Stigma as a dominant discourse in fetal alcohol spectrum disorder

Abstract

Purpose The purpose of this paper is to conduct a scoping review of the literature to explore the many ways stigma affects people with FASD and to highlight the disciplines and places where discourse on FASD and stigma is taking place. Design/methodology/approach Searches were conducted in PubMed, ERIC, Family & Society Studies Worldwide, Families Studies Abstracts and Google Scholar between 2008 and 2018. Search terms focused on stigma, shame and the connection to FASD with a view to looking across social and medical science literature. Findings Searches identified 39 full text manuscripts, 13 of which were included in the scoping review. Stigma toward people with FASD exists in multiple professional forums across disciplines. The relationship between mother’s use of alcohol and the lasting impact on the child is a focus in the articles identified from a public health perspective. The review showed there was limited cross-disciplinary discussion evident. In total 13 articles were selected for inclusion in this review. Research limitations/implications Negative discourses predominate with little attention being paid to possible areas of success as well as cases of lower FASD impacts. There is a significant void in work focusing on positive outcomes for people with FASD. Such discourse would support a better understanding of pathways to more positive outcomes. Originality/value This paper highlights the issue of FASD and stigma through identification of relevant literature and expands the conversation to offer insights into the challenging terrain that individuals with FASD must navigate. The issue of stigma is not linked only to individuals with FASD but also their support systems. It is critical to recognize the multiple attributions of stigma to FASD in order to effectively take up conversations across and between disciplines to promote new discourses focused on de-stigmatization.

How Personal Perspectives Shape Health Professionals’ Perceptions of Fetal Alcohol Spectrum Disorder and Risk

“…Professionals have a key role in stigma reduction through FASD-informed practice. This means a solid grounding in knowledge on FASD from a family systems perspective and engagement in trauma-informed practice while building supportive relationships with families and communities [36].…”

Fetal Alcohol Spectrum Disorder: What does Public Awareness Tell Us about Prevention Programming?

“…The data also indicates that formal support is an important source of support and knowledge. Choate and Badry [10] found that stigma is a major concern in how women experience interactions with professionals and formal support. Thus, if mothers are able to connect with these supports, that connection is likely to be sustained if the mother is accepted even when struggling with continuing use.…”

“…Harm reduction might be one such opportunity. This is worth exploring in more detail as it may shift away from abstinence and stigmatizing messages [10] to ones where traumatized populations may be able to see their lived realities in the messages [27]. This may include acknowledging environmental factors that contribute to the ongoing alcohol use in this population, such as homelessness and lack of social support.…”

“…FASD prevention occurs through multiple channels, which include public messaging campaigns, community-based educational programs, outreach, public health programs, direct work with pregnant mothers or those who may become pregnant, criminal justice, and child welfare settings. There are also multiple professions involved, including nursing, social work, midwifery, medicine, and criminal justice [6,10,11].…”

“…It is not possible to consider FASD messaging as separate from the shame, guilt, and stigma experienced by those diagnosed with the disorder or for the mothers who have delivered a child alcohol-exposed [8,10,11]. The prominent messaging that FASD is a “100% preventable disorder” acts as a foundational message that by just not drinking during pregnancy, the disorder can be prevented, but this does not account for the complexities of women’s lives [12].…”