26 Moving Toward Patient Autonomy: A Case Study in Communication in Adolescent Cystic Fibrosis Care Amanda J. Young, PhD University of Memphis, Memphis, TN Loel Kim, PhD University of Memphis, Memphis, TN ABSTRACT As life expectancy for patients with cystic fibrosis (CF) and other life-impacting chronic illnesses continues to increase, more pediatric patients will transition to adult care. As part of the complex shift in this transition, patients become legally, institutionally, and socially expected to assume a larger role in their own healthcare, which requires more sophisticated communication skills. This article reports a single case study in which two interview participants, a child life specialist and a 16-year-old CF patient, report the same incident through their independent perspectives. In responding to a question about failed communication, both participants independently related the story of the patient trying to persuade doctors to remove her gastric feeding tube. We analyzed their narrative of this series of events using a model called collaborative interpretation (CI), which posits that both patients and providers are experts and joint problem solvers. Our conclusions indicate that child life specialists can serve as models and educators to help adolescent patients master key communication skills as they become co-agents in managing their healthcare.
Each issue of the ACLP Bulletin (through Fall 2019) featured a Child Life Focus article, peer-reviewed in-depth research. These articles are available here. Individual Pricing Non-Members: $15 ACLP Members: Free! PDUs The PDUs earned (.5 per article) from reading a Focus article and successfully completing the accompanying quiz are considered Independent Learning. There is a 10 PDU maximum limit for this category in the 5-year certification cycle.