29th April 2009 at 6:07 pm #6107
I do ethnographic/qualitative research on sexual and reproductive health issues at the National Institute of Public Health of Mexico (where I also teach at the School of Public Health of Mexico). Recently I have used focus groups, individual interviews (short or in-depth), free listing, observation and sometimes document analysis to study topics such as an intervention to promote treatment adherence among HIV-positive persons in Mexico City, stages of change in Pap and HPV test use among poor women, acceptability of rapid HIV testing in a community context. I am planning ethnographic research for this year on breast cancer care/treatment and teen-friendly sexual health care.29th April 2009 at 7:04 pm #6111Cristian CerdaParticipant
Very interesting, Where can I read one of those studies?
Cristian29th April 2009 at 7:12 pm #6110
Thanks for your interest. All these studies have yet to be publish; they are either submitted for publication (but not accepted yet) or still in the analysis phase. Cordially, Betania29th April 2009 at 7:43 pm #6109Susan Julia ChandMember
It is very interesting. We are also doing further research on formal and informal support for HIV positive women in Trinidad and Tobago. Yes, this too was a qualitative research. The only constraint is the willingness of HIV positive women to come forward for individual/group interviews because of stigma attached. Your experience in reaching out these groups will be quite enlightening. Do share your experience.1st May 2009 at 7:22 pm #6108
My doctoral thesis was an ethnographic study of women living with HIV in Mexico. Stigma is definitely a problem when recruiting participants who live with HIV; it was for me both in my doctoral study and in the study I am participating in on adherence to antiretroviral treatment. Although I also think that people often feel they don’t have time to participate in a study, given their responsibilities (work, childcare and domestic work in general, time they need to invest in getting healthcare, especially if the care is public and highly bureaucratic). The strategies I used for achieving participation were different for each study. In the ethnographic study with women with HIV, I was in the field collecting data for 18 months. I began by calling a woman with HIV I had met in a previous study and asking if I could participate in the self-help group for women with HIV that she participated in. She said yes, and requested I prepare group activities for the self-help group. This was, in a way, my “payment” to the participants in my study. I prepared a series of activities taken mostly from feminist empowerment texts; finding activities was rather difficult. I guided the group in the activities and took notes about their participation and comments. Later, I continued attending the self-help group and sometimes did focus groups and other times just listened and took fieldnotes (I didn’t take notes during the sessions, but instead did so as soon as possible afterwards). When women mentioned they had an appointment at the hospital where the self-help group was held, I asked if they would like me to accompany them during their waiting for the appointment (but I never went into their appointments with them), or for lab tests, etc. I also participated in the activities of an NGO that some of the women participated in. After a year of observation and fieldnotes, I interviewed some of the women individually, at their homes or at the hospital. Throughout the study, I never asked how women had acquired HIV or about their husbands’ sexual activity; in a previous study, three of the women had commented that they hated it when healthcare personnel or researchers repeatedly asked them questions about this. Although I never asked any questions about this, eventually the women would talk about it, but when and how they wanted to. Also, I never repeated anything a participant told me to any of the other participants, no matter how trivial. For example, one woman said to me she would like to participate more in patient advocacy activities, but I did not pass this on to the woman in charge of these activities (also HIV positive), instead waiting for the first woman to speak to her if she wanted to, or not, as she chose. Or, if a woman said she wasn’t going to attend the self-help group because she was tired, I wouldn’t give this reason later when other women wondered why she wasn’t there (except if the woman asked me to convey the message explicitly).
For the study on antiretroviral adherence, in a first stage when I was not yet participating in the study, participants were called on their cell phones and asked if they would give an interview; the interviews were to take place in cafés or restaurants or at their homes, as they chose. Only one patient (an HIV positive gay man) accepted to give an interview; after a couple of calls, one woman asked the interviewer to not call her again (although she had not previously said she didn’t want to do the interview). After this, I joined the study and we re-designed the recruitment strategy. Interviewees had to be participating in an intervention to improve adherence; when the hospital gave us the name of a person who was participating in the intervention, we would then have the psychologist who runs the intervention ask them if they would like to be interviewed. She made it clear participation was totally voluntary. If the person agreed, a time would be proposed for the interview at the hospital, on the same day the person had an appointment there. The interviewer would meet the person at the hospital, and again say that participation was voluntary and that if the person didn’t have time or want to participate, they didn’t have to. All but three people accepted interviews (of those three, one said he would prefer to be interviewed at a restaurant near his work, and we did this; the other two were not interviewed).
In general, I have found that especially for people living with HIV, but also for people without, being interviewed at a healthcare facility they use for care is the best option. I think there are two primary reasons for this: when they are at the healthcare facility, their HIV status is known and when in that space they are not stigmatized for this. If they are interviewed somewhere else, they may worry about seeing someone they know or about people they don’t know overhearing them. If they are interviewed at their homes it can worry them that neighbors ask who the interviewer is or that the interviewer might comment something to them. This worries them even if the researchers promise to preserve confidentiality (which is logical, as they don’t know the researchers). The other probable (rather obvious) reason is that it is more convenient for people to do an interview or focus group when they are at a hospital or clinic for an appointment or test. They are already there, and it is just a little more time out of their day, but they don’t have to make the effort to get there just for the interview. Finally, in general the best way to figure out how (where, when, etc.) to interview people is to ask a few of the people you want to interview what they think the best/most convenient way would be. Doing snow-ball sampling is also a good technique. Cordially, Betania
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