Group Concept Mapping Conceptualizes High Quality Care for Long Stay Pediatric Intensive Care Unit Patients and Families


Brian D. Leland, Division of Pediatric Critical Care, Department of Pediatrics, Indiana University School of Medicine, Indianapolis, Indiana; Charles Warren Fairbanks Center for Medical Ethics, Indianapolis, Indiana. Electronic address:
Lucia D. Wocial, John J. Lynch, MD Center for Ethics, MedStar Washington Hospital Center, Washington, DC.
Vanessa N. Madrigal, Division of Critical Care Medicine, Department of Pediatrics, George Washington University School of Medicine and Health Sciences, Washington, DC; Pediatric Ethics Program, Children's National Hospital, Washington, DC.
Michelle M. Moon, Palliative Care and Symptom Management, Swedish Health Systems, Issaquah, Washington.
Cheryl Ramey-Hunt, Integrated Care Management, Case Management, and Social Work, Indiana University Health & Riley Hospital for Children, Indianapolis, Indiana.
Jennifer K. Walter, Department of Pediatrics, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania; Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania; Pediatric Advanced Care Team, Justin Michael Ingerman Center for Palliative Care, The Children's Hospital of Philadelphia, Pennsylvania; Center for Pediatric Clinical Effectiveness , The Children's Hospital of Philadelphia, Pennsylvania.
Jennifer D. Baird, Institute for Nursing and Interprofessional Research, Children's Hospital Los Angeles, California.
Jeffrey D. Edwards, Section of Critical Care, Department of Pediatrics, Columbia University Vagelos College of Physician and Surgeons, New York, New York.

Document Type

Journal Article

Publication Date



The Journal of pediatrics




Continuity of Patient Care; Critical Care; Critical Care Outcomes; Length of Stay; Pediatrics


OBJECTIVE: (s): To describe and conceptualize high-quality care for long stay Pediatric Intensive Care Unit (PICU) patients using Group Concept Mapping (GCM). We convened an expert panel to elucidate domains of high-quality care for this growing patient population for which transitory care models fail to meet their needs. STUDY DESIGN: Thirty-one healthcare professionals and 7 parents of patients with previous prolonged PICU hospitalizations comprised a diverse, interprofessional, multidisciplinary panel. Participants completed the prompt "For PICU patients and families experiencing prolonged lengths of stay, high quality care from the medical team includes ______" with unlimited free text responses. Responses were synthesized into individual statements, then panelists sorted by idea similarity and rated by perceived importance. Statement analysis using GCM software through GroupWisdom generated nonoverlapping clusters representing domains of high-quality care. RESULTS: Participants submitted 265 prompt responses representing 313 unique ideas, resulting in 78 final statements for sorting and rating. The resultant cluster map best representing the data contained 8 domains: 1) Family Centered Care and Shared Decision Making, 2) Humanizing the Patient, 3) Clinician Supports and Resources, 4) Multidisciplinary Coordination of Care, 5) Family Well Being, 6) Anticipatory Guidance and Care Planning, 7) Communication, and 8) Continuity of Care. CONCLUSION: (s): GCM empowered a panel of healthcare professionals and parents to explicitly describe and conceptualize high-quality care for patients and families experiencing prolonged PICU stays. This information will assist in the effort to address shortcomings of transitory PICU care models.