Youth with cystic fibrosis must gradually assume considerable self-care management skills in order to optimize longevity and quality of life, and healthcare providers and caregivers play a role in youth gradually assuming these skills. The purpose of this study was to determine how youth with cystic fibrosis perceive their self-care management skills required for transition to adult healthcare, the relationship between age and skill acquisition, youth and caregiver congruence on perceived transition readiness, and frequency of transition discussion with provider. In this descriptive, correlational, cross-sectional design, 58 youth ages 14-22 rated their skill ability in managing cystic fibrosis using the Transition Readiness Assessment Questionnaire (TRAQ) during visits to the cystic fibrosis clinic. Using an adapted version of the questionnaire, the TRAQ-C, 52 caregivers also rated youth readiness to transition to determine congruence in self-care management ability. Five simple regressions were calculated to determine age effects for the self-care management skills. Independent t-tests were used to compare mean scores of youth and caregiver perceptions of self-care management skills. Age predicted youth perception of readiness for self-care management skills. Youth scored significantly higher than their caregivers did in perception of self-care skill management. Study findings suggest that preparation for transition to adult care should begin at an earlier age to prepare youth to assume self-care. Including transition discussion with youth and caregiver assessments using questionnaires such as the TRAQ and TRAQ-C may guide learning of skills and timing of transition to adult health care.
Doctor of Philosophy (Ph.D.)
College of Nursing
Length of Campus-only Access
Doctoral Dissertation (Open Access)
Lapp, Valerie, "Perceived readiness to transition to adult health care for youth with cystic fibrosis and congruence with their caregivers' views" (2016). Electronic Theses and Dissertations. 4923.