Table 1 Summary of Suggestions, Changes, and Barriers to Research Culturally-Targeted at Each Phase of the Adaptation Process
Phase II: Focus Groups | |||
Cultural Areas for Change | Suggestions | Changes | Targeted Barriers |
Peripheral | Increase font size on images providing cancer statistics. (AA) | Removed those images and added images with larger font and fewer statistics | -None |
Pictures need to show clinical trials are for everyone not a specific race/ethnicity (AA) | Pictures were changed to reflect all races and ethnicities | -In ability to understand information on research -Lack of information on the research process | |
Change slide background color (AA) | Changed slide background color from light green to white | -None | |
Increase clarity in presentation (AA, L) | Layout of slides modified to improve flow of presentation; Removed content outlining purpose of presentation; Added two takeaways to presentation | -Inability to understand information on research | |
Evidential | Cancer statistics should be presented by race/ethnicity and gender (AA) | Changed to overall cancer statistics for all and top cancers by race/ethnicity and gender | -Lack of information on the research process |
Linguistic/Evidential | Add a video on community member experience in cancer clinical trial participation (L) | Developed videos of community members (1AA, 1 L) telling their experience in participating in a cancer clinical trial. | -Lack of information on the research process -Fear of research methods |
Need researcher perspective on research process (AA) | Developed videos of researchers (1 AA, 1 L) telling the importance of research. | -Lack of information on the research process | |
Linguistic | Increase clarity of who could participate in clinical trials (CHE) | Added statement that EVERYONE could participate with examples | -Lack of information on the research process |
Reduce big words to simpler language (AA) | Added definitions to presenters notes and/or replaced with simple words | -Inability to understand information on research | |
Sociocultural/Linguistic | Offer presentation in Spanish (L) | Translated the English version into a Spanish version | -Inability to understand information on research |
Sociocultural | Provide handouts on presentation and information on ways to identify clinical trials (L) | Added handouts during presentation and added information to resource slide on where to find clinical trials | -Lack of information on the research process -Limited access to clinical trials and healthcare |
Add information culturally appealing to the community (AA, L) | -Add content on cancer (e.g., definition, etiology, risk factors), clinical trials (e.g., phases of trials and process at each phase, benefits, costs, sources to get information or register for clinical trials), and protections (e.g., Belmont Principles) | -Lack of information on the research process | |
Phase III: Scientific Review | |||
Cultural Areas for Change | Suggestions | Changes | Targeted Barriers |
Peripheral | No Suggestions | None | -None |
Evidential | Possible barriers to add include injury, travel and lodging costs, and costs to those uninsured | Added these barriers to slides along with information on patient assistance programs | -Lack of information on the research process -Concerns regarding privacy and costs |
Update presenters’ notes with information on genetic testing in biospecimens | Updated presenters’ notes with information provided on genetic testing in biospecimens | -Lack of information on the research process -Fear of research methods | |
Linguistic | Increase clarity on cancer treatment | Added “Cancer is more than one disease” to clarify that more than one treatment is needed to prevent cancer | -Lack of information on cancer |
Remove “safely” from “How to safely participate in clinical trials to improve cancer treatment options for your community.” | Removed the slide | -None | |
Sociocultural | No Suggestions | None | -None |
Phase III: Reading Level Assessment | |||
Cultural Areas for Change | Suggestions | Changes | Targeted Barriers |
Peripheral/Linguistic | Add visuals to compliment topic | Identified topic-appropriate visuals | -Lack of information on the research process -Fear of research methods |
Evidential | Clarify difference between patient care versus research costs | Added examples of patient care and research costs | -Lack of information on the research process |
Update presenters notes to include additional information on clinical trial process | Added information on what happens at each phase of clinical trials to presenter notes | -Distrust in doctors/researchers -Lack of information on the research process -Fear of research methods | |
Linguistic | Use simpler term for clinical trial phases | Changed to “how a clinical trial gets to you” | -Lack of information on the research process -Fear of research methods |
Phase III: Cognitive Interviews | |||
Cultural Areas for Change | Suggestions | Changes | Targeted Barriers |
Peripheral | Aesthetics of video testimony could be improved (AA) | Decided not to refilm the video because the suggestion did not apply to the content | -Distrust in doctors/researchers -Lack of information on the research process -Fear of research methods |
Evidential | Consider listing risks of being in a clinical trial (AA) | Decided not to list risk because they can vary by clinical trial; added examples of risks for a specific clinical trial to presenter notes to use if asked | -Lack of information on the research process -Fear of research methods |
Linguistic | Words could be more “community friendly” (AA, L) | Minor modifications to increase clarity | -Inability to understand information on research |
Sociocultural | How to participate in clinical trials if uninsured, undocumented, and speaks no English. (L) | Added to presenter notes: being undocumented as a barrier; translators in place in most instances for Spanish-speaking individuals; and patient assistance programs for those uninsured. | -Being undocumented limited the Latino community access to clinical trials |
Phase IV: Community Review | |||
Cultural Areas for Change | Suggestions | Changes | Targeted Barriers |
Peripheral | Change pictures to be more appealing (L) | Replaced pictures | -None |
Evidential | Additional clarity needed on informed consent process (AA) | Added information to presenters’ slides on informed consent process | -Concern about privacy and costs in research participation -Distrust in doctors/researchers |
Linguistic | No Comments | None | -None |
Sociocultural | Use presenters from disadvantaged background (AA) | Identified CHEs representing diverse socio-economic backgrounds | -Distrust in doctors/researchers |