Citizens League
Report date
September 2019
What has been most instrumental to your progress?
To gain insights into a community’s experience, especially those often invisible in traditional community engagement, requires a level of trust and relationship that would take far more than the duration of this grant to establish. As such, we leveraged relationships that our grant partners and organizations have built with various communities across the twin cities over years and even decades. The principles of Human Centered Design utilized in this project requires the ability to get beyond qualitative information that can be gathered in generic ways, such as surveys, to the deeper meaning and values that communities derive through their lived experiences. To do so only happens with deep trust and relationship-building which was intentionally built into our approach. Our approach is co-facilitated by community partners and longitudinal (multiple gatherings over time vs. a one-time community gathering) and allowed for community members to become familiar and comfortable with one another and the content of this project in the practices and at a pace they were most comfortable.
We knew going into this project that the definitions and challenges of “sandwich caregiving” were ill-defined at best. Our approach focused on iteratively exploring and learning with our communities over time which allowed us to build a deep understanding of sandwich caregiving at the community-level. Prior to each gathering, community participants (who were compensated for their time and expertise) received reflection questions before attending an in-person meeting. At these meetings or “studios” the community participants and project team members come together to consider input and insights generated during their initial exploration and generate questions to explore and/or ideas to test in preparation for the next in-person session, and so on. In this project, we would hear things like, “I wish I would have asked…,” or “I wish I would have said…” In this iterative approach we were able to incorporate these questions moving forward within and across communities. In this way, the community directs our approach and the content generated for better understanding the sandwich caregiving ecosystem as it actually exists, not how we think it exists.
Even with the best of intentions, an expert driven model, where the “usual suspects” drive the process, can often fail to realize the lived experiences and values of a community most impacted by a problem. We found value in an “outside-in” approach that ensures we are not only developing useful solutions, but even more importantly, are framing the challenges that matter most to the community. We have found in this project that while the experts often talk about resources and programs, communities talk about meaning, purpose and agency, all of which are difficult to respond to if you are only focused on providing technical resources or programs. By starting with diverse and often overlooked communities, we have found unique insights that we, or a group of experts would have never been able to predict even with an unlimited amount of resources and time. Starting from the “outside-in” is not only a source of new insights, it is a far more 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
Leading into this project we assumed that every community we worked with would need to have a grasp of Human Centered Design (HCD) theory and practice. It became evident quite early in the process that attempting to ground communities in HCD, not only required a relatively significant time investment, it 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, which had the potential to erode the trust and relationship-building we outlined as important in this work. Additionally, we found that each community had very different experiences and perspectives on sandwich caregiving and realized 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.
As outlined in our progress response, we looked to connect with those community voices that are not typically part of this type of work and found that to be even more difficult than we had anticipated. Communities, especially those filling caregiving roles are very busy and often physically, cognitively and spiritually exhausted. Even though we compensated for individual’s time and met at times and locations of their most convenience, it takes a lot of time and flexibility to embed and engage fully with community; much more than we had anticipated. For example, we would be working with a community for several months to schedule some time to meet and within a week we would have two sessions scheduled for a Saturday afternoon. While we attempted different approaches for working with community partners, each community had different cultural norms for communication and responding and in some cases had religious holidays that didn’t allow for scheduling. While this is not a failure, we feel we could have started this planning earlier in the process and realize now that we need to be available to jump into action to coordinate and help facilitate these sessions at a moment’s notice.
Reflections on inclusive, collaborative or resourceful problem-solving
If doing this work well, it is difficult to separate these elements, but “collaborative” is foundational. A more accurate term for how we have approached our work is “radical collaboration” which recognizes the importance of engaging a heterogenous set of stakeholders (beyond the usual suspects), as it is not only more equitable, it is foundational to fostering new insights and creativity. By co-creating with a diverse set of stakeholders we were forced to test our preconceived assumptions about what sandwich caregiving is and how it is being experienced. The intent was not to debate one another or arrive at a singular idea or solution, instead to hold the tension between differing perspectives and experiences which helped us avoid degenerative “group think” and to explore a divergent set of ideas before too quickly settling on one or another. This approach surfaced key underlying issues and, as Roger Martin, a leading proponent of Human Centered Design writes, has allowed for us to deploy an approach that “generates creative (framing) and resolution of tensions in the form of new ideas that contains elements of opposing ideas (and experiences) that is superior to each.”
Other key elements of Community Innovation
One of the elements that has allowed us to uncover new thinking and unique caregiving experiences is humility or understanding that we cannot know what is outside of our own experiences. Inclusivity is central to any meaningful community innovation, yet without humility or genuine curiosity to learn from other’s experiences, 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 process for shared exploration and decision making with communities, we have been able to resist the temptation of pursuing what seemed to be the evident (expert perspective) high tech solutions of the moment. This focus on humility also ensured that findings would be guided by those from within and familiar with the community, its culture and its history. Because the power and privilege of those making decisions (policies, programs) is often invisible to those making the decisions, we feel that humility, and the ability to share that power and privilege is essential if we ever hope to truly address the systemic disparities that exist in our local, state and federal caregiving systems.
Understanding the problem
Our co-explorations with several communities to date has resulted in the development of promising opportunities for further refinement and development:
The vast majority of community participants do not use the term “caregiver” and some even find it disrespectful. This insight suggests that most individuals do not self-identify as “caregiver” in the way health systems, nonprofits and policy makers talk about, and support, caregiving might need to better align.
Most community participants did not identify a need for technical resources or services, instead they request the opportunity to directly provide the most appropriate care at the most appropriate times and locations for their loved ones. This insight suggests a need for more flexible and supportive employment opportunities/environments and formal caregiving employment opportunities (such as in-home caregivers) that provide meaningful benefits and a living wage.
Many discussed that caregiving occurs in groups or units of care, rarely in isolation. Yet most noted that resources and services are targeted at the individual-level. This insight suggests the need to develop policies at the family and community level.
The vast majority of community participants do not use the term “caregiver” and some even find it disrespectful. This insight suggests that most individuals do not self-identify as “caregiver” in the way health systems, nonprofits and policy makers talk about, and support, caregiving might need to better align.
Most community participants did not identify a need for technical resources or services, instead they request the opportunity to directly provide the most appropriate care at the most appropriate times and locations for their loved ones. This insight suggests a need for more flexible and supportive employment opportunities/environments and formal caregiving employment opportunities (such as in-home caregivers) that provide meaningful benefits and a living wage.
Many discussed that caregiving occurs in groups or units of care, rarely in isolation. Yet most noted that resources and services are targeted at the individual-level. This insight suggests the need to develop policies at the family and community level.
If you could do it all over again...
We would have advised ourselves would be to not over-plan and be even more flexible than you think you need to be. This is especially important partnering with communities that have not been part of similar efforts in the past (precisely the communities we should be working with). For example, we had to pivot very early on how we were grounding each of our partnering communities to the project and the Human Centered Design (HCD) framework. After our first community gathering it became clear that attempting to outline the framework took up time and could even become a distraction for our community partners. 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 plan, we would have 1) eroded trust with communities and 2) missed many of the unique insights we have generated to date.