Article Figures & Tables
Tables
Source of evidence Investigator Participants Main results Focus groups (qualitative) O’Brien et al., 2017 (21) 77 women living with HIV (British Columbia, Ontario, Quebec) Women’s perspectives and experiences of care in Canada summarized in an envisioned model of women-centred HIV care Cohort surveys (quantitative) O’Brien et al., 2019 (9) 1164 women living with HIV (British Columbia, Ontario, Quebec) Comprehensive care gaps experienced, HIV-related outcomes (e.g., adherence, viral load) and women’s health (e.g., reproductive discussion, Papanicolaou test) Systematic review (mixed methods) O’Brien et al., 2018 (42) 44 peer-reviewed articles, n = 17 659 women living with HIV Features of care at the provider, clinic and social structural level found to improve access to care for women living with HIV Phase 1: Care priorities What is your response to the research presented? Is there information that resonates with your knowledge or experience?
Of the care gaps identified, which 5 should be prioritized?
Phase 2: Care improvements If you could bring 2–3 modifications to the health care system that would bring about rapid change, what would they be? (no set time specified)
If you could bring 2–3 modifications to the health care system that might take more time but would have a lasting impact, what would they be? (no set time specified)
* Translated from French.
- Table 1:
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) - Table 2:
Codesigned care improvements recommended by patients and providers, and representative quotes
Care improvement No. of votes Illustrative quote*† Rapid Top 4 recommendations Delegate care to nurses and nurse practitioners 10 In our group, we were talking about interdisciplinary teams. It’s up to each clinic to decide how to delegate different medical acts, certain preventive activities, women’s health. (Provider)
Delegate certain professional acts, for example, to nurse practitioners: as much for you [doctors] as for us [patients]! It could be a solution that is relatively quick. (Patient)Make space for community within HIV clinics and at different levels of decision-making 8 Open the doors so women living with HIV could sit on decision-making committees, at the Ministry of Health, at the governmental level … it’s possible. (Patient)
Get the community within the clinic. … For sure, this is delicate, but I know that when we add a new service to a team, at first everyone is quite uncertain, but after some time it finds its place, and those people then become essential. (Provider)Creation of a women’s health information booklet 8 The second thing is a booklet or information package on comprehensive care for women, and it would have information on HIV appointments for tests (Pap [test], mammogram, etc.). And the frequencies, because sometimes we forget, or we don’t know. (Patient)
So women gain responsibility, or to raise awareness among women, because it is also up to me to take charge of my health. (Patient)
There’s a lot of emphasis on care guidelines for doctors and nurses. But what about a little care passport for women that they have themselves? Like a vaccination booklet. Women could say “Listen, I’m due for my Pap test.” (Provider)Training and education for all care providers 7 There should be awareness-building and knowledge-transfer workshops for care providers, nurses, doctors, etc., who are not in the HIV sector. … Because if they know how it gets transmitted, then they will be less afraid. (Patient)
There’s [a provincial initiative] trying to implement provincial training so that a person in [rural Quebec] can go online and get the training on “HIV 101.” Outside of Montréal, there are so few [people living with HIV], so it’s not so much a lack of interest as misconceptions, and then it’s scary: “I don’t really want to get too close because I don’t understand.” So what we are doing is having a designated person in each family medicine unit who is [trained] in substance use, hepatitis and HIV, to increase the confidence levels with these disorders. (Provider)
We have to remind ourselves that, for many women, their HIV doctor is the only doctor they see … the HIV care providers should also be women’s providers for their comprehensive care needs. (Provider)Other recommendations CHIWOS researcher should present research results 2 The CHIWOS researchers should present results to each multidisciplinary team so that they can then make concrete tools to improve their care practice. … Just having this discussion this afternoon wakes us up to what we could all do in our clinics, but I think it could be broadened by going to each clinic. (Provider) Creation of resources booklet to facilitate communication among providers 2 Like a list of resources … for providers to be able to orient patients adequately within the health care system and avoid instances where they feel discriminated against, while we wait for education to be done. (Provider) Longer-term Top 3 recommendations Full financial coverage of antiretroviral therapy in context of U=U 11 I agree that it would take a lot of political will and a lot of work, but the moment it is implemented, it will change the entire landscape. (Provider)
Full coverage of other health services and, most importantly, ART. (Patient)Health service coverage 10 Free access to mental health services for people living with HIV. (Provider).
People should have access to care like physiotherapy or kinesiology or something like that, if [the problem is] following side effects of the medication or is due to HIV itself. (Patient)U=U public campaign 8 We would really appreciate if public health — so, starting from the top instead of from the ground up — if they’d continue to inform the population on HIV, but to do so around U=U, and that it be widely diffused to the whole population, so that the message is received more effectively. (Patient)
There are challenges regarding HIV knowledge, the lack of overall HIV knowledge of care providers in the health care system. And it’s true that, at the ministry level, there is not a lot of efforts being made for U=U. Sure, it’s new, but still, there is a lack of knowledge. Even just that HIV is a chronic disease now. We need to be doing whole-person care. (Provider)Other recommendations Facilitate family doctors as care providers 3 I’m a huge advocate for family doctors to continue to do routine HIV follow-up, because it brings a comprehensive care approach, and it’s a specificity that we have here in Quebec that isn’t everywhere. … HIV clinics, in my opinion, should really have an approach that is much more a chronic disease approach, like diabetes, like hypertension. (Provider) Outreach nursing care 2 This might not be required for everyone, but outreach nursing care or follow-up care by phone [should be available]. For people to not always have to be the ones travelling, sometimes there are things that can be done by phone, or some blood draws that don’t need an appointment. (Provider)
[Outreach nursing care] is already offered for active drug users, but for the woman who is a single mom, working — well, her, she needs to come in for an appointment. (Provider)Mandatory health days within labour codes 1 Employees are quite hesitant to ask for time off on a pretty regular basis. They don’t want to make their employer think that they have something. (Provider)