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How to live positively: A practical manual for facilitating community action in HIV/AIDS affected areas
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Introduction
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More than 42 million men, women and children were estimated to be living with HIV by the end of 2002. Almost 30 million of these people are living in sub-Saharan Africa, according to UNAIDS (2002). Whereas much attention has been focussed on prevention of infection and treatment of patients with full-blown AIDS, little has been done to address the needs of apparently healthy people who are still in the early stages of this disease. As a result, people living with HIV in developing countries can only expect to survive for a maximum of five years, compared with those living in developed countries, whose life expectancy may be more than 20 years. This reduced life expectancy is having terrible consequences on young children who are being orphaned prematurely. These orphans are severely traumatised and, without guidance from a caring adult, are likely to grow up displaying anti-social behaviour, which will increase their vulnerability to HIV/AIDS.
Furthermore, in sub-Saharan Africa, the majority of people who are affected by, or infected with, HIV/AIDS are subsistence farmers, whose agricultural skills are vital to the continued survival of traditional life throughout the continent. Women, in particular, are the guardians of household food security. With their passing go thousands of years' worth of inherited knowledge on the production of food crops in Africa's diverse and often hostile environments.
Most people who are vulnerable to HIV/AIDS in Africa are lacking in formal education, and have limited access to hospitals and clinics. This participatory training manual aims to give these people a scientific explanation of the links between diet, the environment and immunity to disease. This information can be used to raise the health consciousness of the community, reduce their susceptibility to disease and reduce the risk of opportunistic infections. By facilitating a series of inter-active discussions and group exercises, conducted in a language that farmers can understand, it is hoped that workshop participants will be able to make crucial decisions, which will lead to improved health for all members of the family and lead to improved longevity for those who are living with HIV.
1.1 Background information for trainers
Almost everyone in sub-Saharan Africa is now either affected by or infected with HIV/AIDS:
- People are affected by HIV/AIDS either directly or indirectly. This could be because of the need to share household resources with orphans or someone who is dying of AIDS, or by being part of a community that is severely impacted by the pandemic.
- Infected people are HIV positive and in the early stages of the disease can pass it on unwittingly unless they have access to voluntary counselling and testing. These people are susceptible to opportunistic infections and will quickly develop full-blown AIDS, in the absence of basic health care, a balanced diet and emotional support. This situation puts a great strain on the household and their contribution to the well-being of the community (Gari, 2001)
In the absence of a national welfare system, the impacts of HIV/AIDS becomes increasingly severe in terms of increasing poverty and labour constraints, as time goes by. These impacts can be described as "moderate", where affected households are barely able to cope with caring for orphans or a sick relative, to "severe" where a single adult is taking responsibility for the orphans or sick relative and "very severe", where the carers are becoming sick and the surviving children begin fending for themselves (see Table 1). In Africa's rural areas, households that are severely impacted by HIV/AIDS suffer from food insecurity and extreme poverty, together with the stress associated with these conditions. Such households are no longer able to be self-reliant due to fatigue, reduced access to land, declining soil fertility, erosion of indigenous knowledge, lack of appropriate seed and an inability to generate income. Systems of good agricultural practise must be developed to address all these problems at no cost and without increasing labour requirements. By introducing the community to Positive Living it will be possible to dispel the feelings of hopelessness and fear that is prevalent in most HIV/AIDS-affected areas. Armed with the confidence that goes with Positive Living, the community will be empowered to plan and support activities to mitigate the impacts of this disease (see Table 2).
Table 1: Impacts of HIV/AIDS on African households in terms of increasing poverty and labour constraints, in the absence of a national social welfare system
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Community empowerment is an on-going process, which utilises participatory methods, such as Training for Transformation and Discovery Learning and enables local people to make informed choices for positive action to solve common problems. The empowerment process begins with meetings and workshops that, ideally, involve the whole community.
Guidelines for meetings with AIDS-affected communities
It is important to remember that people who are affected or infected by HIV/AIDS have little or no time to attend meetings due to more urgent domestic chores and are unlikely to take part in activities that require commitments to additional labour or costly inputs. In order to persuade these people to get involved, you, as the facilitator, should try to provide all participants with nutritious food during the course of the meetings. This should include their children and any dependants who may be languishing sick at home. Training workshops should aim to build confidence amongst the participants, whilst providing a safe environment in which everyone will be encouraged to speak out and share their ideas and problems. You should beware of topics that create stigma or cause blame and instead promote individual and collective responsibility towards reducing vulnerability to the disease. Exercises should be conducted amongst peer groups, such as orphaned children, young unmarried women and men, married women and men and widows, according to their vulnerability to HIV/AIDS. You may want to invite resource people from local organisations to present related topics, which may not be covered by this manual, but may be of particular interest to your community. If there is someone who is prepared to talk about Positive Living from personal experience, especially if s/he is HIV positive, it will send a powerful message of "hope" to the participants of your workshop.
Table 2: Minimum needs of households severely impacted by HIV/AIDS
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Who is Positive Living for?
Positive Living should be a way of life for everyone. Positive Living makes people less vulnerable to disease, particularly HIV/AIDS. It also helps people who are HIV positive to live longer, healthier, happier and productive lives. If you want to help the farmers in your community to overcome the fear and stigma associated with HIV/AIDS, then read on!
Information Box 1: Should people know their HIV/AIDS status before doing Positive Living?
No, this is not necessary, but if you do want to find out whether you are HIV positive or not, you should go to a clinic and have a blood test. If possible you should ask for VCT, this is Voluntary Counselling and Testing. Proper VCT clinics have well-trained staff who will be able to provide good advice, depending on the outcome of your test.
However, if you have had many sexual partners, a partner that you have ever had sex with has been unfaithful, is HIV positive or has died of AIDS then you may also be infected with the virus. If your baby is HIV positive or has died of AIDS then you are probably HIV positive. The first signs of this disease may not appear until several years after you first became infected. These signs are swollen glands (especially in the neck) facial herpes (cold sores) oral thrush, night sweats, tiredness and weight-loss. Some people are afraid to be tested or live too far away from a health clinic. In this case it is better to adopt Positive Living as a way of life so that you will remain healthy whatever your status.
Action planning for Positive Living
In areas of Africa where there is little or no government support for rural development, community action will be required to promote Positive Living amongst all vulnerable groups. This means that time should be made available at the end of each session to discuss issues that can be incorporated into a community action plan to allow participants to put into practise what they have learned during the workshop. This could include action to reduce the risk associated with some traditional practises, establishing a nutrition garden to feed orphans, writing a proposal to fund the purchase of nutrient supplements for vulnerable people or the construction of VIP toilets for everyone in the village. There is a series of simple exercises distributed throughout this manual to help with this process.
Many of the activities needed to address these issues will require the involvement of the whole community. This means that workshop participants should also discuss ways of involving the most marginalised people, including the orphans, the sick and the elderly in their action planning.
The information contained in this manual is under three main headings, namely: Reducing Vulnerability to HIV; Promoting Good Health and Preventing Disease. There are also more than 30 participatory "Discovery Learning" exercises to encourage participants to adopt a scientific approach to problem solving. When planning your workshop it is recommended that participants spend at least two days discussing each topic, including plenty of time for action planning. The afternoon of the last day should be reserved for revisiting the three action plans in order integrate future activities and plan the way forward (see Table 3).
Table 3: Suggested Workshop Timetable
| DAY ONE |
REDUCING VULNERABILITY TO HIV
Looking at vulnerability to HIV
Looking at ways of reducing vulnerability to HIV
Lunch
Taking responsibility
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Section 2  - 501Kb ~ 3 min (7 pages) |
| DAY TWO |
ACTION PLANNING TO REDUCE VULNERABILITY TO HIV
Reducing vulnerability to HIV within the family
Lunch
Reducing vulnerability to HIV within the community
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| DAY THREE |
PROMOTING GOOD HEALTH
What makes us healthy? Eating nutritious food
Lunch
Eating the right food for Positive Living
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Section 3 - 958Kb ~ 5 min (27 pages) |
| DAY FOUR |
ACTION PLANNING TO PROMOTE GOOD HEALTH
Calculating family nutrient requirements
Lunch
Crop planning
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| DAY FIVE |
PREVENTING DISEASE
Types of diseases
Lunch
Improving our natural defence to infectious diseases
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Section 4 - 1.4Mb ~ 8 min (31 pages) |
| DAY SIX |
ACTION PLANNING TO PREVENT DISEASES
Cleaning up the environment
Lunch
Planning the way forward
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