Key steps to implementation

The process for implementing the Stigma Index in each country will be unique, drawing on the strengths and diversity of the different partners. Each country project must remain committed to the ethos of the Stigma Index overall, ensuring that it remains by, and for, people living with HIV.

To give an idea of how country level implementation of the Stigma Index might look like, there could be 37 steps involved:

  1. Set up an initial planning committee to identify key partners and familiarise them with the Stigma Index. 

  2. Seek guidance from the Stigma Index International Partnership (UNAIDS, GNP+, and ICW) through its Secretariat coordinated by GNP+ ( 

  3. Introduce the Stigma Index research study to key stakeholders and partners in the local site, region, or country.
    - Discuss how the research results from the Stigma Index can support local advocacy and other activities.
    - Clarify the roles that key stakeholders and partners can play in the research process.
    - Discuss what resources are available for the research and how any necessary additional resources can be mobilized.
    - Discuss a dissemination strategy for the results, including sharing the results with the study participants and the wider community.
    - Agree to timelines and a mechanism to keep key stakeholders and partners involved about the progress of the research.

  4. Set up a Steering Committee - invite stakeholders and partners in addition to people living with HIV networks and organisations, UNAIDS, National AIDS commission, research organisations, local community-based organisations providing services to people living with HIV, networks of Key Populations, legal- and human rights groups, etc. 

  5. Identify the Country coordinator for the project. Ideally this should be someone from a network of people living with HIV. 

  6. Approve the Terms of Reference for the research partner and appoint. 

  7. Research partners to develop the sampling frame and sample size.

  8. Work with partners to develop a proposal, timeline and budget (based on the sampling frame). Ensure that this includes using the evidence gathered for advocacy. 

  9. Fundraising - approach potential funders to raise sufficient funds for the research.

  10. Work with the research partners to prepare a research protocol and submit it to the relevant authority for ethical review.
    Consider approaching a local university or research institution that has done similar community-led participatory research to be a partner on the project and to assist with obtaining ethical approcal for the study. 

  11. Recruit interviewers (who should be people living with HIV and should include representatives of key populations), data capturers and data analysts. It might also be necessary to secure some part-time financial and administrative support.

  12. Clarify the different roles and responsibilities that the various team members will play in the research process.
    Have each team member and service provider sign a confidentialy agreement (User Guide Appendices 5-9).

  13. Establish an appropriate system to manage the financial and administrative aspects of the research process. 

  14. Set up a data collection system - establish a safe way to transport the data from the field and a safe place where the data, the interviewee contact and code list can be stored. 

  15. In consultation with members of the local people living with HIV networks and Steering Committee, check if any adjustments need to be made to the questionnaire to reflect the local context. E.g., to add references to specific indigenous populations in Section G. All proposed changes should be shared with the Stigma Index Secretariat.

  16. Develop a list of organisations that interviewees can be referred to should they require further support.

  17. Arrange that the questionnaire, information sheet and consent forms are translated into the local language(s).
    Have the translated documents checked for quality by having another translator review them or back translate them into English and compare with the original. 

  18. Develop the criteria and circulate a call for those willing to be interviewed - use a range of methods to recruit and select interviewees to ensure a rang of respondents. 

  19. Arrange suitable venues in which the interviews can be conducted.

  20. Agree, based on local custom and practice, what an appropriate honorarium would be for the interviewees (e.g. cash, a food parcel, t-shirt and/or with the provision of a meal and transport money).

  21. Train the interviewers, who are people living with HIV, to be able to conduct the interviews. This should be done by the network of people living with HIV coordinating the project with the support of the research orhanisation. During the training, interviewers should be familiarised with relevant national laws and policies.

  22. Set up a support mechanism to ensure there is regular support for the supervisors and interviewers. 

  23. Enstablish a process for documenting the journey.

  24. Ensure that there are a sufficient number of copies of the questionnaire, the informations heet, the informed consent forms and the referral list for the interviews.

    Ensure that the necessary stationery, refreshments and honoraria are available for each interview.

  25. Introduce the Stigma Index to potential interviewees and set up the interviews.

  26. Conduct the first batch of interviews.

  27. Bring the interviewers together to iron out any difficulties they may have experienced during the first batch. 

  28. Continue with interviews.

  29. Set up and conduct case study interviews with the chosen interviewees.

  30. Enter the data from the questionnaires into the preferred data capture system; ideally the Stigma Index Data Portal.

  31. Analyse the results and write up the case studies. 

  32. Present the results of the research to the research team, members of the local people living with HIV network(s) and Steering Committee members for their comments and feedback.

  33. Develop a dissemination/communication strategy, an advocacy strategy and budget. If possible include small grants to local organisations and key population networks to work with the data, and advocacy training could also be included.

  34. Write the report based on the template report format.

  35. Circulate report for peer review by the International Partnership and revise and finalise the report.

  36. Disseminate the report as agreed upon in the strategy and the different ways of taking action following the study results.

  37. Take forward advocacy actions and report recommendations and communicate/share the impact of this with the International Partnership.