HIV Rural Road Show 2012: issues of disclosure in rural and regional New South Wales

HIV Australia | Vol. 10 No. 2 | October 2012

LANCE FEENEY and MELISSA WOODROFFE summarise concerns raised by local community members at a series of HIV treatment forums.

Background

Throughout 2012, Positive Life NSW hosted a series of HIV Community Forums in Regional NSW and Sydney. The National Association of People Living with HIV/AIDS (NAPWA) and the HIV/AIDS Legal Centre (HALC) agreed to join the program and the Community Forums aimed to provide up-to-date information on the current health and treatment issues for people with HIV, identify barriers to achieving good health and identify gaps in local services.

Program areas included:

ageing, HIV and other health conditions
an overview of new research on the health and transmission benefits of highly active antiretroviral therapy (HAART)
information about new Medication Access Schemes in NSW
HIV-associated legal issues
regional and rural issues.

This article highlights some of the issues that were identified during the forums, in particular the concerns raised by HIV-positive people in regional areas connected with attending a community forum where their HIV status would be known to other participants.

Participants identified a range of issues experienced in a regional or rural area.

Many participants described a shortage of specialist GPs able to prescribe HIV medications in their local area.

People also said they had difficulty maintaining continuity of health care, having to regularly change providers due to the frequent turnover of GPs in rural and regional areas.

While rents are cheaper than in metropolitan areas, participants said that other costs (such as food, and car costs) are more expensive.

Most people in regional/rural areas have to travel by car, and the cost of maintaining a private vehicle is difficult for those on limited incomes; public transport is also costly and services are limited.

Not all people in regional/rural areas have access to a computer or can afford internet services. Internet speeds are slow in many areas and this affects download speeds and ease of accessing information when surfing the net.

It is important to note that many participants also commented on the significant benefits of living in a rural and/or regional area; including the slower pace of living, lowered stress levels, cheaper rents and more personal time available to them.

Fear of disclosure

The main issue that arose from all except the Bangalow forum was a reported fear of disclosure of HIV status to other community members as a result of attendance at the forums.

Fear of HIV disclosure and being ‘outed’ within the local community and to family members was confirmed by service providers as a common reaction amongst rural and regional people with HIV, particularly among Aboriginal and Torres Strait Islander people.

HIV-positive women in regional NSW generally expressed fear of anyone knowing their HIV status.

Some HIV-positive heterosexuals said they preferred not to attend forums that they perceived as being exclusively for gay men with HIV.

Forum participants reported the steps they took to preserve their confidentiality.

Some preferred to travel to a sexual health clinic or hospital pharmacy some distance away from their home location because of concerns over family and/or friends working at the local clinics becoming aware of their HIV status.

In some cases, people said they were prepared to travel up to 400 kilometres to obtain confidential clinical care and HIV medication.

Specific issues by region

Dubbo

There was very low attendance of HIVpositive people at the Dubbo forum, but a notably good attendance from local sexual health clinic staff. The HALC solicitor was able to meet with several people with HIV on a one-to-one basis at the sexual health clinic separately from the forum.

These clients indicated that they were not willing to risk disclosing their HIV status to others by attending the community forum. Sexual Health Clinic staff who attended the forum reported a similar reluctance of clients to attend sexual health outreach clinics because of fears that clients would be seen attending the clinic and that assumptions would be made about their HIV status.

The Dubbo forum presented an opportunity to talk with sexual health clinic staff about the latest health and treatment research.

It also presented opportunities to discuss strategies to modify preventable risk factors in developing age-related health conditions, and to discuss access to HALC services.

Discussions about the legal responsibility of health care providers to adhere to professional standards of conduct provided a better understanding of disclosure in health care settings and privacy protections, more generally.

Tamworth

There was similarly low attendance of people with HIV at the Tamworth forum but a number of local sexual health clinic staff participated.

Local service providers, who had spoken with potential participants, provided feedback as to why clients chose not to attend the forum and in addition to the general issue regarding fear of disclosure; a number of additional reasons included:

Access issues: more than 50% of Tamworth Sexual Health clients live outside Tamworth. Some clients live a very long distance away from Tamworth.
Weather: the forum was held in July, in very cold weather. In outlying areas, especially to the north, the winter is extreme – ‘miserable’.
Issues of Aboriginal identity: some Aboriginal and Torres Strait Islander people are reluctant to engage due to a complex range of issues. The community is small and breaches of confidentiality via gossip are reported as problematic. Other conflicting priorities include family and social responsibilities. Amongst Indigenous clients there may have been a perception that the forum was a ‘white’ event.
Workforce/care issues: Many people are caring for families and have social responsibilities. Attending a forum is yet another imposition on their time.

Bangalow

The reluctance of participants to attend a community forum for HIV-positive people in Tamworth can be contrasted with comments from the participants at the comparatively well-attended Bangalow forum.

Twenty-three people from the local area (Lismore and surrounds) attended this forum. This difference might be attributed to the relatively high number of people with HIV and people who identify as LGBTI residing in the Lismore area, many of whom relocated from Sydney. Lismore and surrounds has a very high LGBTI population and is often referred to as the ‘rainbow region’.

This difference in engagement may also result from higher levels of community connection and from social support programs run by ACON’s Northern Rivers branch, located in Lismore.

A number of participants commented on the value of such forums in terms of networking with other HIV-positive people from the local areas.

HALC has previously held community legal education sessions in the Lismore and Tweed Heads region with sexual health clinic staff and people living with HIV. These sessions have also been well attended.

It was encouraging to note that during the forum a number of participants commented on the valuable holistic approach taken by their HIV doctor in Lismore and by staff at ACON Northern Rivers.

Participants reported that their treating specialist and other service providers had assisted them with referrals to HALC for legal problems, and to ACON for assistance with housing issues, for example.

Albury

The Albury forum was cancelled due to low registrations. Fallout from the Coroner’s Inquest into the death of a gay man from the region in November 2011 – see the article by Iain Stewart Brady on page 33 – continued through the period when the forum was scheduled.

The reporting in local papers about the HIV status of witnesses before the inquest (many of whom were also clients of a local Sexual Health Centre), caused high levels of distress amongst HIV-positive locals. It was therefore unsurprising that in such a climate, the incentive to attend the forum was low.

Newcastle

The main issue that arose from the Newcastle forum was the discriminatory behaviour of the staff at the venue toward participants. The forum venue was a GLBTI friendly hotel in Newcastle and the room where the forum took place was adjacent to the venue’s kitchen/servery.

During the forum there was a lot of background noise from the kitchen; however, of greater concern was the unhelpful, unaccommodating and discriminatory behaviour of the kitchen staff.

As the forum progressed, the staff became increasingly hostile and aware of the HIV-related issues being discussed. Noise levels increased with what appeared to be deliberate attempts to disrupt the forum. One participant advised that kitchen staff were heard to exclaim ‘they have AIDS!’, and laugh.

These comments are stigmatising, discriminatory and unacceptable, and are at odds with the venue’s claims as being ‘GLBTI friendly’. Positive Life NSW has complained to the venue and has apologised to participants.

Conclusion

The forums provided a valuable opportunity to engage with and provide support, information and advice to people living with HIV in rural and regional areas of NSW.

People in rural and/or regional areas face increased isolation and lack of access to support services in comparison to those residing in the inner-city or suburbs of Sydney.

The forums were intended to develop and enhance the links between people with HIV and Positive Life NSW and its partner organisations, as well as provide opportunities for HIV-positive individuals in regional and rural areas to network and share information with others.

Despite the small number of people at some of the forums, the program was well received by those clients and service providers who attended.

Respondents to the evaluation survey clearly valued the opportunity to participate in the forum and thanked Positive Life, NAPWA and HALC for organising the event. Participants found the information discussed useful, appreciating the frank discussion and the value of hearing other clients’ points of view.

Some service providers reported that the forum provided a valuable professional development opportunity and that they were now more confident in referring clients to other services (such as HALC).

The experiences of running these forums and the important feedback gathered highlights the challenges faced by Positive Life NSW, NAPWA (the National Association of People Living with HIV) and other support organisations in their ongoing efforts to engage with rural and regional populations.

Clearly different approaches are required to meet the needs of people with HIV in these regions. Positive Life NSW and partner organisations are considering a range of engagement options to address these issues.

Lance Feeney is Senior Project Officer – Systemic Advocacy at Positive Life NSW. Melissa Woodroffe is a solicitor at the HIV/AIDS Legal Centre.