Concept
adolescent chronic illness
Parents
Children
Collaborative ManagementHealthcare TransitionSelf-management
932
Publications
55.8K
Citations
2.5K
Authors
841
Institutions
Transition-Centered Family Self-Management
2014 - 2017
During 2014-2017, the period foregrounded transition in responsibility from parents to adolescents diagnosed with chronic illness within a developmental-systems framework, highlighting how families negotiate shifts in roles and timing of transfer. Self-management and treatment adherence emerged as central concerns, with investigators examining youth and parent perspectives, engagement strategies, and education designed to reduce treatment burden across conditions such as cystic fibrosis. Studies also foregrounded family systems and leadership in pediatric chronic illness care, applying family-centered care principles and adaptive leadership to balance caregiver duties with patient autonomy. Attention to quality of care, patient-centered measurement, and psychosocial determinants broadened the evaluative lens beyond clinical outcomes to well-being and daily functioning. System-level innovations and transition-focused education were identified as essential to align health-system practices with adolescent needs and family contexts.
• Theme 1 centers on the transition of health care responsibility from parents to adolescents with chronic illness, treated as a developmental-systems problem. It emphasizes balanced parental involvement, youth autonomy, and perceptions before/after transfer, across several works that examine how families navigate shifting roles [2], [3], [11], [10], [13].
• Theme 2 foregrounds self-management and treatment adherence under chronic illness burden, highlighting youth/parent perspectives, engagement strategies, and education to reduce treatment burden. It spans CF adherence, self-management programs, and mixed-method evaluations of engagement interventions [4], [6], [19], [18], [17].
• Theme 3 analyzes family systems and leadership in pediatric chronic illness care, drawing on MEND, adaptive leadership, and family-centered care models to balance caregiver roles, dynamics, and patient self-management [17], [14], [2], [3], [10].
• Theme 4 investigates quality of care, patient-centered measurement, and psychosocial aspects, using frameworks and mixed-methods to assess hospital care quality, determinants of care, and quality-of-life linkages [16], [9], [5], [7].
• Theme 5 addresses system-level innovations and education for pediatric chronic illness, including health-system transformations, transition-focused research, and education programs to prepare families and providers [8], [15], [11], [16], [20].
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