Transitioning Kids with Cystic Fibrosis to Independent Care (2011)

Undergraduate: Micker Samios

Faculty Advisor: Diane Yorke
Department: Nursing

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The advances in treatments for cystic fibrosis (CF) have improved the life expectancy of patients with CF and most are living well into adulthood. Children with (CF) are usually diagnosed in infancy and subjected to a challenging daily treatment regime that includes complex medications, extensive chest physiotherapy, and frequent hospitalizations. Ordinarily, the transition from dependent to independent care occurs throughout adolescence, but for many children with CF this transition is not addressed until they reach their late teens (Flume, 2009). The purpose of this project was to develop educational material to help younger children with CF, ages 5-8, to take a more active role in their care. This material focused on common medications and treatments that are required for CF patients. The educational material was developed with the assistance of nurses caring for and specializing in CF patient care. These nurses have a unique perspective for the design of educational material: they have knowledge of the overall disease process, can identify patients’ knowledge gaps, and have experience with education of the target population. Nurses participated in focus groups where they provided feedback on the educational material. Their input along with a health educator was used to redesign and improve the educational material. This material may be used to foster children’s understanding of CF and facilitate their transition to independent care.