Article

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.
CI - (c) 2017 Mac Keith Press.

Langue : ANGLAIS