Community-Engaged Research in Psychological Interventions for Pediatric Sickle Cell Disease: A Scoping Review

Introduction: Involving those with lived experience in the design and implementation of interventions improves the quality of life and health outcomes and is imperative, as engagement can improve the relevance, reach and effectiveness of interventions. Although there has been a growing call to enhance the use of community-engaged research (CEnR) methods, it remains uncertain how extensively these methods are being adopted and what the quality of the resulting research is.

The aim of this scoping review was to identify and describe the CEnR methods used in the development and evaluation of self-management interventions for pediatric SCD.

Methods: We conducted a systematic search of three databases (PubMed, Scopus, and PsychInfo). All titles, abstracts, and full texts for papers that met criteria were independently reviewed by two members of the research team. Data were extracted from articles that met inclusion criteria: (1) psychological intervention for (2) infants, children, adolescents, and youth adults (3) living with SCD (4) that used CEnR methods.

Results: The search yielded 236 original articles, of which eight met the inclusion criteria. These articles showed varying levels of involvement of community collaborators (patients, families, and community-based organizations) across research phases. Notable gaps in the literature were: 1) few studies reported utilizing CEnR methods, 2) a lack of consensus in language/terms used to describe CEnR methods, 3) limited demographic data about community collaborators, and 4) a lack of description of CEnR frameworks guiding intervention development and evaluation.

Conclusions: This scoping review found that most self-management intervention studies for youth with SCD failed to describe CEnR methods in a way that would facilitate reproducibility or evaluation of the quality of the research. Given the increased focus on the use of CEnR methods it will be important to develop reporting standards (e.g., for demographic information, frameworks, steps of CEnR methods) and use common terms/keywords to increase clarity and translatability. By adhering to these recommendations for improving the use and reporting of CEnR methods, we can enhance the effectiveness of patient self-management interventions, ultimately leading to better health outcomes for youth living with SCD.

Hood:Genomics England: Consultancy. Crosby:Novo Nordisk (Forma Therapeutics): Membership on an entity's Board of Directors or advisory committees; Sanofi Genzyme: Membership on an entity's Board of Directors or advisory committees; Sobi: Membership on an entity's Board of Directors or advisory committees; Takeda: Membership on an entity's Board of Directors or advisory committees; Professional Resource Exchange: Patents & Royalties; Novartis: Honoraria.