The Ankali Project is situated on land traditionally owned by the Gadigal people of Eora nation. We support and respect the survival of this proud culture and are committed to improving Aboriginal health. The name ‘Ankali’ is believed to be a South Australian Aboriginal word for ‘friend’. The original Ankali Project team selected the name from a list of words provided to them by the Aboriginal Medical Service in 1985.
Based in Sydney and part of the Albion Centre and South East Sydney Local Health District, the Ankali Project is a NSW Health, Population and Community Health service. The vision is to support people living with HIV (PWHIV) by fostering meaningful and supportive relationships with trained volunteers. These relationships provide emotional and social support to reduce isolation and loneliness in clients’ lives.
The Ankali Project is a community of clients and volunteers. Clients are adults impacted by HIV, and living with loneliness, and/or social isolation. They can access Ankali Project support by referral through other services and staff, or by self-referral. Clients are required to be contactable, reliable with making and keeping appointments, and interested in engaging with a volunteer for emotional and social support for a minimum of 6 months. Volunteers are adults from diverse backgrounds and experiences, all collectively recognised by their care and kindness. Volunteers are required to participate in training and ongoing supervision, be reliable with making and keeping appointments, and motivated to offer emotional and social support to a client for a minimum of 6 months.
(Photo: the original three team members, from the left: Psychologist Jim Dykes, Clinical Nurse Specialist Lou McCallum, Social Worker Jenny Watts)
Established in 1985 by Jim Dykes, the Ankali Project initially responded to people living with an AIDS-defining illness. The service was modelled on an American NGO that was based in San Francisco, ‘the Shanti Project’. Jim Dykes acquired funds from the Bobby Goldsmith Foundation and visited the Shanti Project to attend their volunteer training. He adapted the model of care and volunteer training for the Australian context. In those earlier years of the 1980s and the 90s, volunteers were present for clients while they were in hospices, or at the end of their life at home. Since then, developments in treatment, testing, and prevention have managed HIV from being a fatal condition, to a chronic manageable condition for people with access to antiretroviral therapy (ART). As PWHIV live longer, healthier lives, we’ve sometimes heard the question about whether there’s still a need for the Ankali Project. We say yes – PWHIV and their needs do not cease to exist.
Chronic social isolation and loneliness for PWHIV is our special interest at the Ankali Project, given the prevalence of these experiences and the issues associated with them. In Australia, and globally, social isolation and loneliness are increasingly considered significant health issues because of their detrimental impact on mental and physical health outcomes. Social isolation is a well-known risk factor for conditions including depression, substance use, cognitive impairment, heart disease and mortality. Loneliness has a clear impact on levels of psychological distress, life satisfaction and can lead to premature death for the general population.
It is well established that PWHIV experience heightened levels of social isolation as a consequence of stigmatisation. Resulting experiences of PWHIV report prejudice due to societal perceptions of HIV as being different. This is despite significant medical advances and research toward U = U where there is zero chance of transmission. A HIV Futures 9 study showed that more than 50% of participants experienced at least one encounter of HIV-related stigma or discrimination in the previous 12 months, and 38% reported that they had been treated differently because of their status (Power et al 2019 in Centre for Population Health 2021). The NSW HIV Strategy 2021-2025 emphasised stigma and presents it as a standalone priority action because of its pervasive impact” (NSW Ministry of Health 2021).
Stigma has an effect on people’s lives, causing people to withdraw socially, experience loneliness, and/or poor mental health. These effects are intersectional, compounded by unique challenges experienced by people from age, gender, geographic, and cultural subgroups. For example, isolation and loneliness is compounded for older PWHIV who can experience intersecting stigmas of ageism and HIV stigma, and grief with historical HIV-related deaths in their communities. Women with HIV experience unique challenges due to associations with sex work, drug use, and associations with promiscuity and poor lifestyle choices. PWHIV in rural and regional communities also have additional stigmas with geographic isolation, lack of representation, and being outside of the norm of ‘rural culture’. People from Culturally and Linguistically Diverse (CALD) communities experience compounded stressors due to different cultural understandings of HIV, HIV related stigma, and resettlement issues. These compounding stressors exist for people in different subgroups but social isolation and loneliness do not solely target a particular age group, gender, culture, or a particular geographic location. Chronic social isolation and loneliness can and do exist for people of any background.
All things considered, addressing endemic loneliness and social isolation within the community of PWHIV presents a considerable public health challenge. Acknowledging and reducing stigma and discrimination are key to reducing social isolation and loneliness. A range of initiatives are needed to address the different ways in which loneliness impacts an individual including policy, health care worker training, health promotion, and using a person-centered approach to design and implementation of services. Access to mental health resources and housing has been found to reduce the worst effects of social isolation and loneliness. Stable work, social groups, peer groups, volunteering and caring for others have all been found to be helpful in encouraging skills, strategies, and opportunities for connecting with others and sharing experiences.
The work of the Ankali Project and its volunteers is to be present for PWHIV that experience isolation, and loneliness. Jim Dykes summarised the volunteer role and reflected: ‘The Ankali person is the one person, maybe the only person, in that man or woman’s life who is saying “I don’t know. I have no advice for you. I’ll be here. I’ll listen to you. I’ll hold you. I’ll do anything except tell you what to do.”’
(Photo: An Ankali client and volunteer catching up at the park)
Since its inception, the Ankali Project have trained and supported more than 2500 volunteers who have supported more than 2500 clients living with HIV/AIDS. Each year, volunteers contribute thousands of hours of support to clients, and to their support groups. Volunteers are contingent workers with NSW Health. They are required to attend a three-day training, attend ongoing volunteer supervision meetings, and adhere to NSW Health policies which includes following the Code of Conduct. Volunteers are ‘matched’ with a client and make a commitment to connecting with a client for 2-10 hours per fortnight, depending on the availability of the volunteer and the needs of the client. In offering emotional support, volunteers actively listen and offer encouragement rather than problem solving or providing advice.
(Photo: Ankali volunteers in a training environment)
The Ankali Project has delivered 113 volunteer training courses since 1985. The training is designed to provide volunteers with a solid understanding of the role, and how they will be supported. The training program is a mix of didactic sessions, role plays, panels and listening to people with a lived experience (through a collaboration with Positive Life’s Positive Speakers’ Bureau).
Volunteers’ feedback from recent training cycles:
- “The training process was thoughtfully planned. It was engaging on different levels. Well done!”
- “This was a priceless opportunity to learn (beyond training content) about behaviours, values, and shared experiences that make the Ankali tribe. An amazing process to form ‘belong’. Thank you!”
- “Fantastic and in-depth programs over three days that were incapsulated with empathy, sensitivity and copious amounts of kindness!!!”
(Photo: Ankali volunteer support groups are integral to the success of the support model).
After graduating from volunteer training, volunteers join volunteer support groups. These volunteer support groups are integral to the Ankali Project model of providing support and supervision for volunteers. These groups meet each fortnight and run for an hour. Volunteers attend their group to share information about the time and quality of their client interactions. Volunteer support groups are facilitated by trained volunteer group leaders and Ankali Project staff.
At the Ankali Project, clients connect with volunteers to receive social and emotional support in our integrated model of including psychosocial care in health, and with volunteers. We value health beyond a person’s status, their viral load, and their medications. That is, we value emotional, mental, and social health, for example confidence, self-esteem, and ability to attend activities/events, or pursue hobbies, studies and careers.
(Photo: Ankali volunteer and Ankali client catching up over coffee)
Comments from clients and colleagues about Ankali support:
- “She (my volunteer) is a precious soul, she is like a soothing balm on my life, she is a very humble person – we have a spiritual connection, she really understands me, she only sees the good in me, and points these out to me”. – Client
- “My volunteer is as important to my emotional wellbeing as my GP is important to my physical health”. – Client
- “I’m so glad I met my volunteer. We just joke and laugh, and I get to forget that I’m separate from everyone because I’m gay, or positive, or recovering.” – Client
- “His charming effervescent personality dispels my gloom, chasing the Black Dog away for the day. He has helped me to feel that; thanks to his persistent weekly calls and outings over the last half a decade and more.” – Client
- “The work the volunteers do is invaluable to our clients. The volunteers can do things with and for our clients and share things that the rest of us can’t, which is to show them that they belong and are cared for” – Colleague
The Ankali Project continues to support people affected by HIV and work on reducing social isolation and loneliness. We can be contacted by email ankali@thealbioncenre.org.au or during business hours by telephone 93329742