Brief Profile of Community Involvement in HIV Prevention, Treatment and Care

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Addis Ababa, Ethiopia, 20 November 2006 -

1. Brief overview of community work on HIV/AIDS in the Region

Community involvement in care and support became paramount when the burden of HIV and AIDS overwhelmed the health systems in countries of the region. It is seen as a complement to or substitute for institutional long-term care, given the high bed occupancy rates of HIV/AIDS- related cases in countries of the region. For example, within the period 1999-2000, the rate of bed occupancy by HIV-related cases in countries of Southern Africa was estimated at 20-80%. In response, WHO/AFRO, with assistance from the World Bank, supported 12 countries in southern Africa to develop community home-based care (CHBC) programmes and services. Different models of care were supported: Faith-based, NGOs and government. Faith-based organizations and nongovernmental organizations, in partnership with governments, have championed the provision of home-based care services in the region.

As access to antiretroviral therapy (ART) and provision of treatment for opportunistic infections are increasing, there seems to be a paradigm shift from basic nursing and palliative care to ambulatory services in countries of southern Africa. The ARVs are having an impact on people’s health status. The apparent need at the moment is to provide treatment support and ensure referral for HIV testing and counseling.

HIV prevention interventions are also key elements now being considered within CHBC programmes and services. In some countries, universal precaution, post-exposure prophylaxis and positive prevention are becoming major components of community response. Civil society groups working at community level (eg. Networks of People Living with HIV/AIDS) have begun to sensitize their members and communities to HIV prevention, treatment, care and support.

Definition of CHBC

Community home-based care is defined as care provided to the terminally or chronically ill in the comfort of their homes or their familiar communities. Typically, it substitutes or complements long-term institutional care. Care in the home is primarily provided by family members and community volunteers. In the specific case of HIV and AIDS, support is even provided by people living with HIV and AIDS.

Strategies and principles of CHBC in treatment access

The major strategy of the CHBC programme is to build capacity of ministries of health and their partners to support affected communities including vulnerable groups of people living with HIV/AIDS to participate in treatment access and HIV prevention interventions.

There are two key guiding principles: (i) the centrality of people living with HIV/AIDS; (ii) government-NGO partnership building in the development of programmes for HIV prevention and treatment access.

Aspects of community HIV/AIDS interventions performed by community volunteers

Door-to-door sensitization.

  • Counseling and referral to HIV testing sites, e.g. in Swaziland and Zambia.
  • Basic Nursing Care.
  • Palliative Care.
  • ART literacy and preparedness performed by community volunteers and PLWHA.
  • Treatment support and adherence.

2. What has happened at the regional level

  • A consultative meeting held on development of a generic package for CHBC prior to the advent of ART. Agreement was reached on the key elements of CHBC including basic nursing care, palliative care, community and client education, HIV prevention, counseling, and social support.
  • Development of HIV prevention strategy which, in addition to other elements, includes community involvement and mobilization for HIV prevention.
  • Development of Regional Guidance Kit to support countries to develop national CHBC programmes including HIV prevention as an important element.
  • A consultative meeting held with countries, regional NGOs and FBOs, at the advent of ART, to agree on a framework for supporting government-led community interventions for scaling up HIV prevention, treatment, care and support. Agreement was reached on the framework whose elements include support for ART service delivery, role of the community and PLWHA organizations in HIV prevention, treatment preparedness and literacy.
  • Collaboration with WHO headquarters, the International Federation of the Red Cross and Southern Africa HIV and AIDS Information Dissemination Service (SAfAIDS) to develop a training package focusing on community involvement in HIV prevention, treatment and care. The package was launched in September 2006.

3. Developments at country level

  • Using the Regional Guidance Kit, some countries have developed guidelines on CHBC, which also address HIV prevention ( Namibia, Swaziland, Gambia, Lesotho Swaziland, Malawi, Kenya, Botswana, etc.).
  • Some countries have begun to link ART with community home-based care services, although very minimally. (e.g. Swaziland, Burundi Burkina Faso, Botswana, Cameroon, Cote d’Ivoire. CHBC volunteers refer patients to VCT centres for HIV testing and provide information on HIV prevention.
  • Countries have been supported to develop guidelines for HIV prevention in the work place, with elements of community participation (e.g. Tanzania, Zambia).
  • A few countries have established community-based support groups of PLWHA. These groups are supervised by the community clinic and provide services in the areas of treatment, support and promotion of positive prevention among PLWHA.
  • Countries have been supported to adapt the generic WHO/IFRC/SAfAIDS training package for community volunteers on HIV prevention, treatment, care and support in order to accelerate community and PLWHA involvement in ART literacy, preparedness and support.
  • Some countries have empowered community volunteers to perform HIV testing and counseling (HTC) as a means of accelerating HIV prevention and care interventions ( Lesotho, Zambia).
  • Community day care centres have been established to provide comprehensive services, e.g. Mozambique , South Africa, Zambia.

4. Best practices observed in a few countries:

  • CHBC practices in the region are poorly documented. Even so, the following observations have been made:
  • CHBC services are used as entry points for HIV testing and counseling. Sick clients seen by volunteers, but not yet tested for HIV, are referred to the HTC centre for testing. In countries where this model is used by FBOs and NGOs a number of people have been tested for HIV and the number adhering to treatment regimen is quite high (Swaziland, Zimbabwe, Zambia).
  • PLWHA are involved in community-based prevention, treatment, care and support interventions, thereby contributing to high levels of treatment adherence.
  • Ethiopia has launched a community-centred social mobilization strategy. This strategy emphasizes community discussion of the issues of HIV/AIDS prevention, treatment and care.
  • Lesotho has launched a “Know Your Status campaign” which involves social mobilization at community level, with the participation of the communities themselves, particularly the youth and women associations. This initiative is being considered for replication in other countries.

5. Challenges

  • Development of a programmatic approach to community interventions so that the community’s role in the formal health system is identified and supported and that elements of their roles are captured in the health management information systems of countries.
  • Development of standards for community-based prevention, treatment, care and support.
  • Sustainability of voluntarism: issues of remuneration remain unsolved in many countries. As a result, turnover rates of volunteers is very high.
  • Stigma is still high in most communities. As a result, support to PLWHA by community-based care providers in some countries is very minimal.
  • Many countries lack training materials for community-based HIV prevention, treatment, care and support. As a result, the quality of information is poor.

6. Way Forward

  • Supporting countries to develop policies, guidelines, standards and training materials for community HIV prevention, treatment, care and support.
  • Supporting countries to adapt the WHO/IFRC training package so that the quality of information and the skills of volunteers can be improved.

7. Key questions

  • How can countries be supported to develop national indicators reflecting the contributions and outcomes of community participation in HIV prevention, treatment, care and support? How can MOH and civil society in countries be supported to document and disseminate their best practices?
  • How can governments and partners be supported to come up with a scheme on remuneration of community volunteers? How can lessons learned from other partners be documented so that other countries can learn from their experiences?
  • How can WHO and partners support countries to develop massive but simple programmes for training families and communities in prevention and care so that the community will have adequate numbers of people knowledgeable in HIV prevention, treatment and care?
  • How can WHO and partners support national adaptation of the generic WHO/IFRC/SAfAIDS training package for community volunteers? How can roles and responsibilities be apportioned in this regard?