Citizens League
Report date
March 2021
What has been most instrumental to your progress?
Humility
One of the elements that has allowed us to uncover new thinking and unique caregiving experiences is humility: we cannot know what is outside of ourselves and our experiences. Inclusivity is central to any meaningful community innovation, yet without humility or curiosity to learn from others, inclusivity may not allow for problem framing or solution development that is responsive to those most impacted by the challenges of sandwich caregiving. By creating a Human Centered Design (HCD) approach for shared exploration and decision making with communities, we ensured that the process of generating and synthesizing findings would be guided by those most familiar with the community, culture, and history. In sharing power in the “research” process we were able to “follow the lead” of the community and were often confronted with the realizations such as: “we would have never thought to ask that question” or “we never thought about the challenge that way before.” Humility, and the ability to create shared power structures in the problem framing and solving process is essential if we ever hope to truly address the systemic disparities that exist within our caregiving systems.
One of the elements that has allowed us to uncover new thinking and unique caregiving experiences is humility: we cannot know what is outside of ourselves and our experiences. Inclusivity is central to any meaningful community innovation, yet without humility or curiosity to learn from others, inclusivity may not allow for problem framing or solution development that is responsive to those most impacted by the challenges of sandwich caregiving. By creating a Human Centered Design (HCD) approach for shared exploration and decision making with communities, we ensured that the process of generating and synthesizing findings would be guided by those most familiar with the community, culture, and history. In sharing power in the “research” process we were able to “follow the lead” of the community and were often confronted with the realizations such as: “we would have never thought to ask that question” or “we never thought about the challenge that way before.” Humility, and the ability to create shared power structures in the problem framing and solving process is essential if we ever hope to truly address the systemic disparities that exist within our caregiving systems.
Adaptability & Action-oriented
Any successful community-focused effort must be flexible and adaptive. In the midst of a global pandemic and the racial unrest following the murder of George Floyd, that mindset was critical. Instead of trying to maintain a predetermined plan, we looked to learn from the disruptions of 2020 and the inequalities that place a disproportionate and growing burden on BIPOC communities. The team used this as a prompt to hone our deliverables to reframe persistent caregiving issues that amplify disparities, rather than accommodate the system that continues to produce them.
Tackling such significant and dynamic challenges can be daunting, but our approach (an iterative co-design process) of “just starting” served us well and allowed us to move beyond admiring the problem. Through a rapid but thoughtful iterative approach, we were able to expose our biases and avoid groupthink and tokenism that can get baked into program and policy development. This approach fostered the emergence of insights that would have been otherwise inaccessible. For example, the vast majority of participants did not identify with the term “caregiver,” and even found disrespectf
Any successful community-focused effort must be flexible and adaptive. In the midst of a global pandemic and the racial unrest following the murder of George Floyd, that mindset was critical. Instead of trying to maintain a predetermined plan, we looked to learn from the disruptions of 2020 and the inequalities that place a disproportionate and growing burden on BIPOC communities. The team used this as a prompt to hone our deliverables to reframe persistent caregiving issues that amplify disparities, rather than accommodate the system that continues to produce them.
Tackling such significant and dynamic challenges can be daunting, but our approach (an iterative co-design process) of “just starting” served us well and allowed us to move beyond admiring the problem. Through a rapid but thoughtful iterative approach, we were able to expose our biases and avoid groupthink and tokenism that can get baked into program and policy development. This approach fostered the emergence of insights that would have been otherwise inaccessible. For example, the vast majority of participants did not identify with the term “caregiver,” and even found disrespectf
Engaging Those with Lived Experiences
We found value in an “outside-in” approach that centers lived experience throughout the process, ensuring we not only developed useful solutions, but more importantly, addressed the challenges that matter most to the community. Experts often focus on specific resources and programs, but we found that communities cared more about meaning, purpose and agency, all of which are difficult to respond to if you are only focused on providing technical resources or programs.
For example, many participants discussed that caregiving occurs in groups or units of care, rarely in isolation. Yet most noted that resources and services are often only targeted at the individual-level. This insight suggests the need to develop policies and resources that respond to the family and community-scale of caregiving. We found that framing challenges through the lens of lived experiences is a very efficient way to work and test assumptions; before spending significant resources and time developing solutions to problems that are not reflective of the communities dealing with them.
We found value in an “outside-in” approach that centers lived experience throughout the process, ensuring we not only developed useful solutions, but more importantly, addressed the challenges that matter most to the community. Experts often focus on specific resources and programs, but we found that communities cared more about meaning, purpose and agency, all of which are difficult to respond to if you are only focused on providing technical resources or programs.
For example, many participants discussed that caregiving occurs in groups or units of care, rarely in isolation. Yet most noted that resources and services are often only targeted at the individual-level. This insight suggests the need to develop policies and resources that respond to the family and community-scale of caregiving. We found that framing challenges through the lens of lived experiences is a very efficient way to work and test assumptions; before spending significant resources and time developing solutions to problems that are not reflective of the communities dealing with them.
Key lessons learned
System-level Challenges
While a siloed approach to problem solving works well to address complicated challenges, it can be detrimental when attempting to tackle challenges, like sandwich caregiving, where the whole is more than a sum of the parts. One of our earliest findings to illustrate this difference is that while many experts in the caregiving fields were focused on the need for more technical resources for caregivers, most community co-designers noted that services and resources tended to not respond to cultural differences, often required some level of resource, and often were not worth the effort required to navigate them. What they were asking for was space and flexibility to directly provide care for those they were caring for. The challenge with system-level challenges is that it can be very difficult to understand the scope and scale of the issues and even more difficult in understanding what could be done to address them. We learned that an individual’s lived experiences are a great way to humanize and simplify issues that can otherwise be overly complex and abstract; and offer pathways to understanding key system points or levers of greatest potential impact.
While a siloed approach to problem solving works well to address complicated challenges, it can be detrimental when attempting to tackle challenges, like sandwich caregiving, where the whole is more than a sum of the parts. One of our earliest findings to illustrate this difference is that while many experts in the caregiving fields were focused on the need for more technical resources for caregivers, most community co-designers noted that services and resources tended to not respond to cultural differences, often required some level of resource, and often were not worth the effort required to navigate them. What they were asking for was space and flexibility to directly provide care for those they were caring for. The challenge with system-level challenges is that it can be very difficult to understand the scope and scale of the issues and even more difficult in understanding what could be done to address them. We learned that an individual’s lived experiences are a great way to humanize and simplify issues that can otherwise be overly complex and abstract; and offer pathways to understanding key system points or levers of greatest potential impact.
Overly-formal Approach early in the Project
Leading into this project we assumed that every community we worked with would need to have a grasp of HCD theory and practice. It became evident quite early in the process that attempting to ground communities in HCD not only required a significant time investment, but it also tended to confuse individuals more than it benefited them (especially for communities where English may be a second language, or they did not speak English at all). While an understanding of how and why we are doing this work is important, understanding the underlying problem-solving framework was much less important to community members. This approach tended to come across as too academic and too much like the project team was trying to “teach” the community rather than the other way around, and had potential to erode trust and relationship-building that was critical to the work. Additionally, we found that each community had very different experiences and perspectives on sandwich caregiving. This helped us realize that we were not as close to solution building as we thought we were when we started, and that we needed to maintain a focus on problem framing.
Leading into this project we assumed that every community we worked with would need to have a grasp of HCD theory and practice. It became evident quite early in the process that attempting to ground communities in HCD not only required a significant time investment, but it also tended to confuse individuals more than it benefited them (especially for communities where English may be a second language, or they did not speak English at all). While an understanding of how and why we are doing this work is important, understanding the underlying problem-solving framework was much less important to community members. This approach tended to come across as too academic and too much like the project team was trying to “teach” the community rather than the other way around, and had potential to erode trust and relationship-building that was critical to the work. Additionally, we found that each community had very different experiences and perspectives on sandwich caregiving. This helped us realize that we were not as close to solution building as we thought we were when we started, and that we needed to maintain a focus on problem framing.
Reflections on the community innovation process
The core objective of this effort was not to come up with a singular solution but ask, “What could the community's lived experiences tell us about the current state of sandwich caregiving, and how can we offer a different, more human-centered and equitable call to action?”
To start with community experiences, values and hopes, both collaboration and inclusiveness were non-negotiable. However, a more accurate term for how we have approached our work is “radical collaboration,” which recognizes the importance of collaborating with a heterogenous set of stakeholders. This approach is not only more equitable, it is foundational to fostering new insights and creativity. In co-designing with a diverse set of stakeholders, we were forced to test preconceived assumptions about what sandwich caregiving is and how it is being experienced on a daily basis. The intent was not to debate one another or arrive at a singular idea or solution; instead, we held the tension between differing perspectives and experiences which helped us avoid degenerative “group think.” This allowed us to explore a divergent set of ideas before pursuing more inclusive and generative options.
To start with community experiences, values and hopes, both collaboration and inclusiveness were non-negotiable. However, a more accurate term for how we have approached our work is “radical collaboration,” which recognizes the importance of collaborating with a heterogenous set of stakeholders. This approach is not only more equitable, it is foundational to fostering new insights and creativity. In co-designing with a diverse set of stakeholders, we were forced to test preconceived assumptions about what sandwich caregiving is and how it is being experienced on a daily basis. The intent was not to debate one another or arrive at a singular idea or solution; instead, we held the tension between differing perspectives and experiences which helped us avoid degenerative “group think.” This allowed us to explore a divergent set of ideas before pursuing more inclusive and generative options.
Progress toward an innovation
Rather than a set of resources or services that were not accessible or were overly-burdensome to navigate, we found that sandwich caregivers were looking for flexible support (space, time and policies) that allow them to provide the most appropriate, cost effective and desired care for those needing it. As a result, the team developed an open source “action guide” for navigating sandwich caregiving challenges at the individual, local and regional scale. The guide offers practical opportunities for policy makers, service providers, employers, communities, and families to deliver policies and practices that address the system-level challenges of sandwich caregiving. The guide is formatted as a wayfinding toolkit that adapts to the conditions and unique opportunities, and leverages the existing assets of each region, organization and community, now and into the future. Finally, in addition to the action guide, the community co-design process practiced and refined during this project period is currently being replicated (by our project partner and Human Centered Design facilitator, Jess Roberts) on a variety of state-wide projects ranging from senior housing to childcare support.
What's next?
Citizens League will be exploring ways to share the guide with project partners, community based organizations, community members, employers, and public stakeholders with the goal that partners will pilot the action guide. Additionally, we will be sharing the action guide directly with Robbin Frazier, Associate Director of Equity and Community Engagement, University of Minnesota Center for Healthy Aging and Innovation. Robbin and her team have expressed interest in sharing the findings outlined in the action guide as well as employing the HCD approach used throughout this project.
If you could do it all over again...
A key piece of advice we would give ourselves would be to be flexible and plan for things taking more time than you think you need. We knew that leveraging and building trusted relationships would be critical to this work, but we underestimated how long it could take to identify those key relationships and make sure we build some rapport with communities before “diving” into project logistics. To facilitate community engagement well, we realized that we work on the community’s schedule and at the pace they are comfortable with. Additionally, while some community partners were ready to investigate their current sandwich caregiving experiences further and even develop solutions, others where far earlier in their thinking and simply wanted to start a conversation in their community with as many different people as possible (caregivers, those receiving care, children of caregivers, those in professional caregiving roles etc.). It is clear that if we had stuck to a rigid approach or schedule, we would have 1) eroded trust with communities and 2) missed many of the unique insights we were able to capture in this project.
One last thought
One of the more challenging aspects of this project was the unexpected disruptions that COVID caused (and still is causing). One of our key objectives for 2020 was to work closely with 2-3 employers to find ways that our research could be translated into policy that would support employees, specifically those that tend to lack the flexibility and support afforded by senior leadership. One concept we were looking to pursue was to find ways that employers might develop a “substitute” employee model similar to that used by school districts across the country. Our hope is that we might find future opportunities to collaborate with large employers to pursue some of the guidance outlined in our sandwich caregiving guide, especially since COVID has only exacerbated caregiving and workforce issues, especially for BIPOC communities and women.