Quality of Life for All
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 targets 95% for each of the three goals.
The rationale behind the 90-90-90 goals is based on the scientific evidence that people with undetectable viral load cannot sexually transmit HIV. By reducing the amount of time that passes between a person becoming HIV-positive and beginning treatment, we decrease their chances of passing on the virus. In this way, individual experiences of treatment can add up into a prevention strategy across the whole population. But it’s important that we consider quality of life as well as the quantitative goals for HIV prevention.
In our conversations about the goals, quality of life is sometimes described as ‘the fourth 90.’ But this treats quality of life as an afterthought. Instead, quality of life is the goal underpinning all the other goals. Even prevention — we aim to prevent transmission because a person who is HIV-negative does not have to overcome HIV-related challenges to their quality of life.
Quality goals could include:
- All people with HIV have a meaningful and supportive experience of diagnosis and are swiftly connected with peers.
- All people with HIV feel committed and supported to commence and stick with treatment.
- With appropriate care and support, all people with HIV can achieve good control of their viral load.
The focus on quality of life is part of the positive perspective that NAPWHA represents in all our work.
Defining quality of life
Health is an important part of quality of life, but quality of life is much broader than health.
As the Positive Perspectives 2 study reports, you can have undetectable viral load and feel satisfied with both your treatment regime and your 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 that matter to you
Quality of life 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 people and communities living with and affected by HIV.
As we work to achieve the 95-95-95 goals of the National HIV Strategy, focusing on quality of life helps us remember why prevention matters – we want to reduce the impact of HIV upon communities and individuals.
The focus on quality of life 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 (the rate of new diagnoses).
Quality of life is our primary goal
NAPWHA believes that quality of life is our primary goal, and we should target good quality of life for all people living with HIV. Quality of life is not the fourth target but the goal underpinning all our other goals. 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 people with HIV. Good quality of life 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 quality of life
Quality of life is not an abstract concept. It can be measured using tools like PozQOL, a questionnaire developed by researchers at the Australian Research Centre in Sex, Health and Society. This was developed in a close partnership with NAPWHA and its members — community organisations that represent people living with HIV. PozQOL can be used to measure quality of life (QOL) and monitor for changes over time.
The questionnaire has thirteen items. The answers range from ‘not at all’ to ‘extremely.’ 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 concerns |
| 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 |
| 4. I am enjoying life |
| 5. I feel in control of my life |
| 6. I am optimistic about my future |
| 7. I feel good about myself as a person |
| Social |
| 8. I feel that HIV limits my personal relationships |
| 9. I lack a sense of belonging with people around me |
| 10. I am afraid that people may reject me when they learn I have HIV |
| Functional |
| 11. I feel that HIV prevents me from doing as much as I would like |
| 12. Having HIV limits my opportunities in life |
| 13. Managing HIV wears me out |
The PozQOL questions can be included in surveys like Futures that monitor the experiences of people living with HIV in Australia. By tracing whether the average QOL goes up or down, we can evaluate the success of national strategies and local programs in promoting quality of life for all. A decreasing average does not mean failure — it may signal that we’re reaching new groups with different needs that we can prioritise in future work.
PozQOL can also be used in individual care and support. For example, when a person with HIV sees an HIV Peer Navigator, the PozQOL tool can be used to identify their needs and goals, and plan activities to meet them. Some questions can be used as prompts for further discussion, such as question 11 — we can follow up the answer by asking ‘what would you like to be doing?’
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.
Quality of life for all
Quality of life for all means nobody gets left behind. In this module we cover the basic concepts and skills needed to make this vision a reality.
- We look at the changing epidemiology of HIV in Australia and how this reveals groups with different and unmet needs.
- We introduce the health equity perspective that allows us to identify and address preventable differences in health.
- We show how quality of life depends on meeting biopsychosocial needs, not just HIV treatment.
- However, meeting needs means navigating complex systems of care and support!
- We describe a health literacy framework that can help us help our clients to navigate these systems.
- We discuss the new scientific consensus on HIV transmission and new HIV treatment approaches.
- Finally, we address sexual wellbeing, reproductive autonomy, and challenging HIV stigma.
The role of peer navigation in quality of life
HIV Peer Navigators are experts in helping people with HIV to make the most of all the services, supports and other opportunities available 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 service for advice on available services in case you want to refer one of your own clients.
Conclusion
Always remember that reducing HIV incidence and promoting HIV treatment 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.
Moving on
To continue to the next topic in this module, hit ‘Mark Complete’ below. To move back and forward, select a topic in the list in the left-hand column.