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Dev Med Child Neurol. 2017 Dec;59(12):1299-1306. doi: 10.1111/dmcn.13576. Epub 2017 Oct 6.

Care maps for children with medical complexity.

Adams S1,2, Nicholas D3, Mahant S1,2,4,5, Weiser N1, Kanani R2,6, Boydell K1,2,7, Cohen E1,2,4,5.

Author information

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.

Comment in

PMID:
28984353
DOI:
10.1111/dmcn.13576
[Indexed for MEDLINE]
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