Full length articleAddressing the public health concerns of Fetal Alcohol Spectrum Disorder: Impact of stigma and health literacy
Introduction
Fetal alcohol spectrum disorders (FASD) are a group of developmental disabilities that may result when a developing fetus is exposed to alcohol (Jones and Smith, 1973). FASD can have pervasive effects on children’s cognitive and social development, leading to significant disability. Estimates suggest that FASD impacts 2–5% of children in the U.S. and Western Europe (May et al., 2014; May et al., 2009). As a result, educating women about the dangers of alcohol consumption during pregnancy has become a public health priority (CDC, 2017). This includes advising women on the use of effective birth control if they decide to consume alcohol during childbearing years. Research into behavioral health promotion has found two factors that impact public education campaigns: stigma and health literacy (National Academy of Sciences, 2016). The purpose of this study is to test hypotheses about the impact of stigma and health literacy on the public health agenda for preventing FASD.
Research distinguishes public stigma (the discrimination applied to a group when the population endorses stereotypes about that group) and self-stigma (the harm to self-esteem when a personal internalizes stereotypes about themselves; Evans-Lacko et al., 2012). Research fairly consistently suggests the public stigma of mental health and substance use disorders undermines engagement in primary, secondary, and tertiary prevention (Corrigan et al., 2014). For example, people with serious mental illness are likely to avoid psychiatric care in order to escape the egregious effects of stigmatizing labels, thereby exacerbating the chronic and disabling course of their illness. Public stigma similarly undermines primary prevention campaigns meant to impact behavioral health conditions (Rusch and Thornicroft, 2014). The focus in this paper is on the public stigma bestowed upon biological mothers of children with FASD and women who drink during pregnancy. Difference and disdain are one set of stigma markers (Corrigan et al., 2015; Link and Phelan, 2001). People with mental illness, for example, are seen as different from everyone else and disdained as a result. One study showed that biological mothers of children with FASD are viewed as more different and with greater disdain than women with several other behavioral health conditions including mental illness, substance use disorder, and jail experience (Corrigan et al., 2017a, Corrigan et al., 2017b). Hence, we expect to show that people who endorse public stigma towards biological mothers of children with FASD are less likely to endorse the goals of public health programs for FASD.
A lesser-known question is the extent to which stigma of one condition generalizes to another (Link et al., 2004). For example, does the stigma of a serious mental illness like schizophrenia extend to more benign disorders such as depression? Of interest here is whether the stigma experienced by biological mothers of children with FASD generalizes to “at-risk” women: that is, women who consume alcohol while pregnant. The public might perceive the stigma of biological mothers of children with FASD to be “strange or alien” – and therefore of less importance in defining the public health agenda. We examine the generalization effect in this study.
Engagement in prevention programs is also influenced by health literacy, the degree to which individuals accurately understand the impact of a health condition and interventions meant to remediate it (Sorensen et al., 2012). People who are more familiar with the symptoms and disabilities of mental health or SUD challenges, as well as the range of evidence-based interventions meant to treat them, are more likely to engage in prevention (Jorm, 2012). We similarly expect people more familiar with FASD will be more likely to endorse prevention priorities for it. Research also suggests that health literacy is inversely related to stigma; i.e., those who know more about a mental health condition are less likely to stigmatize it (Jorm, 2012). Hence, we expect to show FASD literacy to be inversely associated with stigma of biological mothers of children with FASD.
Finally, the object of the FASD stigma examined in this paper – a biological mother of a child with FASD or a woman who drinks during pregnancy – and its impact on the public health priority, is obviously limited to females. However, men are included in the study because their stigma and health literacy may play an important role in the public health agenda. As partners of at-risk women, they may influence the women in regards to alcohol use while pregnant. For example, some men might ignore public health prescriptions, telling their partner it is okay to drink while they are pregnant. A final exploration of this paper is how the perceptions of the public health agenda, stigma, and health literacy vary by gender.
Section snippets
Materials and methods
Adults were solicited to participate in this study using Amazon’s Mechanical Turk (MTurk), a crowdsourcing internet marketplace network that, among other things, is used to solicit participants for social science research. More than 100,000 workers from the United States are registered with MTurk (Pontin, 2007). Research is mixed regarding the degree to which demographics of MTurk workers match the US population (Buhrmester et al., 2011; Paolacci et al., 2010; Ross et al., 2010), though this is
Results
Demographics of research participants are summarized in Table 1. The sample was 53.1% female; no one identified as transgender. On average, the sample was 35 years old. Ethnic distribution reflected the U.S. census, with 83.3% of participants identifying as European American and 10.9% as African American. The sample was not over-educated, with 25.8% reporting no more than a high school education. Participants were mostly heterosexual (91.8%), and employed (83.6%) with income above the U.S.
Discussion
The present study examined the effects of health literacy and stigma on the endorsement of public health priorities related to FASD. Results about health literacy were as hypothesized. Research participants with higher FASD literacy scores were more likely to endorse the public health priorities of FASD; i.e., FASD is a major public health concern, women should not consume alcohol while pregnant, and women should use reliable birth control if they consume alcohol during childbearing age. Note
Role of funding source
No external funding.
Contributors
All investigators contributed equally to design, implementation, analyses, and write-up. All authors have read and approved the final manuscript.
Conflict of interest
None.
Acknowledgement
None
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