Community-engaged research in psychological interventions for pediatric sickle cell disease: a scoping review.
Bridget N Murphy, Kristine Durkin, Desire�� N Williford, Ariel O Blakey, Chloe Musa, Anna M Hood, Elizabeth L McQuaid, Idia Thurston, Malika Muhammad, Lori E Crosby
Author Information
Bridget N Murphy: Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States. ORCID
Kristine Durkin: Department of Psychiatry and Human Behavior, Alpert Medical School of Brown University , Providence, RI, United States. ORCID
Desire�� N Williford: Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States. ORCID
Ariel O Blakey: Department of Psychological and Brain Sciences, Boston University, Boston, MA, United States.
Chloe Musa: Division of Psychology and Mental Health, Manchester Centre for Health Psychology, University of Manchester, Manchester, United Kingdom.
Anna M Hood: Division of Psychology and Mental Health, Manchester Centre for Health Psychology, University of Manchester, Manchester, United Kingdom. ORCID
Elizabeth L McQuaid: Department of Psychiatry and Human Behavior, Alpert Medical School of Brown University , Providence, RI, United States. ORCID
Idia Thurston: Bouv�� College of Health Sciences and Institute for Health Equity and Social Justice Research, Northeastern University, Boston, MA, United States. ORCID
Malika Muhammad: Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States.
Lori E Crosby: Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States. ORCID
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.).
