Case study: Delivering an HIV prevention workshop with DeafLGBTIQA

As part of Sexual Health Week 2019, which takes place from Monday 16 to Sunday 22 September, we look back at how partners in the HIV sector delivered an HIV prevention workshop in April 2019 with deaf LGBTIQA people.

HPE, along with the Bloomsbury Network, IWantPrEPNow and Prepster, supported deaf-led LGBTIQA group DeafLGBTIQA to host a successful workshop that provided HIV prevention training to more than 30 deaf people in London.

The event focused on HIV testing and pre-exposure prophylaxis (PrEP), as well as information on condoms and treatment as prevention.

This was the first event of its kind to be organised by DeafLGBTIQA. The group worked with the Bloomsbury Network at Mortimer Market Centre to host and provide expert speakers for the evening, as well as inviting a deaf person living with HIV to share their journey with the virus.

The aim of the collaboration was fourfold:

  • To raise awareness of the availability and types of HIV test to a population at risk of HIV.
  • To raise awareness of the availability of PrEP, including where to access it and how to take it.
  • To distribute condoms and HIV/safer-sex information resources to deaf LGBTIQA people.
  • And importantly, to raise awareness to health professionals who work in HIV prevention and health promotion of the barriers faced by deaf BSL users.

Deaf British Sign Language (BSL) users often face issues accessing health information and initiatives due to ineffective communication from healthcare professionals, or even a complete lack of accessible means to receive the information.

Captioning and other text-based services can assist with relaying information, but face-to-face delivery from sexual health experts, via interpreters and in partnership with deaf role models, provides an engaging way to provide important information.

There are a number of barriers that hinder the provision of accessible information to deaf people, which can lead them to assume a service will be inaccessible by default. Health services are often developed in ways that adversely impact on the way deaf people can access them:

  • Telephony services can be a physical barrier to booking appointments or making contact with services.
  • There is a lack of awareness that not all BSL users have adequate literacy levels to understand clinical or technical language, or to be able to book appointments online.
  • Healthcare professionals often do not know how to book BSL interpreters, and some deaf people report services failing or refusing to book one.

Resources and support for the workshop, including funding for interpreters, were provided by HPE, IWantPrEPNow and Prepster.

DeafLGBTIQA was successfully able to create an accessible event for a community which are traditionally left behind or who’s needs are not fully considered. Some of the successes included:

  • Providing a safe and inclusive space for participants to discuss HIV and PrEP, which for many was the first time communicating with others on the subject.
  • Connecting 35 deaf LGBTIQA people with approximately 10 health and community professionals working in HIV and sexual health, who were able to learn about the different needs of deaf people.
  • Providing free condoms, lube and HIV/sexual health resources to attendees.

The event successfully raised awareness and knowledge in a number of key areas, given that some people attending the event had never heard about interventions like PrEP before. On a scale of 1-10, all the key areas covered by the workshop showed an increase in knowledge among attendees:

  • HIV: an increase from 6.9 before the event to 8.8 after.
  • HIV testing: an increase from 7.1 to 8.9.
  • PrEP: an increase from 5.0 to 8.4.

To find out how you can make your services and projects more deaf friendly, please contact Deaf LGBTIQA:

Email: [email protected]
Twitter: @DeafLGBTIQA
Instagram: @DeafLGBTIQA

Assisted HIV self-testing and self-sampling by community-based organisations in England

There has recently been a move towards online provision of HIV self-testing and self-sampling for people to test themselves. Our local activation partners, the GMI Partnership, comprised of Positive East, METRO and Spectra have been looking at how self-testing and self-sampling can be incorporated into current and future community-based HIV testing and outreach services.

There are questions about how community-based organisations can incorporate self-testing and self-sampling in their work, in order to increase access to testing for those who need it.

The GMI Partnership is a consortium of three community-based agencies (Positive East, METRO and Spectra) who provide sexual health promotion and HIV prevention services across London. In collaboration with Freedoms, the GMI Partnership deliver condom distribution and an outreach service for men who have sex with men (MSM) funded by the pan-London HIV prevention programme, as part of the Do It London campaign. Dee Wang, Research and Performance Manager at Spectra, tells us about how they are addressing self-testing and self-sampling.

‘Conducting extensive surveys via Grindr and through our face-to-face work in high-risk venues, we asked high-risk MSM about self-testing and self-sampling in a community-based setting,’ she said. ‘What we found was that community-based testing and outreach complements self-testing and self-sampling.’

Of the 2,889 MSM who undertook their survey over Grindr:

  • Only 22% understood the difference between self-testing and self-sampling.
  • Of those who did understand the difference, 30% still preferred to be tested by a professional.
  • Of the 2,889 men, 33% would prefer to be coached on how to self-test or self-sample before doing it themselves.

‘This data indicates that there is still work to be done around informing the community on the differences between self-testing and self-sampling (especially as this was a relatively HIV literate group, with 73% and 71% having heard of PEP and PrEP respectively),’ Dee said. ‘Secondly, it shows that there will always be a group of men who prefer to be tested by a professional.’

‘The finding which also stood out was that 33% of the MSM surveyed would prefer to be coached in the use of self-tests/ self-sampling tests before doing it themselves,’ said Dee. ‘These findings led us to develop the GMI community coaching model.’

GMI community coaching model

The GMI Partnership now provides community coaching with HIV testing. ‘We coach individuals on how to use both self-testing kits, and self-sampling kits. If desired, we then use the self-test kit as a point-of-care test (POCT),’ explains Norman Gillard, one of the GMI Partnership Outreach Coordinators from the METRO Charity.

Of the 159 men who GMI have so far provided with community coaching:

  • 96% agreed that they were able to better understand how self-testing for HIV works after being coached.
  • 80% felt more confident with the GMI worker supporting while doing a self-test.
  • 69% believed that they would be more comfortable to test themselves next time.

‘The GMI Partnership has always recognised that for many individuals, community-based services are the first step in a health care journey from an outreach venue into a clinic. The same may be true with self-testing and self-sampling. With the coaching model, 69% of individuals felt more comfortable with testing themselves in the future,’ Norman pointed out.

‘Still, we need to recognise that there will always be those who need to test but who would rather access services in their own community settings’.