Communication and advocacy

In order for the index to be useful, that is, for the perspectives and experiences of people living with HIV to inform policy and programme responses to address stigma and discrimination related to HIV, people need to know about the findings of the research.
Ideally, the research team should first present their findings to local networks of people living with HIV that were key partners in the research process. Many of the interviewees will be interested to hear about how their individual experiences compare with the bigger picture. Following this initial process of feedback, the research team should consider the best way to record and share the overall findings with a wider audience.

Some things to consider when thinking about communicating findings from your research:

  • What are the key findings from the research? Who should know about them?
  • What is the best way to communicate the findings? For example, is a report the best way or would a meeting be more effective?
    - If a report is the best way, who should write it? Who will read it? And what language, tone, style will be most appropriate?
    - If you decide a meeting is the best way to communicate the findings, who should you invite? Is a group discussion appropriate; or would a one-on-one meeting be better? And where is the best place to hold this meeting so that everyone can engage in the discussion?
  • Be creative! When communicating the research findings, try to think of a way that will be effective, accurate and also grabs attention.
  • the International Partnership (UNAIDS, GNP+, and ICW) works with local implementing partners to consolidate the research findings so that as well as the findings being shared to share with key stakeholders and decision-makers working or living within the communities in which the survey was conducted, but are also available to inform the regional and global picture of what we know about HIV related stigma and discrimination. 

Systems are being developed to store data collected that is coordinated by UNAIDS, GNP+ and ICW. However we also hope that the People Living with HIV Stigma Index questionnaire, User Guide and accompanying training tools will be taken up beyond the scope of the partnership. The International Partnership is open to suggestions of how these resources can be adapted to serve local needs and priorities better. Our core principles are that any adaption the tool and process is in accordance with the key principles of the index and is agreed with the international partnership in advance.
The People Living with HIV Stigma Index is a participatory methodology, and for the research to be branded as the People Living with HIV Stigma Index, it needs to satisfy the following criteria:

  • People living with HIV need to lead the design, organizations, planning and all aspects of implementation
  • The interviewee and interviewer must both be living with HIV
  • The interviews have to occur on a one-to-one, face-to-face meeting in a safe space for the person living with HIV interviewed