Commun ity Participation in Nutrition Programs for Child Survival and Anemia SB Rifkin, G Hewitt & AK Draper Centre for Public Health Nutrition Scho ol of Integrated Health University of Westminster London July 2007 This publication is made possible by the generous support of the American people through the United States Agency for International Development (USAID) under the terms of Cooperative Agreement No. GHS-A-00-05-00012-00. The contents are the responsibility of the Academy for Educational Development and do not necessarily reflect the views of USAID or the United States Government. For more information about the A2Z Project Call: 202-884-8785 Email: [email protected] Visit: www.a2zproject.org TABLE OF CONTENTS Executive Summary 1. Introduction ........................................................................................................ 1 2. Community participation and health ................................................................ 3 3. Evaluating community participation in health ................................................. 5 4. A framework for evaluating the role of community participation in nutrition programmes ............................................................. 8 5. Case studies ..................................................................................................... 15 6. Lessons learned ............................................................................................... 45 7. Conclusions ...................................................................................................... 50 References .................................................................................................................. 51 Appendix 1 .................................................................................................................. 54 Executive Summary This review presents a critical analysis of the role of community participation in enhancing the uptake of nutrition interventions for child survival and anemia and whether any such increases in uptake are sustainable and scaleable. One on- going challenge in assessing the role of community participation in health improvements is defining the characteristics of different forms of community participation and their impact on health/nutrition. To address this and to provide a methodological tool for this review, an evaluation framework was developed that incorporates a typology of community participation. This framework was applied to five case-studies of program experience in which community participation was a key element of the program design and/or delivery. From this analysis some general findings emerge. Firstly the framework allowed for a nuanced analysis that showed the differing nature of community participation achieved within each of the programs, where this fell along the community participation continuum in the framework, and how it related to program outcomes. In terms of program outcomes, positive impacts were seen on uptake and on various health indicators in all of the programs, but these were achieved in different ways indicating that no single “right” approach to community participation exists. Child Health Days achieved a good community response in two programs and in one was linked with a broader community health and development strategy. This suggests that it may be possible to use community development approaches as a channel for more vertical interventions, although the wider process should not be forgotten. Community health workers or volunteers were involved in all programs, but again in different ways that have implications for sustainability. All programs were scaled-up to some degree. The more vertical single intervention approach of the NVAP in Nepal was scaled up and expanded to achieve national coverage and deliver a wider range of interventions, and anecdotal evidence suggests that the type of community participation may be evolving from mobilization into something wider. However, firm conclusions cannot be drawn as to whether the different types of community participation lend themselves more or less to scaling-up because of our lack of understanding about the process and hence replicability of different community participation approaches. Clearer differences were seen in relation to the different types of community participation and sustainability; the greatest potential for sustainability was seen in those programs that tended toward the community development end of the continuum and where health outcomes were part of a broader package, but inevitably change was not instant. The case-studies show that while vertical interventions can produce comparatively rapid results, sustainability still requires long-term money and support. These are necessary, but each by itself is not sufficient to ensure success; sustainable change is more likely when programs address wider development issues rather than narrow behavior change objectives alone. To conclude, this review and analysis demonstrate that community participation can enhance the uptake and response to health interventions, their scalability and sustainability, but that the process by which these programs are implemented is crucial. More prospective rigorous evaluations of community participation are still needed that examine the role of process and impact on outcomes. 1. Introduction 1.1 Background and rationale This review was prepared at the request of A2Z: The USAID Micronutrient and Child Blindness Project. The mandate of the USAID-funded A2Z Project is to implement and strengthen micronutrient programs to improve the nutrition and health of vulnerable populations; provide global technical leadership in micronutrients; and support organizations that work to prevent child blindness. With a focus on the sustainability of programs, A2Z aims to expand coverage of vitamin A, zinc, anemia reduction, and iodine interventions primarily through country and regional programs. Globally micronutrient deficiencies remain major public health challenges and nutrition interventions to address these are a key part of child survival packages. While the scientific evidence base regarding effective interventions to address micronutrient deficiencies is comprehensive, uncertainty remains as to the most effective means of delivering interventions in ways that can be scaled up and sustained to achieve the child survival Millennium Development Goals. Numerous calls for a focus on enhanced delivery systems exist (Bryce et al, 2003), but few reports of success, at least for nutrition-related interventions. Involving communities, either as a complement to the formal delivery system or independently of it, has long been identified as a critical component necessary to achieve effective and sustainable programs for health improvement and to address the social determinants of ill-health (Assai et al, 2006). Following Alma Ata and as part of the primary health care movement much activity in the 1980s used community-based approaches and community/village health worker programs were established in many countries to implement a range of health interventions. Interest waned in the 1990s, but interest in the potential of community-based approaches and particularly in the potential of community health workers (Haines et al, 2007) is again renewed. As Hossain et al (2004) have pointed out, however, it remains difficult to show a direct link between community development and health outcomes and a challenge remains 1 in delineating the characteristics of different types of community participation and their impact on health, including the process by which interventions are implemented. This is due in part to on-going challenges of defining and distinguishing the terms participation and empowerment. Thus a rigorous examination of the evidence relating to the role of community participation in enhancing the delivery and uptake of health interventions is needed, particularly in light of recent criticisms of participatory development (Cooke and Kothari, 2001). 1.2 Overview and aims The purpose of this review is to appraise critically the current literature and illustrative program experience in relation to community-based approaches to implementing nutrition programs, particularly those relevant to child survival and anemia. The review will address the primary question: What evidence exists that community participation enhances responses by the general population and/or health care providers to health interventions for child survival packages, and further what evidence shows that this uptake is sustainable? Secondary questions addressed are: 1) How do we define community participation and what is its relation to community mobilization and empowerment? 2) Having created a typology based on these definitions, which of these work best for the uptake of child survival packages and which work best for enhancing the sustainability of child survival packages? 3) What is the evidence that these approaches can be scaled up? What is the evidence that these approaches are sustainable? 4) Based on these findings, which are the most critical areas requiring further investigation? 1.3 Methodology of the review The review followed a selective and critical approach. Given the timeframe a full systematic review was impossible and further the nature of the evidence does not lend itself to such an approach. Previous work by the authors was used as the starting point for the review (for example: Rifkin et al, 2000; Rifkin, 1996; Rifkin, 1985). This was extended and updated to include: • Published material since 2000 • Recent reviews on community participation and empowerment in health • Case-studies of program experiences focusing on nutrition-related programs and interventions relevant to child survival in which women are the main beneficiaries. The case-studies include a range of motivational strategies, 2 including the AIN-C and similar programs. Using this evidence, a typology of community participation was developed and factors critical in programs where community participation was the basis for successful health outcomes were identified. These were used to develop a framework to evaluate the process of community participation and its relationship with health outcomes. This was then applied to selected case-studies of actual program experiences to assess the role of community participation on the uptake and sustainability of child survival interventions, with particular emphasis on analyzing the implementation process. Key lessons learned were drawn from these and areas requiring further research identified. 2. Community participation and health In 1978, member states of the World Health Organization (WHO) voted to adopt the policy of Primary Health Care (PHC). In doing so, they recognized that health improvements were not merely the result of health service delivery and medicines. Reflecting recognition of social determinants of health which included social, economic and political concerns, PHC was based on principles of equity and community participation and supported by recognition of activities for appropriate technology, multi-sectoral collaboration and sustainability (WHO, 1978). The idea that community lay people had a crucial role to play in health improvements was rather surprising to health professionals. However, this principle was in the PHC policy for several reasons. 1) Community resources including money, materials and time can contribute to improved health. 2) Peoples’ health is not merely an outcome of health services but equally important what people do to and for themselves. 3) Health improvements and sustainability of community health programs depend on people defining their needs and taking action to meet these needs (Rifkin, 1990). 4) “Social learning” where professionals and community people learn from each other enables both groups to define joint purposes and build partnerships (World Bank, 1996). In the years following the acceptance of PHC, efforts were made to integrate the principle of community participation into health planning and health care. However, this was not an easy task because there was no agreement on standard definitions of the terms “community” and “participation.” “Community” is usually often defined in geographical terms, but this does not always capture the deeper reality around which groups form: identities, ideologies, religions, income, etc. and members do not necessarily want the same thing at the same time (Jewkes and Murcott, 1996). Defining “participation” is equally complicated. As 3 noted by Oakley (1991), participation can be active or passive; can be contributive, collaborative or transformative. In addition, authors such as Nelson and Wright (1995) directly addressed the question of power in community participation and how participation reflected who had power and for what it was used. Community participation was traditionally seen by the medical establishment as mobilizing people to adopt an intervention. A typical example is mass immunization day campaigns (Gonzalez, 1965). Such programs, however, proved difficult to sustain because of their high resource demands and the challenges of covering populations in outlying areas. PHC tried to address this by implementing wider interventions that were part of the whole fabric of development. Centrally-driven, stand alone Child Health Days do not reflect principles of PHC that strive to address the wider social and structural determinants of health. To understand the experiences of integrating community participation into health care programs, Rifkin developed a typology that enabled planners to view how they approached community participation in their own programs (Rifkin, 1985). 1) The medical approach. Health is defined as the absence of disease and participation as having people do what the professional advises. This approach may be seen as mobilizing communities. 2) The health services approach. Health is defined by the WHO definition as “the physical, mental and social well being of the individual” (WHO, 1946) and participation as a contribution of the community’s time, materials and/or money. This approach might be viewed as collaboration, but with professionals defining what is needed. 3) The community development approach. Health is defined as a human condition and participation as the planning and managing of health activities by the community using professionals as resources and facilitators. This approach might be seen as empowerment (defined as creating opportunities for those without power to gain knowledge, skills and confidence to take decisions that affect their own lives) (Rifkin and Pridmore, 2001). Although these approaches are not mutually exclusive, each is based on a particular health view and community actions lead to different definitions of expected inputs and outcomes. Reviewing the literature on how community participation has affected health and poverty eradication, Rifkin et al (2000) traced the historical development of these different approaches to community participation in health improvements. The review illustrated some critical points in the relationship between better health and community participation. 4 1) Community participation is best understood as a process that is situation specific. The search for a “gold standard” for replication and evaluation is not realistic or appropriate. Although the biomedical model dominates the health field with the expectation that direct causal relationships can be identified and acted upon, such a paradigm is not valid when examining social processes; as widely recognized in the social sciences, these are complex, context specific, hard to predict and are not equivalent to physiological processes. 2) Case studies suggest that more sustainable improvements are possible when community empowerment through participatory approaches is pursued. However, programs pursuing empowerment face challenges that include the need to address issues of power and control. 3) Case studies reflect developments in a specific situation and therefore are mainly anecdotal. A more extensive investigation published by Taylor-Ide and Taylor (2002) discusses in detail the results of improvements in health and overall development of community participation. 4) Little evidence exists on how interventions can be replicated or on the relationship between community participation and health outcomes. This point was confirmed in a publication by Hossain et al (2004). To quote: “In these years, of research and project implementation, one can observe a myriad of factors that may have played a role in improving health, but the challenge remains to find the definite answers regarding the share between interventions and the process of implementation (influence of community empowerment or development) in improving the health of communities and at what level and scale.” These conclusions help to define the challenges for assessing the role of community participation on health outcomes in nutrition programs for child survival and anemia. 3. Evaluating community participation in health PHC assumed that community participation was critical for health improvements. As noted above, however, evidence to link participation and health improvements directly has been scarce. Much evidence indicates that without community participation health and development programs flounder (Pritchett and Woolcock, 2004). The search for the converse has proved illusive. For example, in trying to address the direct impact of participation on health improvements Manandhar and colleagues proved how participation in women’s groups in a controlled study in Nepal improved ante-natal outcomes (Manandhar et al, 2004). The tightly controlled epidemiological study illustrated a causal relationship. However, the study and subsequent publications have so far failed to describe how these women’s groups functioned and whether each group had exactly the same intervention. This example shows how difficult it is to identify and describe the process by which communities are involved in health programs. 5 Others have attempted to develop assessment frameworks using qualitative indicators and/or combining these indicators with quantitative information to examine the participation process in detail. Most recently, the Population Reference Bureau published an issue of their Health Bulletin that proposed a community participation development continuum (Gryboski et al, 2006; see Appendix 1). The authors then examined five programs from developing countries and assessed where they fitted in the framework, giving each a score according to the above description. The assessment used both quantitative and qualitative indicators and described each case study in terms of background, participatory approach and outcomes. Rifkin and others (Bichmann et al, 1989; Rifkin et al, 1988) have also developed a tool for assessing participation that has been used in both developed and developing countries. This includes a visualisation called a spidergram that links five continua together with narrow participation at one end and broad participation at the other (see Figure 1 below). It was designed to assess changes in five factors (needs assessment, leadership, organization, management, and resource mobilization) by first recording the breadth of participation at the beginning of the program as a baseline (see Figure 2) then at designated times during program development (see Figure 3). This tool can enable planners to see whether participation has changed in any one factor and to discuss why this had happened with programme participants. Figure 1: Diagram for assessing community participation in a health programme (Bichmann et al, 1989) 6