A Mixed Methods Analysis of Care Coordination Needs and Desirable Features of an M-Health Application to Support Caregivers of Children With Down Syndrome

Beth Cosgrove; Kathleen Knafl; Marcia Van Riper

doi:10.1016/j.pedhc.2022.08.002

A Mixed Methods Analysis of Care Coordination Needs and Desirable Features of an M-Health Application to Support Caregivers of Children With Down Syndrome

J Pediatr Health Care. 2023 Jan-Feb;37(1):30-39. doi: 10.1016/j.pedhc.2022.08.002. Epub 2022 Oct 17.

Authors

Beth Cosgrove¹, Kathleen Knafl², Marcia Van Riper²

Affiliations

¹ Beth Cosgrove, Assistant Professor, School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC; Kathleen Knafl, Professor, School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC; Marcia Van Riper, Professor, School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC. Electronic address: beth11@email.unc.edu.
² Beth Cosgrove, Assistant Professor, School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC; Kathleen Knafl, Professor, School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC; Marcia Van Riper, Professor, School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC.

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.

Keywords: Care coordination; Down syndrome; caregiver; information management; m-health.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

MeSH terms

Caregivers
Child
Communication
Delivery of Health Care
Down Syndrome* / therapy
Humans
Telemedicine*

Grants and funding

T32 NR007091/NR/NINR NIH HHS/United States