August 1999

Impact of Involvement

The Horizons researchers found that involvement of people living with HIV/AIDS in CBOs can have an impact on the health and quality of life for this population, on increasing sensitivity of HIV-negative members toward PLHA, on the kinds of service delivery offered, on the effectiveness of prevention activities, and on the quality and appropriateness of care and support services.

Personal impact. Perhaps the most immediate impact of involvement is on the individual person living with HIV/AIDS, for whom CBO membership may represent the first proactive effort to deal positively with the devastating personal reality of HIV infection. Most HIV-positive respondents in the study reported significant improvement in psychological state and an end to the isolation they’d experienced through contact with other people living with HIV/AIDS and involvement in prevention and care activities.

“When I was not a part of the association, I felt abandoned [and] guilty for what had happened to me,” said a member of REVS+. “Since becoming a member, I have told myself that what is done is done. I have to come to terms with it, to fight it and not to give in.”

Most also reported a change in perceptions of HIV infection, due to:

• Training and information received within the framework of the CBO.
• Improvement in health, through better access to care.
• Better integration within the family and community.
• The use of CBO membership as a means of promoting prevention among family and community members and of indirectly revealing serostatus if direct disclosure is too difficult.

Negative consequences of involvement are also sometimes possible, including discriminatory reactions from family and friends. One possible negative impact—although quite rare—may occur with asymptomatic caregivers who provide support to terminal patients and begin to identify with the people they care for. This “mirror effect” can have serious psychological consequences for the caregiver.

Impact on the quality and effectiveness of care. The involvement of people living with HIV/AIDS in counseling and in providing care and support to those who first learn of their serostatus is an important factor in identifying the needs of beneficiaries and may also have a profound impact on service recipients.

“I am convinced that you are more hopeful when the person who tells you your serostatus … is himself infected,” said a member of REVS+. “When you are told you are seropositive, you feel alone … but from the moment you share your problem with someone else, you identify yourself with the world again.”

This same dynamic is at play in provision of psychological support to people living with HIV/AIDS who seek help from CBOs. Knowing that the CBO member offering support is also HIV-positive provides a positive, active, engaged role model for people living with HIV/AIDS who may feel worthless, hopeless, or isolated. Service providers who are HIV-positive can also offer invaluable advice on self-care based on their own experience.

Unfortunately, the study also found that, in most CBOs, members who are living with HIV/AIDS rarely inform HIV-positive clients of their serostatus. To improve this situation, four of the CBOs studied are setting up support groups that will offer protected “spaces” in which people living with HIV/AIDS—both service providers and recipients—can talk freely about their problems and exchange information and solutions to personal and health problems. One reason for the formation of such groups is that HIV-positive people need to feel at ease within a smaller subgroup in order to feel at ease within the CBO and subsequently within society as a whole.

During the results analysis workshop, an ALAVI member presents the organization's strategies.

Impact on prevention activities. Despite the widespread belief among the five CBOs, National AIDS Programme managers, and policymakers that the visible involvement of people living with HIV/AIDS can have a dramatic impact on the effectiveness of prevention activities, very few CBOs in Burkina Faso have actually carried out such activities. It was thus difficult for researchers to measure the value of this form of participation.

The handful of such activities that were reported by CBO respondents in the study appeared to them to have a powerful effect on the perceptions and attitudes of prevention audiences, putting a human face on the epidemic that personalized the issue for many. In addition to the power of deterrence messages delivered by someone who must live with the infection, listening to the experiences of asymptomatic HIV-positive people helps counter the terrifying public images of illness and death that dominate some national-level HIV/AIDS prevention campaigns. Direct encounters with people who are infected can also prompt audience members to have themselves tested so that they know whether they need to take proactive measures to protect their health.

The public testimony of HIV-positive people may also have negative consequences, the researchers found. In addition to the risk of stigmatization for the those who publicly self-identify as HIV-positive, the CBO itself may become identified as an association of “HIV carriers,” and not all members may be prepared to handle this label. Some CBO respondents also warned of the possibility that people living with HIV/AIDS who tell their personal stories to the public may become media “stars” whose fame eclipses the mission of the organization itself; this can lead to difficulties within the group. This occurred for REVS+ in 1998, when a member became the first seropositive person in Burkina Faso to appear on television, creating a public identity for the CBO as a PLHA association that few members were ready to accept at the time. REVS+ has since then presented itself as a CBO with HIV-positive members.

A representative of REVS+ speaks at a rally calling for better access to care for people living with HIV/AIDS.

CBO members who have had to deal with this issue told researchers that the question of visibility is one that must be addressed beforehand, so that benefits can be weighed against possible negative impacts on personal, organizational, and societal levels.

Impact on HIV-negative CBO members. When HIV-positive people become involved in CBO activities, they often have an immediate and positive impact on other CBO members, the researchers found. HIV-negative members may find themselves associating with HIV-positive people on a very different level than before, as comrades in a common cause rather than simply service recipients, which may help broaden their own perceptions of the people their CBO serves. HIV-negative members may also gain knowledge about the needs of people living with HIV/AIDS from HIV-positive members that can help them improve counseling skills and care and support efforts.

See Also

• Population Council – Burkina Faso
• Population Council – HIV/AIDS

For additional information please contact: 
Horizons 
Population Council 
4301 Connecticut Ave. NW, Suite 280 
Washington, DC 20008
Telephone: +1 202 237 9400 
Facsimile: +1 202 237 8410 
E-mail: horizons@popcouncil.org 

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This page updated
19 Oct 2007