Dr. Usha S. Nayar Fmr. Professor & Deputy Director, Tata Institute of Social Sciences, Mumbai, India U.S. Government Evidence Summit on Enhancing Child Survival and Development in Lower- and Middle-Income Countries by Achieving Population-Level Behavior Change June 3-4, 2013 Evidence Synthesis

 Dr. Usha S. Nayar, Fmr. Professor & Deputy Director, Tata Institute of Social Sciences, Mumbai, India Chair  Dr. Susan Zimicki, Senior Scientist, FHI350, Washington DC Co-Chair  Benjamin Isquith, HIV/AIDS Program Advisor, USAID, Washington DC, Facilitator  Elizabeth Anderson, Program Assistant, USAID, Washington DC, Coordinator ERT 5 Leadership ERT 5 Members  Kim Seifert-Ahanda, MPH Senior Behavior Change Advisor, USAID Office of HIV/AIDS, Washington DC  Barbara de Zalduondo, MSc, PhD, Senior Advisor to the Deputy Executive Director for Programme, UNAIDS  Mohan j Dutta, Head, Communications and New Media & Director, Center for Culture-Centered Approach to Research and Evaluation, National University of Singapore; Affiliate Professor of Communication, Purdue University  Katherine Fritz, PhD, MPH, Director, Global Health International Center for Research on Women, Washington DC  Zewelanji N. Serpell, Ph.D., Associate Professor, Department of Psychology, Virginia State University  Lorraine Sherr, Ph.D., Professor of Clinical and Health Psychology, University College London UCL  Dr. Janet Shriberg, OVC M&E Advisor, Orphans and Vulnerable Children, Office of HIV/AIDS, USAID, Washington DC  Anne Stangl, Senior Behavioral Scientist, International Center for Research on Women, Washington DC  Vicki Tepper, Ph.D., Division Head, Pediatric Immunology, Rheumatology and Adolescent Medicine; Director, Pediatric AIDS Program; Associate Professor of Pediatrics, University of Maryland School of Medicine  Laura Brady MPH Program Associate, Research and Programs, International Center for Research on Women, Washington DC.

 The purpose of this review is to identify promising interventions which can reduce or remove stigma and discriminations or that might reverse their effects to contribute to health behavior that enhance child health and development outcomes in low and middle income countries. ◦ Limited number of published papers. ◦ Very little information about the interventions ◦ Broadening the concept of stigma and discrimination to link with marginalization and social exclusion  Stigma is a complex phenomenon and is not a stand alone issue. ◦ Stigma is socially, culturally defined and stigmatization is a social process. ◦ Stigma and discrimination are profoundly political; they are about informal and formal (legal) social control, hierarchy, and exclusion through “shame and blame.” ◦ Stigmatization 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. ◦ Stigma is manifested as felt stigma, enacted stigma, individual discriminations, structural discriminations – accumulated institutional practices. ◦ Effects impede or divert child health, development outcomes and pathways.

 Many studies that cite stigma don’t measure it, or don’t investigate and measure its causes and consequences.  Lack of unifying framework and common measures impedes comparison, compiling, and generalizing conclusions.  When interventions are multifaceted it is critical to specify the discrete elements that might have affected stigma, as well as stigma outcomes.  Challenge is to establish clear causal models and common, or comparable instruments, to permit more accumulation of knowledge.  An extensive range of tools and models now exist for identifying and measuring HIV-related stigma in specific communities and institutions such as health-care facilities ◦ A 2009 review identified 22 published, validated scales that measure some part of the stigma process.

 HIV related stigma in the context of PMTCT ◦ ERT5 found no studies that evaluated stigma-reduction interventions for pregnant women living with HIV ◦ Yet, modeling data suggest that stigma reduction could reduce infant infections by as much as 33% (Watts et al. 2010) ◦ Evidence from community and institutional interventions suggests that:  Supportive networks (e.g. of PLHIV; key populations, etc.) play a critical role in helping strengthen capacity of marginalized communities to reduce internalized stigma & protest discrimination  Interventions using a combination of sensitization and participatory activities and/or clear policy guidance can reduce stigma

 Neonatal survival and health ◦ Evidence is moderate to weak ◦ Addressing stigma and discrimination at all stages leading up to the newborn’s entry into the world, during delivery and, shortly after birth are critical to ensuring survival and good health outcomes among neonates ◦ Interventions designed to reduce discriminatory practices among health-care providers are key to increasing neonatal health and survival of stigmatized groups; this can include rural poor. ◦ Education to 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  Parenting skills are important but there are limited evidences from low income countries – majority of evidence is from Europe and North America ◦ Both low- and high-income countries demonstrate how poverty can significantly endanger the wellbeing of children and families ◦ Maternal health and emotional status affect infant functioning  Maternal depression is strongly associated with risk factors that may be stigmatized  Social support for women in the intervention group resulted in reduced risk of depression and increased problem solving skills ◦ It is important to remember that poverty can be stigmatizing – i.e. invites negative social judgements about worth and dignity that lead to discriminatory treatment

 Nutrition ◦ Stigma was not addressed directly or indirectly in reference to childhood nutrition. Interventions target high poverty groups, food insecurity, nutritional deficiency and childhood negative developmental outcomes ◦ Longitudinal studies of interventions that promote gender equity and the empowerment of women indicated reduction in severe malnutrition and child mortality rate ◦ Nutrition education to husbands and mother-in- laws as change agents was effective in South Asian countries

 Structural discrimination – poverty, marginalized groups and child survival ◦ Millions of children in resource-poor settings and marginalized groups die unnecessarily from pneumonia and diarrhea, reflecting lack of prioritization and investment in effective interventions to prevent these conditions. ◦ Ideologies about the poor ◦ Human rights principles and treaties dictate the necessity to strive for equal opportunity for health for children and parents who suffer marginalization or discrimination. ◦ Strategic advocacy for universal access and equitable, pro-poor social policies (e.g. social protection) can counter structural discrimination.

 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, 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 an important approach to achieve population level behavioural changes that support child health interventions.  More collaboration is needed between child health specialists and social and political scientists, to develop and test interventions addressing social causes of child illness at the population level.