Uncovering Community Wisdom Amongst Santa Barbara Family Caregivers

Key Takeaways

  • Atlas CareMaps serve as a catalyst to spark social, peer-to-peer conversations about family caregiving, resulting in uncovering community wisdom and strengthening community bonds.
  • Once people begin to map their care relationships, they start to see them everywhere.
  • The response to the experimental methods explored in Mapping Yourself shows that there is the potential for developing many more self-learning tools, like the Atlas CareMap, for caregiving.
  • Even deeply engaged family caregivers discover that they can learn so much more about their circumstances, and that this knowledge is worthwhile both emotionally and practically.
  • Professionals and institutions found such clear benefits in using Atlas CareMaps in their work that they are experimenting on how to incorporate Atlas CareMaps into their basic processes.
  • Grant making organizations are so convinced by the impact they have seen that they are requiring grantees to leverage Atlas CareMaps.

This is the first in a series of five blog posts on the 2017 Mapping Santa Barbara project. In the next three posts, we’ll examine in more detail: the transformational impact experienced by the Promotores; the discoveries of those involved in Mapping Yourself; and institutional adoption of Atlas CareMaps. The final post describes how the community continues to innovate to expand on its success. You can download the full Mapping Santa Barbara final report.

 

In 2017, family caregivers and social workers in Santa Barbara, California were introduced to novel tools to closely examine family caregiving situations. By design, the initial learning happened in group settings. The combination of deeper self-awareness plus opening the door to social, peer-to-peer conversation has resulted in uncovering community wisdom and strengthening community bonds. Local leaders describe the impact as nothing less than transformational.

The Mapping Santa Barbara project was led by Atlas of Caregiving, and funded by the Santa Barbara Foundation. Three local institutions were key collaborators: Family Service Agency (FSA), a nonprofit social services organization; Marian Regional Medical Center, a Dignity Health hospital; and Promotores de Salud, a grassroots organization serving the Latino community.

Mapping Santa Barbara had two project elements. One was to “Explore CareMap Adoption and Impact” through exposing many people to the Atlas CareMap concept and exploring how the partner institutions could incorporate Atlas CareMaps into their own efforts. (An Atlas CareMap, simply described is a diagram of a family’s care ecosystem, showing who is caring for whom and how. Atlas CareMaps can be drawn by hand or by computer.)

Overall, more than 100 people participated in twelve Atlas-led CareMap Workshops, held in either English or Spanish. These Workshops taught participants how to hand-draw their own Atlas CareMaps, and how to learn from and act upon what they had drawn. Participants discussed their drawings and discoveries with each other. About 30 staff and volunteers from the partner institutions also received training to lead such workshops themselves.

Many workshop participants reported major changes in their lives resulting from what they discovered about their own caregiving situations, and from subsequent conversations with family members. The ripple effects have been very strong, as participants have gone on to teach the Atlas CareMap to hundreds of family, friends, colleagues, and other other community members. FSA and Marian social workers have found Atlas CareMaps very useful in their work. Promotores describe a profound change in their impact on their community.

“When the project launched, we didn’t know what we were in for and what an amazing opportunity it was! The findings were nothing short of transformative—both on a personal level and a community level.” Phylene Wiggins, Senior Director of Community Investments, Santa Barbara Foundation

As a result, many organizations across Santa Barbara County, private and public, have adopted Atlas CareMaps as fundamental to their efforts and/or are eagerly exploring how to do so. The Santa Barbara Foundation is now requiring future caregiving-focused grantees to incorporate Atlas CareMaps into their work, as is the local Area Agency on Aging (the first time they have ever imposed such a requirement). “When the project launched, we didn’t know what we were in for and what an amazing opportunity it was! The findings were nothing short of transformative—both on a personal level and a community level,” said Phylene Wiggins, Senior Director of Community Investments, Santa Barbara Foundation

The other project element, called “Mapping Yourself With Guidance”, involved a small group of family caregivers meeting in four, monthly sessions. They explored new methods for investigating and assessing their own caregiving activities and contexts. While the caregivers themselves collected data and reflected on their findings, experts provided guidance on tools and methods they could use for this purpose, as well as on how to think about and glean meaning from the data collected. They experimented with sensor devices to track movement and sleep; paper-based tools (the Atlas CareMap, and a newly developed visual activity log) to track activities, interactions and emotions; and a concept of “track-1-thing” to understand the impact of just one type of activity. Those who choose to participate were already deeply engaged in and committed to their caregiving activities, and yet they learned a lot about themselves and their situations. They also told us how much they enjoyed the process.

The transformational impact both the Atlas CareMap-related and Mapping Yourself efforts have had on individuals, families and the community points to several opportunities to further improve family caregiving in Santa Barbara County. Experimentation continues in 2018.