Perspectives of Adolescents and Young Adults With Sickle Cell Disease and Clinicians on Improving Transition Readiness With a Video Game Intervention.
J Pediatr Hematol Oncol
; 46(2): e147-e155, 2024 03 01.
Article
en En
| MEDLINE
| ID: mdl-38237001
ABSTRACT
We aimed to learn the experiences of clinicians and adolescents and young adults with sickle cell disease (AYA-SCD) with managing their disease at home and making medical decisions as they transition from pediatric to adult care, and their perceptions of a video game intervention to positively impact these skills. We conducted individual, semistructured interviews with patients (AYA-SCD ages 15 to 26 years) and clinicians who provide care to AYA-SCD at an urban, quaternary-care hospital. Interviews elicited patients' and clinicians' experiences with AYA-SCD, barriers and facilitators to successful home management, and their perspectives on shared decision-making and a video game intervention. To identify themes, we conducted an inductive analysis until data saturation was reached. Participants (16 patients and 21 clinicians) identified 4 main themes (1) self-efficacy as a critical skill for a successful transition from pediatric to adult care, (2) the importance of patient engagement in making medical decisions, (3) multilevel determinants of optimal self-efficacy and patient engagement, and (4) support for a video game intervention which, by targeting potential determinants of AYA-SCD achieving optimal self-efficacy and engagement in decision-making, may improve these important skills.
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Transición a la Atención de Adultos
/
Anemia de Células Falciformes
Tipo de estudio:
Prognostic_studies
/
Qualitative_research
Límite:
Adolescent
/
Adult
/
Child
/
Humans
Idioma:
En
Revista:
J Pediatr Hematol Oncol
Asunto de la revista:
HEMATOLOGIA
/
NEOPLASIAS
/
PEDIATRIA
Año:
2024
Tipo del documento:
Article
Pais de publicación:
Estados Unidos