Experiences of People Living with HIV
Background of Individuals Living with HIV
Eight participants disclosed that they were living with HIV. Five participants adhered to anti-retroviral treatment (ART) at the time of the interview. Three participants were unable to access ART or were unable to take it according to the medication safety guidelines. All eight interviewees had been HIV positive for longer than 10 years. Nine interviewees had been accessing services at Trellis HIV and Community Care for more than 10 years. One interviewee had been accessing services for less than 2 years.
Experiences of Individuals with Lived Experience of HIV throughout COVID-19
Participants were asked to discuss the implications and effects of their HIV status in their day-to-day lives. From the analysis, four key sub-themes appeared across participant interviews: worsening mental health, difficulties accessing resources from ASOs, disruption in medical care, and the inability to connect with others.
Worsening Mental Health Outcomes
All eight service users experienced worsening mental health outcomes throughout the COVID-19 pandemic. Participants cited food and financial insecurity, difficulties accessing housing or obtaining employment, and fear associated with the unknown circumstances that the pandemic would bring as exacerbators of their mental health struggles.
A common mental health complaint raised by participants was the development of agoraphobia. Three participants in this study expressed difficulties with feeling safe, resulting in barriers to accessing the resources they required. Aryanna explained that they:
“got into a set of depression that developed into agoraphobia… I had no one at the time, for many months. I developed very severe—I am very severely bipolar. I am borderline manic depressive and that set in really hard… so I didn’t have anyone to talk to. No psychiatry, no counsellor [at Trellis] or Hotel Dieu. I became borderline suicidal even at times.”
Aubrey A. also explained that they “…developed agoraphobia, where it would take [them] a week to go outside, to even go to the grocery store…”. Dean expressed similar anxieties about going out in public, explaining that “…the crowds started to bother [him]. So, [he] just decided to…something was telling me that [he] better back off, so [he] did”.
Agoraphobia is defined as the fear of venturing into public spaces and classified a mental health disorder by the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V) (Huang et al., 2010). Past research has revealed agoraphobia to be common among PLWH (Shacham et al., 2014). Narratives from the participants in this study demonstrate that the anxiety-inducing nature of the COVID-19 pandemic directly influenced the development of agoraphobia, which, in the case of Aryanna, further exacerbated other existing mental health concerns, resulting in mental health challenges that were difficult to manage without support. Prior to the pandemic, these anxieties and the agoraphobia did not exist, but with the understanding of these mental health developments, it is essential for support workers to adapt their service provision in order to attend to their clients’ preferences and safety.
Difficulties Accessing Social Resources
Six participants explained that they experienced difficulties accessing social resources during the pandemic. Throughout the COVID-19 pandemic, ASOs across the Ontario shifted their service delivery strategies multiple times to comply with provincial lockdown guidelines and regulations. This included changes to food programs, drop-in space capacities, and working hours. During lockdowns, Trellis closed their offices and transitioned to remote work for staff. Prior to the COVID-19 pandemic, Trellis clients were able to access services, clothing, and a food stand regularly. With the office closed, clients had to coordinate with their support workers to access these resources. In her interview, Frankie talked about the impact this disruption in visits from her support worker caused in her life. When discussing the transition to speaking to her support worker on the phone instead of in person, Frankie stated, “it’s hard to get a hold of her, like if I’m feeling down or something.” Frankie compared this to her experience before the pandemic, “when you’re used to have [your support worker] come at least once a week and seeing them. This disconnect in access to Frankie’s support worker left her without resources and support at times throughout the pandemic.
Another participant echoed difficulties in accessing the monthly funding that clients at Trellis receive. In the interview she shared that:
The accessing of funds we received each month, that put a damper on things – that money helps with my physio because I have disabilities. I used it for my physio or extra groceries or laundry – whatever I needed that month. So, the months that we had lockdowns, it was hard. (Aryanna).
One interview participant shared that his “medication ran out four months ago and despite phone calls back and forth…I have had no calls back from the clinics out here, so I still have no medication…I have no way of knowing if this is going to be fixed” (Dax). Dax’s experience highlights the impacts of disruption in service provision, which has affected the continuum of care amongst many HIV positive individuals due to the inability to access the resources they previously relied on to live. With the increased difficulties in attempting to access services, PLWH were left with limited supports and often went without essential resources due to an inability to access support in a timely manner.
Disruption in Medical Care
In addition to difficulties in accessing social services, five service users discussed experiencing disruption in medical care throughout the COVID-19 pandemic. Frankie shared that she “was supposed to have a bone density test…and they cancelled it. I was trying to get in for a mammogram and pap smears because I couldn’t – didn’t have my regular doctor because he had a stroke”. Aubrey A. stated that their psychiatrist “abandoned her clinic, moved back to Toronto, but she did not renew scripts, did not do anything.” This disruption in care led Aubrey A. to “cold turkey [their] meds again. [They] didn’t tell anyone and this was March, [during] the third lockdown.” Dax also elaborated about his medical care in his interview, explaining that when COVID-19 hit,
I never got to see the doctor, and the doctor has disappeared, I can’t find them; and now I’m stuck because apparently, they can’t transfer files or whatever. So, they don’t have me in Hamilton anymore and I got nobody here in Kingston. Basically, I am without care whatsoever (Dax).
While some participants missed out on screening appointments, others went without adequate support to refill prescriptions. The pandemic disconnected PLWH from integral supports, leaving them without the resources they require to maintain their mental and physical health.
Inability to Connect with Others
Seven participants expressed sentiments of illness and isolation, stemming from the inability to connect with others coupled with worsening health outcomes. When the Trellis office closed their drop-in space, service users lacked a safe environment where they could socialize and connect with others with shared experiences. In his interview, Dean shared the following regarding isolation throughout the pandemic: “the isolation hasn’t been easy, the isolation on top of it all. It’s when you get older like this, the isolation kind of gets to you by times, but I’m trying not to let it get me down. But some days is harder than others, you know.”
Amidst the various COVID-19 regulations, Pumpkin found it difficult to decipher between what rules applied to her situation. Throughout the pandemic, Pumpkin was living with various friends and family, while searching for more permanent housing. In her interview, Pumpkin said, “I’ve had a hard time even going and seeing my son. Wasn’t allowed. But everybody said you’re allowed to go see family.” Pumpkin also shared that she volunteers at Trellis and views the organization as “Family, just like family. Just, I think of ‘em like family. All of ‘em”. The variance in the office’s capacity and hours has impacted her ability to volunteer throughout the pandemic, something that she deems to be a rewarding experience. Aubrey A. also shared in their interview that lockdowns were, “isolation and solitary confinement, which is torture”.
The PLWH interviewed expressed the hardship they experienced throughout the pandemic. Overall, social distancing and quarantine requirements resulted in increased incidences of isolation, and disconnected PLWH from others who share their experience, and from whom they could seek support and comfort.
Experiences of Service Providers at ASOs
Semi-structured interviews were conducted with eight service providers: two support workers, three program coordinators, and three executive directors. All participants had been working in the ASO sector for more than 9 years. Three main themes were identified from the interview data: changes in organization function, barriers to client management, and fatigue in staff members.
Changes in Organization Function
ASOs adopted different operating practices to comply with COVID-19 restrictions and regional public health guidelines. On service provider shared that,
We did make a few modifications that impacted us. So, the agency was and still is closed to in-person drop-ins. So, the front doors have to be locked and then when clients need to come in, we have a separate room for them, where they make an appointment, they come into that room, then the room is cleaned afterwards, and everybody has appropriate [personal protective equipment] PPE (SP2).
Another service provider utilized a spaceship analogy to conceptualize the change in function that their organization experienced once the COVID-19 pandemic was announced. They shared that:
I feel like our agency was a well-functioning spaceship that had an immediate and urgent crisis, and I had to shoot out all of the life pods out of it and now I’m just drifting through space trying to collect where everybody went and reconnect them to the mothership, so to speak, and do so in a way that still makes people safe (SP4).
In discussing changes to organizational function, service providers also noted increases in workload demands experienced since the onset of the pandemic. SP7 explained that there “has been a lot more creativity on our side helping the clients identify exactly what their needs are and how do we prioritize to respond.” Further, SP7 shared that tasks that once took only an hour to complete were requiring support workers to “spend three to four times the number of hours that would normally [be] spen[t] when with [clients] face-to-face.” Changes in organization function and the ways in which service providers support their clients has been a taxing experience for service providers, leading to fatigue amongst staff in the AIDS sector.
Barriers to Client Management
Along with changes in organization function, service providers also had to address and manage their interactions with clients despite encountering unprecedented barriers. Working with some of the most vulnerable members of their community, service providers had few resources available to connect with their clients on a regular basis. SP5 explained:
There was a break in services for sure, because we immediately closed our doors…but for the counsellors, we couldn’t meet with our clients anymore. So, really it caused a problem because a lot of my clients don’t have phones, or they only intermittently have phones. So, I couldn’t actually have contact with them regularly and I certainly couldn’t meet with them. So, there was a real break in services there.
Coupled with the lack of ability to connect with clients via telephone, other service providers discussed difficulties with conducting medical follow-ups on Zoom: “COVID-19 has affected our education, now it's all Zoom calls. But not everybody has access to Zoom” (SP6).
Another barrier that a service provider discussed was the closure of their HIV clinic. This posed barriers to client management as service providers had, “concerns and fears that people living with HIV may not be consistently filling their ART prescriptions; following up on things like their lab work….or other things to help manage comorbidities…” (SP4). Further, service provision was difficult for providers with precariously housed clients as indicated by SP3: “they don’t have cellphones necessarily, or access to computers. Where they used to, because libraries were open…they can’t use the traditional areas where they could communicate with us and us with them, have all been shut down.” This quote evidences how PLWH have been disconnected from their usual sources of information and support due to closures imposed by the COVID-19 pandemic. Without adherence to ART, PLWH will experience greater health concerns and have the ability to transmit HIV to others.
When a client needs a referral, ASOs play an integral role in this process, connecting them to other community-based organizations or health care providers. However, with the dynamic nature of the COVID-19 pandemic, many community-based organizations were either not open or had extensive wait lists to access services. One service provider shared:
There is nowhere for them to go during the day to have social support, there is nowhere for them to get to get counselling or other kinds of supports. It’s really difficult for them to go and access food supports, everything. So, what COVID-19 has done, it has made it incredibly difficult for [service providers] to actually do [their] jobs. You can’t be an HIV support worker and work from home, it’s not possible to do that. So, people are being seriously underserved and two years in, the problems have all accumulated. So, now it’s not a simple crisis that somebody’s coming in for, trying to access [a service provider] for, they are really complicated problems and there are no real solutions (SP5).
Fatigue in Staff Members
Working amidst a global pandemic has brought unprecedented challenges into the workplace, but when tasked with serving an extremely vulnerable population, efforts made by service providers can become taxing on mental and physical health. Service providers that have had to transition working from home have experienced difficulties as shared by SP3 in their interview. SP3 discussed that, “[working from home] has impacted some staff in terms of mental health…it takes a toll on folks because many of them don’t like working from home, but do, and they’re not the same since.”
Another service provider talked about the impacts of the pandemic on marginalized populations before discussing their positionality as a service provider:
I don’t work with people that feel very connected to the greater society at the best of times, but COVID-19 has really exacerbated that…For somebody as privileged as myself, who has a nice home, I’ve got a job, I’ve got all kinds of supports. I’m absolutely exhausted at this point in the pandemic, and I’ve got all these great things in my life, and my clients don’t (SP5).
SP7 discussed the desire to obtain more funding to ensure that their employees could be making ameliorated salaries. SP7 stated that:
I would love to see where even from a fund perspective they are willing to adjust salaries and our sector salaries since they are much, much lower than market rates. So, people doing the same work that we offer are being paid much more, and that was one challenge that we faced. People leaving the job because it’s so demanding and fatiguing to go to another job that’s less demanding and pays a lot more.
With limited resources and constrains on service provision, support workers working at ASOs have undergone an increase in occupational stressors throughout the pandemic. In order to ensure that ASOs do not continue to lose employees that are integral to not only the organization’s function, but to the well-being of the clients that they serve, adequate resources and compensation are required. Further, mental health supports and professional development opportunities need to be given to ensure that support workers can be at their best for themselves and their clients.