3.14. RQ2: how did the COVID-19 pandemic affect HIV-related health decisions and behaviors during the study?
depression, palpable, HIV viral suppression, chronic illness
VIRUS, CHRONIC ILLNESS, ADVERSE EFFECTS, SAID, CORONAVIRUS
Participant narratives reflected emotional challenges (fear, loneliness, depression, stress) and clear obstacles to accessing healthcare and social services during the COVID-19 pandemic (“I used to [go to social service center], but now with this Corona nothing is going on. It's horrible. And that made me in a deep depression too because there's nothing to do”). As in many other locations, participants were under stay-at-home orders and physical distancing protocols, which contributed to a disruption in care and services, including medication delivery and drug program groups. Some participants stopped taking HIV medication during the COVID-19 pandemic, and experienced reduced access to substance use treatment and social services. Others increased their HIV medication adherence rate to better protect themselves from the effects of COVID-19. Tracey, a 60-year-old cisgender, heterosexual woman diagnosed with HIV 15 years ago, noted that HIV medication use was abruptly interrupted by the COVID-19 pandemic.I mean I would take them [HIV medication] if I could. […] Coronavirus came out, which hurt me from having my medical [home health aide] to come out to my house and work with me. They used to come out, [check my] pill box, stuff like that. That would help me a lot. And if they weren't here, yeah it caused a lot of problems. And after that hopefully we'll get back in our regiment and be able to come out to my house and things like that. So, we're working closely, hopefully we'll get this thing settled, and I'll be on my meds regularly.These disruption to relationships and services, and the tumultuous sociopolitical context in which COVID-19 occurred, commonly had adverse effects on mental health. Participants reported feeling isolated during COVID-19, and recounted reports of social unrest and violence in the news related to the consolidation of the racial justice and Black Lives Matter movements. Thus, the COVID-19 pandemic often led to or exacerbated depression and sadness. Others found in-person therapy and medical visits difficult to manage because of anxieties about COVID-19, especially being around strangers. In fact, concerns about contracting COVID-19 when living with a compromised immune system combined with the fall-out of managing health needs with COVID-19 were palpable among participants. One participant talked about his struggle in deciding whether or not to continue taking HIV medication while sick with COVID-19. He described the shared decision-making process that unfolded during a phone contact with a nurse who followed up with him as part of outreach. The participant, Mark, introduced above, revealed the uncertainty and stress that health decision-making engenders, particularly when living with chronic illness such as HIV.Well, I had it [COVID-19] back in February, right and when I had it…I had to quarantine in a hotel in New York. My first 3 days being in a hotel and having this COVID, I was like, “I'm not taking this HIV medication. I'm not taking shit.” So, after that day passed, I'm sitting in that hotel room and I'm like literally crying and my mind went back to 1998 and I said to myself, “If I don't take this medication, right, and me having this COVID, my T-cells going to drop.” Because now the COVID is attacking my immune system. I have nothing to fight the virus and I have COVID. A nurse calls me on the phone, and she said, “How you doing, Mr. [name redacted], with the COVID?” I said, “I'm not doing well.” And we talked about HIV medication. She said, “Let me explain something to you, OK? Take the HIV medication because it will help you. Because if you stop taking the HIV medication, the COVID is going to attack your immune system.The risk of contracting COVID-19 commonly motivated participants to resume HIV medication use, if possible, for fear of the effects of COVID-19 on health while living with HIV. The S-CAP2 study was a source of information for participants to better understand the potential effects of not taking HIV medication. Mark noted how support from a health care professional became the catalyst for improved medication adherence, which helped him reach HIV viral suppression.In general, participants' narratives demonstrated the challenges of HIV-related health decisions particularly in a disrupted healthcare environment. Although the desire and motivation for HIV viral suppression were generally high, participants discussed how barriers to and interruptions in HIV care may derail their HIV management efforts, but also how they often reprioritized HIV medication and their HIV care with ongoing support and encouragement, including through the S-CAP2 project activities.