Perceptions of caregivers and adolescents/young adults with cystic fibrosis regarding health care transition readiness during the COVID-19 pandemic: A qualitative study

Abstract

Purpose

Medical advances have increased the life expectancy of adolescents and young adults (AYA) with cystic fibrosis (CF) and importance of high-quality health care transitions (HCT) from pediatric-to-adult focused health care. The purpose of this study was to describe perceptions of HCT readiness among caregivers and AYA with CF during the COVID-19 pandemic.

Design and methods

Using a qualitative descriptive design, caregivers and AYA aged 12–21 years old were recruited from three large CF care centers across the eastern U.S. Data were collected using an online questionnaire with open ended and closed ended questions. Survey topics were: perceptions of HCT readiness, actions to prepare for HCT, and the impact of COVID-19. Results were interpreted using an adapted framework of the Health Care Transition Research Consortium Model and qualitative content analysis.

Results

The sample included 73 caregivers (62 mothers) and 34 AYA (24 female, mean age 15.5 years). Three attributes of HCT readiness were identified from caregiver and AYA perceptions: (1) strong concerns that AYA lacked readiness to manage self-care needs in the future, (2) gaps in resources hindered ongoing efforts to enhance transition readiness, and (3) COVID changes created new barriers and facilitators to health care transition readiness.

Conclusions

Caregivers and AYA felt they lacked readiness for HCT, they worried about worsening outcomes in adult-focused care, and they were challenged by the onset of the COVID-19 pandemic.

Practical implications

These findings provide a solid description of perceived transition readiness during a pandemic that may enhance transitional care design.