Mapping Randomized Controlled Trials of Family- and Community-Centered Healthcare Interventions for Pediatric Asthma, Type 1 Diabetes, or Juvenile Idiopathic Arthritis—A Scoping Review

Abstract

Highlights What are the main findings? Family- and community-centered care is mainly delivered through short-term, multicomponent interventions, with a strong emphasis on populations with asthma. While the interventions included typically resulted in disease-related and clinical outcomes, outcomes related to participation in everyday life, school functioning, and family well-being were less frequently considered. What are the implications of the main findings? The findings highlight the need for broader, diagnosis-inclusive approaches and stronger involvement of community stakeholders and policymakers in future family- and community-centered interventions. Evaluation of the interventions’ societal impacts and mechanisms of change will improve the evidence base of family- and community-centered care. Abstract Background: Family and community are key support sources for children and adolescents with chronic illnesses. This study aimed to map the characteristics of family- and community-centered interventions for pediatric chronic somatic disease. Methods: This scoping review followed the Arksey and O’Malley guidance. Through a systematic search in Medline (PubMed), EMBASE, PsycINFO, Cochrane, and CINAHL, free web sources, the gray literature, and citations, we identified publications of randomized controlled trials evaluating family- and community-centered interventions for children aged 0–17 years with asthma, type 1 diabetes, or juvenile idiopathic arthritis. Two or more reviewers independently conducted screening, verification of machine-assisted data extraction, risk-of-bias assessment, and narrative synthesis. Results: Of 7285 items identified, we included 76 publications on 71 interventions comprising 16,342 participants (median n = 157; IQR 81–303; range 12–1316) with a median age of 9 (range 0–19) years. Interventions incorporating educational, psychosocial, and care-coordination elements targeted asthma (68%), type 1 diabetes (29%), and juvenile idiopathic arthritis (3%) that had lasted ≤6 months (63%) and were delivered in person (83%) by healthcare professionals (62%). Primary outcomes included symptom burden (44%), coping with the disease (24%), disease control (20%), activity participation, child psychosocial functioning, medication or healthcare use (18% each), or child quality of life (17%). Usual care (59%) and other treatment (31%) were frequent comparators. Conclusions: Most interventions were short-term, healthcare professional-led multicomponent programs compared with usual care. Primary outcomes targeted symptom management and disease control. Mixed diagnoses, peer support, family activities, and non-professional delivery were uncommon. This study identified gaps in diagnosis coverage and the need for additional high-quality studies.