Strengthening Community-Based Responses to HIV/AIDS in India: a Pilot Initiative
Background General Data Total Population (1999):
998,056,000
HIV/AIDS Data At the end of 1999 it was estimated that there were a total of 3,700,000 adults and children living with HIV in India, of whom 3,500,000 were adults (including 1,300,000 women and 160,000 children). During 1999 there were thought to be 310,000 HIV related deaths. It is estimated also that at the end of 1999 there a total of 557,570 children under the age of 15 were orphaned through the loss of mothers or both parents to HIV/AIDS. According to the UNAIDS epidemiological fact sheet for India:
On a local scale, in different parts of the country, community based responses are addressing the epidemic with some degree of success. Among the most notable of these is the Sonagachi project in the state of West Bengal. This has led not only to a reduction in HIV prevalence among sex workers, but it has contributed to increased self-esteem, better organisation and a sense of agency among local communities.
Brief Description Supporting community responses has been a significant feature of the UNDP response to the HIV epidemic at both global and national levels. A key component of this has been the development of strategic partnerships with civil society organisations which have the potential to play critical roles in the national response. This includes not only those groups and organisations which work exclusively on HIV/AIDS issues but also those which are involved in development more generally. UNDP has been especially eager to support the greater involvement of the latter group because of their sheer number in India and more importantly because their work links so clearly to the socio-economic determinants of the epidemic. In some countries initial responses to the HIV epidemic have relied upon the assumptions that the fundamental problem to be addressed is one of lack of knowledge and that, in itself, the provision of information will lead to behaviour change. Hence, drawing upon experience of other health and development issues such as population and reproductive health, water and sanitation, countries have invested in large-scale IEC campaigns, sometimes in combination with more focused educational programmes for specific ‘"susceptible" groups. However, the large-scale nature of these activities tend to result in content which is general rather than specific, simple rather than complex, and externally determined rather than locally generated. Not surprisingly, impact evaluation consistently reveals significant potential in terms of creating changes in awareness but much less convincing evidence to demonstrate impact upon behaviour. One broad conclusion from this experience is that awareness is a necessary, but rarely sufficient, step in the process towards behaviour change. Another broad conclusion is that risk-associated behaviours such as unprotected sexual intercourse (which accounts for the vast majority of HIV infections in India), or sharing of equipment among injecting drug users, are fundamentally social events, involving more than one person and occurring within specific social, cultural and economic settings. Thus, it was felt that the focus of programmes might need to shift from the level of the ‘individual’ to that of ‘the community’. In many communities throughout India the most credible sources of support are the numerous NGOs involved in a vast array of local health and development issues. Furthermore, in many countries, and particularly in India, there already exists a considerable accumulation of expertise in relation to participatory development. This approach is based upon fundamental principles of locally determined problem solving based on respect for local knowledge and values. It was in recognition of the above that UNDP decided to support a pilot initiative in order to identify and demonstrate ways of generating relevant and sustainable local responses to the epidemic by building upon local expertise and partnership across traditional sectoral boundaries.
Goal The project goal and objectives were as follows: And more specifically:
Brief History Building upon a history of activities in India relating to HIV and Development, including support for a situational and needs analysis of NGOs in 1995, a consultant visited a number of NGOs during 1996/7 in order to explore the learning approaches currently used by these organisations. The consultant noted the wealth of experience among the NGOs in terms of work on HIV/AIDS issues but also highlighted the potential constraint imposed by a preponderance of "message-oriented" approaches (IEC). The limitations of this approach to HIV/AIDS were indicated: for example it is unlikely that a narrow focus on behaviour, without appropriate consideration of context and the human relationships within which such behaviour occurs, will necessarily lead to behaviour change. Some NGOs, which had already used such approaches, expressed frustration that they had been unable to achieve the goal of behaviour change which they had set for their work. It was noted that additional efforts were needed to enhance understanding and skills in relation to the application of participatory approaches. On the basis of these broad findings, UNDP organised an Informal Consultation (Delhi, 18-20 February 1998). The goals of the Consultation were to bring together a number of NGOs in order to share experiences of working on HIV/AIDS issues, particularly in relation to the learning methodologies and tools employed in this work, and to explore the development of collaborative local strategies for expanding the use of participatory approaches to learning in relation to HIV/AIDS issues. Participants were primarily those involved in training and communication and represented NGOs from Chennai, Mumbai, Pune and Delhi. The Consultation provided participants with the opportunity to experience a range of evocative participatory tools designed specifically to address HIV/AIDS issues within a broad context of social and economic development. These activities provided an opportunity for participants to clarify differences between message-oriented IEC approaches and participatory approaches which are experiential, interactive and dynamic, and which engage people as equal partners in defining their own problems and solutions. The meeting also highlighted a number of challenges posed by the need for more effective networking and capacity development among NGOs and for greater cooperation between NGOs and government. Moreover the issues raised during the consultation were supportive of national efforts to promote more effective community-based initiatives and to enhance government/NGO collaboration as reflected in the national strategy. Towards the end of the Consultation, participants developed follow-up strategies for strengthening their own capacity in relation to the development, implementation and evaluation of participatory approaches, and for sharing the experience and outcomes of the Consultation with other NGOs in their local areas. UNDP provided participants with training on HIV and development and followed this with seed funding for each participating state to conduct its own capacity building event on HIV and Development, where necessary drawing upon the technical resources available within the ‘core’ group. In this way the number of advocates of participatory approaches to learning about HIV was increased in a number of states. The project culminated in a training of trainers on HIV and which took place in December 1998.
Major Elements of the Project Drawing on Existing Resources Along with many other organisations, UNDP has a long history of involvement in participatory approaches to development issues. It was felt that this experience and accumulated expertise might prove to be of considerable value in providing assistance to a range of NGOs which expressed interest in developing the nature and impact of their educational/communications work. To this end, a consultant with several decades’ experience of participatory methodologies was recruited to undertake needs assessment activities, to develop a number of pilot participatory tools relevant to developmental aspects of HIV/AIDS and to write these up in the form of a toolkit. Similar sharing of experiences was also made possible through participation of a consultant with many years experience in West Africa. Finally, and most important in terms of sharing of experience, was the involvement of a strong, vocal group of individuals with many years experience between them in terms of working on HIV/AIDS. In contrast to many similar meetings, the vast majority of participants and facilitators were of Indian origin, looking inwards among peers for strategies and solutions instead of depending upon ‘outsiders’ to define the problem and determine the solutions. Explicitly, the process drew upon an existing pool of competent trainers within the country, and focused upon enhancing their capacity to respond to the emerging challenges posed by the epidemic in India. Through a number of local situation assessments, together the knowledge and expertise of the group members, the process could be adapted as necessary to respond to a richer understanding of local realities of HIV/AIDS in India, building drawing upon local knowledge and expertise instead of the assumptions which so often guide development initiatives. Situation Assessments The history of this project dates back to 1995 when UNDP provided support for a situational assessment and needs analysis of NGOs in India in relation to the epidemic. The report drew attention to the need for increasing partnership between government and NGOs as well as the need for capacity development building among NGOs. Subsequently a consultant visited a number of NGOs during 1996 and 1997 and drew attention to the specific need for enhanced understanding and skills in the use of participatory approaches in relation to HIV/AIDS which would be both more consistent with the community focus of these organisations and more relevant to generating the kinds of solutions to the epidemic which would be locally relevant and sustainable. Participatory Research in Asia were commissioned to undertake an analysis of organizations currently using participatory approaches. Training in HIV and Development The Informal Consulation led to UNDP support for a training workshop (July 1998) which was provided for NGO representatives on HIV and Development. Similar workshops were then implemented in seven States with financial support from UNDP and technical support provided as necessary by more experienced NGOs. A Training of Trainers workshop was held in December 1998 (with a preparatory meeting held in New Delhi in September 1998) and included a number of participants from the state level workshops. Gender Dimensions As elsewhere the HIV epidemic in India is a gendered phenomenon, affecting women and men, boys and girls, in different ways which reflect their social, cultural and economic status. For this reason, among others, gender considerations were an integral aspect of the project and reflected in a number of ways: for example:
Core Planning Group Over the course of the project, a local core planning group gradually came together and begun to assume ownership from UNDP for the project at national level. A planning meeting was organised in October 1998 where this group was more formally established and where it assumed responsibility for a number of concrete project activities. Documentation As a pilot project which is designed to address development issues, documentation of this initiative has been an important element of the project, not only in terms of recording the project’s "institutional memory", but also in terms of generating and disseminating broader lessons learned. Documentation produced by the project was developed in response to the specific felt needs of participants who expressed a wish for material which captured the "life of the process" and which made available to others the learning resulting from the project. In addition to consultancy reports and project updates, the following documents have been produced:
Partnerships and Alliances The concepts of partnership and alliance have been placed at the centre of this project. The project itself was evidence of partnership between UNDP (both the global HIV and Development Programme (HDP) and the field office) and UNAIDS (and other UN agencies including UNIFEM). Partnerships were established at all levels: national, state and local, and across sectors and disciplines. At certain levels (for example the core NGO group), the partnerships have gone on to have an independent existence beyond the project. The conceptual framework of the project (Appendix 1) highlights the importance of ongoing policy dialogue (for example with between HDP and the UNDP Field Office, with UNAIDS and with NACO) in establishing a sufficiently enabling environment within which the project could be implemented. Strategic linkages with key stakeholders were established and reinforced on a regular basis. Attention was paid to clarifying the possible roles which might be played by NACO in this process, a key variable given NACO’s pivotal role in facilitating collaboration and partnership at national level and in setting an example for state level coordination and activity.
Monitoring and Evaluation The project was closely monitored by through periodic visits, submission of reports and via regular telephone and email communication between UNDP (New York) and the field office in India, and within India among UNDP, UNAIDS, NACO and the NGOs. Preliminary discussion on evaluation within the project highlighted the distinction between evaluation of the individual components of the project (for example the training workshops) and of the process and outcomes of the project itself. An important component of the evaluation has consisted in the consolidation of the project documentation with a focus on identification of lessons learned. Another important aspect was the production of an autonomous evaluation report by one of the project participants. At the level of outputs, the project has delivered in a number areas: selection criteria were established for the selection of NGOs to participate in the capacity-building activities; capacity has been developed among a broad range of NGOs, private and governmental institutions from different regions of India and a body of documentation produced which describes the process and unfolding of the project. In terms of outcomes, it is inevitably more difficult to state these with confidence. Nonetheless it is clear that the consistent focus upon a transparent and participatory process (mirroring the content of the project) allowed a group of key individuals to establish themselves as a group which became committed to addressing developmental dimensions of HIV/AIDS in participatory ways. This commitment was reflected in the professional and proficient way in which they undertook capacity building work within their own states before coming together again to design, organise and facilitate a successful HIV and development workshop. Awareness has been increased among participating groups, both of the development implications of the epidemic and of the place of participatory approaches within community responses. A gendered approach has been adopted within the project from the outset and has included the use of a training module on gender, development and the HIV epidemic. The group, brokered by UNDP, established a process of dialogue with NACO, something which had previously proved problematic. This however seems not to have lasted, and suggests the potential value of an ‘honest broker’ role filled by someone who is trusted by both parties and perceived not to be pursuing their own political agenda. Individual components of the project were each evaluated. Since the project focused largely upon capacity development through training, participant evaluation sheets formed the bulk of the data for this. The formal publication resulting from the project the ‘Toolkit’ has only just become available and its impact, therefore impossible to assess. Nonetheless, some of the activities have been incorporated within the UNDP HIV and Development Workshop materials and used with great success in the Caribbean and Central America. Results to Date:
The Future Towards the end of the project, action plans were prepared by participants from six different states and local funding secured (and administered through the UNDP country office) for their operationalisation. These plans are currently in the process of implementation. Lessons learned through this project are being widely shared, not only within India and the Asia region but beyond. For example the toolkit has been shared with all UNDP country offices and will also be available in French and Spanish. Further Information Further information can be obtained from: UNDP HIV & Development Programme and through the HIV and Development Programme Website:
Best Practice Lessons Learned:
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