Healthcare transition readiness of families of youth with cystic fibrosis during COVID-19: A correlational multicenter analysis

Tyra C. Girdwood; Kirsten Kainz; Susan G. Silva; Jennifer L. Goralski; Maria E.Díaz-González de Ferris; Mary R. Lynn; Elisabeth P. Dellon; Samya Z. Nasr; Ahmet Uluer; Mark P. Toles

Health Care Transitions (Jan 2024)

Healthcare transition readiness of families of youth with cystic fibrosis during COVID-19: A correlational multicenter analysis

Tyra C. Girdwood,
Kirsten Kainz,
Susan G. Silva,
Jennifer L. Goralski,
Maria E.Díaz-González de Ferris,
Mary R. Lynn,
Elisabeth P. Dellon,
Samya Z. Nasr,
Ahmet Uluer,
Mark P. Toles

Affiliations

Tyra C. Girdwood: University of North Carolina at Chapel Hill, School of Nursing, 120 North Medical Dr., Chapel Hill, NC 27599, USA; Duke University, School of Nursing, 307 Trent Dr, Durham, NC 27710, USA; Correspondence to: Duke University, School of Nursing, Durham, North Carolina, USA 307 Trent Dr, Durham, NC 27710, USA.
Kirsten Kainz: University of North Carolina at Chapel Hill, School of Social Work, 325 Pittsboro St Ste 3550, Chapel Hill, NC 27516, USA
Susan G. Silva: Duke University, School of Nursing, 307 Trent Dr, Durham, NC 27710, USA
Jennifer L. Goralski: University of North Carolina at Chapel Hill, School of Medicine, 321 South Columbia St., Chapel Hill, NC 27514, USA
Maria E.Díaz-González de Ferris: University of North Carolina at Chapel Hill, School of Medicine, 321 South Columbia St., Chapel Hill, NC 27514, USA
Mary R. Lynn: University of North Carolina at Chapel Hill, School of Nursing, 120 North Medical Dr., Chapel Hill, NC 27599, USA
Elisabeth P. Dellon: University of North Carolina at Chapel Hill, School of Medicine, 321 South Columbia St., Chapel Hill, NC 27514, USA
Samya Z. Nasr: University of Michigan, Michigan Medicine, 1500 E Medical Center Dr, Ann Arbor, MI 48109, USA
Ahmet Uluer: Harvard Medical School, Boston Children’s Hospital, 300 Longwood Avenue, Boston, MA 02115, USA
Mark P. Toles: University of North Carolina at Chapel Hill, School of Nursing, 120 North Medical Dr., Chapel Hill, NC 27599, USA

Journal volume & issue: Vol. 2
p. 100065

Abstract

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Background: Enhancing family readiness for the healthcare transition (HCT) to adult-focused care can help adolescents and young adults (AYA) thrive in adulthood. We aimed to explore modifiable and non-modifiable individual, family, and healthcare factors associated with HCT readiness of AYA among families of AYA with cystic fibrosis (CF) during COVID-19. Methods: A multi-site, cross-sectional design was used and an online survey was deployed among families and their AYA from three US pediatric CF centers. The STARx Transition Readiness Questionnaire assessed caregiver- and AYA-perceived HCT readiness of AYA. Results: Caregivers (N = 71) and their AYA with CF (N = 33, aged 12–21 years) perceived moderately high HCT readiness of AYA. Caregiver resilience was a significant (p = 0.006), family-level factor correlated with caregiver-perceived HCT readiness. Conclusions: Families perceived similar levels of AYA readiness for adult-focused care. Caregiver resilience is an important, modifiable family-level factor for targeted interdisciplinary interventions aimed at enhancing HCT processes during COVID-19.

Published in Health Care Transitions

ISSN: 2949-9232 (Online)
Publisher: Elsevier
Country of publisher: United States
LCC subjects: Medicine
Website: https://www.sciencedirect.com/journal/health-care-transitions

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Abstract

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