Guide Families and Communities Responding to AIDS (Social Aspects of AIDS)

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Based on major multi-centre research in the UK, Dying to Care identifies why work stress is a problem in health care generally, and in HIV health care in particular. Mental Health and HIV Infection provides an up-to-date overview of the mental health consequences and of the kind of psychological, psychopharmaological and community forms of intervention available to deal with the adverse psychological effects of HIV infection.

Divided into three parts, the book All over the world, families and communities are key providers of care and support. Yet families and communities can also stigmatize their members, leaving people to die in the most appalling conditions. While much is known about female prostitution and sex work, relatively little is known about men who sell sex - either to women or other men. This book brings together an authoritative collection of Andrew Ball, Don C. Des Jarlais, Gerry V. Stimson May 21, Using a standardized methodology for the collection of data, Leading European researchers explore the differences and similarities between European countries in patterns of sexual behaviour Please accept our apologies for any inconvenience this may cause.

Sex, Work and Professionalism: New Challenges for the Social Sciences 1st Edition. Comparisons of National Surveys 1st Edition. August 08, First Published in Mental Health and HIV Infection 1st Edition Jose Catalan June 10, Mental Health and HIV Infection provides an up-to-date overview of the mental health consequences and of the kind of psychological, psychopharmaological and community forms of intervention available to deal with the adverse psychological effects of HIV infection.

Some studies were quasi-experimental, using longitudinal surveys or matching methods to establish comparison groups. What would have happened to a similar group of people in the absence of community-based interventions? Other studies used descriptive and analytical methods. Most country studies also collected a range of qualitative social transformation and financial data flow of funds. Desk studies reviewed the existing documentation as well as new survey data to inform and complement the country evaluations. By using several methods, the limitations of any one particular method were mitigated Adato, ; Rubio, Table 1 provides an overview of the focus and methodology of specific studies included in the evaluation portfolio.

For a full explanation of methodologies used in specific studies, the accompanying articles in this journal provide further details. A consultative peer-review process was embedded in the evaluation at the global, national and local levels with experts, academics, partner organizations, civil society, and other stakeholders, to help ensure the rigor of the evaluation. This section highlights some of the key findings from the evaluation portfolio.

The evaluation found that while some donor funds reach communities, CBOs also rely heavily on volunteers and maximizing scarce resources to achieve impact. While most CBOs did not focus on directly delivering services themselves, CBOs can have an impact on take-up of services, which may increase service effectiveness — the evaluation found robust evidence of increases in service take-up such as HIV testing or treatment adherence in multiple countries. Evidence on social transformation e.

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Social Aspects of AIDS

While community responses apparently contributed to social change among high-risk groups in Zimbabwe and India, in other settings, key informants believed that social transformation necessitated national policies that civil society could help to enforce. Perhaps most importantly, the evaluation found strong associative evidence that CBO activity can even decrease sexually-transmitted infection STI incidence, with a reduction in STIs found among FSWs participating in community organization in India, and a long-term reduction in HIV incidence found among women participating in community groups in Zimbabwe.

Key evaluation findings are presented in more detail below, from inputs to outcomes along the logical results chain. While a large portion of this is due to the growth of the epidemic itself, the rapid increase in donor funding during the last decade is another factor motivating community engagement. Since then, further increases have taken place. In this evaluation, the flow of funds to CBOs and their uses were examined by performing three country case studies, in Kenya, Nigeria and Zimbabwe, and conducting a survey of community organizations worldwide.

Figure 2 indicates that the resources mobilized by national funding channels, including governments, foundations, charities, and self-fundraising have become crucial sources of funding for CBOs. Nonetheless, CBOs operate with little total funding on average. Volunteers are a crucial resource for CBOs, perhaps allowing for the accomplishment of a greater CBO impact than their limited funding suggests.

The importance of volunteers — many of whom are caregivers — for CBOs suggests that these organizations are more sustainable over the long term than can be deduced by the high share of external resources in their funding. These data shed light on how CBOs use the resources they receive from the myriad funding channels discussed above. According to the survey, the largest share of their expenditures was for prevention.

Understanding the level of activity based on resources available and the budget allocations by CBOs provides important context for evaluating the impact of these organizations. This evaluation portfolio found evidence that, depending on the country context, communities can have substantial impacts on knowledge and behavior, use of services, and even HIV incidence, with mixed evidence on social transformation. Table 3 highlights some of the key findings of this evaluation portfolio. It outlines thematic areas and countries where evidence of effects was found, as well as the strength of the evidence.

The strongest degree of evidence is provided by experimental studies RCT that yield causal evidence of impact. However, in one area, stigma, both positive and negative impacts of community intervention were seen. The evaluation found that CBOs can impact both knowledge and behavior, but that the type of activity undertaken by CBO matters. Prevention activities by CBOs were found to have positive effects in some cases, but smaller impact in other situations.

In Burkina Faso, community activities such as theater plays and radio debates were found to increase knowledge only partially, with men and women retaining differently. In Kenya, though, it was found that targeted community-level activities could lead to significant increases in knowledge of the benefits of monogamy and condom use Figure 4. Knowledge interventions are often based on the idea that increased knowledge should impact behavior. Yet, there are many examples of communities and populations where despite high knowledge about HIV, little behavioral changes have taken place.

Nonetheless, the evaluation found robust evidence of behavior change associated with CBO activity. Associative evidence between the community response and condom use was also found in Kenya and Burkina Faso.

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In Zimbabwe, participation in a community group was associated with both increases in condom use and a reduction in the number of partners for women only, demonstrating that gender can be an important factor in behavior change. The types of community groups women participated in might have been more effective at altering behavior than those that men participated in, or women may be more open to risk reduction. Increasing use of health services is one area where the community response to HIV can strengthen the impact of other sources of support.

Indeed, the evaluation found that a strong community response can cause greater use of existing HIV services, such as increased participation in prevention, treatment, care, and support in Nigeria, primarily in rural areas Figure 5 Idoko et al.

Evaluation of the community response to HIV and AIDS: Learning from a portfolio approach

In Zimbabwe, community group participation was found to increase both take-up of prevention of mother-to-child transmission and HIV counseling and testing Gregson et al. Community responses can also encourage treatment take-up. Evidence for high-risk groups in India confirms these results, with community empowerment increasing the use of government health services by FSWs.

Encouraging results about increasing use of services in the presence of stigma were found in Kenya, however. These results indicate that community responses can increase the demand for health services in the context of generalized and concentrated HIV epidemics among groups at high risk of infection. However, the issue of stigma remains a major hurdle to increasing the use of prevention, treatment and care in general.

The evidence from the country evaluations including from the articles included in this journal issue indicates that there are complex pathways for community responses to contribute to social transformation that depend substantially on the population groups, country contexts, the geographic location, and the overall government policy.

The Gay HIV Connection

The evaluation found evidence that the community response can generate social changes among groups that are severely affected by the HIV epidemic. In India, for example, being a member of a sex worker community group was associated with access to social entitlements, reduced violence, and reduced police coercion Mohan et al.

Among Zimbabwe's general population, the community response led to significant changes in sexual risk perception and a reduction in stigmatizing attitudes toward people living with HIV and AIDS Gregson et al. However, national policies can make a big difference in the power of community groups to effect social change.

For example, in India, although sex work is illegal, it is not a criminal offence, which opened the door to a dialogue with the police, which resulted in reduced police violence. Furthermore, community members in Kenya and Nigeria believe that social changes related to gender norms and violence against women require a national policy shift. Communities can then follow up and help enforce those social policies. In Kenya, key informants perceived declines in violence against women as primarily linked to changes in national policies such as the introduction of free primary-level education and the adoption of legislation protecting women from violence Riehman et al.

In Nigeria, increased awareness, social consequences for the perpetrators, and the influence of government, NGOs, and other local organizations were often cited as reasons for the decline Idoko et al. As a note of caution, in the domain of stigma, some community HIV programs appear to carry the risk of unintended consequences. For instance, a negative but small yet statistically significant association was found in Burkina Faso between prevention programs and men's tolerance toward infected persons.

A similar consequence resulted from home-based counseling and testing in Kenya.


  1. Aint No Sunshine: Men Reveal the Pain of Heartbreak.
  2. Community Responses to HIV and AIDS (Research and Policy Brief).
  3. CRC Press Online - Series: Social Aspects of AIDS.

This suggests that prevention programs could exacerbate personal stigmatizing attitudes by creating greater awareness of the disease. In this context, it is important to ascertain whether communities are equipped to address these deeply ingrained feelings in people. Qualitative approaches such as those based on community dialogue may prove adept at changing community member beliefs and practices.

To do this, HIV incidence must be reduced. Although not all the country studies that make up this evaluation portfolio were able to measure changes in incidence, two of the studies explored this question, and provide associative evidence that community responses can affect incidence of HIV or STIs. In Zimbabwe participation in a community group was associated with reduced HIV incidence for women during the period — Indeed, Zimbabwe is one of the few sub-Saharan African countries for which there is compelling evidence for a sustained decline in HIV prevalence driven by reduced levels of risk behavior Gregson et al.

In the following period — , the decline in HIV incidence slowed, however. In India, community group membership compared to non-membership was associated with lower prevalence of STIs, such as chlamydia and gonorrhea among FSWs Mohan et al. This evidence cannot be generalized to all groups and settings, but shows a promising suggestion that community response can play a role, along with other factors, in the overall battle to slow the spread of HIV.

This discussion is primarily based on quantitative data supported by qualitative findings of the 17 studies that comprised this evaluation portfolio. It also incorporates field observations, and key informant and expert contributions made during the consultative process of the evaluation at the local, national, and global levels. This evaluation of the impacts of community responses found that the community response can be effective at combatting the HIV epidemic by improving knowledge and decreasing risk behavior, increasing access to and use of health services, sometimes contributing to social transformation, and even decreasing STI incidence in two cases.

Although this evaluation found that community responses can have a large impact on the HIV epidemic, it should be noted that a community response cannot become a substitute for a national response.


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  • The clearest evidence of this is the findings around increasing use of services. In this area, community responses create a large impact by increasing take-up of services provided by other actors. Communities can help deliver specific results, as part of evidence-informed national implementation plans. A key implication of these findings is that evidence-informed policy and programming may be able to support community responses to achieve greater effectiveness by: Program designers who are savvy about what CBOs and other community actors such as caregivers can realistically achieve can maximize the inputs and the results, while stakeholders can play a critical role in helping communities understand their epidemics and identify priorities for their catchment areas.

    As part of supporting a strong community response, the amount and nature of the resources that flow to community groups need to be considered. If strengthening the community response itself is essential for longer-term impacts, sustainability, and greater effectiveness of national programs, then, alternative means of supporting community groups should be explored. Compensation for volunteers, many of whom are caregivers, varies hugely but can include stipends, social protection, in-kind payments and access to training and opportunities.

    The UK Consortium caution that unpaid work of these groups must not be seen as a cost saving or program efficiency. Programs need to assess and accommodate the type of compensation that would be appropriate to the community and programmatic context UK Consortium on AIDS and International Development, However, issues of efficiency and effectiveness need to be considered along with equity within the real context of where community groups work. Many do so in remote areas, working with disadvantaged, marginalized and hard-to-reach populations. This evaluation also has implications for future research on community responses and their intended impact.

    One is that systematic evaluation of the community response may have more value than highly technical and complex but narrowly defined studies. A systematic approach would help establish a more continuous process of building knowledge about what works and what does not work, as well as to identify how to help shift investments to areas that would generate greater value for beneficiaries. On the thematic front, there are several areas worth investigating further which are common across all community responses.

    The current approach is to develop program impact pathways as part of program design. Seldom do programs go back to review and update this results chain after the program has been implemented. Doing so, based on the empirical evidence and knowledge gained by implementing a particular program, would improve programming and results. A final implication of this study is for research. The question drives the method, not the opposite. Researchers need to be able to select and apply the most appropriate research methods to examine different aspects of the community response taking into consideration the complexities of evaluating local responses.

    We have found that insights can be gleaned from multiple and different research methods, and that RCTs alone cannot illuminate all aspects of the community response. Creativity coupled with rigor is needed in the selection and application of research methods to examine community-based actions and activities. This evaluation portfolio provides robust evidence on the mostly positive contribution of community responses to national HIV and AIDS responses in many cases and circumstances. Nonetheless, there are limitations. This evaluation portfolio of country and desk studies do not provide a definitive answer to the effects of community responses on knowledge, behavior changes, use of HIV and AIDS services, social changes, and biological outcomes.

    Thus, the evaluation results, including those contained in the articles in this special issue of AIDS Care, do not support a one-size-fits-all design of community responses.