Of 30 MEMO participants called, eight declined and 22 consented to participate in qualitative interviews. Of these, 14 interviews were conducted during the time frame of interest (the first wave of the COVID-19 pandemic) and are included in this analysis. The median age of participants was 49 years (interquartile range (IQR): 27–82). Nine participants were female, four were Hispanic, four were non-Hispanic White, four were non-Hispanic Black, and one identified as other race. Most participants were unemployed (n = 9) and had completed at least 12 years of school (n = 12). Five participants reported either prescribed or non-prescribed opioid use during the 30 days prior to their survey visit closest to the qualitative interview, and only 2 participants used tobacco. The most commonly reported pain locations were the back (n = 11) and the knee (n = 10); nine participants reported having pain in four or more body sites. The median PEG-3 score was 7.66 (IQR: 0–9.66), with 12 participants reporting moderate to severe pain. Five participants reported clinically significant insomnia, four participants reported moderate to severe symptoms of anxiety, and six participants reported moderate to severe symptoms of depression. Four participants reported infrequent medical cannabis use, 5 reported occasional medical cannabis use, and 5 reported frequent medical cannabis use. Overall, the demographic and clinical characteristics of participants interviewed during the COVID-19 first wave (n = 14) and participants who declined or were interviewed prior to the COVID-19 pandemic (n = 16) were similar (see Table 1).
We identified three themes: (1) disrupted access to health care, (2) disrupted access to medical cannabis, and (3) the mixed impact of chronic pain on social isolation and mental health. In addition to the quotes presented in the text below, other quotes that support our findings are included in Supplementary Material 2.
Theme 1: Disrupted access to healthcare
Participants described disruption of the continuity of care and overall access to healthcare services due to the COVID-19 pandemic. They were often unable to reach their usual clinicians or receive timely care for their symptoms, including pain as well as other acute, sometimes life-threatening, conditions. Public health messaging during the first wave stressed the importance of staying home unless experiencing symptoms needing emergent evaluation. Patients were therefore often tasked with determining for themselves whether they should seek out urgent or emergent care without input from their primary care providers. This proved particularly challenging for participants in this study who experienced chronic pain, were living with multiple medical and psychiatric comorbidities, and often faced already-existing socioeconomic and race/ethnicity-related barriers to care. For example, one participant recounted:
I started having increased shortness of breath and an increased heart rate. And my oxygen levels have gone down a little bit the night before. So, I think I probably have pneumonia and I need to be seen. And I emailed the doctor and, you know, by the time they answered me, I had already finished with urgent care. (Participant #4)
During the first wave of the pandemic, routine in-person care and procedures determined to be “elective” were canceled or indefinitely postponed by state decree. Participants described how their symptoms worsened as a result of inability to access care. For example, one participant said:
I’m very much in pain now, I can hardly walk. That’s why I went to the pain management doctor last week, and he said that there’s a restriction on surgical procedures in the state right now because of the coronavirus, that he can’t – he couldn’t help me. He told me to see him again in a couple of months. (Participant #5)
To reduce the risk of exposure and spread of COVID-19, many healthcare services transitioned from in-person visits to telemedicine. While this allowed patients to interact with their clinicians without potentially risky face-to-face contact, some participants struggled to access adequate and timely care and described limited communication with healthcare providers. Some participants lacked digital literacy, making telemedicine impractical and unobtainable for them and adding more barriers to care and subsequent frustration. Some even felt that they were ostracized and unwanted in the setting where they usually received medical care.
No one’s answering back. It’s just – it’s frustrating, you know… Everyone is either working from home or being displaced or, you know, the doctors aren’t even at the doctor’s office. And I’m trapped in a room with no fax machine and no scanner, and I have to teach myself how to do these things with my phone. And I have limited mental capacity and it’s just – it’s frustrating. It’s very frustrating. (Participant #4)
Theme 2: Disrupted access to medical cannabis
Participants described multiple barriers to access to medical cannabis, including many that predated the COVID-19 pandemic, for example transportation and time barriers related to accessing the few existing dispensaries. In particular, many participants identified cost as a major impediment to medical cannabis access, especially given the lack of insurance coverage for medical cannabis products.
The cost is a lot. It’s expensive…. So, yeah, if you can’t afford it and your insurance is not paying for it… like, my daughter for instance, my daughter is really sick, she has neuropathy in all of her body. She got a [medical cannabis] card, took her with the card, but she’s on SSI, she can’t afford to go. She can’t afford to go get the marijuana because she can’t afford to pay for it. (Participant #13)
These barriers grew more acute during the pandemic, including the limited availability of medical cannabis dispensaries across geographic locations and cost barriers to purchasing medical cannabis. Although dispensaries were deemed an essential service in NY and were therefore allowed to remain open for business, most were open only for pick-up or offered deliveries at additional costs to encourage social distancing. Participants had difficulty navigating these barriers and expressed difficulties accessing their medical cannabis.
[In the past,] I’d managed to get a friend to drive me to a dispensary to get a refill, and thank goodness. Now, everyone, I mean, some places are like, “We can deliver.” But I can’t actually afford that delivery. It’s too expensive, you know? Other places are like, “We’re only open for pickup.” And I’m like, “Well, I can’t go out, pick it up, because I can’t walk.” … Now, my friends can’t come out and drive me anymore, so, I can’t go anywhere. (Participant #14)
In response to increased barriers to medical cannabis during the pandemic, participants responded by reducing or even stopping medical cannabis use, or switching to unregulated cannabis. Participants who experienced financial hardship related to the pandemic reported reducing medical cannabis use or stretching out their supply to reduce cost and make ends meet. One participant stated:
Since this coronavirus, money’s been, you know, on the low. I still have [cannabis] oil. So, I’ve been kind of like limiting the oil a little bit and I only take it when I feel like I can’t endure the pain. So, I take it — rather than just take it whenever, you know, actual like, you know, — you have to take it like how you take your pills. (Participant #10)
Another way in which participants responded to increased barriers to medical cannabis during the pandemic was supplementing their medical cannabis with, or switching entirely to, unregulated cannabis.
The delivery fees are very expensive. So, that kind of puts me in a position to where, I know, I kind of buy it off the books, so to speak, and get marijuana instead of medical marijuana. (Participant #12)
Several participants noted that they switched to medical cannabis from unregulated cannabis to use cannabis products that were safer and that were more socially acceptable. Medical cannabis products in NY were oil-based during these interviews and were described as causing less of an odor and provoking less stigma from community members.
As far as just the coughing…, I’m going to stay away from doing that, because .. people are automatically assuming that you have coronavirus, when it’s really smoking. But … with the vape, it’s not a lot of coughing. (Participant #12)
Switching back to unregulated cannabis was a source of disappointment and increased risk of becoming exposed to cannabis products contaminated with heavy metals, pesticides, or other drugs and cannabinoid content that was either mislabeled or not labeled at all.
Theme 3: Mixed impact of chronic pain on social isolation and mental health
Participants’ refractory chronic pain and comorbidities shaped the way they experienced the COVID-19 pandemic’s first wave. Participants described that their illness and impaired mobility had resulted in social isolation well before the pandemic. In some ways, they felt equipped to cope with the social isolation imposed by the pandemic.
I’m at home anyway. I’ve been social distanced for two years now. You know? I mean, I don’t go out. I don’t go anywhere. I have a home health aide and I just don’t get out and neither does my wife anymore. (Participant #1)
Some participants described how learning to live with their chronic health conditions and the resultant social isolation contributed to a sense of resilience, so much so that participants felt less impacted by the loneliness experienced by many during the pandemic. Participants expressed hope that the social isolation faced by the general population during the first wave of COVID-19 would allow others to understand the daily experience of chronic pain patients:
I’m welcoming the world to my life. The whole quarantine and social distancing thing – it was like, this is my life anyway. (Participant #11)
In contrast, some participants described worsened mental health symptoms during the pandemic, ranging from boredom and agitation to exacerbation of depression and anxiety symptoms. They related this to social isolation and the uncertainties of the pandemic:
I can say the anxiety and depression, yeah… It’s gotten worse. I definitely can say that… You know, you can’t get around, you can’t see people, you can’t talk, you can’t release. So you just holding in everything. (Participant #9)
Participants who lived alone were especially vulnerable to anxiety that was intertwined with loneliness:
I’m by myself, like, 95% of the time. So, that, in itself, causes anxiety. (Participant #3)
Many participants described their fear of becoming infected with COVID-19. Of the 14 interviewed, three participants were either sick with COVID or recovering from it during the interview. These participants were attuned to the health risks of COVID and grateful that they did not require admission to the hospital, but they also felt guilt that they were not on the frontlines with their communities and co-workers who were facing the pandemic.
I see my coworkers suffering and I can’t be there. I have this guilt that I’m here in a bed and they’re working and doing the best they can and I’m not there. (Participant #4)
Those with medical comorbidities worried that they would be particularly vulnerable to severe manifestations of the virus; others described concern about how they would be able to maintain their daily responsibilities if they became sick.
When I do go outside, I wear the mask around my face, because with the autoimmunity disease I have a really low immune system… Of course I get scared. But I think about myself and try to avoid getting sick and then, being in the hospital with all the sick people and then getting exposed. So, I do worry much about that. (Participant #10)
More generally, participants pointed to the terrible circumstances caused by the pandemic. Several expressed their sorrow for so many who got sick and for many others who died, as well as for the societal and economic situation. Living in NYC, which was an early epicenter of the pandemic, participants were likely to know people who got sick with, or who died of, COVID-19. One participant said:
What’s really bothering me is the amount of people who are dying… So many people I know whose relatives or somebody has died because of this; and my godson, he’s 39, he’s been on a ventilator for a week now. (Participant #2)
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