At first glance, the Atlas CareMap appears to be limited to people who consider themselves “caregivers”, people who are actively caring for someone with a serious health issue. If you learn to draw an Atlas CareMap following the instructions in the tutorial, the first key question is in fact “Who do you care for?”.
However, many do not consider themselves “caregivers”. They might think of themselves as “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. They might think of themselves as “care recipients” because they receive support from family. Or they may think of themselves as spouses, children, parents, friends … as just “people”, doing what people do to care for each other (with no special label).
We have often been asked, by both individuals (people, patients and/or care recipients) and by healthcare professionals, how Atlas CareMaps can be modified so that they can be drawn by such individuals (rather than by “caregivers”).
The simple answer is that no modification is necessary, the Atlas CareMap works fine as it is.
It was designed from the start to work for everyone. This stems from our research findings (and simple observation) that all people (with rare exceptions) 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 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 Atlas 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 don’t think of themselves as “caregivers”, it may help to consider the three core questions, asked during the drawing of an Atlas 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 whose presence in your life is important to your health and wellbeing? For example: Who provides important social and emotional support? Who provides medical 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 with ideas about wellbeing, health conditions, treatments, and services?
Who (all) do you care for? Similarly, you can ask the same question about yourself: Who are the people whose wellbeing benefits from your presence in their lives? What are your activities that are for the care of 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 Atlas CareMaps.
In this example, Lucy lives alone but gets help from her daughter Sharon 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 who 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 an Atlas 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.