Affiliations: [a] Department of Pediatrics, The University of Virginia Medical School, Charlottesville, VA, USA | [b] Department of Internal Medicine, New York University Langone Health, New York, NY, USA | [c] School of Nursing, The University of Virginia, Charlottesville, VA, USA
Correspondence:
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Corresponding author: James Plews-Ogan, UVA Children’s Hospital, P.O. Box 800386, Charlottesville, VA 22908, USA. Tel.: +1 434 296 8666; E-mail: [email protected].
Abstract: Employing a cross-sectional qualitative descriptive design, using individual, semi-structured interviews collected from primary care and specialty clinicians who routinely care for children with medical complexity (CMC) in a largely rural area in central Virginia, this study aimed to better understand the current state of care, the motivations, and barriers for expansion of care for CMC in a semi-rural academic hospital center. Five themes emerged describing the current practice of the participants: (1) complexities of care, (2) compassion and empathy for families, (3) limited resources, (4) essential nature of coordination and teamwork, and (5) proximity to care. Each of the five themes that emerged from our interviews present both challenges and rewards. The theme of compassion for families of CMC is seen as a key potential motivational driver for expansion and reorganization of clinical care for CMC.
Keywords: Children with medical complexity, coordination of care, compassionate care
