Crossing the Chasm to Adult Care Settings: A Journey of Discovery and Research

Julie Piazza, MS, CCLS
Co-Primary Investigator, Senior Project Manager, Office of Patient Experience
University of Michigan Medical Group, Michigan Medicine 

Alexander Brescia, MD
Co-Primary Investigator, Cardiac Surgeon, Frankel Cardiovascular Center
University of Michigan Health, Michigan Medicine

Lindsay Heering, MS, CCLS
Administrative Director of Child & Family Life, C.S. Mott Children’s Hospital
University of Michigan Health, Michigan Medicine

Jessica Jenkins, BAA, CCLS
Lead CCLS Clinical Trial, Frankel Cardiovascular Center
University of Michigan Health, Michigan Medicine 

Stefanie Peters, FACHE, MPA, LMSW
Chief Administrative Officer, Frankel Cardiovascular Center
University of Michigan Health, Michigan Medicine

Molly Dwyer-White, MPH
Vice President, Safety & Quality
Michigan Health & Hospital Association (MHA)

Executive Director, MHA Keystone Center
G. Michael Deeb, MD
Herbert R. Sloan Professor of Cardiac Surgery, University of Michigan Medical School
Faculty Mentor Clinical Trial and Feasibility Study
Frankel Cardiovascular Center, University of Michigan Health, Michigan Medicine

Certified Child Life Specialists (CCLS) are commonplace in pediatrics; however, this type of support is not established in adult healthcare, nor is it known if it would improve adult outcomes or satisfaction. Medical experiences often evoke fear, anxiety, and uncertainty and these stressors do not disappear just because we reach adulthood. The psychosocial and emotional needs of adults related to fear and anxiety with painful procedures often have gone unmet, and proven strategies effective with children could be explored further. Some adult hospitals have effectively used nonpharmacologic techniques to reduce hospitalization stress.  We designed a feasibility study which informed a subsequent clinical trial to study the CCLS role in the adult world as an Adult Life Specialist (ALS) to provide psychosocial and emotional support, including nonpharmacologic interventions in adult cardiac surgical care. Knowledge gained from this research has developed insight about what is important to adult patients regarding their overall healthcare experience.

What inspired the study?   

Our large academic medical center includes a children’s hospital which is physically connected to the adult hospitals. Though the needs are unique in pediatric versus adult care settings, we have discovered there are also growing opportunities to share ideas for collaboration to support patient-family experiences across the health system. It’s often unclear whom to contact and whom to provide information and resources from one area to another.

Initiatives in the children’s hospital, like individualized procedural care plans, were increasingly requested by pediatric patients transitioning to adult care settings. These tools demonstrated to be helpful to patients, families, and health care professionals, ensuring reduced pain and anxiety and improving overall patient experience. So why did they need to stop being utilized in adult care settings? Was there a way to continue the efforts that had taken years to develop build on empowerment and coping skills and enhance their new adult care environment? These were some of the questions the team pondered.

Conversations related to patient experience, comfort initiatives, and increased pain management, preparation and psychosocial support needs in adult care settings led to exploring research options. It turned out we were not the only ones wondering about the disparities on the adult side. Nursing, social work, phlebotomy, spiritual care, and advanced practice providers were also curious why the services of child life were exclusive to pediatrics - could they be adapted and expanded to adult care settings? But how? Cardiac surgery connections came Dr. G. Michael Deeb who shared a similar concern with escalating complex adult health care needs, which fueled opportunities to begin formulating research questions: “What would be beneficial to patient experience, individualized care, pain and anxiety reduction, and increased awareness of the needs shared by adult patients, families and multidisciplinary staff?” The impact of what we were proposing needed to be explored through a scientific study. After testing the waters initially through a feasibility study with internal grant funding, we then expanded to an externally funded randomized clinical trial at the Frankel Cardiovascular Center (FCVC) at Michigan Medicine. 

The Role of Child Life in Adult Settings

Scope of practice has been an ongoing conversation with child life specialists serving in our “comfort coach” role (the initial title given to our proposed Adult Life Specialist), our research team, multidisciplinary stakeholders, and senior leaders. In determining why child life, careful consideration was given to the specific child life knowledge, skills, and abilities that are transferable to serving adult populations. These included preparation, procedural support, nonpharmacologic pain management, diagnosis education, development of coping skills, anxiety management, patient and family-centered care, individualized care plans, and assessment and attention to the emotional safety of patients and families. Child life specialists connect with patients, meet patients where they are, help them understand, provide comfort, support, and cultivate resilience.

The foundations of child life, our educational background, theoretical framework, and scope of practice provide a strong foundation for child life specialists to step into work with adult patients. With the disparate gap in supportive care services for adult healthcare, the addition of any psychosocial service would be valuable to adult patients and families. Child life has an opportunity to fill this void. We are qualified and poised to do this work, we have the foundational knowledge, skills, and abilities to capitalize on this opportunity to further make our mark on healthcare and to continue to evolve as a profession.  Additionally, this work may serve as a new opportunity for child life specialists, who have plateaued in their pediatric clinical work, to be presented with a new challenge, and to create a whole new path to grow and evolve professionally. In turn, this may create more entry level child life job opportunities within pediatric settings. 

To determine if the Adult Life Specialist could become a valuable, contributing member integrated into the adult surgical clinical care team, careful consideration was given to the transposition of evidence-based child life interventions used with pediatric patients for use with adult patients having aortic surgery. In addition, the research team sought to determine if these adult patients would respond positively to these techniques, which included preparation for their surgery and postoperative experience and development and provision of individualized coping plans inclusive of various distraction (i.e., conversation, art activities, virtual reality) and relaxation (i.e., guided imagery, deep breathing, music, mindfulness) strategies. Secondary aims of this study were to determine if the non-pharmacologic interventions could reduce anxiety and improve the overall patient experience.   In the later clinical trial, we also examined the impact of child life procedural support during two cardiac procedures, since this core child life intervention further differentiates child life from other allied health professions.

Multidisciplinary Stakeholder Considerations

Stepping into the adult world came with significant and thoughtful consideration. Are there gaps in our current child life curriculum to transcend into adult healthcare? Yes. This work has, however, been initiated within the safe space of research as the preliminary step to explore possibilities and determine next steps for further consideration. Our study team engaged an array of multidisciplinary stakeholders, including cardiac surgery, nursing, advanced practice providers, social work, psychiatry, spiritual care, music therapy, art therapy, patients, families, and our Office of Patient Experience and obtained buy-in from senior leaders from our adult cardiovascular and pediatric hospitals. 

Engagement with the Association of Child Life Professionals (ACLP) was critical for us when working toward institutional and departmental buy-in. We had ongoing conversations, from the beginning, with ACLP leadership to seek their input and keep them apprised of our work. While they shared similar thoughts, questions, and concerns around what it would mean to expand our scope and gaps in our education and clinical training, they have been supportive of the innovation and opportunities our research and next steps could present.

What kind of training did you need to provide for child life professionals to work with adult patients? 

Adult Life Specialists were oriented to the adult cardiac setting by the co-primary investigators, a research coordinator, and interdisciplinary cardiovascular center team members and spent time observing the clinical workflow across the care continuum. To move child life specialists into a new setting, intentional effort was directed to supporting the comfort and confidence of the staff providing such services in the adult care setting. Orientation to the cardiovascular center’s environment included wayfinding and making connections for supportive communications with key players and teams in each clinical area to learn the usual care process, timing for identified research benchmarks, and specific cardiovascular center protocols. When designing the study, a great deal of time was spent communicating with multidisciplinary staff, cardiovascular center administration, and child life specialists serving as comfort coaches. Additional training focused on adult learning styles, lifespan development, individual and team meetings, relevant research articles, and an overview of the physical, psychological, and emotional implications of cardiac surgery provided by Dr. Alex Brescia, co-primary investigator, and cardiac surgery resident. “In some ways it was like going from Venus to Mars,” says Dr. Deeb. “There is a comfort, and rightfully so, from years of experience in pediatrics...this is a whole new paradigm shift.” 

Our study necessitated funding to hire a full-time primary comfort coach. In selecting our primary Adult Life Specialist, we were seeking a CCLS with a master’s degree (i.e., counseling, therapeutic recreation, social work), education in lifespan development, and an experienced CCLS. Selecting our primary comfort coach was key. While Jessica Jenkins, our first and primary comfort coach, is currently pursuing a master’s degree, she has experience working in various clinical settings including surgery, an ambulatory clinic, emergency department, and an inpatient unit within three children’s hospitals and health systems. She is a strong clinician with solid communication and advocacy skills and is especially talented in building collaborative relationships with her multidisciplinary colleagues, patients, and families alike. Her well rounded experience, passion, professionalism, emotional intelligence, and willingness and excitement to try something new collectively positioned her to successfully step into this role.

Due to the need for a Adult Life Specialist back up team, we initially asked for volunteers from our child life staff. It then became apparent to our study team that we needed around the clock coverage, and we expanded our team to 15 additional CCLS based on scheduling to account for evening, weekend, and overnight study needs. Fortunately, we have established 24/7 child life coverage that has previously encompassed consults to our adult hospitals that have steadily increased over time. Buy-in from our staff participating in the study, was crucial. Lindsay Heering, Director of Child and Family Life, met with each CCLS to share our passion, vision, and excitement for this innovative work, building a sense of pride among our team; we have gone from being one of the first recognized child life programs originating in 1922 to now engage in this pioneering work. We outlined the importance and application of research and individually walked through their questions, concerns, and ideas. Our study would not have been possible without our team effort. We have so much gratitude for our comfort coach team for their adaptability and courage to step into a whole new world. 

Reactions From Other Professions

We had some questions regarding the scope of practice and boundaries of the adult life specialist raised by the psychology and social work representatives involved in the development of the trial. In child life, we maintain strong boundaries and refer to social work and psychology when needs go beyond our scope of practice. These same boundaries apply in the adult setting. We had conversations to clarify and reassure that these boundaries were identified and would be maintained. The social workers in the ICU and the step-down unit were both highly supportive of the comfort coach role. They both identified gaps in the support available to their adult patients and confirmed needs related to fears, anxieties, stress and pain that affect hospitalization. “Inpatient social work does not have the workload capacity to spend an extensive amount of time with patients to do this, however, this is a concern for many,” FCVC ICU social worker. It was astonishing to see the support for the comfort coach role grow as the trial continued and the role gained traction. In daily care team huddles, advanced practice providers and social workers often identified needs for patients not enrolled in the trial and spoke to the desire to have these services available regularly. “During the study, we often had it brought up that another patient (not enrolled) would benefit from the same services,” FCVC ICU Respiratory Therapy Leadership. “Anxiety is very present in these patients and support such as this really helps pain and anxiety,” FCVC ICU Leadership.

The Comfort Coach Name

Our study team, with cardiac surgery representation, identified the need to avoid the use of the “child life specialist” title when working with adult patients to avoid confusion and gain broader acceptance. For our clinical trials, the title “Comfort Coach” was selected. It was a term that was vetted through our patient-family advisory council, multidisciplinary staff, and providers to determine if it was understood, respectful and informative, enough that patients, families, and staff would have a clear understanding of expectations for the deliverables from this individual. We acknowledge the title necessitates deliberation on a greater scale if work with adult patients were to be validated and embraced as an extension to the child life profession. Additionally, we recognize the connotations comfort has in relation to palliative or comfort care. We have also had several coach titles surface within our institution giving us pause on the applicability to this title.

Reflections From the Lead Comfort Coach, Jessica Jenkins, CCLS

“I wish there were child life specialists for adults'' is a phrase we often hear from parents of the kids we are working with and multidisciplinary colleagues as they learn what we do. Fear, anxiety, and vulnerability surrounding healthcare experiences are prevalent across the age continuum along with the desire to be informed about what is happening. The psychosocial support, education, preparation, pain management, and coping strategies used by child life specialists are adaptable and transferable to the adult population and were welcomed by our organization. We expected roadblocks, uncertainty, and advocacy needed for this type of work and were surprised and overwhelmed with the positive response. Nurses, patient care techs, respiratory therapists, and advanced practice providers identified the need for this support and recognized that their workloads did not allow them to spend the time with patients as they wished, subsequently resulting in moral distress around this void in care. Medical staff were given a survey at the completion of the clinical trial. When asked what benefits this role might have, a step-down unit nurse said, “They would help the patients cope with what they were going through, help the nurses in providing individualized care and help the hospital reduce pain med usage and complaints about pain control.” A cardiovascular ICU nurse answered, “I worked with a comfort coach (title selected for research purposes, further described later) multiple times, and they were extremely helpful in comforting patients and reducing need for possible pain/anxiety medicine. The comfort coach was able to reduce anxiety, and I could focus on the procedure and getting the patient extubated more efficiently.”  Lastly, a physician's assistant responded, “The advanced practice team and nurses are pulled in a million directions. Often, they don’t have as much time as necessary to assist patients through the anxiety, stress, and experience of their surgery and hospitalization. Having an additional person to provide active listening, empathy, validation, and most importantly time would go a long way.” It was the focus on establishing the “comfort coach role,” building partnerships and collaborating with the multidisciplinary team that made this transition into the adult world so successful.”

Hope for the Future

Photo Caption: Dr. Deeb: "People have empathy for children when they are dealing with paint from surgery...where's that same empathy for adults? They hurt, too."

Dr. G. Michael Deeb reflects on his vision for the future, “For our hospital and institution: I would like the University of Michigan School of Health Sciences to develop a Child Life Specialist Post-Graduate Advanced Practice Certificate Program to educate, train and render certificates for Adult Life Specialists (ALS). I envision Michigan Medicine (MM) Hospitals partnering with the University School of Health Sciences to become the epicenter for the practical clinical in-hospital training rotations through an institutional commitment to help develop and support a strong MM clinical ALS program.”

“In addition, I would like to see strong partnership, collaboration and integration of Social Work, Care Management Specialists, Spiritual Care, and the Office of Patient Experience with the ALS program. ALS will not compete with these other specialty groups but augment and enhance the level of comprehensive care by adding a unique set of skills and tools. This type of institutional collaboration and commitment to patient/family experience and emotional wellbeing will improve patient clinical outcomes and safety. Another goal for our institution is to develop reinforced learning tools for coping strategies so patients can continue to use these types of intervention after discharge from our institution and for future health care encounters.”

“For the profession of Child Life: I believe that the ideology and scope of practice of Child Life needs to be transitioned into the adult health care world where the unique child life skills and tools can be used to fill a huge void that currently exists for treating the emotional and psychological needs for the adult patient population. There is no reason to continue to cloister this essential skill set exclusively to the pediatric patient population. Children grow into adults that continue to have the same emotional and psychological needs that were present in childhood and become compounded through further life experience. Developmentally appropriate care needs to continue beyond adolescence. We, as health care facilitators, need to fulfill those needs through innovative programs using the current skills available and expanding and developing new skills and tools through educational and academic research programs. Through our initiative here at Michigan Medicine, I would like to see ALS expand globally as standard care for the adult patient population.

Special Acknowledgement to: CCLS-FCVC-Research Team, AJ Ivacko, James Piazza, Amanda Kasperek, Nickole Garvey, Christina Baello, Michaela Baker and Claudia Schwenzer who supported the research process, provided back-up support, and made this project possible. 

Publication Reference: 

Brescia, A. A., Piazza, J.R., Jenkins, J.N., Heering, L.K., Ivacko, A.J., Piazza, J.C., Dwyer-White, M.C., Peters, S.L., Cepero, J., Brown, B.H., Longhi, F.N., Monaghan, K.P., Bauer, F.W., Kathawate, V.G., Webster, M.C., Kasperek, A.M., Garvey, N.L., Schwenzer, C., Wu, X., Lagisetty, K.H., Osborne, N.H., Waljee, J.F., Riba, M., Likosky, D.S., Byrnes, M.E., Deeb, G.M. (2021). The impact of non-pharmacological interventions on patient experience, opioid use, and healthcare utilization in adult cardiac surgery patients: protocol for a mixed methods study. JMIR Res Protoc, 10(2). 

Quotes from Comfort Coaches (CCLS Dedicated Research Team)

“I think a lot of adults enter the healthcare world, with fear and hesitation, and sometimes without proper support. Having a dedicated person to go an extra step to provide comfort and teach coping, could change the fear associated with healthcare and could have potentially large impacts on patient satisfaction and hopefully long term healing.”

“I think this is invaluable but it needs more flexibility to allow for an individualized approach. I understand it was necessary for the study, but a "one fits all" approach was not ideal.”

"I thought this was a wonderful opportunity and experience that allowed for growth within myself.”

“I look forward to the doors it will open for others down the road to pursue.”

“Every patient has unique needs and being able to assess those needs and provide support as needed is a big reason why what comfort coaches do is so effective.”

“I felt that we were very limited and missed a lot of potential opportunities for emotional support, education on coping mechanisms, and non-pharmacological pain control. A few patients mentioned that they would have benefited from support in the few days following their surgery, when there were no immediate procedure needs, and they were left with their thoughts/anxieties/pain. This could present a great opportunity for supportive check in and further assessment of coping techniques.”

“The adult world is in its infancy in relationships with CFL (Child & Family Life). Research shows it takes 2 years for a group to build trust. More time is needed!”