ABSTRACT
Background: A small Midwest cystic fibrosis (CF) center gained child life support in fall of 2016, but availability was limited due to sharing full-time equivalents (FTEs) between 31 outpatient subspecialty clinics. Child life involvementwas often restricted to immediate stressors (e.g., throat swabs, blood draws, first pulmonary function tests) in a reactive approach, but in the summer of 2020, the child life team added FTEs, 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. Method(s): CFregistered nurse care coordinators collaborated with the CLSto discuss the goal of integration while understanding knownpatient stressors and optimal developmental and coping goals for patients younger than 19 and their siblings. We also determined ways to reduce disruption to clinic workflowwhile leveraging scheduling and increasing awareness of scope of practice of the interdisciplinary team, 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 familyevent that targets caregivers of children with CF. Throughout each of these formative actions,(Figure Presented) Figure 1. : Child life integration protocol the primary focus was on collaboration with the interdisciplinary team, employing the full scope of practice of the CLS, mitigating logistical barriers, and optimizing patient experience and satisfaction. Result(s): The current plan (Figure 1) is based on identified time points where developmentally appropriate interventions and resources are implemented in a stepwise fashion, building upon itself. Interventions are individualized for each patient or family member 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. 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 (e.g., making slime to learn about mucus, word searches about medications), therapeutic activities to support emotional processing of chronic illness, providing information on typical growth and development to caregivers, and facilitating developmentally appropriate transition-readiness goals through CF R.I.S.E. materials. During the COVID global pandemic, changes to outpatient clinic, including addition of virtual appointments, allowed the CLS to expand practice further. In these video appointments, teen patients appear to be more engaging and talkative, allowing the CLS to better assess coping, adherence, and transition readiness in a relaxed Table 1. Two-way table depicting concordance between substance use and mental health screening results at same encounter. General Anxiety Disorder (GAD7) and Patient Health Questionnaire (PHQ9) results were aggregated such that a positive screening result on either was compared with neither being positive.(Table Presented) 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 registered nurse care coordinators agreed to include these moving forward. Conclusion(s): The integration of the CLS at full scope of practice benefits not only patients and families, but also 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 greater stability and emotional safety for patients and their familiesCopyright © 2022, European Cystic Fibrosis Society. All rights reserved