Our Scholars’ stories: Gazaway empowers high-risk CKD patients with ownership of medical journey

Our Scholars’ stories: Gazaway empowers high-risk CKD patients with ownership of medical journey

Shena Gazaway, Ph.D., assistant professor in the Department of Family, Community and Health Systems in the UAB School of Nursing, explores how to empower high-risk chronic kidney disease (CKD) patients and their caregivers in healthcare settings through her project “Impart multi.”

The project goal is to engage with high-risk patients and their caregivers who progress through kidney disease at a greater rate because of risk factors such as uncontrolled blood pressure and diabetes, says Gazaway.

Black/African Americans with chronic kidney disease and uncontrolled high blood pressure or diabetes face a higher risk of developing severe cardiovascular disease and their kidney disease getting worse more quickly than other racial demographics.

Many factors contribute to this risk, such as socioeconomic barriers. Gazaway’s study specifically focuses on the barrier of access to supportive, informative resources. Healthy outcomes require two-way quality communication between medical teams and the patient or caregiver.

Gazaway says all her work, which has historically focused on end-of-life decision-making, is guided by a group of community advisory members: two who are living with chronic kidney disease, two who are care partners of someone with chronic kidney disease, and one who has experience as a social worker in a dialysis clinic.

While their work has previously focused on end-of-life decision-making, Gazaway says the team expressed passionate interest in taking that concept upstream and finding ways to equip patients and caregivers earlier in the disease timeline. Because of Forge AHEAD Center’s funding mechanism, they can explore this new path with the same concept of decision-making.

Gazaway’s why

As a caregiver to her grandmother-in-law who later died from CKD, this work is deeply personal. “We grew up in a rural setting,” she says, where access was limited.

“Even though we are not in a rural setting in this study, patient activation and conversation are important. Patients and families need to be the drivers of conversation. Patients who are minoritized are often not the drivers of their clinical conversation,” Gazaway says.

“You are the owner of your medical journey. You are the owner of your healthcare experience. I don’t think our health care system does a good job of reminding people of that,” she states.

Her work seeks to change the way many Black/African American communities experience health and healthcare.

Encouraging ownership over medical journey

“Impart multi” consists of education sessions with patients on communication, social support usefulness, or a combination of both. The team wants to understand how educational sessions empowering patients and caregivers can impact decision-making and how patients or caregivers receive support from their medical team.

To teach this personal empowerment, the project focuses primarily on coaching patients and caregivers on how to ask questions. Correspondingly, patients and caregivers learn tactics of how to advocate for themselves in the medical and healthcare setting.

“I want people to know they have permission to ask questions. In some of our pilot work with end-of-life or serious illness, we see people forgetting—when they are in the medical space—that they have the permission to ask questions.”

Educational sessions are delivered to 32 Black/African American adults with stage 3 or 4 high-risk CKD by a lay coach navigator through telehealth or telephone, directly “in the community in people’s homes.”

“We are teaching coping activation, education, and decision-support skills designed to help patients enter an appointment empowered, to talk about what they need and to get the resources they need…We want to enhance communication and the ability to self-manage and enhance self-advocacy at the medical appointment.”

Building momentum

Gazaway says her team plans to share results scientifically and in the community.
She envisions giving patients a one-pager with must-ask questions that help them feel they deserve quality care and will empower them.

Ultimately, the foremost goal is to learn what components of this intervention have the most impact. After the study concludes, Gazaway says they hope to take the most active components to apply for more funding.