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Community-engaged research in psychological interventions for pediatric sickle cell disease: a scoping review
Bridget N Murphy1, Kristine Durkin2, Desireé N Williford1,3
1Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States.
Objective:
The aim of this scoping review was to identify and describe the community-engaged research (CEnR) methods used in the development and evaluation of psychological interventions for pediatric sickle cell disease (SCD).
Methods:
We conducted a systematic search of three databases in April 2024 (PubMed, Scopus, and PsycINFO). The review was registered with Open Science Framework (DOI: 10.17605/OSF.IO/956AV). All titles, abstracts, and full texts for papers that appeared to meet criteria were independently reviewed by two members of the research team. Inclusion criteria were pediatric or young adult age and use of CEnR for a psychological SCD intervention. Data were extracted from articles meeting these criteria.
Results:
The search yielded 235 original articles, of which eight met the inclusion criteria. These articles showed that the involvement levels of community collaborators (patients, families, and community-based organizations) varied across research phases. Notable gaps in the literature were: (1) few studies reported utilizing CEnR methods, (2) variability 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 few studies describing the use of CEnR methods in a way that would facilitate reproducibility. Recommendations include using MeSH CEnR keywords, identifying CEnR methods and frameworks, and including specific information about community when possible (e.g., demographic information, meeting frequency, etc.).
