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Stigmatisation, Exaggeration, and Contradiction: An Analysis of Scientific and Clinical Content in Canadian Print Media Discourse About Fetal Alcohol Spectrum Disorder
Abstract
Background: Fetal alcohol spectrum disorder (FASD), a complex diagnosis that includes a wide range of neurodevelopmental disabilities, results from exposure to alcohol in the womb. FASD remains poorly understood by Canadians, which could contribute to reported stigma faced by both people with FASD and women who drink alcohol while pregnant. Methods: To better understand how information about FASD is presented in the public sphere, we conducted content analysis of 286 articles from ten major English-language Canadian newspapers (2002-2015). We used inductive coding to derive a coding guide from the data, and then iteratively applied identified codes back onto the sample, checking inter-coder reliability. Results: We identified six major themes related to clinical and scientific media content: 1) prevalence of FASD and of women’s alcohol consumption; 2) research related to FASD; 3) diagnosis of FASD; 4) treatment of FASD and maternal substance abuse; 5) primary disabilities associated with FASD; and 6) effects of alcohol exposure during pregnancy. Discussion: Across these six themes, we discuss three instances of ethically consequential exaggeration and misrepresentation: 1) exaggeration about FASD rates in Indigenous communities; 2) contradiction between articles about the effects of prenatal alcohol exposure; and 3) scientifically accurate information that neglects the social context of alcohol use and abuse by women. Respectively, these representations could lead to harmful stereotyped beliefs about Indigenous peoples, might generate confusion about healthy choices during pregnancy, and may unhelpfully inflame debates about sensitive issues surrounding women’s choices. All Rights Reserved ©, 2019 John Aspler, Natalie Zizzo, Emily Bell, Nina Di Pietro, Eric Racine
... Public stigma towards women who consumed alcohol during pregnancy, non-biological parents and guardians of individuals with FASD, and individuals with FASD have been reflected in mass media (Armstrong and Abel 2000;Aspler et al. 2019;Eguiagaray et al. 2016), often in the form of well-intended prevention messages. Eguiagaray et al. (2016) explored the framing of FASD-related media coverage in Australia and found that messages about FASD were framed in two ways. ...
... Healthcare professionals were blamed for not raising concerns about alcohol consumption with pregnant patients, and the government was critiqued through messages depicting the lack of policy support and governmental actions (e.g., "cone of silence"). In similar vein, Aspler et al. (2019) analyzed the content of newspaper articles mentioning FASD in Canada for key themes. They identified three topics of ethical concern that can lead to stigmatization. ...
... These were (i) exaggeration of FASD prevalence estimates observed in Indigenous communities; (ii) conflicting information on the harmful effects of alcohol; and (iii) narrow scientific information. Both Aspler et al. (2019) as well as Eguiagaray et al. (2016) pointed to the need to be more cognizant of the possible negative effects of FASD prevention messages. ...
Alcohol consumption during pregnancy can lead to fetal alcohol spectrum disorders (FASD). FASD is a spectrum of structural, functional, and neurodevelopmental problems with often lifelong implications, affecting communities worldwide. It is a leading preventable form of intellectual disabilities and therefore warrants effective prevention approaches. However, well-intended FASD prevention can increase stigmatization of individuals with FASD, women who consume or have consumed alcohol during pregnancy, and non-biological parents and guardians of individuals with FASD. This narrative review surveyed the literature on stigmatization related to FASD. Public stigma appears to be the most common form of stigma studied. Less is known about FASD-related self-stigma, stigma by association, and structural stigma. Accordingly, the current literature on FASD-related stigma does not appear to provide sufficient guidance for effectively reducing FASD-related stigma. However, lessons can be learned from other related health topics and the use of a systematic approach for the development of health promotion programs, namely Intervention Mapping.
... Notably, several studies (n = 4) related to ethics and the stigma surrounding FASD and CLS involvement were considered at the full text stage and ultimately excluded. Although these studies were relevant and contributed new evidence (i.e., portrayals of FASD in the media, Aspler et al., 2019), they were ultimately determined not to meet inclusion criteria because they did not directly involve people with FASD and/or those who support them. ...
... Indeed, Indigenous caregivers spoke of the potential for unique stigma and shame following diagnosis of youth involved in the CLS . These findings reflect other research on public narratives surrounding the intersection of FASD and the CLS (Aspler et al., 2019(Aspler et al., , 2018Aspler, Bogossian, & Racine, 2022;Aspler, Harding, & Cascio, 2022) and the racialization of FASD and compounding harms for Indigenous peoples involved in the CLS (Dickson & Stewart, 2022;Tait, 2003). Together these findings raise critical questions around public and professional perceptions of FASD, stereotypes, discrimination, racism, and practical and ethical implications of the ways in which FASD is perceived and understood within CLS contexts. ...
... Another layer of stigma that is unique to FASD is the shame and blame that is targeted toward women and mothers (Corrigan et al., 2017). FASD has been inextricably linked to women's behavior and mothers are often held responsible for "victimizing" (Aspler et al., 2019) or "causing" harm to their child (Bell et al., 2015). This stigma can be particularly harmful as it impedes women from seeking support or discussing alcohol consumption with care providers out of fear of judgment, child removal, or incarceration (Poole et al., 2016). ...
... Another unique layer of stigma in FASD exists at the sociocultural level, whereby it is commonly, and incorrectly, misperceived to be an "Indigenous issue" (McKenzie et al., 2016;Aspler et al., 2019). In fact, there are no recent or rigorous prevalence studies to support this misconception (Flannigan et al., 2018). ...
Fetal alcohol spectrum disorder (FASD) is a multifaceted disability, characterized not only by brain- and body-based challenges, but also high rates of environmental adversity, lifelong difficulties with daily living, and distinct sociocultural considerations. FASD is one of the most common neurodevelopmental disabilities in the Western world and associated with significant social and economic costs. It is important to understand the complexities of FASD and the ways in which FASD requires unique consideration in research, practice, and policy. In this article, we discuss our perspectives on factors that distinguish FASD from other disabilities in terms of complexity, co-occurrence, and magnitude. We provide an overview of select literature related to FASD as a socially rooted disability with intergenerational impacts and multiple layers of stigma. These social issues are intertwined with notable experiences of adversity across the lifespan and high rates of co-occurring health concerns for individuals with FASD, all of which present unique challenges for individuals, caregivers, families, service providers, and policy makers. Understanding these factors is the first step in developing and implementing specialized initiatives in support of positive outcomes for individuals with FASD and their families. Future directions are proposed for advancing research, practice, and policy, and responding to the unique complexities of FASD.
... Further, these stigmatizing portrayals may impact public perceptions of addiction and mental illness, how US courts address these issues, and how public health authorities employ health promotion strategies. Aspler and colleagues explored how information about fetal alcohol spectrum disorder (FASD) is presented in the Canadian print media and found evidence of "ethically consequential exaggeration" about FASD and women's alcohol consumption, and particularly how it is represented in Indigenous communities (30). In another international study of addiction discourses in news media, Bujalski and colleagues suggest that from 1991 to 2011 the media in Finland, Italy and Poland increasingly presented issues related to substance use in two ways: in terms of scientific advancements and from the perspective of individualism (14). ...
... Individuals are positioned as responsible for developing their liver disease, treating their ARLD, and maintaining their transplant. These findings are consistent with results from media analyses of addiction discourses in Canada, Italy, Finland, and Poland that found increasing rates of individualization, where personal responsibility is ascribed to people living with addictions (14,30,31). Positioning people as personally responsible for their ARLD is a moralizing action that is aligned with ingrained social and cultural values in North America and the UKwhich include neo-liberal values of productive citizenship, vulnerability, risk and self-controlvalues thought to be threatened by people who consume high volumes of alcohol or other substances (52). ...
Alcohol-related liver disease (ARLD) is a common indication for liver transplantation yet it is considered ethically controversial in academic, clinical and public discourses. Various social groups consider people with ARLD as personally responsible for their condition and question whether they should have access to a scarce resource. How the news media constructs responsibility for ARLD may influence public opinions toward those who are ill as well as related healthcare policies. Since the organ transplantation system relies on the willingness of individuals to donate organs, understanding how the media portrays controversial issues is a matter of vital importance for public health and health policy. We investigated how responsibility for ARLD requiring liver transplantation is presented for public consumption in the news media. Using a keyword search of two online news databases, we selected 81 articles from the United Kingdom, Canada and the United States. We analyzed the articles using a discursive psychological approach. We found that the news media ascribed responsibility for ARLD to three main actors: individuals with ARLD, biological predisposition, and policy and industry representatives. How responsibility for ARLD requiring liver transplantation is presented in the news media may have implications for people diagnosed with other substance-related disorders who present for transplant candidacy or are on the transplant waiting list. Investigating how responsibility for ARLD is constructed in news media may provide insights into how responsibility is understood in other stigmatized health conditions and its potential implications for population health equity.
... Stigma and discrimination are further barriers to treatment and support and may limit the effectiveness of such communication (Aspler et al., 2019;De Jong et al., 2021). Relationships between FASD, drinking behaviors, and historical and contemporary trauma have been reported in other countries with population groups of lower socio-economic status, such as Australia and Canada (Fitzpatrick et al., 2015;Salmon, 2011). ...
Background
Maternal risk factors for having a child diagnosed on the fetal alcohol spectrum disorders (FASD) continuum are complex and include not only the quantity, frequency, and timing of alcohol use but also a woman's physical stature, socio‐economic status, and pregnancy‐related factors. Exposure to trauma may predispose women to a range of physiological and mental disorders. A woman's mental and physical health may in turn influence her probability of having a child with FASD. This study investigated the role of maternal childhood trauma and lifetime traumatic stress on prenatal alcohol consumption and on the risk of having a child with FASD.
Methods
A nested, case‐control study was conducted for maternal risk assessment. Study participants were mothers of first‐grade learners from five rural communities in the Western Cape Province of South Africa who were assessed for FASD. Face‐to‐face surveys were conducted, which included mental health and trauma assessment questionnaires.
Results
In logistic regression analyses, higher maternal childhood trauma scores were associated with an increased likelihood of having a child diagnosed with FASD, although the increase in risk was modest (OR = 1.014, p = 0.015). In addition, structural equation modeling investigated relationships between maternal drinking, childhood trauma, traumatic stress, and a child's FASD diagnosis. Traumatic stress and drinking during pregnancy, but not lifetime alcohol use, were associated with maternal childhood trauma. Lifetime alcohol use influenced drinking during pregnancy, which in turn was significantly associated with having a child diagnosed on the continuum of FASD.
Conclusion
No direct influence of maternal childhood trauma on FASD diagnosis could be demonstrated. However, maternal trauma may indirectly contribute to the risk of having a child diagnosed with FASD.
... 59 The ongoing media portrayals of women who use alcohol and other substances during pregnancy may perpetuate the narratives of victimhood or shame, where mothers are viewed as irresponsible, immoral, or villainous. 20,21 Public stigma towards women who consume alcohol during pregnancy is high, 60 and even among individuals impacted by FASD (i.e., individuals with FASD, biological mothers, other relatives, and healthcare providers), biological mothers of individuals with FASD are often viewed as child abusers, in denial, secretive, and/or ignorant. 61 Collectively, these narratives serve to reinforce the existing discourses about the perceived 'type' of women who drink during pregnancy and suggest that it is okay for some women to drink during pregnancy, but not for others. ...
Background and objective
Pregnant women, women of childbearing age, and their partners frequently report obtaining information about alcohol use during pregnancy from the mass media. Relying on mainstream media sources, such as television, can be problematic when the information presented is inaccurate, contributing to inconsistent messaging about the ‘safety’ of alcohol use during pregnancy. In the current study, we aimed to explore the portrayal of alcohol (and substance) use (e.g., tobacco, opioids) during pregnancy in North American, English speaking mainstream prime time and streaming television shows ( N = 25). To the authors’ knowledge, no previous study has explored the representations of alcohol (and/or substance use) during pregnancy in this context.
Materials and methods
The following inclusion criteria guided the show selection: (1) top 100 shows on cable/streaming services targeting women aged 18 to 49 years, and (2) shows suggested by targeted social media posts. Using ethnographic content analysis (ECA), the content and role of television media narratives in the social construction of alcohol meanings concerning the safety of alcohol use during pregnancy were explored.
Results and conclusion
In line with ECA, the results and conclusion are discussed together. The results and discussion are presented under an overarching narrative, the dichotomy of women's alcohol and substance use, which illustrates the sociocultural construction of alcohol and substance use during pregnancy. Within this overarching narrative, we focus on two sub-narratives: (1) women's acceptable use and (2) women's villainous use. Our analysis indicates misrepresentations regarding the safety of alcohol use during conception (e.g., Friends from College) and pregnancy (e.g., How I Met Your Mother, The Mindy Project). In addition, a narrative was identified relating to the difficulty of keeping a pregnancy private when not drinking socially (e.g., Friends, The Office). These narratives reinforced a dichotomy between the types of women who drink during pregnancy, including some for whom it was okay to have ‘just a little bit’ (e.g., How I Met Your Mother, The Big Bang Theory, Black Mirror) in contrast to others who were portrayed as villains who engaged in binge drinking behaviour and/or other comorbid substance use (e.g., Grey's Anatomy, Private Practice, Chicago Med, Law & Order). These results demonstrate the need to provide a clear, consistent messaging about the risks of alcohol use during pregnancy, as mixed messages from television can contribute to misinformation. The recommendations for messaging, as well as changing our approaches to fetal alcohol spectrum disorder prevention in the light of these findings are discussed.
... 59 The ongoing media portrayals of women who use alcohol and other substances during pregnancy may perpetuate the narratives of victimhood or shame, where mothers are viewed as irresponsible, immoral, or villainous. 20,21 Public stigma towards women who consume alcohol during pregnancy is high, 60 and even among individuals impacted by FASD (i.e., individuals with FASD, biological mothers, other relatives, and healthcare providers), biological mothers of individuals with FASD are often viewed as child abusers, in denial, secretive, and/or ignorant. 61 Collectively, these narratives serve to reinforce the existing discourses about the perceived 'type' of women who drink during pregnancy and suggest that it is okay for some women to drink during pregnancy, but not for others. ...
Background and objective: Pregnant women, women of childbearing age, and their partners frequently report obtaining information about alcohol use during pregnancy from the mass media. Relying on mainstream media sources, such as television, can be problematic when the information presented is inaccurate, contributing to inconsistent messaging about the ‘safety’ of alcohol use during pregnancy. In the current study, we aimed to explore the portrayal of alcohol (and substance) use (e.g., tobacco, opioids) during pregnancy in North American, English speaking mainstream prime time and streaming television shows (N = 25). To the authors’ knowledge, no previous study has explored the representations of alcohol (and/or substance use) during pregnancy in this context.
Materials and methods: The following inclusion criteria guided the show selection: (1) top 100 shows on cable/streaming services targeting women aged 18 to 49 years, and (2) shows suggested by targeted social media posts. Using ethno-graphic content analysis (ECA), the content and role of television media narratives in the social construc-tion of alcohol meanings concerning the safety of alcohol use during pregnancy were explored.
Results and conclusion: In line with ECA, the results and conclusion are discussed together. The results and discussion are presented under an overarching narrative, the dichotomy of women’s alcohol and substance use, which illustrates the sociocultural construction of alcohol and substance use during pregnancy. Within this overarching narrative, we focus on two sub-narratives: (1) women’s acceptable use and (2) women’s villainous use. Our analysis indicates misrepresentations regarding the safety of alcohol use during conception (e.g., Friends from College) and pregnancy (e.g., How I Met Your Mother, The Mindy Project). In addition, a narrative was identified relating to the difficulty of keeping a pregnancy private when not drinking socially (e.g., Friends, The Office). These narratives reinforced a dichotomy between the types of women who drink during pregnancy, including some for whom it was okay to have ‘just a little bit’ (e.g., How I Met Your Mother, The Big Bang Theory, Black Mirror) in contrast to others who were portrayed as villains who engaged in binge drinking behaviour and/or other comorbid substance use (e.g., Grey’s Anatomy, Private Practice, Chicago Med, Law & Order). These results demonstrate the need to provide a clear, consistent messaging about the risks of alcohol use during pregnancy, as mixed messages from television can contribute to misinformation. The recommendations for messaging, as well as changing our approaches to fetal alcohol spectrum disorder prevention in the light of these findings are discussed.
... For professionals and the public more broadly, stigma and bias can lead to individuals with disabilities being viewed as burdensome, villainous, or objects of pity, perpetuating negative outcomes such as social exclusion and employment discrimination (Aspler et al., 2018(Aspler et al., , 2019. Deficit-oriented framing and a predominant emphasis on negative outcomes can also adversely impact policy, decreasing incentive for governments or service agencies to develop and fund programs. ...
For many years, researchers have explored the complex challenges experienced by individuals with fetal alcohol spectrum disorder (FASD). This research has been important for documenting the brain‐ and body‐based impacts of prenatal alcohol exposure and the psychosocial vulnerabilities and environmental adversities frequently associated with FASD. It has also supported advocacy efforts and highlighted the necessity of providing FASD services and supports. However, with the focus on deficits and needs, there is a considerable gap in the literature on the strengths and successes of individuals with FASD. The lack of strengths‐based FASD research has likely perpetuated the stress and stigma experienced by individuals with FASD and their families. Thus, there is a critical need to shift the direction of the field. Here we provide a narrative review of the literature on strengths in FASD. Our goals are to: (1) understand the state of strengths‐based research related to individuals with FASD across the lifespan, and (2) describe positive characteristics, talents, and abilities of individuals with FASD that may be cultivated to promote their fulfillment and well‐being. We identified a total of 19 studies, most of which were conducted to explore the lived experiences of adults with FASD. This preliminary but critical body of evidence highlights the intrinsic strengths of individuals with FASD, including strong self‐awareness, receptiveness to support, capacity for human connection, perseverance through challenges, and hope for the future. Despite the importance of this emerging evidence, appraisal of the literature indicates a need for more intentional, methodologically rigorous, participatory, and theory‐driven research in this area. Findings from this study, including the identified gaps in the literature, can be used to inform research, practice, and policy to meaningfully advance the field of FASD and promote positive outcomes in this population.
... However, for those who use alcohol post-pregnancy recognition, intersecting contextual factors may influence their use, such as: peer influences and social pressures; limited provision of prenatal alcohol use risk information due to discomfort on part of health and social care providers to discuss alcohol use with women and their support networks; or conflicting or unclear information received from health care providers surrounding 'safe levels' of alcohol during pregnancy [15,16]. Confusion around what is safe may also result from women's exposure to conflicting messaging in public discourse, or from family and friends, the media, or online pregnancy content where information around healthy behaviours during pregnancy may be outdated, incorrect, or not evidence based [17,18]. ...
Understanding the factors that contribute to women’s alcohol use in pregnancy is critical to supporting women’s health and wellness and preventing Fetal Alcohol Spectrum Disorder. A systematic review of qualitative studies involving pregnant and recently postpartum women was undertaken to understand the barriers and facilitators that influence alcohol use in pregnancy (PROSPERO: CRD42018098831). Twenty-seven (n = 27) articles were identified through EMBASE, CINAHL, PsycINFO, PubMed and Web of Science. The included articles were thematically analyzed using NVivo12. The analysis was informed by Canada’s Action Framework for Building an Inclusive Health System to articulate the ways in which stigma and related barriers are enacted at the individual, interpersonal, institutional and population levels. Five themes impacting women’s alcohol use, abstention and reduction were identified: (1) social relationships and norms; (2) stigma; (3) trauma and other stressors; (4) alcohol information and messaging; and (5) access to trusted equitable care and essential resources. The impact of structural and systemic factors on prenatal alcohol use was largely absent in the included studies, instead focusing on individual choice. This silence risks perpetuating stigma and highlights the criticality of addressing intersecting structural and systemic factors in supporting maternal and fetal health.
... Cultural stigma. Another unique layer of stigma exists at the sociocultural level, whereby FASD is commonly, and incorrectly, misperceived to be an "Indigenous issue" [48,49]. In fact, there are no recent or rigorous prevalence studies to support this misconception [50]. ...
Fetal Alcohol Spectrum Disorder (FASD) is a multifaceted disability, associated not only with complex brain- and body-based challenges, but also with high rates of environmental adversity, diverse sociocultural contexts, and lifelong difficulties with daily living. It is
important to consider the complexities of FASD, and the ways in which FASD requires unique considerations to develop and employ specialized research, practice, and policy initiatives in support of positive outcomes for individuals with FASD and their families.
... The public discourse around women who drink alcohol in pregnancy is characterized by both misinformation concerning 'safe' levels of alcohol consumption in pregnancy and stigma towards women who drink in pregnancy. The media's portrayal of women's alcohol use in pregnancy often perpetuates narratives of victimhood or shame, whereby mothers are seen as irresponsible, immoral, or villainous [29,30]. These narratives do not consider the many influences on women's substance use and perpetuate misconceptions of which groups of women use alcohol in pregnancy. ...
Women who use substances in pregnancy and/or have children with Fetal Alcohol Spectrum Disorder (FASD) are highly stigmatized by the media, public, and health and social service providers. Social isolation, non-disclosure of alcohol and/or substance use, and not seeking or receiving the necessary support can be the result.
... The public and media's representation of individuals with FASD can exaggerate individuals' behaviours, suggesting that all individuals with FASD are the same, and detract from the effectiveness of interventions and supports [21]. For example, when an individual is in the justice system, the media then suggests all individuals with FASD are criminals. ...
Stigma can negatively impact individuals with Fetal Alcohol Spectrum Disorder (FASD) and can decrease individuals’ capacity to access services and supports, while perpetuating feelings of shame and contributing to social isolation. Increased access to information about FASD must be shared with and amongst health and social service providers, teachers, and the media in order to reduce discrimination and other effects of stigma on individuals with FASD.
Fetal alcohol spectrum disorder (FASD) is a leading cause of neurodevelopmental disability globally. International organizations have highlighted an urgent need for improved prevention, diagnosis, and support. However, the evidence base needed to inform this is thought to be limited. We conducted two complementary reviews to (i) describe trends in the volume and characteristics of original FASD research articles (Review 1) and (ii) compare the volume of published research on FASD to that of other neurodevelopmental disorders (Review 2). In Review 1, we systematically searched MEDLINE, Embase, CINAHL and PsycInfo for original studies with FASD terms in the title, published between 2000 and 2023. We summarised study characteristics including the article topic(s), sample population, country of origin, and publication year using quantitative content analysis and time‐series plots. A total of 854 studies were eligible. Studies showed a relative focus on diagnosis and screening, compared to prevention and intervention. FASD research originated from 31 countries, however most countries (68%) had fewer than 10 articles published over the 23‐year review period. In Review 2, we searched PubMed for records published between 2000 and 2023 with FASD, autism, or attention‐deficit‐hyperactivity disorder (ADHD) terms in the title. We compared the volume of records for these conditions using descriptive statistics and time‐series plots. Of the 64,069 records retrieved, 2% were for FASD, compared to 60% for autism and 38% for ADHD. FASD remains considerably under‐researched. While there has been an increase in the number of original FASD research articles published annually over time, this is much lower than expected compared to publication trends for other neurodevelopmental conditions, and the wider scientific literature. Further research is needed to understand the impact of FASD across the lifespan, to inform evidence‐based policy and support, and to advance progress in strength‐based, stigma‐reducing approaches to FASD research and practice.
As the most consumed drug in the world, alcohol is well-characterized for its toxicity. Ethanol in alcoholic beverages can diffuse across cell membranes, the blood–brain barrier, and the placenta of developing fetuses, inducing oxidative stress, mitochondrial damage, and apoptosis/cell death. Importantly, alcohol is also a prominent teratogen that disrupts normal fetal developmental pathways and programs. Prenatal alcohol exposure is the most prevalent cause of neurobehavioral deficits in Western countries, creating long-term cellular damage that contributes to the development of fetal alcohol spectrum disorder (FASD). In this chapter, we discuss the widespread teratogenic effects of prenatal alcohol exposure, including perturbations to stem cell growth, cell cycle progression, and the activity of growth factors, glial cells, and neurons in the developing brain. We further address epigenetic consequences and impairments to a variety of subcellular mechanisms responsible for maintaining immune function and emphasizing the relationship between alcohol teratology and FASD symptomology.KeywordsStem cellsCell cycleGrowth factorsGliaNeuronsEpigeneticsImmunityCytokines
Overrepresented and often misunderstood, adverse outcomes such as justice system involvement have been a dominant storyline in the FASD literature; this is neither an inevitable outcome, nor one that will impact all individuals with FASD. Increased understanding of the mechanisms that influence development, behavior, and action should inform our recognition and response to this population in order to reduce intersections with the justice system. Additionally, an FASD-informed response within the system may help avoid cumulative impacts often reported once individuals with FASD become engaged within the system. In this chapter, we provide a synthesizing review of the vulnerabilities that exist for individuals with fetal alcohol spectrum disorder (FASD) and their involvement with the criminal justice system. We consider strategies for mitigating criminal justice system involvement and the commission of crimes and provide suggestions for a reasoned, compassionate, and evidence-informed approaches for effectively responding to both offending and associated underlying risk factors and needs among those with FASD. Overall, the intent of this chapter is to increase public awareness and facilitate action from policy developers, clinicians, legal, justice, and correctional personnel, and forensic professionals in order to inform improved prevention and response, ultimately supporting better individual and societal outcomes.KeywordsFetal alcohol spectrum disorderJustice systemOffenders with mental disorderReintegrationRehabilitationVulnerabilities
Progress on FASD intervention is at an important tipping point. This chapter is meant to accelerate treatment to improve life outcomes for individuals living with FASD, and their families. Starting with a brief history of treatment in the field, this chapter offers readers a comprehensive definition of “FASD-informed care.” First, conceptual models and findings from lived experiences research are integrated together to define 12 essential elements of FASD-informed care. Next, the current complement of published and in-process intervention studies systematically tested with those living with PAE or FASD, from infancy to adulthood, and their families, are presented and briefly discussed. Specific promising treatments from other fields are also offered to help advance research more quickly. The chapter culminates with a discussion of tasks facing the field of FASD intervention, presented as a series of dilemmas with solutions and action steps. Readers, including policymakers, are invited to take strategic action, make observable progress, and shape the future of intervention for FASD in a planful way. The ultimate goals for FASD intervention are to effectively support quality of life for individuals living with FASD or PAE, and their families, across the lifespan—and have communities lead in creating culture-centered practices.KeywordsFetal alcohol spectrum disorders (FASD)Prenatal alcohol exposureInterventionChildrenAdolescentsFamilies
The following review explores brain magnetic resonance imaging (MRI) literature in fetal alcohol spectrum disorders (FASD). A literature search was conducted utilizing PubMed and PsycINFO. Search terms included: “fetal alcohol spectrum disorders,” “prenatal alcohol exposure,” “FAS,” “FASD,” “PAE,” “neuroimaging,” “MRI,” “fMRI,” “DTI,” “MRS,” “infant,” “child,” “adolescent,” and “adult.” This resulted in 85 articles, with the majority published in the United States and South Africa. Individuals with prenatal alcohol exposure (PAE) demonstrated reductions in the volume of the total brain, corpus callosum, cerebellum, basal ganglia, and hippocampus. Major central and association white matter tracts also showed teratogenic effects. Abnormal functional connectivity is present throughout various regions, aligning with underlying structural abnormalities. Taken together, these alterations may support an understanding of the behavioral changes seen in individuals with FASD and PAE. Future research should focus on infant and early childhood, as well as middle age and older adults.KeywordsNeuroimagingFetal alcohol spectrum disordersPrenatal alcohol exposureMagnetic resonance imagingFunctional imagingDiffusion tensor imaging
Purpose
Child welfare services (CWSs) globally continue to absorb high rates of children living with or suspected of fetal alcohol spectrum disorder (FASD). Such high prevalence rates render CWS with major ethical and moral dilemmas of meeting complex needs. Currently, many jurisdictions are challenged by diagnostic capacity and cost implications of formal FASD diagnosis. This paper aims to recommend a screening protocol to address management gap between FASD initial presentation and formal diagnosis.
Design/methodology/approach
This is a follow-up paper from a grounded-theory study of a sample (N = 18) of child welfare social workers (CWSWs), allied health professionals and foster parents. A stepwise protocol was developed through systematical interpretation of the final data.
Findings
The application of a five-step screening protocol would greatly support CWSW in meeting the needs of children with suspected FASD. This CWSWs-led assessment model incorporates a clinical evaluation to exclude neurodevelopmental conditions caused by known genetic disorders, followed by behavioral and neurocognitive psychosocial assessments.
Research limitations/implications
This study had several limitations. Firstly, as a specific social work-based sample, it is not necessarily representative of the wider population of social workers globally due to different cultural responses to FASD in CWSs. The transferability of findings will have to be considered due to cultural variations concerning FASD.
Practical implications
By offering a management and nonlabeling approach, this five-step screening protocol offers a delineated pathway for CWSW and addresses the major professional frustrations while seeking to plan safe care for a child suspected of having FASD.
Social implications
The research offers a pragmatic low-cost to society to alleviate the mounting social and monetary implications of FASD. A large percentage of children impacted by prenatal alcohol exposure do not qualify under formal clinical diagnostic guidelines. Leaving these children without intervention is problematic. The recommendation of this study addresses this critical gap in services. The primary aim is to alleviate the burden on this cohort of vulnerable children by offering nonlabeling neurodevelopmental screening.
Originality/value
The direct implications of FASD and how it impacts CWS are well documented. However, few studies focus on the critical interface of FASD and the role of CWSW responsible for planning their safe care. This paper offers a novel pragmatic and functional multistep protocol to aid CWSW in this complex area of practice.
Background and Objective
Care providers in the child welfare system often support children with Fetal Alcohol Spectrum Disorder (FASD). Women who give birth to children with FASD face many multi-dimensional socio-structural challenges, including prenatal substance use, that lead to their children being placed in care. Alcohol use disorders have strong associations to trauma histories, psychiatric problems, adverse experiences in life, and other substance use. Children with FASD experience abuse and neglect along with other forms of adversities in childhood and adolescence at higher rates than other children, and are often kept in the care of the child welfare system. Risks of harm for children and youth with FASD exist due to distinct vulnerabilities associated with the disability. Even with child welfare intervention, adverse outcomes remain for children and youth with FASD. Our objective was to examine reports generated from Child Advocate offices in Canada on deaths and serious injuries where FASD was identified to gain a deeper understanding of the experiences of this population in the child welfare system. Material and methodsWe employed an intersectionality-based policy analysis (IBPA) framework to analyze child welfare reports from 1989 to 2019 available online publicly from Child Advocate (or equivalent jurisdiction) Offices across Canada. An underpinning theoretical framework in this research was life course theory, as it is critical to rec-ognize the connection that exists between early decisions made for infants and children with FASD and later outcomes in life. Reports were included when there was evidence of FASD or prenatal substance exposure in the report. Sequential Excel spreadsheets were employed for data extraction, and individual word documents were generated for each report specific to the IBPA framework. Thematic analysis was employed to identify themes related to serious injuries or deaths in child and youth, report summaries, and recommendations. ResultsA total of 61 reports were reviewed, and deaths of 17 children or adolescents with FASD were reported. Four categories of reports existed, including investigative death reports, investigative serious injury reports, special reports, and annual reports. Key themes from these reports for this population included: (1) challenges to stability and permanency, (2) challenges to FASD-informed service provision, (3) over-representation of Indigenous children and youth, and (4) presence of concurrent mental health challenges. Recommendations within reports addressed needs of individuals, families, care providers, systems, and policies. There were many consistencies across time and jurisdictions. One notable concern was that FASD, while possible, was often not diagnosed, and therefore supports and services specific to this disability were not provided. It is critical to note that these reports served to document both a child’s history and make key policy and practice recommendations to inform a differential response in the child welfare system in the case of FASD. Conclusion
This analysis illuminated the risks and vulnerabilities for this population in the child welfare system and has implications for assessment, diagnosis, and practice interventions in responding to the needs of this population. This analysis also identified that many opportunities exist to improve practice and service delivery for individuals with FASD and their families. It is critical to recognize that a connection exists between early decisions made for infants and children with FASD and later outcomes in life.
Abstract
Background and Objective
Care providers in the child welfare system often support children with Fetal Alcohol Spectrum Disorder (FASD). Women who give birth to children with FASD face many multi-dimensional socio-structural challenges, including prenatal substance use, that lead to their children being placed in care. Alcohol use disorders have strong associations to trauma histories, psychiatric problems, adverse experiences in life, and other substance use. Children with FASD experience abuse and neglect along with other forms of adversities in childhood and adolescence at higher rates than other children, and are often kept in the care of the child welfare system. Risks of harm for children and youth with FASD exist due to distinct vulnerabilities associated with the disability. Even with child welfare intervention, adverse outcomes remain for children and youth with FASD. Our objective was to examine reports generated from Child Advocate offices in Canada on deaths and serious injuries where FASD was identified to gain a deeper understanding of the experiences of this population in the child welfare system.
Material and methods
We employed an intersectionality-based policy analysis (IBPA) framework to analyze child welfare reports from 1989 to 2019 available online publicly from Child Advocate (or equivalent jurisdiction) Offices across Canada. An underpinning theoretical framework in this research was life course theory, as it is critical to rec-ognize the connection that exists between early decisions made for infants and children with FASD and later outcomes in life. Reports were included when there was evidence of FASD or prenatal substance exposure in the report. Sequential Excel spreadsheets were employed for data extraction, and individual word documents were generated for each report specific to the IBPA framework. Thematic analysis was employed to identify themes related to serious injuries or deaths in child and youth, report summaries, and recommendations.
Results
A total of 61 reports were reviewed, and deaths of 17 children or adolescents with FASD were reported. Four categories of reports existed, including investigative death reports, investigative serious injury reports, special reports, and annual reports. Key themes from these reports for this population included: (1) challenges to stability and permanency, (2) challenges to FASD-informed service provision, (3) over-representation of Indigenous children and youth, and (4) presence of concurrent mental health challenges. Recommendations within reports addressed needs of individuals, families, care providers, systems, and policies. There were many consistencies across time and jurisdictions. One notable concern was that FASD, while possible, was often not diagnosed, and therefore supports and services specific to this disability were not provided. It is critical to note that these reports served to document both a child’s history and make key policy and practice recommendations to inform a differential response in the child welfare system in the case of FASD.
Conclusion
This analysis illuminated the risks and vulnerabilities for this population in the child welfare system and has implications for assessment, diagnosis, and practice interventions in responding to the needs of this population. This analysis also identified that many opportunities exist to improve practice and service delivery for individuals with FASD and their families. It is critical to recognize that a connection exists between early decisions made for infants and children with FASD and later outcomes in life.
In 2008, the Truth and Reconciliation Commission of Canada engaged in a public project of national reconciliation to address the ongoing impacts of settler colonialism including the disproportionate number of Indigenous adults and youth who are held in remand facilities awaiting trial or sentence as well as those who are convicted and sentenced to periods of incarceration. Efforts to further reconciliation by reducing Indigenous incarceration rates have relied largely on the courts and their application of a sentencing principle rooted in the Supreme Court’s ruling in R. v. Gladue [1999] 1 SCR 688. In this article, we argue that the Gladue sentencing principle is being fundamentally undermined in the courts through risk models that actively displace the very context that Gladue reports seek to illuminate. Included in the analysis are the compounding impacts facing Indigenous individuals struggling with a complex disability like Fetal Alcohol Spectrum Disorder.
Background
People with fetal alcohol spectrum disorder (FASD) and women who drink alcohol while pregnant can experience stigma, possibly exacerbated by stereotyped media portrayals.
Method
To understand experiences of FASD stakeholders and reactions to news coverage, we conducted twelve focus groups across three categories: (1) people with FASD; (2) caregivers; and (3) professionals. Themes were identified using framework analysis.
Results
We identified stereotypes about: (1) FASD (e.g., negative life trajectories); (2) alcohol and pregnancy (e.g., bad mothers); and (3) non-biological caregivers. Participants identified potential effects of FASD stereotypes (e.g., self-fulfilling prophecies) and alcohol and pregnancy stereotypes (e.g., exacerbating difficult decisions about disclosing a child’s adoptive status).
Conclusions
Our results align with research about difficult experiences of FASD stakeholders. However, while Canadian news analyses found people with FASD portrayed as criminals, our participants identified mostly non-crime stereotypes. Participants also sometimes shifted the burden of motherhood stereotypes from low-income to higher-income women.
People with fetal alcohol spectrum disorder (FASD), a complex and controversial neurodevelopmental disability caused by alcohol exposure in the womb, report experiences of stigma in different parts of their lives. The media, sometimes central to how a public understands and constructs marginalized identities, have a notable history of poorly representing people with disabilities like FASD (including in Canada), which could increase their stigmatisation. Additionally, given its cause, women who drink while pregnant can also face stigmatisation – with some public discourses evoking narratives that promote blame and shame. To gain insight into the kinds of information presented to Canadians about FASD, alcohol, and pregnancy, we conducted a media content analysis of 286 articles retrieved from ten of the top Canadian newspapers (2002-2015). In this article, we report key themes we identified, most common being ‘crime associated with FASD’. We explore connections between this coverage, common disability stereotypes (i.e., criminal behaviour and ‘the villain’), FASD stigma, and expectations of motherhood.
People with fetal alcohol spectrum disorder (FASD), a complex and controversial neurodevelopmental disability caused by alcohol exposure in the womb, report experiences of stigma in different parts of their lives. The media, sometimes central to how a public understands and constructs marginalized identities, have a notable history of poorly representing people with disabilities like FASD (including in Canada), which could increase their stigmatisation. Additionally, given its cause, women who drink while pregnant can also face stigmatisation – with some public discourses evoking narratives that promote blame and shame. To gain insight into the kinds of information presented to Canadians about FASD, alcohol, and pregnancy, we conducted a media content analysis of 286 articles retrieved from ten of the top Canadian newspapers (2002-2015). In this article, we report key themes we identified, most common being ‘crime associated with FASD’. We explore connections between this coverage, common disability stereotypes (i.e., criminal behaviour and ‘the villain’), FASD stigma, and expectations of motherhood.
We critique published incidences for fetal alcohol syndrome (FAS) and present new estimates of the incidence of FAS and the prevalence of alcohol-related neurodevelopmental disorder (ARND). We first review criteria necessary for valid estimation of FAS incidence. Estimates for three population-based studies that best meet these criteria are reported with adjustment for underascertainment of highly exposed cases. As a result, in 1975 in Seattle, the incidence of FAS can be estimated as at least 2.8/1000 live births, and for 1979–81 in Cleveland, ∼4.6/1,000. In Roubaix, France (for data covering periods from 1977–1990), the rate is between 1.3 and 4.8/1,000, depending on the severity of effects used as diagnostic criteria. Utilizing the longitudinal neurobehavioral database of the Seattle study, we propose an operationalization of the Institute of Medicine's recent definition of ARND and estimate its prevalence in Seattle for the period 1975–1981. The combined rate of FAS and ARND is thus estimated to be at least 9.1/1,000. This conservative rate—nearly one in every 100 live births—confirms the perception of many health professionals that fetal alcohol exposure is a serious problem.Teratology 56:317–326, 1997. © 1997 Wiley-Liss, Inc.
Since Fetal Alcohol Spectrum Disorder (FASD): Canadian Guidelines for Diagnosis was published as a supplement to the Canadian Medical Association Journal in 2005, new evidence and recommendations have emerged necessitating an update and revision. A survey was sent to all diagnostic centres in Canada (between 2013-2014) to identify the strengths and weaknesses of the 2005 guidelines, and to highlight areas needing revision. The survey was developed and customized by the steering committee to ensure that the necessary information was collected to address the key questions identified for this project. Data supported the addition of sections pertaining to the approach for diagnosis in infants and young children, and adults, as well as improvements to the clarity, validity and implementation of both standardized anthropometric measures and neurodevelopmental assessment domains across the lifespan. A steering committee was tasked to review, analyze and integrate current approaches to diagnosis in an effort to achieve agreement on standard recommendations for best practices in FASD diagnoses using the AGREE II (Appraisal of Guidelines, Research and Evaluation) instrument. The purpose of this paper is to present the updated set of diagnostic guidelines for FASD with recommendations on their application for individuals at risk for alcohol-related effects across the lifespan. The evidence-based guidelines and recommendations are based on widespread consultation with expert practitioners as well as research and community partners in the field and were developed using the Grading or Recommendations, Assessment, Development and Evaluation (GRADE) system to describe both the strength of recommendations and quality of evidence. There was unanimous agreement that the diagnostic process should continue to involve a comprehensive, multidisciplinary approach that includes a history, physical examination, and neurodevelopmental assessment.
Objective To investigate whether language used in science abstracts can skew towards the use of strikingly positive and negative words over time.
Design Retrospective analysis of all scientific abstracts in PubMed between 1974 and 2014.
Methods The yearly frequencies of positive, negative, and neutral words (25 preselected words in each category), plus 100 randomly selected words were normalised for the total number of abstracts. Subanalyses included pattern quantification of individual words, specificity for selected high impact journals, and comparison between author affiliations within or outside countries with English as the official majority language. Frequency patterns were compared with 4% of all books ever printed and digitised by use of Google Books Ngram Viewer.
Main outcome measures Frequencies of positive and negative words in abstracts compared with frequencies of words with a neutral and random connotation, expressed as relative change since 1980.
Results The absolute frequency of positive words increased from 2.0% (1974-80) to 17.5% (2014), a relative increase of 880% over four decades. All 25 individual positive words contributed to the increase, particularly the words “robust,” “novel,” “innovative,” and “unprecedented,” which increased in relative frequency up to 15 000%. Comparable but less pronounced results were obtained when restricting the analysis to selected journals with high impact factors. Authors affiliated to an institute in a non-English speaking country used significantly more positive words. Negative word frequencies increased from 1.3% (1974-80) to 3.2% (2014), a relative increase of 257%. Over the same time period, no apparent increase was found in neutral or random word use, or in the frequency of positive word use in published books.
Conclusions Our lexicographic analysis indicates that scientific abstracts are currently written with more positive and negative words, and provides an insight into the evolution of scientific writing. Apparently scientists look on the bright side of research results. But whether this perception fits reality should be questioned.
Stigma can influence the prevention and identification of fetal alcohol spectrum disorder (FASD), a leading cause of developmental
delay in North America. Understanding the effects of public health practices and policies on stigma is imperative. We reviewed
social science and biomedical literatures to understand the nature of stigma in FASD and its relevance from an ethics standpoint
in matters of health practices and policies (e.g., diagnostic practices, awareness campaigns). We propose (i) a descriptive
model of stigma in FASD and note current knowledge gaps; (ii) discuss the ethical implications of stigma based on two distinct
criteria (dignity and consequences); and (iii) describe two cases and the concerns associated with inadvertent stigmatization
by public health initiatives for FASD. We recommend further empirical and ethical analyses to examine whether public health
policies and practices inadvertently stigmatize and impact the success of public health initiatives and programs for FASD.
International media have reported cases of pregnant women who have had their children apprehended by social services, or who were incarcerated or forced into treatment programs based on a history of substance use or lack of adherence to addiction treatment programs. Public discourse on the biology of addiction has been criticized for generating stigma and a diminished perception of self-control in individuals with an addiction, potentially contributing to coercive approaches and criminalization of women who misuse substances during pregnancy. We explored whether this is the case based on literature from social psychology, ethics, addiction research, science communication, and philosophy. The literature shows that the relationship between public discourse on biological aspects of addiction and issues such as stigma and perceptions of diminished self-control are unclear, largely due to the complexity of these phenomena. However, concerns about the biological approach are nevertheless legitimate given the broader social and policy context of women’s health.
To identify the source (press releases or news) of distortions, exaggerations, or changes to the main conclusions drawn from research that could potentially influence a reader's health related behaviour.
Retrospective quantitative content analysis.
Journal articles, press releases, and related news, with accompanying simulations.
Press releases (n=462) on biomedical and health related science issued by 20 leading UK universities in 2011, alongside their associated peer reviewed research papers and news stories (n=668).
Advice to readers to change behaviour, causal statements drawn from correlational research, and inference to humans from animal research that went beyond those in the associated peer reviewed papers.
40% (95% confidence interval 33% to 46%) of the press releases contained exaggerated advice, 33% (26% to 40%) contained exaggerated causal claims, and 36% (28% to 46%) contained exaggerated inference to humans from animal research. When press releases contained such exaggeration, 58% (95% confidence interval 48% to 68%), 81% (70% to 93%), and 86% (77% to 95%) of news stories, respectively, contained similar exaggeration, compared with exaggeration rates of 17% (10% to 24%), 18% (9% to 27%), and 10% (0% to 19%) in news when the press releases were not exaggerated. Odds ratios for each category of analysis were 6.5 (95% confidence interval 3.5 to 12), 20 (7.6 to 51), and 56 (15 to 211). At the same time, there was little evidence that exaggeration in press releases increased the uptake of news.
Exaggeration in news is strongly associated with exaggeration in press releases. Improving the accuracy of academic press releases could represent a key opportunity for reducing misleading health related news.
© Sumner et al 2014.
The 'power' of media Mass media are believed to cause violence, sexual promiscuity and contribute to discrimination against women. Media advertising is used to sell products and services. News in leading media has been shown to significantly affect stock prices; lead to corporate collapses; cause falls in sales of products; result in the resignation of senior office-holders – even bring down Presidents. Further information on the effects of mass media is provided in Macnamara (2003), Mass Media Effects: A Review of 50 Years of Media Effects Research. Sociologists have been interested in mass media content since the early 20 th century, starting with Max Weber who saw media content as a means of monitoring the 'cultural temperature' of society (Hansen, Cottle, Negrine & Newbold, 1998, p. 92). Media content analysis – an overview Media content analysis is a specialized sub-set of content analysis, a well-established research methodology. Neuendorf (2002) describes content analysis as "the primary message-centred methodology" (p. 9) and cites studies such as Riffe and Freitag (1997) and Yale and Gilly (1988) which "reported that in the field of mass communication research, content analysis has been the fastest-growing technique over the past 20 years or so" (Neuendorf, 2002, p.1). Riffe and Freitag (1997) found that the number of content analyses published in Journalism & Mass Communication Quarterly increased from 6.3% of all articles in 1971 to 34.8% in 1995 – nearly a six-fold increase. Fowler (as cited in Neuendorf (2002) reported that by the mid-1980s over 84% of masters level research methods courses in journalism in the US included content analysis (p. 27) Content analysis is used to study a broad range of 'texts' from transcripts of interviews and discussions in clinical and social research to the narrative and form of films, TV programs and the editorial and advertising content of newspapers and magazines.
This article describes U.S. state policies related to alcohol use during pregnancy, using data from the National Institute on Alcohol Abuse and Alcoholism (NIAAA) Alcohol Policy Information System (APIS). Specifically, this study examines trends in policies enacted by states over time and types of policies enacted across states in the U.S., with a focus on whether laws were supportive or punitive toward women. Findings revealed substantial variability in characteristics of policies (19 primarily supportive, 12 primarily punitive, 12 with a mixed approach, and 8 with no policies). Findings underscore the need to examine possible consequences of policies, especially of punitive policies and "mixed" approaches.
Today, alongside many other proscriptions, women are expected to abstain or at least limit their alcohol consumption during pregnancy. This advice is reinforced through warning labels on bottles and cans of alcoholic drinks. In most (but not all) official policies, this is linked to a risk of Foetal Alcohol Syndrome (FAS) or one of its associated conditions. However, given that there is little medical evidence that low levels of alcohol consumption have an adverse impact on the foetus, we need to examine broader societal ideas to explain why this has now become a policy concern. This paper presents a quantitative and qualitative assessment of analysis of the media in this context. By analysing the frames over time, this paper will trace the emergence of concerns about alcohol consumption during pregnancy. It will argue that contemporary concerns about FAS are framed around a number of pre-existing discourses including alcohol consumption as a social problem, heightened concerns about children at risk and shifts in ideas about the responsibility of motherhood including during the pre-conception and pregnancy periods. Whilst the newspapers regularly carried critiques of the abstinence position now advocated, these challenges focused did little to refute current parenting cultures.
Background:
Many children with heavy exposure to alcohol in utero display characteristic alterations in brain size and structure. However, the long-term effects of low-to-moderate alcohol exposure on these outcomes are unknown.
Methods:
Using voxel-based morphometry and region-of-interest analyses, we examined the influence of lower doses of alcohol on gray and white matter composition in a prospectively recruited, homogeneous, well-characterized cohort of alcohol-exposed (n = 11, age 19.5 ± 0.3 years) and control (n = 9, age 19.6 ± 0.5 years) young adults. A large proportion of the exposed individuals were born to mothers whose alcohol consumption during pregnancy was in the low-to-moderate range.
Results:
There were no differences in total brain volume or total gray or white matter volume between the exposed and control groups. However, gray matter volume was reduced in alcohol-exposed individuals in several areas previously reported to be affected by high levels of exposure, including the left cingulate gyrus, bilateral middle frontal gyri, right middle temporal gyrus, and right caudate nucleus. Notably, this gray matter loss was dose dependent, with higher exposure producing more substantial losses.
Conclusions:
These results indicate that even at low doses, alcohol exposure during pregnancy impacts brain development and that these effects persist into young adulthood.
This study examines the relationship between light drinking during pregnancy and the risk of socioemotional problems and cognitive deficits at age 5 years.
Data from the nationally representative prospective UK Millennium Cohort Study (N=11,513) were used. Participants were grouped according to mothers' reported alcohol consumption during pregnancy: never drinker; not in pregnancy; light; moderate; heavy/binge. At age 5 years the strengths and difficulties questionnaire (SDQ) and British ability scales (BAS) tests were administered during home interviews. Defined clinically relevant cut-offs on the SDQ and standardised scores for the BAS subscales were used.
Boys and girls born to light drinkers were less likely to have high total difficulties (for boys 6.6% vs 9.6%, OR=0.67, for girls 4.3% vs 6.2%, OR=0.69) and hyperactivity (for boys 10.1% vs 13.4%, OR=0.73, for girls 5.5% vs 7.6%, OR=0.71) scores compared with those born to mothers in the not-in-pregnancy group. These differences were attenuated on adjustment for confounding and mediating factors. Boys and girls born to light drinkers had higher mean cognitive test scores compared with those born to mothers in the not-in-pregnancy group: for boys, naming vocabulary (58 vs 55), picture similarities (56 vs 55) and pattern construction (52 vs 50), for girls naming vocabulary (58 vs 56) and pattern construction (53 vs 52). Differences remained statistically significant for boys in naming vocabulary and picture similarities.
At age 5 years cohort members born to mothers who drank up to 1-2 drinks per week or per occasion during pregnancy were not at increased risk of clinically relevant behavioural difficulties or cognitive deficits compared with children of mothers in the not-in-pregnancy group.
There is substantial evidence that methylphenidate (MPH; Ritalin), is being used by healthy university students for non-medical motives such as the improvement of concentration, alertness, and academic performance. The scope and potential consequences of the non-medical use of MPH upon healthcare and society bring about many points of view.
To gain insight into key ethical and social issues on the non-medical use of MPH, we examined discourses in the print media, bioethics literature, and public health literature.
Our study identified three diverging paradigms with varying perspectives on the nature of performance enhancement. The beneficial effects of MPH on normal cognition were generally portrayed enthusiastically in the print media and bioethics discourses but supported by scant information on associated risks. Overall, we found a variety of perspectives regarding ethical, legal and social issues related to the non-medical use of MPH for performance enhancement and its impact upon social practices and institutions. The exception to this was public health discourse which took a strong stance against the non-medical use of MPH typically viewed as a form of prescription abuse or misuse. Wide-ranging recommendations for prevention of further non-medical use of MPH included legislation and increased public education.
Some positive portrayals of the non-medical use of MPH for performance enhancement in the print media and bioethics discourses could entice further uses. Medicine and society need to prepare for more prevalent non-medical uses of neuropharmaceuticals by fostering better informed public debates.
This study explores the social and professional discourses that influence nurses knowledge and assumptions about First Nations patients. Through the use of an ethnographic design, in-depth interviewing, and participant observation, data were collected over a 9-month period of immersion in a midsized hospital located in western Canada. Purposive sampling was used to recruit 35 participants: nurses, First Nations women who were patients in the hospital, and key informants with expertise in Aboriginal health. The findings indicate that 3 overlapping discourses were shaping nurses' perspectives concerning the First Nations women they encountered: discourses about culture, professional discourses of egalitarianism, and popularized discourses about Aboriginal peoples. Cultural assumptions were intertwined with dominant social stereotypes and were sometimes expressed as fact even when they conflicted with egalitarian ideals. Conclusions highlight the need for strategies to help nurses think more critically about their understandings of culture, the sociopolitical context of health-care encounters, and the wider social discourses that influence the perspectives of nurses.
Since its discovery almost 30 years ago, the fetal alcohol syndrome (FAS) has been characterized in the USA, as a major threat to public health. In part because FAS resonated with broader social concerns in the 1970s and 1980s about alcohol's deleterious effect on American society and about a perceived increase in child abuse and neglect, it quickly achieved prominence as a social problem. In this paper, we demonstrate that, as concern about this social problem escalated beyond the level warranted by the existing evidence, FAS took on the status of a moral panic. Through examples taken from both the biomedical literature and the media about drinking during pregnancy, we illustrate the evolution of this development, and we describe its implications, particularly how it has contributed to a vapid public policy response.
To determine if research has adequately examined the health needs of the aboriginal population of Canada.
Review.
Medline search of journal articles published during 1992-2001. The search terms used were "Canada" and various synonyms and categories for Canadian aboriginal people. Each paper was categorised according to the aboriginal group, age-sex group, comparison group, geographic location, and type of research topic (health determinant, health status, or health care).
Of 352 citations found, 254 were selected after elimination of those without abstracts, not containing data on Canada, or not focusing on health issues. The proportion of papers does not reflect the demographic composition of aboriginal people in Canada, with severe under-representation of Métis, urban aboriginal people, and First Nations people not living on reserves and over-representation of the Inuit. Children and women received less attention proportional to their share of the population. A few prolific research groups have generated a disproportionate amount of publications from a few communities and regions. 174 papers dealt with health determinants (for example, genetics, diet, and contaminants), 173 with health status, and 75 with health care. Injuries, which account for a third of all deaths, were studied in only 8 papers. None of the health care papers examined rehabilitation.
Researchers have not adequately examined several important health needs of the aboriginal population.
The diagnosis of fetal alcohol spectrum disorder (FASD) is complex and guidelines are warranted. A subcommittee of the Public Health Agency of Canada's National Advisory Committee on Fetal Alcohol Spectrum Disorder reviewed, analysed and integrated current approaches to diagnosis to reach agreement on a standard in Canada. The purpose of this paper is to review and clarify the use of current diagnostic systems and make recommendations on their application for diagnosis of FASD-related disabilities in people of all ages. The guidelines are based on widespread consultation of expert practitioners and partners in the field. The guidelines have been organized into 7 categories: screening and referral; the physical examination and differential diagnosis; the neurobehavioural assessment; and treatment and follow-up; maternal alcohol history in pregnancy; diagnostic criteria for fetal alcohol syndrome (FAS), partial FAS and alcohol-related neurodevelopmental disorder; and harmonization of Institute of Medicine and 4-Digit Diagnostic Code approaches. The diagnosis requires a comprehensive history and physical and neurobehavioural assessments; a multidisciplinary approach is necessary. These are the first Canadian guidelines for the diagnosis of FAS and its related disabilities, developed by broad-based consultation among experts in diagnosis.
Health disparities are, first and foremost, those indicators of a relative disproportionate burden of disease on a particular population. Health inequities point to the underlying causes of the disparities, many if not most of which sit largely outside of the typically constituted domain of "health". The literature reviewed for this synthesis document indicates that time and again health disparities are directly and indirectly associated with social, economic, cultural and political inequities; the end result of which is a disproportionate burden of ill health and social suffering upon the Aboriginal populations of Canada. In analyses of health disparities, it is as important to navigate the interstices between the person and the wider social and historical contexts as it is to pay attention to the individual effects of inequity. Research and policy must address the contemporary realities of Aboriginal health and well-being, including the individual and community-based effects of health disparities and the direct and indirect sources of those disparities.
Advances in neuroscience are increasingly intersecting with issues of ethical, legal, and social interest. This study is an analysis of press coverage of an advanced technology for brain imaging, functional magnetic resonance imaging, that has gained significant public visibility over the past ten years. Discussion of issues of scientific validity and interpretation dominated over ethical content in both the popular and specialized press. Coverage of research on higher order cognitive phenomena specifically attributed broad personal and societal meaning to neuroimages. The authors conclude that neuroscience provides an ideal model for exploring science communication and ethics in a multicultural context.
The issue of women’s consumption of alcohol during pregnancy has gained increasing public attention in Australia in recent years. This article examines the framing of the issue in news media and pregnancy and parenting websites during 2013–2014, with particular attention to the two most prominent frames of ‘contested evidence and advice’ and ‘women’s rights’. Public health guidelines in Australia, as elsewhere, advise women that not drinking during pregnancy is the safest option, but debate continues to surround the evidence to support this advice and its impact. This article considers these guidelines in the context of critical public health scholarship highlighting the intensification of discourses of health, risk, and responsibility in relation to pregnancy and maternal practices. Newly published scientific research provided a key source of news about the risks associated with alcohol consumption during pregnancy, with stories reporting on studies that variously identified evidence of harm, or no harm, to the fetus. In the context of the ‘women’s rights’ frame, consuming alcohol during pregnancy was not constructed primarily as a matter of scientific research or expert opinion but as one of many social practices women negotiate during pregnancy. It foregrounded the rights of women to make their own decisions about alcohol consumption. The deployment of these two frames in mediated public discussion of the issue reflects the inconclusiveness of evidence about the risks of low to moderate consumption and shows women critically engaging with public health advice in the context of the numerous directives they are inundated with during pregnancy.
p>Fetal alcohol spectrum disorder (FASD) is a leading form of neurodevelopmental delay in Canada, affecting an estimated 3000 babies per year. FASD involves a range of disabilities that entail significant costs to affected individuals, families, and society. Exposure to alcohol in utero is a necessary factor for FASD development, and this has led to FASD being described as “completely preventable”. However, there are significant ethical challenges associated with FASD prevention. These challenges revolve around 1) what should be communicated about the risks of alcohol consumption during pregnancy, given some ongoing scientific uncertainty about the effects of prenatal alcohol exposure, and 2) how to communicate these risks, given the potential for stigma against women who give birth to children with FASD as well as against children and adults with FASD. In this paper, we share initial thoughts on how primary care physicians can tackle this complex challenge. First, we recommend honest disclosure of scientific evidence to women and the tailoring of information offered to pregnant women. Second, we propose a contextualized, patient-centred, compassionate approach to ensure that appropriate advice is given to patients in a supportive, non-stigmatizing way.</p
Everyone agrees that current advice on alcohol is inconsistent and confusing, but whereas Mary Mather and Kate Wiles conclude we should move to a clear recommendation to abstain, Patrick O’Brien thinks it is wrong to assume pregnant women cannot understand the evidence
No advisory body in England and Wales gives a clear recommendation to abstain from alcohol in pregnancy. The Department of Health recommends that pregnant women should avoid alcohol but undermines the advice by giving an apparently “safe” level for alcohol in pregnancy: that if a woman “chooses to drink” she should drink no more four units a week.1 The National Institute for Health and Care Excellence (NICE) emphasises avoiding drinking alcohol in the first three months of pregnancy because of an association with miscarriage.2 The Royal College of Obstetricians and Gynaecologists states that small amounts of alcohol have not been shown to be harmful.3
### International consensus
Current guidance flies in the face of evidence and international consensus. The US surgeon general first advised women not to drink in pregnancy in 1981. Current US guidance states “that there is no known safe amount of alcohol to drink while pregnant, no safe time to drink and no safe kind of alcohol.”4 Pregnant women in Canada, Denmark, France, Norway, Israel, Mexico, Australia, Ireland, New Zealand, Spain, the Netherlands, and Scotland are advised to abstain from alcohol.5
Nearly 4000 papers have now been published confirming the teratogenicity of alcohol. There is no evidence that alcohol is beneficial to embryonic and fetal development. Teratogenicity has been conclusively shown in clinical, behavioural, and epidemiological studies, and undisputed teratogenic effects include fetal alcohol syndrome, mental retardation, a spectrum of developmental and behavioural abnormalities, and low birth weight.6
Worldwide estimates are that at least 1% of live births are affected by prenatal …
Social science research on stigma has grown dramatically over the past two decades, particularly in social psychology, where researchers have elucidated the ways in which people construct cognitive categories and link those categories to stereotyped beliefs. In the midst of this growth, the stigma concept has been criticized as being too vaguely defined and individually focused. In response to these criticisms, we define stigma as the co-occurrence of its components-labeling, stereotyping, separation, status loss, and discrimination-and further indicate that for stigmatization to occur, power must be exercised. The stigma concept we construct has implications for understanding several core issues in stigma research, ranging from the definition of the concept to the reasons stigma sometimes represents a very persistent predicament in the lives of persons affected by it. Finally, because there are so many stigmatized circumstances and because stigmatizing processes can affect multiple domains of people's lives, stigmatization probably has a dramatic bearing on the distribution of life chances in such areas as earnings, housing, criminal involvement, health, and life itself. It follows that social scientists who are interested in understanding the distribution of such life chances should also be interested in stigma.
To map the landscape of research on autism (ASD), cerebral palsy (CP), and fetal alcohol spectrum disorder (FASD) in Canadian Aboriginal children.
The authors used a detailed search strategy to identify and access publications on ASD, CP, and FASD involving Canadian Aboriginal children, families, and communities from online databases. They analyzed these materials for the type of research, stated objectives, methodologies, and the level of engagement of Aboriginal Peoples.
The authors found a total of 52 reports published since 1981 relevant to Aboriginal children. Of these, 51 focused exclusively on FASD. They also found a near-complete failure to acknowledge community involvement in research decisions or dissemination of results in any of the publications.
The focus on FASD in Aboriginal children and the absence of research on the other 2 major childhood disorders are at odds with rates of these disorders across Canadian children. The authors argue that this trend violates fundamental principles ensuring equitable representation of all children regardless of background in research and access to benefits of research in health care and perpetuates stigma in an already marginalized population.
This article reports the results of a qualitative framing analysis of the coverage of fetal alcohol spectrum disorders (FASD). The findings indicate that media discourse about FASD is characterized by differing story types and competing frames. The study also documents the recent emergence of a new frame in opposition to the prevailing abstinence frame in health coverage. This frame has shown physicians to be conflicted in their advice about drinking during pregnancy.
The experiences and perspectives of New Zealanders with fetal alcohol spectrum disorder (FASD) need to be heard since no research to date has been performed. FASD, a neuro-developmental disability with life-lasting effects, is irreversible. The condition is caused by prenatal exposure to alcohol.
This study aimed to explore and understand the daily challenges of New Zealand individuals with FASD.
Our sequential mixed methods design used two discrete but compatible qualitative methodologies--transcendental phenomenology in Phase One and classic grounded theory in Phase Two--framed by the meta-theory of pragmatism, which allows the use of 'what works' in research. One methodology alone would not have answered our research question. Using the same sample of 14 individuals, 14 to 37 years, two separate data sets were produced sequentially using face-to-face unstructured interviews. Participants had been diagnosed with either fetal alcohol syndrome (FAS) or fetal alcohol effects (FAE). Data credibility was checked using triangulation.
Six themes common to the participants' experiences emerged: daily challenges in the classroom; daily challenges in the workplace; coping with mental health issues; memory problems; socialization difficulties and involvement with the law and authority. Phase Two's emerging theory revealed that because the participants perceived they had been under-supported by the social/health systems, many engaged in illegal behaviours (secondary disabilities) and experienced employment and social problems. Many disavowed having the disability, but with maturity and knowing the signs and symptoms, accepted it. They suggested ways in which their concerns could be resolved.
In order that progress in this field can take place, health and social agencies, educational and criminal justice systems and policy-makers need to have increased awareness of the disability and the complex problems that individuals with the disability and their families face.
In Canada the incidences of Fetal Alcohol Spectrum Disorder (FASD) is estimated to be in 1 in 100 live births caused by prenatal exposure to alcohol, the disorder is the leading cause of developmental and cognitive disabilities among Canadian children and its effects are life lasting. No research has attempted to describe the experience of living with FASD from the perspective of Canadian children.
The main purpose of this study was to describe the children's experience of living with FASD.
A qualitative method was used to examine the children's experiences. Twenty-two (22) children, aged 6 to 18 years, living in urban and rural communities across Canada participated in an unstructured in-depth interview. Data was analysed using Colaizzi's qualitative method.
For all children in this study, living day-to-day with FASD meant feeling different. Within this construct knowing the disability; feeling alone-feeling supported, and overcoming the disability were dominant themes which emerged.
Implications for practice and research have been described.Keywords: Fetal Alcohol Spectrum Disorder, children's experience, qualitative research.
the Australian National Health and Medical Research Council (NHMRC) recently revised its guidelines for alcohol consumption during pregnancy and breast feeding, moving from a recommendation of minimising intake to one of abstinence. Women are potentially exposed to a variety of messages about alcohol and pregnancy, including from the media and social contacts, and are likely to see midwives as the source of expert advice in understanding these contradictory messages.
to explore the advice that midwives believe they give to pregnant women about alcohol consumption, and the advice that pregnant women believe they receive; the knowledge and attitudes of both groups regarding alcohol consumption and the consistency with the NHMRC guidelines; and the receptivity and comfort of both groups in discussing alcohol consumption in the context of antenatal appointments.
individual semi-structured interviews with midwives and pregnant women.
face-to-face interviews with midwives and telephone interviews with pregnant women were conducted in two regional areas of New South Wales in 2008-2009.
12 midwives and 12 pregnant women.
midwives and pregnant women consistently agreed that conversations about alcohol are generally limited to brief screening questions at the first visit, and the risks are not discussed or explained (except for high-risk women).
both groups expressed comfort with the idea of discussing alcohol consumption, but lacked knowledge of the risk and recommendation, and it appears that this opportunity to provide women with information is under-utilised.
there is a need to provide midwives with accurate information about the risks of alcohol consumption during pregnancy and effective communication tools to encourage them to discuss the risks and recommendations with their patients.
Researching the epidemiology and estimating the prevalence of fetal alcohol syndrome (FAS) and other fetal alcohol spectrum disorders (FASD) for mainstream populations anywhere in the world has presented a challenge to researchers. Three major approaches have been used in the past: surveillance and record review systems, clinic-based studies, and active case ascertainment methods. The literature on each of these methods is reviewed citing the strengths, weaknesses, prevalence results, and other practical considerations for each method. Previous conclusions about the prevalence of FAS and total FASD in the United States (US) population are summarized. Active approaches which provide clinical outreach, recruitment, and diagnostic services in specific populations have been demonstrated to produce the highest prevalence estimates. We then describe and review studies utilizing in-school screening and diagnosis, a special type of active case ascertainment. Selected results from a number of in-school studies in South Africa, Italy, and the US are highlighted. The particular focus of the review is on the nature of the data produced from in-school methods and the specific prevalence rates of FAS and total FASD which have emanated from them. We conclude that FAS and other FASD are more prevalent in school populations, and therefore the general population, than previously estimated. We believe that the prevalence of FAS in typical, mixed-racial, and mixed-socioeconomic populations of the US is at least 2 to 7 per 1,000. Regarding all levels of FASD, we estimate that the current prevalence of FASD in populations of younger school children may be as high as 2-5% in the US and some Western European countries.
The publication of the latest contribution to the alcohol-in-pregnancy debate, and the now customary flurry of media attention it generated, have precipitated the renewal of a series of ongoing debates about safe levels of consumption and responsible prenatal conduct. The University College London (UCL) study's finding that low levels of alcohol did not contribute to adverse behavioural outcomes-and may indeed have made a positive contribution in some cases-is unlikely to be the last word on the subject. Proving a negative correlation is notoriously difficult (technically, impossible), and other studies have offered alternative claims. The author is not an epidemiologist, and the purpose of this article is not to evaluate the competing empirical claims. However, the question of what information and advice healthcare practitioners ought to present to pregnant women, or prospectively or potentially pregnant women, in a situation of uncertainty is one to which healthcare ethicists may have a contribution to make. In this article, it is argued that the total abstinence policy advocated by the UK's Department of Health, and even more stridently by the British Medical Association, sits uneasily with recent data and is far from ethically unproblematic. In particular, the "precautionary" approach advocated by these bodies displays both scant regard for the autonomy of pregnant and prospectively pregnant women and a confused grasp of the principles of beneficence and non-maleficence.
The diagnosis of fetal alcohol syndrome (FAS) was invented in 1973. This paper investigates the process by which a cluster of birth defects associated with exposure to alcohol in utero came to be a distinct medical diagnosis, focusing on the first ten years of the medical literature on FAS. Fetal alcohol syndrome was "discovered" by a group of American dysmorphologists who published the first case reports and coined the term FAS. However, the nature of the diagnosis and its salient symptoms were determined collectively over time by the medical profession as a whole. The paper traces the natural history of the diagnosis in the U.S. through five stages: introduction, confirmation and corroboration, dissent, expansion, and diffusion. FAS serves as an example of the social construction of clinical diagnosis; moral entrepreneurship plays a key role and the medical literature on FAS is infused with moral rhetoric, including passages from classical mythology, philosophy, and the Bible. FAS is a moral as well as a medical diagnosis, reflecting the broader cultural concerns of the era in which it was discovered, including a greater awareness of environmental threats to health, the development of fetal medicine, an emphasis on "the perfect child," and a growing paradigm of maternal-fetal conflict.
The purpose of this study was to examine a broader array of lifetime factors that theoretically may be associated with prenatal alcohol use than have previously been studied together, including family history of alcohol-use problems, history of physical or sexual abuse, lifetime major depressive disorder, alcohol-use disorder, illicit-drug-use problems, and partner violence.
A total of 186 pregnant women, all of whom used alcohol in the year before pregnancy, were initially recruited in prenatal care settings. Women who reported no prenatal alcohol use (n = 96) were compared with women who drank 1-10 standard drinks during pregnancy (n = 75) and with women who drank more than 10 standard drinks during pregnancy (n = 13), considered to be a higher risk group, on the lifetime risk variables. Because of the public health implications, secondary analyses compared women who abstained during pregnancy with those who used any alcohol.
Significant intercorrelations were found among most of the lifetime risk factors studied. Multivariate analyses showed that drug-use problems and partner violence were most strongly associated with prenatal alcohol use than any other variable studied.
Consistent with a life span risk framework for alcohol-use problems, results of this study show that childhood abuse, familial alcoholism, lifetime major depressive disorder, and alcohol- and drug-use problems are interrelated. However, when considered together, only lifetime partner violence and drug use are significantly related to various levels of prenatal alcohol use. Identification, assessment, and intervention efforts should integrate these important factors.
Public Health Agency of Canada
Public Health Agency of Canada. Evaluation of the Fetal Alcohol Spectrum Disorder (FASD) Initiative 2008-2009 to
2012-2013. Ottawa, ON: Health Canada, 2014.
Fetal alcohol spectrum disorders: Management and policy perspectives of FASD
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Andrew G. Diagnosis of FASD: An overview. In: Riley E, Clarren S, Weinberg J, Jansson E (Eds.), Fetal alcohol
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Alcohol use during pregnancy and awareness of fetal alcohol syndrome: Results of a national survey. Ottawa: Health Canada
- Environics Research Group
Environics Research Group. Alcohol use during pregnancy and awareness of fetal alcohol syndrome: Results of a
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Alcohol use during pregnancy and awareness of fetal alcohol syndrome: Results of a national survey
- Environics Research Group
Environics Research Group. Alcohol use during pregnancy and awareness of fetal alcohol syndrome: Results of a
national survey. Ottawa: Health Canada, 2000.
What Do the Media Do to Us?
- M O'shaughnessy
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Oxford University Press, 2008.
Conversations about alcohol and pregnancy
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Holland K, McCallum K, Blood RW. Conversations about alcohol and pregnancy. Canberra, ACT: Foundation for
Alcohol Research and Education, 2015.
Daily Newspaper Circulation Report
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Systematic review of the prevalence of fetal alcohol spectrum disorders
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Institute of Health Economics, 2013.
Fetal alcohol syndrome among Aboriginal people in Canada: Review and analysis of the intergenerational links to residential schools
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Tait CL. Fetal alcohol syndrome among Aboriginal people in Canada: Review and analysis of the intergenerational
links to residential schools. Ottawa, ON: Aboriginal Healing Foundation, 2003.
Guidelines for pregnancy: What's an acceptable risk, and how is the evidence (finally) shaping up?
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O'Leary CM, Bower C. Guidelines for pregnancy: What's an acceptable risk, and how is the evidence (finally)
shaping up? Drug Alcohol Rev. 2012;31(2):170-83.