Sherri Adams1,2, David Nicholas3, Sanjay Mahant1,2,4,5, Natalie Weiser1, Ronik Kanani2,6, Katherine Boydell1,2,7, Eyal Cohen1,2,4,5. 1. The Hospital for Sick Children, Toronto, Ontario, Canada. 2. University of Toronto, Toronto, Ontario, Canada. 3. Faculty of Social Work, University of Calgary (Edmonton Division), Edmonton, Alberta, Canada. 4. Institute for Clinical Evaluative Sciences, Toronto, Ontario, Canada. 5. CanChild Center for Childhood Disability Research, Hamilton, Ontario, Canada. 6. North York General Hospital, Toronto, Ontario, Canada. 7. Black Dog Institute, University of New South Wales, Sydney, New South Wales, Australia.
Abstract
AIM: Children with medical complexity require multiple providers and services to keep them well and at home. A care map is a patient/family-created diagram that pictorially maps out this complex web of services. This study explored what care maps mean for families and healthcare providers to inform potential for clinical use. METHOD: Parents (n=15) created care maps (hand drawn n=10 and computer-generated n=5) and participated in semi-structured interviews about the process of developing care maps and their perceived impact. Healthcare providers (n=30) reviewed the parent-created care maps and participated in semi-structured interviews. Data were analysed for themes and emerging theory using a grounded theory analytical approach. RESULTS: Data analysis revealed 13 overarching themes that were further categorized into three domains: features (characteristics of care maps), functions (what care maps do), and emerging outcomes (benefits of care map use). These domains further informed a definition and a theoretical model of how care maps work. INTERPRETATION: Our findings suggest that care maps may be a way of supporting patient- and family-centred care by graphically identifying and integrating experiences of the family as well as priorities for moving forward. WHAT THIS PAPER ADDS: Care maps were endorsed as a useful tool by families and providers. They help healthcare providers better understand parental priorities for care. Parents can create care maps to demonstrate the complex burden of care. They are a unique visual way to incorporate narrative medicine into practice.
AIM: Children with medical complexity require multiple providers and services to keep them well and at home. A care map is a patient/family-created diagram that pictorially maps out this complex web of services. This study explored what care maps mean for families and healthcare providers to inform potential for clinical use. METHOD: Parents (n=15) created care maps (hand drawn n=10 and computer-generated n=5) and participated in semi-structured interviews about the process of developing care maps and their perceived impact. Healthcare providers (n=30) reviewed the parent-created care maps and participated in semi-structured interviews. Data were analysed for themes and emerging theory using a grounded theory analytical approach. RESULTS: Data analysis revealed 13 overarching themes that were further categorized into three domains: features (characteristics of care maps), functions (what care maps do), and emerging outcomes (benefits of care map use). These domains further informed a definition and a theoretical model of how care maps work. INTERPRETATION: Our findings suggest that care maps may be a way of supporting patient- and family-centred care by graphically identifying and integrating experiences of the family as well as priorities for moving forward. WHAT THIS PAPER ADDS: Care maps were endorsed as a useful tool by families and providers. They help healthcare providers better understand parental priorities for care. Parents can create care maps to demonstrate the complex burden of care. They are a unique visual way to incorporate narrative medicine into practice.
Authors: Andrea J Chow; Ryan Iverson; Monica Lamoureux; Kylie Tingley; Isabel Jordan; Nicole Pallone; Maureen Smith; Zobaida Al-Baldawi; Pranesh Chakraborty; Jamie Brehaut; Alicia Chan; Eyal Cohen; Sarah Dyack; Lisa Jane Gillis; Sharan Goobie; Ian D Graham; Cheryl R Greenberg; Jeremy M Grimshaw; Robin Z Hayeems; Shailly Jain-Ghai; Ann Jolly; Sara Khangura; Jennifer J MacKenzie; Nathalie Major; John J Mitchell; Stuart G Nicholls; Amy Pender; Murray Potter; Chitra Prasad; Lisa A Prosser; Andreas Schulze; Komudi Siriwardena; Rebecca Sparkes; Kathy Speechley; Sylvia Stockler; Monica Taljaard; Mari Teitelbaum; Yannis Trakadis; Clara van Karnebeek; Jagdeep S Walia; Brenda J Wilson; Kumanan Wilson; Beth K Potter Journal: BMJ Open Date: 2022-02-22 Impact factor: 2.692
Authors: Lisa Altman; Yvonne Zurynski; Christie Breen; Tim Hoffmann; Susan Woolfenden Journal: BMC Health Serv Res Date: 2018-01-31 Impact factor: 2.655