Table 3 Emerging illustrating themes on participants views towards cancer clinical trials and the education program
Theme | Subthemes | Examples of Participant Statements |
|---|---|---|
Community Perspectives on the Overall Presentation Definition: Describes the participants’ thoughts on the presentation itself (e.g., aesthetics and data presentation) | -Statistics -Order -Images/Figures/Videos -Materials -Length -Clarity -Audience size -Testimonial -Location -Other | “... the information is very clear. It does not contain any scientific or elevated information that is difficult to understand. I think that most of the population can understand it.” (Clarity, Latino) “Bigger, 50 to 100 people, they begin to look at the ceiling. In that way, you have the control of the group. Bigger groups, you lose control of the group.” (Size of Audience, Latino) “... the language was okay. I thought it was simple enough. I can’t imagine how more simpler you could explain that. I would be infuriated if you tried to break it down anymore, but that’s a personal thing...” (Clarity, African American) “… the color, I don’t think that works for a lot of people ... you can dismiss it. (Other, African American) |
Community Opinions and Questions on the Content of the Presentation Definition: Describes the participants’ thoughts and questions on the information provided in the presentation. This applies to data, topics, etc. | -Too Specific -Not enough information/specificity -Relevance to population -Benefits of clinical trials/biospecimens -Cause/ background/ prevention -Financial -Personal -Clinical Trials/ Biospecimen Process -Purpose of presentation -Participation -Increased Awareness -Respectful/appropriate -Children | ”Do we have bad habits that we are not aware of and that is contributing to so much cancer, for example, no??” (Not Enough Information, Latino) “...a definition of what a clinical trial is.” (Not Enough Information, Latino) “Put positive stuff behind it just to show numbers and stuff. You know, like you got like 45% of people having success in going through clinical trials or something like that.” (Not Enough Information, African American) “Maybe if you could ... if somebody would come forward and do a testimony ... if they’ve been in that type of situation or something going on with them with cancer or something, maybe they would come and tell they story, if somebody would come forward.” (Not Enough Information, African American) |
Culturally Specific Issues to Participation in Cancer Clinical Trials Definition: Distinguishes specific cultural concerns for Latinos and African Americans | -Latino specific issues -African American specific issues | “Clearly, there’s an understanding that there’s a huge mistrust, particularly in the African American community, and so when you see information about HIPAA regulations or that kind of thing, that is a glimmer of hope for many people.” (Mistrust in Research, African American) “Your lifestyle and your diet, that’s why ... (inaudible) ... and the very unhealthy way they eat. They are brought up with that. What they idolize is not healthy. I mean, how often do you hear ... (inaudible) ... eating healthy, wheat bread? I eat Kool-Aid, hot chips, corn flakes …” (Diet, African American) “I also think it’s because of fear and because many people don’t know how to read. They don’t have this ability that we have.” (Fear of Research Methods, Latino) “I think it’s also trying to get us (the Spanish community) to participate more, because there is little information out there for us to go …” (Language Barrier, Latino) |
Barriers to Clinical Trial Participation Definition: Participant mentions barriers to clinical trial and biospecimen participation | -Language -Lack of Information -Privacy -Fear of research methods -Cost -Immigration Status -Mistrust in doctors | “Talk more about the fear we have to participate, because I hesitate because I think, well, what are the risks or side effects?” That is the biggest fear. People don’t want to feel like a guinea pig.” (Fear of Research Methods, Latino) “I think lack of information is the major problem. There are a lot of people that are afraid of what is going to happen to them, side effects, because a lot of people don’t like to take medicine, including me. Also, about insurance and all that, that also should be clear ....” (Lack of Information, Latino) “I got a problem with these clinical trials. They say they tell you about the risks and all this and all that, but they ain’t ... like she said, she’s got asthma, but then they gave her an inhaler that had something, you know, that she was allergic to and she probably didn’t even know about it.” (Mistrust in Doctors, African American) ”... A lot of times it’s just lack of knowledge. People go through everyday thinking and they’re not plugged in, or they don’t have the information to know these things are out there ... (inaudible), and a lot of people don’t know it’s there.” (Lack of Information, African American) |
Perspectives of Community Health Educators Definition: Addresses the opinions of the CHEs that delivered the original module in the previous project phase. | -Comfortable/satisfied -Discomfort -Group dynamic -Importance of community -Recruitment | ”I felt very comfortable with presenting the slides. I thought the slides were concise.” (Presenter) “And they came and did some tweaking, and then we got back together. So, we had input all along the way.” (Presenter) ... I’m not sure that people know that there is an opportunity for them to be a part of this peer education process [Be a CHE]. Now, if we could find ways to get that out there, just like getting the word out, that would increase the number of people involved in the communities that you are trying to pull into this.” (Presenter) |