There are four distinct types of PLHA involvement.

Access to services for PLHA involves taking part in NGO activities as beneficiaries or users of services, such as medical care, counseling, or training. Access was the most common type of PLHA involvement observed among the 17 NGOs participating in the study. At this first stage, PLHA learn not only about HIV/AIDS but how to accept their HIV status and cope with infection, which can help motivate them to help others.

I felt so alone. I thought I was going to die there and then…the group…has been a great psychological support…I haven’t been to a psychologist but I have been helped by seeing a group of people in the same situation; this has helped my self-esteem.
HIV-positive member, Fundación Siempre Vida, Ecuador

Examples of services that aim to empower PLHA and thus foster further involvement in NGO activities include the following:

• Positive living and life skills courses help PLHA come to terms with their HIV status and provide information and skills to gain control over their lives.
   
• Support groups provide an opportunity to share problems, offer mutual support, and furnish a safe space for PLHA to become visible. Support groups can empower PLHA by building their self-esteem and preparing them to be open about their HIV status.
   
• Counseling helps PLHA accept their HIV status and prepare for possible repercussions of visibility. Counselors can refer PLHA to other activities and to training to develop their capacity for further involvement. 

A member of Siempre Vida Foundation providing peer support, Guayaquil, Ecuador. Photo credit: International HIV/AIDS Alliance and Horizons

During the counseling…they discover their personal value in society and the community where they come from. The things they learn during counseling, education they acquire, and their own life experiences tend to make them come out in the open to help the community.
Service provider, Kara Counselling and Training Trust, Zambia

Inclusion is when NGOs involve PLHA as support staff and volunteers in non-HIV/AIDS activities or as occasional volunteers in HIV/AIDS service delivery (e.g., providing informal peer support at support group meetings, conducting home and hospital visits or community outreach activities). Formal training at this stage is limited. Important incentives for PLHA include greater access to peer support and interaction with other PLHA. However, there are few material rewards for their efforts. Use of PLHA as volunteers may be cost-effective for NGOs but can have an adverse effect on service quality if volunteers are poorly trained.

Participation is when PLHA deliver HIV/AIDS-related services on a formal, regular basis, as employees or volunteers. Their expertise is recognized by the organization and they generally receive financial remuneration for their work, although in Burkina Faso and Ecuador many regular volunteers do not receive any financial remuneration. These PLHA may be involved in planning the services they deliver and, in some organizations, are consulted about other services. At this level of involvement, PLHA have accepted their status and use their experience living with HIV/AIDS plus skills and theoretical knowledge gained in formal training to deliver services.

Greater involvement is the most advanced stage of involvement, where PLHA take part in management, policymaking, and strategic planning as directors, trustees, or program managers, and may represent the organization externally. This type of involvement implies a higher level of visibility that can expose PLHA to the risk of stigma and discrimination, although these PLHA are likely to be better able to cope because they generally have high levels of personal acceptance and support.

PLHA involvement in management and decision-making occurs in the rights-based organizations, such as PLHA groups and networks. With one exception, PLHA who participate in management, policymaking, and strategic planning completed at least secondary education and are from middle-income socioeconomic groups. Most have been involved in the fight against the epidemic for many years and have had considerable training. Examples of this type of involvement include the following:

• At MNP+ in India and REVS+ in Burkina Faso, PLHA manage the organization and specific programs, and at CHEP in Zambia, the coordinator and assistant of the PLHA program are both HIV-positive.
   
• At MNP+ and REVS+, PLHA were volunteer members of the board of trustees. At CHEP and Kara Counselling and Training Trust in Zambia, PLHA program coordinators are involved in organizational strategic planning.
   
• PLHA who manage organizations and programs often have a significant representative role outside the NGO with which they are involved, expressing the perspectives of PLHA in different forums, and many participate in advocacy efforts in national and regional networks of PLHA.

PLHA involvement strengthens NGOs.

Data from the study highlight that PLHA involvement in service delivery and management helps to improve services and strengthen organizations by:

• Improving care and support services by making them more relevant and personalized.
   
• Increasing effectiveness of prevention activities by improving people’s perceptions of PLHA.
   
• Raising staff awareness of the issues from the PLHA perspective and promoting recognition by staff of the contributions PLHA can make.
   
• Increasing credibility of the organization and its services.
   
• Broadening activities to include advocacy for the rights of PLHA.

I came to realize that they were normal people just like any other human being. I could eat with them and share plates with them. Now I think I understand HIV much more than I did.
HIV-negative service provider, Kara Counselling and Training Trust, Zambia

Respondents also identified several detrimental effects that PLHA involvement can have on the organization. However, with adequate planning these negative repercussions can be reduced. For example, PLHA who are poorly trained may convey inaccurate information or impose their own solutions during counseling. When PLHA become ill and die, the NGO may experience disrupted service delivery and increased costs for training replacements, which may affect the sustainability of the organization itself. In some instances, visibility can lead to a kind of “stardom” for a few PLHA, which can create tensions within an organization. There is also the potential for conflict between PLHA and HIV-negative staff if the role and contribution of either are undervalued.

The socioeconomic context strongly influences PLHA involvement.

Any strategies to promote the greater involvement of PLHA in developing countries must take into account the social context, especially conditions of poverty, limited access to health care and treatment, gender inequality, and stigma and discrimination. With regard to poverty, most PLHA in the study are from low-income groups and need to use their available time to earn an income, therefore limiting their involvement on a voluntary basis. Poor health can limit involvement, although PLHA can remain involved even when they are sick, provided they are asked to do tasks that take into account their health needs and have access to treatment. PLHA, especially women and those from low-income groups, are less likely to have had access to education required for formal service delivery and program management. In some settings, illiteracy is a major barrier to involvement. Gender inequalities in access to education and services, domestic and childcare responsibilities, and financial dependence on men prevent many HIV-positive women from becoming involved in NGO activities.

If…transport is not provided, only those who are convinced come. When they know that there is some support they come. This is perhaps linked to the economic situation…there is extreme poverty, it is difficult.
Member of ALAVI, Burkina Faso

We are not so educated…sometimes I speak but I feel hesitant...I do not know how to speak.
Female PLHA beneficiary, CCDT, India

Fear of stigma and discrimination inhibits many PLHA from involvement, especially in NGOs perceived to be “PLHA organizations” and in roles with high visibility. This was particularly true in Burkina Faso and India, and in rural settings where fewer PLHA are visible. Rejection by family, friends, and the community due to stigma, as well as lack of knowledge and discrimination within health service and workplace settings, rein-forces fears about PLHA involvement. In Ecuador and Zambia, some PLHA informants described actual experiences of stigma and discrimination as a result of their visible involvement in NGOs.

In Africa…it isn’t easy. If people say you are involved in an organization of infected people, you know that you are labeled.
PLHA, Burkina Faso

PLHA involvement should not be equated with public disclosure and visibility.

In all four countries the study documented a range of NGO activities carried out by PLHA, not all of which entail disclosure within the organization or public visibility. For example, not all PLHA disclose their status to clients they counsel or to the community while doing outreach education. However, examples of PLHA who are visibly involved in providing personal testimonies that give a “human face” to the epidemic were found in each country, although few PLHA have gone public in the media. In Zambia, outreach education is the activity in which PLHA are most likely to be involved. In contrast, in the other three countries, PLHA involvement in community awareness-raising activities was limited to a few individuals. Most informants noted that some degree of visible PLHA involvement within NGOs increases awareness of PLHA perspectives and needs and contributes to better services. However, the involvement of PLHA should be matched with the degree of visibility with which they feel comfortable. PLHA should not be forced to disclose their HIV status and NGOs should guarantee the confidentiality of all service providers and beneficiaries.

After seeing us, their perception toward life changes and fear goes out of them. They start feeling that they can also change and live life.
HIV-positive peer counselor, Salvation Army, India

The PLHA are afraid of NGO members finding out their serostatus. They are afraid that if this happens they will be marginalized.
Service provider, AMMIE, Burkina Faso

To facilitate their involvement in the research process, study participants use photographs to discuss PLHA involvement in their programs' activities at a data analysis workshop in India. Photo credit: International HIV/AIDS Alliance and Horizons

Greater PLHA involvement requires creating a supportive NGO environment.

The researchers found that lack of adequate financial and material resources for remuneration of PLHA is a serious problem for NGOs in all four countries. But many NGOs also need to examine their own operations, policies, and attitudes if they want to increase PLHA involvement. Specific barriers include:

• Judgmental and paternalistic attitudes about PLHA and their involvement by professional health and social workers.

At this point of time, I don’t think that we will employ any positive person for childcare services.
NGO service provider, India

• Lack of institutional will and policies to create varied opportunities for PLHA to be involved.

HIV-positive patients are not involved in our organization because we don’t have well-defined plans for them.
HIV-negative service provider, Fundación Esperanza, Ecuador

• Lack of attention to gender and sexuality. The misperception that all PLHA have the same needs, regardless of gender or sexual orientation, may lead to one-size-fits-all designs for service provision that do not adequately serve women or MSM. Informants in Ecuador and India also cited the homophobic attitudes of some NGO staff, which prevent MSM from being involved and/or coming out as homosexual/bisexual men when they are involved.

When we have a meeting and mothers come with their children I realize the importance of having a place for children to play…and have fun, so their mothers can relax.
HIV-positive service provider, Dios, Vida y Esperanza, Ecuador

The study identified five categories of institutional factors that contribute to building a supportive environment for PLHA involvement: non-discriminatory staff attitudes, policies, and procedures; capacity building; psychological support; material support; and networking. These are further addressed in the recommendations section.