By Vic Perri, Health Promotion Officer, Living Positive Victoria.

‘Across the Ages’ 2017. A conversation between younger and older people with HIV.

In ‘Across the Ages’, Video 1 above, Sam Cohen recounts his experience on being diagnosed with HIV in 1984 in which he reflects the thoughts and experiences of so many others living with HIV. Sadly, Sam passed away in late 2021. The full video can be accessed here – https://www.youtube.com/watch?v=DyVPnaGsfQE&t=1s

In a recent HIV Australia essay ‘Ageing well, and in good company’, Jae Condon described a range of issues that older people with HIV must deal with. These include medical issues such as inflammation and dementia as well as mental health and social issues such as housing. We are very fortunate in Australia to have quality services to address these issues. In this essay I will describe some of the ways that Living Positive Victoria is building capacity in older people with HIV. Our programs enable older people with HIV to develop life skills and health literacy and give them an opportunity to make stronger connections with peers. This support empowers them to attain agency and an enhanced quality of life.

Partnership

The Taking Charge project is a partnership between Living Positive Victoria and Thorne Harbour Health and focuses on older people with HIV. It is coordinated and facilitated by myself and Gerry O’Brien of Thorne Harbour Health, both of us over 50 and living with HIV.​

Health Literacy

Vic Perri delivering information rich workshops.

Through this project, Pic 1 above, we deliver health promotion information sessions and workshops presented by a combination of HIV sector health professionals, non-sector experts and HIV-positive peers. The aim here is to increase health literacy which is achieved not only from the health information presented but also through the sharing and discussion between participants with their many years of lived experience. ​

Peer Connection

Developing strong peer support over coffee and conversations.

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Connections to peers and a peer community is enhanced through group activities.

Peer support and connections to the HIV community, pics 2 and 3 above, that address social isolation are also developed through social activities such as picnics, mini golf, visits to various art galleries and museums as well as train trips to regional cities such as Geelong and Bendigo.​

Capacity Building

The evidence-based six-week Positive Self-Management Program gives participants an opportunity to use various tools and develop skills that enable them to self-manage not only their HIV but many other aspects in their lives.​ The program is delivered in person by HIV-positive peers in Victoria, as well as online nationally and in partnership with the Bobby Goldsmith Foundation.

Among the many tools learnt in the program, the program emphasises the importance of treatments and goes through interactive exercises in the form of brainstorms where participants develop a list of practical tips on how to adhere to treatments.

In another session in the program, we explore the many parts to a successful relationship with our health professionals.​ We go through practical steps to make the most of their time with their healthcare provider, so people feel more empowered and make their visits more productive.

The numbers

Our Peer Support Network has 180 members from diverse genders, sexualities and cultural backgrounds and ages above 50. Since 2017 we’ve had 50 events each with an average of 6 attendees. The numbers and participants vary depending on the activity. We’ve also conducted 8 positive Self-Management Programs, 4 in person, 4 online with 43 people having participated. ​

Peers Connecting Internationally

Locals sharing their experiences with peers internationally

Another aspect of Taking Charge as shown in Pic 4, gives our members an opportunity to connect with international peers and participate in events such as the International HIV Long Term Survivors Awareness Day.

In 2022, and in partnership with The San Francisco based International Long-Term Survivors Network and the Kuala Lumpur AIDS Support Services Society, the Taking Charge Project organise an international video link to mark the Day. ​ The conversation was rich with a range of diverse personal experiences as well as comparisons between the different epidemics in Australia, U.S. and Malaysia. The video can be seen here – https://www.youtube.com/watch?v=Yasq_kBro-I

Who Wants a Cure?

Cure

Our members can also participate in current and important discussions such as cure. ​For an online session in early 2023, we invited Brent Clifton of NAPWHA and Craig Burnett from the HIV Cure Consortium to kick off a discussion on cure. They gave us some background and details of where we’re at with cure from a community and clinical perspective. ​The discussion gave older PLHIV an opportunity to talk about where they see themselves in the process. The video can be seen here – ​https://youtu.be/_9cFFeV_aBg?si=NLZroSuZOGiBoMkW

One Stop Shop

‘Well Beyond 50’ is an online community hub where older people with HIV can access health information, articles, connect to the various support and services and watch videos of their peers telling their stories.

The website features videos which showcase some fascinating insights into the experiences of older people with HIV. They not only describe their personal journeys but also the potentially challenging intersections with healthcare including aged care. Speakers demonstrate their resilience in how they deal with life’s hurdles. Check out Well Beyond 50.

A successful project

Recognising the challenges in the context of people’s lives relating and even those not relating to HIV, as well as the natural limitations of the program itself, we can still observe an increase in scores in most areas in our pre- and 3-month post- group evaluations using the PozQoL scale.​

What do the punters say? These are just a few salient examples of the many comments about the project.​

• “This group enables me to engage in light social activities where I would normally not, due to my disabilities.”​

• “These types of outings are very beneficial for those living alone and without a lot of social contact.”​

• “Every meet up, with whatever crowd is there is a great experience. Have a laugh, a chat, forget what you have and enjoy the experience. Made us feel very welcome and looked after us, thank you”  ​

• “I feel more confident with information that is being given by a qualified medical expert. There is so much being said by unqualified people these days on many subjects, that one doesn’t know what is true and what isn’t”​

Let’s hear from Nigel in video 2 share his thoughts about the Positive Self-Management Program.

Nigel shares his thoughts about the Positive Self-Management Program.

For more information on upcoming Taking Charge activities visit the Living Positive Victoria website events page

What can I do next?

After participating in the Taking Charge program many people are hungry for more knowledge and experience.  Many participants go on to connect with other Living Positive Victoria workshops such as the Phoenix Workshop for newly diagnosed people, Positive Reflections where participants can reflect on their positive diagnosis, Sharing Your HIV Status where participants explore the challenges of disclosure. Others participate in social events such as Adults Retreat for heterosexually identifying people and Planet Positive which is a social function welcoming all PLHIV and their supporters. Details of these events can be found on the Living Positive Victoria website events page

They also develop a keen sense of community and a desire to contribute. Having recognised the added value to their health and wellbeing from their participation, they wish to pass on their years of knowledge and experience. A great way to do this then is to volunteer in the Positive Speakers Bureau, becoming a peer facilitator and contributing to the Well Beyond 50 website.​ To register your interest in volunteering for Living Positive Victoria – https://livingpositivevictoria.org.au/get-involved/become-a-volunteer/

I’d like to note that this continuing involvement of older PLHIV in activities is not only beneficial for their own overall health and wellbeing but also beneficial for younger PLHIV in those activities where informal mentoring can happen through the productive intergenerational conversations. ​

For Health Professionals

So how can health professionals in Victoria know about us and our programs? As can be viewed in Video 4 below, Living Positive Victoria was part of an ASHM national working group to help develop an online module for s100 prescribers and other health professionals with older clients and so we came up with this video introduction.

​Vic and the Peer Navigation team describe the support for older people with HIV

​Older people with HIV are still here and still contributing.

Resilience

We are resilient and we can share how we have learnt to overcome and bounce back from a diagnosis that for many meant a near certainty of illness and death. While many have survived the tough early years of the epidemic, there are still many challenges, our resilience is being tested time and time again.

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Mentoring

We can be generous with our time and are happy to share and mentor using the strategies that we developed to overcome the many challenges that have been thrown at us over the years.​

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Perspective

We have a broad perspective that has come with many years of experience with not only HIV but life in general.​ This can be useful to younger people and those who are newly diagnosed.

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Humour

And what really keeps us going is a that we have a great sense of humour. Despite the deep psychological trauma that many of us have had to deal over the years, to deal with these real lows in our life, we know that there are times where you just need to have a laugh at life and yourself. Sam Cohen, our friend in Video 1, was a classic example of how to combine humour and other characteristics and at the ripe old age of 65 as he was still making a positive contribution to the HIV community.   ​

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All we ask for in exchange is to be treated with dignity and respect and to be included in the conversation particularly as we enter an exciting new era in the elimination of HIV transmission as seen as a public health issue and the reduction of stigma.

Acknowledgement

Thanks to Tom Herbert, Digital Content Creator, Living Positive Victoria for pics 9-12.

Author details

Vic has been living with HIV for 35 years and has worked in HIV Health Promotion and Peer Support for 27 of those years. He is currently a Health Promotion Officer at Living Positive Victoria and provides general information and guidance on the management of HIV that includes peer support, treatments as well as education and training. For more information, https://www.linkedin.com/in/vic-perri-836461a8/

Published: January 2024