Volunteer

Welcome to the HIV Stigma Study website

For individuals living with HIV there can be many challenges that are not health-related. Working, travelling abroad, obtaining life-assurance for a mortgage- all of these things can be affected by a person’s HIV status.

The aim of this research study is to gain a greater understanding of the reality of living with HIV in Ireland today, with a special focus on the impact of stigma on the day to day lives of people living with HIV. This research study will form part of the researcher’s* doctoral thesis on HIV and stigma in Ireland today. The study is currently seeking to recruit volunteers to participate in one-on-one interviews.

If you are interested in finding out more about the project or if think you would like to volunteer, please get in touch via email: e.vaughan3@nuigalway.ie or DM on Twitter: HIV Stigma Study @StigmaStudyIE.

See below for further details on what is involved if you volunteer.

About the researcher:

Elena Vaughan is a second year PhD student in the Discipline of Health Promotion at the School of Health Sciences in NUI Galway. Prior to commencing her doctoral studies, Elena taught English and Critical Discourse Studies at the University of La Coruña. Elena has worked previously with Positively UK, a London based organisation that advocates for the rights of people living with HIV, and was involved in the Young Women’s Leadership Initiative at the International AIDS Society, Rome, 2011.

What is the purpose of the study?

The purpose of this research study is to explore how stigma has impacted on the lives of people living with HIV. Other topics of interest include, but are not limited to:

What is HIV-related stigma?

HIV-related stigma is defined by UNAIDS as the "...negative beliefs, feelings and attitudes towards people living with HIV and/or associated with HIV" (2010). Stigma can lead to discrimination of people living with HIV. This can take different forms- breaching a person’s right to medical confidentiality, denial of services or social exclusion are all ways in which a person might be discriminated against on the basis of their HIV status.

Institutionalised discrimination can occur through the existence of punitive laws, policies and practices that unfairly target people living with, affected by or at risk of HIV.

There are complex social, historical and cultural reasons for the existence of stigma and these can differ from one culture to another. Increasingly, however, researchers acknowledge that stigma plays an important role in the reproduction and maintenance of social inequality, regardless of location or culture (Parker and Aggleton, 2003).

Why is it important to understand HIV-related stigma?

Stigma can affect people in different ways:

Some people may feel isolated and marginalized and are often afraid to disclose their status to friends and family for fear of a negative reaction. This in turn can have implications for the mental health of people with HIV, leading to higher rates of depression and anxiety than those without HIV (Hatzenbuehler et al, 2011).

Stigma is also known to affect a person’s life chances and can directly impact things such as access to education, employment, healthcare and housing (Link and Phelan, 2001).

Studies have shown that HIV-related stigma and discrimination is linked to inconsistent adherence to treatment. This can result in poor health outcomes for some individuals living with HIV (Katz, 2013).

Furthermore, HIV-related stigma is a major barrier to accessing testing and treatment and consequently is considered one of the main drivers of the HIV epidemic world-wide (UNAIDS, 2014). Understanding how, why and where stigma occurs can help people living with HIV, as well as researchers and activists, to advocate for changes to policy and practice which may contribute to reducing discriminatory practices and help increase access to testing and treatment.

HIV and Stigma: Some Facts

HIV Facts

Did you know...?

Stigma Facts:

Did you know…?

(Stamp Out Stigma, 2008)

Volunteering: Information and FAQs

Volunteers:

We are currently seeking volunteers to take part in this research study.

In order to be eligible to take part in the study all volunteers must:

What would taking part in this study involve?

If you decide to take part in the Stigma Study you will be given a participant information sheet which will explain the purpose, risks and benefits of the study.

If you are unsure about anything, Elena will be happy to answer any questions or queries you might have.

If you agree to take part you will also be asked to sign a consent form.

You should only consent to participation in this research study when you feel that you understand what is being asked of you, and you have had enough time to think over your decision.

If you decide to take part you are still free to withdraw at any time and without giving a reason. A decision to withdraw at any time, or a decision not to take part, will not affect your rights in any way.

If you think you would like to take part in this study, please contact the researcher by email: e.vaughan3@nuigalway.ie.

What does taking part involve and how long will it take?

Taking part in this research will involve you participating in a one-to-one interview with the researcher. The interview should last between 30 minutes and 1 hour. With your permission, the interview will be recorded and transcribed word for word. Your confidentiality is of utmost importance. Recordings and responses provided by you will only be available to the researcher and will be made anonymous. As such, no individual will be identifiable in any publications from this research.

What are the possible benefits of taking part?

Taking part in this research will help the researcher gain an insight into some of the challenges experienced by people living with HIV in Ireland today as a result of their positive status.

By taking part in this research, you can help contribute towards creating an evidence base that may be used in the design of stigma reduction measures and in the creation of an evidence base that could advocate for improvements to policy and practice.

What are the possible risks of taking part?

There are no foreseeable risks attached to taking part in this research study. For some people, talking about experiences of stigma, rejection or discrimination may cause them to experience mild emotional distress. On the other hand, talking openly about these experiences can cause other people to experience a sense of relief and catharsis.

What happens at the end of the study?

At the end of this research the information will be analysed and interpreted. The results of the analysis will form part of the researcher’s PhD thesis. Throughout this process, confidentiality and anonymity will be a priority and no individual will be identifiable in publication or presentation.

What happens if I change my mind during the study?

You can change your mind about participating at any point during this study without disadvantage or penalty. If you withdraw any data related to you, such as interview recordings, will not be used and the data will be deleted/destroyed.

If you think you would like to take part in this study, please contact the researcher by email: e.vaughan3@nuigalway.ie