Below the Radar Transcript

Episode 101: Engaging Community in HIV Research — with Angela Kaida

Speakers: Alex Abahmed, Am Johal, Angela Kaida


Alex Abahmed  0:01  
Hello listeners. I'm Alex Abahmed with Below the Radar, a knowledge democracy podcast. Below the Radar is recorded on the territories of the Musqueam, Squamish and Tsleil-Waututh peoples. On this episode of Below the Radar our host Am Johal is joined by Angela Kaida, an associate professor in the Faculty of Health Sciences at SFU. They discuss Angela's research concerning women living with HIV, ethically navigating community based research, relationship building and continuing research during the pandemic. I hope you enjoy this episode.


Am Johal  0:34  
Hi there, welcome to Below the Radar, really excited that you could all join us again. I'm really excited to have Dr. Angela Kaida with us from the Faculty of Health Sciences. Welcome. 

Angela Kaida  0:45  
Thank you, Am. 

Am Johal  0:46  
Yeah, I'm really happy that you could join us. Since September, you've been a researcher in residence with SFU's Community Engaged Research Initiative, but it has sort of timed itself in the same time as a global pandemic, as well. I'm wondering if we can sort of just begin by you introducing yourself a little bit in terms of your own research area? 

Angela Kaida  1:07  
Sure. Great. Thank you so much. So as you mentioned, I'm an associate prof in the Faculty of Health Sciences here at SFU. I also hold a Canada Research Chair in global perspectives on HIV and sexual and reproductive health. And so I'm very interested in passionate about sexual and reproductive health primarily for women and non gender binary people, and particularly in the context of HIV. And so I work within a community based research framework across all of my research, and I do work here in BC and across Canada, as well as in Uganda and in South Africa. 

Am Johal  1:43  
Okay, and you've done some work with the World Health Organization as well, or have sat on committees. 

Angela Kaida  1:49  
Yep. So the World Health Organization has a Division of Reproductive Health and Research. And it's about three years ago, now, they released what was called the consolidated guidelines on sexual and reproductive health for women living with HIV. And it was the first time that the WHO had really taken a community engaged approach to developing these guidelines, and had come to our group as one of the probably few community based research programs that operate nationally in sexual reproductive health for women living with HIV. And so we had partnered on, you know, trying to get out to the world really about how we'd engaged in the research that we'd done, what difference it made, and what kind of models we could put forward for other groups looking to do CBR, community based or community engaged research. 

Am Johal  2:37  
Now you did your grad work at UBC, at the Center for Population and Public Health. I'm wondering if you could talk about what you were doing during your PhD research, to get a sense of the arc of your research interests. 

Angela Kaida  2:51  
Yeah. So yes, I trained at the School of Population and Public Health at UBC. I did my PhD there, and was also working with the BC centre for Excellence in HIV AIDS at St. Paul's hospital downtown. My PhD was focused on reproductive decision making and outcomes of women living with HIV in South Africa, primarily. And I was conducting my research in sort of the mid 2000s. So 2006-2010, and really it was a time when we were seeing very rapid scale up and access to antiretroviral therapy for people living with HIV in hyper endemic settings, and low and middle resource countries. And so at the time, the questions that I was asking really required me to talk to a lot of women and really try to understand what was happening, what did they know about rapid increases in access to treatment, what was happening with their decision making, I didn't really formally engage in a, what I would now call a community based research framework. I was really an epidemiologist in training, trying to understand the social and structural factors that shape our health. And you know, sort of watching some of my colleagues at the BCCFE and some of my fellow trainees having an opportunity to really work more closely with the communities that their research was meant to serve. So whether that's, you know, here in Vancouver, across BC, with particular population groups, they were just able to kind of connect a little bit more closely with their target research populations. And I felt like their research was just so rich because of it. Sometimes, you know, you can train in academic research, and it kind of removes you, in some ways, from the communities that you're meant to serve. And the model that some of them were working with was just really exciting to me. And so it actually wasn't until I finished my PhD and started my faculty position that I really started to engage with CBR approaches across my research. 

Am Johal  4:49  
Now I find in talking to other researchers in different disciplines that do either a community based or community engaged research people find that the research process can take longer it takes longer to build relationships. But as you said, the findings are much richer, and have more depth, at a series of levels. And even the quantitative methods can be quite interesting in terms of how they come back and are disseminated back into various communities. But I'm wondering, in going through the research process over multiple research projects over the years, how would you define the sort of relationship building part of the process as you engage in a project from the beginning through to the end, to disseminating the findings? 

Angela Kaida  5:34  
Yeah, I mean, relationship building is, you know, people always talk about it as time consuming, and resource consuming, etc. But it's wonderful. I mean, it really genuinely is such a wonderful part of the job that I get to do. And really, I think, because I care so deeply, and practice allyship towards women living with HIV, I guess I feel very honored to learn from them to build these relationships over time. And so I think I found that relationship building is relationship building. [laughs]

Angela Kaida  6:08  
It, you know, it takes time, it takes trust, it takes mutual interest, you know, we really, I think, engage in a process of reciprocity. So I really feel like there's things that I can teach my community partners, and there's certainly things that they teach me. And so I think working from a model of reciprocity has really strengthened what we're capable of doing. So you know, I don't expect my research partners to run the kinds of, you know, quantitative analyses that I run, but that's something that I can bring to our relationship and our partnership. And I can do things and we do a lot of work around capacity building in areas that they identify as important. So I'll give you a practical example. So within, I'm a PI of a study called the Canadian HIV Women's Aexual and Reproductive Health Cohort Study, and it's the largest community based research study of women living with HIV in Canada. We've enrolled 1422 women, and we follow them every 18 months over time. And as part of the infrastructure for that study, we've hired and trained, what we call pure research associates. So these are women who are living with HIV, who undertake training with us in research and then are hired by the study. So they might recruit participants, they administer surveys, they serve as stewards of the study in their communities, several roles. But different PRAs have different strengths and different interests. And in our group here, it turned out that there was quite a bit of interest in quantitative data analysis. And so we really undertook a training curriculum around what is it, what happens when epidemiologists collect survey data? What happens? What do we do with that data? How do we summarize it? How are we getting to the findings that we get to when we write papers or deliver presentations? And so that is something that I think has been just quite a joy, actually, for our team, to really, I think, equip our PRAs with that understanding of some quantitative data analysis, and really helps with the dissemination components of our study. So if they can speak back to those data in their own communities and understand how we got to those findings, it's just that much more powerful. 

Am Johal  8:27  
Yeah, you know, one of the things that comes up with community based research, meaning good research are ethical questions around informed consent. And in parts like that, there's the institutional side of getting ethics clearance. But as you know, questions are ongoing in terms of the research process. I can remember, in the late 90s, questions of research, and really detailed debates around what constituted informed consent related to doing research with drug-using communities. VANDU, members of VANDU were like, well, we can sign that form, and we can participate. And there were executive directors of NGOs saying, well, if people are having challenges with addiction, they can't participate or give their consent. And, and you know, where the line was drawn was different for different people. And so these kinds of dilemmas come up in various forms. I'm wondering, over the course of doing your research over many studies, and in working with many communities and a number of countries, how do you reflect back on the sort of ethical questions that arise in these areas? Or how do you navigate them beyond the institutional kind of requirements around ethics? 

Angela Kaida  9:33
Yeah, it's such a great question. I mean, certainly, I would say that our IRB here at SFU knows me and my research program very well. I've probably been a big pain for them in a lot of ways. But we're working through it. And I think, you know, reflecting from our side, I think, you know, I've seen a lot, I've experienced a lot of paternalism in those discussions about who can give consent and at what point you can give consent etc.

Angela Kaida  9:59  
I think one of the ways that our research program has evolved in this way is that we take a lot of time to administer consent forms, and to go through the ethical, voluntary consent process with participants. And it's something actually that I've learned from some of my Indigenous research colleagues. So to really say, when you are asking for consent for research participants, sometimes as academics, we treat it as a little bit of just,  the like steps that we've got to run through to kind of get to the interesting stuff. And they have really challenged me over time to just slow that whole thing down and see the process of requesting voluntary consent as part of the relationship building between a research program or researcher, and a participant. So one of the strategies that we take and it depends on the type of study. But one of the strategies that we've implemented is if we are doing a study where it's a qualitative sharing circle, or a focus group discussion or something like that, we'll spend the first 45 minutes of our time together, reading the consent form out loud, and asking as we kind of go through as a group, reading the consent form out loud pausing asking does anybody have any questions? Does this make sense to you, etc. And so of course, that takes a super long time. But as part of doing that now over, I'd say, five or six years, we've really come to learn where some ethical kind of quandary sits for our participants relative to what our IRBs might be asking us about. And so implementing those types of processes in our research, has allowed us an opportunity to sort of come up with a, sort of, an ethical challenge about like, Okay, who can answer this? Under what circumstances? How do we protect the safety of our PRA, relative to the well being and the rights of the participant? How do we navigate that space? And actually going through the consent form in that way with participants just has helped reveal to us some of the opportunities and some strategies to overcome some of those ethical conundrums.

Am Johal  12:17  
So in this COVID 19 period, which has disrupted all sorts of ways of doing research and activities around societies around the world, how have you navigated the challenges it's posed to you and the research that you're doing now? 

Angela Kaida  12:32  
Yeah, I mean, like anybody doing research, and anybody doing community based research, for sure, this has been a tough time. And I think we have had some, like flops, for sure. And we have had some good lessons learned and some successes. So I think, you know, I'll give you a very concrete example. So one of the studies that we’re involved in is called Chilo Spa. And it's a study that's focused on Indigenous women living with HIV, and how they understand and experience their own health and health care through traditional ways of knowing. And the research project was designed in collaboration with Indigenous women living with HIV. And, you know, we collected this data back in December, multi day gatherings and retreats with participants, and we had this plan, that we were going to do an initial analysis of our data, and then have another gathering with the participants and feed that back to them say, Okay, this is what we learned from you from that session. And this is before we wanted to take it out to other stakeholders to publish to present at conferences, we really, you know, in our research model, that's a really critical step is to take your findings back to the participants. So we organized a session, this is now, now we've hit COVID. So we're in April, I think, and we can't come together. And a big part of our research program, when we come together with participants is their ceremony involved. We often feast, right, we're learning from our Indigenous colleagues about how to do this research in a good way. And so that's how the whole project was designed. So now we're in COVID. We can't do this. What do we do? We call everybody okay, well, let's just do this virtually, right. Here's the zoom, here's the thing. And my team shows up and not a single participant, makes it to the gathering for lots of different reasons, some totally forgot, some can't get internet access, some, you know, all of the things. So we were very nervous, because we thought, well, we have these findings, we really need to feed it back to the participants and have this discussion before we can, you know, move forward with this. How are we going to do this? So we thought, oh, we'll set up one on ones okay, it's a big resource demand, but we'll set up one on ones between our team and each participant at a time that works for them so that, you know, if they can't do zoom, they can at least do a phone call. That also doesn't work. Right. People don't want to do it. [laughs] And I would say at that time, people were really hopeful that you know, we'll get together once COVID is over.

Angela Kaida  15:00  
Right, that optimism that probably none of us have any longer but maybe back in April, May, we thought we could have some optimism. So we changed the whole strategy. And rather than it being kind of this sort of formal researcher to participant discussion, we change the orientation to it. And we call it heart to hearts. And I asked one of our peer research associates, our lead, who really has amazing expertise in this way. And she connected with each of the participants, almost the first bit of it is about really like, how are you? How's it going, you know, what has this been like for you? That part of the relationship trust building. And then we were able to go into some of the research type of requests that we had. And so that approach is pretty unconventional, I guess, not easily replicable, depending on the nature of your research and your team. But it was a strategy that ended up working for us. And other things that we've done is we've worked to help some of our team members get access to the internet in their homes, right? So Telus has a great program where you can get access to fairly inexpensive internet in your home, our study team was able to pay for some of that, to deliver, you know, laptops or internet enabled devices to some of our team members who might not have had that at home. So just trying to overcome some of those barriers, to continue to be able to be in touch with our team members in the ways that were available to us. 

Am Johal  16:31  
Now, you have a number of grad students that you work with, who are also going through this COVID period. But I wonder if there's people who are listening to this podcast, who are grad students themselves who are thinking about using community based research or community engaged research. What would be your advice to them particularly early on in their grad student careers about how to approach and think about utilizing some of these methods? They are obviously different by discipline that people are researching but some of the processes or ways of working might be similar. But what's your advice now that you're inside of the institution as a candidate or research care doing this work with grad students? What advice would you give to people? 

Angela Kaida  17:13  
I mean, I guess, go for it! It's a, you know, you've got to open yourself up to some vulnerability, open yourself up to not just academic learning, but other, you know, forms of personal growth and development. And the timelines, there are some risks because timelines are a little bit less predictable, when you work in this way. And it's less of a streamlined process, I would say for sure. Having done the kind of research where you know, you're just given a data set, perhaps and your job is to, you know, analyze it. Of course, there's not a lot of risks in that domain. But there's a lot to be gained, I think in using a community based research approach, a community engaged research approach. And I think some other tips are about, you know, do some research into the teams that you're interested in working within. Right? Check them out, check out the PI, check out the, coordinate like the research staff level, talk to previous students who may have graduated working within that research program, and really just get as much information about the space that you might be joining that you can, especially if you're very fresh to community based research, the more you can talk to people who have done what you're doing, or, you know, are partway through what you want to do. I think just the more realistic you can be about what maybe you can expect. And if you have a chance to listen to talks by people who are engaged in community based research, to get a feel for how we talk about our process. You know, for myself, I often co present with peers on our research team or community partners on my research team, we co publish together we co author papers, so these types of models and talking to folks and figure out what are the pros and cons, from your eyes and from what you want out of your graduate training.

Am Johal  19:12  
And you're currently a researcher in residence with the Community Engaged Research Initiative at SFU. Can you talk a little bit about the research we're working on right now and into the future here? 

Angela Kaida  19:22  
Yeah, you know, I have three projects that are linked to CERI that they've given us some support for graduate students to be involved in our work. I've already talked about that she was past study, but I will talk about the other one, which is called Life and Love with HIV and so this has been a great project because it was already a digital project. So we had to move to COVID and we were like, great. We're very well situated to do this. And so Life and Love with HIV is a project that was actually started by my former PhD students, Dr. Ali Carter, who's now in Australia. But what we started to talk about was when it comes to women living with HIV, a lot of the information that's out there is very shaming, it's very victimizing. And it's very oriented to HIV transmission risk, either to sexual partners or to future infants. But there was so little, basically nothing out there that was really focused on her and her sexuality and her sexual health, just in and of herself. And so we do a lot of research in this space. But we're finding that in the knowledge dissemination, or KT space, there was very little. So we started Life and Love with HIV, which is a website and a link social media platform, where women living with HIV from around the world write blog posts about their experiences of living and loving with HIV. And so we've created this feminist digital space to talk about where we can share research findings, we can share lived and living experience, we can connect women, and really create this online, I don't know, radical inclusion space. So if you're recently diagnosed with HIV, or somebody who you know is you can kind of come and hear this other type of information, this other type of evidence about what it means to live and love with HIV. So the project has been supported by CERI and we've been able to engage a graduate student in this work. And we're working to sort of build up the site, increase its viewership, and measure the impact of digital spaces as a form of knowledge translation. Particularly for topics that can be very well served in an internet space, right topics that may be very stigmatized, may be very isolating, you can kind of create this other online community. And so that's been a source of work for us for the last two and a bit years and kind of continues to expand into different research projects and I guess as a resource. And for instance, the site itself, it has now been included in a toolkit that is directed at providers who are caring for women living with HIV. And the toolkit is focused on, you know, how to provide women centered HIV care. And one of the resources that the toolkit points the clinicians to is our resource of Life and Love with HIV. So we're just really proud and excited to see what the space can continue to become. 

Am Johal  22:24  
I can see that you're really excited by it.

Angela Kaida  22:27
Yeah. [laughs]

Am Johal  22:27  
Angela, thank you so much for joining us on Below the Radar. 

Angela Kaida  22:30  
My pleasure. Thank you so much for inviting me.


Alex Abahmed  22:35  
Below the Radar is a knowledge democracy podcast created by Vancity's Office of Community Engagement. Thanks for listening to our conversation with Angela Kaida. You can find out more about her research by visiting the links in the show notes. Thanks again and see you next time on Below the Radar.


Transcript auto-generated by and edited by the Below the Radar team.
January 26, 2021

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