Our Country Practice: effective service delivery with people living with HIV in rural areas

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

SUZI QUIXLEY profiles a weekend retreat for HIV-positive people in South Australia, highlighting key insights learnt along the way.

What distinguishes good practice when working with people living with HIV in rural areas compared with working with people in urban areas? This article is designed to provide a practical guide for HIV workers with limited experience of rural service provision.

In June 2012, Positive Life SA (PLSA) ran Rural.Life+ – a weekend retreat for rural positive people which brought together participants from throughout South Australia (SA). This article explores the processes we used to plan the event, what we learned, what we would do differently next time and how the issues raised by rural people living with HIV are informing our ongoing practice.

A ‘rural friendly’ approach to the practicalities

Two PLSA staff have previous experience of service provision with rural men who have sex with men (MSM)/gay men and rural young people which informed our approach to planning Rural.Life+.

Rural.Life+ was run in Adelaide, rather than in a regional city. HIV-positive people told us that they preferred the event to be held in Adelaide for two reasons: because of the social attractions of a weekend in the city, and because it reduced the risk of being seen by someone from their local communityand being ‘outed’.

We timed the weekend to align with PLSA’s quarterly social event, Planet Positive, to enable participants to meet a wider group of positive people.

Most rural positive people on HIV treatments are required to come to Adelaide every three months to access their s100 prescriber.

People living some distance from Adelaide cannot complete their travel and medical appointments in a single day. They must choose between paying an airfare, or taking another day or two to drive and paying for accommodation.

Most participants routinely bear these additional costs not borne by urban people living with HIV. These trips also raise privacy concerns, with employers and others wondering why the person takes such regular Adelaide trips.

Accordingly, PLSA chose to cover all the costs¹ associated with participation in Rural.Life+. This also included paying for partners’ travel and oncosts,which we saw as a matter of equity.

In practice, only one participant wanted to bring their partner – most saw the weekend as an opportunity to have a mini-break away on their own, to meet some of their own needs.

PLSA purchased state-wide rural newspaper coverage² to try to engage with HIV-positive people not currently involved with PLSA. Two new peoplecontacted us as a result.

Existing members also reported having seen the ads, and felt that these may have contributed to raising HIV awareness in local communities.

Very early in the planning process we engaged with the accommodation/ venue management and visited the site to build a relationship which would allow us to negotiate appropriateprivacy arrangements.

As a result, reception staff were only given first names of the participants, and PLSA took responsibility for all potential damage liability so that people could remain anonymous and wouldn’t need to give out their personal contact or credit card details. This allowed us to reassure participants about measures to protect their privacy.

The central role of individual contact

PLSA individually contacted all (36) rural members to promote the event and personally invite them to attend Rural.Life+. While this took a lot of time, it was well worth the effort.

This individual contact increased the number of people who attended. Ultimately, only one person (with existing attachment to PLSA) registered for the event without an individual conversation.

A surprising number of participants said ‘But I can’t afford accommodation’, or similar. This was despite the fact that all Rural.Life+ promotional materials emphasised that participation was free of charge – with meals, accommodationand travel all covered.

An informed guess is that four or five of the participants may not have registered on the basis of perceived cost alone, had we not made a personal phone call.

It is much harder to maintain your privacy in a country town than in the city. Many rural HIV-positive people are even more protective of their privacy than their urban counterparts.

Most potential participants expressed anxiety, asking things like ‘Is anyone else coming from … ?’ Several were concerned about the possibility that someone might come from their town, city or region when they were unaware of any other positive people living near them. Some were relieved to find that no-one from their immediate vicinityhad registered.

Another common question from potential participants was ‘Is it only for gay men?’ It was important to keep all interested people individually up-todate with the gender and sexuality mix of the group, so they could make their own decision about whether or not to attend.

Ultimately, no-one withdrew their registration due to the mix – eight of the men identified as gay or MSM, and one as straight – however, it was important that they felt they had a genuine right to change their mind about attending at any time.

During the weekend, all participants consistently reported that being part of a ‘mixed sexuality’ group was not a problem. Most country HIV-positive people have mainly straight local friends, and those who are ‘out’ access most of their support from straight friends.

Many potential participants indicated some scepticism about the value of the weekend for them – particularly those who were relatively healthy, working and leading active lives. They responded best to information about the topics to be covered – particularly the opportunity to access new and relevant information on HIV treatments.

We also mentioned the social and emotional benefits of connecting with other rural HIV-positive people – in a relaxed, peer-based (rather than a therapeutic) setting.

Others told us they were unable to attend Rural.Life+ due to other commitments. We took an attitude of optimum possible flexibility about people’s attendance and spent a lot of time negotiating around individual needs. Often this involved identifying the parts of the program which were core to the event and the parts that were less central (both for the group as a whole or particular individuals).

We also talked about how ‘coming and going’ affects overall group culture and interaction. In the end, most participants rearranged their plans in order to participate in the whole program. Those who could not do this were very respectful in the way they moved in and out of the group. PLSA also adjusted practical arrangements (such as paying petrol for three trips in lieu of accommodation, for someone from the near country who needed to check their animals daily).

Who participated in Rural.Life+?

A lot of thought went into how far to involve partners of HIV-positive people. It was ultimately decided to open the workshop itself to positive people only.

Partners were welcome to dinner each night and Planet Positive on the Friday night. We also offered the option of a daytime activity for partners to get together, however this was not needed.

We found that a residential weekend away with other HIV-positive people is not attractive to all rural people living with HIV. In fact, 16 of the 36 eligible people in SA would probably not attend an event such as Rural.Life+.

Of these people, seven clearly stated that they were unlikely to be interested (now or in the future), and a further nine people did not respond to our attempts to make personal contact.

On the other hand, 11 people registered for Rural.Life+ (with two having to withdraw due to work commitments).

A further four people demonstrated strong interest in attending, but were unable to attend on that particular weekend due to work, social or family commitments. The remaining five people were mildly interested. Ultimately nine men participated in the weekend.

What we did well … and what we’d do differently next time

‘A really fantastic weekend. I left it buzzing and feeling totally alive. It was great to be among others with similar experiences.’

‘Very informative weekend … I think we all came away feeling a lot better about ourselves.’

‘I found the weekend to be informative, diverse, friendly and helpful in sharing issues relating to being vulnerable and isolated in rural communities. We listened, we laughed, we talked a lot, and we left feeling good about ourselves.’

‘Thanx for a fabulous weekend, so rewarding and beneficial, met so many nice friendly poz guys.’

These were typical comments from Rural.Life+ participants – in fact, no negative comments were received about the whole event!

So what made this weekend so effective? In addition to the preparation detailed above, five elements stand out from the participant feedback:

The majority of workshop time was allocated to discussion – of the realities of living with HIV; issues with accessing medical and support services; and the social realities of HIV disclosure in country areas.
Low intervention, flexible facilitation was used to keep people on track, whilst not undermining the opportunity for conversations to ‘take on a life of their own’.
The program was adjusted in response to the priorities and needs of the group.
Input was scheduled on only two topics – updates on the latest HIV treatments information, and the legalities of HIV disclosure (by the national HIV/AIDS Legal Centre [HALC]).
Evening social activities were integral to the program rather than an ‘add on’.

Participants were evenly divided on which aspect of the program they found most valuable – the discussion time, input or social events.

Participants also responded well to the fact that the program finished with (late) Sunday lunch. This allowed sufficient travel time for people to arrive home by early evening.

The program was adjusted in situ in response to participants’ social needs. With limited opportunities to come to Adelaide, several participants needed shopping time.

Others found the Saturday (9–5) program too intense and needed a break. We extended Saturday lunch, with participants free to either go off alone or attend an exhibition of art by positive people in a nearby Adelaide café. Participants returned refreshed and happy to continue until 6pm.

Next time, we’d plan a socially-oriented break in the middle of the Saturday. We would also finalise the date of the weekend and promote this much earlier.

Several people were very keen to attend the event, but had pre-existing commitments. Six months’ notice of a ‘diary date’ may have increased the number of Rural.Life+ participants by four to six people.

Responding to the issues raised by rural PLHIV

Participant discussion at Rural.Life+ has already impacted PLSA activities, and will guide our service provision into the future.

At the workshop itself, it was clear that rural HIV-positive people are often unaware of Adelaide-based services, or simply assume that these will be irrelevant to them.

PLSA has invested significant resources into our online presence (website, closed Facebook group for positive gay men, and blog), to try to optimise our connection with members and other rural people living with HIV.

The weekend provided a useful opportunity to promote existing services which are genuinely relevant to rural positive people.

A key issue that emerged was access to medical and social services. Participants talked about pressure from medical specialists to move to the city.

Whilst no HIV-specific services exist in country areas of SA, participants exchanged resources that they’d found helpful (for example, travel assistance and Medicare-funded chronic disease provisions), and several had found a local GP who was keen to treat them and learn more about HIV.

Few people were aware of Medicarefunded allied health services available to people with chronic diseases through GPs.

Immediately following the workshop, PLSA researched these options and developed a plain English Info Update of the available schemes, which increase the likelihood of rural people living with HIV being able to access allied health, mental health and (then available) dental services in their local region, reducing their need to come to Adelaide for non-HIV specific services.

We also compiled an Info Update on support services, including HIV-interested mental health practitioners in rural areas and phone/ online counselling options.

HIV treatment protocols, medical information and peer-based information about the impact of particular treatments are constantly changing.

Participants showed particular interest in a number of treatments-related topics. As a result, PLSA wrote and published several articles for our newsletter Positively Talking.

Participants were almost equally divided between those who had disclosed and those who had not disclosed their HIV status to others in their local community. Several recounted positive experiences of ‘coming out as positive’ in rural settings, and felt that they received higher levels of support than they would in a capital city.

At the other extreme, several people felt very isolated. They were very secretive about their HIV status and were sure that coming out locally would have serious detrimental consequences.

All were interested in better understanding the legalities of HIV disclosure. Participant feedback will inform a guide on HIV disclosure and the law in South Australia currently being produced by the HIV/AIDS Legal Centre (HALC).

Into the future, PLSA is committed to addressing community services and health industry workforce issues affecting rural people living with HIV.

We aim to improve the cultural competence of HIV services to respond appropriately to positive people living in rural areas and educate GPs about issues affecting HIV-positive patients. (Several rural GPs have inadvertently ‘outed’ people in their local community through making comments in the waiting room or enabling receptionists to access sensitive information.)

Subject to funding, we plan to develop a resource for rural GPs entitled If you have an HIV+ patient …, and provide training for country health professionals.

Finally, within PLSA, we will endeavour to provide earlier notice of ‘diary dates’. This will allow rural people living with HIV to align their quarterly medical trips to Adelaide with opportunities to participate in peer-driven events.

For more information contact Suzi Quixley at Positive Life SA, (08) 8293 3700 or healthpromotion1@ hivsa.org.au

Endnotes

1 Covering all meals, shared apartment accommodation, travel and parking for 20 participants and their partners would cost between $10,000–$15,000.

2 This cost $4,000 for a single advertisement published once.

Suzi Quixley is Health Promotion Officer at Positive Life SA.