Abstract
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).
Highlights
Neurodevelopmental Disorders Represent a Prevalent Case of Medical ComplexityAmong the many conditions associated with pediatric medical complexity, neurodevelopmental disability (NDD) is one of the most notable as they affect 3–18% of the world’s population [1,2,3,4,5,6,7]
While there are many factors leading to communication challenges in complex medical situations, we found that a key aspect resided in the concepts and categories individuals have developed over time
Our literature review investigated the challenges of communication between caregivers and healthcare providers caring for individuals living with complex health needs, including NDD and Fragile X syndrome (FXS)
Summary
Neurodevelopmental Disorders Represent a Prevalent Case of Medical ComplexityAmong the many conditions associated with pediatric medical complexity, neurodevelopmental disability (NDD) is one of the most notable as they affect 3–18% of the world’s population [1,2,3,4,5,6,7]. The complexity in needs and services for individuals with NDDs tasks caregivers and healthcare professionals with enormous responsibilities [12]. Caregivers often become a “manager” for their child: advocating for and coordinating their child’s care, managing communication between healthcare and social providers, implementing therapeutic recommendations, and maintaining their child’s medical health information and records [16,17,18]. Children living with multiple health complexities belong to a unique population that demands ongoing continuous care and utilizes a disproportionate amount of healthcare services [12, 13, 16, 17, 19,20,21,22]. Healthcare professionals can be required to provide care that often extends beyond their capacity due to limitations in skills, psychosocial support, opportunities for continuing education, or lack of resources [13, 23, 24]
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