The following conversation takes place between Dr. Vanessa Robinson-Dooley, Associate Professor at Simmons University's School of Social Work, and Taylor Eubanks, graduate student in the Gender and Cultural Studies program. Dr. Robinson-Dooley talks through the development and application of the self-management program "Healthy Together."
What are you currently working on?
Vanessa Robinson-Dooley: Right now I'm working on a grant from the National Institute of Aging, which is part of the National Institute of Health (NIH), along with my colleagues from my former university (Kennesaw State University) in Georgia: Drs. Evelina Sterling, Carol Collard, and Dr. Tyler Collette. Our program is called "Healthy Together" and it is a self management program for African American men, especially those who are under-resourced.
My research interest is in the self management of chronic disease at the intersection of mental health for African American men. We conducted a pilot program in Atlanta using what is considered the "gold standard" of self management programs: working with individuals, they come to a class and receive training to help them learn about and manage their illness—in addition to medical advice, not in lieu of.
The "gold standard" program we used at the start of our project is one of the few programs out there designed for this type of work. It is the one everybody uses and it has been around forever. The pilot ended about as we expected it to, but we couldn't assume that outcome of course. We needed to collect the data and relaunch the program. Because we wanted to make sure the information we learned from the pilot could be repeated. We found the "gold standard" program was not conducive to African American men, especially those living in under-resourced areas—it was ineffective. The program as it had been conceived and implemented was missing something, so it wasn't helping the men we were working with.
What was missing from the "gold standard" program?
VRD: To find out what was missing, we talked to the participants themselves. At the end of each class, we conducted a focus group and asked the men directly what they thought. And the "missing things" would fall under cultural aspects: culture in the broadest sense, but also the specific culture of African American men and their experiences.
"We realized that these huge assumptions reflected disconnects with the experiences of folks who may be living in under-resourced situations and the program, which was meant to help them, wasn't helping."
One "missing thing" was access to fresh food. During one of the weeks in the six week pilot program, the homework for the men asked them to walk to the store—and that is a problem right there—and buy some fresh fruit. But some of the men didn't have grocery stores within walking distance. They might only have access to corner stores that cater to downtown businesses, more like a drug store. A drug store is not a place that generally stocks an array of fresh fruit, so those men couldn't complete the assignment.
A food desert, which we usually think of in rural places, exists in urban areas too. I can drive away from my house and go to a farmers market to get fresh fruit and vegetables. I have multiple large grocery stores in my area, but not everyone has access to that kind of option.
We realized that these huge assumptions reflected disconnects with the experiences of folks who may be living in under-resourced situations and the program, which was meant to help them, wasn't helping. So we're really trying to make something that, even though it isn't perfect, can start to fill a gap in Black men's health.
How did you and your colleagues respond to the realization that the pilot program was actually unhelpful?
VRD: We started by creating focus groups to find out what would be helpful. We asked the participants, "How do you think about your health and what would help you improve your health?" We did not approach this as an expert on Black men's health. We approached it as someone interested in Black men's health who wanted the men to tell me about Black men's health. It is very important that we let people be their own expert on their experience and we did that in a culturally humble way.
We then invited their partners, wives, sisters, friends—anybody who has a Black male in their life— and asked "How do you think you can support Black men and their health, especially when they're dealing with multiple chronic illnesses and possibly mental health issues?"
Lastly, we conducted a focus group with medical practitioners. We targeted clinics who serve under-resourced populations of Black males and we asked them, "How can a program like what we're thinking better serve this population?" and they gave us some really great feedback. We took all of that data and designed the curriculum for "Healthy Together."
"It is very important that we let people be their own expert on their experience and we did that in a culturally humble way."
You mentioned a culturally flexible "Healthy Together" program. What does that mean for this new pilot program curriculum?
VRD: We envisioned creating something similar to a menu, where people can take parts of the program and utilize it for their population, or they can use the whole program as designed.
One of the most important ways to offer a flexible curriculum is to make it adjustable. The former "gold standard" is copyrighted so it can't be changed or adjusted. You have to use the wording, just as it is; you have to use all the forms, just as they are; no changing of the curriculum, you have to administer it exactly like it is.
We want to do the opposite of the "gold standard" and provide a menu, or template. Where we suggest some best practices that we've learned can help people self manage around chronic illness and help caregivers support them in the self management process. Maybe our section on stress and emotional impact on health is more or less important for your population, you can adjust or add to the curriculum.
The other aspect to cultural flexibility that was very important to us is making the curriculum free and available to the general public. So while it will be copyrighted with our names, because we wrote it, it will be free to download for anyone who wants to implement "Healthy Together."
What makes "Healthy Together" important?
VRD: I think it is important because I am the daughter of the greatest Black man to ever live. My dad's name was James Robinson and all my life he was a police officer. I saw him in uniform everyday when I was young, and then he became a detective.
"This research project is a part of my scholarly work, but it's also my life's work."
When my sister and I graduated high school he went to work undercover for the DEA. After he finally retired, he went back to work. He was working for the Federal Investigative Services (OPM) when he suddenly died. A blood clot traveled to his heart and because he had a protein deficiency, that was a result of another medical issue—that he probably knew he had that he didn't tell us about—he died.
I'm married to a great Black man who doesn't like going to the doctor. I'm the mother of three beautiful Black sons and I want them to be mindful of their health and be able to deal with whatever is coming in the world we live in right now. So I'm very interested in Black men's health because Black men's health is important to me.
This research project is a part of my scholarly work, and my life's work because it's so intertwined with my life. It isn't something separate from who I am: I'm a wife, mother, and daughter to Black men so it's a part of me. I'm passionate about this work.