Priority areas identified by patients and providers, and representative quotes
| Priority | Illustrative quote*† |
|---|---|
| Common priorities: patients and providers | |
| Integrating HIV care with comprehensive health care needs | I would lump all that [HIV care] together with comprehensive care for women. Because that would address almost everything. Sure, we see a specialist for HIV, but there isn’t just that in the lives of women living with HIV. If we go to a medical clinic, even one specialized in HIV, then, well, “viral load is undetectable, CD4 is 1000, all is good, goodbye!” Then we are promoting the idea that this is women’s sole identity. … I think care must [be comprehensive] — and I’m daring to say “must” because it’s imperative that care be in line with the evolution of the HIV epidemic. Because we are often told that things have advanced, but could we also advance in the care? It’s really to consider a woman as a whole person. There isn’t just HIV in her life … it is not her identity, she is a woman. (Patient) The integration of HIV care with other health care needs is related to this idea of comprehensive women’s care. HIV is but one of the health concerns that she may have, but there can also be menopause, diabetes, being pregnant, needing contraceptive care, depression — and that all needs to be coordinated and integrated in her care. (Provider) |
| Increasing HIV-related knowledge of all care providers to prevent HIV-related stigma | How do we train providers so that there is less discrimination, so women don’t end up with a gynecologist who doesn’t know what a CD4 count is — and I mean training as much for social workers as doctors, as pharmacists. (Provider) I needed to have vaccines, so I went to the [community clinic] near my house. I told the truth … maybe the doctors needed to know what medication I was on. And they were all ready to give me the vaccine, but when I told them that [I was HIV-positive], they wrapped everything up, put everything away and said “Oh, no, we can’t do that. Go see your doctor at the HIV clinic and he will give you your vaccines.” (Patient) |
| Covering the full costs of antiretroviral therapy and care services (not currently covered by the Régie de l’assurance maladie du Québec) | Especially with age, there are certain situations that we did not see 10 years ago — for example, joint pains, back pains — so we talk to the doctor and he refers you to a physiotherapist, etc., but often those are professionals that you have to pay out of pocket for. If you don’t have private health insurance, then you get stuck paying for it, or stuck with the pain. (Patient) I have seen many women living with HIV who are working minimum wage, 2 young children, single mom, the kids don’t have anything to eat, and so she prefers to say “I will not take my ART, I can’t pay for it, I will feed my kids.” … Poverty among women living with HIV is glaring. It’s a top priority. What can we do? (Patient) Here in Quebec we still pay for medication, and it’s very expensive. We still have systems of copayment. Poverty is the biggest reason why patients need support programs. (Provider) |
| Patient priorities | |
| Diffusing the U=U message | People who don’t read these articles, who don’t go to conferences … they are not well-informed. We have to find other ways, like Undetectable = Untransmittable, people have to know this, because people have stayed with this old idea that HIV means death. (Patient) |
| Addressing aging and menopause | Do follow-up care for women who are in menopause, because they find themselves abandoned, because they are no longer of reproductive age. (Patient, previously followed by gynecologist for contraceptives) |
| Fostering continuity of care (same providers and across interdisciplinary providers) | I also really like what we call continuity of care. I’ve been with the same doctor for 15 years. We talk about everything and he knows me, he doesn’t even need to ask questions because, when there is a change, he knows, he sees it, and I find this very important. (Patient) I think there should be communication between your HIV doctor and your family doctor, too. They should make a team. (Patient) |
| Provider priorities | |
| Situating health among women’s other life priorities | For women who we have difficulty retaining in care … you know she had the choice between going for a job interview and going to the clinic. Or she has to go get her children at school at 3 pm, because daycare service is too expensive, and then her doctor is not available outside those times. In these circumstances, you tell yourself, it’s not easy. What a battle just to get her care. (Provider) |
| Initiating reproductive discussions | The biggest gap for women less than 50 years old is the reproductive health discussion. In each of our offices, we have a list of all screening to be done by age group, for example, Pap [smear] and mammograms are always there, but reproductive health discussion is not. I find that interesting, and it’s really important for HIV now. (Provider) |
| Adapting to the population of people living with HIV | It has historically been more of a male population, so that means that the specific care for women is really, really forgotten. (Provider) |
| Delegating care acts within multidisciplinary team | The idea is to open up these medical acts, not just doctors but to the whole … interdisciplinary team. The delegation of these medical acts is not very well established. (Provider) |
| Providing patient education | [Patient education] is in line with HIV as a chronic disease. Chronic disease models are always models focused on the patient, focused on self-care, and so that is a part of that: awareness, education. (Provider) |