Formative research to design a culturally-appropriate cancer clinical trial education program to increase participation of African American and Latino communities
Abstract 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 edu...
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| Format: | Article |
| Language: | English |
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BMC
2020-06-01
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| Series: | BMC Public Health |
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| Online Access: | http://link.springer.com/article/10.1186/s12889-020-08939-4 |
| _version_ | 1818255872934019072 |
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| author | Jennifer Cunningham-Erves Claudia Barajas Tilicia L. Mayo-Gamble Caree R. McAfee Pamela C. Hull Maureen Sanderson Juan Canedo Katina Beard Consuelo H. Wilkins |
| author_facet | Jennifer Cunningham-Erves Claudia Barajas Tilicia L. Mayo-Gamble Caree R. McAfee Pamela C. Hull Maureen Sanderson Juan Canedo Katina Beard Consuelo H. Wilkins |
| author_sort | Jennifer Cunningham-Erves |
| collection | DOAJ |
| description | Abstract 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 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 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 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. |
| first_indexed | 2024-12-12T17:18:46Z |
| format | Article |
| id | doaj.art-8a952d4013f6479b8ab82098df789bf1 |
| institution | Directory Open Access Journal |
| issn | 1471-2458 |
| language | English |
| last_indexed | 2024-12-12T17:18:46Z |
| publishDate | 2020-06-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Public Health |
| spelling | doaj.art-8a952d4013f6479b8ab82098df789bf12022-12-22T00:17:43ZengBMCBMC Public Health1471-24582020-06-0120111410.1186/s12889-020-08939-4Formative research to design a culturally-appropriate cancer clinical trial education program to increase participation of African American and Latino communitiesJennifer Cunningham-Erves0Claudia Barajas1Tilicia L. Mayo-Gamble2Caree R. McAfee3Pamela C. Hull4Maureen Sanderson5Juan Canedo6Katina Beard7Consuelo H. Wilkins8Department of Internal Medicine, Meharry Medical CollegeVanderbilt Ingram Cancer Center, Vanderbilt University Medical CenterDepartment of Health Policy and Community Health, Georgia Southern UniversityDivision of Epidemiology, Department of Medicine, Vanderbilt University Medical CenterVanderbilt Ingram Cancer Center, Vanderbilt University Medical CenterDepartment of Family and Community Medicine, Meharry Medical CollegeProgreso Community CenterMatthew Walker Community Health CenterDepartment of Internal Medicine, Meharry Medical CollegeAbstract 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 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 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 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.http://link.springer.com/article/10.1186/s12889-020-08939-4CancerDisparitiesClinical trialsAfrican AmericansLatinosEducation |
| spellingShingle | Jennifer Cunningham-Erves Claudia Barajas Tilicia L. Mayo-Gamble Caree R. McAfee Pamela C. Hull Maureen Sanderson Juan Canedo Katina Beard Consuelo H. Wilkins Formative research to design a culturally-appropriate cancer clinical trial education program to increase participation of African American and Latino communities BMC Public Health Cancer Disparities Clinical trials African Americans Latinos Education |
| title | Formative research to design a culturally-appropriate cancer clinical trial education program to increase participation of African American and Latino communities |
| title_full | Formative research to design a culturally-appropriate cancer clinical trial education program to increase participation of African American and Latino communities |
| title_fullStr | Formative research to design a culturally-appropriate cancer clinical trial education program to increase participation of African American and Latino communities |
| title_full_unstemmed | Formative research to design a culturally-appropriate cancer clinical trial education program to increase participation of African American and Latino communities |
| title_short | Formative research to design a culturally-appropriate cancer clinical trial education program to increase participation of African American and Latino communities |
| title_sort | formative research to design a culturally appropriate cancer clinical trial education program to increase participation of african american and latino communities |
| topic | Cancer Disparities Clinical trials African Americans Latinos Education |
| url | http://link.springer.com/article/10.1186/s12889-020-08939-4 |
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