Care maps or care pathways have a specific connotation in medicine as a best practise series of proceedures related to specific interventions*. They are typically a numbered list. In contrast, the detailed, organized and accessible schematic above was created by a mom to capture the array of worlds in the one child and parent's universe. This strikingly informative map appears on p18 of the presentation by What is essential is invisible to the eye: Families partnering with their pediatricians by Robins and Lewis.
Before clicking to enlarge, lets see what is most visible. There are seven distinct circles of care around this child and exactly 30 orbiting services and teams. Just try and imagine that. How many teams do you interact with intimately in life and work? And then a child arrives that expands that world two-fold or more. Around half of the worlds in this diagram are hospital and rehab hospital clinics and services and the other half are family, school and community based.
Families like to speculate, it is a mechanism for hope. Doctors I think its fair to say, are uncomfortable about speculating on future possibilities but sometimes are tempted to talk more about good outcomes than bad. It is one of the most complicated balances. More on the fun side, lets speculate about positioning and colors and try imagine this families particular world, and in important ways imagine what thousands of families in Canada experience. The family is blood red and roots the feet. The pediatrician is closest of medical supports at the head linking paediatric hospital and rehabilitation hospital in blue and is only one of two of the seven circles with no sub-orbitals. Kids First family network is very bright while provincial FSCD funding is the small black circle at waist level that is small enough to miss but an important band of government supports.
We all make lists and diagrams to 'figure things out'. Why not create a template in powerpoint for parents and staff to partner in navigation. Parents with powerpoint can update themselves, those without can update and printout at clinic. Staff will see things in the community and likely even in their own institution that were invisible. Parents will get a quick jump on their core supports, see them clearly laid out to visualize further relationships or even missed supports, and then bring this personalized map to their staff partnership - parents also get a handy sheet to wave at the sweet question 'So who is helping you?'. This type of map is quite detailed and if you are approaching building this after years of care, consider a less precise but more fun word cloud tool to throw all the big words on a board and then play with the visual presentation. And of course it needs to be added that templates for family care maps augment and do not replace other intimate medical staff communication, like the doodle of the portal vein on the bedsheet, or the wiggly lines in a box connoting the intervention-palliation continuum, or the back to the patient flourish of green ink on white-board.
* "Clinical pathways, also known as care pathways, critical pathways, integrated care pathways, or care maps, are one of the main tools used to manage the quality in healthcare concerning the standardization of care processes. It has been proven that their implementation reduces the variability in clinical practice and improves outcomes. Clinical pathways promote organized and efficient patient care based on the evidence based practice. Clinical pathways optimize outcomes in the acute care and homecare settings."
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