By Dr. Melinda S. Kavanaugh, Associate Professor of Social Work, Helen Bader School of Social Welfare, University of Wisconsin-Milwaukee

“It was nice to connect with other people and it made me feel less alone.” (YCare training participant)

For many children and young adults in families with ALS, this is a common refrain; they feel alone and isolated from their peers, especially if they are involved in caring for their loved ones. These young caregivers often help with care tasks, yet have little training or guidance in how to do the specific tasks.

With this in mind, my colleagues and I conducted a study of youth and families in ALS that was funded by The ALS Association. Over 60 percent of respondents said they had no training, despite being involved in care tasks ranging from bathing and feeding family members, to transferring and using complicated assistive devices.

In addition to the data on whether youth received training, I asked how they knew what to do. Responses ranged from “winging it” to “using common sense.” As evidenced in the introduction quote, not only are youth minimally trained, but they have also little social support from peers.

Caregiving is critical to the well-being of people living with ALS, and caregivers need support and education to do and feel their best. 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.

Addressing the role youth play in caregiving and the need to engage with “like” peers, I developed a research protocol to provide skills and support to young people in families with ALS.

When caregivers are trained and have skills and confidence, the care they provide is better. With no models of youth caregivers training, my research team and I worked closely with The ALS Association and several chapters to develop a youth caregiving model called YCare and tested it in several locations.

“I learned how to better take care of a person afflicted with it.” (YCare training participant)

YCare consists of a multidisciplinary protocol involving therapists across the spectrum, including physical therapy, occupational therapy, speech-language pathology, and social work. Each therapist receives training in youth development and learning styles, along with the training day protocol.

Each professional receives a training manual and guide, developed for ALS and youth. The guides were developed from several tests of the model and are adapted and modified after each test from therapist feedback and surveys with the youth.

The YCare model is made up of four modules:

1) basic care
2) speech/communication
3) assistive devices
4) peer support

Young people rotate through the modules in peer groups, allowing them to learn alongside peers, building social support and reducing isolation.

“I learned that it will be hard at times, but now I can make it work.” (YCare training participant)

Since inception, the YCare model has been administered with several chapters of The ALS Association. The latest training program took place in Washington, D.C., during the 2018 National ALS Advocacy Conference. A total of 15 youth, males and females, participated in the day-long training. Ages ranged from 9 to 20.

Participants completed pre- and post-surveys, providing data on care tasks, training, social support, and knowledge about ALS. Additionally, a critical aspect of the project is to assess confidence in care tasks and how the training may improve that confidence. We are happy that outcomes from the D.C. training highlight improvement in knowledge about ALS, increased social support, and confidence in care tasks.

“I learned that you need to manage your time when caregiving.” (YCare training participant)

One of the goals of the YCare protocol is to help young caregivers identify ways they can take care of themselves while being a caregiver, student, friend, etc. This balance is difficult for adults. But would youth be able to identify strategies or goals for self-management? It turns out, they can.

Qualitative data highlight the many ways in which young caregivers state they can set goals and participate in specific behaviors to meet those goals. This aspect is critical for young people as they leave the training and apply what they learned in their everyday life.

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. So, this training was designed to give youth valuable skills, as well as a support network of other youth caregivers and ALS professionals.

Parents Need Guidance, Too

Many families are dealing with an initial diagnosis or a quick progression. That leaves many parents unsure what to say to their children. Parents also have mixed feelings about the care their kids provide and are struggling to know how to support them.

During the course of the YCare day, many parents stopped by and watched their kids. They let us know how impactful the training was to their family.

As a way to support parents, I worked with The ALS Association to write a family guide to ALS. The guide uses data from the national family study and is guided by my clinical expertise in neurological disorders.

In addition to developing the YCare program with The ALS Association Wisconsin Chapter, I am creating additional resources for youth, based on research interviews with children and youth in families with ALS. The resources include a graphic novel about ALS for young children, an interactive novel for older kids and teens, 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. 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.