A pediatric program helping adults through cardiovascular disease, surgery

A program that has helped children and their families reduce the stress and anxiety associated with hospitalization and illness for over a century is finding success for adult patients undergoing complex heart procedures.

The Child and Family Life program at University of Michigan Health C.S. Mott Children's Hospital has its roots in early play programs and a hospital school program that began in 1922.

The concept evolved into a team comprised of multiple disciplines—including certified child life specialists, board certified music and art therapists, patient technology specialists, certified teachers, child life assistants and others—that focuses on meeting the emotional, developmental and psychosocial needs of patients and families.

More than 500 child life programs exist in the United States today.

For the longest time, however, nothing like them existed in the adult patient world, says G. Michael Deeb, M.D., a cardiac surgeon at U-M Health.

The role U-M's Child and Family Life program plays in communicating with patients and alleviating their concerns and anxiety through difficult health situations inspired Deeb, who has practiced in Ann Arbor since 1986.

"Cardiac surgery, while lifesaving, can be a traumatic experience that causes a tremendous amount of pain and anxiety; that can result in a poor overall medical experience," Deeb said.

"I knew that this type of model could benefit my own practice by helping my patients to better cope and navigate pre- and post-surgical life. I thought it might even help us reduce opioid prescriptions, which have historically been the frontline therapy for pain after cardiac surgery."

Building a program

Motivated not only by the successful Mott program but also by the American opioid crisis, Deeb began studying the impact of a child life specialist being deployed in adult cardiac surgery patients at U-M Health.

Through a research grant Deeb was joined in the work by Lindsay Heering, M.S., CCLS, Mott's director of Child and Family Life, Julie Piazza, M.S., CCLS, senior project manager in the U-M Health Office of Patient Experience, and Stefanie Peters, FACHE, M.P.A., LMSW, chief administrative officer of the Frankel Cardiovascular Center.

Their research led to initiation of a Patient and Family Life Services pilot program at the Frankel Cardiovascular Center in 2022.

Establishing a patient and family life specialist—a role that, at the time, did not exist—required careful consideration and creativity.

"The individualized procedural care plans utilized in the child life program proved helpful to patients, families and health care providers for ensuring reduced pain and anxiety and improving overall patient experience," said Piazza, who has worked at Michigan Medicine for over 20 years and served as the project's primary investigator.

"Our task was to continue efforts that had taken years to build comfort and develop and translate them into a new care environment for adults."

Initially, the patient and family life specialist was called a "comfort coach."

Their work with patients includes:

• Procedural support
• Non-pharmacologic pain management
• Psychological and experiential preparation
• Coping skills and anxiety management
• Individualized care plans
• Patient and family-centered care

"It is all about meeting patients where they are and helping them to understand their care while providing comfort and cultivating resilience and coping skills," Heering said.

In determining why they would use the child life model, the program developers considered the specific child life knowledge, skills and abilities that are transferable to serving adult populations.

These include child life assessment, which focuses on the patient's developmental level, family systems and risk factors related to stress, along with attention to the emotional safety of patients and families and personalized therapeutic interventions.

"There is much we can apply from years of experience and evidence-based child life practice in pediatrics within this paradigm shift," Heering said.

Leaders of the pilot program met with nursing and physician leads in several units to discuss how the specialist would be used in certain cases.

They focused on assistance with psychosocial and emotional support to curb anticipatory anxiety.

Consultations began with the specialist being called to all cardiac catheterization cases, but the program grew as providers saw the utility for patients with many conditions.

"Although our provider and nurse teams are excellent at making medical decisions in conjunction with patients, we are not adequately trained at helping patients deal with the anxiety and stress that come with undergoing many cardiovascular procedures," said Adam Stein, M.D., a cardiologist at the Frankel Cardiovascular Center.

"The pilot program team has built out a process so that patient and family life specialists would meet with the patient before a procedure and provide them with psychological preparation to help with the pre-procedure stress. It's been wonderful."

Patient experience

Patients quickly took to the new resource of a patient and family life specialist as the role became integrated into the cardiovascular center care team.

"A lot of adults have terrible fears that many of us won't talk about," said Marilyn Citron, 84, of Birmingham, Mich.

She was connected with a patient and family life specialist at U-M Health after being told her aortic valve needed to be replaced.

Citron did not have any family in the area, and she had no one with whom to share her concerns.

"I was a 5-year-old in an 83-year-old body—I am not the only one with a fear of dying," she said.

"I was able to express my fears and felt safe speaking with the patient and family life specialist. It was really nice to feel acknowledged without feeling critical overtones. In health care today, I don't think most people get that experience."

Citron underwent a transcatheter aortic valve replacement, or TAVR, in January 2023.

Her relationship with her patient and family life specialist continued through follow-up.

The specialists are able to divert a patient's thoughts away from aspects of the surgical process that can be painful or uncomfortable, says Pamela Hottle, 62, who had open heart surgery at the Frankel Cardiovascular Center.

"They know how to calm a person down, keep the fears away," Hottle said.

"I didn't even feel pain when my tubes were removed. I can't say enough about this team. They are so mindful of anything a patient can experience."

It is an honor to walk alongside patients and families during these difficult times, says Jessica Jenkins, CCLS, former patient and family life specialist and current outreach specialist in the U-M Health Department of Psychiatry.

"There is no age limit to stress, fear, pain or anxiety that can come with serious health care events," Jenkins said.

"Patients can benefit so much from someone there to offer support, helping them understand their medical experiences, manage pain, mitigate anxieties and impact overall coping."

A future for the program

Response to the burgeoning program has been overwhelmingly positive, Deeb says.

"While we continue to research how this impacts pain, opioid prescriptions and future health care utilization by cardiac surgery patients who work with patient and family life specialists, it remains clear that the service is valued by patients going through the process," he said.

"When we bring compassion back into medicine, everyone benefits."

Providers have also indicated that the presence of the patient and family life specialist reduced their stress levels and workloads, allowing them to feel that they were better able to care for other patients.

"Having this service makes a positive impact on the well-being of care providers, which is so essential in high stress areas such as the Frankel Cardiovascular Center," Stefanie Peters said.

In the program's first full year, more than 755 people—407 patients and 348 family members and caregivers—interacted with a patient and family life specialist.

Hospital faculty and staff initiated over 100 consultations for patients who needed extra support.

The psychosocial supports provided by this pilot program have filled the void in adult health care by allowing patients and families to feel seen, heard and valued, says Caty McCarthy, CCLS, M.S., a patient and family life specialist at U-M Health.

"We believe that this program needs to expand outside the walls of Michigan Medicine and are hopeful that it will become a standard of care in adult health care facilities across the nation."

More information:
Alexander A Brescia et al, The Impact of Nonpharmacological Interventions on Patient Experience, Opioid Use, and Health Care Utilization in Adult Cardiac Surgery Patients: Protocol for a Mixed Methods Study, JMIR Research Protocols (2020). DOI: 10.2196/21350

Julie Piazza et al, Child Life-Facilitated Coping Support With Adult Patients Undergoing Cardiac Surgery: A Pilot Program, The Journal of Child Life: Psychosocial Theory and Practice (2022). DOI: 10.55591/001c.38502

Provided by University of Michigan