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Young? HIV Positive? Tell your story.

 

About

What is the research about?

Young + Positive is a study that aims to understand how young people (aged 18-29 years old) living with HIV relate to their own health, living with HIV, and to HIV supports and services. We want to know if there are any ways to better support young PLHIV through these experiences. We think this research is important because:

 

  • There is a gap in services targeting young PLHIV in Australia

  • There is also a gap in the Australian literature about young PLHIV

  • A proportion of young PLHIV have specific needs

  • Adult-centred services may not meet these specific needs

  • All of these factors may impact on the health and wellbeing of young PLHIV

 

This is a national study. We currently have partnerships with several organisations to help us with the study including:

 

  • Melbourne Sexual Health Centre (MSHC)

  • Alfred Health

  • Royal Melbourne Hospital (RMH)

  • Sydney Children’s Hospital (SCH)

  • Living Positive Victoria (LPV)

  • Victorian AIDS Council (VAC)

  • AIDS Council of NSW (ACON)

  • The Institute of Many (TIM)

  • Youth Empowerment Against HIV/AIDS (YEAH)

 

Who is doing this research?

Young + Positive is a PhD study being completed by Lisa Wojciechowski through the University of Melbourne, Department of Social Work.

 

Lisa Wojciechowski is a social worker who has worked with people living with HIV for several years both in community and hospital services. Through this work, Lisa got interested in this research topic. She noticed that young people tend to experience their diagnosis of HIV differently from older people, and that there aren’t many services targeted at supporting young PLHIV through these experiences.

 

The research is supervised/overseen by Professor Louise Harms (University of Melbourne) and Associate Professor Christy Newman (Centre for Social Research in Health, UNSW Australia).

 

The results of this research will be used by the researcher, Lisa Wojciechowski, to obtain a doctorate degree in social work.

 

Who can get Involved?

We are keen to hear from people who are:

 

  • HIV positive

  • 18-29 years old

  • Currently living in Australia

 

How can I get Involved?

There are two ways to participate in the study.

       

1.  Complete the online survey

 

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2. Participate in an interview

 

How will my information be used and stored?

At all times we will keep the information that we collect stored securely. At all times, your information will remain confidential (private) and de-identified (not linked back to you personally). 

 

We will make sure we keep your information stored safely, so that anyone other than the research team cannot access it deliberately or by accident.

 

As per legal requirements, we will keep the information (in a de-identified format under password protected files) for the standard 7 years before destroying it.

 

Because we think this research is important for people to hear about, we want to use the information we collect for the completion of a PhD thesis as well as journal article/s and conference papers.

 

In any publication and/or presentation, information will be provided in such a way that you cannot be identified, except with your permission. 

 

What if I don't want to participate?

Choosing to take part in this research is totally up to you. If you choose not to participate that is absolutely ok.

 

Can I withdraw from the study?

Participating in this research is completely voluntary. If you do not consent to participate, consider withdrawing before submitting the online survey.

 

Because we collect all data anonymously, it will not be possible to withdraw your data once you have submitted your survey. If you decide to stop the survey mid-way, the researchers would like to keep the information that was collected. This is to help make sure that the results of the research can be measured properly.

 

Your decision whether to take part or not, or to take part and then withdraw, will not affect your relationship with the research team or with any partnering organisations.

 

What are the benefits of participating?

Right now, there are very few services and resources in Australia to support young PLHIV. We want to use the results of this research to find ways of better supporting young people in Australia with their experiences of living with HIV. By participating, you’ll get to have your say about what is important to you, and contribute to our understanding about what matters.

 

Are there any risks?

Due to the sensitive nature of this topic, participation in this research may bring up uncomfortable emotions for some people. If this happens to you, you can stop the survey at any time.

 

Participants with pre-existing mental health issues are encouraged to discuss the study with their mental health practitioner. If you feel you need debriefing/follow up after the survey, you are encouraged to get in touch with existing services you already access to get help.  Or, the researcher is able to arrange for counselling or other appropriate support if needed. Any counselling or support will be provided by staff who are not members of the research team. To do this, contact the researcher (Lisa) on: 0422 991 883. Alternatively, you can call lifeline on: 13 11 14 for 24 hour help over the phone.

 

Is this research project approved?

The ethical aspects of this research project have been approved by the Human Research Ethics Committees of:

 

  • Alfred Health

  • University of Melbourne

  • Victorian AIDS Council (VAC)

  • AIDS Council of New South Wales (ACON)

  • Sydney  Children's Hospital

  • Royal Melbourne Hospital

 

This project will be carried out according to the National Statement on Ethical Conduct in Human Research (2007) produced by the National Health and Medical Research Council of Australia. This statement has been developed to protect the interests of people who agree to participate in human research studies.

 

Where can I get more information about this study?

If you have more questions about this study, please feel free to contact the PhD student: Lisa Wojciechowski by clicking here or calling/texting: 0477 795 605.

 

What if I have concerns or want to make a complaint?

If you have any concerns about how this project is being undertaken that you don’t want to discuss with Lisa or the research team, please feel free to contact: Manager, Human Research Ethics, University of Melbourne, VIC 3010. Tel: (03) 8344 2073. All complaints will be treated confidentially. In any correspondence please provide the name of the research team or the name or ethics ID number of the research project.

 

 

 

Survey

The survey asks questions about:

 

  • Demographics - broad ‘population’ based information like your age, your postcode and your gender

  • Psychosocial characteristics - the social and environmental aspects that impact on you, like housing, income and family

  • Clinical - the medical aspects of your health, like if you take medications, your CD4 count and viral loads (if you know them)

  • Services and supports –how you use these and how much access you might have to them

 

 

Interviews

Interviews focus on things like:

 

  • How you relate to living with HIV

  • How you relate to your health

  • What supports and/ or services you have used

  • What makes it easier or harder to access those services

  • What you think is needed in terms of supporting young people living with HIV

 

Results

We are currently in the analysis phase of the research. Watch this space for details about results when they become available...

 

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If you'd like to know more about the Young + Positive study  get in contact with us. Let us know if you'd like us to call or email you in the message section.