After five years volunteering for the Alabama Muscular Dystrophy Association (MDA) in various capacities, it was clear to Katherine “Katie” Cassidy that while the organization excelled at serving children with neuromuscular conditions, it lacked a support system to help parents and caregivers deal with the stress, emotional strain, and social isolation that comes with full time caregiving. As an Alabama Schweitzer Fellow, Cassidy is now working with the organization to fill that gap through a program that connects parents and caregivers across the state with each other and with professionals equipped to support the caregiving experience—via the internet and in real life.
“I developed the idea for my project around the idea that the caregivers of children with the neuromuscular conditions are a unique community and could really benefit from being connected to support one another,” said Cassidy. “I have helped these caregivers connect online, so many have been able to reach out through the online community and find members that live physically close to where they are located.”
Cassidy recently hosted the program’s first in-person social event for parents who live in the Birmingham area—with an assist from fellow Alabama Fellow Catherine Jones, who offered an art lesson to participants. (Jones is drawing on her artistic abilities for her own Schweitzer project, establishing arts and crafts and art therapy programs for residents of a local rehabilitation and retirement facility.)
“It was a nice opportunity for many of the parents that have met online to further their connection by meeting in person,” said Cassidy.
Cassidy, a graduate student at the University of Alabama at Birmingham School of Nursing, said it has been gratifying to connect parents of a child newly diagnosed with muscular dystrophy to parents who have been living with their child’s diagnosis for many years. The more experienced parents, she said, have much to offer their less experienced peers about what to expect.
“From the best way to perform tasks like transferring a child from a wheelchair into a bathtub to giving emotional support to parents that are still digesting their child’s diagnosis and the major life changes it will bring, the parents that have been living with their child’s diagnosis for a significant period of time are able to share helpful tips on every aspect of raising a child with a neuromuscular condition,” said Cassidy.
In addition to having select parents share their stories as featured speakers, the monthly online meetings via Facebook live also include speakers with professional backgrounds in mental health, nutrition, occupational therapy, and other disciplines to speak on topics of interest to participants.
Cassidy credited the MDA staff for their strong support of her project, which she said was helpful in getting parents to participate. The organization’s staff will continue to work with parent leaders who are active in the group to sustain the program beyond her Fellowship year.
Cassidy began her involvement with MDA as a volunteer counselor at the organization’s annual Kids Summer Camp. Once she became a registered nurse, she continued to attend camp as part of the medical team.
“MDA summer camp is one of the greatest weeks of the year, when children with different types of muscular dystrophy can all participate in every kind of activity that they are usually unable to because of their diagnosis,” said Cassidy. “Everyone at camp, regardless of wheelchair usage, is able to zip line, go horseback riding, enjoy the water slide, and go tubing on the lake.”
After getting acquainted with the organization through the summer camp, Cassidy started volunteering at other MDA events like fundraisers and clinic days. As her involvement grew, so did her concern for the parents and caregivers she met through the organization.
“These parents or caregivers were often more socially and physically isolated than most due to the full time caregiving needs of their children,” said Cassidy. In the past MDA offered an in-person support group for parents and caregivers, but attendance was poor due to the fact that participants often could not find substitute caregivers,” said Cassidy. Another barrier was that parents were spread all over the state, which made determining a central meeting location difficult.
Cassidy said her Fellowship year has given her a greater appreciation for interdisciplinary teamwork.
“Meeting and working with Fellowship peers from a variety of academic backgrounds and disciplines has shown me the benefit of drawing on many different backgrounds and viewpoints in thinking through issues and tackling problems,” she said. “As a professional in both my career and in volunteer efforts, I will keep in mind the lessons I have learned from the diverse and talented group of fellows I have the pleasure of working alongside for the year.”
Cassidy also looks forward to joining the network of Schweitzer Fellows for Life.
“It’s an exciting and challenging opportunity to be a part of a community that strives to better the world in such a variety of academic, social, and environmental aspects,” she said. “I enjoy knowing that I have a large network of individuals that I can lean on for support and guidance in future philanthropic ventures. Meeting Fellows for Life that have been able to balance successful careers and dedicate time to improving the community makes me realize that I can be a successful professional and be an active volunteer.”