Formative research to design a culturally-appropriate cancer clinical trial education program to increase participation of African American and Latino communities.
Adult
Black or African American
/ education
Aged
Clinical Trials as Topic
/ psychology
Community-Based Participatory Research
Culturally Competent Care
/ methods
Female
Focus Groups
Health Education
/ methods
Hispanic or Latino
/ education
Humans
Male
Middle Aged
Neoplasms
Qualitative Research
Research Subjects
/ education
African Americans
Cancer
Clinical trials
Community health educators (CHEs)
Disparities
Education
Latinos
Recruitment
Journal
BMC public health
ISSN: 1471-2458
Titre abrégé: BMC Public Health
Pays: England
ID NLM: 100968562
Informations de publication
Date de publication:
03 Jun 2020
03 Jun 2020
Historique:
received:
05
12
2019
accepted:
17
05
2020
entrez:
5
6
2020
pubmed:
5
6
2020
medline:
5
11
2020
Statut:
epublish
Résumé
Addressing knowledge deficiencies about cancer clinical trials and biospecimen donation can potentially improve participation among racial and ethnic minorities. This paper describes the formative research process used to design a culturally-appropriate cancer clinical trials education program for African American and Latino communities. We characterized community member feedback and its integration into the program. We incorporated three engagement approaches into the formative research process to iteratively develop the program: including community-based organization (CBO) leaders as research team members, conducting focus groups and cognitive interviews with community members as reviewers/consultants, and interacting with two community advisory groups. An iterative-deductive approach was used to analyze focus group data. Qualitative data from advisory groups and community members were compiled and used to finalize the program. Focus group themes were: 1) Community Perspectives on Overall Presentation; 2) Community Opinions and Questions on the Content of the Presentation; 3) Culturally Specific Issues to Participation in Cancer Clinical Trials; 4) Barriers to Clinical Trial Participation; and 5) Perspectives of Community Health Educators. Feedback was documented during reviews by scientific experts and community members with suggestions to ensure cultural appropriateness using peripheral, evidential, linguistic, sociocultural strategies, and constituent-involving. The final program consisted of two versions (English and Spanish) of a culturally-appropriate slide presentation with speaker notes and videos representing community member and researcher testimonials. Incorporating multiple community engagement approaches into formative research processes can facilitate the inclusion of multiple community perspectives and enhance the cultural-appropriateness of the programs designed to promote cancer clinical trial participation among African Americans and Latinos.
Sections du résumé
BACKGROUND
BACKGROUND
Addressing knowledge deficiencies about cancer clinical trials and biospecimen donation can potentially improve participation among racial and ethnic minorities. This paper describes the formative research process used to design a culturally-appropriate cancer clinical trials education program for African American and Latino communities. We characterized community member feedback and its integration into the program.
METHODS
METHODS
We incorporated three engagement approaches into the formative research process to iteratively develop the program: including community-based organization (CBO) leaders as research team members, conducting focus groups and cognitive interviews with community members as reviewers/consultants, and interacting with two community advisory groups. An iterative-deductive approach was used to analyze focus group data. Qualitative data from advisory groups and community members were compiled and used to finalize the program.
RESULTS
RESULTS
Focus group themes were: 1) Community Perspectives on Overall Presentation; 2) Community Opinions and Questions on the Content of the Presentation; 3) Culturally Specific Issues to Participation in Cancer Clinical Trials; 4) Barriers to Clinical Trial Participation; and 5) Perspectives of Community Health Educators. Feedback was documented during reviews by scientific experts and community members with suggestions to ensure cultural appropriateness using peripheral, evidential, linguistic, sociocultural strategies, and constituent-involving. The final program consisted of two versions (English and Spanish) of a culturally-appropriate slide presentation with speaker notes and videos representing community member and researcher testimonials.
CONCLUSIONS
CONCLUSIONS
Incorporating multiple community engagement approaches into formative research processes can facilitate the inclusion of multiple community perspectives and enhance the cultural-appropriateness of the programs designed to promote cancer clinical trial participation among African Americans and Latinos.
Identifiants
pubmed: 32493245
doi: 10.1186/s12889-020-08939-4
pii: 10.1186/s12889-020-08939-4
pmc: PMC7268329
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
840Subventions
Organisme : NIH HHS
ID : UL1 TR000445
Pays : United States
Organisme : NCI NIH HHS
ID : P30 CA068485
Pays : United States
Organisme : AHRQ HHS
ID : T32 HS026122
Pays : United States
Organisme : NCI NIH HHS
ID : U54 CA163072
Pays : United States
Organisme : NCI NIH HHS
ID : U54 CA163066
Pays : United States
Organisme : National Institute of Health
ID : P30 CA068485-23S5
Organisme : NCI NIH HHS
ID : U54 CA163069
Pays : United States
Organisme : NIH HHS
ID : UL1 RR024975
Pays : United States
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