Hand in hand: NAU researcher develops relationship-building program for stroke survivors, caregivers

Michael McCarthy et al

May 1, 2019

Every 40 seconds, someone in the U.S. has a stroke, according to the Centers for Disease Control and Prevention. This trauma takes most victims by surprise, and if they survive, their lives can be permanently changed. After hospitalization, most survivors return home, where loved ones care for them. The entire household can experience tremendous stress, and relationships can fray.

Stroke researchers usually focus on survivors and the challenges they face, only occasionally including the caregivers; few explore the health of relationships between survivors and caregivers. To address this deficiency, the American Heart Association awarded Michael McCarthy, associate professor in NAU’s College of Social and Behavioral Sciences, a $154,000 grant to design a program to help stroke survivors and their primary caregivers strengthen and maintain healthy bonds.

Depression can compound problems

Studies show stroke survivors and their caregivers are three times more likely to experience depression than the general population. Because depression can lead to additional health complications, addressing it and other stressors can positively influence the well-being of both parties.

“The impact stroke has on caregivers is enormous and shouldn’t be minimized,” McCarthy said. “Depression among stroke survivors is common, but it’s even more prevalent among caregivers. The program we’re developing aims to support the relationship between survivor and caregiver. Both people are in it together, and neither will do well if one is struggling or if the relationship is strained.”

Survivors and caregivers have a say

A multidisciplinary team is providing expertise from a range of specialties. Dorothy Dunn, associate professor in NAU’s School of Nursing, and Yolanda Garcia, associate professor in NAU’s Department of Educational Psychology, are co-investigators. Tamilyn Bakas of the University of Cincinnati is the project mentor; Karen S. Lyons at Oregon Health and Science University and Sarah Whitton, Brett Kissela and Dawn Kleindorfer at the University of Cincinnati round out the collaborators from other institutions. NAU graduate and undergraduate students also are assisting.

The team collected information on coping strategies from previous studies and available literature. But to develop a program to address relationship issues that affect both the survivor and caregiver, McCarthy turned to his target audience.

“In the first phase of the study, we interviewed 19 survivor and caregiver pairs and asked them about their experiences after stroke,” McCarthy said. “We asked them how they were doing and what techniques they’ve tried that have or haven’t worked.”

After compiling and analyzing all the information collected, the team identified 17 common relationship problem areas and came up with tips and strategies for each. Some of those suggestions come from the interview subjects, and some are from existing theory and literature. The result is an interactive program designed to meet a pair’s needs through the media they prefer.

McCarthy sent the final program, called Hand in Hand, to a 10-member expert panel for evaluation. Two stroke survivors, two family caregivers, a neurologist, an occupational therapist, a nurse and three researchers reviewed the program and provided feedback. With refinements completed, McCarthy is now enrolling people to test the program’s effectiveness.

Recruiting stroke survivors and caregivers as study participants

McCarthy is reaching out to stroke support groups in northern Arizona to recruit survivors and their caregivers. While participants need to visit the NAU campus twice for in-person interviews, subsequent interactions can take place via the internet or phone. Participants will receive information and tip sheets according to their concerns and can interact with McCarthy and his team via Zoom, an online interface similar to Skype.

“Often, intervention programs are time-consuming, difficult and costly. We’re trying to alleviate those barriers for stroke survivors and their caregivers. We know they have other demands on their time,” McCarthy said.

McCarthy joined NAU in the fall of 2018. He has helped caregivers and people with chronic illness and disabilities achieve optimal health for 20 years and has published studies on a variety of caregiver health and wellness topics. McCarthy has been working with Garcia and Dunn since he arrived at NAU. The three have overlapping interests in aging, chronic illness and patient-caregiver issues.

Community members interested in participating in the study can contact McCarthy by email or by phone at (928) 523-4237.

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