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5. Enhancing the quality of community care and support
   Last updated: 29.06.02
Mobilising care and support

NGOs can play a critical role as agents for mobilising other NGOs whom may be reluctant to become involved in care and support.

Burkina Faso is experiencing the second highest HIV prevalence in West Africa, with around 10% of adults living with HIV/AIDS. At the “Community Lessons, Global Learning” workshop in Senegal a representative from IPC, the Alliance linking organisation in Burkina Faso, shared experiences in moving from prevention efforts to care and support activities. In 1996, they recognised the need to mobilise action on care and support and, as a first step, developed their own policy on what kind of initiatives to encourage. They emphasised comprehensive, community based models driven by a volunteer ethic and linking prevention with care and support. IPC then mobilised four pilot initiatives – by offering a combination of funding and intensive, tailor-made technical support. Three of the NGOs were urban and one rural, and all had established relationships with their communities through development work. In the case of La Bergerie, IPC built on both their organisational experiences in prevention and their personal experiences as health workers already in contact with PLHA.

In Cambodia, one mobilisation strategy by KHANA has been to hold a care and support workshop for 15 NGOs implementing prevention projects. The workshop was highly experiential, using participatory tools and visits to local services to help participants to “internalise” the issues. Feedback included the following comment: “I learned in the hospice that PLHA want honour like everyone else” and “I saw that that needs of PLHA are good care and good motivation in the community.” The workshop helped NGOs to reflect on the growing care and support needs in their communities, and to take the first steps in both building on their existing work and identifying new strategies. For example, Phok Bun Roeun of the Cambodian Children Against Starvation and Violence Association – an NGO focusing on work with young people – remarked: “We have a plan to provide home care in Prey Veng. We are just starting to learn about this through this KHANA workshop and to make contact with the local hospital. CCASVA is starting to research about home care because there are no other organisations working in HIV/AIDS. There are people in Prey Veng who are dying of AIDS so CCASVA is trying hard to design a programme that will meet their needs.”

Mobilising care and support in Burkina Faso
“IPC’s involvement in mobilising groups to do care and support work has shown that properly supported local NGOs can be the ideal conduits for effective and low cost community care.”
Marie Rose Sawadogo, Initiative Privée et Communautaire, Burkina Faso

"In Burkina Faso, IPC has become an essential partner in the promotion of community care and support, and the involvement of people living with HIV/AIDS. Important and unique lessons have been learned which are crucial for the development of comprehensive care programmes in other countries in the Region."
Dr Eric van Praag, World Health Organisation

Minimising stigma and discrimination
Stigma and discrimination are key barriers to accessing care and support. NGOs can be powerful agents of change in reducing stigma and discrimination through the provision of community care and support, ensuring the inclusion of PLHA and promoting a non-discriminatory environment.
How to address stigma and discrimination was a key area of concern during all the “Community Lessons, Global Learning” workshops. It was recognised that within a discriminatory environment, people living with HIV are unlikely to thrive and their families face almost insurmountable obstacles in trying to support them. An example of how giving care and support can in itself reduce stigma and discrimination was offered by health visitors of Sangram – an NGO working with sex workers in rural India. As one villager said: “We didn’t want to help the people with AIDS because we were afraid, but when we saw strangers doing what we should have done ourselves we were ashamed. Now we help each other.”

The reality of stigma and discrimination can be intensely debilitating for individuals, their families, organisations and the community alike. One NGO member shared an experience from his organisation’s work in providing care and support: “People are afraid that if they have HIV/AIDS their families will discriminate against them. They are afraid that if they die and it is known that they died from AIDS, people will not attend the funeral. They are afraid that their family honour will be lost. The reasons for discrimination are the idea that HIV/AIDS is the result of the behaviour – or “bad history” – of the person infected, and a lack of clear knowledge of how HIV/AIDS is transmitted. For example … five children were orphaned when their parents died from AIDS and went to live with their grandmother. People would not buy the produce from her or allow their children to play with the orphaned children for fear of infection.”

Participants in the workshops recognised that the primary aim of reducing stigma and discrimination would be to improve the psychological and physical well-being of PLHA. But they also saw the practical and political benefits for their own work in facilitating a supportive environment.

The reality of stigma and discrimination, India
“Ravi* – a 30 year old fisherman from a small village, and living with HIV/AIDS – says “Doctors are there [at the hospital], but, if you’re HIV positive, they don’t treat you well and don’t even touch you.”

“Sima* is a 35 year old woman who has two daughters. She lost her husband just one week back. Once her husband died, the in-laws threw them out and blamed Sima for their son’s HIV status. Her husband owned some property but her in-laws refused to give [it to her]. Now, she and her two daughters are living with her younger brother. Though Sima’s brother is good to them, his wife doesn’t want to keep them in her house. Sima tried hard to get her daughter married to someone as soon as possible since she thinks her future is at stake. But her daughter is just 14 years old and wants to continue her studies. But Sima is helpless because she and her daughter live at her brother’s mercy.”

(Reference: Extracts from report of Needs Assessments for Scaling up the Continuum of Care, Kakkinada, Andhra Pradesh, India, 1999).
* names are changed

Prevention and care
“Prevention and care and support fit together. Prevention activities are needed to help overcome discrimination. Our organisation is known and trusted in the communities where it works as a result of the attitudes and behaviour of the staff. We are therefore in a position to address sensitive subjects such as discrimination against PLHA.”
NGO representative, Asia workshop

Impact on household income

Income generating activities help to provide a means of economic support for PLHA and form an essential component of the comprehensive care and support continuum. In order to undertake income generating activities successfully, NGOs require support in planning, management and technical expertise.

HIV/AIDS is acknowledged to have a disproportionate effect on the poorest and most vulnerable members of society. However, even for people with incomes and high social status, a diagnosis of living with HIV/AIDS can lead to serious consequences – such as loss of employment of the family “breadwinner.” Adequate income is essential for people with HIV to be able to maintain their health, self-esteem and overall quality of life. Therefore, the Alliance recognises the need to consider economic and material support as a key component of a package of comprehensive care and support. In practice, this support has usually been at a very basic level. In Burkina Faso and Cambodia, home based care teams try at least to provide free “staple” materials such as food, soap and blankets to the most needy PLHA and their families.

In other instances, technical support has focused on economic support often in the form of income generation activities. One way of doing this in a sustainable manner is to link such income generating schemes to local NGOs with established micro-credit programmes. When this works, the effects include the encouragement of acceptance of people with HIV through reducing stigma and discrimination and providing an entry point for behaviour change. To maximise these effects, technical support for such schemes needs to include training in inter-personal as well as business skills.

At the “Community Lessons, Global Learning” workshop in Zambia, participants brainstormed the strengths, weaknesses and gaps of their income generating activities for PLHA (see box). Lessons have been learned from other sources too, in particular about the benefits of well-planned, appropriate income generation. For example, ANCS has supported SIDA Service – a well-structured Catholic NGO based in Dakar, Senegal – to set up a series of income generating activities with PLHA, including setting up kiosks, market stalls and kitchen gardening. As Baba Goumbala of ANCS described: “Through an income generation programme, SIDA Service has enabled a man living with HIV to open a school in the suburbs of Dakar … for poor children who are not able to attend normal schools. They pay a small amount each term, and he is paid a monthly salary. This man dropped out of college when he knew that he was HIV positive. This man feels very useful and he has gained acceptance in the community.” As a report by SIDA Service notes: “The mere fact of being responsible for a given activity has helped raise the self-esteem of some PLHA … Some of them were able to “come out” as seropositive to their family and rediscovered how caring their loved ones could be: something that they had missed so much.”

Building on their successes and their experiences of earlier, unsustainable projects, ANCS have now developed a policy of only funding income generation activities that are managed by organisations with proven track records, such as development NGOs with experience in micro-credit. They also emphasise that income generation can only be complementary to rather than instead of other forms of support. For example, Sida Service insists that PLHA involved in income generation still have access to psycho-social support and treatment. These dual policies have led to much stronger projects, with clear benefits not only for individuals, but also services. Baba Goumbala continues, “PLHA who are involved in income generation activities are very busy, they earn money and they feel useful. We have noticed that they attend the hospital less often. It seems that their health is really improving”.

Analysis of income generation activities, Zambia

Strengths
  • Collective responsibility, creativity, involvement and solidarity.

  • Financial empowerment – by cushioning the impact of poverty, developing a coping mechanism and reducing donor dependency.

  • Increased practical skills, motivation and self confidence among carers.

  • Promotion of programme sustainability and viability.

Weaknesses
  • Inadequate business management skills, including market research.

  • Insufficient capital, particularly for the start-up phase – contributing to donor dependency.

  • Lack of innovation and entrepreneurship in approaches.

  • Possessiveness about programmes and competition for profits.

  • Inadequate needs assessments to identify community priorities and what is feasible.

  • Duplication of income generation activities in the same communities.

Gaps
  • National research, documentation and exchange about viable income generation.

  • Technical capacity, for example in business management.

  • Local capital base, combined with foresight in planning the sustainability of income generation activities.


“In many projects for PLHA, there are income generation activities, but the reality is that they’re not making enough profit for people to survive.”
Representative of the Network of Zambian People living with 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,” July 1999, Zambia)

Networks and referrals

Networking and developing referral strategies are practical approaches for addressing the growing demand for care and support. NGOs can develop specific, practical partnerships and referral plans to ensure a continuum of care and support for PLHA.

Collaboration through networks and partnerships increases the impact of NGO action, and a combined voice is stronger than many individual ones. As the demand for care and support grows, referral networks become increasingly important. NGOs need to make effective links with other organisations and sectors in order to build partnerships to provide a continuum of care; an example of this is in the provision of voluntary counselling and testing. It is often inappropriate for NGOs to provide this service, but it is a key component of a continuum of care and support. NGOs and community based organisations can both advocate for the provision of voluntary counselling and testing services where these do not exist and establish effective referral systems where these services are provided by another organisation.

In Mexico, group discussions led to a heightened awareness of the importance of NGOs working more closely with different sectors and with each other. As one participant said, “During the analysis of previous conflicts, we were able to put ourselves in the place of our adversary. We saw how we were relating to others. NGOs have common objectives, and so we are necessarily linked in a complementary fashion”. A comment from an NGO representative from Ecuador also underlined the importance of networking among NGOs: “We need to know exactly what each other is doing and to work together so we can respond as a whole. We need NGOs to put their problems on the table, work them out and see how we can work together”.

Facilitating joint NGO planning, Senegal

At the end of the “Community Lessons, Global Learning” workshop in Senegal, NGOs from each region committed to future collaborations. For example, the six Northern groups planned:

  • Holding a day of reflection for NGOs in the Northern Region to re-focus activities.

  • Strengthening a solidarity network in Saint Louis, based on the Cellule model in Louga.

  • Holding training on IEC and counselling in Louga and Saint Louis.

  • Developing and monitoring micro-enterprise projects (using the expertise of other NGOs).

  • Carrying out awareness raising for stakeholders in the North District.

  • Holding co-ordination meetings every three months.

  • Sharing resources among local organisations.


(Reference: “National Workshop on Sharing Lessons about the Development of Community Organisations and Programmes for Care and Support for People Living with HIV,” Senegal, May 1999).

Multi-sectoral collaborations

Sharing resources between sectors improves the quality and efficiency of services available to PLHA. Multi-sectoral collaboration should focus on finding ways for different groups and sectors to work together to maximise the use of limited resources.

The nature of HIV is such that no single organisation can hope to address all aspects of its impact, particularly in the area of community care and support. It is essential to mobilise a co-ordinated, multi-sectoral response to meet the care and support needs of the community.

In practice, the models developed by the Alliance have varied from broad collaborations with multiple stakeholders to specific partnerships with individual institutions. At the “Community Lessons, Global Learning” seminar in Senegal, ANCS shared a model of local collaboration in the form of four “Cellules” or “solidarity networks” (see box). In Ecuador, Fundación Vivir, a local NGO in Quito, collaborated with one specific local sector, the military. By offering prevention services to military personnel they were able to arrange for the Military Hospital to provide for clinical back-up for PLHA in the community. With the support of COMUNIDEC, they achieved this through a variety of strategies – including holding a participatory assessment among military personnel, incorporating STD referrals into prevention activities, and carrying out advocacy with high-ranking officials and hospital personnel.

At the Asia regional workshop for “Community Lessons, Global Learning,” Alliance linking organisations also shared their strategies for forming partnerships at a national level to complement NGO efforts. For example, in Cambodia – the country with the fastest growing epidemic in South East Asia and where 3.7% of adults are living with HIV/AIDS –the Government and NGOs including six KHANA partners have collaborated on a model of home based care. The project started in Phnom Penh in 1998, as a one year pilot by the World Health Organisation (WHO) and the UK Government’s Department for International Development (DFID). In February 1999, co-ordination was handed over to the Ministry of Health, with funding coming through NGOs, six of which are supported by KHANA. The project arose from NGOs’ desire to respond to growing PLHA needs in a non-competitive, sustainable way. Its aims were to provide appropriate home based care and support services for people with HIV and other chronic conditions, and to try out a model of combined government and NGO health care. It involves teams of health centre nurses and NGO staff and volunteers, with two objectives – to provide care and support and to educate communities about HIV/AIDS. Based at the health centres, they spend the majority of their time in the local districts, visiting people in their homes. They share referral systems and co-ordinate through a monthly meeting of project partners.

Although the Cambodia project faced initial challenges (see box), it has demonstrated how mixing government staff with medical backgrounds and NGOs with HIV/AIDS prevention backgrounds can both share skills and provide a comprehensive service. Also, the sharing of other resources and equipment has reduced costs and enabled effective coverage in the catchment areas. For example, between February and December 1999, the six KHANA-supported teams made over 8,000 home visits, with 28,000 family contacts. Over 2,000 community leaders and 6,000 other community members were reached indirectly, including through education sessions. Despite increasing caseloads, the mortality rate has stayed stable at around 7%. The programme has also made a considerable contribution to increasing recognition of the effectiveness of home based care. For example, the Ministry of Health’s National AIDS Programme has included home-based care as one of its seven priority areas in their strategic plan for 2000 – 2003, and is currently developing plans for adapting and scaling up the model to rural areas.

“Cellules” model of collaboration, Senegal

The Cellule of Louga started in 1997, based on a model from St Louis that was shared at an ANCS National Forum on Care and Support. It is based in the Social Services Department, and focuses on mobilising and co-ordinating services through existing agencies. The volunteers include social workers, health professionals and PLHA. They are trained in counselling and hold regular meetings to discuss difficult cases and plan activities. The Cellule works closely with a network of health professionals and community groups, including the Louga Hospital and community pharmacy, to ensure services for PLHA such as home and hospital visits, referrals, and confidential counselling. They also provide small grants to PLHA to establish income-generating activities, and carry out awareness raising among people with the potential to provide support to PLHA (such as local co-operatives and youth groups).

Their challenges have included convincing doctors to refer PLHA. As one member says, “We had to talk frankly with the doctors and explain our strategies in order to convince them of the mutual interest they and we had in collaborating.” Their achievements include supporting PLHA, developing a medication bank for treating opportunistic infections and referring PLHAs to free health services. The Cellule is now a leader in care and support in the region.

Establishing a collaborative care response, Cambodia

“In getting the project off the ground we faced two major challenges. At such an early stage in the epidemic, care was not yet on the agenda, and it was difficult to find both the motivation and the funding for anything other than prevention. A second obstacle was the conceptual wall between Government and NGOs. Cambodia’s economy is aid driven, and the popular perception of NGOs by government is of four-wheel drives and expensive programmes that do not conform to government policy. The reciprocal view of government is one of corrupt and poorly motivated staff. Nevertheless when the teams got out there and realised how well they collectively met the community’s needs for appropriate care, the ‘wall’ began to come down and the partnership has gone from strength to strength.”
Henrietta Wells, Joint Ministry of Health/NGO Home-Care Pilot Project Co-ordinator

Finding partners

Partnership building is a key strategy for NGOs in the delivery of comprehensive care and support to PLHA. Partnerships with different types of organisations need to be fostered, and may require a broader view of potential partners.

Building partnerships is an important strategy for providing comprehensive care and support for PLHA. A key element of partnership building is to identify a varied range of potential partners in order to provide better services to PLHA. This may mean building relationships with a new range of organisations. For example, NGOs with a secular approach may not have identified religious groups as a partner in prevention work, especially if views on condom use differ. However, their experience in community care and support means that religious organisations may be a crucial partner in responding to the needs of PLHA.

At the “Community Lessons, Global Learning” workshop in Ecuador, participants from Mexico shared their experiences of an Alliance Collaborative Programme. This was based on methodologies developed in countries such as the Philippines, Ecuador and Zimbabwe and promoted in an Alliance toolkit, “Pathways to Partnerships”. The programme in Mexico aimed to build local capacity in planning and implementing practical strategic partnerships with other sectors. It involved developing a team of trainers which included staff and volunteers from eight national NGOs involved in prevention and care as a “resource pool” to mobilise and train other local NGOs. A formal evaluation of the programme in August 1999 showed impressive results (see box). For example, when the programme began, only six out of the 64 NGOs had identified key partners. By the end of the first phase, this had increased to 63. The qualitative feedback was positive, with participants reporting a series of benefits – from enhanced individual empowerment, to increased organisational access to equipment, to a united national vision among NGOs. Based on this success, a similar capacity building programme has now been adapted for NGOs in Brazil (see box).

Building partnerships capacity, Mexico

Goal for capacity building programme % of participating NGOs achieving goal
… before training after training
Written mission statement 31 97
Key partners 9 98
Partnership building strategy 11 84
(Reference: Evaluation Report, Phase 1, Mexico, August 1999).

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).