Involvement in NGO activities can have therapeutic effects for PLHA.

Although the impact of involvement on PLHA depends on the way they are involved in NGOs, study respondents overall reported a therapeutic effect of involvement for PLHA. This includes improved psychological health as a result of increased peer support and knowledge, and decreased isolation; improved physical health due to access to information about care, including where and how to access it, and in some cases, medical care and treatment; and increased income or access to material benefits as compensation for services. Some respondents in Zambia and Ecuador also cited less risky behavior, especially reductions in the number of sexual partners, and better integration in the family as members realize that PLHA can be productive and inform others in the family about HIV/AIDS.

The family wish that I help the young ones...so the family is very happy for me coming out in the open.
HIV-positive service provider, CHEP, Zambia

They know me at the hospital and the doors are always open for me. I get there and make sure they attend my patients.
HIV-positive counselor, Siempre Vida, Ecuador

The group has really boosted my morale…when we meet as a group we feel better because the way we relate to each other is like one big family. You become a pillar of strength for those who have just been tested.
PLHA self-help group participant, CHEP, Zambia

The benefit of associating with the agency is that today I know so much. If I had sat at home I wouldn’t have known so many things.
PLHA service provider, MNP+, India

Nonetheless, respondents in all four countries reported drawbacks to PLHA involvement, depending on the activities carried out and the level of visibility. For example, when delivering care and support services, the psychological health of asymptomatic PLHA can be impaired as a result of contact with those who are very sick. In Ecuador and Zambia, some PLHA reported personal experiences of stigma and discrimination because of their visible involvement in delivering services and/or managing the NGO. A few respondents from Burkina Faso and Zambia reported that occasionally community members accuse PLHA of pretending to be HIV-positive in order to obtain money from donors. NGOs need to be conscious of potential negative effects in order to take steps to minimize them.

I have suffered a lot of discrimination since I decided to come out in the open and especially since my decision to get involved. People really laughed at me. My friends stopped playing football with me…My parents-in-law succeeded in taking my wife away from me.
PLHA service provider, Salvation Army, Zambia

< Back | Key Findings (continued) >

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.

< Back | Key Findings (continued) >

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

< Back | Key Findings (continued) >

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

< Back | Key Findings (continued) >

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

Forming and sustaining support groups Support or self-help groups are an important component of psychological support to PLHA because they provide a non-discriminatory environment in which PLHA can share experiences and information. To enhance their sustainability, NGOs should: Help members develop common objectives and expectations.   Focus on involving participants in a similar geographical area, thus avoiding unsustainable transportation costs.   Clarify the roles and responsibilities of support group members and the NGO, including the decision-making process.   Develop mechanisms to cope with the death of members.   Include opportunities for skills building.

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.

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