Reducing Stigma and Discrimination to Improve Child Health and Survival in Low- and Middle-Income Countries: Promising Approaches and Implications for Future Research

"Children’s well-being is a function of their environmental experiences and their opportunities to meet their potential. Stigma and discrimination related to social standing and health can significantly affect child health by impeding or diverting child health and development outcomes and pathways."

This article describes the reasons for and the process and results of a literature review to identify interventions for reducing the stigma and discrimination that impede child health and well-being in low- and middle-income countries, with a focus on nutrition, HIV/AIDS, neonatal survival and infant health, and early child development. It was written through work of an evidence review team (ERT) to address the goals of the Evidence Summit on Enhancing Child Survival and Development in Lower- and Middle-Income Countries by Achieving Population-Level Behavior Change, which was held in Washington, DC, United States (US), June 3-4 2013. It was hosted by the United States Agency for International Development (USAID), in collaboration with the United Nations Children's Fund (UNICEF) and the National Institute of Mental Health, Eunice Kennedy Shriver National Institute of Child Health and Human Development, the Centers for Disease Control and Prevention, The Communication Initiative, and the American Psychological Association. The summary below is part of a special issue of the Journal of Health Communication that is a product of the Evidence Summit.

Because, as stated by the ERT, "while the literature demonstrates that poverty and social exclusion are often stigma-laden and impede adult access to health information and services, and to education relevant to family planning, child rearing, nutrition, health promotion, and disease prevention, the child health literature does not document direct connections between these known mediators of child health and the stigmatization of either children or their caregivers." However, research does show that HIV-related stigma amplifies the negative effects of loss and economic deprivation resulting from parental illness, disability, and death of children affected by HIV. Thus, this review "sought to identify research on interventions that aimed to reduce stigma and discrimination in order to promote child health in low- and middle-income countries, with the aim of identifying characteristics of interventions that were effective and could produce population-level impact. The review included stigma related to major causes of child morbidity and mortality, including nutrition, malaria, acute respiratory illness, diarrheal disease, and immunization, but focused primarily on stigma associated with HIV and AIDS because of greater literature in this area...."

Using a framework of "six domains that together constitute the stigmatization process, including drivers, facilitators, intersecting stigmas, manifestations of stigma, outcomes of stigma, and impacts of stigma" applied to a literature search, a call for evidence, and the ERT's own resources, the review divided findings into five sections: "(a) HIV-related stigma in the context of PMTCT [prevention of mother-to-child transmission]; (b) neonatal survival, and health; (c) healthy early childhood development; (d) nutrition; and (e) marginalized groups; and child survival":

a) The document describes the PMTCT cascade as the constituent steps for uptake of and adherence to prevention and treatment services. While literature indicates that uptake at each step is likely affected by stigma, the researchers "could find no published studies that evaluated stigma-reduction interventions for pregnant women living with HIV or the direct impact of HIV-related stigma on the uptake of PMTCT services. However, a growing body of literature suggests that interventions to reduce negative attitudes toward people living with HIV (PLHIV) among community members, and anticipated and internalized stigma among HIV-infected pregnant women, may together improve HIV-related care outcomes for this population. Evidence shows that interventions using a combination of sensitization and participatory activities can reduce stigma in health care and community settings....[H]owever, promising practices to draw upon...involve a combination of strategies and approaches, engage a broad range of stakeholders, address intersecting stigmas, and are led by or actively engage communities experiencing stigma" and include "four types, including (a) information-based approaches, (b) skills building, (c)  counselling support, and (d) contact with affected groups. These broad categories encompass a range of different intervention activities, such as training sessions, participatory learning, support groups, holding community meetings, using cultural mediums and media channels, and providing written materials with specific information of local relevance....Evaluation data from stigma reduction interventions show that the more activities a respondent reports exposure to, the larger the increase in awareness of stigma, and decrease in fear and social judgment….Multiple activities not only reinforce messages, but provide ongoing opportunities to engage on the issue, learn, and begin to change attitudes and behaviors. In addition, different activities reach and appeal to different segments of the community...

[A]nother key element ...is the involvement of gatekeepers and multiple change agents, such as local government leaders, teachers, police, media, and health care providers....Building commitment to and ownership of the stigma reduction process among community leaders is crucial for obtaining buy-in from the larger community. To cultivate community leaders as champions for stigma reduction, it is important to build their knowledge of HIV, AIDS and stigma; provide opportunities for them to address their own fears, misconceptions, and attitudes; and build their capacity to reduce stigma. These leaders help raise awareness and reduce fear within the community, facilitating a shift in community norms....[E]vidence gathered from community-led interventions highlights the critical role that supportive networks play in helping strengthen capacity of marginalized communities to reduce stigma and discrimination. Involving marginalized communities is essential for strengthening capacity, ensuring appropriate messaging, and maximizing results....Additionally, addressing self-stigma effectively is an important precondition for effective engagement of marginalized communities."  

b) Though evidence for interventions on neonatal survival and infant health that address stigma and discrimination is "moderate to weak", there is evidence suggesting that the "provision of information in community settings is an important mechanism to increase knowledge among groups that typically underuse available services," especially in marginalised communities, promoting birth and emergency preparedness and care seeking from trained providers. It can improve equity in care provision across different religious and caste categories and, thus, maternal knowledge and birth outcomes. Attention to where and how information is provided can capitalise on social support structures to facilitate the acquisition of health information. Also, "[t]here is some evidence from studies of disadvantaged groups in high-income countries that social support plays an important role in behavioral change in mothers." Service locations and the ‘one-stop shop’ clinic model may increase service uptake among marginalised communities. Reducing discriminatory practices among health care providers is a key to reducing neonatal health and survival, particularly for HIV-positive mothers. For example, in a Kenyan community with a high rate of HIV infection and low rate of childbirth in a health setting, a study concluded that sensitivity training and increasing knowledge and access to postexposure prophylaxis among health workers "may reduce health care workers’ unwillingness to attend births of women who are living with or are suspected to be living with HIV."

c) For early childhood development (ECD), documented influences include poverty, family stress, caregiver health and mental health status, and exposure to violence, which can result from stigma and discrimination. "[T]here is moderate evidence that there are interventions targeting HIV stigma that yield positive attitudinal shifts and increased knowledge in families, care providers, and communities ..., and such changes can serve as the basis for behavioral changes that facilitate children’s physical, cognitive, and social growth....[S]upportive interventions include self-help and solidarity, education and empowerment, care, decriminalization and legal representation, safety and protection, and community-based child protection networks." Community-based interventions that address discrimination can improve equity by increasing service provision and family capacity to access services in underserved or marginalised groups.

Evidence on maternal depression, a factor affecting ECD outcomes, suggests that participatory social support for women can result in reduced risk of depression and increased problem-solving skills. Studies were identified that suggest a benefit to child health and development from parent disclosure of HIV status to their children. "That is, dispelling misconceptions about the disease and fostering an openness that can help ameliorate the potential impact of stigma on children’s developmental outcomes after their parents have died." Also, a study on a model to address many of the barriers to open communication about paediatric HIV found that it promoted healthy psychological adjustment and better treatment adherence in children living with HIV.

d) The ERT "did not identify any studies that specifically addressed the stigmas around childhood nutrition, although we did find intervention on stigmas around food insecurity more broadly." Some studies documented the relationship of malnutrition to delayed entry into school and lack of economic opportunity, as well as school achievement. Stigma can affect access to food pantries and the quality of food available, drawing the affect of stigmatisation into the cycles of poverty and structural barriers leading to malnutrition.

e) Marginalisation of groups due to stigma, as stated here, can lead to decreased access to child health services and increased morbidity and mortality. "As a consequence, unhealthy birth spacing, diarrheal diseases and pneumonia disproportionately affect poor and marginalized groups." These groups often do not know that "mortality, morbidity, and poor nutritional status are often associated with short birth intervals, and are preventable." They are unaware of the various options to achieve longer childbearing intervals, including breastfeeding, modern contraceptive methods, abstinence, and natural family planning. "Three Millennium Development Goals deal with combatting extreme poverty and improving children’s life chances through access to education and health information and services. In 2012, countries committed to implement a social protection floor that would guarantee that their populations have access to a basic package of health, education and income benefits."

The authors conclude that stigma and discrimination, social exclusion and their impact on children should not be viewed in isolation, as they interact in every level of society. "Moving forward, it is critical for the research community and policy planners to (a) evaluate the success of interventions that proactively include marginalized groups and respect their knowledge and dignity; (b) use the presence of stigma and discrimination, including differential neglect and exclusion, as indicators of quality in child health intervention programs; (c) explore and expand upon the domains of stigma that have been defined from the HIV field, to inform programming and research on stigma and social exclusion in an array of child health outcomes; and (d) deal head on with the phenomena of stigma and discrimination as a significant barrier to a child’s heath."