Other Titles
Development of a Novel Knowledge Translation (KT) Tool for Parents of Children With Intellectual Developmental Disorders (IDD) Seeking Emergency Care [Title Slide]
Abstract
Background: Children with intellectual developmental disorders (IDD) are generally defined as those under 18 years old who have conditions that can adversely impact their physical, intellectual, and/or emotional development. Taking a child to an emergency department (ED) is often unexpected and stressful for the parents and child. Children with IDDs are among the highest users of emergency health care services in their age group (3), with complex and challenging ED experiences. Digital knowledge translation (KT) tools can effectively share experiences and health information while addressing the learning needs of parents.
The aim of this study is to report on the development of a novel KT tool (i.e., interactive infographic) for parents of children with IDD that supports positive experiences in the ED and meets parent information needs.
Methods: A mixed-methods systematic review (SR) was conducted to synthesize previous research about parent information needs and experiences related to bringing a child with IDD to an ED (10). Semi-structure interviews were conducted with parents of a child with IDD to gather self-reported experiences and information needs. Merging these results, a KT tool was co-developed with key partners. Following iterative feedback cycles, a finalized KT tool will undergo usability testing before being widely disseminated.
Findings: The SR (n=7 studies) highlighted parents’ disappointment and frustration when seeking care in the ED. Parents worried about lengthy wait times and the limited management of their child’s behaviors of concern. Parents wanted better communication with healthcare providers and a greater understanding by staff around their child’s needs. Little data was available relating to parents’ information needs. Parents expressed uncertainty about when to go to the ED and described preparing mentally and physically for a long visit. Parents identified communication as a significant challenge and noted the need to request extra support for their child. Frustration was common and parents felt the need to advocate for their child throughout the ED visit. A KT tool was codeveloped with parents based on these findings.
Conclusions: Our findings support the importance of understanding drivers of parents’ expectations and care decisions in the ED. This research highlights the critical need for ongoing collaboration between ED healthcare providers and families to enhance patient-centered care and supports for children with IDD.
Sigma Membership
Mu Sigma
Type
Presentation
Format Type
Text-based Document
Study Design/Type
Systematic Review
Research Approach
Mixed/Multi Method Research
Keywords:
Academic-clinical Partnership, Intellectual Developmental Disorders, Children, Emergency Department Visits, Knowledge Translation Tools
Recommended Citation
Scott, Shannon; Elliott, Sarah; Brooks, Hannah M.; Erdmann, Gwen; and Hartling, Lisa, "Development of a Novel KT Tool for Parents of Children With IDD Seeking Emergency Care" (2025). International Nursing Research Congress (INRC). 256.
https://www.sigmarepository.org/inrc/2025/presentations_2025/256
Conference Name
36th International Nursing Research Congress
Conference Host
Sigma Theta Tau International
Conference Location
Seattle, Washington, USA
Conference Year
2025
Rights Holder
All rights reserved by the author(s) and/or publisher(s) listed in this item record unless relinquished in whole or part by a rights notation or a Creative Commons License present in this item record.
Review Type
Abstract Review Only: Reviewed by Event Host
Acquisition
Proxy-submission
Development of a Novel KT Tool for Parents of Children With IDD Seeking Emergency Care
Seattle, Washington, USA
Background: Children with intellectual developmental disorders (IDD) are generally defined as those under 18 years old who have conditions that can adversely impact their physical, intellectual, and/or emotional development. Taking a child to an emergency department (ED) is often unexpected and stressful for the parents and child. Children with IDDs are among the highest users of emergency health care services in their age group (3), with complex and challenging ED experiences. Digital knowledge translation (KT) tools can effectively share experiences and health information while addressing the learning needs of parents.
The aim of this study is to report on the development of a novel KT tool (i.e., interactive infographic) for parents of children with IDD that supports positive experiences in the ED and meets parent information needs.
Methods: A mixed-methods systematic review (SR) was conducted to synthesize previous research about parent information needs and experiences related to bringing a child with IDD to an ED (10). Semi-structure interviews were conducted with parents of a child with IDD to gather self-reported experiences and information needs. Merging these results, a KT tool was co-developed with key partners. Following iterative feedback cycles, a finalized KT tool will undergo usability testing before being widely disseminated.
Findings: The SR (n=7 studies) highlighted parents’ disappointment and frustration when seeking care in the ED. Parents worried about lengthy wait times and the limited management of their child’s behaviors of concern. Parents wanted better communication with healthcare providers and a greater understanding by staff around their child’s needs. Little data was available relating to parents’ information needs. Parents expressed uncertainty about when to go to the ED and described preparing mentally and physically for a long visit. Parents identified communication as a significant challenge and noted the need to request extra support for their child. Frustration was common and parents felt the need to advocate for their child throughout the ED visit. A KT tool was codeveloped with parents based on these findings.
Conclusions: Our findings support the importance of understanding drivers of parents’ expectations and care decisions in the ED. This research highlights the critical need for ongoing collaboration between ED healthcare providers and families to enhance patient-centered care and supports for children with IDD.
Description
The aim of this presentation is to share the co-development process of a novel knowledge translation tool for parents of children with intellectual and developmental disabilities that supports positive experiences in the emergency department and meets parent information needs.