(no subject)

[rivka]

Every time I start work on grantwriting, I think about how interesting it would be to document the steps of the process in my LJ, so that people can see how a vague research idea turns into a fully-formed proposal. Every time, it quickly becomes clear that just writing the grant is enough of a monumental energy drain, without adding writing about the grant to the mix. So nothing gets posted because the task just seems to large.

I'm in the middle of preparing an application to the National Institutes of Health, in response to a call for research on how people make decisions about treating a life-threatening illness. I'm proposing to study how people with HIV make decisions about starting anti-retroviral therapy. In particular, I want to combat the ridiculous tendency that medical decision-making research typically has of assuming that it's a purely logical process of weighing risks and threats against benefits. I think that irrational factors often play a critical role in medical decision-making.

One factor I want to examine is the extent to which people have a cynical, suspicious, mistrustful attitude towards HIV research and treatment, and the extent to which they buy into AIDS conspiracy theories. This morning, I've been working on developing a questionnaire to measure those attitudes. I thought I'd go ahead and post my working version of it, to give people a glimpse of what I'm doing. Comments and suggestions are very much welcome.

Respondents will be asked to rate the following statements on a 5-point scale from "disagree strongly" to "agree strongly." There's a little blurb at the top of the questionnaire explaining that people's opinions differ on these matters, that we are interested in hearing what they really think, and that we will not share their answers with their doctor or anyone else.

1. The U.S. government was involved in starting the HIV problem.


2. You can generally trust information about HIV that comes from official sources (doctors, newspapers, the government).


3. There is a cure for HIV, but only certain people are given access to it.


4. HIV doctors are unfairly experimenting on poor people and minorities.


5. HIV research makes patients safer and helps them live longer.


6. The Tuskegee study proves that people should be suspicious of doctors and medical researchers.


7. Drug companies aren’t interested in finding a cure for HIV, because there’s a lot more money to be made if people stay sick.


8. I can trust my doctor to make sure that I get the best possible treatment.


9. HIV was designed to get rid of people that American society doesn’t want, such as homosexuals and African-Americans.


10. In general, HIV medicines get enough testing before they release them to the public.


11. Doctors and medical researchers are more interested in making money than in helping people.


12. The real truth about HIV is hidden from patients.


13. When a cure for HIV is developed, everyone will be able to get it.


14. My doctor will do everything possible to keep me alive and well.


15. Doctors often use patients as “guinea pigs,” giving them experimental treatments without their knowledge.


16. It hasn’t really been proven that HIV actually causes AIDS.

Incidentally, pretty much every one of these items is taken verbatim from things clients and research participants have told me. I've switched some of them around so that there's a mix of positive and negative responses, because otherwise there's a danger that respondents will just fall into a response set (agree, agree, agree...) and stop thinking about the individual items. But I haven't exaggerated anything.

Comments

[rivka.livejournal.com]

I'm going for an R21. I don't have the status to apply for an R01 on my own.

The Tuskegee study is widely known and discussed in the population I work with. In many cases, it's probably the only research study they've ever really learned about.

[tchemgrrl.livejournal.com]

Ah, I've seen R21's in progress, too. Still stressful. :)

The Tuskegee study being so well-known and discussed is surprising to me, just because my own experience with my (white, largely working class) family is that it's generally harder to get them to *mistrust* a doctor, rather than the other way around. I suppose that still falls under "irrational factors".

[mjlayman.livejournal.com]

Rivka primarily sees black inner-city folks. The Tuskegee study looms large in the black community, rightfully.