Quality of Life for All

Welcome to the Australian community-based response to HIV. We often call it ‘the sector.’ This module offers an introduction to HIV work for new HIV peer navigators and other colleagues working in peer and community-led programs.

You’re going to hear a lot about the Nineties. Not the 1990s, the decade of grunge and high-waisted pants. Rather, we mean the three nineties of the UNAIDS ‘Ending HIV’ strategy — also known as the ‘cascade.’

  • 90% of PLHIV are diagnosed
  • 90% are on HIV treatment and retained in care
  • 90% have undetectable viral load

The Ending HIV strategy has been adopted in Australia, and our Eighth National HIV Strategy actually targets 95% for each of the three goals.

There is clear and unmistakeable scientific evidence that when people with HIV are on effective HIV treatment and achieve a viral load under 200 copies (per 1ml blood sample), they cannot sexually transmit HIV.

So the cascade goals have a strong emphasis on finding everyone living with HIV, starting them on treatment and helping them achieve undetectable viral load as a way of eliminating HIV transmission and ending the HIV epidemic.

Quality of life is not an explicit part of the cascade, but it should be. It is often treated as an afterthought, being described as ‘the fourth 90.’

Instead, quality of life for all should be the foundation of our work in the Australian community-based response to HIV. This module focuses on quality of life first and foremost, so the module has a strong focus on understanding, anticipating and meeting health and social support needs.

‘For all’ brings in questions about health equity — who’s in the remaining 5% for each goal — so we talk about health equity and health literacy as well.

Defining quality of life (QOL)

Health is an important part of QOL, but QOL is much broader than health.

As the Positive Perspectives 2 study reports, you can have undetectable viral load and feel satisfied with your treatment regime and relationship with your doctor, but still report less than great quality of life and sexual wellbeing.

There are many definitions of quality of life, and the factors that make up good quality of life can vary widely from one person to another. But in broad terms, it covers:

  • satisfaction with life
  • sense of having meaning in life
  • being connected with others
  • being able to do things

QOL reflects the non-medical impact of HIV

In an earlier National HIV Strategy the goal was more general: not just reducing the incidence (rate of new infections) but reducing the impact of HIV on communities affected by the epidemic as well as people with HIV themselves.

As we work to achieve the 95-95-95 goals of the Eighth National Strategy, focusing on QOL helps us remember why prevention matters – we want to reduce the impact of HIV upon communities and individuals.

The QOL focus reminds us that people can be diagnosed, started on treatment, retained in care, reach undetectable, and still have lousy quality of life. The impact of HIV can be high even when we’re succeeding in lowering incidence.

QOL is our primary goal

We believe that QOL is the foundational goal, and we should target 100%. In other words, all people living with HIV achieve good quality of life regardless of their treatment outcomes.

Quality of life is not just for PLHIV. Good QOL is the reason for prevention. We want to prevent HIV transmission because we think it’s easier (less work) to achieve good quality of life when you don’t have to manage HIV as well.

Measuring QOL

There is an extensive debate over how to measure QOL in quantitative terms. (That means using numeric measurements that can be analysed statistically).

Luckily, there is a short, validated measure of QOL for people living with HIV. It doesn’t cover the unique factors that make up an individual person’s QOL. But it gives us a starting point for measuring QOL and monitoring for changes over time. It is often used in surveys to measure average QOL in groups, but it can also be used with individual clients as a planning and evaluation tool.

Health

  1. I worry about my health
  2. I worry about the impact of HIV on my health
  3. I fear the health effects of HIV as I get older

Psychological

  1. I am enjoying life
  2. I feel in control of my life
  3. I am optimistic about my future
  4. I feel good about myself as a person

Social

  1. I feel that HIV limits my personal relationships
  2. I lack a sense of belonging with people around me
  3. I am afraid that people may reject me when they learn I have HIV

Functional

  1. I feel that HIV prevents me from doing as much as I would like
  2. Having HIV limits my opportunities in life
  3. Managing HIV wears me out

For HIV Peer Navigators

HIV Peer Navigators use their lived experience, personal skills and workplace training to assist other people living with HIV to get the most out of the health and social supports available in complex local care systems.

It is goal-directed. It aims to help clients move along the care continuum — diagnosis, starting treatment, retention in care, undetectable viral load — and to achieve good quality of life, plus attaining their own personal goals.

Peer Navigation usually works with clients for a set number of sessions, e.g. 12 sessions per client. There is a focus on building the client’s skills to take ownership of their care, rather than providing care coordination for them. Some clients need ongoing support, which is usually provided as part of a care team.

For other HIV sector colleagues

Peer Navigators are the experts in making the most of all the services, supports and other opportunities to achieve good health and good quality of life.

In all your contacts with clients of your programs and services, we encourage you to listen for cues that a person could benefit from HIV Peer Navigation.

You can also contact an HIV Peer Navigation team for advice on available services in case you want to refer one of your own clients.

Conclusion

Always remember that reducing incidence does not automatically reduce the impact of the HIV epidemic and living with HIV. To do this, we need sustained focus on quality of life as the foundation for all our work together.