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2. The Alliance and community care and support
   Last updated: 29.06.02
Section 2. The Alliance and community care and support
From its inception in December 1993, the Alliance has been committed to supporting action in three broad areas of the response to HIV/AIDS: prevention, care and support and alleviation of impact of HIV. However, in the early years of development, while its framework emphasised all three, programme work focused almost exclusively on the area of prevention. In the initial stages the involvement in community care and support was modest. Over the past three years, this has grown to become an integral part of the Alliance’s work alongside continuing involvement in prevention activities.

The commitment to increase the Alliance’s involvement in care and support was developed as the scale of the HIV/AIDS pandemic grew and a clear gap emerged in the responses of many countries where the Alliance worked. Neither Governments nor NGOs were able to meet the growing needs of those who were ill, those living with HIV and those affected. This was felt most strongly at a community level, particularly in countries where a combination of low visibility of HIV/AIDS and little political commitment meant an acute lack of services for people in need. Alliance linking organisations, which were already supporting NGO efforts in prevention, recognised that it was critical to respond to existing and emerging needs for care and support. The linking organisations also recognised that they would have to plan for the future by building local capacity within individuals, organisations and sectors to respond to these needs. For the Alliance, this community-level reality reinforced a broader realisation of the importance of care and support within its mission.

In order to develop and define its mandate on community care and support, the Alliance undertook an examination of the following:

  • Definition of care and support: Using the existing care and support frameworks of the World Health Organisation (WHO) and the United Kingdom’s Department for International Development (DFID), a practical model of a comprehensive approach to care and support within a “continuum of care” was developed. This model included curative and palliative care, psychological support and material help for PLHA and for those affected. It also involved the support of people in the public, private and community sectors, family, friends, and professionals.


  • Rationale for supporting care and support: The Alliance’s existing organisational mission, vision and values emphasise attention to areas such as human rights and support to vulnerable populations. This, combined with the experiences of the Alliance and other organisations who participated in the workshops, such as the Salvation Army (Chikankata Hospital) in Zambia and the Red Cross in Thailand, compelled urgent attention to the area of care and support. Such experiences also demonstrated that something could be done – in terms of appropriate and high quality efforts having multiple, tangible benefits for individuals, families, communities and countries (see box). As a result, the Alliance’s community care and support initiatives focus on getting basic care and support services to the poorest people in communities, with the aim of developing cost effective, sustainable approaches to improve quality of life and increase life expectancy.


Increasingly the Alliance has been putting its policy commitment to community care and support into practice. On one level, this is reflected in the number of care and support initiatives supported by the Alliance which increased by 91% between 1995 and 1999. However the real story lies within the experiences and achievements in the Alliance’s key areas of work – mobilising action, enhancing quality, building capacity and sharing lessons learned.

A definition of the continuum of care, India

At an Alliance workshop, YRG Care in India concluded that:

“The continuum of care and support for PLHA begins with their first inquiry and carries on to meet as many of their needs as possible, finishing up with care and support to their family after death. The continuum is defined not only by the range of services it encompasses – counselling and information, clinical care and treatment, home care and family counselling – but also by the common quality that links together and strengthens service delivery. This quality comes from the attitudes and values of the carers and from the dignity and trust of the patients. The individual needs of patients and their families shape service delivery. As a result, the energy of caring is equally shared among care-givers, people with HIV, and their families and communities. Patients, family members, doctors, counsellors, nurses, nutritionists, educators, laboratory technicians, administrators and support staff can all contribute to care and support. Through contributing they are changed and the care and support they give to others is made more effective. The effects of HIV infection are different for each patient and each family, the continuum provides a supportive framework, in which these different needs can be recognised and addressed as they arise.”

(Reference: “Scaling up a Continuum of Care and Support Services: Workshop Agenda,” India, April 1999).

The purpose of care and support

At a plenary session at the “Community Lessons, Global Learning” workshop in Zambia, participants defined the purpose of care and support as:

“To improve the quality of life of persons living with and affected by HIV/AIDS.”

(Reference: Report of “Workshop on Sharing Lessons in Community Care and Support for People Living with and Affected by HIV/AIDS in Zambia,” Zambia, July 1999).

“Cost benefit” pyramid of HIV/AIDS care and support
At the “Community Lessons, Global Learning” Asia regional workshop in Thailand, participants used this tool to compare the cost and complexity of aspects of care and support against the number of people they could reach:

INPUT CHART

Cost and Anti-retroviral drugs
complexity
Treatment of opportunistic infections

Palliative and psycho-social care

Improved health care systems

Voluntary counselling and testing

Strengthening communities
to support PLHA

Prevention services
and human rights



Number of people served

(Reference: Report of “Mobilising Care, Community Support and the Involvement of People with HIV and AIDS in Asia”, Thailand, October 1998).

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.

To view the whole report follow this link

To download, complete with graphics, in pdf format (which requires Adobe Acrobat software to read it) follow this link (file size: 455 Kbytes).