(325) Outpatient Child Life: Integrating play, coping strategies, and diagnosis education into a Pediatric Cystic Fibrosis Center

Background: A small Midwest Cystic Fibrosis (CF) Center gained child life support in fall of 2016, however availability was limited due to sharing FTE between 31 outpatient sub-specialty clinics. Child life involvement was often restricted to immediate stressors (i.e. throat swabs, blood draws, 1st PFTs, etc.) in a reactive approach. However, in summer of 2020, the child life team added FTE, increasing the ability for a primary child life specialist (CLS) to be more integrated into the clinic workflow. Partnering with the nurse care coordinators, a comprehensive, proactive approach to the integration of child life was formed, focusing on full scope of practice.

Methods: CF RN care coordinators collaborated with the CLS to discuss the goal of integration while understanding known patient stressors, and optimal developmental and coping goals for patients ages 0-18 and their siblings. We also determined ways to reduce disruption to clinic workflow while leveraging scheduling and increasing awareness of scope of practice among both the interdisciplinary team and patients and families. The CLS also obtained feedback from the family advisory committee engrained in clinic along with hosting a booth at the center’s annual CF family event that targets caregivers of pediatric CF patients. Throughout each of these formative actions, the primary focus remained on collaboration with the interdisciplinary team, employing the full scope of practice of the CLS, mitigating logistical barriers, and optimizing patient experience and satisfaction.

Results: The current plan (see attached table) is based on identified time points where developmentally appropriate interventions and resources are implemented in a stepwise fashion, building upon itself. For each patient or family member interventions are individualized based on coping and learning needs or developmental differences, and are completed by the CLS based on professional judgment and after assessment and rapport is built. As seen in the table, the scope of practice includes: preparation for procedures or changes in the plan of care, procedural support, creation of coping plans for in-clinic and at-home care routines or events, educational activities and resources (i.e. making slime to learn about mucus, word searches about medications, etc.), therapeutic activities to support the emotional processing of chronic illness, providing information on typical growth and development to caregivers, and facilitating developmentally appropriate transition readiness goals through CF Rise materials. During the COVID global pandemic, changes to outpatient clinic, including the addition of virtual appointments, allowed the CLS to expand practice further. In these video appointments, the teen patients appear to be more engaging and talkative, allowing the CLS to better assess coping, adherence, and transition readiness in a relaxed environment more suited to their developmental needs. Based on the success of having video appointments with adolescent patients without caregivers present, the CLS and the RN care coordinators agreed to include these moving forward.

Conclusions: The integration of the CLS at full scope of practice results in benefits not only to the patients and families, but also to the interdisciplinary team and clinic as a whole. By taking a proactive and preventative approach, coping and psychosocial concerns can be navigated throughout the developmental stages with increased stability and emotional safety for the patients and their families.

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