Highlights
- •Healthcare transition experiences of participants varied from smooth to abrupt
- •Participants desired information about adult care and control over their transition
- •Involving youth in decisions regarding their transition is recommended
- •Early transfer of cystic fibrosis self-management responsibility is recommended
Abstract
Purpose
The experience of healthcare transition from pediatric to adult care in cystic fibrosis
(CF) remains poorly understood, particularly among racially and ethnically diverse
adolescents and young adults (AYAs) with CF. The objective of this qualitative study
was to explore the perspectives of a diverse sample of AYAs with CF at one urban academic
medical center regarding healthcare transition.
Design and methods
Guided by qualitative descriptive methodology, we purposively selected AYAs who represented
the pre and post transition experience: some AYAs had experienced the transition preparation
program CF R.I.S.E. Demographic information and responsibility for self-management
behaviors were collected using an online survey. Semi-structured video interviews
were conducted following an iterative interview guide. A codebook directed inductive
coding. QSR NVivo Version 12 software was used to organize the data.
Results
12 AYAs with CF were enrolled (25% female, 25% Black AYA, 33% Hispanic/Latina/o AYA,
50% White AYA; mean age 20.8 years). Three themes were identified: independent care of the whole self, preparing for change and the unknown and transition experiences vary.
Conclusions
Not all participants experienced a smooth transition. Participants identified suggestions
for the development of transition preparation interventions, specifically around involving
AYAs in transition decisions and beginning transition preparation early in adolescence.
Practice implications
Participants expressed uncertainty about transition when they felt little control
over the process or lacked sufficient information about adult care. Therefore, comprehensive
early transition preparation for all AYAs with CF with a focus on involving AYAs in
transition decisions is recommended.
Keywords
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Article info
Publication history
Published online: March 30, 2022
Accepted:
March 20,
2022
Received in revised form:
March 18,
2022
Received:
November 15,
2021
Identification
Copyright
© 2022 Elsevier Inc. All rights reserved.
