Developing a Problem-solving Intervention to Improve Self-Management and Transition Readiness in Adolescents with Sickle Cell Disease
- Resource Type
- Authors
- Amy Sobota; Nicole Melita; Patricia L. Kavanagh; Yaminette Diaz-Linhart
- Source
- Journal of Pediatric Nursing. 46:26-32
- Subject
- Male
Transition to Adult Care
medicine.medical_specialty
Adolescent
Transition readiness
Psychological intervention
Anemia, Sickle Cell
Disease
Pediatrics
Grounded theory
03 medical and health sciences
0302 clinical medicine
030225 pediatrics
Intervention (counseling)
medicine
Humans
Young adult
Problem Solving
Self-management
030504 nursing
Self-Management
Focus Groups
Focus group
humanities
Family medicine
Female
0305 other medical science
Psychology
- Language
- ISSN
- 0882-5963
Purpose Adolescents and young adults (AYA) with sickle cell disease (SCD) are at risk for serious complications including increased morbidity and early mortality during their transition from pediatric to adult care. Self-management support may help improve transition outcomes in this vulnerable population. Interventions based on teaching problem solving skills have been shown to improve adherence to therapy for AYA with other chronic disease and is a promising intervention in SCD. We sought patient and parent perspectives on improving self-management and input on the development of a problem-solving education (PSE) intervention. Design and methods We held focus groups with AYA with SCD and caregivers to discuss barriers and facilitators of self-management, acceptability of PSE and intervention content and delivery. Results Five focus groups were held with AYA (n = 17) and caregivers (n = 15). Groups participated jointly to discuss self-management and then separately to discuss PSE. Data were analyzed using grounded theory and double-coded until thematic saturation was achieved. Conclusions Both groups endorsed PSE as an acceptable intervention. Barriers to self-management included wanting to fit in with peers (AYA) and trouble letting go (parents); facilitators included having a regular routine (AYA) and sharing responsibility (parents). Participants suggested meeting in small groups for PSE sessions rather than individually and adding group sessions for parents. Practical implications Understanding AYA and caregivers' perceptions of barriers and facilitators of transition in SCD can help us better prepare AYA for transition. The specifics both groups identified as helpful will guide intervention development.