Global LGBTI Internet Survey on Happiness, Sex and Quality of Life

Project Description

Worldwide, lesbian, gay, bisexual, transgender and intersex (LGBTI) people contend with exceptionally high risks for HIV infection, stigma and discrimination, and for exclusion from HIV and other health services. LGBTI people are often hidden and difficult to assess as part of general population-based surveys. Thus, assessing their exposures and outcomes and burden of HIV disease is extremely challenging. This presents a dilemma for HIV surveillance as their omission from surveillance systems leaves significant gaps in our understanding of HIV epidemics.

 

UNAIDS, LGBT Foundation, the University of Aix-Marseille and the University of Minnesota are working together to create a global platform for amplifying the voices, experiences, and concerns of lesbian, gay, bisexual, transgender, and intersex (LGBTI) people. As a result, we are launching a Global LGBTI Internet Survey on Happiness, Sex and Quality of Life.

 

Investigators

The research project involves the Joint United Nations Programmes on HIV/AIDS (UNAIDS), the LGBT Foundation, the University of Aix-Marseille and the Medical School of the University of Minnesota. The investigators are:

• Erik Lamontagne (Senior economist, Strategic Information, UNAIDS): Principal Investigator, in charge of data collection, lead modelling and analysis.
• Sean Howell (President and CEO of The LGBT Foundation): Principal Investigator, owner of the data, in charge of data collection, modelling, analysis.
• Anna Yakusik (Economist, MSc, MBA, Strategic Information, UNAIDS): data collection, modelling, statistical analysis, quality assurance.
• Bruno Ventelou (Professor, Research Director, CNRS, University of Aix-Marseille): modelling, econometric analysis.
• Michael W. Ross (Professor, MD, PhD, MPH, MHPEd, MSt and Chair of Sexual Health Education, University of Minnesota Medical School): modelling, sexuality and psychology analysis.

Objective of the research:

• conduct a cross-sectional observational, non-interventional, internet survey in consenting 18+ year-old LGBTI participants using an anonymous web-based self-administered questionnaire without any geographical restrictions;
• examine correlates of HIV infection to understand how survey variables, such as demographic, economic, socioecological, homophobic, psychosocial, attitudinal and behavioural, potentiate HIV risk behaviour and access to and uptake of HIV care and treatment services;
• provide evidence in favour of more LGBTI-inclusive health and HIV service delivery, advocacy, and policymaking.

Methods:

We imply internet sampling method to conduct the cross-sectional survey recruiting consenting adult LGBTI participants. We select internet sampling for it demonstrated to be particularly useful for hard-to-sample populations, higher number of respondents among hard-to-reach populations, faster recruitment, lower operational cost, greater level of anonymity and security provided to participants. Acknowledging selection bias, we may apply techniques, e.g. prediction modelling, to correct for the bias that results from differential access to, and use of, the internet.

The questionnaire of the survey contains established instruments for collecting survey data among key populations, such as LGBTI people, using validated questions and scores. These instruments include questions that have been used throughout the world; thus, their continued use will enable researchers to compare survey results across countries. The standardized instruments provided with these guidelines were designed to be self-administered using electronic or web-based data collection methods.

 

The questionnaire was built on the following four principles:

1. The process must preserve the complete anonymity of respondents. The privacy and security of respondents must be ensured at every step of the survey;
2. Questionnaire should be as short as possible. Only questions that are necessary should be included;
3. Filling out the online questionnaire should expose participants to no more than minimal risk, such as minimal discomfort, minimal anxiety;
4. Questions selected should have their reliability and validity already demonstrated and their collection should enable triangulation with other surveys.

Questionnaire

The content of the questionnaire is harmonized with standard indicators and protocol checklists used in behavioural surveillance. The questionnaire is organised as modules focused on particular topics, including the following investigation topics:

• Demographics
• Socioeconomic status
• Behaviours increasing vulnerability to HIV infection (e.g. unprotected receptive anal intercourse, buying sex, selling sex, sharing nonsterile injecting equipment, alcohol and drug use)
• Stigma and discrimination in the community and health facility (sexual orientation, gender identity, HIV)
• Internalized homophobia
• Violence
• General health status
• Mental health, including depression
• Social support
• HIV prevalence, access to HIV and other health services, HIV services uptake:
  • Knowledge of serostatus
  • Eligible but not on HIV treatment
  • Viral load suppression
  • Unsuppressed viral load
  • Currently in care
  • Currently on antiretroviral therapy
  • Discussed pre-exposure prophylaxis
  • Use of pre-exposure prophylaxis
  • Health-care stigma

The consensus questionnaire consists of three modules:

• The 1st module for LGBTI people, comprising 43 questions;
• The 2nd module for MSM and transgender people, comprising 15 questions;
• The 3rd module on HIV stigma, comprising 22 questions.

It was our preference to start and finish the survey with relatively comforting questions and statements to reduce any unforeseen discomfort in the participants.

 

The survey is translated into 17 languages: Arabic, Bengali, Chinese, English, Farsi, French, Gujarati, Hindi, Japanese, Marathi, Portuguese, Russian, Spanish, Thai, Turkish, Ukrainian, and Urdu.

 

The survey is designed in collaboration with representatives of the PLHIV and LGBTI communities who have our thanks for their valuable help to develop the content of the survey. The results will inform the information gap, enable advocacy, provide data for decision making, and shape public health programs addressing multiple dimensions of socioeconomic inequalities.

 

To safeguard the rights and welfare of the survey participants the access to the online survey is provided via a secured anonymous SSL encrypted weblink. With support of the LGBTI global networks we anticipate that the survey will be shared with more than 25 million LGBTI people via social media around the world.

 

The survey was approved by the Research Board of Ethics of the University of Aix-Marseille, and by the WHO Research Ethics Review Committee (ERC). The survey tool is compliant with the General Data Protection Regulation (GDPR) which is probably the highest standard with respect to privacy and personal data. The research protocol is available upon request.

 

The survey is opened for participation until 31 July 2019 and takes on average 12 minutes to complete. The responses are completely anonymous. The participation is voluntary, and the participants have the right of withdrawal from the survey at any time or skip any sensitive question/s. Participation to the survey is voluntary and no incentivise is provided If you want to participate

• You must be at least 18‐year‐old to perform this survey.
• We understand some questions might sound disturbing. Please share your experience. It will help to create a more inclusive environment for everyone.
• To be in touch, make any information requests, alert us, or exercise your right of withdrawal please contact us at: research@foundation.lgbt.com

Your support with the survey promotion will be significant to make sure that the voices of the LGBTI communities are heard. You may share the survey via: https://www.research.net/r/LGBTHappinessResearch

 

Findings

This webpage will be updated with the results and findings in a due course.  You can sign up to receive the findings here.

 

To be in touch, make any information requests, please contact us at: research@foundation.lgbt