Co-Production and Culturally Sensitive HIV Health Promotion

Chase Ledin and Ese Johnson discuss the role of co-production in HIV health promotion and working with ethnic minority communities.

In June 2023, Waverley Care, a Scottish HIV and Hepatitis C charity, launched ‘Culturally Sensitive HIV Testing and Treatment’. The project developed a series of video resources on delivering ‘culturally sensitive’ healthcare in the context of HIV testing and pre-exposure prophylaxis (PrEP) prescription for people from minority and ethnic communities. Given persistent inequalities in HIV transmission rates for these communities, and the limited resources for preparing health professionals to speak with patients ‘in their own terms’, Waverley Care brought together community members with health practitioners. Through workshops, they discussed, simulated, and devised encounters that more meaningfully align with their lived experience(s) and their ways of talking about and negotiating HIV testing, treatment, and safer sex practices. Ese Johnson, Development Manager for Minority Ethnic Health at Waverley Care, described the project as emerging from ‘extensive conversations with clinicians on the challenges they face when discussing HIV and PrEP during sexual health consultations’. Clinicians felt that further investigation and integration of community voices might better support awkward or difficult encounters, especially when individuals did not see themselves as aligning with the ‘profile’ of someone ‘at risk’ of HIV or STI transmission.

The project utilised workshops with community members to ‘understand how they would like these conversations to go when accessing sexual health services, which helped dictate the scenarios presented in these videos’. As such, it highlighted how community members can contribute to service provision and innovation and how/why community members might be involved in ‘co-production’ of health knowledge, resources, and improvement programmes.

Smiling man in purple t-shirt with a yellow print on it that says Waverley care

Co-production is a concept used to describe the involvement of individuals, communities, and publics in research, service use, and policy innovation. As Filipe, Renado & Marston suggest, ‘In health, and alongside user and community participation, co-production is described as a way of working together to improve health and of creating user-led, people-centred health care services’ (2022: 1). The authors identify professional perceptions of the ‘revolutionary’ potential of co-production and the ‘fad-like’ nature of involving patients and communities in complex healthcare reform. For this article, I (Chase) spoke to Ese to explore the practice, meaning, significance, and outcomes of co-produced health promotion work, in order to think about how and why co-production might be both useful and limited in HIV health promotion.

Co-Production

Ese and I met in November 2023 to discuss the community workshops that were used to develop the Waverley Care videos. Ese described how the workshops explored ‘information to be able to feel confident enough to ask questions or [to] follow-up on what elements [or] principles that someone in the clinic might want to discuss’, including how participants wanted multiple care options and for clinicians/those they interacted with to avoid making assumptions about individual lifestyles.

An aspiration towards ‘shared principles’ was a driving force for Ese who said ‘I think (I hope) everyone felt like they all had equal responsibility and equal ownership’ in the process of talking to clinicians. The workshops involved collaboratively settling on a script, ways of acting out scenarios; and creating a ‘conversation’ that helped to build ‘a connection of people who are genuinely interested in HIV health promotion, who are not already living with HIV’. One of the key points, then, was building dialogue between clinicians and individuals within the workshop collective, articulating the value of co-production not simply as an end-product involving interested stakeholders but also as a relationship-building process by and for those involved. Ese described this process as ‘creating a culture’ that facilitated conversations about why individuals may or may not listen to, empathise with, or engage with routine discussions about HIV testing, treatment, or prevention messages.

Know Your Status [YouTube]. Credit: Waverley Care (2023).
Alt Text: YouTube video of a clinician sharing culturally sensitive information about HIV testing and treatment with a patient.

For Ese, the co-production process involved balancing clinical priorities, on the one hand, and community values, interests, and ways of life, on the other. Hence, when Ese discussed the alignment of these workshops with the biomedical aspiration to ‘get to zero new HIV transmissions,’ part of the co-production process involved negotiating expectations between clinical aspirations and the lived realities of those participants involved within the communities. Given the nature of the project, which was to create resources for healthcare providers – particularly for training and professional development purposes – it comes as no surprise that clinical and biomedical priorities steered conversations towards biomedical interventions, including antiretroviral treatments for HIV infection (ARVs), post-exposure prophylaxis (PEP), PrEP and condom use. However, Ese also articulated a clear tension between this biomedical priority and how to frame ‘the right fit’ for particular individuals in ethnic minority communities – as expressed by participants. Some individuals may find conversations around biomedical interventions misaligned with their own lifestyles, behaviours, practices, or ways of living, and thus the biomedical-first approach may not speak (immediately) to these individuals.

Ese spoke about participant interest in ‘autonomy’ and the right ‘to choose if they want or not to use the services. He recognised that it is the first step’ in providing holistic care that has encounters within the clinic but lives necessarily outwith the clinic walls. In refining the collaborative scripts for the videos, Ese reflected on the movement from ‘risk-based’ paradigms, including historical gestures towards individuals or groups who statistically had been at higher risk of HIV transmission, to ‘information for everyone’: a gesture that, for him, meant moving toward equitable access to both treatment and care. This also meant coming to terms with HIV treatment and prevention not simply as a biomedical industry and practice, but also a culture of tenderness for multiple ways of living with, amongst, or beside sustained HIV and STI transmissions in minority ethnic communities.

A Culture of Tenderness

Ese’s aspirational principles pushed his ideas beyond clinical walls towards the heart(s) of community values and ways of life. Ese described working with and involving communities as building a ‘culture of tenderness’ which acknowledged and integrated healthcare as a ‘scientific’ practice, but also foregrounded the value and role of emotions and the ‘emotional side of public health’. Ese explained that part of developing culturally sensitive health promotion means not only attending to the biomedical instruments and behavioural changes commonly understood as the gold standard(s) global aims to end new HIV transmissions by 2030. Doing this work, co-producing materials and resources, involving community members, and integrating community perspectives and experiences, attends to the ‘sensitive’ and ‘emotionally triggering area[s] of healthcare’ which are sometimes dismissed within scientific aims to scale-up biomedical intervention strategies.

What stood out in Ese’s reflections was that a culture of tenderness involves thinking closely and critically about care. What constitutes care? Care, as Maurice Nagington reflects, requires mutuality, connectedness, and patience, ‘which market logics have no vocabulary for, nor any way to capture and measure’ (2023: 407). Existing within strategies for healthcare innovation and disease elimination, care is a principle and aspiration of healthcare and medicine, even whilst its practice is multi-varied and atomised within specific healthcare contexts. Care within the centrifuge of biomedical and pharmaceutical innovation becomes a separate and small practice within the imagined assemblage of ‘ending AIDS’ (Sandset 2020). Ese drew out this point in his reflections on staying with the ‘emotions’ of public health, articulating how co-production requires care at the centre rather than the periphery of healthcare innovation. Care, in Ese’s terms, means staying with the communities and amplifying their voices, and not letting go once the collaboration is done and the videos are shared with the public. Care and co-production are interlinked, and their separation reinforces the atomising effects of pharmaceutical and biomedical innovation.

What I am briefly articulating here is that care is a precarious and intentional process, which co-production enables but only if the process and involvement creates careful conditions that prioritise community perspectives and ways of knowing. Co-production and resource development provide exceedingly useful tools for engaging and sensitively supporting individuals and communities. But co-production also risks isolating individuals, communities, and publics in the name of providing ‘sensitive’ inclusion if it does not stay with community support, wellbeing and their futures. When the project ended and the video resources for healthcare providers had been produced, Ese reflected that his understanding of co-production has transformed (even in a small way). He now thinks about how to include community ways of knowing about and caring for each other at the centre of his practice and as a central priority in inclusive health promotion.

Conclusion

Culturally sensitive HIV health promotion that involves communities and lived experiences positively contributes to better resources and healthcare provision in clinical settings. The ‘Culturally Sensitive HIV Testing and Treatment’ project demonstrates the unique value of this approach, especially through collaboration between healthcare providers, charity workers, and community members. As my chat with Ese Johnson reveals, the role and value of co-production in the making of public health and new health promotion strategies depends upon the construction, investment, participation, and relevance of the co-production process for members of the public. Crucially, Ese highlighted the need for centring and attending to emotion and tenderness in the process and making of health promotion practices and resources, because it is the emotionally ‘sensitive’ aspects of public health that are regularly lost to formal metrics and evaluation. Further reflection on care, and care(ful) praxis (Care Collective 2020), will enable healthcare providers to better attend to communities and their ways of being in the world as priorities of rather than for healthcare innovation.

Terminology

Pre-exposure prophylaxis (PrEP): a combination drug used to prevent HIV transmission when taken by someone who is HIV negative. PrEP has been available for free at point of access via NHS Scotland since 2018.

About the authors

Chase Ledin is a Lecturer in Social Science and Medicine at the University of Edinburgh. His research explores sociocultural transformations in sexual health and HIV/STI innovation technologies and practices. Follow Chase on Twitter/X @chaseledin.

Ese Johnson is Development Manager for Minority Ethnic Health at Waverely Care. In this role, he shapes work with minority ethnic communities and extends current projects communicating sexual health and HIV prevention messages. Before joining Waverley Care, he worked at Terrence Higgins Trust in community engagement and health promotion.

References

Care Collective. 2020. The Care Manifesto: The Politics of Interdependence. London: Verso.

Filipe, Angela, Alicia Renedo, and Cicely Marston. 2022. The co-production of what? Knowledge, values, and social relations in health care. PLOS Biology 15 (5): 1-6.

Nagington, Maurice. 2023. “What can queers teach us about nursing ethics?” in: Martin Lipscomb (ed). Routledge Handbook of Philosophy and Nursing, 404-414. London: Routledge.

Sandset, Tony. 2020. ‘Ending AIDS’ in the Age of Biopharmaceuticals: The Individual, the State, and the Politics of Prevention. London: Routledge.

Waverley Care. 2023. HIV testing and PrEP: how to talk about it in a culturally sensitive way. Online resource. Jun 2023. Accessed: 3 May 2024.

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