Article| Volume 31, ISSUE 5, P555-559, September 2017

Stakeholders' Perceptions of Care Coordination: A Participatory Process



      Children with special health care needs or chronic conditions are more likely to have unmet health needs than other children. The purpose of this study was to use a community engagement research strategy to assess the essential elements of care coordination that can serve as the foundation for a system-wide care coordination model for children with special health care needs.

      Study Design

      As part of a summit designed to review the status of pediatric care coordination within the state of Arizona and a call to action, a qualitative descriptive study was conducted to solicit anonymous feedback from 104 stakeholders (family, health care provider, or community entity) on the strengths and areas of improvement in the current system that provides care to Arizona children with special health care needs. Data were analyzed using inductive content analysis.


      Five essential categories crucial to building an effective and seamless care coordination model were extracted from the data: Communication, Insurance, Health Care Capacity, Provider Knowledge, and Family Education.


      The results from this study can serve as the working foundation to build a system-wide model for pediatric care coordination throughout the state. Providing care coordination services involves many activities across a wide range of organizations and locations. Research that is inclusive of community stakeholders can determine essential components for building a foundation for care coordination.

      Key Words

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Journal of Pediatric Health Care
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Centers for Disease Control and Prevention
        National survey of children with special health care needs.
        Author, Atlanta, GA2012 (Retrieved from)
        • Drummond A.
        • Looman W.S.
        • Phillips A.
        Coping among parents of children with special health care needs with and without a health care home.
        Journal of Pediatric Health Care. 2012; 26: 266-275
        • Elo S.
        • Kyngas H.
        The qualitative content analysis process.
        Journal of Advanced Nursing. 2008; 62: 107-115
        • Feinberg J.
        2014 (Retrieved from
        • Ghandour R.M.
        • Perry D.F.
        • Kogan M.D.
        • Strickland B.B.
        The medical home as a mediator of the relation between mental health symptoms and family burden among children with special health care needs.
        Academic Pediatrics. 2011; 11: 161-169
        • Holroyd-Leduc J.
        • Resin J.
        • Ashley L.
        • Barwich D.
        • Elliott J.
        • Huras P.
        • Muscedere J.
        Giving voice to older adults living with frailty and their family caregivers: Engagement of older adults living with frailty in research, health care decision making, and in health policy.
        Research Involvement and Engagement. 2016; 2: 23
        • Kastner T.A.
        Managed care and children with special health care needs.
        Pediatrics. 2004; 114: 1693-1698
        • Kuo D.Z.
        • Cohen E.
        • Agrawal R.
        • Berry J.G.
        • Casey P.H.
        A national profile of caregiver challenges among more medically complex children with special health care needs.
        Archives of Pediatric and Adolescent Medicne. 2011; 165: 1020-1026
        • Kuo D.Z.
        • Robbins J.M.
        • Lyle R.E.
        • Barrett K.W.
        • Burns K.H.
        • Casey P.H.
        Parent-reported outcomes of comprehensive care for children with medical complexity.
        Families, Systems and Health. 2013; 31: 132-141
        • Lewis M.
        • Vitulano L.A.
        Biopsychosocial issues and risk factors in the family when the child has a chronic illness.
        Child and Adolescent Psychiatric Clinics of North America. 2003; 12: 389-399
        • National Institute for Health and Clinical Excellence
        Community engagement: improving health and wellbeing and reducing health inequalities.
        Author, London, UK2016
        • Payot A.
        • Barrington K.J.
        The quality of life of young children and infants with chronic medical problems: Review of the literature.
        Current Problems in Pediatric and Adolescent Health Care. 2011; 41: 91-101


      Annmarie A. Lyles, Assistant Professor, Arizona State University, College of Nursing & Health Innovation, Phoenix, AZ.


      Penny Morgan Overgaard, PhD student, University of Arizona, College of Nursing, Phoenix, AZ.


      Grace L. Caputo, Professor of Pediatrics, Department of Child Health, University of Arizona College of Medicine–Phoenix, Phoenix, AZ.


      Elizabeth Reifsnider, Nancy Melvin Professor and Associate Dean for Research, Honors Faculty, Arizona State University, College of Nursing & Health Innovation, Phoenix, AZ.