Research News

Larson developing program to support wellness for caregivers of children with autism

March 21, 2016

According to the Centers for Disease Control, about 1 in 68 children in the United States have been identified with autism spectrum disorder (ASD), a group of developmental disabilities that can cause significant social, communication and behavioral challenges.

Research indicates that caregivers of autistic children, who often face a lack of support and a range of daily obstacles, are the most stressed among those who care for kids with disabilities. UW-Madison’s Elizabeth Larson explains how her early research on this topic was an eye-opening experience that gave her a better understanding of these parents’ lives. During interviews, caregivers described to Larson the intense vigilance and 24-hour, seven-days-per-week nature of their caregiving.

Beth Larson
Larson
“They talked about getting up in the middle of the night to assure their awakened child did not get into unsafe situations, keeping an eye out at all times to quickly intervene and avoid meltdowns, or making plans just so they could take a shower and be sure their child was safely occupied,” says Larson, an award-winning associate professor of occupational therapy with the School of Education’s Department of Kinesiology. “These interviews helped me to understand the scope of the problem. I realized now we needed to do something about it.”

In an effort to help these caregivers improve their wellbeing, Larson and her research teams have developed a program, “5Minutes4Myself (5M4M),” that includes interactive coaching and a smartphone-based app that provides mindfulness podcasts, goal tracking and other habit-building features. Larson worked closely with caregiving parents and with Branch2, a Madison-based startup, to design the app to fit the lifestyles of those engaged in time-intense caregiving.

“There’s a lot of limitations in caregivers’ daily routines that can make life difficult,” says Larson.  “We wanted an intervention that was portable, that the caregiver can take anywhere and do at any time.”

Larson, who brings to the table more than three decades of clinical and research experience working with children with disabilities and their families, explains that the app is rooted in scientific evidence and based on years of research and working with caregivers in the field.

Using motivational interviewing to support behavior change in daily life, coaches work with caregivers to identify goals, make practical plans, and build new habits. The app supports lifestyle change and delivers a brief mindfulness program, including educational content and practices.  

To build sustainable life changes, each participant’s unique goals are tracked and customized reminders are provided. As requested by parents, weekly check-ins are “guilt-free,” allowing one to opt out of reporting in any given week. Successes are highlighted via the app in the form of reward badges that provide user reinforcement when goals are met. A dashboard view of an individual’s progress is available to coaches and helps inform ongoing interaction and guidance with participants.

5M4M appThe initial design of the app was piloted with a cohort of caregivers and then refined based on user feedback.  Assessing the app usability, user engagement and outcome measures of health are part of an ongoing research study. This current research is funded by the American Occupational Therapy Foundation; earlier development of the project was supported via the UW-Madison School of Education’s Virginia Horne Henry Fund.

A key feature of the current project is the addition of the mindfulness modules, which were requested by earlier participants.

“We’re trying to give caregivers some very simple experiences that let them be more attentive to the moment, that let them have a relaxation response, that let them get into the state where they’re more able and receptive to manage the demands they have,” says Larson. “Mindfulness does not suggest that your life is going to change, but it’s about accepting your life as it is and seeing it for what it is rather than attaching a lot of emotions to a situation.”

The app, as part of the program, will be refined and further developed.

“We hope to continue to develop our hybrid coaching/app-supported ‘5Minutes4Myself’ program to promote wellness for caregivers and maybe others,” says Larson. “While some people may be successful at life change on their own, most of us need support to make sustainable wellness changes.”

The research project is continuing and is enrolling participants for its next group in early April. For more information individuals may contact Larson via email at Elizabeth.larson@wisc.edu or 5m4m@education.wisc.edu.

Adds Larson: “It is possible that our app will be available separate from our coaching program in the future. Given its unique features, especially micro-intervention podcasts of five to 20 minutes, I can see how people would find it a practical alternative to more intensive mindfulness programs.”