Key steps to implementation

The process for implementing the 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 index overall ensuring that it remains by, and for, people living with HIV.

To give an idea of how the country implementation of the index might look, there could be 22 steps involved:

  1. Discuss ideas and seek technical support from the People Living with HIV Stigma Index International Partnership (GNP+, UNAIDS and ICW)
  2. Introduce the People Living with HIV Stigma Index research study to key stakeholders and partners (the people living with HIV network and organizations) in the local site, region or country. Set up an advisory committee to guide the rollout of the index.
  3. Decide on the sampling frame and sample size.

  4. Prepare a proposal about the index and submit it to the relevant authority for ethical review with guidance from the research partner or university. 

  5. Recruit the team! Roles will include a team leader, interviewers who are people living with HIV, data capturers, data analysts, and probably someone to provide administrative and financial support for the project.

  6. Clarify the different roles and responsibilities the various team members will play in the process and have each team member sign a confidentiality agreement (examples given in Appendices 5-9 of the User Guide)

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

  8. In consultation with the partners and advisory group, decide which national law, policy or set of guidelines that upholds the rights of people living with HIV would be the most appropriate to include in Section 2D of the questionnaire

  9. Develop a list of local organizations that interviewees can be referred to should they require further support.

  10. Translate the questionnaire, information sheet and consent forms into the local language(s). Have them checked for quality by having another translator review them and others give their feedback. Best practice is to have the questionnaire 'back translated' into the original language again to check for consistency.

  11. Arrange for suitable venues in which the interviews can be conducted and establish a safe place for the data and the interviewee contact and code list to be stored.

  12. Train a group of interviewers, who are people living with HIV, to sensitiviely and ethically interview other people living with HIV and provide referrals to appropraite services. The interviewers could be trained in implementing the questionnaire as well as other life story or qualitative methodologies at the same time.

  13. Set up regular supervision meetings between the team leader and/or supervisors and interviewers.

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

  15. Prepare the materials for the interviews: Ensure that there are a sufficient number of copies of the questionnaire, the information sheet, the informed consent forms and the referral list for the interviews. Also copies of the relevant national law (decided in step 8) and the Declaration of Commitment on HIV/AIDS to be given out in the interviews. Also ensure that the necessary stationery, refreshments and honoraria are available for each interview.

  16. Introduce the People Living with HIV Stigma Index to potential interviewees and set up the interviews.

  17. Do the interviews!

  18. Set up and conduct case study or life history interviews with the chosen interviewees.

  19. Enter the data from the questionnaires into Epi-Info, in consultation with the International Partnership.

  20. Analyse the results and write up the case studies, in consultation with the International Partnership.

  21. Present the results the whole team, partners, advisory group, members of the local people living with HIV network for their comment and feedback.

  22. Communicate the results! Agree on how to operationalize the dissemination strategy and the different ways of taking action following the study results.