Participant information

What is the
People Living with HIV Stigma Survey UK?

The People Living with HIV Stigma Survey UK is an initiative driven by people living with HIV for people living with HIV and aims to collect information about stigma and discrimination in the lives of people living with HIV. It is funded by the MAC AIDS FOUNDATION. The UK’s leading sexual health charity FPA and Homerton University Hospital NHS Foundation Trust have come together to deliver this project.
Why have I been invited?

You have been invited to complete the survey because you are a person over the age of 15 living with HIV in the UK. We invite you to share your experience and contribute to the knowledge around how stigma and discrimination affect the lives of people living with HIV.
How do I take part?

The online survey will take about 15 minutes to complete. You can do this on any device with internet access (phone or computer). Once you begin, you are not able to log out of the survey and come back later to complete it so you need to
complete all questions in one session. For the research to be most effective, please answer all of the questions even if they may be sensitive in nature.
Why should I take part in the survey?

Data from this study will provide valuable information about stigma and discrimination experienced by people living with HIV. This could help to inform interventions, policy and improve health services for people with HIV in the UK.
Do I have to take part?

You do not have to take part in the survey. If you choose not to take part, your healthcare and legal rights will not be affected in any way. If you decide to take part and change your mind, you can quit the survey at any point.
Your answers will not be saved until you press “Submit” at the end of the survey.
Will my answers be kept confidential and anonymous?

Yes. Your answers are anonymous and will not allow you to be identified in any way. Your doctors and clinic will not see your answers, and your response will not affect your care in any way. More information about data storage and protection is available on the survey website.
Data Security and Insurance

The survey responses reside within an encrypted server with restricted access to members of the study team. Your IP address will not be stored.
Homerton University Hospital NHS Foundation Trust holds standard NHS Hospital Indemnity and insurance cover with NHS Litigation Authority for NHS Trusts in England, which apply to this study. This does not affect your legal rights to seek compensation. If you are harmed due to someone’s negligence, then you may have grounds for legal action.  Regardless of this, if you wish to complain, or have any concerns about any aspect of the way you have been treated during the course of this study then you should immediately inform the Investigator. The normal National Health Service complaints mechanisms are also available to you. If you are still not satisfied with the response, you may contact the study coordinator.
What do I do if I have questions or complaints about the survey?

Please contact Alastair Hudson (Stigma Survey UK Country Coordinator)
Prize draw entry terms and conditions

At the end of the survey you will be invited to enter a prize draw to win a smart phone. To enter you must provide an email address or phone number to contact you if you win. Contact details will be stored by PHE and used for the purposes of the prize draw ONLY. They will NOT be linked to your survey responses.
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