You listen. You try to anticipate everything. You set everything up just so. You think it all through. And when it’s over, the list of complaints rivals the list of compliments. You take a deep breath, and listen again.
This scenario may sound familiar to anyone who has attempted participatory research, also known as community-engaged research (CEnR) processes. CEnR engages individuals affected by research outcomes in the research process itself through collaboration, resulting in outcomes relevant to their lives. The challenges of the process may be the reason many stay away from it. But the rewards often outweigh the difficulties—the extra effort is worth it.
In both participatory and non-participatory methods, older adults have widely been excluded from research. In particular, many researchers would not dare set foot in the regulatory labyrinth that is a long-term-care skilled nursing community. Amy Eisenstein, PhD of CJE SeniorLife’s Leonard Schanfield Research Institute, wanted to shift that tide.
Bureau of Sages
Amy spearheaded CJE SeniorLife’s Bureau of Sages. The Bureau is made up of stakeholders including six older adults living at CJE’s Lieberman Center for Health and Rehabilitation, five older adults utilizing Virtual Senior Center [VSC link] technology in the community, and top researchers and clinicians working in the fields of aging, disability, and CEnR. The support team also includes a researcher at CJE SeniorLife, Lieberman’s Director of Operations, Lieberman’s Manager of Life Enrichment and Creative Arts Therapy, an art therapist and two volunteers—a PhD candidate in disability studies and a counselor.
Over the course of two years, the Bureau will meet for quarterly retreats at Lieberman, with Virtual Senior Center Members joining through audiovisual technology from their homes. In between retreats, the Bureau stakeholders will carry out projects on their own and in informal meetings wherein they will share their knowledge and learn about patient-centered outcomes research. They will contribute to research projects in CJE and beyond that will have meaningful impact on their lives. Our hope is that the Bureau will serve as a model, encouraging others across the country to partner with the people living in nursing homes and aging at home as active contributors to research processes. This program is funded through the Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Washington PCORI Engagement Award (2640-CJE). Click here to learn more about PCORI.
A Delicate Balance
In March, the Bureau had their first retreat. After introductions, Amy gave a brief overview of PCORI and the idea behind the Bureau of Sages. The group watched two short videos to learn about PCORI. Following a break, the Bureau paired off—one clinician with one older adult—to complete the first phase of the Appreciative Inquiry method of determining ideal health outcomes. For the Appreciative Inquiry exercise, the older adults were asked to share a positive health story—a time when they felt their health was at its best…and/or a time they succeeded in getting attention for a health issue.
Following the retreat, one of the members, Robyn Stone of Leading Age, shared her take on the retreat. I had the chance to sit down with the Lieberman Bureau members to debrief. Their positive feedback focused on the organization and intention of the project, having the chance to speak one-on-one during the Appreciative Inquiry exercise, and the top-notch spread we had for lunch. One of the most touching outcomes was unexpected. A person living at Lieberman who has limited mobility used the Virtual Senior Center technology to participate in the retreat from her room. Through her dialogue with the other Virtual Senior Center participants, she was able to engage in a rare group conversation. She has become close friends with one person in particular, and the two have continued to communicate via phone and email.
The Bureau’s constructive feedback from the retreat reflected unintentional power imbalances: Why didn’t the clinicians talk to the older adults during lunch? Why did the clinicians speak for the older adults when sharing the stories with the large group? Why didn’t the older adults have time to interview the clinicians after the clinicians interviewed them? Why was there so much jargon?
One major sticking point was the Appreciative Inquiry process’ emphasis on positive health stories as a way of generating outcome goals. One Bureau member expressed her frustration with focusing on the positive without acknowledging the negative. She put it this way: “How do you improve things if you don’t cope with what is, with all of its warts and black spots? If you don’t cope with those, you can’t just build an island of joy on a sea of troubles.” She continued, explaining why talking about their lived experience in a nursing home matters: “The issues may sound trivial to you, but these are the entirety of our existence.”
The way we as organizers of the Bureau of Sages project respond to this challenging feedback is a critical moment in the participatory aspect of this process. It’s tempting to become defensive. After all, we have to accomplish what we said we’d do in the grant proposal, and the Appreciative Inquiry process is part of that. We set things up the way we did for a reason, which were intended to keep the older adults’ interests in mind. The concept of fluid expertise (Fletcher, 1999) may be helpful to frame the way we react in this moment. Fluid expertise means that no one is an expert in everything. Hierarchy is irrelevant, as each person at the table has something to offer.
We have asked the older adult Bureau members to participate in this project not only because they have been excluded from research, but because we truly want to hear what they have to say. We believe they are experts on their own lives. This includes their lives in the nursing home, but also the entirety of their lives up until this point. It’s time for us to listen to that feedback again.
We look forward to the next project, when the Bureau members will critique the PCORI videos they watched at the first retreat. We look forward to the next retreat, ready to flip the power imbalance through an improv-based game show, wherein the older adults will hit a buzzer when they hear any jargon word as the clinicians attempt to define research terminology in layperson terms.
In writing this blog post, I hope that sharing this part of our process—warts and all—will inspire others to engage with individuals who are aging, to collaborate with them even when it means revisiting the proverbial drawing board. We have begun to respond by being transparent with the retreat debrief and evaluation feedback as we share it with everyone involved. We are reviewing the individual and group project assignments to incorporate the feedback we’ve heard. We know our intentions are good, but we have to push ourselves to look to the people living the experience of aging to know how to accomplish our goals.
We do hope to reach a relative island of joy someday, where an island of joy means research outcomes meaningful to the quality of life of older adults. But we can’t ignore the sea of troubles. As we dive in, we will need each other to stay afloat.
Fletcher, J. (1999). Disappearing acts: Gender, power, and relational practice at work. Cambridge: MIT Press
Katharine Houpt, MAAT, ATR, LCPC is an artist, art therapist, and counselor who is passionate about using the arts to amplify the voices of people who have been marginalized due to age, disability, institutional living, and other factors impacting identity. Katharine is the Creative Arts Therapist at the Lieberman Center for Health and Rehabilitation. She is also in private practice working with older adults and care partners in their homes, as well as in an artist’s studio in the Rogers Park neighborhood of Chicago (www.HouptArtTherapy.com). Katharine contributes to several programs that infuse the arts into institutional settings to reduce stigma and promote the strengths of people who are aging. Katharine co-authored with community members of Lieberman Center a forthcoming publication in Art Therapy: Journal of the American Art Therapy Association entitled “Anti-Memoir: Creating Alternate Nursing Home Narratives Through Zine Making.” She is a Lecturer at the School of the Art Institute of Chicago where she teaches a course she created, Comics Narratives: Illness, Disability, & Recovery.
Photo credit to Leading Age’s Bureau of Sages webpage.