Youth who help care for their loved ones with ALS are learning about important areas of ALS care – from physical therapy, occupational therapy, and speech therapy, to social work and neurology -- through YCare, an education and support program developed and directed by Dr. Melinda S. Kavanaugh, Assistant Professor of Social Work with the Helen Bader School of Social Welfare at the University of Wisconsin-Milwaukee.
Data from the National ALS Family Study, conducted by Dr. Kavanaugh, showed that nearly 60 percent of youth providing care to loved ones have little training or guidance. Using this data, a pilot caregiving skills and support protocol was created by Dr. Kavanaugh, in collaboration with The ALS Association Wisconsin chapter and the certified multidisciplinary clinic at Froedtert Hospital in Milwaukee, Wisc.
The youth caregiving needs and tasks identified in the national study were used as the basis for the three modules (i.e. basic care, speech/communication, and assistive devices) in the skills training protocol. ALS clinical experts and therapists receive training in young caregivers, youth education, and teach-back methods, in combination with their clinical expertise, to provide youth training in each skill.
The YCare program integrates skills-building with supportive discussions and peer engagement, allowing youth to explore tasks and build confidence and self-efficacy alongside other youth. Using funding from The ALS Association, Dr. Kavanaugh further tested the YCare protocol with The ALS Association Rocky Mountain chapter, refining the model and building collaborations across ALS clinics and chapters.
“Caregiving is critical to the well-being of people living with ALS, and caregivers need support and education to do and feel their best,” says Kavanaugh. “Young people are actively involved as caregivers for their family members – feeding, bathing, and dressing; using complicated assistive devices; and ensuring safety. Yet, youth receive very little training or guidance on the care they’re providing, often causing them to feel anxious, scared, and confused – and importantly, socially isolated from their peers.”
“Young caregivers should not only feel confident in the care they’re providing, but also know how to manage their feelings about providing that care alongside other ‘like’ youth,” explains Kavanaugh. “So, this training was designed to give youth valuable skills, as well as a support network of other youth caregivers and ALS professionals.”
In addition to developing the YCare program with The ALS Association Wisconsin Chapter, Dr. Kavanaugh conducted the first Wisconsin Youth Day in conjunction with the Annual Research Symposium in 2016. She has presented results of the National ALS Family Study at numerous state, national, and international conferences.
Dr. Kavanaugh worked with The ALS Association and numerous families to create the only ALS family resource guide in the U.S., and is currently creating three forthcoming youth resource guides, including a graphic novel about ALS for young children; a choose-your-own-adventure novel for youth; and a supportive guide for young adults dealing with ALS in the family as they transition to early adulthood.
“While funding for the person living with ALS is critical, so is funding for the family,” adds Kavanaugh. “The ALS Association is integral in funding research and programs for young caregivers and highlighting how both can directly impact the long-term well-being for youth within a family. Our unique research tests care and support models for youth who, when educated and trained, will be more confident and supported caregivers for loved ones with ALS.”