Many people consider themselves “patients”, by which they mean they have one or more conditions — an illness, a disability, an injury, or simply the effects of getting older — that may benefit from the advice of medical professionals.
We have often been asked, by both such patients and by healthcare professionals, how Atlas CareMaps can be modified so that they can be drawn by patients (rather than by their family caregivers).
The simple answer is that no modification is necessary, the CareMap works fine as it is.
It was designed from the start to work for caregivers and patients. This stems from our research findings (and simple observation) that many, if not most, people are simultaneously caring for themselves (doing “self-care”), involved in the care of relatives and friends (being “caregivers”), and being cared for by relatives, friends and professionals (being “care recipients” or “patients”). Therefore it is unhelpful to give these people only a single label (e.g. “patient”). It is better to acknowledge the variety of actions, of activities of care — of self-care, caregiving, and care receiving — that each person does. The CareMap is fundamentally designed to focus on such activities amongst people, and so it works for everyone. With the end result being a multi-directional network of people and services.
However, for those who think of themselves as patients, it may help to consider the three core questions, asked during the drawing a CareMap, in a different order.
The three questions are:
Let’s consider them in a different order.
Who cares for or supports you? Who are the people and institutions who are important to your health and wellbeing? For example: Who provides medical support? Who provides important social and emotional support? Who helps with personal or household activities that you are unable to manage yourself? Who helps with the financial costs incurred because of health issues? Who helps you research health conditions, treatments, and services?
Who (all) do you care for? Similarly, you can ask the same questions about your own activities, about what you do to care for others (people or pets). For example: Do you help anyone with medical activities? Do you provide social or emotional support to anyone? Do you help anyone with personal or household activities that they can’t manage themselves? Do you help anyone cover some of the financial costs due to health issues? Do you help anyone with advice on health conditions, treatments, and services?
Even if you are ill or frail, you might still be caring for children, spouses, parents, pets, neighbors, and friends. Sometimes there is no choice — you must help despite your own situation. Sometimes it is much more than that — caring for others is a core part of our being, our identity as a member of a family and community.
Who else cares for them? Those same questions apply again — who else cares for the people you care for?
Once you have a sense of the answers to these three core questions, you can easily follow the regular instructions to draw and use CareMaps.
In this simple example, Lucy lives alone but gets help from her daughter who lives nearby. Lucy reciprocates by babysitting for her grandson Bobby. Her son Joe lives too far away to help frequently but does send money to help with medical and household expenses, such as a housekeeper comes once a week. Lucy has a friend, Maria, who both provides emotional support and looks to Lucy for advice. Lucy has other friends in a prayer circle. She uses city transportation to shop and go to medical appointments.
This example is included in a forthcoming book by Carol Levine, Director of the Families and Health Care Project, United Hospital Fund.
If you wish to indicate on a CareMap that you or someone else is actively engaged in your or their own care, it is easy to do so. Just draw an arrow from the person to himself, just like any other arrow showing who cares for whom and how — as shown in these two examples. In the hand-drawn example, Pablo is involved in his own care, even while his mother, father, and school nurse care for him. In the digital example, James cares for himself, even while his son, daughter and doctors care for him, and he cares for his wife.