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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Bibliographic Details
Published inFrontiers in psychiatry Vol. 12; p. 731011
Main Authors Kelm, Karen, Bolduc, Francois V
Format Journal Article
LanguageEnglish
Published Switzerland Frontiers Media S.A 24.11.2021
Subjects
care mapping
communication
Fragile X syndrome
knowledge mapping
medical complexity
mental model
Psychiatry
medical complexity
concept mapping
mental model
knowledge mapping
Fragile X syndrome
communication
care mapping
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Summary: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).
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This article was submitted to Child and Adolescent Psychiatry, a section of the journal Frontiers in Psychiatry
Edited by: Sara Calderoni, Fondazione Stella Maris (IRCCS), Italy
Reviewed by: Esperanza Fernandez, Ghent University, Belgium; Darpan Kaur, Mahatma Gandhi Missions Medical College and Hospital, India; Antonio Mendoza Diaz, University of New South Wales, Australia
ISSN:1664-0640
1664-0640
DOI:10.3389/fpsyt.2021.731011