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7. Recommendations on Care, Involvement and Action
   Last updated: 29.06.02
Section 7: Recommendations
Based upon the lessons shared within “Community Lessons, Global Learning” and its other experiences to date, the Alliance promotes the following broad recommendations in relation to community care and support work:

Recommendations for donors and policy makers

The Alliance recommends that donors and policy makers should:

  • Recognise that, while important, drug treatments are only one component of HIV/AIDS care and support in developing countries. High quality, low cost care and support reaches the greatest number of people, increases quality of life and prolongs the lives of people with HIV. Improving access to complex, expensive treatments must not jeopardise more readily achievable goals such as the immediate provision of low cost care and support.


  • Play a lead role in fostering national dialogue and partnerships on care and support. For example, by bringing different sectors together to share experiences, and by facilitating access to key decision makers for NGOs.


  • Actively and formally promote the involvement of PLHA – not just in words, but through official structures and measures. For example, by assigning seats on National AIDS Committees to PLHA or introducing anti-discrimination legislation.


  • Responsibly and responsively collaborate with NGOs around sustainability of community care and support. For example, modest funding that is secured for multiple years is often more useful to local groups than a high level of funding on a “one off” basis.


  • Continue to support operations research initiatives on key areas that have a demonstrable, practical benefit for community care and support initiatives. Future priorities should include:

  • Addressing stigma and discrimination.

  • Scaling up community based care and support.


Recommendations for NGO support programmes

The Alliance recommends that NGO support programmes should:

  • Help NGOs to develop realistic strategies about what they can and cannot do. This should involve encouraging NGOs to prioritise basic, low cost, psycho-social support above providing more complex responses, such as drug therapies. The latter should only be carried out after very careful planning, and should only be a complement to – and never instead of - basic care and support services.


  • Complement the above by promoting a continuum of care and support – with NGOs actively complementing the efforts of other sectors, and working together to respond to the full range of needs of PLHA.


  • Insist that partner NGOs access appropriate expertise for their care and support initiatives. For example, if supporting income generating activities, they should be coupled with an organisation with experience in micro credit. If providing treatment, they should work with qualified medical professionals.


  • Ensure workshops and other forms of intensive technical support are complemented by follow-up support. This is particularly the case for NGOs new to care and support which may initially find the work challenging and overwhelming.


  • Play a lead role in identifying and nurturing care and support projects that have the potential to be scaled-up. Even if they are not able to implement scale-up themselves, NGO support programmes have a vital role to play in documenting and sharing models – so that scale-up can be carried out by others.


  • Monitoring should be a priority area of technical support for NGOs in care and support. For example, NGO support programmes can help NGOs to collect baseline data and to work with PLHA and community members to develop appropriate indicators and gather relevant data.


  • NGO support programmes need to measure their own success - in terms of building the capacity of NGOs in care and support. For example, in addition to recording the number of people involved in efforts such as workshops, they need to assess areas such as how their cumulative work has enhanced the national response to care and support.


Why care, involvement and action matters
“NGOs are the ones based in the community. They know about HIV because many have learned through the experience of living with HIV. We mustn’t lose this experience. If we don’t get together in groups and find help and medicines, we don’t stand a chance.”
Member of PLHA self-help group, Ecuador

“Our staff find out about people living with HIV/AIDS from their families or from people like the Village Chief. These people want staff to go and visit the person with HIV/AIDS because the person feels hopeless. The organisation is trusted by the community. The people can see the heart of the organisation in the behaviour and attitudes of the staff.”
NGO representative, Cambodia

“Before, I felt that it would be better for me to die than to be alive. But with the support and advice of the organisation, I’ve regained the courage to live.”
PLHA mother of two, ALAVI, Burkina Faso

Source: Care, Involvement and Action
This is an extract from Care, Involvement and Action: Mobilising and supporting community responses to HIV/AIDS care and support in developing countries, published by the International HIV/AIDS Alliance in July 2000.

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