Addressing HIV stigma in healthcare settings in Ireland: Lessons learned from a collaborative study
HIV stigma – What’s the problem?
Immense progress has been made in the treatment of HIV in recent years. People living with HIV now have life-spans close to par with HIV negative individuals, and do not transmit the virus once patients have reached the treatment goal of viral undetectablity, commonly referred to as undetectable equals untransmittable or U=U. Despite these advances, HIV-related stigma remains an on-going issue that affects the lives and well-being of many people living with HIV. There is clear evidence that experiences of HIV stigma in healthcare settings have adverse impacts both for the health and well-being of people living with HIV and population health. People living with HIV who experience stigma in healthcare settings often have difficulty trusting healthcare providers, and this can result in health avoiding behaviours. As a consequence, some may put off appointments, delay seeking care, or have poor engagement and retention in care. Such behaviours have obvious knockon effects for the health of the patient. Indeed there is evidence also that experiences of stigma in healthcare settings are linked to poor adherence to anti-retroviral medication (ARVs) and viral non-suppression. Apart from physical health outcomes, Stigma can also affect the mental health.
While stigma can lead to worse health outcomes on an individual level, the barrier to testing, treatment and care caused by stigmatising behaviours, also
has implications for health on a population level. For these reasons, addressing HIV stigma in health settings is a priority prevention goal in efforts to stem the epidemic. Up until recently however, no data on HIV stigma in healthcare settings in Ireland was available.
HIV stigma in healthcare settings in Ireland
In 2022, our team in the Health Promotion Research Centre in the University of Galway sought to address that gap by conducting a collaborative mixed methods project involving participation from healthcare workers and people living with HIV in Ireland. Among the aims of the project was to identify key drivers of stigma in healthcare settings, in order to provide a sense of where efforts for intervention may be targeted. Over 400 people were involved in the research, which included national surveys of people living with HIV and healthcare workers, interviews with a range of stakeholders, and a participative roundtable event to generate recommendations arising from the research findings.
Findings from the survey of 298 healthcare workers, suggested that generally healthcare workers do not hold negative attitudes towards people living with HIV. Rather fear of occupational transmission of HIV appears to be a major driver of stigma in healthcare settings. For instance, 40% of respondents reported they would worry at least a little about drawing blood, and 29% about dressing a wound of a person living with HIV. Casual contact was not a source of worry for healthcare workers, however approximately a fifth of healthcare workers reported using special measures that they do not use with other patients. This suggests that anxieties around occupational transmission are frequently
translating to stigmatising practices, including double-gloving and use of other unnecessary infection prevention measures. Indeed this was echoed by several interviewees, including one doctor who observed, ‘You do get people that will say “Oh that patient has HIV, make sure to wear two pairs of gloves.’ Similarly, a nurse who was interviewed remarked, ‘I think that there’s still the “I’d rather stay away from them just in case.” There’s still a fear aspect of getting it.’
Stigmatising practices were also reported by the 89 people living with HIV who completed the survey. Of these respondents, 26% reported having experienced a healthcare worker using infection control measures beyond the usual, 24% reported being told to come back later, put last in a queue or being made to wait until the end of the day, and 20% reported having been denied services. Negative experiences were recounted by interviewees who were living with HIV, with one woman describing the reaction of one healthcare worker: ‘I said “I’m HIV positive” and she just basically jumped out of her seat.’ Stigma experienced by people living with HIV often seemed to additionally be driven by outdated views and a lack of knowledge about HIV. One man described being told by a healthcare worker: ‘I can’t have you in the gym in the hospital because then it will have to be cleaned … so it would be a whole afternoon of no one else being able to use it because you’ve been in.’ The effect of such experiences was also apparent, as two-fifths of respondents reported avoiding care as a result of concern that the healthcare worker would disclose their status to others, and over a half reported avoiding care because of their worry about how they would be treated by healthcare workers.
How can we address the problem?
Fear of HIV transmission was one of the key identified drivers of stigma in healthcare settings in Ireland. While occupational exposure can be extremely anxiety-inducing for healthcare workers, increasing knowledge of U=U, appropriate implementation of universal precautions, and effective communication around the availability and effectiveness of post-exposure prophylaxis (PEP) should help ease healthcare worker anxieties and reduce the
prevalence of stigma behaviours in healthcare settings. Targeted, evidence-based messages around U=U may be effective as a relatively low-cost and scalable stigma intervention. We also asked healthcare workers, people living with HIV and service providers in our study how stigma might be reduced in healthcare settings. Suggestions included: emphasising a culture of professionalism, and showing respect and empathy to patients; increasing knowledge of HIV and stigma; leadership from management and senior clinical staff; facilitating opportunities for training and education; and codevelopment and implementation of policies, guidelines and codes of practices.
Addressing stigma to reach the 2030 targets
As a member state of the UN, Ireland is committed to the Sustainable Development Goals, of which Goal 3.3 is committed to ending AIDS by 2030. Since 2019, with government support, the cities of Galway, Cork, Limerick and Dublin are also signatories to the Fast-Track Cities Initiative and the Paris Declaration. By signing the Paris Declaration, cities commit to accelerating and scaling up the local HIV responses to attain the UNAIDS 95-95-95 targets for 2030: 95% of People living with HIV (PLHIV) know their status, 95% of people who know their status are on treatment and 95% of people on treatment have an undetectable viral load. The UNAIDS Roadmap for Prevention articulates another set of parallel targets – the 10-10-10 targets –of which one states that by 2030 less than 10% of people living with HIV will experience stigma and discrimination.
Our findings indicate that we have some work to do before these targets will be reached. Armed now however with knowledge of where the issues lie, we have an opportunity to develop stigma interventions that will reduce healthcare worker anxieties and improve patient experiences and outcomes. Changing perceptions and removing the fear of HIV will be of benefit to everyone. As one nurse we interviewed noted: ‘Healthcare staff are going to come across HIV. People live with it now. Let’s normalise it, you know.’
The full research report is available for download: https://aran.library. nuigalway.ie/handle/10379/17830
Written by Dr Elena Vaughan, Research Fellow in the Health Promotion Research Centre in the University of Galway. Her work is focused on HIV stigma, social and structural determinants of health, and right-based approaches to health.
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