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Research Article

Facing Our Fears”: Using facilitated film viewings to engage communities in HIV research involving MSM in Kenya

ORCID Icon, , , , & | (Reviewing Editor) show all
Article: 1330728 | Received 17 Feb 2017, Accepted 11 May 2017, Published online: 27 May 2017

Abstract

Kenya is a generally homophobic country where homosexuality is criminalised and people who engage in same sex sexuality face stigma and discrimination. In 2013, we developed a 16 min documentary entitled “Facing Our Fears” that aimed at sharing information on how and why men who have sex with men (MSM) are involved in on-going KEMRI HIV prevention research, and associated community engagement. To consider the film’s usefulness as a communication tool, and its perceived security risks in case the film was publicly released, we conducted nine facilitated viewings with 122 individuals representing seven different stakeholder groups. The documentary was seen as a strong visual communication tool with potential to reduce stigma related to homosexuality, and facilitated film viewings were identified as platforms with potential to support open dialogue about HIV research involving MSM. Despite the potential, there were concerns over possible risks to LGBT communities and those working with them following public release. We opted—giving emphasis to the “do no harm” principle—to use the film only in facilitated settings where audience knowledge and attitudes can be carefully considered and discussed. The results highlight the importance of carefully assessing the range of possible impacts when using visuals in community engagement.

Public Interest Statement

Men who have sex with other men (MSM) remain a key vulnerable group to new HIV infections. They are a highly stigmatised population in sub-Saharan Africa countries; the stigma has a negative impact on their access to HIV prevention and care. The discriminatory circumstances also affect the implementation of HIV research. For research with MSM to run smoothly, it is important that various other stakeholders are involved. This article shows the potential of using participatory approaches in engaging communities for research involving MSM. The research involved nine focus groups with seven stakeholder groups conducted in coastal Kenya. The findings demonstrate how facilitated film viewings—based on a film called Facing Our Fears—were employed to discuss stigma surrounding homosexuality, vulnerabilities of MSM, and the need for extended health care support for this high-risk population. We found that audio-visuals strategies can support meaningful engagement with communities but should be used in an ethically responsive way.

Competing Interests

The authors declare no competing interest.

1. Introduction

Using visual media in Global Health is considered to be an effective method to communicate health messages to patients and communities (Wressell, Twaites, Taylor, Hartland, & Gove-Humphries, Citation2014), popularize science (Balbale, Schwingel, Chodzko-Zajko, & Huhman, Citation2014), feedback findings to participating populations, and learn about the needs and expectations of communities (Clift, Camic, & Daykin, Citation2010). Visuals have been found to contribute to reduction of HIV stigma (Lapinski & Nwulu, Citation2008), improve mental health (Dougall et al., Citation2012), and build trust between researchers and participants as well as doctors and patients (Clar et al., Citation2014; Dougall et al., Citation2012). Given these advantages, in 2013 Kenya Medical Research Institute (KEMRI), a research group working with people at high risk of HIV in coastal Kenya, made a documentary called Facing Our Fears. It documented experiences of community engagement, and was to share and support discussions about community engagement and research with men who have sex with men (MSM) at KEMRI’s HIV/STI clinic in Mtwapa, coastal Kenya. Here, the authors reflect on the ethical challenges of Facing Our Fears based on facilitated viewings and focus group discussions (FGD).

The documentary tells a story about the KEMRI clinic that was among the first sites in Africa and the first site in Kenya to enroll MSM in studies in preparation for HIV vaccine research and provide care to those MSM already living with HIV. The film explains the difficult setting where HIV prevalence is decreasing in heterosexual relationships but new HIV-infections among male-same sex relations remain very high - HIV-1 incidence: 35.2 (95% CI: 23.8–52.1) per 100 person years (Sanders et al., Citation2013). Additionally, the viewer learns that homosexuality in Kenya like elsewhere in sub-Saharan Africa (apart from South Africa) is criminalized and socially stigmatized, emphasizing the need for research into health care solutions as well as social interventions.

The documentary portrays how in 2010 the KEMRI clinic in Mtwapa was attacked by members of the local community. Attackers were reacting to rumours that the clinic was initiating young men to homosexuality and into same-sex “marriages”; both of which are considered taboo and criminalised in Kenya. The film shows original footage of the attack captured in another documentary Africa’s Last Taboo by Sorious Samura (https://www.youtube.com/watch?v=AVp8V1npqyk Last accessed online 25.10.2016.) with sequences of raging masses at clinic and hateful incitement of religious and other community leaders against homosexuality. Facing Our Fears juxtaposes these images with interviews with attack leaders and victims from 2013, after they have been involved in the community engagement programme, and includes recent reflections with various community members regarding MSM research.

The film shows that while the event was extremely traumatic for both the research participants and the staff, the aftermath led to a revitalised community engagement programme. This engagement programme aimed at not only understanding the prevailing circumstances that instigated the attack but also at establishing a research and engagement agenda beneficial to all involved: the research participants, wider community and researchers. In addition to including the MSM, it was felt important to involve other communities more centrally as well, in order to alleviate misconceptions and stigma about homosexuality and the HIV research and prevention agenda. Facing Our Fears captures these experiences from the perspectives of MSM research participants who were the victims of the attack, as well as members of the local community and religious leaders who led the attack.

Based on numerous interactions with diverse community members, the film reflects what was seen to be an improved atmosphere towards KEMRI and research with MSM on HIV in the Kenyan coastal region. The documentary illustrates the need for continued development of “science-society” relations and finding successful strategies of community engagement in biomedical research with MSM. The film conveys that it is possible to create MSM-friendly services in this fragile and often hostile context for the lesbians, gays, bisexuals and transgender persons (LGBT) in sub-Saharan Africa. It finishes with scenes of a social gathering at the research clinic where the leaders mingle with effeminate men in celebration sharing cake—a huge leap from the past. However, the documentary also highlights that there is a long way to go to ensure that research activities at the clinic can continue uninterrupted, not to mention achieving full recognition of LGBT rights in Kenya.

Facing Our FearsFootnote1 was developed in participation with community leaders and members of LGBT populations, and a risk assessment was done beforehand. Those who felt comfortable to participate were formally consented. However, soon after the documentary was ready for release, in March 2014, the neighbouring country Uganda changed its law regarding homosexuality into one that penalised homosexuals and those working with them (Anti-Homosexuality Act, Citation2014). The move increased security concerns across Africa (Wasanu, Citation2014). According to a report by Sexual Minorities in Uganda this led to a rise in attacks on LGBT individuals and generally a culture of extreme and violent homophobia (Owen, Citation2014) and which also actualised as attacks against HIV research and advocacy organisations and individuals in Kenya (Nordling, Citation2014). These changes underlined already existing ethical concerns and the potential to cause harm with the documentary and that it might not be safe to go ahead with a public release.

Face to face facilitated film viewings (FFV) followed by FGD were then conducted with relevant stakeholders to elucidate and evaluate these fears. It was also aimed to extend the engagement activities and inform the research team about the depth and extent of the outcomes of engagement efforts. In this paper we reflect on the process by which we assessed and weighed on the potential and risks of the documentary.

2. Methods

2.1. Participants and procedures

We conducted nine FFVs with various stakeholders from Kilifi and Mombasa counties of coastal Kenya. The study was conducted between December 2013 and May 2014. Our analysis is based on a total of 122 participants, comprising religious leaders, LGBT activists, health care providers, policy makers and media representatives. Table provides a summary of FGD participants with level of involvement and participation in the community engagement programme with the institution. Other options such as distribution online with an online survey to a wider public were not considered because of the sensitive nature of the subject—it was deemed necessary to gain exploratory, in-depth insights before venturing into wider publics.

Table 1. Participating stakeholders

The FFVs involved watching the documentary with a facilitator who used a topic guide to explore participants’ views after the viewing. At the beginning, the facilitator spent about 10 min providing background information such as history of the film and how the documentary came to be. Participants were briefed about the FGD themes and asked to take note of any issues that would be of concern to the communities they represented. They were asked for either written or verbal consent to participate. The discussions involved all participants from the FFV sessions which were organised separately for each stakeholder group. The viewings and discussions took place in private meeting spaces within different health facilities in coastal Kenya lasting 60–90 min each. The study had ethical clearance from OXTREC, University of Oxford and KEMRI.

During the FGDs, the facilitator first explored the participants’ general views about the documentary and then narrowed down to capture their thoughts about its usefulness as a communication tool; community ownership of MSM research; and perceived security risks if the documentary would be released publicly. As a way of enhancing reliability, during the discussions the facilitator paraphrased and restated participants’ opinions allowing them to confirm or clarify their viewpoints (Mays & Pope, Citation2000). The FGDs were conducted in English and Kiswahili with translations and back translations. No issues arose from the translations and researchers agreed that the translations were a correct interpretation of the discussions.

Discussions were either recorded and transcribed, or detailed notes were taken and verified by participating facilitators. The textual data was coded using NVivo 10 and analysis involved systematic coding, identifying and defining themes emerging from the data, finding associations between concepts, and seeking exemplary quotes and explanations from the data. Data were coded and triangulated by two researchers (BK and SS) generated from the research objectives and identifying new ones as they emerged from the data. The two main themes included: Using a visual tool in community engagement for reducing stigma, and balancing risks and benefits; a summary of the themes are elaborated in Table .

Table 2. Summary themes from the post FFVs discussions with stakeholders

3. Findings

The different participant stakeholders, prompted by the “Facing Our Fears” documentary and guided by a facilitator, discussed the usefulness of the documentary as a communication tool, MSM involvement in HIV research, and potential security risks if the documentary was released publicly. From the discussions two main themes were identified as elaborated upon below.

3.1. Using a visual tool in community engagement for reducing stigma

All focus group participants saw the documentary as a strong visual communication tool with power to enlighten, educate or persuade people. Everybody felt that the documentary highlighted how important community engagement in medical research is. One of the LGBT activists argued that:

The film shows the journey from 2010 to now, and how engaging community is very important. Like the guy who on the beach initially was saying how he wants to burn these people and now sees things differently. Let’s be proud of the achievements that we have made. We shouldn’t dwell on the negative issues. (Male LGBT activist, Mtwapa)

Specifically, the participants reiterated that the documentary demonstrated the value of different stakeholders working together in HIV prevention and that research is possible despite the challenging contexts in sub-Saharan Africa. They expressed that it is important to involve varied stakeholders as a continuous process from the early stages of research onwards with due recognition of different authorities, and collaborative efforts, lest running the risk of breaking bonds of trust between research groups and communities.

Prompted by the documentary, participants expressed their interest in understanding homosexuality and its relationship to HIV. Participants said that the documentary was relevant for many different kinds of audiences and could be used to initiate positive discussions with large crowds as a cost effective tool to discuss HIV and STIs related topics, and that this would be especially valuable for key populations in HIV prevention efforts (such as MSM and sex workers). Participants acknowledged the importance of involving MSM in HIV research to contribute to low HIV incidence and prevalence also among the general population.

The documentary was seen as having the potential to reduce stigma related to homosexuality as well as vulnerability of MSM in general. Especially the health workers considered themselves as agents of change with a role to play in de-stigmatisation of MSMs through creating MSM friendly environments in health facilities and providing healthcare to MSM as they would provide to any other individuals in the community. Several participants spoke of the health rights of the MSM and inclusivity. In the words of one of the health care workers:

We should look at them as community, not only as individuals. They are also part of families, and groups whose individuals we support. (Female clinician, Kilifi)

Several participants expressed that Facing Our Fears could be used as a tool to “educate” communities on why KEMRI in particular conducts research with key populations and raising awareness of the public to understand why HIV control requires key populations at the center of the control efforts.

The documentary will help those in “interior” [rural areas] to know why HIV epidemic cannot be eradicated without including the MSM/gay population. (Male LGBT activist, Kilifi)

Also members of LGBT organizations believed that the documentary provided an opportunity for dialogue between them and the wider community about same sex relationships. Facing Our Fears therefore was also seen as a useful tool not only to stimulate open discussions in relation to same-sex relations but for also airing and clearing homophobic views. In a context where there is strong heteronormative social structure, MSM participants felt the documentary acknowledged their existence although much more was needed to recognise their rights, and one of them suggested:

I think this documentary shows that they [MSM] are there, they can deny it but it’s there. People need to be educated. Even if I had a kid, I will tell that kid that it is a reality. I’ll say that always accept reality, whether you like it or not. (Male LGBT activist, Kilifi)

One of the MSM activists felt that the documentary could support them coming out and serve as an empowering example.

The documentary can empower MSM/gay individuals in closet and encourage them come out. (Male LGBT activist, Mombasa)

Moreover, including MSM into research was seen by many participants as a good way to design appropriate research interventions and in particular members of the LGBT community felt that being part of research could be a channel for advocating for gay rights concealed under the focus of HIV research rather than tackling the contentious issue of right to sexuality directly. They explained that many MSM remain closeted due to fear of being discriminated against and hence lacked the courage to seek help when they needed it.

Despite the general sense that documentary was a good way of supporting and encouraging MSM-relevant HIV research and their health needs, the documentary prompted some participants, especially the religious leaders, media representatives and few of the health care workers to express their views according to which same sex relationships are “outrageous”, “unnatural” and a taboo that should not be allowed to happen. The sense was that while many especially the healthcare professionals are seeing the importance of including MSM in the HIV prevention efforts, this may not reflect deeper personal views of health care workers or the wider communities which shows the importance of weighing security concerns with the benefits of the visual utility of the documentary.

3.2. Balancing risks and benefits

One of the objectives for conducting the FFVs was to assess the value of Facing Our Fears because the research team had fears that it may not be safe to release the documentary to the public following the tensions created by the Ugandan Anti-homosexuality Act in March Citation2014. While there were strong arguments in favour of publicizing the documentary, many participants also reflected on their experiences in changes in the political climate. They argued that it is important to have a “feel” of the political environment before releasing the documentary to the public. Fears of what might happen after public release were varied and ranged from extreme concerns to balanced risk-reduction and the positive potential, positions which were not fixed to a particular participant group.

Several participants across the stakeholder groups expressed that using the documentary could cause a backlash for KEMRI and the HIV research clinic in Mtwapa, members of the LGBT community in the film and other individuals appearing in the film. Irrespective of their position and gender, different stakeholder groups expressed fears for the safety of the MSM participants that featured in the documentary. Many wondered how well the actors were prepared for the outcome of the documentary, questioning whether the cast had taken into consideration the possible reactions if the documentary was to be released to the public given the changing climate. They also thought that the documentary could be interpreted as demonstrating that KEMRI encourages homosexuality, which might trigger another attack on the clinic. For instance, in asking for possible reactions if the documentary was publically released, a health care worker said:

It [HIV prevention research] won’t be possible to continue. Prevention is the key. People might think that you’re promoting and encouraging homosexuality. (Female Counsellor, Mtwapa)

Concerns were weighed up against the possibility of awareness raising. One of the LGBT activists reflected on this stating that there were strong security concerns that related to particular audiences—those who have existing homophobic views who might interpret the film for vitriolic purposes:

When you show the documentary to a person like me there would not be a problem. But let’s not use it as a starting point. Never. Sincerely. For security reasons. There are people out there who have misconceptions about gayism and how he will react is unknown. The point is, you’re trying to use this documentary, (but) my friend, what you’ll face from that point, you’ll never like it. I think we have to use some other ways, some other means, to make the person try to move from this point to the second point, then you can introduce the documentary as a platform. But you have to come up with something fresh (first). (Male LGBT Activist, Kilifi)

While this participant put forward a powerful warning about open release, he acknowledged its potential for “moving people from point to another” and suggested prior sensitization as a way of reducing the possibility of misinterpretations. His reflects a view that a possible negative reception should not be an absolute objection for the use of the documentary but be treated as a way for engaging with practical issues on the ground regarding MSM involvement in health research. One of the government AIDS coordinators suggested that:

Definitely when it is aired, there will be different things. So part of it depends on which shots you’re going to pick. And some of it might create enlightened people, saying yes, there are these people and we need to take care of them. (Female AIDS coordinator, Kilifi)

One of the participants expressed a view that the documentary was not “radical”, meaning that he didn’t see that by focusing on research and engagement the film was against what people in the coastal region believe about gender relations and sexual relationships. Hence, he thought it would not provoke negative reactions, but rather create awareness and reduce chances of possible future attacks. According to this view, some participants thought that not releasing the documentary would surmount to contributing to existing stigma which ultimately has the potential of increased HIV infections, secrecy, and denial of the existence of MSM and LGBT in the region. This view was vocalised by one of the health care providers:

Refusing to air this documentary would fuel denial and increase HIV infections across the community. (Male clinician, Malindi)

In the end, there were reservations of the positive slant of the documentary regarding improved community relations. Especially the LGBT activists thought that this was not representative of what is happening on the ground. Some questioned the representativeness of the chosen actors and questioned what they were saying as not reflecting the wider community’s perspective on same-sex relations especially outside Mtwapa, in areas where engagement efforts have not been implemented. Participants therefore suggested that how the documentary would be received would depend on the context and proposed that to be on the safe side, in its current form the documentary should only be used in specific contexts; it was a useful and non-controversial tool to people who had already been sensitised in MSM health issues while concerns remained for others. They recommended a tailor-made training package to accompany the documentary with selected audiences and that it should only be aired in facilitated and targeted situations.

4. Discussion

Possible hostile viewings aside, our findings suggest that Facing Our Fears was seen as a success story of community engagement in HIV research involving MSM under difficult circumstances. Participants felt that the film highlighted the need for involving different stakeholders in community engagement efforts and making the process a continuous and collaborative one especially in difficult contexts such as in sub-Saharan Africa. Particularly in this region, ethical reflection is crucial since populations at high risk of HIV face significant challenges in accessing healthcare due to stigma and discrimination, and political and social hostility (Smith, Tapsoba, Peshu, Sanders, & Jaffe, Citation2009). At best, facilitated viewings of Facing Our Fears acted as a prompt for discussions that addressed sexuality and HIV-related stigma. It provided an opportunity for dialogue between MSM and the wider community as well as a platform for open discussions regarding same sex relations and the importance of involving MSM in HIV response as a film allowed for engagement with several people at the same time (Parsons & Lavery, Citation2012). According to Parsons and Lavery (Citation2012): film has the potential to promote “respectful interactions among those with seemingly divergent views on a controversial topic and help discover critical points of divergence that may represent pathways for improvement.” They can inspire political activism, and influence policy-making, objectives that Facing Our Fears might, at best, achieve.

The challenge for demonstrating good practice in engagement using visuals—to work with various stakeholders for a joint objective of reducing HIV and creating more positive health outcomes for people at high risk of HIV and LGBT communities in homophobic environments more widely—derives from the hostile context in sub-Saharan Africa. Depending on the audience, visuals often stand a chance of being misunderstood, as Hugo and Skibbe (Citation1991) and Clar et al. (Citation2014) have shown. While comparing textual literacy and visual literacy, they point to the need of testing visual messages and working in participation, to guarantee that key messages are not missed or misconstrued. With commitment to the ethical principle of “Do no Harm”, it is important to ensure that film does not generate to further harms or stigma, as visuals have been shown to contribute to stigmatisation (Johnny & Mitchell, Citation2006), for instance with obese people (DePierre, Puhl & Luedicke, Citation2013), people living with HIV (Varas-Díaz & Toro-Alfonso, Citation2003), mental health (Stout, Villegas, & Jennings, Citation2004) and cultures of domination in relation to class, gender, sexuality and knowledge systems (Khan, Citation2014).

Clearly, careful assessment is needed in both how those depicted in documentary are represented as well as how the documentary may be received, especially when dealing with sensitive topics. In thinking of ethics of image-based research, the same guidelines as those that regulate research in general apply. For instance, Clark, Prosser, and Wiles (Citation2010) have emphasised issues of consent, confidentiality, and anonymity and analysed how these might be a challenge when dealing with images that can reveal identities. They suggest, however, that ethical considerations of film should go beyond these principles and give due consideration to context as a situated, on-going process of negotiation and experimentation (Clark et al., Citation2010). Similarly, Banks (Citation2007) and Denzin (Citation2003) argue that ethical challenges require researchers’ evolving and adaptive ethical awareness and practice.

Given the safety concerns reported during the FFVs and expressed by some of the MSM appearing in the documentary shortly after the production given the legal change in Uganda (Van der Elst et al., Citation2014), our researchers opted to blur the faces of MSM who participated in the film. Besides, we decided not to release publicly a film which could be interpreted as “promotion” of homosexuality, with associated risks, and will continue to use the film under guided facilitation.

In conclusion, given the ethical and security concerns, our findings highlight the social complexity of the setting—reflected in the differences in views within and between groups which were not aligned by whether participants were researchers, healthcare staff, LGBT activists, religious leaders or media representatives as well as the different perspectives regarding researchers responsibilities in research involving marginalised populations such as MSM as well as expectations for engagement (Molyneux et al., Citation2016). A central tenet of the proposed FFV approach is a guided post-film discussion that intends to explore debates, ideas and issues more deeply. Unlike non-facilitated film that is only likely to be thought-provoking and run the risk of being misunderstood, FFV encourages vivid interactions and focused discussion. FFV therefore presents a form of brokered dialogue in which it can be used as a means for public engagement, social intervention and knowledge translation (Parsons & Lavery, Citation2012). This way, the importance of publicising the positive examples and strategies of working with marginalised MSM groups in sub-Saharan Africa is not negated while also being cognisant of the security and identity of those participating in that process and the broader implications that a film may have.

Limitations to this study must be noted. Although there were some exceptions (Table ) many participating stakeholders had been involved in KEMRI community engagement programmes, including MARPS online trainings (www.marps-africa.org) which are aimed at sensitizing health workers on MSM appropriate health services. The views presented therefore may not be a representative of other similar stakeholder groups in different settings. This reflects the importance of engagement efforts beyond the current context in order to build more elaborate and supportive HIV research networks that further the rights of LGBT people in Africa.

5. Conclusion

In this article we have engaged in a situated ethical analysis that has aimed to generate critical thinking of the use of visual media as a communication tool and the ethical concerns that may arise from its use in a homophobic environment. The facilitated post-viewing discussions of “Facing Our Fears” documentary underscored the potential and challenges of using visuals in a complex realm of community engagement in research with MSM. With these audiences who were generally supportive—probably owing to the engagement that many of them had been part of in the past—the documentary elicited support for HIV research with MSM and showed the possibility to promote respectful “brokered dialogue” in support of continued public/community engagement initiatives in biomedical research. Participants also raised the need for caution. Therefore, we argue, that using film for public engagement should be supported by careful assessment of the possible impact that the process might have and be responsive not only to ethical concerns but also changes in the political climate. Tailor-making the facilitation based on knowledge that audiences can accept and identify with can generate positive impact and action for all involved, but being ethically mindful and adopting “do no harm” principle should take precedence.

Funding

Support for this work was provided by International AIDS Vaccine Initiative and Global Health Bioethics Network whose capacity building activities are supported by a Wellcome Trust Strategic Award [grant number 096527].

Acknowledgements

The authors thank all the different stakeholders for their ongoing support and in particular their participation in the FFVs and their willingness to openly share their views hence making the discussions richer.

Additional information

Notes on contributors

Bernadette Kombo

This project was initially conceived by Elise van der Elst, Sassy Molyneux and Eduard Sanders, who designed it together with Evans Gichuru, and Salla Sariola. Bernadette Kombo and SS conducted the FGDs, analyzed the data and wrote the first draft of the manuscript. EvdE’s research has produced new thinking, evidence and recommendations around strengthening key players’ involvement in health service delivery for key populations in general and MSM specifically. SS’s work has focused on social studies of biomedicine and bioethics as well as gender, sexuality and marginality. All authors have been a part of the community engagement efforts for the HIV vaccine preparatory research at the Kenyan coast that is led by Dr Sanders as the principal investigator. Together, we represent researchers and public health professionals dedicated to ethically responsive conduct of HIV research, and more importantly to the control of HIV infections including among disproportionately affected communities.

Notes

1. Film was funded by USAID through IAVI, and Wellcome Trust. Director was Abisae Maeda and production by Kilimanjaro film institute.

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