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A retrospective chart review and thematic analysis of patients seeking mpox vaccination during the initial outbreak in 2022–2023: evaluation of access, motivations, and stigma
ӣƵ volume24, Articlenumber:3436 (2024)
Abstract
Background
Mpox was identified in many previously non-endemic countries, including Canada, as of May 2022. In response to the increase in cases in Canada, and more specifically the province of Ontario, the vaccine Imvamune was rolled out. Eligibility was governed by provincial health authorities, and the response varied by region. In addition, because eligibility language was describing certain types of sexual activity, there was potential for harm. The aim of this study was to further explore the experiences of vaccine recipients as it pertained to obtaining the vaccine, access to information and vaccination, self-assessment of risk, perspectives on vaccine rollout, stigma, and community support.
Methods
As a part of care, a clinic in downtown Toronto, Ontario, began hosting mpox immunizations clinics between July of 2022 and March of 2023 with a standard set of clinical intake questions. Following this period, we conducted a retrospective chart review of 113 Imvamune vaccine recipients. Both descriptive quantitative data and thematic qualitative analysis was completed.
Results
One hundred thirteen patients received one or two doses of Imvamune between July 2022 and March 2023. The average age was 49 (range 17–78). Patients were not asked sex or gender; however, 111 patients had a male sex listed on their health card and three female sex, one of whom self-identified as a transwoman, with the remainder not having had their sex inputted into their medical records. Through descriptive thematic analysis, this study found the following recurrent themes mentioned by patients in the data set: 1) eligibility, 2) rollout and access, 3) mis/information in the media, 4) stigma.
Conclusions
There is little Canadian data on mpox vaccine rollout beyond epidemiologic and cohort information. Understanding the difficulties and stigma that were faced by vaccine recipients is crucial to ensure that when a public health initiative is initiated, that past traumas are not replicated. This study provides valuable patient perspectives in how to improve ongoing rollout, as well as how a campaign that includes a sexual health component may be more sensitively considered in the future.
Background
Mpox (as renamed by the World Health Organization, formerly known as monkeypox) is a zoonotic virus that was first identified as causing disease in humans in the 1970s [1], and has continued to circulate in multiple regions of Africa. Mpox was largely absent from Western public health discourse until it began impacting primarily gay and bisexual men who have sex with men (gbMSM) in non-endemic countries with the first cases in 12 non-endemic countries in early May 2022 [2]. Since then, the clade II outbreak has spread to 122 countries (115 of which had not been historically affected by mpox), with over of 100,000 cases [3]. North America was largely affected by clade II, and cases were confirmed as early as May 2022. Then on November 16, 2024, the first clade I case was confirmed in the United States, with additional travel- related cases since in eight other countries including Canada [3]. As of November 29, 2024, there have been 1,919 cases in Canada, concentrated in two provinces [4]. In Canada, healthcare is delivered regionally/provincially, and thus the rollout of preventative measures is also facilitated provincially. Ontario, Canada’s most populated province, has had approximately half of all cases [4].
The Imvamune vaccine has been shown to prevent infection, likely proportionately to the number of doses received and time since vaccination [5, 6]. Recent studies indicate a 2-dose regimen of the vaccine has been found effective in preventing mpox infection, with those who are unvaccinated having an increased risk 7.4 times those with a single dose and 9.6 times those with two doses of the vaccine, the latter schedule being currently considered a complete mpox vaccination [7]. In the spring of 2022, The Government of Ontario, Canada, released doses of the vaccine that had been stockpiled and allowed for use among certain populations. Specifically eligibility included gbMSM who: “had a confirmed sexually transmitted infection within the last year; have or are planning to have two or more sexual partners or are in a relationship where at least one of the partners may have other sexual partners; have attended venues for sexual contact (i.e., bath houses, sex clubs) recently or may be planning to, or who work/volunteer in these settings; or have had anonymous sex (e.g., using hookup apps) recently or may be planning to; and/or are a sexual contact of an individual who engages in sex work” as well as any person who engages in sex work or plans to regardless of gender identity, are eligible for the vaccine [8].
Although vaccine rollout varied by region, and did change over time, the impact of eligibility has yet to be examined. In addition, why individuals chose to be vaccinated, how individuals became aware of vaccination and vaccine eligibility, and whether risks matched eligibility is unknown. Furthermore, at the beginning of the outbreak, certain communities, were highlighted as most at risk. This may have been with good intentions to prioritize vaccination but may have also resulted in increased stigma. To this end, the present study uses retrospective chart review to describe narratives on social stigma from patients seeking vaccination. This work has implications for healthcare providers working with the populations impacted by mpox, and for health policy makers, with recommendations discussed.
Methods
Setting
At a clinic in downtown Toronto, Ontario, a non-publicly funded, but free mpox vaccine clinic occurred almost weekly between July of 2022 and March of 2023. The opportunity to receive mpox vaccination in this clinic was made available on the Toronto Public Health/regional website (along with other clinics offering vaccination). Individuals then self-referred and booked an appointment. In the past this clinic has been used for sexually transmitted and bloodborne infection testing, HIV prevention clinics, hepatitis C virus treatment, and COVID-19 testing. Individuals did not need to present a healthcard to demonstrate Ontario or Canadian healthcare coverage.
Retrospective chart review
A retrospective chart review of all individuals who received 1–2 doses of mpox vaccine from July 2022 to March 2023 were included in a self-referral vaccine clinic in downtown Toronto. Ethics approval was granted by Western Ethics Review Board (WREM 121973) to complete a retrospective chart review of 113 patients who sought mpox vaccination. Patients either received their first, second, or both mpox immunizations between July of 2022 and March of 2023 in this clinic. All questions asked were in the context of clinical care and education, as well as supporting health promotion, systems navigation, and inquiring about stigma experienced during the outbreak as a part of comprehensive care.
Thematic analysis
We used chart review and recorded answers into an excel template from the chart into categories for each question. The analysis began with demographics and quantitative data, followed by qualitative thematic analysis [9] of narratives from patients.The process involves six phases: familiarization with the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and producing the final report. This analytic method does not prescribe a specific theoretical framework, allowing it to fit well within the nature of this qualitative descriptive work [10, 11]. Generating codes was conducted manually by one researcher (KM), which was justified given the small and structured data set. Three researchers with content and research expertise met to discuss, review, and define the themes (KM, KC, MB). Group engagement allowed for refinement, reflexive thought, and to build consensus about the meaning of the data [12, 13].Themes discussed include: 1) eligibility, 2) rollout and access, 3) mis/information in the media, and 4) stigma. Thematic analysis was chosen to allow for commonalities across the dataset to be found so that common concerns raised by patients can be identified and addressed by healthcare providers and health policy makers.
Results
Cohort description
The average age of patients at the time of vaccination was 48.6, ranging from 17 to 78. Patients were not asked about sex or gender; however, (97.3%) (n = 110/113) patients had a male sex listed on their health card and three had female sex, one of whom self-identified as a transwoman. While patients were not asked their sexual orientation, 33.6% (n = 38/113) patients self-identified as men who have sex with men. Two of the three female patients mentioned that they were sex workers but none of the male patients. 51.3% patients (n = 58/113) indicated that they were comfortable asking partners about mpox vaccination, eight were not comfortable doing so, and the remainder were not asked. In terms of prior smallpox vaccination, 12.4% (n = 14/113) patients had previously received the vaccine in childhood. No patients showed symptoms at the time of vaccination, but one person had a prior mpox infection. Questions were asked about positive contacts to determine whether the vaccine was pre- or post-exposure, and 32.7% (n = 37) of patients had a known contact who had mpox, three of which were sexual partners. At times patients were not asked all the questions due to patient preference.
Vaccine eligibility
Risk factors in the context of vaccine eligibility were discussed, and 73/113 patients reported sex as their primary risk factor (64.6%). Seven patients discussed having sex at bathhouses, and with multiple partners. Four patients were in open relationships and felt it was important to protect themselves and their partners. It is also notable that 11 patients indicated that they had very low risk sex, and 10 were not currently sexually active despite seeking vaccination.
Vaccination rollout and access
Vaccine recipients were asked how they felt about the vaccine eligibility criteria, to address any negative experiences that may prevent them from going for the second dose, or doses in the future. Only 39.8% (n = 45/113) of people felt that risk-factor screening was the most appropriate approach and that those at higher risk should get the vaccine first. Of the remaining, 16.8% (n = 19/113) felt that the vaccine should be available to the public. While most people were local (from the region of Toronto), several people travelled hours, one was from out of province, and one was from out of the country. Each cited the vaccine was unavailable in their region, or they would be stigmatized for getting the vaccine.
Mis/information and the media
Of the vaccine recipients, 21.2% (n = 24/113) had heard about mpox and vaccine eligibility through the media (all types). Seven felt that media discourse decreased between the time between their first and second dose of Imvamune, and eight reported that second doses were not well advertised and that it was difficult to get information on when they would become available.
Some patients described the media as being partially responsible for spreading stigma. One patient explained, “I have heard people complain about how it was handled in the media suggesting that gay men and black folk were responsible for spreading it”. Some felt that there was a lack of education on things like transmission and that there was little effort put into awareness campaigns. A patient stated:
“There are misunderstandings about how it's transmitted, similar to how many people do not understand how HIV is transmitted. Education is needed in and outside the community. There are many narrow-minded people. We need to educate the public as much as possible. There should be posters in subway stations. There is more public health work to be done.”
Stigma and community support
We explored stigma in the context of the clinical visit understanding that many people may have already had negative experiences during the mpox outbreak. Overall, 48.1% (n = 50/104) felt that there was anti-gay stigma surrounding mpox. One patient did not tell anyone at his workplace that he was getting vaccinated for fear of what they would think. One recipient cautioned that the framing of this as a gay disease can even prejudice people who “are not already biased”, while another stated that there was discourse that this was a “gay men’s disease,” and that we were “going back to the dark ages”.
Notably, 14.0% (n = 15/107) of patients made connections to the HIV/AIDS pandemic within the clinical discussion, though mpox and HIV are very different viruses, and differ in terms of acquisition, prognosis, and mortality rates. Discussing how the outbreak was blamed on gay men and black communities, one patient stated,
“It (mpox) could develop to be as bad as things were during the early AIDS days with the stigma and the lack of knowledge and understanding”. Another patient discussed his experience of living through the height of the AIDS pandemic:
“I think the risk is understood to be at this point not great, but people of my generation connect it with HIV and AIDS and it's an echo of that, so I think that it's been treated amongst people of my age as a pretty important thing because we have a history of an unanticipated virus…”
Another patient stated similarly, “gay men have been through all this before, this isn’t our first rodeo.”
Some patients connected shifts in stigma to current events. One mentioned that shifting priorities may have made a difference:
“There's not much worry about mpox amongst straight people because I think in their minds, like the AIDS crisis, they think it's a gay disease. I think it's gotten better, but not improved, just that its priority has dropped in the general public's mind due to issues around other things like bivalent COVID-19 shots.”
There was also mention of how mpox was being used by right-wing religious groups to further target queer communities:
“I go on different blogs, and I hear comments from religious groups in the States using the Bible to condemn gay people saying that this is part of God's wrath. It's giving them a license to hate anyone they don't like citing Bible verses. I hear a lot of things about right-wing militants in the US targeting drag queen story times with AK-47s at libraries claiming to rescue kids. Thinking that mpox is a curse that they have to save people from.”
There were concerns about racism amongst patients. One person felt that people in the Global South were at risk of being blamed for the outbreak, in a similar way in which people of colour have been connected to HIV/AIDS. Patients made connections to anti-Black racism. One patient noted the resilience of Black communities, stating, “the Black community is already ready to take care of our bodies.”
Two patients also mentioned anti-sex work stigma. Across various forms of stigma, some felt that the stigma improved between the time when they got their first and second doses, while others felt that it remained the same.
Perspectives on available community supports varied amongst the cohort. One person stated that there were not adequate community supports for women, and very few were able to name specific supports available. A patient from outside Toronto highlighted that there was very little support in regions outside of the major cities. Even within Toronto, only three individuals felt support was available from sexual health and LGBTQIA+ organizations, while six individuals stated they would turn to their HIV prevention or primary healthcare provider for guidance.
Discussion
The mpox outbreak of 2022 was of significant global importance and led to the use of stockpiled vaccines in countries where there was availability and infrastructure to rapidly rollout vaccine programs. In Canada, vaccine rollout varied greatly by region, with more concentrated programs in regions with the most cases such as Toronto, Ontario. We completed a retrospective chart review and thematic analysis to better understand the vaccine recipient perspective. This was done because especially post-COVID-19 we recognized that the decision to be vaccinated was not based solely on efficacy, protection, or public health good; but that access, environment, and community experience is of crucial importance. Our study highlights that not all who were vaccinated were motivated due to so as a result of potential sexual exposure to mpox, but rather because of interest in health promotion. Some recipients felt it was of such great importance to obtain vaccinations and/or to maintain confidentiality, that they were willing to travel hours or even to another province. In terms of access, there was not a consensus among recipients in that some felt risk-based vaccination was appropriate due to limited stock, while others felt vaccination should be available to everyone. Finally, the themes of misinformation and stigma emerged, where transmission via certain groups, and stigmatization mirrored the early days of the response to AIDS, where public health interventions further stigmatized communities. These findings are summarized in Table1 and Fig.1.
During COVID-19, a phased vaccine rollout was used in Ontario, with specific eligibility criteria to allow those with certain risk-factors for infection to be vaccinated first in the context of a limited vaccine supply. This was repeated with mpox. In our cohort of vaccine recipients, the average age at the time of vaccination was 48.6, ~ 34% identified as gbMSM. Hatami et al. (2023) conducted both a systematic review and meta-analysis of studies involving mpox-confirmed patients over the 10years before and during the 2022 mpox outbreak. They found that gay and bisexual men accounted for a pooled frequency of 93.5% and were reported only in post-2022 studies, though it is important to note that prior to this outbreak many patients may not have been asked their sexual orientation, and that prior to 2022, outbreaks many not have occurred as often in high-income countries such a Canada [14]. Male gender was predominant throughout all years studied and the mean age was 29.92years [14], a much younger cohort than the recipients in our study. Interestingly, in addition to travelling for the vaccine, many recipients thought the process should be more streamlined, and that other barriers existed beyond distance and travel. In our study, one recipient’s quote highlighted that he could not be open at his workplace about receiving the vaccine as this risk was not well understood and was being compared to HIV acquisition. This has also been seen in the literature and compared to the early days of AIDS. For example, Pitts, Kottkamp, and Mgbako (2023) discuss how many patients reported a fear of being seen at mpox vaccination sites due to the possibility of being outed as gay, creating a barrier to vaccination that further demonstrates the consequences of stigma on healthcare-seeking behaviours [15].
While there has been research examining vaccine efficacy in the context of the recent outbreak [16,17,18], as well as efforts to increase vaccine uptake [19], little is known about social factors related to stigma against men who have sex with men and other at-risk communities such as sex workers; as well as the accuracy of patient knowledge on mpox in the face of widespread misinformation. Keum et al. (2023)found that an increase in homophobic tweets on Twitter coincided with an increase of tweets related to mpox during the outbreak, including hashtags such as #gaypox and #pridepox [20]. Ogoina and James (2023)explain that there is very little data on mpox in sex workers, especially female sex workers [21], and Landers et al. (2022)explain how racism has impacted perceptions of HIV/AIDS, mpox, and COVID-19 [22]. Considering the small number of individuals in our study who identified as being engaged in sex work, additional outreach and research in this area is needed.
The most striking theme found in our analysis was the overwhelming stigma experienced by mpox vaccine patients. Understanding the stigma associated with a disease is crucial as this can shape the response to it, including vaccine uptake. In the case of mpox, this is a disease where the importance of investigating stigma cannot be understated. For example, it is notable that the name change to "mpox", intended to decrease stigma against African communities, was made 50years after the virus’ discovery, and only when it began spreading to gbMSM, who benefitted little from the change in name. It has since been described that the naming issue around mpox is resonant of the early AIDS pandemic, as HIV/AIDS was originally called Gay-Related Immune Disease (GRID) [22], a connection that many of our vaccine recipients in this study also mentioned. These statements suggested that misleading headlines may facilitate more views for news outlets. It is not only the news media, but also social media that has spread misinformation. This has been examined in the context of Twitter, where it was found that there was a plethora of inaccurate health information influenced by political bias that exacerbated anti-gay stigma and downplayed the severity of the outbreak [23]. This phenomenon has also been observed on TikTok, where it was found that as of 2022, 154 videos (with a total of 1,485, 911 views) promoted conspiracy theories around mpox [24].
The repeated mention of AIDS and anti-gay stigma by patients who received the vaccine was not surprising. Similarly, others have found comparisons between HIV/AIDS and mpox on Twitter and Reddit, citing homophobic posts as well as posts criticizing homophobia [1, 25]. The intersectionality between HIV and mpox, has been noted, whereby gay men are blamed “for ‘introducing’ the infection into new populations and are considered to have ‘deserved’ the infection due to their sexual practices” [26]. Owhonda et al. (2023)found a high degree of not only community stigma, but also self-stigma among men who have sex with men, with 48% of respondents reporting they would feel ashamed if they contracted mpox, 45% stating they would hide their illness from others, and only 53.4% being willing to seek healthcare if they had rashes, due to the association of the disease with queerness [27].
This research has implications for healthcare providers and for health policy both for mpox and other infectious diseases that impact vulnerable populations. Healthcare providers should approach this work through a trauma- and violence-informed lens, as those in at-risk communities such as gay men, know others that have been infected may experience secondary traumatic stress [28]. At a response level, health policies should ensure that when working on risk-based approaches to vaccination, harmful stigmas are not spread, especially amongst already stigmatized communities. Logie (2022)explains that the stigmatizing discourse surrounding HIV, COVID-19, and mpox demonstrate that we must work towards stigma-informed pandemic preparedness to prevent encountering such difficulties from happening again. They emphasize the need for community sensitization, advocacy, and gay friendly services to reduce stigma and increase access to healthcare [29]. Globally, UNAIDS expressed concern over public reporting on mpox that used language and imagery portraying queer people and Black communities, reinforcing social stigma [30]. Health policy makers should ensure adequate funding for education and awareness campaigns to prevent the spread of misinformation [31]. Finally, further research should examine the unique ways that mpox stigma, misinformation, and vaccine eligibility manifest in a Canadian context.
Limitations
This study has limitations. This study was conducted at a single clinic in downtown Toronto, Canada. By way of this, this study does not reflect all seekers of mpox vaccination in Toronto, or in Canada; only those that successfully booked and attended an appointment. We used the clinical intake questions retrospectively to better understand the experiences of those seeking and obtaining mpox vaccination during the outbreak of 2022 and 2023. As such, it’s not completely descriptive, as some recipients did not answer all questions (as occurs in any clinical environment); nor was this study designed as a qualitative prospective study. As such, the methods for analysis used were in the context of the data available. Despite these limitations, we felt it was of importance to capture these clinical experiences to inform public health interventions for future mpox outbreaks, or outbreaks where there is a sexual health component among communities who are often marginalized and are the most at risk. This study does not reflect the perspectives of all community members. Specifically, as was seen with the initial COVID-19 vaccine rollout, it is important to note that this study reflects those with a high degree of self-efficacy, the ability to travel and attend appointment in the during a workday and use technology to find and book a vaccine appointment. As such, this study may have missed incorporating the experiences of those who may face even more significant geographic or structural barriers to seeking healthcare.
Conclusion
Patients entrust governments, public health responses, and healthcare providers to be aware of how implementation of a preventative health tool such as a vaccine, can impact marginalized communities; and to not replicate traumatizing stigmas and past mistakes. Many vaccine recipients come to health appointments carrying the burden of anti-gay, anti-sex work, and racist discourse. Thus, it is crucial that public health responses and healthcare providers use trauma- and violence-informed approaches when planning and facilitating vaccination programs, and work with communities to avoid replicating and reinforcing harmful stereotypes. Our work highlights how the mpox vaccine rollout in Ontario was perceived by a cohort of vaccine recipients in Ontario, Canada, with several important lessons learned. In particular, the roll of the media and governments in perpetuating misinformation and stigma through types of messaging related to vaccine eligibility and access.
Data availability
The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.
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K.M., C.M., K.C., and M.J.B. designed the study. K.M. retrieved, analyzed, and compiled the data, with supervision from M.B.. All authors wrote and edited the first draft of the manuscript, and all authors contributed thoughtful suggestions and resources, as well as reviewed the manuscript and approved the final version to be published and agreed to be accountable for all aspects of the work.
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Due to the nature of this retrospective study and the preserved anonymity of patients, a waiver of informed consent was obtained. This waiver and ethics approval was granted by Western University Ethics Review Board (WREM 121973) for 113 patients who sought mpox vaccination in a self-referral vaccine clinic in downtown Toronto.
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Muncaster, K., Masterman, C., Barnett, T. et al. A retrospective chart review and thematic analysis of patients seeking mpox vaccination during the initial outbreak in 2022–2023: evaluation of access, motivations, and stigma. ӣƵ 24, 3436 (2024). https://doi.org/10.1186/s12889-024-20948-1
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DOI: https://doi.org/10.1186/s12889-024-20948-1