The Atlas CareMap and CareMap Workshops are leading to a new understanding of care ecosystems in society. To date, such learning has been based on observations and stories from those who have drawn Atlas CareMaps, in workshops or on their own, and from survey responses from workshop participants. Starting in 2018, the Atlas CareMap web app will provide new and additional data for analysis, which we expect to provide further insight into existing care ecosystems.
Inspiring comments and actions by participants in CareMap Workshops and stories from those who have taught themselves the hand-drawn Atlas CareMap using our online materials, make clear that, for some, the impact of the Atlas CareMap is very strong. Some common examples include:
- People discovering they care for more people than they thought—resulting in greater self-identification as “caregiver”
- People discovering that there were more people providing care than they’d realized—leading to a sense of gratitude towards their community
- People discovering that they were just giving, and not receiving care, often due to their own unwillingness to accept care—prompting acknowledgement that this isn’t good, that one can’t be “superman,” and promoting the intention to make changes, to reach out to family and friends to request and accept help
- People discovering that their care recipients are also active caregivers—encouraging understanding and acceptance that the care recipient cannot and will not focus solely on their own wellbeing; they must live, not just be alive
Even family caregiving experts have been surprised by what they have seen or learned about themselves thanks to the Atlas CareMap. Some common examples include:
- The head of a family caregiving support agency, having served her community for decades, volunteered to help facilitate a few workshops. Afterward, she commented that she now has a very different perspective on the needs of her community.
- A social worker whose work is focused on advising family caregivers, after drawing her own family’s Atlas CareMap, realized that she and her sisters had been wrongly criticizing their brother for years. She saw that he, in fact, had been carrying almost all of the load of caring for their parents. She said she needed to call him immediately to apologize and tell him how much she loved him.
Such increased self-awareness and deeper understanding of community needs is leading experts to rethink current approaches to assessing and supporting family caregiving and to try to envision new, more appropriate and useful, approaches.
Starting in April 2017, Workshop participants were asked to fill out a short survey at the end of the sessions. Most participants did so, and by November 2017 about 170 surveys had been collected.
99% of participants have reported being glad to have attended a CareMap Workshop, and 95% reported having learned something new from drawing and studying their own Atlas CareMap.
Usage of the soon to be released Atlas CareMap web app will generate data that can be analyzed to add to our understanding of real-world care ecosystems.
Initial analysis will be of a statistical nature, providing insights into the numbers and types of caregivers and care recipients, geographic distribution, types of care being provided, and more. This may confirm or discredit common hypotheses pertaining to particular groups of caregivers (e.g. “families caring for people with dementia” or “rural caregivers”). We may discover themes around certain caregiving situations, such as multi-generational caregiving and long-distance caregiving.