A National survey of people living with HIV

This is a survey about quality of life among people living with HIV (PLHIV) in Australia. We take a broad approach to quality of life, including consideration of health and wellbeing, financial and housing security, treatment and clinical care, relationships and social support and access to community services.

Please complete this survey if you are a person living with HIV, currently living in Australia and aged over 18 years.

We are keen to hear from all people (cis and trans) living with HIV, including women, heterosexual men, and gay and bisexual men. We are also keen to include a diverse range of experiences and encourage people from culturally and linguistically diverse backgrounds to take part.

All questions are voluntary, so just skip over any you do not wish to answer. We will also accept partially completed surveys, so just complete as much as you can. We still value your participation.

The online survey has a password option so you can take a break at any time and finish the survey later.

The survey deadline has been extended, and will be open until May 2022.

Tell your friends

If you know of anyone else who might be able to complete the survey, please tell them about this study. The more people who answer the survey, the more useful the results will be.

Participant information statement

If you wish to print a copy of the following Participant Information please select the text below and click print or email hivfutures@latrobe.edu.au and we can send you a copy.

How long will the survey take?

For most people the survey will take between 30 and 45 minutes to complete. We know this is a long survey and appreciate the time you are taking to complete it. You may prefer to take a break between sections of the survey. Please see below for information about how to save your answers.

Please complete as much as you can. If you have filled in some answers but do not wish to complete the whole survey please go to the last page and click submit.

Your answers are still valuable to us, and will be used for the study, even if you don’t answer all the questions.

How do I fill in the survey?

If you would prefer to complete this survey using a booklet (hard copy), please contact us by calling 1800 064 398 or e-mailing hivfutures@latrobe.edu.au. We will send you a hardcopy that can be returned via an anonymous, reply-paid envelope (supplied).

To answer each question either click a button or select an answer from the drop-down menu provided.

If the answer that you want to give is not provided, select ‘Other’ and type in your response.

In some cases, you will be asked to type your responses in a box. Just click on the box and type.

Remember if there are any questions you do not wish to answer, just skip them.

To submit your answers, click on ‘Submit Answers’ on the final page.

Can I save my answers and come back to the survey later?


If you wish to take a break from the survey and continue at another time, click on the ‘SAVE & RETURN LATER’ link at the bottom of the page.

You will be given a security code. You will need this code to open your saved questions, so you should write this down.

You must remember your security code as we cannot retrieve it for you!

To open saved answers, click on ‘Returning?’ at the top of the survey page, then click on ‘Continue the survey’ and fill in your security code.

You can save your answers as many times as you wish to. Each time you save you will receive a new security code.

Please note, once you exit the survey, you will not be able to open it without the security code. This means that two or more people can use the same computer to complete the survey and will not have access to each others’ answers. You can also use public computers, and can access your answers on more than one computer, as they are not saved on the computer’s hard drive.

Can I see a copy of my answers or have my answers excluded after I press submit?

No. We are unable to retrieve or remove individual responses once they have been submitted sorry. This is because the survey is anonymous, we don’t have access to your contact details.

More information about the survey

HIV Futures is run by the Australian Research Centre in Sex, Health and Society, La Trobe University. The survey has been developed in consultation with a variety of community groups and it is officially supported by the National Association of People with HIV (NAPWHA), the Australian Federation of AIDS Organisations (AFAO) and the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM).

The HIV Futures survey is a survey of people living with HIV (PLHIV) in Australia. The survey asks about health, treatments, work, financial and housing security, stigma, relationships and social supports as well as community service access. It aims to provide up to date information on what living with HIV in Australia is like to inform policy and program development.

If you would like to read reports from previous HIV Futures studies please go to our website http://www.latrobe.edu.au/arcshs

Why should I complete this survey?

Findings from the HIV Futures survey are used to inform policy related to HIV in Australia and to shape service delivery. We work closely with the HIV service sector to ensure that HIV Futures provides information of direct relevance to the needs and interests of this sector and their constituents. We will also use the findings to report information to the Australian Department of Health about whether targets for the National HIV Strategy relating to quality of life among PLHIV are being achieved. It is important that the HIV Futures survey accurately represents PLHIV in Australia in terms of the breadth and diversity of PLHIV and the range of issues relevant to living with HIV in contemporary Australia. We are very grateful to people for taking the time to complete this survey.

Are there any risks to me if I complete this survey?

Some questions in the survey may touch on issues which are sensitive or upsetting for you. If you do not wish to answer a question, please just skip over it. If you need further information, support or just to talk to someone after completing this survey a list of contacts for relevant services is provided at the end of this page.

What if I do not want to complete the survey?

This survey is voluntary. You are under no obligation to complete the survey. Service providers will not know if you do or do not complete the survey. Choosing not to complete this survey will have no impact on the relationship or services you receive from any organisation or clinic.


We do not collect names or addresses or other information through which we can contact you or identify you by name as part of this survey.

In the opening section of the survey, you have the option of providing details that will enable us to compare your answers to this survey (HIV Futures 10), with the HIV Futures 8 or 9 (if you provided them previously) and/or with the next HIV Futures survey if you chose to also complete this (HIV Futures 11, due in 2023 [subject to funding]).

These details are designed to be meaningful to you so that you can easily recall them for future studies, but broad enough for you to not be easily identified by others. The questions are optional, if you do not wish to provide this information, please just skip these questions. We will not use your answers to these questions in data analysis and no-one will have access to this information except the researchers working on this project.

We do not collect information about your IP addresses.

You have the option of providing us your contact details if you would like to receive information about the findings of the study and/or if you would like to be sent information about future HIV Futures studies. You do not have to provide these details. Personal contact details provided will be stored in a database separate from the survey data and will not be able to be linked to your survey answers.

Security and storage of data

The data collected in this survey will be stored in a dedicated, password protected folder on the La Trobe University server. The data will be retained for comparison with previous and subsequent HIV Futures surveys. Data used for analysis will be de-identified.

The researchers on this project are Associate Professor Jennifer Power (La Trobe University), Dr Thomas Norman (La Trobe University), Dr Adam Hill (La Trobe University), Associate Professor Anthony Lyons (La Trobe University), Associate Professor Adam Bourne (La Trobe University), Dr John Rule (NAPWHA), Jen Johnson (La Trobe University), and Dr Timothy Broady (UNSW). It is possible that in the future new researchers will be employed on the HIV Futures project who will have access to the data. However, access to the data will not extend beyond the HIV Futures research team.

Email addresses collected in the further information section will be stored separately to other data.

How will my survey information be used?

A report of the survey findings will be produced and made freely available via our website (http://www.latrobe.edu.au/arcshs) and as a hardcopy booklet. Findings will also be used to produce academic papers, community briefing sheets and reports for government and community organisations. Data will only be reported in aggregate, we will not report on any individual cases, so there will be no means of identifying individuals who completed the survey in any published material.

Thank You Prize draw

At the end of the questionnaire you are invited to enter a “thank you” prize draw for a chance to win 1 of 4x $250 Coles-Myer gift cards). For this you will need to provide an email address or telephone number. The information you provide will be stored separately to survey responses in a password protected folder, using a password protected file. The email address you enter for the prize draw is in no way linked to your answers in HIV Futures 10, which remains anonymous.

Obtaining copies of the survey findings

If you would like to receive a copy the main report produced from the survey, please leave your details when prompted at the end of the survey. These details will be stored separately from your survey answers. Alternatively, you can e-mail us at hivfutures@latrobe.edu.au or download a copy of the report from www.latrobe.edu.au/arcshs. The report will be available by Q3 2022.

Where can I find support or more information?

Completing this survey may bring up experiences that have been distressing for you or make you feel uncomfortable or upset. A list of phone numbers can be found below and at the end of the survey where you may contact people to discuss these.

If you are uncomfortable about answering any question, just move on to the next one. Skipping a question or section in the survey will not make your other answers less useful, we will still use your information from any questions you have completed.

Further enquires

If you would like further information about the project please contact our research team via email to hivfutures@latrobe.edu.au or contact the Australian Research Centre in Sex, Health and Society at La Trobe University via phone to 03 9479 8700. Please ask to speak to the main researcher on this project, Associate Professor Jennifer Power.

Any concerns about the study?

If you have any complaints or concerns about your participation in the study that the researcher has not been able to answer to your satisfaction, you may contact the Senior Human Ethics Officer, Ethics and Integrity, Research Office, La Trobe University, Victoria, 3086 (P: 03 9479 1443, E: humanethics@latrobe.edu.au). Please quote the application reference number HEC21061.

Consent Form – Declaration by Participant

I (the participant) have read and understood the Participant Information Statement, and any questions have been answered to my satisfaction.

If you decide to take part in the study, you are telling us that you:

  • Agree to participate in the survey.
  • Know you can refuse to take part in the research or exit the survey at any time.
  • If you have provided your contact details to be recontacted for future research projects, you can request to withdraw those details at any time.
  • Consent for your survey responses to be used in this study
  • Consent that your survey responses may be included in conference presentations and published in journal articles on the condition that I cannot be identified.
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To save your responses and end the survey, click the 'End Survey' button below. If you have selected the wrong option by accident and/or wish to return to the survey, click the 'Return and Edit Response' button.