Sherri Adams1,2,3, David Nicholas4, Sanjay Mahant1,3,5, Natalie Weiser1, Ronik Kanani6,5, Katherine Boydell7,8,9, Eyal Cohen1,3,5. 1. Division of Paediatric Medicine, Department of Pediatrics, The Hospital for Sick Children, Toronto, Ontario, Canada. 2. Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada. 3. Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Ontario, Canada. 4. Faculty of Social Work, University of Calgary (Edmonton Division), Edmonton, Alberta, Canada. 5. Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada. 6. Maternal, Newborn and Paediatric Care Program, North York General Hospital, Toronto, Ontario, Canada. 7. Black Dog Institute, University of New South Wales, Randwick, New South Wales, Australia. 8. Child and Youth Mental Health Research Unit, The Hospital for Sick Children, Toronto, Ontario, Canada. 9. Dalla Lana School of Public Health, Universality of Toronto, Toronto, Ontario, Canada.
Abstract
INTRODUCTION: The support of families in the care of children with medical complexity (CMC) requires the integration of health care providers' (HCPs') medical knowledge and family experience. Care plans largely represent HCP information, and care maps demonstrate the family experience. Understanding the intersection between a care plan and a care map is critical, as it may provide solutions to the widely recognized tension between HCP-directed care and patient- and family-centered care (PFCC). METHOD: This study used qualitative methods to explore the experience and usefulness of care maps. Parents of CMC who already had a care plan, created care maps (n = 15). Subsequent interviews with parents (n = 15) and HCPs (n = 30) of CMC regarding both care maps and care plans were conducted and analyzed using thematic analysis. RESULTS: Data analysis exploring the relationship and utility of care plans and care maps revealed six primary themes related to using care plans and care maps that were grouped into two primary categories: (a) utility of care plans and maps; and (b) intersection of care plans and care maps. DISCUSSION: Care plans and care maps were identified as valuable complementary documents. Their integration offers context about family experience and respects the parents' experiential wisdom in a standard patient care document, thus promoting improved understanding and integration of the family experience into care decision making.
INTRODUCTION: The support of families in the care of children with medical complexity (CMC) requires the integration of health care providers' (HCPs') medical knowledge and family experience. Care plans largely represent HCP information, and care maps demonstrate the family experience. Understanding the intersection between a care plan and a care map is critical, as it may provide solutions to the widely recognized tension between HCP-directed care and patient- and family-centered care (PFCC). METHOD: This study used qualitative methods to explore the experience and usefulness of care maps. Parents of CMC who already had a care plan, created care maps (n = 15). Subsequent interviews with parents (n = 15) and HCPs (n = 30) of CMC regarding both care maps and care plans were conducted and analyzed using thematic analysis. RESULTS: Data analysis exploring the relationship and utility of care plans and care maps revealed six primary themes related to using care plans and care maps that were grouped into two primary categories: (a) utility of care plans and maps; and (b) intersection of care plans and care maps. DISCUSSION: Care plans and care maps were identified as valuable complementary documents. Their integration offers context about family experience and respects the parents' experiential wisdom in a standard patient care document, thus promoting improved understanding and integration of the family experience into care decision making.
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Authors: Gregory Costain; Susan Walker; Maria Marano; Danielle Veenma; Meaghan Snell; Meredith Curtis; Stephanie Luca; Jason Buera; Danielle Arje; Miriam S Reuter; Bhooma Thiruvahindrapuram; Brett Trost; Wilson W L Sung; Ryan K C Yuen; David Chitayat; Roberto Mendoza-Londono; D James Stavropoulos; Stephen W Scherer; Christian R Marshall; Ronald D Cohn; Eyal Cohen; Julia Orkin; M Stephen Meyn; Robin Z Hayeems Journal: JAMA Netw Open Date: 2020-09-01