Communicating about risk for sexually transmitted HIV on the front lines in Ontario, Canada.
KEY WORDS: Community, health communication, HIV, qualitative, risk communication
Human immunodeficiency virus (HIV) remains persistent globally (Bourgeois et al., 2017; Centers for Disease Control [CDC], 2018; European Centre for Disease Prevention and Control [ECDC], 2017; Public Health Agency of Canada, 2018). Although there is currently no scalable or widely accessible cure for HIV, there are extremely effective pharmaceutical measures for reducing transmission and slowing the progression of the virus: pre-exposure prophylaxis (PrEP), post-exposure prophylaxis (PEP), and highly active antiretroviral therapy (HAART). Thus, a major public health challenge for HIV in the modern era is to disseminate critical information about the prevention of HIV to those most at risk, and to ensure that those who are already living with HIV have reliable access to treatment, care, and any other supports needed. In many regions, including Canada, sexual transmission of HIV is the most common route (Public Health Agency of Canada, 2012). Thus, the current study focused on the importance of effective communication primarily regarding sexually contracted HIV risk, while examining the barriers to communication about HIV experienced by those working in HIV prevention more generally. This line of inquiry is essential, as access to valid and relevant information about HIV is critical to making informed choices in support of sexual health and wellbeing.
The individuals who take a primary role in disseminating information about HIV to the public are on the 'front lines' of HIV communication work. In this paper we will refer to these workers, who are typically supportive but peripheral to the formal healthcare system, as 'front-line workers.' (1) Front-line workers are commonly individuals who develop and/or carry out programs targeting HIV prevention and support in various community settings. In Ontario, Canada, this is most often through AIDS Service Organizations (ASOs; View from the Front Lines, 2016). These individuals can be peers of those affected by HIV, students, or volunteers; in fact, registered health professionals compose only a fraction of this workforce (View from the Front Lines, 2016). As part of a primary point of contact with the public and often the main communicators about HIV risk, front-line workers represent a vital conduit through which the work of scientists and other knowledge producers is translated into practice.
Abundant and high-quality communication about HIV risk ensures the connection between knowledge producers (researchers, health professionals, etc.) and users is correctly and appropriately maintained. Furthermore, ensuring that front-line workers have accurate and up-to-date information about HIV risk and ensuring they are using the best methods for communicating about HIV are both essential components that will lead to better control over the prevalence and incidence of HIV. The utility of effective health communication, in particular, is well demonstrated by the work of Kaufman et al. (2014), who implemented a risk communication and behavioural change program in Malawi, Africa. Their results showed a significant increase in condom use and HIV testing among those who participated in their behavioural change program-a program with effective HIV risk communication as a central element (Kaufman et al., 2014). Furthermore, theories from the literature on general risk communication highlight a number of critical elements for effective interventions: establishing trust (trust determination theory), reducing fear (the negative dominance model), and improving understanding (the mental noise model). Trust determination theory is based upon the fact that although establishing trust is essential for communicating risk information, many individuals can be distrustful of authority (particularly when they are in a distressed state) (e.g., Peters, Covello, & McCallum, 1997; Slovic, 1999). Fortunately, extant literature on this theory suggests that the current approach of ASOs to engage in proactive community outreach (via front-line workers) is an effective strategy (Santos, Covello, & McCallum, 1996). However, there are still improvements to be made related to reducing fear and improving understanding.
It is clear that effective strategies and up-to-date evidence-based guidance for communicating HIV risk are critical to protecting individual and community health. The literature offers some direction on two factors which facilitate the HIV risk communication process: overcoming HIV stigma (reducing fear), and the communication of risk information such as statistics (improving understanding). HIV has been widely recognized as a stigmatized condition, with significant stigmatization still occurring in healthcare contexts (Nyblade, Stangl, Weiss, & Ashburn, 2009). Stigmatization acts as a barrier to communicating with patients about their HIV risk, and there is still much to be done in order to remove this barrier. According to the negative dominance model, it is most important to offer solution-oriented messaging that focuses on what is being done and what can be done (Covello, 1998). Applied to HIV stigma as a source of negativity and fear, the negative dominance model suggests that more open discussion about what it actually means to be diagnosed with HIV in the current era, what steps can be taken to prevent transmission, and information about how to maintain health if diagnosed, may be effective.
Empirical research has also been conducted to explore precise and effective means for communicating risk information in the form of statistics. For instance, effective methods for delivering probability information (i.e., the likelihood of getting an HIV infection) have been identified through various studies (for a brief summary see Skakoon-Sparling, Murray, & Gogolishvili, 2017). Probability information about HIV risk (i.e., the likelihood a certain behaviour will lead to HIV exposure) in isolation is not a fully effective way to communicate risk for HIV transmission (Mevissen, Meertens, Ruiter, & Schaalma, 2012; Rothman & Kiviniemi, 1999). Providing context by describing how this information fits into individuals' every-day experiences allows them to better absorb the information and is more likely to influence behaviour change. The use of risk scenarios in HIV communication may help contextualize statistical information and has been found to successfully communicate risk information (Mevissen et al., 2012). Furthermore, the concept of using scenarios in this way fits well with the tenents of the mental noise model--which holds that individuals will have more difficulty processing threatening information, unless they can form a mental image of how the health risk functions (Baron, Hershey, & Kunreuther, 2000; Fischhoff, 1989). This suggest that HIV risk information will be processed more readily once an individual can form a mental image of how transmission occurs (Fischhoff, 2013)-which is a core element in the use of risk scenarios. These scenarios are narratives in which the main character experiences a risky situation (e.g., a situation where HIV transmission is likely), and the possible outcomes of that situation can then be described and discussed. Risk scenarios have been shown to be effective in communicating information about HIV risk to the public (Mevissen et al., 2012) and presenting multiple relevant risk scenarios or inviting audience members to assess their own risk scenarios can be even more effective (Mevissen et al., 2012). Further, combining frequency information (e.g., how likely HIV transmission is to occur as a result of a specific sex act) with a risk scenario seems to be the most effective approach for conveying risk and the consequences of risk-taking (Mevissen, Meertens, Ruiter, Feenstra, & Schaalma, 2009). Due to its absence from the Canadian AIDS Society guidelines, (the national guidelines for promoting HIV education and awareness), it is not known whether this empirical evidence related to conveying risk and delivering probability information is part of the training front-line workers receive.
The lack of formal guidelines for effective methods for HIV risk communication indicates that there may be a disparity between advancements in knowledge about effective methods for communicating HIV risk information and applying these methods in practice. It is acknowledged that health care workers require training about statistics and how to understand and use them in order to build confidence in executing evidence-based practice (Baghi & Kornides, 2013). Despite this, front-line workers do not seem to explicitly receive such training. This disparity is likely to result in barriers to effective risk communication and unnecessary challenges for front-line workers.
In order to address this health need, a two-pronged mixed method exploratory study was conducted. The aim of the overall study was to explore the experiences of front-line workers in their efforts to communicate about HIV risk with the public. Study 1 consisted of focus groups with front-line workers to discuss the challenges and barriers they face in their work communicating about HIV risk, and how they use numbers and statistics. A key aim of Study 1 was to investigate the current strategies for HIV communication and to identify the barriers and other challenges that front-line workers experience. Focus groups were chosen for Study 1 because the voices of front line workers are often unheard by knowledge producers, policy makers, and other decision makers, and focus groups have proven themselves useful in this regard in the past (Sofaer, 1999). We hoped to assess the knowledge translation gaps created through insufficient knowledge translation work on the part of knowledge producers, as well as the needs of front-line workers, in order to learn how to better support their work. Study 2 was a survey designed to confirm and expand on the themes that emerged in Study 1, using a broader sample of front-line workers in Ontario. In combination, these findings will allow for recommendations to be made regarding ways to improve HIV risk communication delivered by front-line workers to more effectively influence the risk behaviours of people living with, or at risk of, HIV.
Front-line workers were recruited from 12 ASOs across Ontario. Workers were enrolled according the following inclusion criteria: 1) they engaged in regular HIV communication work with the general public, 2) they were not a registered health care professional, and 3) their current work was conducted primarily in the province of Ontario. Based on these criteria, 20 front-line workers were eligible and participated in the study.
Participants (N = 20) ranged in age between 22 and 57 years of age (M = 33), 74% identified as female, 21% identified as a gay, bisexual or a man who has sex with men, 21% identified as from an African, Caribbean or Black community, and 10% identified as from a First Nations, Metis, or Inuit community. (2) The front-line workers practiced in regions across Ontario, including Central West (16%), Central East (37%), South West (10%), Northern (21%), and greater Toronto area (16%). Education levels ranged from some college/university to completed masters degree (mode = completed bachelor's degree).
All materials and procedures were reviewed and approved by the research ethics board at the University of Guelph. Front-line workers were invited via direct email (where their emails were listed publicly on the ASO website) or indirectly via emails sent to ASO coordinators who then shared the recruitment email with their front-line workers. The emails invited front-line workers to participate in focus groups where they would discuss their experiences communicating about HIV with the public. Seven focus groups were conducted, with 2 to 5 participants in each arranged according to their availability. The focus groups were conducted in-person when possible, and using teleconferencing for groups of participants living in regions further removed from the research site. Each focus group lasted between an hour to an hour and a half and were conducted using a semi-structured interview guide. During the focus groups, participants were invited to discuss and share their thoughts in response to questions related to their work. Our primary questions were: "what are some of the barriers that make it harder to talk to people about HIV?", "what do you do to overcome these barriers?", "how do you know if the person (or people) you're talking to understands what you're telling them about HIV risk?", "how can you help clarify the message for someone who doesn't seem to be getting it?", and "when it comes to talking about HIV risk, do you prefer using numbers (e.g., statistics) or words (e.g., 'high risk' versus 'low risk')?" Focus group participants were also sent a link to an online survey where they could provide demographic information anonymously.
The audio recording from the focus groups was transcribed verbatim, omitting identifying information. The transcriptions were read by the review team, who noted any patterns in the data and categorized recurrent themes to identify central themes. The identified central themes were used to guide additional coding reviews to systematically frame themes and sub-themes following Braun and Clarke's (2006) thematic analysis guidelines. Individual quotes were sorted using NVivo software.
Data from the focus groups were organized into two overarching central themes. The first theme, Barriers to Communication, relates to factors that interfere with initiating conversations about HIV. The second theme, Knowledge Translation Challenges, relates to factors that make it difficult for front-line workers to either deliver specific kinds of information or that make it difficult to determine their success in communicating about HIV. Themes will be discussed in the sections below as they correspond to the two central categories and their sub-themes. The sub-themes for the Barriers to Communication central category are: HIV stigma, building trust and rapport, normalizing sexual health topics, and managing competing needs. The sub-themes for the Knowledge Translation Challenges central category are: communicating statistics and determining understanding.
Barriers to Communication
One of the strongest sub-themes in this category was the role of HIV stigma. Many participants spoke about individuals' discomfort around the topic of HIV and how this presented a barrier to starting conversations. Participants said that many people wish to avoid being associated with HIV (including by avoiding being seen speaking with front-line workers). One worker stated, "People tend to be scared off by, you know, the prominence of AIDS in one agency's name ... They don't even want to make eye contact with us, let alone stop and talk."
HIV stigma also played a role through individuals' misperceptions of their own risk. Front-line workers discussed how this presents a unique challenge, because people who are at risk through their behaviours may perceive themselves to be immune to HIV risk, since they attribute HIV to well identified risk groups. As a result, they may not be receptive to any information a front-line worker tries to provide. One participant illustrated this concept by stating "... they don't think they're at risk at all ... because they're married and they're Christian. Or, you know, they may be promiscuous, but heterosexual. So they don't really think it could happen to them." Another worker added, "A lot of people who are the most at risk are the hardest to reach ... you have to target 'at-risk populations,' which is fundamentally problematic because [some] people who are at risk don't identify as being 'at risk.'" This is very challenging for front-line workers since, as one participant aptly put it, "Internalized stigma is a definite barrier ... no matter how many facts you bring to the table, if that person isn't open to that conversation, they're not open to that conversation."
Front-line workers also discussed the strategies they use to attempt to overcome the discomfort and stigma around HIV, in the hopes that their audience would become more open to learning about HIV risk. Two very common sub-themes for overcoming HIV stigma as a barrier were building trust and rapport and normalizing sexual health and HIV topics.
Building trust and rapport was such a prominent sub-theme in the focus groups that we noted the phrase "meeting people where they're at" was mentioned (in almost this exact phrasing) 35 times in total. Front-line workers discussed specific strategies related to this theme such as starting the conversation about another, less sensitive topic (like the weather or the venue, anything salient) and eventually building to the topic of HIV risk. Workers felt this strategy was effective because it gave the people they talk to time to establish trust in the worker and to feel more comfortable with the topic. Workers also discussed that another way to build trust and rapport was to be visible in the community and in their organization, so that people would recognize them. One worker stated, "Being present and being a face that people recognize has made a world of difference in terms of trying to do education, building relationships, having people feel comfortable enough around me to ask questions."
Many front-line workers also discussed the importance of normalizing sexual health topics, HIV, or both by speaking about these topics in a very open and frank fashion. They recognized that this strategy was important for helping people feel more comfortable with the topic. A sub-theme of the normalizing sexual health and HIV sub-theme was the importance of creating a non-judgmental space, where one could ideally feel comfortable discussing HIV related topics with the worker, as illustrated by the following quote: "It's about being approachable, non-judgmental and ... unflappable. You have to be able to not clutch your pearls when somebody says something."
Some of the front-line workers also used a highly personal approach to normalize sexual health and HIV topics, such as discussing their own HIV-positive diagnosis. Several of the front-line workers mentioned that they found this strategy effective for combating stigma, easing fears about HIV, and opening the conversation to more frank discussions around HIV risk. One worker stated, "I normalize the positive testing experience and ... when we have a conversation, I tell them I've been positive for 21 years. It sort of takes away a lot of the anxiety."
Another important barrier to HIV communication that was discussed in the focus groups is closely tied to the notion of intersectionality and the competing needs that some people experience. These competing health and safety related needs can make it more challenging to communicate about HIV risk because this information might not be considered high priority by the individual, or by the front-line worker, depending on the context. One participant provided an example of this:
They're potentially trying to figure out where they're going to stay that night, getting a bit of money to have food or possibly drugs ... In terms of ... the hierarchy of needs, our clients have very complex needs and many challenges with the social determinants of health.
Another worker added:
It comes down to just being real with people, just being a human being with another human being and talking with that person about what they want to talk about. Sometimes it leads to that [HIV risk] and those conversations and sometimes it doesn't.
In summary, front-line workers described facing a number of barriers in their risk communication work. These barriers included HIV-related stigma and competing needs for their clients living with or at risk for HIV. These barriers present unique challenges as HIV-related stigma makes it challenging to reach individuals who are at-risk and to convince them to attend to information about HIV. In contrast, an individual who may turn to front-line workers for support may also have many different needs. These varied needs can make it difficult to determine how to best deliver HIV information or whether to prioritize delivering HIV information over ensuring a client has food to eat and a safe place to sleep. However, front-line workers do have some strategies that they employ to manage these challenges. These include building trust and rapport though using non-judgmental language and normalizing sexual health topics by speaking very frankly and openly about HIV and sexual health.
Knowledge Translation Challenges
One of the major themes in this category was related to the use of statistics. In fact, our participants were divided on this matter. Many of our participants preferred not to use numerical information in conversations about risk, mainly because they felt that the numbers did not necessarily improve understanding. One worker stated, "I try to avoid numbers ... it's funny because numbers should be a lot more concrete, but people understand numbers differently." Another participant's statement illustrates perhaps one reason why some front-line workers may be reluctant to incorporate risk statistics into their conversations--because they do not feel comfortable with this type of information themselves, "... the numbers, I don't know what they mean and ... I don't think [other] people actually know what they mean either."
Some of these workers stated that if they did encounter someone who wanted to know more about the statistics related to HIV risk, they would refer them to a website or another expert (such as a public health nurse). Other workers discussed that they do incorporate statistical information related to HIV risk in their conversations when the individual has asked specific questions related to this kind of information: "... they'll be like 'I was reading this stuff about the PARTNER study and undetectable viral loads' and it's like, okay fine, we can talk a little bit about statistics and what those mean."
Overall, the majority of the focus group participants reported varying degrees of reluctance about incorporating statistical information into their conversations about HIV risk However, there was a small minority who felt that the statistical information could be informative for the people they talk to about HIV, primarily because it adds a sense of concreteness that can help crystalize the information in a useable way. One worker illustrated this point by stating:
I think numbers quantify something for them in their mind where they can now actually understand the level of risk. If I say its something high-risk, low-risk--they don't really understand what that means ... So, I try to use a lot more stats these days.
We also asked the front-line workers in our focus groups how they judge if someone understands their message about HIV risk. The most common sub-theme among respondents was related to how difficult it is to determine if someone understands. Some front-line workers cited this as a challenge because they have no way of knowing if the individual will actually put the information they've been given into action. Others focused on how difficult it is to gauge understanding because an individual may choose not to ask further questions or may say they understand in an effort to simply end the conversation. One worker voiced their frustration over the uncertainty around gauging understanding by stating "You don't know if they're understanding. Sometimes they will say, like, 'yes I understand' and 'okay, yeah, I get it'; but it's like 'but do you!?'"
Many of the front-line workers did discuss a variety of strategies that they do use to try to gain a sense of someone's understanding. Several participants discussed using 'check-ins': frequently stopping to invite questions and check understanding (e.g., asking "does this make sense to you?') and, relatedly, some described requesting that the person they are talking to demonstrate their understanding by summarizing the message in their own words. However, such strategies are not always practical due to situational and/or time constraints (e.g., outreach in night clubs or bathhouses), and some frontline workers described trying to use more subtle cues to gauge understanding, cues related to facial expressions or gestures that suggested engagement, for example:
I ... pick up on visual cues, so if they're nodding of if they're, you know, saying 'hey, okay' or, you know, if their bodily gestures show that they're open and they're understanding ... I usually pick up on that. If I see any face of confusion, that's where I will stop ... and be like 'did you understand what I'm talking about' ... and 'can I help you clarify something?'
The qualitative data gathered during these focus groups provided valuable insight into the challenges front-line workers can experience, as well as the strengths and strategies they bring to the work that they do in order to overcome some of these barriers and challenges. Four key sub-themes were drawn from the focus groups with front-line workers: stigma as a barrier to communication about HIV, the importance of the use of non-judgmental and sexual language, uncertainty in the use of statistics in HIV communication and the challenge of identifying client understanding. In order to support or confirm the themes that emerged from the focus groups and to delve a little more deeply into some of these themes, we designed Study 2 as an online survey, allowing us to reach a larger sample of frontline workers in Ontario.
A total of 52 front-line workers completed a survey online. The mode age range of participants was 26-34 years old, with 53.8% of participants identifying as female, 34.6% identifying as male, and 11.5% identifying as non-binary. Participants identified as working in various regions of Ontario: 25.0% in the greater Toronto area, 11.5% in Ottawa and eastern Ontario, 7.7% in central eastern Ontario, 32.7% in central western Ontario, 7.7% in northern Ontario, and 15.4% in the southwest of Ontario. 84.6% of participants indicated over 2 years of experience in the field, with the remaining participants having between 0 and 2 years' experience.
The survey questions were designed to address the themes that emerged during the focus groups. For example: overcoming barriers to communication (e.g., "In your experience, to what extent do the following things make it easier to talk about HIV in your work?") and assessing knowledge translation success (e.g., "How do you know the people you're talking to about HIV understand what you've told them?"). The survey also included items designed to delve more deeply into some of the issues that were raised during the focus groups (e.g., "how helpful do you find graphs and numbers that are part of a story or report when reading fact sheets or other materials about HIV?"). Items based on strategies highlighted in the literature on effective communication strategies (e.g., "Rate how frequently you use the following strategies to communicate about HIV on a scale of 0-5: using storytelling, using facts, by conveying simple information about HIV") were also included. To further explore front-line workers' concerns around working with statistical information, we posed one question related to workers' use of statistics in their work with the public, and two related to their own learning and understanding of statistics. We also asked an additional question regarding how front-line workers felt HIV communication could be improved in Ontario and included general demographic items.
All materials and procedures were reviewed and approved by the research ethics board at [redacted for blind review]. Participants were recruited through emails sent to their ASO. Participants who clicked the invitation link were directed to a consent form, and those who consented to participate were then presented with the survey questions. After completing the survey, participants were given the opportunity to provide their email address in order to be entered for a chance to win an e-gift card.
The survey data were analyzed primarily by examining distributions of responses using descriptive statistics. We also compared differences in knowledge translation challenges and uncertainty using statistics between front-line workers residing in large cities and smaller/medium sized cities (including rural catchment areas) using a t-test. This comparison was conducted to determine whether these two groups of front-line workers would have differing needs in terms of support, given the differences between their respective settings. "Large cities" included the metropolitan areas of Toronto and Ottawa, all other sites were classified as smaller/medium sized cities (including rural catchment areas).
Overcoming Barriers to Communication
HIV-related stigma as a barrier to communication was confirmed in the survey data. Participants indicated that they are most frequently asked questions about HIV basics, suggesting that they are often working to address stigma around things such as the demographics of affected individuals and transmission methods (see Table 1). Furthermore, when asked about the purpose of their HIV communication work, many participants elected to write in that they felt one of their main purposes was specifically to reduce stigma around an HIV-positive status. Participants also noted that they use compassion and understanding of stigma as a tool to overcome barriers to HIV communication.
Additionally, the same specific factors identified in the focus groups that seem to make HIV risk communication easier (namely the use of non-judgmental language and the normalization of sexual health related language) were validated as frequently used tactics in the survey results (see Table 2).
Knowledge Translation Challenges
As discussed above, the use of statistics in HIV risk communication was mixed among the focus group participants; some front-line workers noted that people are not always able to understand statistics, and some indicated that they are often uncomfortable interpreting and using statistics themselves.
In their work with the public, the front-line workers who participated in this study do not seem to be making use of a combination of words and numbers to communicate risk, and instead may be using statistics merely to add credibility to the HIV information (see Table 3). Despite this, the survey results also indicated that, on average, participants felt that the people they work with would have difficulty interpreting statistical information (see Table 3).
Participants from large cities (Ottawa and the greater Toronto area) were compared with those from smaller/medium sized cities (including rural catchment areas) of Ontario. An independent samples t-test indicated two significant differences between these groups. Urban (large city) workers (M = 2.53, SD = 0.84) were significantly less likely to refer people with questions about HIV statistics to other sources or experts than workers from non-urban areas (smaller/medium sized cities, including rural catchment areas) (M = 3.24, SD = 1.23); t(48.30) = -2.49, p < .05, d = 0.67. Further, non-urban area workers (M = 3.64, SD = 1.11) were significantly more likely to say they use statistics to add credibility to the HIV information than were urban workers (M = 2.68, SD = 1.16); t(36.50) = -2.90, p < .05, d = 0.95.
As for understanding the statistical information themselves, survey participants indicated that they most frequently prefer to be presented with probability information in the form of '1 in 5 people' (as opposed to '1/5 people', '20% of people', or as a pictogram; see Table 4). The front-line workers also indicated that they find personal stories and scenarios more helpful than pictures and graphics, and these more helpful than graphs and numbers, when interpreting HIV risk information themselves (see Table 5).
The second theme related to knowledge translation challenges from the focus group data was related to the fact that it is often difficult for front-line workers to know or find out whether a client actually understands their message about HIV. The survey findings reaffirmed this. Participants were asked whether they are able to know/find out if someone really understands their message about HIV using a 5-point Likert-type scale (0 = never, 5 = every time). The mean of the responses to this question was 2.08. Front-line workers seemed to feel confident that people have understood their message, on average, less than half the time. Further, when participants were asked about their methods for assessing client understanding of risk information, they most frequently indicated that they simply ask clients if they understand the information (see Table 6).
Beyond these key themes, we also asked front-line workers where they obtain the largest proportion of their information about HIV risk. The vast majority (81%) reported using resources from HIV knowledge translation organizations (e.g., CATIE, Ontario Public Health, the Ontario HIV Treatment Network), and a large number reported obtaining resources from workshops trainings and webinars (65%) or population targeted provincial HIV organizations (47%; e.g., the Gay Men's Sexual Health Alliance, African and Caribbean Council on HIV/AIDS in Ontario, etc.). Finally, we asked participants how they felt HIV communication could be improved in Ontario. This revealed a theme related to challenges in knowledge translation: the need for additional resources to strengthen the connection between knowledge producers and users. Approximately 56% of participants indicated that they would like to be provided with more resources to guide their work, while an additional 56% felt their work could be improved through better retention of workers.
The HIV risk communication work that takes place on the "front-lines" is one of the major tools used to combat the spread of HIV. However, there are significant barriers to this type of risk communication and there is a need for clear guidelines and strategies for knowledge translation. The current work aimed to provide a broader understanding of the barriers to HIV risk communication and the challenges in knowledge translation, in order to determine how best to combat them. Study 1 involved conducting focus groups with front-line workers and unifying themes were identified from the transcripts. Study 2 used an online survey to confirm these themes and to delve more deeply into some. These themes and sub-themes identified HIV stigma as a major barrier to risk communication. The use of non-judgmental language and normalizing sexual health related language were identified as two effective methods to combat this and many other barriers. Further, two sub-themes related to issues in knowledge translation were identified: discomfort with statistics, and difficulty determining client comprehension.
HIV stigma is a prominent barrier in HIV risk communication as it can prevent those at risk for HIV transmission from identifying themselves as at-risk, and from accessing appropriate healthcare resources. For example, the perception of shame associated with identifying as HIV-positive, internalized stigma, and stereotyping were all identified as key issues preventing individuals from accessing ASO resources. These themes illustrate the fact that stigma is indeed a complex and multi-faceted phenomenon, a concept that is supported by the findings of other work (e.g., Loutfy et al., 2012) showing that gender and ethnicity affect stigma. The experience of stigma is unique for each individual's specific identity (Loutfy et al., 2012). This finding highlights the strengths that could be gained by applying an intersectional approach to HIV risk communication, and recognizing that an individual's risk for HIV transmission varies depending on an individual's intersecting identities of marginalization (Hankivsky & Christoffersen, 2008). Each individual experiences stigma, risk of transmission, support methods, and other factors in different and unique ways. This approach can support front-line workers in conceptualizing and communicating the complexity of the risk information they aim to provide to clients and community members3 related to HIV (Hankivsky et al., 2014). For example, if a front-line worker approaches their interaction with each client by considering the everyday lives of that client and their associated HIV risk, including the structural barriers that each one may face, and how their experiences of multiple and intersecting identities (such as age, gender, race, ethnicity, class, environment, etc.) may shape their lives, then they may be able to provide more meaningful and relevant information and strategies for HIV risk communication. An intersectional approach is not currently championed in the guidelines set out by the Canadian AIDS Society and is one of various advancements in this field that has not been formally translated into practice. Both the Loutfy et al. (2012) research and the principles of intersectionality (as outlined by Hankivsky & Christoffersen, 2008) contend that the co-occurring facets of an individuals identity (such as gender, ethnicity, age, vocation, etc.) result in a specific and varied experience of HIV risk and stigma. Taken together, since stigma may affect each aspect of an individuals identity differently, a more complex plan to combat stigma, one which takes into account both the individual and structural forces that impact HIV risk, could be significantly more successful than a one-dimensional approach in addressing stigma. Thus, it is no longer sufficient to approach HIV risk communication by only taking into account the impact of one social category and identity, such as race, gender, or sexual orientation. This approach would address some of the frustrations front-line workers expressed in the focus groups. For example, it was raised in the focus groups that assigning all work related to African, Caribbean, and Black (ACB) communities to a single ACB worker can result in a much heavier workload as this work may encompass work with ACB youths, ACB men who have sex with men (MSM), and ACB women. In contrast, this would not typically occur for work related to non-ACB communities, where the labour would be spread across the youth worker, the MSM worker, and the women's worker. Greater coordination between the different population-specific agencies in Canada may be needed to better target the diverse populations most impacted by HIV, and additional work could be done to help front-line workers use a more intersectional and tailored approach for HIV risk communication.
A key line of inquiry throughout both studies outlined in this paper was to find what makes risk communication easier (or harder) for front-line workers. There was general agreement between the focus group participants and the survey participants that the key strategies for effective risk communication are using non-judgmental and normalizing sexual-health related language. This finding is congruent with the negative dominance model (i.e., focussing on reducing fear to improve message uptake; Covello, 1998), as well as with the research on men's condom use by Fisher (1984), showing that acceptance and comfort with sexuality is associated with greater condom use. Robinson, Bockting, Simon Rosser, Miner, and Coleman (2002) expanded on this idea and suggested that sound communication around sexual health results in greater knowledge about safe sex, acceptance, and comfort. This, in turn, results in greater condom use and HIV preventative behaviour. Thus, we can see from the current work that front-line workers do seem to be prioritizing methods of communication that are known to encourage HIV preventative behaviours, and this is a major strength in their HIV risk communication strategies.
The use of statistics by front-line workers in their own knowledge updates and their use of statistics to communicate risk, were both investigated as key areas where knowledge translation could be strengthened. The former was investigated in an exploratory nature in Study 2; seeking to determine how statistics could be presented to optimize use by front-line workers. Our results demonstrate that knowledge producers need to be mindful of the methods they choose for presenting statistical information, since respondents showed a clear preference: pictures and graphics were preferred over graphs or numbers (note also that the personal stories and scenarios were the most preferred method of consuming risk information). By considering front-line workers' preferred method for statistical HIV risk information, knowledge providers may optimize their learning, retention, and implementation of this information. It is vital to attend to these preferences; as front-line workers indicated, they perceived that an important part of improving HIV risk communication in Ontario would be through providing more and better-suited resources to guide risk communication, remove barriers, and fill gaps in knowledge translation. Combined with the critical information about how front-line workers prefer and feel best able to learn, these new resources can be tailored as a way to optimize their utility.
It is clear that communicating effectively about HIV risk is a vital skill for front-line workers. However, the Canadian AIDS Society provides Canada's only formal national guidelines for this type of communication (Gilbert, Dulai, Wexel, & Ferlatte, 2015). Though these guidelines are an important resource for front-line workers and registered health professionals in Canada, they are brief and have not been regularly updated to reflect recent advancements in our understanding of HIV risk, strategies for risk reduction, and methodologies for communicating about HIV risk (Gilbert et al., 2015). Outdated guidelines present a clear weakness in the chain of knowledge translation. Because front-line workers may be relying on inaccurate information and less effective strategies for health communication, this may put their clients at risk.
The current work sought to investigate how front-line workers are communicating about HIV with their clients, in comparison to evidence-based methods for communicating probability and/or frequency information about HIV infection. The literature indicates that contextualized statistical information (i.e., providing statistical risk information paired with risk scenarios) is more effectively communicated (Mevissen et al., 2012; Rothman & Kiviniemi, 1999). Despite this, the results of Study 2 suggest that front-line workers do not seem to be using a combination of words and numbers or risk scenarios to convey HIV risk. Further, although front-line workers indicated that they feel as though their clients may not understand statistics, they also indicated that they use them to add credibility to the HIV information they discuss. This suggests that frontline workers may not be aware of the most effective methods for conveying risk information, and indicates that statistical information is not being conveyed or used in the most effective way possible. Non-urban based front-line workers also seemed to be more likely to refer clients with questions about statistics elsewhere as compared to workers in urban areas, which suggests that ASOs and other provincial or federal organizations may need to do more work to consult with their non-urban workers, in order to determine their needs around the use of statistics in their work. There is much to be done with regard to knowledge translation in order to support front-line workers in all regions with effective methods of communicating statistics in HIV risk.
Ensuring effective communication about HIV risk is a primary goal of front-line workers; the current study aimed to elucidate how front-line workers evaluate successful chains of knowledge translation. Front-line workers in the focus groups and those who completed the survey all seemed to agree that it is hard to know whether a client understands a message about HIV risk. Survey results revealed that front-line workers most commonly attempted to evaluate understanding by asking the person they are talking to if they understand after delivering a message, but it is not known whether this is an effective way of evaluating understanding. In fact, it seems that although communication about HIV risk during interventions may make clients feel as though they are being attended too, it may not actually improve their health literacy or educate them about their health risks (Skakoon-Sparling & Globerman, 2016). Indeed, many front-line workers seemed unsatisfied with the method of simply asking their clients if they understand. When asked how confident they were that the individual understood their message, responses indicated that they were confident less than half of the time. This sentiment was also highlighted in the focus group responses, where front-line workers noted an individual may say they understand, but it is difficult to tell if they really did comprehend/internalize the information in a meaningful way. Further research is needed to determine effective methods for evaluating understanding because this presented a significant challenge to participants in the current study.
Methods for successful risk communication are being empirically studied, and yet front-line workers do not seem to have access to or training based on this up-to-date research. This constitutes a weakness in knowledge translation on the part of knowledge producers, whose role it is to facilitate the knowledge translation process. In addition to more research in this area, it is imperative that front-line workers have access to training and evidence-based knowledge that has the potential to impact their work and the challenges they experience. These resources need to include material on effectively communicating HIV risk statistics and methods for assessing client understanding. Resources for HIV front-line workers will be more effective if they include tools and techniques for creating a non-judgmental space and normalizing sexual health related language. Improving HIV risk communication is crucial for preventing HIV transmission and closing the knowledge translation gap that is occurring among front-line workers in Ontario.
Both studies in the current work explored how and whether the methods from the literature on HIV risk communication is being applied by front-line workers in Ontario. The current work outlines the challenges for risk communication and the preferred methods for front-line workers. Consideration of these results, as well as integrating an intersectionality approach to the training and implementation of HIV communication work in Ontario, could inform the production of effective knowledge products to strengthen an important line of defense in the reduction of HIV: risk communication. Two critical areas for improvement are (1) to implement more evidence-based training in HIV communication and (2) to provide more resources that are tailored to the needs of frontline workers.
Baghi, H., & Kornides, M. L. (2013). Current and future health care professionals attitudes toward and knowledge of statistics: How confidence influences learning. Journal of Nursing Education and Practice, 3(7), 24-29. https://doi.org/10.5430/jnep.v3n7p24. Medline:25419256
Baron, J., Hershey, J. C., & Kunreuther, H. (2000). Determinants of priority for risk reduction: The role of worry. Risk Analysis, 20(4), 413-428. https://doi.org/10.1111/0272-4332.204041. Medline: 11051067
Bourgeois, A. C., Edmunds, M., Awan, A., Jonah, L., Varsaneux, O., & Siu, W. (2017). HIV in Canada: Surveillance report, 2016. Canada Communicable Disease Report, 43(12), 248-256. https:// doi.org/10.14745/ccdr.v43il2a01. Medline:29770056
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101. https://doi. org/10.1191/1478088706qp063oa
Centers for Disease Control and Prevention. (2018). Estimated HIV incidence and prevalence in the United States, 2010-2015. Retrieved from the Centers for Diseases Control and Prevention website http://www.cdc.gov/hiv/library/reports/hiv-surveillance.html
Covello, V. T. (1998). Risk perception, risk communication, and EMF exposure: Tools and techniques for communicating risk information. In Risk perception, risk communication, and its application to EMF exposure: Proceedings of the World Health Organization/ICNRP International Conference (ICNIRP 5/98). Vienna, Austria: International Commission on Non-Ionizing Radiation Protection (Vol. 179).
European Centre for Disease Prevention and Control. (2017). HIV/ AIDS surveillance in Europe 2017-2016 data. Retrieved from the European Centre for Disease Prevention and Control website https:// ecdc.europa.eu/sites/portal/files/documents/20171127-Annual_HIV_Report_Cover%2BInner.pdf
Fischhoff, B. (1989). Helping the public make health risk decisions. In Effective risk communication (pp. 111-116). Boston, MA: Springer.
Fischhoff, B. (2013). Risk perception and communication. In Risk analysis and human behavior (pp. 17-46). New York, NY: Routledge.
Fisher, W. A. (1984). Predicting contraceptive behavior among university men: The role of emotions and behavioral intentions. Journal of Applied Social Psychology, 14(2), 104-123. https://doi. org/10.1111/j,1559-1816.1984.tb02224.x
Gilbert, M., Dulai, J., Wexel, D., & Ferlatte, O. (2015). Report from a meeting of researchers, policy-makers, service providers and community members funded by the Canadian Institutes of Health Research. Health literacy, sexual health, and gay men: Current perspectives. Vancouver, BC: Ontario HIV Treatment Network.
Hankivsky, O., & Christoffersen, A. (2008). Intersectionality and the determinants of health: A Canadian perspective. Critical Public Health, 18(3), 271-283. https://doi.org/10.1080/09581590802294296
Hankivsky, O., Grace, D., Hunting, G., Giesbrecht, M., Fridkin, A., Rudrum, S., ... & Clark, N. (2014). An intersectionality-based policy analysis framework: Critical reflections on a methodology for advancing equity. International Journal for Equity in Health, 13(1), 119. https://doi.org/10.1186/s12939-014-0119-x. Medline:25492385
Kaufman, M. R., Rimal, R. N., Carrasco, M., Fajobi, O., Soko, A., Limaye, R., & Mkandawire, G. (2014). Using social and behaviour change communication to increase HIV testing and condom use: The Malawi BRIDGE Project. AIDS Care, 26(1), 46-49. https://doi. org/10.1080/09540121.2014.906741. Medline:24735337
Loutfy, M. R., Logie, C. H., Zhang, Y., Blitz, S. L., Margolese, S. L., Tharao, W. E., ... & Raboud, J. M. (2012). Gender and ethnicity difference in HIV-related stigma experienced by people living with HIV in Ontario, Canada. PLoS ONE, 7(12), e48168. https://doi. org/10.1371/journal.pone.0048168. Medline:23300514
Mevissen, F. E., Meertens, R. M., Ruiter, R. A., Feenstra, H., & Schaalma, H. P. (2009). HIV/STI risk communication: The effects of scenario-based risk information and frequency-based risk information on perceived susceptibility to chlamydia and HIV. Journal of Health Psychology, 14(1), 78-87. https://doi.org/10.1177/ 1359105308097948. Medline:19129340
Mevissen, F. E., Meertens, R. M., Ruiter, R. A., & Schaalma, H. P. (2012). Bedtime stories: The effects of self-constructed risk scenarios on imaginability and perceived susceptibility to sexually transmitted infections. Psychol Health, 27(9), 1036-1047. https://doi.org/10.108 0/08870446.2011.648935. Medline:22263927
Nyblade, L., Stangl, A., Weiss, E., & Ashburn, K. (2009). Combatting HIV stigma in health care settings: What works? Journal of the International AIDS Society, 12(15). https://doi.org/10.1186/17582652-12-15. Medline: 19660113
Peters, R. G., Covello, V. T., & McCallum, D. B. (1997). The determinants of trust and credibility in environmental risk communication: An empirical study. Risk Analysis, 17(1), 43-54. https://doi. org/10.1111/j.1539-6924.1997.tb00842.x. Medline:9131825
Public Health Agency of Canada. (2012). HIV transmission risk: A summary of the evidence. Retrieved from https://www.catie.ca/sites/ default/files/HIV-TRANSMISSION-RISK-EN.pdf
Public Health Agency of Canada. (2018). Summary: Estimates of HIV incidence, prevalence and Canada's progress on meeting the 90-90-90 HIV targets, 2016. Retrieved from https://www.canada.ca/en/public-health/ services/publications/diseases-conditions/summary-estimates-hiv-incidence-prevalence-canadas-progress-90-90-90.html
Robinson, B. E., Bockting, W. O., Simon Rosser, B. R., Miner, M., & Coleman, E. (2002). The Sexual Health Model: Application of a sexological approach to HIV prevention. Health Education Research, 17(1), 43-57. https://doi.org/10.1093/her/17.L43. Medline: 11890176
Rothman, A. J., & Kiviniemi, M. T. (1999). Treating people with information: An analysis and review of approaches to communicating health risk information. Journal of the National Cancer Institute Monographs, 25, 44-51. https://doi.org/10.1093/oxfordjournals. jncimonographs.a024207. Medline: 10854457
Santos, S. L., Covello, V. T., & McCallum, D. B. (1996). Industry response to SARA Title III: Pollution prevention, risk reduction, and risk communication. Risk Analysis, 16(1), 57-66. https://doi. org/10.1111/j.1539-6924.1996.tb01436.x. Medline:8868223
Skakoon-Sparling, S., & Globerman, J. (2016). Improving healthcare providers face-to-face interactions with clients living with or at-risk for HIV. Retrieved from the Ontario HIV Treatment Network website http://www.ohtn.on.ca/rapid-response-improving-healthcare-providers-face-to-face-interactions-with -clients-living-withor-at-risk-for-hiv/
Skakoon-Sparling, S., Murray, K., & Gogolishvili, D. (2017). Strategies for effectively communicating the risk of HIV transmission. Retrieved from the Ontario HIV Treatment Network website http://www. ohtn.on.ca/rapid-response-strategies-for-effectively-communicating-the-risk-of-hiv-transmission/
Slovic, P. (1999). Trust, emotion, sex, politics, and science: Surveying the risk-assessment battlefield. Risk analysis, 19(4), 689-701. https:// doi.org/10.1111/j.1539-6924.1999.tb00439.x. Medline: 10765431
Sofaer, S. (1999). Qualitative methods: What are they and why use them? Health Services Research, 34(5 Pt 2), 1101-1108. Medline: 10591275
View from the Front Lines. (2016). Annual summary & analysis of data provided by community-based HIV/AIDS services in Ontario. Toronto, ON: AIDS and Hepatitis C Programs, Ontario Ministry of Health and Long-Term Care and the Public Health Agency of Canada, Ontario Region.
Shayna Skakoon-Sparling [1,2], Elissa Fiona Morgan , Madison Giles [2,4], Abigail E. Kroch [2,5], Robin R. Milhausen , and Jean Bacon 
 Department of Family Relations and Applied Nutrition, University of Guelph, Guelph, ON
 The Ontario HIV Treatment Network, Toronto, ON
 Department of Biology, University of Toronto, Toronto, ON
 Division of Social and Behavioural Health Sciences, University of Toronto, Toronto, ON
 Division of Clinical Public Health, Dalla Lana School of Public Health, University of Toronto, Toronto, ON
Correspondence concerning this article should be addressed to Shayna Skakoon-Sparling, Department of Family Relations and Applied Nutrition, University of Guelph, Guelph, ON NIG 2W1, Canada. E-mail: firstname.lastname@example.org
(1) Registered health professionals also communicate about HIV risk, and many of the results presented in this study may apply to these individuals; however, they were not the focus of study for the current paper.
(2) These categories represent the priority populations of interest in Ontario HIV work and were not mutually exclusive.
(3) 'Community members' is used in this context to refer to any member of society within reach of the messages released via ASOs and their programs.
Table 1. Study 2 Responses to the Item "I Am Asked Questions about ..." (a) Sum of Ranking Mode Scores Ranking Score HIV basics (e.g., transmission 169 1 methods) Living with HIV (e.g., viral load) 207 2 HIV testing (e.g., where to test, 221 1 the testing process) Options for risk reduction practices 229 6 (e.g., using condoms, PrEP) HIV transmission risk after exposure 231 2 HIV status disclosure and 256 7 criminalization Engaging in serodiscordant sex (one 318 5 partner is HIV positive while the other is not) Options for HIV harm reduction 336 8 practices (e.g., needle use) Harm reduction equipment (e.g., how 343 9 to use different items such as cookers) Other 495 10 (a) Listed answers were ranked by frequency (with 1 being most frequent and 10 being least frequent). Items are listed from those ranked most often as frequently used (lowest score) to those ranked as least frequently used (highest score). Table 2. Study 2 Responses to the Item "How Often Do You Use Any of the Following Strategies to Overcome Barriers to Talking to People about HIV in Your Work?" (a) Mean Mode # indicated N/A to work (b) Being very frank about the 4.135 4 0 risks someone faces Building trust and rapport by 4.353 5 1 taking things slow Being visible in the 4.16 5 2 community and available consistently so people feel they can trust you Making space for one-on-one 3.936 4 5 interaction after talking to a group about HIV Fighting discomfort about HIV 4.231 5 0 by normalizing sexual health topics Using non-judgmental 4.808 5 0 language Showing I am comfortable 4.712 5 0 with sexual health related language (a) Rated on a Likert scale from 0-5 where 0 is never used and 5 is all the time. (b) Number of participants out of a total sample size of n = 52. Table 3. Study 2 Responses to the Item "When It Comes to Talking about HIV, Some People Prefer Using Numbers While Other People Prefer Using Words. How Strongly Do You Agree with the Following Statements as They Apply to Your Work?" (a) Mean Mode # indicated N/A (b) I don't use statistics because 3.157 3 1 I feel people have difficulty interpreting them I try to provide specific 2.216 2 1 statistics a person shows interest in I refer people with questions 2.860 2 2 about statistics to other sources or experts I use a combination of words 2.020 2 1 and numbers I use statistics to appear more 3.180 3 2 credible to the person I'm talking too (a) Rated on a Lekert scale from 0-5 where 0 is strongly disagree and 5 strongly agree. (b) Number of participants out of a total sample size of n = 52. Table 4. Study 2 Response Frequencies to the Item "Which Method of Presenting the Following Statistic Conveys the Information Best for You?" Percent (n) 1/5 of people with HIV are undiagnosed 3.8% (2) 20% of people with HIV are undiagnosed 19.2% (10) 1 in 5 people with HIV are undiagnosed 55.8% (29) The grey (a) figures represent the # of 21.2% (11) people out of 10, with HIV who are undiagnosed. (a) The grey figures were represented in green in the original study. They have been changed to grey for this publication. Table 5. Study 2 Response Summary to Survey Questions 9-11 Mean Mode How helpful do you find graphs and numbers 3.500 4 when interpreting HIV risk information? (a) How helpful do you find personal stories or 4.385 5 scenarios when interpreting HIV risk information? (a) How helpful do you find pictures and graphics 4.096 5 when interpreting HIV risk information? (a) (a) Rated on a Likert scale from 0-6 where 0 is not at all and 6 is extremely. Table 6. Study 2 Responses to the Item "How Do You Know the People You're Talking to about HIV Understand What You've Told Them? (Rank How Important These Tactics Are in Your Work)" (a) Sum of Ranking Mode Ranking Scores Score I ask them if they understand the 115 1 information I can tell whether someone understands 142 2 what I've said based on the follow-up questions they ask I use subtle cues to judge whether 153 3 someone understands (e.g., facial expressions) I ask them to summarize the information 184 3 in their own words I can test knowledge with a survey 192 5 before and/or after workshops Other 306 6 (a) Listed answers were ranked by frequency (with 1 being most frequent and 10 being least frequent). Tactics are listed from those ranked most often as frequently used (lowest score) to those ranked as least frequently used (highest score).
|Printer friendly Cite/link Email Feedback|
|Author:||Skakoon-Sparling, Shayna; Morgan, Elissa Fiona; Giles, Madison; Kroch, Abigail E.; Milhausen, Robin|
|Publication:||The Canadian Journal of Human Sexuality|
|Date:||Dec 1, 2019|
|Previous Article:||LGBTQ2+ aging in Canada: Building the evidence and informing action.|
|Next Article:||Transgender clients at a youth mental health care clinic: Transcending barriers to access.|