The Communication Initiative
Development action with informed and engaged societies
The Communication Initiative
After nearly 28 years, The Communication Initiative (The CI) Global is entering a new chapter. Following a period of transition, the global website has been transferred to the University of the Witwatersrand (Wits) in South Africa, where it will be administered by the Social and Behaviour Change Communication Division. Wits' commitment to social change and justice makes it a trusted steward for The CI's legacy and future.
 
Co-founder Victoria Martin is pleased to see this work continue under Wits' leadership. Victoria knows that co-founder Warren Feek (1953–2024) would have felt deep pride in The CI Global's Africa-led direction.
 
We honour the team and partners who sustained The CI for decades. Meanwhile, La Iniciativa de Comunicación (CILA) continues independently at cila.comminitcila.com and is linked with The CI Global site.
Time to read
2 minutes
Print
a- a+
Published 22 years ago
Last updated 1 year ago
Read so far

Draft guidelines on ethical participatory research with HIV positive women

0 comments
Summary

The International Community of Women Living with HIV/AIDS (ICW) believes that much current research on HIV ignores gender-related differences related to transmission, the effects of the virus on the individual concerned, and appropriate forms of care or treatment for that individual. Much current research, they claim, also ignores the effects of the research process itself on the psychological and economic well-being of the women involved. For this reason, ICW says, involving HIV-positive women from all backgrounds in the entire research process is crucial: "We believe that, as women living with this virus, we are uniquely placed to contribute our knowledge, skills and experience to all research conducted on this issue, as well as to all research which explores more effective ways of preventing acquisition or further transmission of the virus."


To support this aim, ICW has developed draft ethical guidelines designed to help researchers appraise the extent to which their projects align with principles of participatory research. The guidelines are adapted from those developed by the Royal Society of Canada regarding participatory research.


The guidelines are presented in the form of a series of categories, which are then divided into a series of questions, as follows:

  1. Participants and the nature of their involvement
    • Examples of questions posed here include: Will different sections of the community and the diversity of their experiences and perspectives be acknowledged and respected during the research process? Is attention given to barriers to participation, with consideration of those who have been underrepresented in the past? Has attention been given to enabling community members to understand the researchers' commitment to the issue?
  2. Origin of the research question
    • Examples of questions posed here include: Did the impetus for the research come from the community? Is an effort to research the issue supported by the community?
  3. Purpose of the research
    • Examples of questions posed here include: Can the research empower the community by facilitating learning about individual and collective resources for self-determination? Can the research facilitate collaboration between community participants and resources external to the community?
  4. Process and context-methodological implications
    • Examples of questions posed here include: Does the research process apply the knowledge of community participants in the phases of planning, implementation, and evaluation? Are the methods used for research accessible by non-literate as well as literate community participants (like role-play and drawing)? Are community participants involved in analytical issues like interpretation, synthesis, and verification of conclusions?
  5. Opportunities to address the issues of interest
    • An example of questions posed here includes: Does the process reflect a commitment by researchers and community participants to social, individual, or cultural actions consequent to the learning acquired through research?
  6. Nature of the research outcomes
    • Examples of questions posed here include: Will HIV-positive women be able to review written or oral reports for content, language, and style before public presentation? Is there attention to or an explicit agreement between researchers and community participants with respect to ownership of the research data and dissemination of the research results?

Organisers propose that researchers set up a "stakeholders' research advisory group" so that researchers might review these questions with a wide spectrum of community members. ICW asks that those with comments or suggestions about this draft document send them to info@icw.org by October 1 2003.


Click here to access the guidelines on ICW's website.


Source

Posting from the Gender-AIDS list server dated August 19 2003 (GENDER-AIDS eForum 2003 gender-aids@healthdev.net). Source of posting: IRIN PlusNews Weekly Issue 142, 15 August 2003.