Living with HIV 2021-2022

What is it like to live with HIV? 

This survey has been developed as the Public Health Agency of Sweden would like to find out about what life is like for people living with HIV. It contains questions about your experiences, feelings, needs, relationships, your health, and your quality of life. The knowledge provided by this survey study is valuable when creating new initiatives aimed at people living with HIV.


Participation is voluntary. Your answers cannot be linked to you, and you do not need to prove your identity to be able to participate. You can quit the survey at any time by clicking the "Leave survey" button on the top right side of the page. However, once you have submitted the completed survey you will not be able to change your answers. Participation takes around 20 minutes.

Why are we carrying out the survey?

In 2014, the Living with HIV study took place. The results it generated have been used in education, improvement work and research. A lot has happened around HIV in recent years and consequently there is a great need for a new survey. The questions have been developed together with researchers and organisations for people living with HIV.

This survey links in with the third objective of the Swedish HIV strategy that focuses on minimising the stigma and discrimination related to HIV infections, and creating a climate in which people living with HIV feel able to talk about their infection without fear of discrimination.

Who is responsible for the study?

The Public Health Agency of Sweden is the entity responsible for research and the personal data controller.

Who will use the responses, and how?

The results will be compiled in a written report that will be published on the Public Health Agency’s website. The Public Health Agency will also present the study’s results in various contexts. The Public Health Agency may enlist researchers or other professionals to conduct in-depth analyses of the responses. Before disclosing any results, the Public Health Agency will conduct a thorough review and at group level. This means that the information cannot be linked to you as an individual.

How are your responses protected?

The Public Health Agency will protect your responses in accordance with Chapter 24, Section 8 of the Swedish Public Access to Information and Secrecy Act (2009:400).

How is the personal data processed?

The information can only be accessed by the investigators at the Public Health Agency who work with the project.

The Public Health Agency of Sweden is the data controller and is responsible for the processing of your personal data. Data will be processed in accordance with the EU General Data Protection Regulation (The European Parliament and Council’s regulation (EU) 2016/679) and the Act containing supplementary provisions to the EU General Data Protection Regulation (2018:218).

Consent to participate in the study Living with HIV in Sweden

By answering the questions, you consent to participating in the study.

If you have any questions

About the study, contact principal researcher Desireé Ljungcrantz, telephone: 010 205 2084,

About how personal data is processed, contact Data protection officer at the Public Health Agency of Sweden, telephone 010 205 20 00,, address: Box 505, 831 26 Östersund.

To read more about HIV, visit the Public Health Agency’s HIV Today website: (in Swedish only)

If you want advice from someone who knows what it can be like to live with HIV, contact one of the organisations below:


If you have been the victim of violence, contact

  • Sweden’s National Women’s Helpline. Telephone: 020 50 50 50,
  • Victim Support Sweden. Telephone: 116 006,
  • RFSL Support service for LGBTQ people. Telephone: 020 34 13 16,