFragile X syndromecare mappingcommunicationmental modelmedical complexityknowledge mappingPsychiatryRC435-571ENFrontiers in Psychiatry, Vol 12 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Fragile X syndrome care mapping communication mental model medical complexity knowledge mapping Psychiatry RC435-571
spellingShingle	Fragile X syndrome care mapping communication mental model medical complexity knowledge mapping Psychiatry RC435-571 Karen Kelm Francois V. Bolduc Francois V. Bolduc Francois V. Bolduc Francois V. Bolduc How Knowledge Mapping Can Bridge the Communication Gap Between Caregivers and Health Professionals Supporting Individuals With Complex Medical Needs: A Study in Fragile X Syndrome
description	The challenges of caring for children with complex health needs, such as intellectual disability (ID) and autism spectrum disorder (ASD), are multiple and experienced by both caregivers and health professionals. Fragile X syndrome (FXS) is the most common single gene cause of ID and ASD, and provides a pertinent model to understand these complexities of care, as well as the communication challenges experienced between caregivers and healthcare professionals. In recent years both caregivers and healthcare professionals have recognized the need for enhancing communication both in clinical and research settings. Knowledge mapping has emerged as a tool to support quality communication between team participants. Here we review how differences in mental models, as well as challenges related to health literacy and knowledge transfer can have an impact on communication. Next, we present different knowledge mapping approaches used in complex situations, with a focus on concept maps and care maps. Finally, we highlight the potential benefits and limitations of mapping to improve communication issues related to caring for individuals with FXS and potentially other neurodevelopmental disorders (NDDs).
format	article
author	Karen Kelm Francois V. Bolduc Francois V. Bolduc Francois V. Bolduc Francois V. Bolduc
author_facet	Karen Kelm Francois V. Bolduc Francois V. Bolduc Francois V. Bolduc Francois V. Bolduc
author_sort	Karen Kelm
title	How Knowledge Mapping Can Bridge the Communication Gap Between Caregivers and Health Professionals Supporting Individuals With Complex Medical Needs: A Study in Fragile X Syndrome
title_short	How Knowledge Mapping Can Bridge the Communication Gap Between Caregivers and Health Professionals Supporting Individuals With Complex Medical Needs: A Study in Fragile X Syndrome
title_full	How Knowledge Mapping Can Bridge the Communication Gap Between Caregivers and Health Professionals Supporting Individuals With Complex Medical Needs: A Study in Fragile X Syndrome
title_fullStr	How Knowledge Mapping Can Bridge the Communication Gap Between Caregivers and Health Professionals Supporting Individuals With Complex Medical Needs: A Study in Fragile X Syndrome
title_full_unstemmed	How Knowledge Mapping Can Bridge the Communication Gap Between Caregivers and Health Professionals Supporting Individuals With Complex Medical Needs: A Study in Fragile X Syndrome
title_sort	how knowledge mapping can bridge the communication gap between caregivers and health professionals supporting individuals with complex medical needs: a study in fragile x syndrome
publisher	Frontiers Media S.A.
publishDate	2021
url	https://doaj.org/article/08018c0ba8d44697ac36bb5426024808
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How Knowledge Mapping Can Bridge the Communication Gap Between Caregivers and Health Professionals Supporting Individuals With Complex Medical Needs: A Study in Fragile X Syndrome

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