Shriners Children’s Patients Past and Present Connect Through Support Groups

The late, great Bill Withers once sang, “We all need somebody to lean on,” and Shriners Children’s couldn’t agree more.

Our team members understand that when a family brings their child to one of our facilities, it’s
serious. Whether we’re treating them for burns, orthopedic conditions, sports injuries, spine or spinal cord issues (like scoliosis), or craniofacial issues, we understand the gravity of the situation. This is a traumatizing time, both physically and emotionally, for the patient, and the family can feel the repercussions just as strongly.

That is why Shriners Children’s believes it’s imperative to offer support in every way possible to the patients and families who walk through our doors via our signature wrap-around care. It seeks to treat the overall health and well-being of the child and provide much-needed resources to families. Support groups form one pillar of that care.

Sometimes, when you’re going through something difficult, it can be lonely. You feel like nobody else on the planet could possibly understand your pain, anxiety, fear and other complex emotions. But patients and families discover they’re not alone through complimentary in-person and online support groups offered throughout our facilities, each tailored to a different condition and sometimes to a select age range.

The goal: To provide patients and families with a support system of peers, as well as tools and coping mechanisms from group leaders who understand the condition from a professional level. Often, these groups are organized by individuals who have experienced the condition firsthand, providing an extra level of understanding.

We talked to the leaders and members of support groups at Shriners Children’s locations across the country for an inside look at these circles of connection and healing – and to discover why they’re so crucial.

Teen Scene in Spokane

The adults among us will remember what a tumultuous time it was being a teen. But former Shriners Children’s Spokane patient Claire – who was first seen about a possible scoliosis diagnosis when she was 13 years old and subsequently went through spinal fusion surgery and recovery – had the strength and vision as a young teen to look beyond herself and form a support group for her peers, the Teen Scoliosis Group. She desired a safe space for teen girls with the condition to share advice and support, so she began the group online and hosted its first in-person meeting in 2022.

Today, Claire’s legacy lives on through group leaders Baylee Valentine, MSW, and M. Kelly Dallmann, RN, who both work in care management and wanted to make the group more inclusive when they took over in 2024.

“This was something we were excited to restart and had the idea to open our group to all teens, not just female,” they said. “We saw so much potential to this group that we wanted to make it more visible by working with our marketing team to make flyers to distribute throughout the entire hospital, creating a QR code and email link to make it more accessible, and utilizing social media to market to our community.”

Valentine has a family history of scoliosis, and Dallmann has worked with many scoliosis patients, so they both deeply understand the condition and how difficult it is for teens to live with as developing young adults.

“Teens are the most susceptible to the peer pressure of fitting in and insecurities of body image,” they said. “Things like bracing for 22 hours out of the day is very challenging for this age group, and connecting with others going through a similar experience is very empowering.”

The group offers activities like creating succulent arrangements, crafting wreaths, decorating cookies and making vision boards, all of which “are meant to help conversations flow and keep teens involved,” they said. Often, Shriners Children's physicians join the group to chat with the teens and answer questions in a comfortable environment.

The formula seems to be working, as the group started with two to three patients per meeting and has grown to eight patients on average. Valentine and Dallmann have plans for future growth that might include splitting patients into age groups and even creating a group for parents.

But the group’s success is proven by more than just the numbers: The leaders have seen real change in their patients. “I have seen many group members become more confident, asking questions and being willing to share their experiences,” Valentine said. “While they are at different parts of their scoliosis journey, I know that the group trusts each other to be open and honest about all things scoliosis. I believe each group member feels heard and understood.”

Group members have also given positive feedback, but parents have been the most vocal about their appreciation for the Teen Scoliosis Group. According to Valentine, parents have said, 'This group has changed my daughter’s world,' 'I can tell my kid is enjoying group and seeing other kids going through scoliosis,' and 'This group has given my child more confidence.'

The fact that such a group exists – and that busy doctors take time out of their schedules to participate – speaks volumes about the Shriners Children’s culture of care, she said. “Since I walked in the doors of Shriners Children’s, I knew it was a different and amazing place. Everyone was welcoming, the atmosphere was open, the employees were all smiling and knew each other across all departments and kids were getting top-tier medical treatment from fantastic providers.”

She added: “Offering this group to our community members fits right into my vision of Shriners Children’s: a place where kiddos can go to feel comfortable and supported even when going through the hardships of medical treatment.”

Caring for Parents in Northern California

When a child is seriously burned, their parents are very nearly wounded as well, said clinical psychologist Sylvia Garma, Ph.D.. She has spent the past 25 years providing consultation services at Shriners Children’s Northern California in Sacramento, dedicating the past five years to burn care. Although the patient is her primary concern, ensuring that the parents are coping with the injury as well as possible is crucial to sending the patient back to a supportive, healthy home environment, she said.

In the face of such trauma, most parents and caregivers face a complex range of emotions, ranging from guilt, inadequacy and anguish to fear, concern and anxiety. In addition to these health concerns, parents may have financial worries due to spending time away from work or from losing employment after taking time to be with their child, Dr. Garma said.

As well as Dr. Garma’s individualized psychological consultations, parents of burn victims at Shriners Children’s Northern California have another resource: Burn Parent Support Group, tailored to their exact needs. It is led by Gwen Gamble, LCSW, ACM-SW, who works in care management on the burn team, and includes Spanish translators on-hand to help with any language barriers.

During the weekly, one-hour parent support group, patients are supervised by either nursing staff (if inpatient) or by recreational therapists in a play area (if outpatient). “The goal is to provide parents a place to step away from their children and to focus on providing and receiving support from parents who are also coping with having a child hospitalized with a burn injury,” Gamble said. 

The group also has an educational component in which staff from various burn specialties, such as physical therapy, child life and nursing, spend 15-20 minutes providing information about burns and answering parents' questions. Past patients and parents trained as peer supporters also occasionally join the group to share their stories.

The response has been overwhelmingly positive, especially from Spanish-speaking parents and caregivers who appreciate the translators' help. “This support group helps us because we express what happened to us when we arrived and everything we experienced,” said patient mother Alina (translated from Spanish). “By the time I arrived, I already had a more experienced mother supporting me, and that made me not feel alone.”

Gladys, another support group member, agreed. “With the other moms, you make a connection that helps you a lot,” she said (translated from Spanish). “All cases are different, but they all have the same pain.”

Virtually SOARing in Ohio

As co-chair of the SOARing burn patient support group at Shriners Children’s Ohio, Lisa Meister, OTR/L, not only talks the talk, but she walks the walk. The survivor of an explosion in college, Meister knows firsthand how devastating a burn and its subsequent recovery can be. But she’s showing participants that it does get better, and life does go on. However, it takes time and healing. “We really felt that there was a need for our patients to connect with other burn survivors to share their common experiences and help build each other up,” said Meister and Lori Boerger, her support group co-chair and a social worker in care management.

Started in 2023, the virtual support group aims to connect burn patients 10 and older with other patients, no matter where they live. “As a group, we discussed other ways we could provide support for the children we work with so that they could connect with other burn survivors and share their common experiences and learn from each other,” they said. “Since our patients live in different geographic areas, meeting in person with everyone at once was not feasible. Virtual support group was brought up, and, after bringing the idea up to some of our patients, they expressed interest.”

The greater Survivors Offering Assistance in Recovery (SOAR) program was established by the Phoenix Society for Burn Survivors, which offers support and resources to the burn community. “Hospitals can train their professionals in becoming SOAR coordinators with training provided by Phoenix Society,” said Meister and Boerger. “Phoenix Society can also train peer supporters to provide support for burn survivors and their families.”

The Ohio youth decided to call their group SOARing, with a phoenix (a symbol of rebirth, renewal and hope) as its logo. Activities, like crafting and games, and discussions help members build confidence, share advice and bond. “They create friendships through the group, and that friendship is also being carried over outside of the group,” Meister and Boerger said.

Over the past three years, they have seen the group change both in size and attitude. “We have seen members open up more and share their thoughts and feelings with each group meeting,” they said. She has gotten feedback filled with gratitude and joy, with patients excitedly anticipating future meetings.

But Meister also gets something in return from the SOARing kids. “The members in the group make me smile and inspire every time we meet,” she said. “They are a really great group of kids, and they have helped me more than they know. They show me strength and resilience.”

Patient Alumni Network

At Shriners Children’s, we know that many medical conditions don’t go away within years or even a lifetime. So we created the Patient Alumni Network, an online community where past patients of our healthcare system can connect and support one another across the globe, whether they’ve resolved their health issues or are continuing to manage them. Because everyone has a story to tell.

Formed in 2022 as part of Shriners Children’s 100th-anniversary celebration, the Patient Alumni Network also seeks to provide opportunities for former patients to share their personal experiences with patients, Shriners, donors and the public. This might include attending Shriners Children’s and Shriners International events, as well as other functions.

Led by President Lily, the network hopes to create a mentoring program to connect alumni with current patients so they can provide support, guidance and knowledge. Learn more about the Patient Alumni Network and how you can join.

It’s yet another powerful resource that Shriners Children’s offers patients past and present to ensure that they’re getting the social and emotional support they need to live their best lives.