Connecting with Children of Adult Patients

Myra Cook, MSN, RN, ACNS-BC, CCRN, CSC

Shannon Sonnhalter, CCLS

Last March, Cleveland Clinic launched an innovative program to help children of patients in intensive care units cope with and understand their family member’s medical situation. The need for the Children of Adult Patients Program (CoAPP) arose when the healthcare organization changed its ICU visitation policy in 2011, allowing children under the age of 12 to visit family members.

“Allowing children to visit is a good thing, but we found that sometimes they were not prepared for what they might see,” says Myra Cook, MSN, RN, ACNS-BC, CCRN, CSC, Clinical Nurse Specialist, Critical Care. “In addition, there were situations related to bereavement support that nurses and other caregivers were not adequately able to handle.”

Shannon Sonnhalter, CCLS, Senior Manager Child Life, says that when the open visitation policy was adopted, her team began getting consults, pages and emails from ICU staff. “They wanted advice on how to help children coming to visit family members,” she says.

Together, Cook and Sonnhalter studied the issue and ultimately created the CoAPP.

Making the case for the program

Like any good researchers, Sonnhalter and Cook investigated the need for a program for children of adult patients prior to developing it. In 2012, Sonnhalter began tracking the number of ICU consults her
team received and whether or not they were able to meet the patient’s family. “We honored many requests, but we simply didn’t have enough staff,” she says. “They would’ve been pulled away from their primary work at Cleveland Clinic Children’s.”

In addition, Cook surveyed more than 260 caregivers about their perceptions of child visitation in the adult ICU. Among the results, 80 percent said they had not received training on meeting the needs of children visiting an ICU. Clearly, there was a caregiver need for the CoAPP.

Cook also spearheaded a qualitative study to investigate the experience of families with children visiting cardiovascular ICUs. Her team interviewed 12 families with 22 children asking about the children’s experiences while visiting the ICUs. The study revealed a recurrent need for age appropriate resources and preparation prior to visitation for both children and their families.

Helping families during difficult times

The CoAPP program is currently offered at three Cleveland Clinic hospitals: main campus, Fairview Hospital and Hillcrest Hospital. Sonnhalter describes its purpose: “We want to talk with kids, clear up any misconceptions they may have and help family members navigate conversations with the kids, because they are often grieving and upset, too. It’s a really difficult time for families.”

The program employs one full-time Child Life Specialist (CLS), with another set to be hired soon. They are experts in working with children and families with medical experiences associated with hospitalization, illness and death. In addition, the entire Child Life team has been trained to work with adult patients so they can consult with patients and families if the designated CLS is unavailable.

To consult with a CLS, caregivers first gain family consent. Then they can place a consult request in the electronic medical record system, or page Child Life for urgent needs.

There are several situations where caregivers in the ICU might call on a CLS, including the following:

• Preparation for a hospital visit – Children plan to visit a patient, and there is an expectation that the visit may be emotionally difficult.
• New diagnosis – The patient or family would like support explaining a new diagnosis to children.
• Change in quality of life – The patient’s diagnosis or condition is causing changes in how the patient will interact with the children in the hospital or upon discharge at home.
• End of life – The patient has been told treatment is no longer working and death is expected.
• Patient support in talking to children – The patient or caregiver would like support in navigating difficult discussions with children related to medical diagnoses or treatment.
• Emotional support for the caregiver, patient or patient’s children – Someone involved needs emotional support processing information related to the medical diagnosis and treatment, as well as how it will impact children involved.

Collaboration is key to success

So far, the CoAPP has been very successful. Between June and December 2016, Child Life participated in 75 consults with ICU patients and families. They have helped children of all ages, whose concerns range from whether they can catch cancer to why a parent won’t survive. The CLS has many tools in her bag to help children adapt to the ICU environment, which can be overwhelming. For example, she might close the curtains between patients or lower the volume on machines that make noises, if it doesn’t compromise the patient.

Child Life has helped nurses and other caregivers, too. In December, a CLS attended a nursing class on end-of-life care to explain the CoAPP. In addition, the CLS plans to participate in Nursing Grand Rounds and provide tips and tools for helping patients, children and their families in various situations.

“This is a tough population, but the service is needed,” says Sonnhalter. “And the work is definitely rewarding.”

Cook adds that getting the program off the ground wouldn’t have been possible without teamwork between nursing and Child Life. “Shannon and I were able to collaborate together, across professional lines, for the sole interest of our patients and their families,” she says. “You can make a tremendous impact when you’re willing to do that.”

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