The leadership challenge
Leadership can ask a lot of people living with HIV, but it also comes in many forms. In this edition of Poslink, Living Positive Victoria's President, Craig Brennan writes about how the organisation is meeting the opportunities and challenges of the past few years. Contributors from NAPWHA show how community advocates have led a new approach to engaging with people living with HIV at a national level. We also hear about a new grassroots initiative inspiring African Australians to fight HIV stigma.
The artwork in this edition features Living Positive Victoria's new campaign, which explores the multitudes of ways that we are the experts in HIV.
We have the expertise
by Craig Brennan
The president of Living Positive Victoria describes his leadership style and some of the opportunities and challenges our community is currently facing.
Over the course of my adult life, HIV has been ever present. As a volunteer, as a care-giver, as an ally and as a person living with HIV, I have sought and found ways to contribute what I can.
I am a professional program manager, with years of experience in strategic planning and governance. My career has spanned many industries, giving me insight into how companies operate at all levels.
Working with the board at Thorne Harbour Health has given me a deep appreciation for the role boards play and how they are integral to the success of community organisations.
It is an extraordinary honour to have now taken on the role of President at Living Positive Victoria.
What is required of leadership at Living Positive Victoria evolves with the needs of our community.
The COVID-19 pandemic required us to rapidly adapt as we sought to find a balance between keeping safe and fostering the social connection that is vital for our community to thrive. As long-term trends in the epidemiology of HIV in Victoria shift it is also increasingly important for our representation, governance and service provision to continue to reflect the diversity of our community.
Elevating new voices only serves to enrich us as we remain committed to improving the health and wellbeing of all people living with HIV.
We have the expertise
Fortunately, our community already has much of the knowledge and expertise to meet these challenges and opportunities. To make the most of our community resources, it is crucial for leadership to listen and foster an environment that enables collaboration, inclusivity and transparency.
To collaborate successfully, leaders need to put their team's needs and priorities first. They actively seek out the best way of working with others while investing in success by giving credit where it is due. With a collaborative mindset we can work toward greater synergies that benefit all stakeholders and communities, so everyone has an equal opportunity at being heard
Listening well is an important skill for anyone who wants to have successful communication because it allows clear understanding and perspective taking. Trust, respect, openness all come from listening properly which in turn fosters collaboration and alignment
The mission of many organisations is to create a world where everyone feels included. While some may argue that we live in an inclusive society, it's clear from my experience working with diverse organisations and people across different backgrounds that this isn't always the case. It takes intentional effort on behalf of leaders who understand how critical diversity and inclusion are to progress. We must build pathways and structures that have diversity and inclusion at their heart. This can’t be left to chance.
When we promote transparency, it creates an environment where people feel valued and respected. Everyone should have the opportunity to voice concerns or disagree with decisions; this builds accountability because there's no hiding behind closed doors anymore. Transparency promotes healthy cultures by making sure that everyone knows what’s going on from start (or close enough) through finish.
At a Board level
Over the course of this year the board will oversee the creation of Living Positive Victoria’s next four-year strategic plan. To accomplish this, it is vital that we act with transparency and in collaboration with our member communities, our strategic partners, and the organisation to gather as wide a range of ideas and feedback as possible.
In order to create a more engaged and interactive strategic plan, we will be launching a series of targeted surveys, forums and workshops. These new communication channels will help drive feedback for the strategic plan and create new ways to connect on a more permanent basis.
As we come out of the era of lockdowns, Living Positive Victoria is committed to engaging with the membership as widely as possible. The board is equally committed to making ourselves available. As much as possible, board members will be participating in Living Positive Victoria events and forums. The board plans to open up working groups to wider participation and provide new opportunities for inclusive consultation.
Most recently, Living Positive Victoria has sought to strengthen its relationships with key strategic partners, entering into a new memorandum of understanding with the Centre of Ethnicity and Health (CEH) . We have also taken the first steps of developing a Reconciliation Action Plan. The engagement and knowledge sharing that we gain from these relationships and initiatives will inform the development of culturally appropriate services and representation as we extend our reach into Aboriginal and culturally diverse communities. The board is also currently re-designing its culturally and linguistically diverse (CALD) working group and looks forward sharing the opportunities that will create.
Connecting in a changed environment
The COVID pandemic required us to adapt how we provide support for each other. Much of our peer support and education services were delivered online, but this has still resulted in a delayed engagement for newly diagnosed people in the Victorian HIV positive community. Pandemic related stress and isolation has also increased the need for social support.
Two new workshops, Positive Reflections and Positive Relationships build on the foundations of our group-based peer education and support for the newly diagnosed. Two-hour long tailored workshops for heterosexual and same sex attracted people are available to provide more space for anyone who would like to explore issues such as sex, relationships and sharing and making meaning from your HIV journey. We also look forward to welcoming back members to our range of social events and support groups.
We have strongly felt the need for face-to-face social events, retreats and groups to resume and we welcome the return of members to connect at these opportunities.
One of the benefits of connecting online has been providing safe and easy access to peer education for people who cannot make it to our in-person events. This includes people who live in regional and remote areas as well as people who have differing access needs or higher risk of severe disease from COVID. The shorter formats of Positive Reflections and Positive Relationships can be readily delivered virtually for our members who benefit from increased access online. Our other services, including forums, peer navigation, Phoenix and the positive self-management program continue to be delivered in blended online and in-person formats as we navigate the return to large forums and events.
Other new areas of program development include our support for affiliated programs, such as Positive Latin American Network (Latinx Australia) and Positive Asian Network Australia (PANA), providing localised events and pathways for our membership to engage with these national networks of people living with HIV.
Craig Brennan was elected to be the president of Living Positive Victoria at the Annual General Meeting in October last year. He is truly honoured to take on this role at a very exciting time for the organisation.
The role of community advocates in health literacy
by Daniel Reeders and Saysana Sirimanotham
Community leaders were involved in every step of developing the National Association of People living with HIV's (NAPWHA) new approach to communicating about health issues.
It’s a familiar scenario: a patient turns up at the chemist with a script, but they have no idea what the medication is for. The pharmacist patiently explains. And still, taking medicines the wrong way regularly puts people in hospital — or worse.
Somewhere along the line, someone has failed to communicate effectively with the patient. The term health literacy was coined to explain these events.
In its original form, the concept of health literacy focused on the patient’s ability to take in health information and make decisions. But researchers quickly realised this was blaming the individual patient. Instead, we started asking questions. Why are health systems so complex? Why are health services so bad at communicating in plain language?
The HIV epidemic also demonstrated that clinicians are not the only source of health information and advice.
Communities affected by HIV demonstrated their ability to share complex health advice in simple and compelling ways.
Think: Vanessa Wagner and Nurse Nancy (pictured above), combining drag and comedy, and up-to-the-minute advice about living with HIV in community forums.
So, health literacy is not just an individual skill — it has community and systemic elements.
In 2019, NAPWHA launched the Health Literacy Framework project, which used this insight to revolutionise how our national organisation engages with communities and health issues.
The framework combines action learning with an ecological approach. As we engage with communities, we learn about their needs, goals, and priorities. We use what we learn to refine our approach and develop new interventions. And we share what we learn with the positive community, the HIV sector, the health system, and broader society.
The framework was developed by NAPWHA consultant, Ron Woods. It shows that we need to consider and develop health literacy at multiple levels, from the individual right up to society at large.
So, what does this mean in practice? We began with a list of communities that we wanted to engage with — so we could better understand their needs and experiences. This included positive women, heterosexual men, Indigenous people, culturally diverse PLHIV, and PLHIV who inject drugs.
We first piloted the approach with positive women. Positive women are highly diverse, and their members intersect with all the other groups we wanted to reach. Community advocates, who are central to the framework approach, were recruited and worked collaboratively with us to co-design ways to engage with networks of peers around Australia.
After the first pilot with positive women, the project broadened to other groups.
Community advocates convened interviews, discussion forums, and community group consultations to draw out a better understanding of the issues facing people living with HIV today. Based on their findings, we developed a set of interventions, which we carried out under the guidance of our community advocates. The community was involved at every step of the journey.
Following the initial pilot, a key outcome of the project has been the development of new NAPWHA networks. NAPWHA has for a long time auspiced the Positive Aboriginal and Torres Strait Islander Network (PATSIN) and a network for positive women. To these, we have added the Positive Asian Network Australia (PANA), HetMAN Australia, and the Positive Latin American Network (PLAN). If you are interested in finding out more or joining one of these networks, we would welcome your involvement!
The networks give us a better understanding of the changing needs, identities, and experiences of people in positive communities. We can take what we learn from these engagement activities and share our findings with the broader HIV sector.
The networks have fed crucial findings into the development of NAPWHA Learning initiatives. For instance, two online learning resources on the NAPWHA Learning platform: HIV 101 and HIV Peer Navigator modules. Four ‘virtual hugs’ video messages were created by community members to be viewed by people who may have just received a new diagnosis.
We included community advocates as panellists in the 2021 Quality of Life webinar series (watch: Anth above), and the insights they shared have informed the development of a forthcoming Australian Community Accord on Quality of Life for People with HIV, to be launched at the ‘Finding Joy’ virtual congress on Friday 13 May 2022.
None of this work would have been possible without the support of member organisations like Living Positive Victoria, and the participation of people living with HIV. It continues a long tradition of positive people and communities contributing their time and energy to build our capacity as an organisation and a sector. While the initial project is drawing to a close, NAPWHA is committed to using this approach in all our current and future work.
Daniel Reeders is the NAPWHA Learning project officer. Saysana Sirimanotham is the NAPWHA Health Literacy Framework project officer. More information about ‘Finding Joy’ - a virtual community event being held for people living with HIV in Australasia being held on Friday 13 May 2022 is available now on the NAPWHA webpage
Becoming a leader
Chrissie is a woman living with HIV who is inspiring African Australians to fight stigma
by Timothy Krulic
“I know what it is like to be embarrassed of living with HIV and surrounded by all of that stigma” Chrissie told me when we were introduced last month. “I just couldn’t open up.”
It’s a common experience for women living with HIV from African heritage in Australia, made all the more clear to Chrissie when she realised a colleague was going through the exact same thing last year.
“They cannot share their story. They didn’t want anyone to know. But at the same time when we are not sharing, others do not know about HIV.”
Christabel or Chrissie, as everyone calls her, came to Melbourne in 2009 from a small mining town called Hwange in Zimbabwe. She is a mother of two and since completing her social work degree, she has worked in disability and family violence support and prevention.
Chrissie is also living with HIV, and has recently discovered that she can be a fierce advocate when confronted with ignorance and stigma.
“I realised that people from my culture didn’t know the difference between HIV and AIDS. When they are talking about someone living with HIV they say, ‘oh they have AIDS.’”
Hearing things like that made Chrissie want to educate people about living with HIV. “People with HIV are human. It’s not that they have been promiscuous. There are a lot of myths.” Originally, she started connecting people to resources. Last year, she started a Facebook page.
Since May 2021, Stop HIV Stigma has attracted over 2, 300 followers. Regular posts aiming to educate and dispel common myths about HIV received hundreds of likes, comments and shares.
One of the things that motivated Chrissie to create Stop HIV Stigma was seeing gossip posted in online groups for women from her community. She remembers one comment which read, “don’t date that guy, he has AIDS.” Having been in a similar situation, the comment hit her personally. “People may not understand how upsetting it is for people living with HIV to see posts like that. They have told you that in confidence.”
Although it is stigma that enables this kind of behaviour, the experience also made Chrissie realise that part of the problem is that many people have little or no knowledge about HIV.
Stop HIV Stigma shares short posts containing easy to understand and up-to-date information about living with HIV. Basic information addresses persistent myths. One popular post reads, “HIV is a virus and AIDS is a condition. Today many HIV positive people who get started quickly on ART live a normal long productive life like people who are HIV negative. Not everyone who has HIV will get AIDS.” More recent treatment advances, such as treatment as prevention (U=U), PrEP and the safety of COVID-19 vaccines are also promoted.
It was important to Chrissie for the page to target everyone in the community. Peer support groups, like those run by Living Positive Victoria or online networks like The Institute of Many (TIM) provide a safe space for people living with HIV to connect and support each other. Following or liking Stop HIV Stigma does not identify you as HIV positive. Chrissie’s hope is that as a public group, Stop HIV Stigma builds a supportive network around people living with HIV that includes their HIV negative friends and family. Having a page that is open to everybody breaks the stigma and “helps people living with HIV to understand that they are not alone,” she said.
Towards this aim several posts provide guidance about how to address HIV stigma and support friends, colleagues and loved ones living with HIV.
“Sharing your story and listening to someone else’s story can lighten the burden. Showing empathy and understanding helps create change for yourself and your friends” reads one post inviting followers to start conversations about HIV.
“If you hear people referring to someone who is HIV positive as having AIDS, correct them. Educate them.”
While Chrissie was inspired to start the page because of the low level of awareness she saw within her own community, it is also clear to her that misconceptions about HIV persist at a wider level. Experiences she has had as a woman living with HIV, both in healthcare settings during the pregnancy of her second daughter and the responses of her white friends when she has told them about her HIV status have shown her that many people in Australia still think that HIV will make you sick or unwell.
The positive response the page has received from African Australians gives Chrissie hope that many more people across Australia and internationally will join the group. Since starting the page she has received messages of support from people all over the world as well as people sharing their own stories in comments and posts.
The journey of creating the page for Chrissie has also been one of conquering her own fears. “When I started the group, I was really scared.” Having dealt with stigma in the past, she did not know what kind of response she would get speaking to the whole of the community, including HIV negative people.
Since then, many people living with HIV have come to Chrissie for support. She remembers one woman who messaged her who felt desperately isolated by her diagnosis. “She is terrified to share her HIV status with her family because she constantly hears her family talking about HIV in a very negative way.” One thing she wants people to know is that if you say something stigmatising about HIV there is a good chance someone you know, a friend or family member living with HIV, might hear it even if you don’t know that they are positive.
Chrissie hopes that by finding more confidence in herself and being a face for people living with HIV in her community that it will make people think twice about spreading stigma as well as inspire other people living with HIV and help them to know they are not alone.
Chrissie is a mother of two and has been living with HIV for 22 years. You can find out more and follow Stop HIV Stigma here.
ISSN 1448-7764
Credits:
Created with an image by Goar - "Cotton fabric texture with african print, batik design"