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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
    Correspondence
    Correspondence: Beth Cosgrove, PhD, MSN, CPNP-PC, School of Nursing, University of North Carolina at Chapel Hill, Carrington Hall, S. Columbia St., Chapel Hill, NC 27599
    Affiliations
    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
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  • Kathleen Knafl
    Affiliations
    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
    Search for articles by this author
  • Marcia Van Riper
    Affiliations
    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
    Search for articles by this author
Published:October 15, 2022DOI:https://doi.org/10.1016/j.pedhc.2022.08.002

      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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