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ORIGINAL RESEARCH article

Front. Pediatr.
Sec. Children and Health
Volume 12 - 2024 | doi: 10.3389/fped.2024.1449255
This article is part of the Research Topic Interdisciplinary Approaches to Address Health Disparities for Intellectual and Developmental Disabilities from Underserved Communities View all articles

Transferable Lessons for Care Provided to Children with Intellectual and Developmental Disabilities Based on an Analysis of Facilitators and Barriers to SARS-CoV-2 Testing

Provisionally accepted
George Gotto George Gotto 1*Jeriel Bohall Jeriel Bohall 1Rachel Northrup Rachel Northrup 2Cheryl Lyn Errichetti Cheryl Lyn Errichetti 2Danielle Chiang Danielle Chiang 1Maureen Van Stone Maureen Van Stone 2Erin F. Jones Erin F. Jones 2Megan Meck Megan Meck 2Luther Kalb Luther Kalb 2
  • 1 Institute for Human Development, University of Missouri Kansas City, Kansas City, United States
  • 2 Kennedy Krieger Institute, Baltimore, United States

The final, formatted version of the article will be published soon.

    The purpose of this article is to report on the lessons learned from parents and caregivers of schoolage children with intellectual and developmental disabilities (IDD) in Missouri and Maryland regarding the facilitators and barriers to SARS-COV-2 testing. Parents participated in interview sessions that employed fuzzy cognitive mapping (FCM), a reliable knowledge-based method that facilitates democratic discourse to understand how stakeholders make decisions. A total of 94 parents from Missouri (58) and Maryland (36) participated in the FCM sessions. Eight primary barriers and eight primary facilitating factors were identified that influence a successful SARS-COV-2 test. Analyzing the connections between these factors provided valuable information about not only which ideas were most central to the goal of a successful test, but also which factors could be modified to improve the likelihood of success. Results indicate that the physical environment and child preparedness play a central role in successful SARS-COV-2 testing for children with IDD; however, these factors within the context of other invasive procedures should be studied further. It is likely that the findings from this study are transferable to other diagnostic procedures such as influenza, respiratory syncytial virus (RSV), and methicillin-resistant Staphylococcus aureas (MRSA), which require similar testing techniques using a nasopharyngeal swab.

    Keywords: SARS-CoV-2 testing, Children with IDD, Successful Treatment Models, Fuzzy cognitive mapping (FCM), stakeholder engagement

    Received: 14 Jun 2024; Accepted: 08 Oct 2024.

    Copyright: © 2024 Gotto, Bohall, Northrup, Errichetti, Chiang, Van Stone, Jones, Meck and Kalb. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence: George Gotto, Institute for Human Development, University of Missouri Kansas City, Kansas City, United States

    Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.