How Do Youth With Cystic Fibrosis Perceive Their Readiness To Transition To Adult Healthcare Compared To Their Caregivers' Views?

Keywords

Cystic fibrosis; Self-care management; Transition readiness; Transition to adult care; Youth

Abstract

Purpose: To describe how perceived stages of change for self-care management skills varies by age in youth with cystic fibrosis in preparation for transition to adult healthcare, to compare caregiver perception of youth readiness for self-care, and age/frequency of transition discussion with provider. Design and Methods: The Transition Readiness Assessment Questionnaire and a modified version (TRAQ-C) for caregivers were used for data collection. Descriptive statistics, simple linear regression, and t-tests were employed. Results: Regression equations suggest that age predicts youth perception of self-care management skill in all five domains on the TRAQ (p ≤ .009). A paired t-test compared the overall TRAQ and TRAQ-C mean scores between dyads. Youth rated themselves significantly higher in perception of self-care skill management (m = 3.187, sd = 0.769) than caregivers (m = 2.490, sd = 0.788; t = 7.408, df = 51, p < .001). Sixteen was the average age of transition discussion for both youth and caregiver. Reported frequency of discussion varied considerably. Conclusions: Although increasing age predicts perception of self-care management, many youth age 18–22 were still only contemplating or starting to learn skills. Skill level perceptions between youth and caregiver differed, but scores from all self-care management domains followed a similar trend. Discussions with providers began later than guidelines recommend and were often not recognized as such by youth. Practice Implications: Results underscore the importance of beginning transition discussion and skill evaluation in youth with cystic fibrosis at an early age, incorporating caregivers' perception in the process.

Publication Date

11-1-2018

Publication Title

Journal of Pediatric Nursing

Volume

43

Number of Pages

104-110

Document Type

Article

Personal Identifier

scopus

DOI Link

https://doi.org/10.1016/j.pedn.2018.09.012

Socpus ID

85054027603 (Scopus)

Source API URL

https://api.elsevier.com/content/abstract/scopus_id/85054027603

This document is currently not available here.

Share

COinS