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6. Making a difference
   Last updated: 29.06.02
Assessing Needs
Care initiatives should be based on participatory assessments of the needs and capacities of PLHA and communities. Such assessments should include all stakeholders, with PLHA as central participants.

Care and support initiatives need to be built on an assessment of the real needs of PLHA, their families and their communities. While such assessments should look at the comprehensive care and support needs of PLHA, they should avoid the danger of creating false expectations of what NGOs can offer. The Alliance’s experience of participatory community assessments in developing prevention activities serves as a basis for evolving methodologies for assessment of care and support needs.

At the “Community Lessons, Global Learning” workshop in Ecuador, the participants identified needs assessment as one of the most important tools in responding at community level:

“Participatory action begins with a needs assessment which can have various forms (such as evaluative studies, interviews, site visits, and focus groups) but which is an essential element of developing and running a project. It allows one to know the target audience better and helps to develop trust and build confidence (and often a level of ownership of the project).” (Report of the 2nd National Meeting of HIV/AIDS Organisations in Ecuador).

The Alliance developed experience in this through its support for over 180 participatory community assessments for prevention initiatives in Africa, Asia and Latin America. In Cambodia, KHANA has supported over 35 prevention orientated assessments and is now helping NGOs to appraise needs and resources for care and support of children affected by AIDS. The appraisal of children’s needs formed the basis of two KHANA workshops about how to develop strategies for integrating services for children affected by HIV/AIDS into on-going HIV prevention and care and support projects.

Examples of tools for appraisal of children affected by HIV/AIDS, Cambodia
Tool: Vulnerability drawing and story telling

Activity: Participants draw a picture of a “vulnerable” and “non-vulnerable” child of different ages and make up a story about each. Discussion is held about the comparisons – to draw out the factors of vulnerability and resilience. Then, participants add HIV/AIDS to both stories. Discussion then focuses on the impact of HIV/AIDS on the vulnerability factors. Participants make a summary – by defining issues for children affected by HIV/AIDS, including what helps minimise the impact of HIV/AIDS for children and what hinders this.

Tool: Network diagram of AIDS-related life events

Activity: Participants make a network diagram showing the links between AIDS-related life events (such as parents falling sick and dying) and their impact on the family. When the diagram is finished, participants indicate the action necessary to minimise negative impact on affected children at each of the network diagram nodes. Discussion draws out who could carry out the action and what would be the most effective strategy to use in each case.

(Reference: “Children Affected by AIDS: Appraisal of Needs and Resources in Cambodia, Draft Appraisal Design, KHANA, Cambodia, February 2000).

Involvement of a wide range of stakeholders
Effective responses to HIV require the involvement of a wide range of stakeholders at many levels. NGOs can often facilitate a neutral environment for a variety of stakeholders to meet and talk.

Stakeholders at national level may come from a variety of different backgrounds. Where NGOs can facilitate discussion at this level, joint strategic planning taking into account stakeholders’ different priorities becomes a possibility.

One of the most significant achievements shared by participants at the “Community Lessons, Global Learning” workshops was the mobilisation of action on care and support at a national level. In countries such as Uganda and Thailand, the importance and concrete impact of co-ordinated national responses to HIV/AIDS have been well documented. However, when many Alliance linking organisations began their care work, they found that their efforts were occurring in a near vacuum, with minimum support in terms of policy environment and infrastructure. Despite innovative efforts, it was clear that NGOs could only ever have limited efficacy and impact without the collaboration and scale-up that could be offered by national stakeholders.

In Ecuador, COMUNIDEC, the Alliance linking organisation, decided to mobilise national action both for programmatic reasons (to strengthen existing responses and mobilise sectors) and for political reasons (to foster solidarity and mobilise resources). In practice, this process combined a variety of strategies including national workshops, meetings with government officials, and funding projects. Meanwhile, in Senegal, ANCS became increasingly concerned about the lack of attention being given to strategies and policies for care and support by both NGOs and the government, compared to the attention being paid to prevention activities. They saw that, although prevalence in Senegal was relatively low, the needs of PLHA were increasing. Nevertheless care initiatives remained limited and poorly organised. As a response, ANCS co-ordinated Senegal’s first ever National Forum on Care and Support. This brought together senior representatives of NGOs, PLHA, government, donors and health professionals. Four major themes were covered – including the place of care and support in national HIV/AIDS policies – and a number of recommendations were made, with all participants held accountable for their implementation.

Since then, ANCS and the Government of Senegal have gone on to co-ordinate two further National Fora, including one in 1999 as part of “Community Lessons, Global Learning” project. These have focused on different issues, including the involvement of PLHA, the re-integration of PLHA into community life and an overall analysis of the strengths and weaknesses of the national response (see box). One of the most tangible results has been the creation of local “cellules” – or “solidarity networks” (see Section 4) – which have decentralised action to beyond the capital.

At the local and organisational level, stakeholders include individuals with a particular interest in an organisation or a particular skill to offer. Individuals keep the motivation and momentum of organisations going and individuals within the community are a key part of starting and maintaining a response. They can be people who are themselves infected or affected, community leaders or health workers. Once support services are established, the quality of staff and their relationship with the people they are caring for is essential to sustainability and success.

Local leaders are an essential part of making home based care and support acceptable and reducing stigma and discrimination. Local leaders should be asked for their support early in the development of any programme, and community volunteers need to have a continuing role in communication as the project is developed. When families and communities have accurate and trusted information about HIV they are often willing to provide a supportive environment for community members who have HIV.

Strengths of existing national response, Senegal
During the “Community Lessons, Global Learning” workshop in Senegal, participants analysed the strengths and weaknesses of the current national response to care:

Strengths

1. Community mobilisation:
  • Quality and quantity of volunteers.

  • Involvement of PLHA.

  • Partnerships with the medical sector.

  • Development of resources.


2. Comprehensive care and support:
  • Psycho-social support as well as medical.

  • Projects for the socio-economic re-integration of PLHA.

  • Care of those affected.


3. Creative responses:
  • Advocacy.

  • Awareness raising and training programmes.

  • Income generating activities.


Weaknesses

1. Management:
  • Low capacity in administration.

  • Difficulties in managing clients.

  • Dissemination of information within organisations.

  • Lack of expertise in certain sectors, and need for training.


2. Material and financial constraints:
  • Lack of tools.

  • Lack of transport systems.

  • Access to treatment.

  • Funding for projects.


3. Inability to know the limits:
  • Financial limits.

  • Human limits.

  • Physical limits.


Involving volunteers
Many programmes depend on volunteers. Training and support of volunteers is essential, particularly when volunteers are themselves living with HIV and may need to balance self-help with supporting others.

Many organisations depend on the involvement of volunteers. NGOs in turn need to provide training, support and information to their volunteers to ensure effective participation. A session on volunteers at the Senegal workshop concluded “You need to really get to know volunteers from the very beginning of their involvement and to help them find a place within the organisation that suits their interests, skills and availability”.

At the workshop in Senegal, NGOs from both the host country and Burkina Faso exchanged their experiences of working with volunteers at a community level. SIDA Service, based in Dakar, Senegal, shared their experiences of mobilising and training over 100 active volunteers (see box). REVS+, one of the Burkinabé groups, described their work with PLHA volunteers whom they actively recruit to become involved in self-help, medical, psychological and social support services. The volunteers are required to have basic knowledge about HIV/AIDS, and do not receive any payment. The NGO has found that their formal organisational structure – 40% of members are living with HIV, and the executive office is composed of 50% PLHA – has significantly helped with the recruitment of PLHA volunteers and led to their active involvement in both decision making and the implementation of activities. Their slogan is: “Se soutenir pour etre soutenu” (“support and be supported”).

Mobilising and training volunteers, Senegal
SIDA Service has over 100 active volunteers, including teachers, nuns, lawyers, social workers and young people. This multi-disciplinary expertise allows much of their initial and on-going training – in areas such as group dynamics – to be carried out “in house” by the volunteers themselves. Their activities include hospital and home visits, counselling, spiritual support and practical support - such as food, clothing and income generating activities. A few of them are considered permanent and full time, and receive small honoraria. But the majority work for free. The NGO provides back up through access to a documentation centre and “tailor made” resources, such as a SIDA Service counselling guide.

Volunteers have enabled SIDA Service to respond to the needs of PLHA on a scale way beyond that possible with just staff members. However, they have also encountered a number of challenges, including: reconciling PLHAs’ wishes for confidentiality with mobilising community volunteers; managing volunteer rotas and coping with their lack of availability at the times when they are most needed; and supporting people to cope with the challenges of their work. As one volunteer says: “Home care visits are often much more difficult than they seem. We don’t have a car when we need to travel far, the family is often not aware of the situation, and, when they are, they don’t want the neighbours to know.”

Involving PLHA
The empowerment of PLHA, getting HIV/AIDS on to the agenda of policy makers and the general public, reducing stigma and discrimination and providing psycho-social support can all be benefits of involving PLHA in the provision of care and support. But it is essential to ensure that such involvement does not expose people to stigma and discrimination and that appropriate and continuing support is available to them.

Bringing PLHA together helps to build self-esteem, mobilise communities and enhance advocacy. Self help groups have a significant role to play in developing care and support responses and particularly in fighting social isolation and providing psychological support. Stigma and discrimination are a reality everywhere and while people living with HIV have a key role to play in reducing this, they are also vulnerable to its effects. Confidentiality is central, and people need to be sufficiently supported if they are considering becoming involved in activities around care and support. PLHA should not be pressured to give public testimonies or to compromise their privacy.

Self help groups can encourage PLHA to play a fuller role in the community. As a means of strengthening community responses to both care and prevention, the Alliance has provided technical support to promote the involvement of PLHA. In practice, this has involved supporting partners to develop concrete strategies and learn for themselves about the benefits and challenges of PLHA involvement.

In many countries, involving PLHA has been a catalyst in encouraging Alliance linking organisations to get involved in care and support efforts. COMUNIDEC, the Alliance linking organisation in Ecuador, shared some of the key results of involving PLHA at the “Community Lessons, Global Learning” workshop in Zambia.

“Upgrading COMUNIDEC’s skills, in order to be able to provide adequate technical support to NGOs and CBOs in care and support of PLHAs, started by providing direct contact and exposure to the human dilemmas surrounding HIV and AIDS. The conviction that PLHA play an essential role in providing a real life dimension to the epidemic strengthened COMUNIDEC’s capacity to advocate for the creation of opportunities to ensure the participation of PLHAs and their integration in the planning and delivery of services with its partner organisations.”

For ANCS in Senegal, the involvement of PLHA was a “corporate” priority from the very beginning. ANCS considers PLHA in its hiring policy, and three out of 11 places on their board are allocated to PLHA.

With some NGOs, the involvement of individual PLHA can occur gradually within the context of on-going programme work. This can be seen with WOMEN (Women’s Organisation for Modern Economy and Nursing) – a community development and human rights NGO involved in home based care in Cambodia. One of their volunteers – a woman living with HIV – became involved following a request from her counsellor at the hospital. She believes that she now plays an important role “giving a face to AIDS” and showing people that the disease is a reality in her country.

Lessons learned about involvement of PLHA work
  • Involvement of PLHA facilitates psychological support to clients, and builds self-esteem among PLHA.

  • Visibility of PLHA magnifies the impact of prevention interventions and reduces stigma in the community.

  • Technical know-how and a sensitive approach to involvement are vital.

  • Succession planning (such as in self-help groups) helps to ensure on-going involvement of PLHA and avoid crises.

  • Involvement in income generating activities can facilitate acceptance of PLHA – as they provide opportunities for them to be self-sufficient.

  • Involvement in peer counselling can increase the numbers seeking services – by helping people to feel less fearful.


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


"The experience of PLHA is very inspiring. Before, we said that we were counselling PLHA, but others did not believe us. Then a counsellor living with HIV came and worked with us. He provided an example, and things began to change. People began to come forward and seek support. Now, our counselling sessions are full.”

Participant in the Zambia workshop.

The next steps
The “Community Lessons, Global Learning” programme for 1999 brought together and shared many valuable experiences in developing appropriate responses to the needs of communities and the NGOs working with them. The lessons learned this year on care and support will be integrated into the Alliance’s work on care and support, and shared amongst a broad range of stakeholders.

The next challenge is to respond to the rapidly growing demand for care and support and prevention. Support and services must reach as many people in as many places as possible. Scaling up NGO work in these areas – i.e. increasing coverage, maintaining impact and ensuring sustainability – will be the focus of the third and final year of the “Community Lessons, Global Learning” programme.

These issues will be explored during the workshops planned for the next year, building on the shared experiences and lessons learned about the development of effective prevention, care and support at community level which have been identified in the first two years of the project.

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).