UC researcher dedicated to improving care for family caregivers

By: Katie Coburn

Tamilyn Bakas, PhD, RN, FAAN, believes family caregivers of stroke survivors are the hidden patients in the U.S. health care system. Once a stroke survivor is discharged, it becomes a family member’s responsibility to care for them, often leading this family member to experience increased stress and make poor diet and exercise choices, which can cause serious health issues. A lack of clinical follow up and resources to support the family caregiver on this journey can even lead to institutionalization for the stroke survivor.

"Stroke is a sudden event. Everything is fine and then all of a sudden a person has a stroke, usually followed by impairments to deal with," Bakas says. "Family members will typically immerse themselves in the care of the survivor and forget to take care of themselves."

Bakas, professor, Jane E. Procter Endowed Chair and interim associate dean for research in UC's College of Nursing, has dedicated 25-plus years of research to improving the quality of life of family caregivers of stroke survivors. Now, she is one step closer to providing life-changing, low-cost resources for this hidden patient population, thanks to a $2.9 million R01 grant from the National Institute of Nursing Research, part of the National Institutes of Health (NIH). The research award, which Bakas received in April, will support a large randomized controlled clinical trial of her Telehealth Assessment and Skill Building Kit (TASK III), an intervention program designed to support and improve the health of family caregivers as they provide care for stroke survivors.

"Our main goal is to eventually translate this program into stroke systems of care across the country so that all family caregivers have follow up after discharge to the home setting, because right now they’re pretty much on their own," says Bakas, who, along with conducting her own research, mentors students and junior faculty in developing dissertations and establishing research programs.

Bakas developed the first iteration of the intervention program in 2004 as an eight-week educational program that equipped caregivers with a resource guide and tips on problem solving, stress management and other areas of concern. The caregiver learned how to use the mailed guide in weekly phone calls with a nurse. With the support of several research grants, the program has evolved to include a goal-setting tip sheet to help caregivers better manage and improve their health. The resource guide can now be accessed online in the form of an eBook and interactive website (task3web.com), as well as a mailed hard copy and USB drive. Caregivers can also choose how they prefer to interact with nurses, whether by phone, FaceTime or online videoconferencing.

“A lot of people have access to the internet and are very tech-savvy, but a lot of underserved populations do not have that benefit, which creates a digital divide,” Bakas says. “We want to meet caregivers where they are based on their skill levels and the forms of technology they’d like to use to access our materials.”

In 2018, the NINRS-funded feasibility study of the TASK III program, led by Bakas and her team, included 74 stroke caregivers. Results showed the program reduced caregivers’ depressive symptoms and improved their perceptions of their health. Now, Bakas’ team is charged with generating evidence that the program is efficacious and can make a difference in a larger sample. Over the next four years, Bakas and her team will enroll about 300 caregivers into the program and collect data, before spending the final year analyzing and publishing their findings. Once evidence for TASK III is generated, Bakas plans to apply for implementation grants to discover how hospitals can best adopt the program into practice.

“We are excited for Dr. Bakas to receive this prestigious R01 grant award. Her award reflects the steady increase in annual extramural funding from $807,000 to $3.9 million through the last 10 years. I’m proud of Dr. Bakas’ program of research focused on the needs of caregivers and excited about the future outcomes of her research,” says Gordon Gillespie, PhD, DNP, RN, FAAN, the college’s interim dean and former associate dean for research.

Bakas is confident the TASK III program is going to make a big difference in the lives of family caregivers.

“After all these years of work, having the NIH dollars to create and implement something that is important for families across the nation means a lot to me, to our research team and, most importantly, to the clinicians who treat stroke survivors,” she says. “I’m just so grateful to be able to have this opportunity to make an impact on the lives of these families.”

Note: This research was supported by the National Institute of Nursing Research of the National Institutes of Health under Award Numbers R21NR016992 and R01NR020184.

Featured image at top: Tamilyn Bakas, PhD, RN, FAAN, professor, Jane E. Procter Endowed Chair and Interim Associate Dean for Research for UC College of Nursing. Photo/Colleen Kelly/UC Creative + Brand