Controlling HIV/AIDS in II Ngwesi, Kenya

In the conservative Maasai community of Il Ngwesi, talking about sex is no longer taboo, writes KATHARINE HAGERMAN. How come that in this Maasai area located about 300 km northeast of Nairobi, traditional leaders, women and youth have started taking control of HIV/AIDS? The answer lies with ‘Olosho le’maa ematonyok araae bittia’, an innovative community-led Il Ngwesi Afya programme, which translates as, ‘Maasai people coming together to fight HIV/AIDS’. 
  
Culture and environment

Il Ngwesi is remote. The population, who practise traditional Maasai culture, are socially, politically and economically marginalised from mainstream society. Nearly 9 500 people live in a 50 km2 area around a collectively owned group ranch. Official leadership is all male, most families are polygamous, and women and youth have less power in decisions on household matters than older men. Strong cultural traditions make talking about sexual health and HIV between ages and genders taboo.

   
    Young warriors, called moraans, participating in traditional dance
 

Il Ngwesi is remote. The population, who practise traditional Maasai culture, are socially, politically and economically marginalised from mainstream society. Nearly 9 500 people live in a 50 km2 area around a collectively owned group ranch. Official leadership is all male, most families are polygamous, and women and youth have less power in decisions on household matters than older men. Strong cultural traditions make talking about sexual health and HIV between ages and genders taboo.

Rising populations and environmental degradation place pressures on traditional pastoral livelihoods. Poverty and illiteracy rates are high; there are no developed roads in and out of the area and little access to water or markets for commercial goods. There are two partially equipped nursing stations but little access to HIV/AIDS prevention or treatment. All of this paints a bleakly familiar picture common to rural communities across the subcontinent. Socioeconomic, cultural, environmental and political inequalities increase the risk and vulnerability of marginalised populations.

But when it comes to HIV/AIDS, Il Ngwesi has a different story to tell.

All of this paints a bleakly familiar picture common to rural communities across the subcontinent. Socio-economic, cultural, environmental and political inequalities increase the risk and vulnerability of marginalised populations.

In 2006, HIV/AIDS knowledge was low, stigma was pervasive, few people knew about HIV testing, fewer still had been tested and no one was living openly with HIV. A widespread belief existed that HIV/AIDS was a ‘town’ disease and didn’t affect the community. Four years later,  nearly 72% of the general population has received HIV counselling at least once; 56% have used HIV testing services within the community (31% more than once); and over 200 volunteers have been trained as HIV/AIDS peer educators. Furthermore, community members were employed as project coordinators and HIV counsellors; an anti-stigma declaration was put up in public spaces; young men talked about HIV/AIDS with their friends over beer; and a mobile primary healthcare and HIV testing unit regularly visited the most remote corners of the region.

How, in light of deeply rooted social norms, has HIV taken precedence and caused a shift in the ability of people to talk about HIV prevention across gender and age groups? 

   
  Female condom demonstration by community volunteer to a
women’s group.

We were in a meeting and an elder said, ‘According to Maasai culture, the only time you can talk sexual matters to you daughter is when she is getting married. When you tell her, you will go to this man, and I want this man to be your husband and no other husband. So they said, the second day should be talking about HIV. If my daughter dies of AIDS I will cry. What is the need of me waiting until I cry, rather than saying today we’re going to speak about HIV openly, because I want you to be safe.’ So, I also got that concept. I can talk to people about HIV/AIDS, we share together, we talk about it freely, we believe if you are my daughter or whatever you are, if I love you, then I should tell you (interview participant).

Community ownership the key to success

Locally, there is a really strong pride that we were doing it ourselves, the idea that it was ‘our project’ was critical to making it work (nterview participant).

The programme enabled community members to address the HIV/AIDS risks they face. With a strong body of committed community members and partnering stakeholders who supported the idea that local people knew the solutions to their problems, an HIV/AIDS intervention that addressed the specific needs of this community has been developed. And it’s working.

How and why the programme works

A recent participatory study evaluated the impacts of the Il Ngwesi Afya programme on a comprehensive set of indicators related to ‘getting HIV/AIDS under control’. Additionally, by asking what contributed to programme success, the study articulated a model of how to develop a ‘sense of community ownership’.

This study was undertaken in partnership with stakeholders, including community leaders, programme staff and volunteers, the Institute of Cultural Affairs (ICA) Canada and the University of Toronto. The data were triangulated: a community-wide survey was completed with 100 households, in-depth interviews were held with 15 stakeholders and ten focus groups were held with staff and volunteers.

The programme aimed to control HIV/AIDS in Il Ngwesi and to build a model to inform the development of community-led HIV/AIDS initiatives that were sustainable, comprehensive and enhanced regional and national strategies to make a lasting impact in communities underserved by government and other agencies. Activities were organised into four main areas: mobilisation, education and awareness; access to core services (PMTCT, MVCT, Care and Follow-up); community building and participation; and sustainability, replication and expansion.

By developing this ‘sense of community ownership’, local people addressed their own needs, resulting in an effective and sustainable intervention.

Indicators to measure success were drawn from the relevant literature and existing programme models. They provided a comprehensive assessment of the social and psychosocial determinants of ‘getting HIV/AIDS under control’ in Il Ngwesi, both at individual and collective levels.

By involving community members in the programme design, education strategies included cultural traditions and values. A ‘sense of community ownership’ decreased stigma and encouraged widespread participation in programme activities and a spectrum of volunteers to become peer educators. This increased the reach and uptake of HIV education and core services to the community.

By developing this ‘sense of community ownership’, local people addressed their own needs, resulting in an effective and sustainable intervention.

The lifestyle of the people and culture must be understood. Because whenever you take new things, which might be conflicting with culture, you’ll always be met with resistance. And they’ll be saying, ‘this is their project, not ours’. So, project initiators must understand people’s lives, their needs, and that projects must be planned with the people who it is going to affect. People actually have solutions to their problems, and when they provide the solutions, they will take it up themselves, not the solutions being given by others ( interview participant).

   
  Volunteer peer educator theatre troupe performs educational plays about risk behaviours to
community members.
Implications for application

The lessons learned from the Il Ngwesi experience can inform public health initiatives in communities across the subcontinent. Further critical study is needed to assess how the ‘Il Ngwesi approach’ could be applied to different settings. For example, the ‘pre-existing conditions’ and the involvement of traditional leaders were integral to the programme’s success in Il Ngwesi. These indicators may look different in new contexts, and should be assessed and included in strategies for working with local communities. This approach to community-led development fosters broader social change by strengthening solidarity or ‘collective efficacy’ (the idea that ‘we can’) to fight HIV/AIDS and by addressing its broader determinants:

In meetings, people use our example ‘yeah we can do it like the HIV/AIDS programme’ – people think anything can be possible, if talking of this life-taking disease is possible, why not other things like creating water, which is a positive thing from the beginning? (Interview participant)

Katharine Hagerman, research associate, HIV/AIDS, STIs and TB research programme, HSRC.