Data diary on PrEP focus group, lines 329 – 348
I had a frustrating experience trying to analyze line 329 – 333 of my transcript. I spent a really long time, probably far too long, trying to understand what “appearances” were in the sentence, “well it’s interesting I think just in terms of ah I think appearances always the big question and I’m like a huge proponent of like everyone has a strength that you can tie appearance to. But it’s an interesting juxtaposition as family planning moves towards LARCs and then to reintroduce a one pill once a day when we’ve been saying for so long that like women don’t want one pill once a day options they want LARCs.” I went on several tangents, trying to understand what this subject was trying to say and couldn’t understand it but it felt important. So I finally went back to the primary data and listened to it again, hoping her intonation would help. The tape isn’t perfect because there’s background noise, but I’m 99% sure she’s saying “adherence” instead of “appearance,” which makes a LOT more sense. Lesson learned: go back to your primary data source when you can.
My initial struggle reading this paragraph and understanding what she was talking about colored my response, and made me dislike the speaker. My gut reaction was, who are you to say what women want? A blanket statement that no women want a daily pill and all women want long-acting reversible contraception (LARC) is an absurd generalization about women. I was further enraged by the statement that “you’re trying to like you know counsel up the method, counsel up the method, and like constantly move up that method chart um to get folks to like the longest acting method and then dial back and say but you really have the strengths to take a daily pill.” It feels like she’s implying that women who can take a daily pill are “strong,” and those who can’t are therefore weak. There is no recognition of the social and structural forces at play in each woman’s ability to adhere or not to a method. [On a personal note, when I got stuck with a needle during surgery on an HIV positive patient, I had to start PEP, and I, an educated physician who spent a year counseling patients about needlesticks while working for the HIV hotline, could only manage ~90% adherence for the first 3 weeks of treatment after which I quit entirely instead of doing the full 4 weeks! I guess I’m weak myself...]
At the start of the paragraph cited above, the subject notes, “I’m a huge proponent of like everyone has a strength that you can tie adherence to.” I’m not convinced that she really believes that all women have strengths. In fact, the way that she describes her counseling of women, “counsel up the method, counsel up the method, and like constantly move up that method chart um to get folks to like the longest acting method” makes me wonder if she listens to patients at all. Rather, she has a clear agenda—to counsel women towards a method with the highest efficacy with the least dependence on user adherence. I envisioned a researcher coaxing a monkey to ring the bell, rather than a clinician having a counseling session with a patient about birth control. I think that allusion came from 1) the repetition of the statement 2) the dogmatic/emphatic tone that I heard when I listened to it again and 3) the choice of words to “counsel up” instead of “counsel about” – making clear her own agenda. She later states that “we’ve been hammering home people’s inability to be adherent to oral contraceptive pills in family planning forever now” – who has she been hammering home this concept to, and for what purpose? My sense is that she means the family planning community has been educating its providers that women are unable to be adherent, which again, made me question – is the family planning community really preaching that women are unable to be adherent to pills? Is she a leader in the family planning community who teaches this message, or is she someone who has heard this message and is reciting it? Both are frightening concepts, and tell us a lot more about the field of family planning than about the field of PrEP. Again, there is no reference to individual women, and the statement is a gross generalization about women’s inabilities in general. Is this how public health messages about long-acting reversible contraception are taught or (mis)interpreted? Is the family planning community, which has spent decades trying to promote women’s autonomy, really “hammering home” a message about women’s inabilities rather than strengths by promoting long acting reversible methods?
At this point, I was really disliking this provider, so tried to do a more empathetic read of her transcript. She talks about how funding is “tied to how well you get people on LARCs” – she herself is an individual functioning in a system, and the system incentivized her work to aggressively promote LARC (rather than incentivized her to illicit patient preferences and listen to individual patients). She sounds frustrated with the more complicated public health message she’s being asked to promote. She is being asked to “dial back” and “go back” to seeing “the strengths that individuals have,” and implies that she’s being asked to contradict herself to her own patients. She notes, “it’s a challenging mind game to play with staff” – but I wonder if it’s a challenging mind game for her. She clearly is a busy provider in a busy clinic with lots of pressures – “a lot going on,” “too many patients,” trying to get their census up.” Providing a new service like PrEP requires education, but she “can’t find a time to close the clinic” for continuing education. Plus, they’re already “backed up for weeks because you’ve got, you know, 150 women that didn’t get to come in and get their refills.” Presumably, with LARC, you don’t get that type of back-up because patients don’t need refills. PrEP, by reintroducing a daily pill that requires lots of refills, will certainly contribute to the backup and work load of an already over-burdened clinic/staff.
In sum, this provider’s transcript feels like it’s from someone who is trying to advance a public health message that she was taught and promote a method that is easier on her clinic. In so doing, she’s missing opportunities for shared decision-making, a critical counseling tool when there is no clear “correct” therapeutic answer. The HIV community has relied on the fact that family planning providers would easily the incorporate the concept of “offering” PrEP instead of “recommending” it from family planning providers’ experiences with contraceptive counseling; this transcript implies that some providers give very directive counseling around family planning, and so the concept of offering PrEP might be quite foreign. Offering PrEP with a shared-decision-making approach is a time-consuming venture. In already over-burden clinics that may be promoting LARC due to financial incentives and to avoid spending so much clinic work on refills, getting buy-in to offer PrEP will be challenging.