Family-Centered Care: How Riley Programs Support Families
Natalee Garrett cannot imagine what life would be like for her daughter without the Child Life program at Riley Hospital for Children at Indiana University Health.
“They truly become family and it truly becomes a home away from home,” Garrett said about her family’s past seven years visiting the hospital for surgeries and appointments. Her 9-year-old daughter, Bette Blackwell, was diagnosed with a connective tissue disorder at age 2 and has had as many as eight surgeries to deal with health complications.
Garrett said Child Life Specialists’ knowledge and understanding of what a child is going through decreases anxiety and takes pressure off the family. From explaining how a procedure works, to “just being able to run downstairs to grab a cup of coffee – to know that Child Life is up there with her for 20 to 30 minutes working on things or doing a craft is a great relief,” she said.
At Riley, taking care of children means much more than treating their illness, injury or medical condition. It means anticipating kids’ broader needs and providing family-centered care that supports families through vulnerable and challenging times.
That’s why raising funds for Family Support programs like Child Life and Social Work remains a top priority of Riley Children’s Foundation. During the most recent fiscal year, the foundation provided more than $4.7 million for vital Family Support programs thanks to the generous support of donors.
More than 75 percent of the funding for Child Life and Social Work comes from Riley Children’s Foundation donors.
Being in the hospital can have a tremendous impact on both children and their families,” said Paul R. Haut, M.D., chief operating officer for Riley Children’s Health. “On an emotional level, it can be scary and stressful. Beyond that, managing a complex illness can cause other hardships by adding ongoing expenses, limiting a parent’s ability to work, or requiring access to special services or accommodations. Our family support services help families navigate these difficult circumstances and connect them to resources they need in the hospital and in their communities.
“Unfortunately, these programs aren’t covered by insurance,” Dr. Haut added. “We rely on the generosity of donors to keep them going and growing."
CHILD LIFE SPECIALISTS SERVE AS COMFORT EXPERTS
Child Life Specialists are “comfort experts” who ease fears, offer joyful play experiences, help kids cope with pain and discomfort, and normalize the hospital environment. The team of 25 Child Life Specialists provided more than 43,000 impactful encounters with patients from September 2019 through September 2020.
What does that look like?
Child Life Specialists might help prepare a child for surgery by using play to familiarize patients with medical equipment and rehearsing the patient’s job so they can be active participants in their care. In the Neonatal Intensive Care Unit, Child Life Specialists might interact with babies in playful ways to coax them toward developmental milestones. And in the Emergency Department, they could distract kids with fun activities during a procedure, or assess the child’s understanding of the medical treatment and address their fears by developing a coping plan together with the child and family.
For the Blackwell family, that support made all the difference.
At age 3, Bette needed surgery to repair the bone structure in her chest. “She was having a bar put in her chest and the Child Life Specialist came into her room with a cloth doll,” her mother said. “They used a paper clip to show where her bar was placed, and incisions were on the doll.”
“I can’t imagine what life would be like without the Child Life Specialist in place,” she added.
“Everyone goes above and beyond to make sure that you feel at home as possible when you can’t be home.”
Like other areas of the hospital, Child Life had to quickly adapt how it delivers care as a result of the coronavirus pandemic.
The Child Life Zone, an area where kids and their families typically go to play, learn, laugh and relax, closed to patients and became a “command center” for the Child Life Specialists. The “Zone to Go” program ramped up, delivering activity kits to more kids in their rooms. Parties and Pet Therapy went on hold, so more focus shifted to Riley’s closed-circuit TV programming and virtual events.
The Child Life team has even coordinated virtual visits with groups such as the Indianapolis Colts via a robot that lets the children interact directly with players and cheerleaders. For patients in isolation because of confirmed or suspected COVID-19, Child Life Specialists have provided virtual support through technology.
“Thanks to generous donor support, even with many changes this past year, one constant at Riley was the presence of Child Life Specialists,” said Sara Barnett, Riley's manager of volunteer resources and Child Life. “We are incredibly grateful to each person who supports our programming so that we could continue caring for Riley families, in essence becoming emotional first responders.”
SOCIAL WORK TEAM ADVOCATES AND EMPOWERS
The overarching goal for Social Work is to ensure that all Riley patients and their families have an advocate to empower and support them as they navigate the complex health care system. This includes providing behavioral health and substance abuse assessments and connections to therapy, referrals to resources in local communities, crisis intervention, and emergency assistance for transportation, meals and lodging, among other services.
Last year, Riley’s 28 social workers had about 30,000 patient/family encounters. And they provided 3,093 families with one-time financial assistance totaling more than $440,000 made available by donors.
For example, the Social Work team recently helped several families whose children were undergoing stem cell transplants pay to get their air ducts and carpets cleaned. This kind of deep clean is important before children return home because stem cell transplants make them more vulnerable to infection.
In another instance, a family was forced to move when their landlord put their house on the market. Social Work funds helped the mom with a deposit for a new rental that she otherwise couldn’t afford.
“As I contemplate National Social Work Month this March, I reflect on this year’s theme which recognizes ‘Social Workers are Essential.’ If you have ever witnessed a skilled Social Worker provide sensitive information to a patient and their family in a way that helps them to understand and grasp the significance of the message, you will understand why I echo that the work of the Riley Social Work Team is essential,” said Cheryl Ramey-Hunt, Riley’s director of integrated care management, case management and social work. “Their unique training combined with their deep levels of compassion allow services to be provided to our families while championing their strengths and their challenges.
“Riley would not be the same without the Social Work Team, and we are all indebted to the generous hearts of our donors and the work of the Riley Children’s Foundation,” she added.
HOW YOU CAN HELP
To learn more about how you can support Child Life, Social Work and other Family Support Services with a gift to Riley Children’s Foundation, contact Marcy Zunk at 317.808.8556 or MZunk@rileykids.org.
Interested in fundraising for these programs? Get started with your own fundraiser for Child Life and Social Work today. Or learn more about the many ways you can fundraise for any Riley program, including creating a personal online fundraising page, hosting a fundraising event, or joining Team Riley.
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