Shriners Children’s Boston Child Life Team Supports Patients and Families Every Step of the Way

During Child Life Month in March, child life specialists from throughout the Shriners Children’s system are celebrated for their pivotal role in providing wrap-around care to children and families. At Shriners Children’s Boston, child life specialists become an integral part of a patient’s care team from their initial hospitalization until they age out of care. From the operating room to the inpatient unit, to the outpatient clinic and beyond, the child life team is a constant connection from medical staff back to the patient and family through each stage of treatment and recovery.

As the main source of psychosocial support for patients, child life specialists have the expertise to explain medical terminology and help children learn to advocate for themselves in an age-appropriate manner. They also support caregivers and siblings, building trust and understanding during a time of great uncertainty. “One of my favorite parts of being a child life specialist at Shriners Children’s Boston is the privilege to work with patients and families throughout various stages of their care,” said Jackie Raftery, MS, CCLS. “Child life specialists have unique training in how children and families cope with healthcare experiences, trauma and loss. Every intervention, activity and conversation we initiate has true intention behind it.”

According to Lori Connolly, PT, D.P.T., director of therapeutic services at Shriners Children’s Boston, child life has a unique and dynamic role in a burn care setting. “The way a burn injury impacts a child changes over time,” she said. ”They may have scars, difficulty with mobility, or struggle with their feelings about appearance. Our child life specialists are key in identifying what each child needs to help them cope with their experience, and can tailor our services to help them meet their therapeutic goals.”

The child life team at Shriners Children’s Boston includes three full-time and eight per-diem child life specialists. While each day is different, they routinely collaborate with all clinical departments. In the outpatient clinic, child life helps patients during procedures like burn dressing changes. They spend time on the inpatient unit daily and provide one-on-one support according to each patient’s specific needs. Before a patient’s sibling makes their first visit to the inpatient unit, the child life team helps to prepare them for what they will see and hear. Monthly pet therapy visits managed by child life offer patients and families companionship and a bright spot in their day.

A unique aspect of the child life specialist’s role at Shriners Children’s Boston is their involvement in the pre-operative area and the operating room. They help patients decorate their anesthesia masks and facilitate medical play to make the environment feel less threatening. “Even if patients have had multiple surgeries, it doesn’t always make it easier or more manageable,” said lead child life specialist Rebecca Wildes, MS, CCLS. “We accompany patients and their caregivers into the operating room to promote a more positive experience.”

By recognizing birthdays and other occasions, child life helps patients stay connected to childhood traditions and build positive memories while they are away from home. “Promoting age and culturally-appropriate interactions within the hospital is a way to normalize patient and family experiences,” said Jackie. “Celebrating special events like treatment milestones and holidays also encourages normal routine and development for children.”

The child life team also offers programming to help patients successfully return to their home, school and community. Prior to discharge, child life specialists contact a patient’s school to create a reentry plan that reduces anxiety about returning after a long absence. They also schedule an in-person visit with other care team members to prepare teachers and students, first helping patients to own their story and decide how they want to explain their injury and hospitalization to others.

“There can be a lot of mystery that comes with a burn injury, and our goal is to create as much normalcy as possible when patients return to school,” said child life specialist Brooke Allen, MS, CCLS. “It’s important for their peers to understand they may be wearing pressure garments or need a wheelchair, but they’re still the same person they were before. Each presentation looks so different depending on the age of the child – we could be in circle time with kindergarteners or presenting to an auditorium full of teenagers.”

Reintegrating back into life at home after a burn injury is a true team effort, and child life specialists at Shriners Children’s Boston are equally as involved at this stage of a patient’s recovery. Team Brave, held in collaboration with child life and the Boston Firefighters Burn Foundation, takes patients outside the walls of the hospital on special outings that build friendships, strength and self-confidence. The child life team also helps facilitate support groups for patients of different ages, creating an opportunity to form bonds based on their shared experiences.

The bond that patients share with their child life specialist is equally as meaningful. “You get to see the progression in children and watch them grow up right before your eyes,” said Brooke. “To see their scars, mobility and quality of life get better is so rewarding. Watching patients achieve things they never thought they could do is something that’s very special about child life, and this hospital.”