Evidence Synthesis: Stigma & Discrimination

"It is clear that stigma is an important factor and that interventions which can reduce or remove stigma or that might reverse its effects could actively contribute to health behavior that enhances child health and development outcomes."

In 2013, the United States Agency for International Development (USAID) convened a team of experts to conduct a systematic review of the evidence on a range of topics, including the issue of how reducing or removing stigma and discrimination might contribute to health behaviour that enhances child health and development outcomes in low- and middle-income countries. The ERT 5 working group (ERT5WG) conducted this review in the context of: a limited number of published papers; very little information about the interventions; and a need to broaden the concept of stigma and discrimination to link with marginalisation and social exclusion.

It is noted here that stigma is socially and culturally defined and that stigmatisation is a social process. Stigma is manifested as different types (described in the report): felt stigma, enacted stigma, individual discriminations, and structural discriminations (accumulated institutional practices). Stigma and discrimination are described here as profoundly political; they are about informal and formal (legal) social control, hierarchy, and exclusion. Stigmatisation and discrimination against a child's family or community limits their access to opportunities, services, resources, and justice and should be expected to affect his or her health and life chances. Effects impede or divert child health, development outcomes, and pathways.

A 2009 review identified 22 published, validated scales that measure some part of the stigma process. (There are several challenges, including the fact that many studies that cite stigma do not measure it or do not investigate and measure its causes and consequences. A lack of unifying framework and common measures impedes comparison, compiling, and generalising conclusions.) Review findings include:

• HIV-related stigma in the context of prevention of mother-to-child transmission (PMTCT) of HIV - ERT5 found no studies that evaluated stigma-reduction interventions for pregnant women living with HIV. However, modeling data suggest that stigma reduction could reduce infant infections by as much as 33%. Evidence from community and institutional interventions suggests that: (i) Supportive networks (e.g., of people living with HIV, or PLHIV) play a critical role in helping strengthen capacity of marginalised communities to reduce internalised stigma and protest discrimination; and (ii) Interventions using a combination of sensitisation and participatory activities and/or clear policy guidance can reduce stigma.
• Neonatal survival and health - Evidence is moderate to weak, but it is known that addressing stigma and discrimination at all stages leading up to the newborn's entry into the world, during delivery, and shortly after birth is critical to ensuring survival and good health outcomes among neonates. Interventions designed to reduce discriminatory practices among healthcare providers are key to increasing neonatal health and survival of stigmatised groups; this can include the rural economically poor. Educating men about maternal care is a good mechanism for reducing stigma.
• Healthy early childhood development - Interventions to improve children's outcomes by reducing children's risk exposure and indirectly impacting stigma may constitute the best existing evidence. Poverty can be stigmatising – i.e., invites negative social judgements about worth and dignity that lead to discriminatory treatment. Maternal depression is strongly associated with risk factors that may be stigmatised. Social support for women has been found to result in reduced risk of depression and increased problem solving skills.
• Nutrition - Stigma was not addressed directly or indirectly in reference to childhood nutrition. However, longitudinal studies of interventions that promote gender equity and the empowerment of women indicated reduction in severe malnutrition and child mortality rate. Nutrition education for husbands and mother-in-laws as change agents was effective in South Asian countries.
• Structural discrimination - Millions of children in resource-poor settings and marginalised groups die unnecessarily from pneumonia and diarrhoea, reflecting lack of prioritisation and investment in effective interventions to prevent these conditions. Strategic advocacy for universal access and equitable, pro-economically-poor social policies (e.g., social protection) can counter structural discrimination.

Four specific recommendations for the Summit include:

1. Call for a consensus conceptual model - to be developed with full participation of affected community members.
2. Increase investment in stigma interventions and programme evaluation.
3. Improve reporting about interventions.
4. Continue qualitative and quantitative research to document the relational and sociocultural contexts of stigma related to child health interventions.

Concluding remarks include:

• Despite the broad consensus on the importance of stigma and discrimination as a potential barrier to access and uptake of any health information and services, this review found surprisingly little empirical research that directly addresses stigma, discrimination, and child health in low- and middle-income countries.
• Stigma and discrimination tends to be studied in small-scale projects and without reference to a common framework. This impedes building knowledge and is antithetical to the scientific project.
• Structural factors, such as policies and laws, are rarely included in studies of anti-stigma interventions for health, though these are important to achieve population-level behavioural changes that support child health interventions.
• More collaboration is needed between child health specialists and social and political scientists in order to develop and test interventions addressing social causes of child illness at the population level.

Click here for the 34-page report in PDF format.