ABSTRACT
Introduction
Care coordination is critical for the management of health care needs of children
with Down syndrome by encompassing management of health information and linking of
providers. This study was designed to identify caregiver and health care provider
experiences of care coordination to inform the development of an m-health application.
Method
In this mixed methods study, caregivers completed survey materials addressing the
child's health care needs, m-health use, and care coordination experiences. A sample
of caregivers and health care providers were interviewed to further understanding.
Results
Most caregivers reported having a primary health care provider but wanted increased
communication and help with care coordination. Interview data identified themes related
to care coordination challenges, including information management, information sharing,
use of health care guidelines, tracking health data, resources, technology use, previous
application use, and coordination of schedules.
Discussion
Qualitative themes were linked to desired features of an m-health application to aid
in development.
KEY WORDS
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Article info
Publication history
Published online: October 15, 2022
Footnotes
This research was funded by the National Institutes of Health (grant no. NINR 2T32NR007091-23) and the Sigma Theta Tau Alpha Alpha Chapter Dissertation Grant. Beth Cosgrove was supported as a Kellett Scholar, Linda Waring Matthews Research Scholar, and Madden Research Scholar.
Conflicts of interest: None to report.
Identification
Copyright
Copyright © 2022 by the National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.
