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Ethical challenges in FASD prevention: Scientific uncertainty, stigma, and respect for women's autonomy
Abstract
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
... Similar studies have stressed the importance of informing pregnant women that there is no safe level of alcohol use during pregnancy, whatever the timing of alcohol exposure ( Crawford-Williams et al., 2015b ;Coons et al., 2017 ). In view of the limited success of public health interventions to reduce prenatal alcohol consumption ( Deshpande et al., 2005 ;Crawford-Williams et al., 2015c ), a trusting relationship between pregnant women and their attending healthcare professionals, based on a personalised and compassionate approach, is paramount for prevention ( Zizzo and Racine, 2017 ;Hocking et al., 2020 ). ...
... The first one focuses on the content of scientific evidence to be transmitted and is primarily guided by the aim of promoting an abstinence message. The second perspective is more engaged with ethical challenges in FASD prevention ( Zizzo and Racine, 2017 ), such as allowing pregnant women to make informed decisions about their alcohol consumption and questioning the use of fear-based messages. Indeed, the efficacy of such messages in changing health behaviours is debated ( Ruiter et al., 2014 ;Esrick et al., 2019 ), as they may miss the target and make women who consume alcohol feel guilty or reject the abstinence message ( Gavaghan, 2009 ;Zizzo and Racine, 2017 ). ...
... The second perspective is more engaged with ethical challenges in FASD prevention ( Zizzo and Racine, 2017 ), such as allowing pregnant women to make informed decisions about their alcohol consumption and questioning the use of fear-based messages. Indeed, the efficacy of such messages in changing health behaviours is debated ( Ruiter et al., 2014 ;Esrick et al., 2019 ), as they may miss the target and make women who consume alcohol feel guilty or reject the abstinence message ( Gavaghan, 2009 ;Zizzo and Racine, 2017 ). Another contentious issue is the communication of uncertainty about the effects of a low to moderate level of alcohol intake ( Schölin et al., 2019 ), since the total abstinence policy has been criticised for being paternalistic and endorsing risk discourses surrounding pregnancy ( Gavaghan, 2009 ;Lowe and Lee, 2010 ). ...
Objective Official guidelines advocate abstinence from alcohol during pregnancy. However, a number of women consume alcohol while pregnant. Understanding women's reasons and the context for drinking during pregnancy outside the context of an alcohol use disorder may be helpful for interventions of healthcare providers and health policymakers. This paper reports a systematic review of qualitative studies focusing on women's perspectives of the issue of alcohol consumption during pregnancy on one hand, and on recommendations on the other.
Design. Seven electronic databases and citation lists of published papers were searched for peer‐reviewed articles published between 2002 and 2019 in English and French, reporting primary empirical research, using qualitative design and exploring women's views and experiences about the issue of alcohol and pregnancy. Studies involving participant women identified as having an alcohol use disorder while pregnant were excluded. Using the thematic synthesis method, we extracted and coded findings and recommendations from the selected studies.
Setting and participants Women who mostly reported being abstinent or having reduced their alcohol consumption during pregnancy, and non-pregnant women
Findings We included 27 studies from 11 different countries. The quality of studies was assessed using the CASP tool. We developed five analytical themes synthesising women's views and experiences of abstinence and occasional alcohol consumption during pregnancy: lack of reliable information; inadequate information from health professionals; women's perception of public health messages; women's experiences and perception of risk; and social norms and cultural context. Six analytical themes synthesising recommendations were generated: improving health professionals’ knowledge and screening practice; diversification of information sources; improving women's information; empowering women's choice; delivering appropriate messages; and addressing socio-structural factors.
Key conclusions Our review provides evidence that information on the issue of alcohol consumption during pregnancy should be improved in both qualitative and quantitative terms. However, the reasons for pregnant women's occasional drinking are complex and influenced by a range of socio-cultural factors. Therefore, healthcare professionals and policymakers should take into account women's experiences and the context of their everyday lives when conveying preventive messages. Our review demonstrates that awareness strategies should not focus solely on women's individual responsibility. They should also address a wider audience and foster a more supportive socio-structural environment.
Implications for practice The understanding of women's perspective is essential to designing sound prevention interventions and credible messages. Our review provides a comprehensive summary of the state of qualitative research on women's experience of the risk of alcohol use during pregnancy, as well as the literature's recommendations about how to address this issue. This review also contributes to identifying overlooked areas of recommendations that require further reflection and research.
... The relationship between mother's use of alcohol and the lasting impact on the child is a focus in the articles identified from a public health perspective (Corrigan, Shah, Lara, Mitchell, Combs-Way, Simmes and Jones, 2018;Corrigan et al., 2017;Zizzo and Racine, 2017). Other disciplines identified in the literature include neuropsychology Pei et al., 2017;Glass and Mattson, 2017;Fitzpatrick, Latimer, Olson, Carter, Oscar, Lucas, Doney, Salter, Try, Hawkes, Fitzpatrick, Hand, Watkins, Tsang, Bower, Ferriera, Boulton and Elliot, 2017;Fitzpatrick, Oscar, Carter, Elliott, Latimer, Wright and Boulton, 2017); criminal justice perspective Tait et al., 2017;Flannigan et al., 2018); child health, social work and child welfare (Mukherjee et al., 2017;Kapasi and Brown, 2017;Hafekost et al., 2017;Bakhireva et al., 2017;Petrenko and Alto, 2017;Gibbs and Sherwood, 2017;Myra et al., 2018); the substance use field (Washio et al., 2017); nursing (Marcellus, 2017;Howlett et al., 2017), women's health (Cook, Green, de la Ronde, Dell, Graves, Ordean, Rutler, Steeves and Wong, 2017;Cook, Green, de la Ronde, Dell, Graves, Morgan, Ordean, Steeves and Wong, 2017;Hui et al., 2017;Hemsing et al., 2017;Osterman et al., 2017); health care ethics (Elias et al., 2018;Helgesson et al., 2018); and education (Millar et al., 2017). ...
... Tait (2003) challenged the construction of FASD as an indigenous issue and focused on the consequences of colonization and residential schools in Canadian history as having a significant relationship to issues with substance use. Poole (2008) as well as many other feminist scholars (Zizzo and Racine, 2017) repositions substance use as a response to historical trauma. More recent data tell us that indigenous people do not have higher risks for FASD than the population generally (Ospina and Dennett, 2013), while some current analysis suggests prevalence rates may be higher (Popova et al., 2017). ...
... Yet, it also tells us that we have been giving the general public the clear message that only a bad mother would have a child with FASD as it is the "100 percent preventable disability." Zizzo and Racine (2017) add messages to mothers can be contradictory while the "bad mother" dialogue acts as a barrier to care. The prevention literature, while focused on health outcomes, has created a dyadic position. ...
Purpose
The purpose of this paper is to conduct a scoping review of the literature to explore the many ways stigma affects people with FASD and to highlight the disciplines and places where discourse on FASD and stigma is taking place.
Design/methodology/approach
Searches were conducted in PubMed, ERIC, Family & Society Studies Worldwide, Families Studies Abstracts and Google Scholar between 2008 and 2018. Search terms focused on stigma, shame and the connection to FASD with a view to looking across social and medical science literature.
Findings
Searches identified 39 full text manuscripts, 13 of which were included in the scoping review. Stigma toward people with FASD exists in multiple professional forums across disciplines. The relationship between mother’s use of alcohol and the lasting impact on the child is a focus in the articles identified from a public health perspective. The review showed there was limited cross-disciplinary discussion evident. In total 13 articles were selected for inclusion in this review.
Research limitations/implications
Negative discourses predominate with little attention being paid to possible areas of success as well as cases of lower FASD impacts. There is a significant void in work focusing on positive outcomes for people with FASD. Such discourse would support a better understanding of pathways to more positive outcomes.
Originality/value
This paper highlights the issue of FASD and stigma through identification of relevant literature and expands the conversation to offer insights into the challenging terrain that individuals with FASD must navigate. The issue of stigma is not linked only to individuals with FASD but also their support systems. It is critical to recognize the multiple attributions of stigma to FASD in order to effectively take up conversations across and between disciplines to promote new discourses focused on de-stigmatization.
... Consequently, attitudes towards pregnant women who consume alcohol have changed over the years. Today, women who consume alcohol during pregnancy, and/or have a child with FASD, and individuals with FASD, are often stigmatized (Armstrong and Abel 2000;Bell et al. 2016; BMA Board of Science 2016; Corrigan et al. 2017;Elliott et al. 2006;Hoyme et al. 2016;Jacobs and Jacobs 2014;Montag 2016;Mukherjee et al. 2015;Schölin 2016;WHO 2014WHO , 2017Zizzo and Racine 2017). ...
... Public health messages often include warnings that there is no known amount of alcohol safe to drink during pregnancy and that alcohol can result in irreversible damage to the unborn child (Shankar 2016). According to Zizzo and Racine (2017), such messages promoting abstinence are unlikely to be optimal as they threaten women's autonomy. Also, abstinence might not be feasible for all pregnant women due to substance use dependence, low risk perceptions, a lack of self-efficacy, and perceived norms that consuming alcohol during pregnancy is common (Coathup et al. 2017;Crawford-Williams et al. 2015;Holland et al. 2016;Meurk et al. 2014;van der Wulp et al. 2015). ...
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.
... Although clear messaging and discourse that fosters negative public attitudes toward drinking while pregnant can be useful from a public health perspective (i.e., discouraging unhealthy behaviour at the population level), it could also unhelpfully stigmatise individual women who do drink [12,50]. The clarity and certainty of abstinence messaging could, in some cases, have an effect opposite to the one intended, rigidifying public opinion against women most in need of support, and driving those women 'underground' [31]. ...
... A clear tension exists between 1) public health and medical guidelines requiring clear and actionable messages; 2) ensuring that marginalized women feel supported throughout their pregnancies; and 3) the importance of communicating the truth about research findingseven if that truth involves complexities. If media were to communicate only the clear but rigid message of abstinence in all cases, then the previously outlined issues of stigmatisation could arise, along with questions about paternalistic approaches to women's healthcare [53]; however, if contradictions are reported without care, some worry that this could provide women with a "license to drink" [50]. In our sample, contradiction more often appeared without comment between, rather than within, articles. ...
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
... Proposals for use of biomarkers in "screening" without consent for their collection is striking, as is the advocacy of the expansion of monitoring activity by professionals, from preconception, across pregnancy, to beyond pregnancy. Presently, a critical response to advocacy of the sorts of practices is notable for its absence, with few exceptions (Zizzo and Racine 2017). Responses to practices described as "screening" that pay due attention to even "…cost, implication of false positives and false negatives" and the absence of "empirical evidence that such an initiative [universal screening] would result in substantial health benefits" (McLennan and Braunberger 2017, 181) are too few and far between. ...
... 62 Perhaps most concerning is that these narratives play into the stereotyped portrayals of who can be casual drinkers or binge drinkers, and have significant implications regarding the systemic sexism, racism, and classism in the prevention of FASD and the screening and brief intervention of all women. [62][63][64][65] Each of these sub-narratives are discussed below. Table 2 provides detailed examples of each sub-narrative. ...
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.
... The majority of the articles focused on the challenges to healthcare providers implementing screening and brief interventions including knowl edge of FASD and the effects of alcohol use in preg nancy, [81][82][83] workloads and competing priorities, [84][85][86] availability and implementation of screening tools and alcohol use guidelines, 82,84,85 a lack of continuity of care 84 and/or capacity to refer to supports follow ing screening, 81,82 (in)adequate support and train ing, 84,85 healthcare provider perceptions of alcohol use, 85,87 underreporting or nondisclosure of sub stance use on the part of women, 85,86 and confidence and competence to conduct screening and brief interventions. 82,83 The challenges with implementation related to stigma 88 and unrecognized social determinants of health 89 were further described. Women's education and race continued to have an impact on brief inter vention and screening practices, though this topic does remain relatively underexplored. ...
Background and objective
Fetal Alcohol Spectrum Disorder (FASD) prevention efforts have grown in the last 25 years to go beyond the moral panic that guided the early public awareness campaigns and policy responses. In Canada, a four-part model of FASD prevention has been developed and used that describes a continuum of multisectoral efforts for women, girls, children, and their support networks, including broad awareness campaigns, safe and respectful conversations around pregnancy and alcohol use, and holistic and wraparound support services for pregnant and postpartum women with alcohol, and other health and social concerns. The purpose of this article is to describe the state of the evidence on FASD prevention from 2015 – 2021, including the prevalence and influences on alcohol use during pregnancy, interventions at each of the four levels of the fourpart model, as well as systemic, destigmatizing, and ethical considerations.
Materials and methods
Using EBSCO Host, seven academic databases were annually searched for articles related to FASD prevention from 2015 – 2021. English language articles were screened for relevance to alcohol use in pregnancy and FASD prevention. Using outlined procedures for thematic analysis, the findings were categorized within the following key themes: prevalence and influences on women's drinking; Level 1 prevention; Level 2 prevention; Level 3 prevention; Level 4 prevention; and systemic, destigmatizing, and ethical considerations.
Results
From January 2015 – December 2020, 532 (n = 532) articles were identified that addressed the prevalence and influences on alcohol use during pregnancy, interventions at each of the four levels, and systemic, destigmatizing, and ethical considerations. The most recent research on FASD prevention published in English was generated in the United States (US; n = 216, 40.6%), Canada (n = 91, 17.1%), United Kingdom (UK; n = 60, 11.3%), and Australia (n = 58, 10.9%). However, there was an increase in the studies published from other countries over the last six years. The literature heavily focused on the prevalence and influences on alcohol use during pregnancy (n = 182, 34.2%) with an increase in prevalence research from countries outside of Canada, the US, Australia, and the UK and on Level 2 prevention efforts (n = 174, 32.7%), specifically around the efficacy and implementation of brief interventions. Across Level 1 and Level 2 prevention efforts, there was an increase in literature published on the role of technology in supporting health promotion, education, screening, and brief interventions. Attention to Levels 3 and 4 demonstrated nuanced multiservice, traumainformed, relational, and holistic approaches to supporting women and their children. However, efforts are needed to address stigma, which acted as a systemic barrier to care across each level of prevention.
Conclusion
Research and practice of FASD prevention has continued to grow. Through our generated deductive themes, this review synthesized the findings and demonstrated how the work on FASD prevention has been amplified in the recent years and how efforts to support women and children's health are complex and interconnected. The findings highlight the opportunities for prevention through research and evidenceinformed policy and practice.
... The majority of the articles focused on the challenges to healthcare providers implementing screening and brief interventions including knowl edge of FASD and the effects of alcohol use in preg nancy, [81][82][83] workloads and competing priorities, [84][85][86] availability and implementation of screening tools and alcohol use guidelines, 82,84,85 a lack of continuity of care 84 and/or capacity to refer to supports follow ing screening, 81,82 (in)adequate support and train ing, 84,85 healthcare provider perceptions of alcohol use, 85,87 underreporting or nondisclosure of sub stance use on the part of women, 85,86 and confidence and competence to conduct screening and brief interventions. 82,83 The challenges with implementation related to stigma 88 and unrecognized social determinants of health 89 were further described. Women's education and race continued to have an impact on brief inter vention and screening practices, though this topic does remain relatively underexplored. ...
Background and Objective: FASD prevention efforts have been expanded in the last 25 years to go beyond the moral panic that guided early public awareness campaigns and policy responses. In Canada, a Four-Part Model of FASD Prevention has been developed and used that describes a continuum of multi-sectoral efforts for women, girls, children, and their support networks, including broad awareness campaigns, safe and respectful conversations around pregnancy and alcohol use, and holistic and wraparound support services for pregnant and postpartum women with alcohol and other health and social concerns. The purpose of this article is to describe the state of the evidence on FASD prevention from 2015 – 2021, including the prevalence and influences on alcohol use during pregnancy, interventions at each of the four levels of the Four-Part Model, as well as systemic, destigmatizing, and ethical considerations.
Materials and Methods: Using EBSCO Host, seven academic databases were annually searched for articles related to FASD prevention from 2015 – 2021. English language articles were screened for relevance to alcohol use in pregnancy and FASD prevention. Using outlined procedures for thematic analysis, the findings were categorized within the following key themes: prevalence and influences on women’s drinking; Level 1 prevention; Level 2 prevention; Level 3 prevention; Level 4 prevention; and systemic, destigmatizing, and ethical considerations.
Results: From January 2015 – December 2020 n = 532 articles were identified that addressed the prevalence and influences on alcohol use during pregnancy, interventions at each of the four levels, and systemic, destigmatizing, and ethical considerations. The most recent research on FASD prevention published in English was generated in the United States (US; n = 216, 40.6%), Canada (n = 91, 17.1%), the United Kingdom (UK; n = 60, 11.3%), and Australia (n = 58, 10.9%). However, there was an increase in studies published from other countries over the last six years. The literature heavily focused on prevalence and influences on alcohol use during pregnancy (n = 182, 34.2%), with an increase of prevalence research from countries outside of Canada, the US, Australia, and the UK, and on Level 2 prevention efforts (n = 174, 32.7%), specifically around the efficacy and implementation of brief interventions. Across Level 1 and Level 2 prevention efforts, there was an increase in literature published on the role of technology in supporting health promotion, education, screening, and brief interventions. Attention to Levels 3 and 4 demonstrated nuanced multi-service, trauma-informed, relational, and holistic approaches to supporting women and their children. However, efforts are needed to address stigma, which acted as a systemic barrier to care across each level of prevention.
Conclusion: Research and practice on FASD prevention has continued to expand. Through our generated deductive themes, this review synthesized the findings and demonstrated how the work on FASD prevention has been amplified in recent years and how efforts to support women and children’s health are complex and interconnected. The findings highlight opportunities for prevention through research and evidence-informed policy and practice.
... 62 Perhaps most concerning is that these narratives play into the stereotyped portrayals of who can be casual drinkers or binge drinkers, and have significant implications regarding the systemic sexism, racism, and classism in the prevention of FASD and the screening and brief intervention of all women. [62][63][64][65] Each of these sub-narratives are discussed below. Table 2 provides detailed examples of each sub-narrative. ...
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.
... 38,42 The recommendation to (2) explore patients' individual preferences, beliefs and coping styles regarding uncertainty and to adapt communication accordingly was (re)iterated in 11 publications. 5, [45][46][47][48][49][50][51][52][53][54] In two cases, this recommendation was empirically supported. One observational study found that cancer patients with a more active problem-solving coping style preferred receiving explicit prognostic information from their physician. ...
Background
Health‐care providers increasingly have to discuss uncertainty with patients. Awareness of uncertainty can affect patients variably, depending on how it is communicated. To date, no overview existed for health‐care professionals on how to discuss uncertainty.
Objective
To generate an overview of available recommendations on how to communicate uncertainty with patients during clinical encounters.
Search strategy
A scoping review was conducted. Four databases were searched following the PRISMA‐ScR statement. Independent screening by two researchers was performed of titles and abstracts, and subsequently full texts.
Inclusion criteria
Any (non‐)empirical papers were included describing recommendations for any health‐care provider on how to orally communicate uncertainty to patients.
Data extraction
Data on provided recommendations and their characteristics (eg, target group and strength of evidence base) were extracted. Recommendations were narratively synthesized into a comprehensible overview for clinical practice.
Results
Forty‐seven publications were included. Recommendations were based on empirical findings in 23 publications. After narrative synthesis, 13 recommendations emerged pertaining to three overarching goals: (a) preparing for the discussion of uncertainty, (b) informing patients about uncertainty and (c) helping patients deal with uncertainty.
Discussion and conclusions
A variety of recommendations on how to orally communicate uncertainty are available, but most lack an evidence base. More substantial research is needed to assess the effects of the suggested communicative approaches. Until then, health‐care providers may use our overview of communication strategies as a toolbox to optimize communication about uncertainty with patients.
Patient or public contribution
Results were presented to stakeholders (physicians) to check and improve their practical applicability.
... In the current sample, the most influential perceived barriers to screening were patient denial/resistance to treatment, time limitations, and patient sensitivity to screening. It is possible that perceived patient denial, resistance, and sensitivity reflect providers' concern about stigmatizing patients (Corrigan et al., 2018;Zizzo and Racine, 2017). Yet previous surveys showed that most pregnant women believe screening for alcohol use is important and do not mind being asked questions about their own use Seib et al., 2012). ...
Background
Alcohol use during pregnancy can have a variety of harmful consequences on the fetus. Lifelong effects include growth restriction, characteristic facial anomalies, and neurobehavioral dysfunction. This range of effects is known as fetal alcohol spectrum disorders (FASD). There is no amount, pattern, or timing of alcohol use during pregnancy proven safe for a developing embryo or fetus. Therefore, it is important to screen patients for alcohol use, inform them about alcohol's potential effects during pregnancy, encourage abstinence, and refer for intervention if necessary. However, how and how often nurses and midwives inquire about alcohol drinking during pregnancy or use recommended screening tools and barriers they perceive to alcohol screening has not been well established.
Methods
This survey was sent to about 6,000 American midwives, nurse practitioners, and nurses who provide prenatal care about their knowledge of the effects of prenatal alcohol exposure, the prevalence of alcohol use during pregnancy, and practices for screening patients’ alcohol use. Participants were recruited by e‐mail from the entire membership roster of the American College of Nurse‐Midwives.
Results
There were 578 valid surveys returned (about 9.6%). Analyses showed that 37.7% of the respondents believe drinking alcohol is safe during at least one trimester of pregnancy. Only 35.2% of respondents reported screening to assess patient alcohol use. Only 23.3% reported using a specific screening tool, and few of those were validated screens recommended for use in pregnant women. Respondents who believe alcohol is safe at some point in pregnancy were significantly less likely to screen their patients.
Conclusions
Respondents who reported that pregnancy alcohol use is unsafe felt more prepared to educate and intervene with patients regarding alcohol use during pregnancy and FASD than respondents who reported drinking in pregnancy was safe. Perceived alcohol safety and perceived barriers to screening appeared to influence screening practices. Improving prenatal care provider knowledge about the effects of prenatal alcohol exposure and the availability of valid alcohol screening tools will improve detection of drinking during pregnancy, provide more opportunities for meaningful intervention, and ultimately reduce the incidence of FASD.
... In the 1970s and 1980s, when the diagnosis was first constructed, a "conservative political climate" likely contributed to centering the conversation about FASD on personal responsibility (Armstrong and Abel 2000). Although the diagnosis initially focused on the children of "chronic alcoholic women" alone (Jones et al. 1973), researchers and clinicians soon expanded the definition to suggest "that any drinking by any pregnant woman was dangerous" (Armstrong 1998) -a narrative we still see in individual-focused abstinence-based public health messages (Zizzo and Racine 2017). Armstrong (1998) points to early medical writing about "fetal alcohol syndrome" Aspler et. ...
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.
Objectives
This study aimed to explore the ethical challenges faced by healthcare professionals (HCPs) in managing children and adolescents with neurodevelopmental disorders (NDDs) in Lebanon. The primary research question addressed how HCPs navigate ethical dilemmas related to patient autonomy, surrogate decision-making and communication in the context of severe cognitive impairments.
Design
Qualitative, cross-sectional study using semi-structured interviews. Thematic analysis was applied to identify key ethical challenges in clinical practice.
Setting
Participants recruited from a range of healthcare specialties, including paediatric neurology, general paediatrics and psychiatry, and registered with the Lebanese Order of Physicians.
Participants
Sixteen HCPs, including paediatric neurologists and psychiatrists, participated in the study. Participants were selected based on their experience in treating children and adolescents with NDDs. There were no exclusion criteria based on gender, ethnicity or years of experience.
Interventions
No formal interventions were applied. Participants were interviewed about their experiences and ethical challenges in managing patients with NDD.
Primary and secondary outcome measures
The primary outcome was the identification of ethical dilemmas faced by HCPs in clinical decision-making with patients with NDD. Secondary outcomes included insights into the strategies employed by HCPs to balance patient autonomy with surrogate decision-making and the communication challenges they face with patients’ families.
Results
Thematic analysis revealed several key ethical challenges, including (1) balancing patient autonomy with the need for surrogate decision-making, (2) tailoring healthcare to individual cognitive abilities and (3) navigating the complexities of communication with patients and their families. Participants emphasised the importance of assessing decision-making capacity on a case-by-case basis. The study also highlighted the need for specialised, patient-centred approaches that respect autonomy while considering the practical limitations imposed by severe cognitive impairments.
Conclusions
This study provides critical insights into the ethical considerations faced by HCPs in managing children and adolescents with NDDs. Further research is needed to develop training programs for HCPs that address these ethical challenges and promote patient-centred decision-making.
Fetal Alcohol Spectrum Disorder (FASD) is the disability associated with prenatal alcohol exposure (PAE). Because it is linked specifically to maternal alcohol consumption, FASD presents several unique ethical challenges for professionals (e.g., clinicians), families, and those living with FASD. Foremost of these is balancing the need for strong prevention messaging regarding the dangers of PAE with the stigma and blame that may be placed on mothers who have consumed alcohol in their pregnancy. Given the negative stereotypes associated with FASD, there is controversy about the value, advantages, and disadvantages of conferring and receiving this diagnosis for individuals and families. This chapter discusses the ethical challenges associated with crafting effective and non-stigmatizing public health messaging about FASD, issues of mother-blame and the villainizing of women who consume alcohol in pregnancy, and an overview of some of the ethical considerations in the assessment, diagnosis, treatment, and support of individuals and families living with FASD. The chapter also offers recommendations for improving our approach and support of these individuals and their families and creating programs and services which are both welcoming and effective.
Prenatalna izloženost alkoholu jedan je od glavnih preventabilnih uzroka razvojnih teškoća. Konzumiranje alkohola u trudnoći povećava rizik za pojavu širokog raspona poremećaja koji se zajednički nazivaju fetalni alkoholni spektar poremećaja. Fetalni alkoholni spektar poremećaja obuhvaća četiri kliničke dijagnoze - fetalni alkoholni sindrom, djelomični fetalni alkoholni sindrom, neurorazvojni poremećaj povezan s alkoholom i urođene mane povezane s alkoholom. Osobe s fetalnim alkoholnim spektrom poremećaja susreću se s različitim izazovima u svom svakodnevnom životu, kao i članovi njihovih obitelji. Cilj ovog preglednog rada je prikazati, sumirati i problematizirati spoznaje vezane uz fetalni alkoholni spektar poremećaja, rizične čimbenike za razvoj fetalnog alkoholnog spektar poremećaja, teškoće, socijalne rizike i socijalne probleme osoba s fetalnim alkoholnim spektrom poremećaja, ali i različite oblike i programe podrške obiteljima osoba s fetalnim alkoholnim spektrom poremećaja. Za zaključiti je kako različiti socijalni rizici i problemi osoba s fetalnim alkoholnim spektrom poremećaja i članova njihovih obitelji generiraju nove i dodatne socijalne rizike i probleme s kojima se susreću te kako je potrebno pružati sveobuhvatnu podršku kako osobama s fetalnim alkoholnim spektrom poremećaja, tako i članovima njihovih obitelji.
Background
Screening for fetal alcohol spectrum disorder (FASD) has been identified as a promising approach to improve recognition, understanding and effective response to the unique needs of those with FASD in criminal legal settings. However, to date, there has been limited synthesis of relevant screening tools, indicators, or implementation considerations in this context.
Aims
The present review aimed to synthesise evidence and develop a conceptual framework for understanding how, when, why, for whom and by whom FASD screening tools, items and/or indicators and characteristics serve to accurately identify people with FASD in criminal legal contexts, with consideration of individual and system needs relevant to effective implementation and response.
Methods
A preregistered search was conducted using a modified realist review framework for both peer‐reviewed articles and grey literature. Included sources were available in English, which focused on individuals with prenatal alcohol exposure and/or FASD with criminal legal involvement and offered new empirical evidence. Sources were reviewed using the Quality Control Tool for Screening Titles and Abstracts by Second Reviewer framework, extracted using a structured coding form and narratively synthesised.
Results
The search yielded 52 sources, 11 FASD screening tools designed for or applied in criminal legal settings and 38 potential FASD indicators or characteristics relevant to identifying people who may have FASD in criminal legal settings, organised into six conceptually related domains. There was limited evidence supporting the psychometric properties of screening tools across populations or settings, though growing evidence highlights the promise of some instruments. Although few studies characterised potential considerations to be made when implementing a screening tool or approach, both system and individual level needs related to recognising and effectively responding to FASD in criminal legal contexts were identified, and findings revealed strong support among legal and clinical professionals regarding the need for FASD screening in these settings.
Conclusions
Findings of this review can be used to inform the development, selection, implementation and evaluation of FASD screening tools in criminal legal settings and underscore a continued need for enhanced resources, policy and cross‐sectoral response to better support the needs of people with FASD in the criminal legal contexts.
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
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
Ethical and social issues permeate all aspects of fetal alcohol spectrum disorder (FASD) from prenatal alcohol exposure to the challenges experienced throughout the lives of those living with FASD. Unlike other disabilities, the acknowledgment of the diagnosis, exceptional and individualized needs of children, youth, adults along with their families and caregivers is lacking. The result is ongoing stigma that profoundly impacts the identity of those with lived experience and limits their access to quality, consistent lifelong supports. Engaging others in changing the dialogue and moving to a person-centered, possibilities model for successful life outcomes is the focus of this chapter.KeywordsFetal alcohol spectrum disorderFASDEthicsStigmaSocial issues
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
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.
The prevalence of prenatal reporting to child protection is estimated to be 3% of Australian pregnancies. Understanding risk factors associated with prenatal child protection involvement is critical in identifying the needs of families who may benefit from early intervention. This paper reports findings of a case file review examining characteristics of families reported prenatally. Unit-record administrative data were extracted for unborn children reported to child protection in a single Australian jurisdiction during 2014. Intake reports relating to a 20% random sample (n=131 unborn children) were coded using a tailored coding guide developed for this study. Most families were reported to be experiencing three or more risk factors, including current or previous intimate partner violence (70% of families), parental alcohol and other drug use (63%), parental mental health concerns (58%) or parent criminal activity (34%). Over one-third of parents in the sample had themselves experienced abuse and neglect as children. In families with more than one child, more than 90% of older siblings of unborn children had been the subject of a previous report. Supports must address multiple co-occurring problems, often in the context of personal and familial histories of child abuse and neglect, meaning that risks are intergenerational and enduring.
Objectives
The purpose of the current study was to examine whether a self-report measure identifies prenatal substance use and predicts resulting adverse birth outcomes in a large cohort using electronic medical records.
Methods
Pregnant patients who were admitted between 2014 and 2015 at Christiana Care Health System and delivered singleton birth were included in the analyses ( N = 11,020). Participant demographic information, pregnancy comorbidities, self-reported substance use, and birth outcomes were retrieved from electronic medical records. Detailed descriptive analyses of prenatal substance use were conducted, and logistic models were evaluated for the associations between substance use and each birth outcome (preterm birth, low birth weight, neonatal intensive care unit admission).
Results
The average maternal age was 30 years (standard deviation: 6), 37% receiving Medicaid. Over 58% were White, 26% were Black, and 13% were Hispanic. Cigarette smoking only showed the highest prevalence among substance users (53%). Self-reported cigarette smoking and illicit drug use other than marijuana significantly predicted all three adverse birth outcomes (Adjusted Odds Ratio [AOR] range: 1.33 (95% Confidence Interval [CI]: 1.08–1.64)–3.09 (95% CI: 2.03–4.67)). Nonresponders to the cigarette smoking question also significantly predicted two adverse birth outcomes of preterm birth delivery (AOR: 4.16; 95% CI: 1.27–14.71) and having low birth weight babies (AOR: 3.50; 95% CI: 1.04–12.61). Conclusions/Importance: Prenatal cigarette smoking only had the highest prevalence, and co-use with illicit drugs was also high, leading to significant associations with adverse birth outcomes. The study findings indicate that the self-report measurement is a useful tool to identify prenatal substance use and predict resulting adverse birth outcomes.
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.
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.
Gathering information about drinking during pregnancy is one of the most difficult aspects of studying fetal alcohol spectrum disorders (FASD). This information is critical to linking specific risk factors to any particular diagnosis within the FASD continuum. This article reviews highlights from the literature on maternal risk factors for FASD and illustrates that maternal risk is multidimensional, including factors related to quantity, frequency, and timing of alcohol exposure; maternal age; number of pregnancies; number of times the mother has given birth; the mother's body size; nutrition; socioeconomic status; metabolism; religion; spirituality; depression; other drug use; and social relationships. More research is needed to more clearly define what type of individual behavioral, physical, and genetic factors are most likely to lead to having children with FASD.
In November 2011, the citizens of Mississippi voted down Proposition 26, a "personhood" measure that sought to establish separate constitutional rights for fertilized eggs, embryos, and fetuses. This proposition raised the question of whether such measures could be used as the basis for depriving pregnant women of their liberty through arrests or forced medical interventions. Over the past four decades, descriptions of selected subsets of arrests and forced interventions on pregnant women have been published. Such cases, however, have never been systematically identified and documented, nor has the basis for their deprivations of liberty been comprehensively examined. In this article we report on 413 cases from 1973 to 2005 in which a woman's pregnancy was a necessary factor leading to attempted and actual deprivations of a woman's physical liberty. First, we describe key characteristics of the women and the cases, including socioeconomic status and race. Second, we investigate the legal claims made to justify the arrests, detentions, and forced interventions. Third, we explore the role played by health care providers. We conclude by discussing the implications of our findings and the likely impact of personhood measures on pregnant women's liberty and on maternal, fetal, and child health.
Reports on threshold level for fetal alcohol exposure using data from 2 longitudinal studies (A. P. Streissguth et al; see PA, Vol 71:3676 and J. L. Jacobson; see PA, Vol 80:41734) on prenatal alcohol exposure and neurobehavioral development in humans. Dose–response relationships for drinking during pregnancy are described, alternative approaches for determining threshold levels are suggested, and data on the thresholds found for neurobehavioral outcomes are reviewed. Findings suggest that the neurobehavioral effect threshold in humans is 7–28 standard drinks per wk, as measured prior to pregnancy recognition or at mid pregnancy. Fewer than 7 standard drinks per week appeared to have no neurobehavioral effect. It is suggested that because human threshold values are based on average group effects, one cannot infer a defined exposure threshold as individual tolerance, both of the mother and the fetus, can differ greatly from average group results. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
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.
Cigarette packages in most countries carry a health warning; however, the position, size and general strength of these warnings vary considerably across jurisdictions.1 Article 11 of the WHO Framework Convention on Tobacco Control (FCTC) and the Article 11 Guidelines adopted at the Third Conference of the Parties in November 2008 have put the spotlight on the inclusion of pictures on tobacco package health warnings. Beginning with Canada in 2001, 28 countries have introduced pictorial warnings and many other countries are in the process of drafting regulations for pictorial warnings (Box 1 and Box 2). This paper presents a brief review of the research studies that support pictorial warnings, reviewed in greater depth by Hammond1 and by the International Tobacco Control (ITC) Policy Evaluation Project.2
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.
Moderate to heavy levels of prenatal alcohol exposure have been associated with alterations in child behavior, but limited data are available on adverse effects after low levels of exposure. The objective of this study was to evaluate the dose-response effect of prenatal alcohol exposure for adverse child behavior outcomes at 6 to 7 years of age.
Beginning in 1986, women attending the urban university-based maternity clinic were routinely screened at their first prenatal visit for alcohol and drug use by trained research assistants from the Fetal Alcohol Research Center. All women reporting alcohol consumption at conception of at least 0.5 oz absolute alcohol/day and a 5% random sample of lower level drinkers and abstainers were invited to participate to be able to identify the associations between alcohol intake and child development. Maternal alcohol, cigarette, and illicit drug use were prospectively assessed during pregnancy and postnatally. The independent variable in this study, prenatal alcohol exposure, was computed as the average absolute alcohol intake (oz) per day across pregnancy. At each prenatal visit, mothers were interviewed about alcohol use during the previous 2 weeks. Quantities and types of alcohol consumed were converted to fluid ounces of absolute alcohol and averaged across visits to generate a summary measure of alcohol exposure throughout pregnancy. Alcohol was initially used as a dichotomous variable comparing children with no prenatal alcohol exposure to children with any exposure. To evaluate the effects of different levels of exposure, the average absolute alcohol intake was relatively arbitrarily categorized into no, low (>0 but <0.3 fl oz of absolute alcohol/day), and moderate/heavy (>/=0.3 fl oz of absolute alcohol/day) for the purpose of this study. Six years later, 665 families were contacted. Ninety-four percent agreed to testing. Exclusions included children who missed multiple test appointments, had major congenital malformations (other than fetal alcohol syndrome), possessed an IQ >2 standard deviations from the sample mean, or had incomplete data. The Achenbach Child Behavior Checklist (CBCL) was used to assess child behavior. The CBCL is a parent questionnaire applicable to children ages 4 to 16 years. It is widely used in the clinical assessment of children's behavior problems and has been extensively used in research. Eight syndrome scales are further grouped into Externalizing or undercontrolled (Aggressive and Delinquent) behavior and Internalizing or overcontrolled (Anxious/Depressed, Somatic Complaints, and Withdrawn) behaviors. Three syndromes (Social, Thought, and Attention Problems) fit neither group. Higher scores are associated with more problem behaviors. Research assistants who were trained and blinded to exposure status independently interviewed the child and caretaker. Data were collected on a broad range of control variables known to influence childhood behavior and/or to be associated with prenatal alcohol exposure. These included perinatal factors of maternal age, education, cigarette, cocaine, and other substances of abuse and the gestational age of the baby. Postnatal factors studied included maternal psychopathology, continuing alcohol and drug use, family structure, socioeconomic status, children's whole blood lead level, and exposure to violence. Data were collected only from black women as there was inadequate representation of other racial groups.
Statistical analyses were performed using the SPSS statistical package. Frequency distribution, cross-tabulation, odds ratio, and chi(2) tests were used for analyzing categorical data. Continuous data were analyzed using t tests, analyses of variance (ANOVAs) with posthoc tests, and regression analysis.
Testing was available for 501 parent-children dyads. Almost one fourth of the women denied alcohol use during pregnancy. Low levels of alcohol use were reported in 63.8% and moderate/heavy use in 13% of pregnancies. Increasing prenatal alcohol exposure was associated with lower birth weight and gestational age, higher lead levels, higher maternal age, and lower education level, prenatal exposure to cocaine and smoking, custody changes, lower socioeconomic status, and paternal drinking and drug use at the time of pregnancy. Children with any prenatal alcohol exposure were more likely to have higher CBCL scores on Externalizing (Aggressive and Delinquent) and Internalizing (Anxious/Depressed and Withdrawn) syndrome scales and the Total Problem Score. The odds ratio of scoring in the clinical range for Delinquent behavior was 3.2 (1.3-7.6) in children with any prenatal exposure to alcohol compared with nonexposed controls. The threshold dose was evaluated with the 3 prenatal alcohol exposure groups. One-way ANOVA revealed a significant between group difference for Externalizing (Aggressive and Delinquent) and the Total Problem Score. (ABSTRACT TRUNCATED)
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.
Background:
Although many programs targeting fetal alcohol spectrum disorder (FASD) are implemented, the province of Alberta is still lacking information on costs of FASD.
Objectives:
To estimate the costs of FASD in Alberta based on available US and Canadian research on costs of FASD, and Alberta data.
Methods:
Two types of costs were estimated. The annual long-term economic cost of FASD, which referred to a projected amount of money incurred by lives of the cohort of children born with FASD each year, was estimated by multiplying the lifetime cost of caring for each child born with FASD with the number of children born with FASD each year. The annual short-term economic cost of FASD, which referred to the amount of money incurred by people who are presently living with FASD, was estimated by using a FASD cost calculator online at http://www.online-clinic.com. Both were societal costs adjusted to 2008 Canadian dollars.
Results:
The annual long-term economic cost from the disorders rose from 400 million each year for the Alberta economy. The annual short-term economic cost for FASD in Alberta was from 143 million, and the daily cost for FASD in Alberta was from 316 thousand.
Conclusion:
These numbers suggest a need for a provincial FASD prevention strategy. The costs of FASD can be used to evaluate the benefits of prevention programs to society.
Prenatal exposure to alcohol can damage the developing fetus and is the leading preventable cause of birth defects and intellectual and neurodevelopmental disabilities. In 1973, fetal alcohol syndrome was first described as a specific cluster of birth defects resulting from alcohol exposure in utero. Subsequently, research unequivocally revealed that prenatal alcohol exposure causes a broad range of adverse developmental effects. Fetal alcohol spectrum disorder (FASD) is the general term that encompasses the range of adverse effects associated with prenatal alcohol exposure. The diagnostic criteria for fetal alcohol syndrome are specific, and comprehensive efforts are ongoing to establish definitive criteria for diagnosing the other FASDs. A large and growing body of research has led to evidence-based FASD education of professionals and the public, broader prevention initiatives, and recommended treatment approaches based on the following premises:▪ Alcohol-related birth defects and developmental disabilities are completely preventable when pregnant women abstain from alcohol use.▪ Neurocognitive and behavioral problems resulting from prenatal alcohol exposure are lifelong.▪ Early recognition, diagnosis, and therapy for any condition along the FASD continuum can result in improved outcomes.▪ During pregnancy:◦no amount of alcohol intake should be considered safe;◦there is no safe trimester to drink alcohol;◦all forms of alcohol, such as beer, wine, and liquor, pose similar risk; and◦binge drinking poses dose-related risk to the developing fetus.
Moms' moderate drinking does not affect kids' cognition
The diagnosis of Fetal Alcohol Spectrum Disorders (FASDs) is embedded in a matrix of biological, social and ethical processes, making it an important topic for crossdisciplinary social and ethical research. This article reviews different branches of research relevant to understanding how FASD is identified and defined and outlines a framework for future social and ethical research in this area. We outline the character of scientific research into FASD, epidemiological discrepancies between reported patterns of maternal alcohol consumption during pregnancy and the incidence of FASD, and the social and ethical considerations that may impact on who is, and is not, diagnosed. We highlight what further research investigating FASD diagnostic processes, as well as the multi-generational impacts of FASD, is needed. Important research priorities are to: 1) enumerate the variety of stakeholders involved in seeking FASD diagnoses; 2) understand the experiences and perspectives of mothers from different backgrounds who have consumed alcohol during pregnancy and their affected children; and 3) collect health histories of maternal alcohol consumption in families to determine the effect of FASD at sub-cultural and cultural levels.
Experimental animal studies and epidemiologic investigations report the developmental toxicity associated with alcohol that paternal alcohol consumption caused retardation of growth, malformations, reduction of body weight, and mortality in offspring. Although numerous studies on paternal alcohol exposure showed transgenerational effects, the toxic effects varied widely due to differences in the way of exposure to alcohol, and in the endpoints assessed in each study. In the current study, we investigated transgenerational toxicities in offspring, both in fetal and postnatal stages with paternal exposure to various alcohol concentrations. Agenesis and skull malformation (exencephaly) were clearly observed in fetuses by paternal exposure. We also found that paternal alcohol exposure affected major organ weights of postnatal offspring. Our findings suggest that paternal alcohol consumption prior to conception represents a potential risk to fetal and postnatal development.
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.
Early identification of and intervention for fetal alcohol spectrum disorder (FASD) has been shown to optimize outcomes for affected individuals. Detecting biomarkers of prenatal alcohol exposure (PAE) in neonates may assist in the identification of children at risk of FASD enabling targeted early interventions. Despite these potential benefits, complicated ethical issues arise in screening for biomarkers of PAE and these must be addressed prior to the implementation of screening programs. Here, we identify and comment, based on a North American perspective, on concerns raised in the current ethical, social, and legal literature related to meconium screening for PAE. Major ethical concerns revolve around the targeting of populations for PAE screening, consent and respect for persons, stigma and participation rates, the cost-benefit analysis of a screening program, consequences of false-positive and false-negative test results, confidentiality and appropriate follow-up to positive screen results, and the use of screen results for criminal prosecution. We identify gaps in the literature on screening for PAE, most notably related to a lack of stakeholder perspectives (e.g., parents, healthcare providers) about screening and the ethical challenges it presents.
To conduct a combined analysis of the estimated effects of maternal average weekly alcohol consumption, and any binge drinking, in early to mid pregnancy on general intelligence, attention, and executive function in 5-year-old children.
Follow-up study.
Neuropsychological testing in four Danish cities 2003-2008.
A cohort of 1628 women and their children sampled from the Danish National Birth Cohort.
Participants were sampled based on maternal alcohol consumption during early pregnancy. At age 5 years, the children were tested for general intelligence, attention, and executive function. The three outcomes were analysed together in a multivariate model to obtain joint estimates and P values for the association of alcohol across outcomes. The effects of low to moderate alcohol consumption and binge drinking in early pregnancy were adjusted for a wide range of potential confounding factors.
Wechsler Preschool and Primary Scale of Intelligence-Revised (WPPSI-R), the Test of Everyday Attention for Children at Five (TEACh-5), and the Behavior Rating Inventory of Executive Functions (BRIEF) scores.
Multivariate analyses showed no statistically significant effects arising from average weekly alcohol consumption or any binge drinking, either individually or in combination. These results replicate findings from separate analyses of each outcome variable.
The present study contributes comprehensive methodological and statistical approaches that should be incorporated in future studies of low to moderate alcohol consumption and binge drinking during pregnancy. Furthermore, as no safe level of drinking during pregnancy has been established, the most conservative advice for women is not to drink alcohol during pregnancy. However, the present study suggests that small volumes consumed occasionally may not present serious concern.
On May 23, in the continuation of a four-decade trend, smoking in New York City parks, beaches, and pedestrian malls became illegal. But absent direct health risks to others, such bans raise questions about the acceptable limits for government to impose on conduct.
to establish national standards of care for the screening and recording of alcohol use and counselling on alcohol use of women of child-bearing age and pregnant women based on the most up-to-date evidence.
published literature was retrieved through searches of PubMed, CINAHL, and the Cochrane Library in May 2009 using appropriate controlled vocabulary (e.g., pregnancy complications, alcohol drinking, prenatal care) and key words (e.g., pregnancy, alcohol consumption, risk reduction). Results were restricted to literature published in the last five years with the following research designs: systematic reviews, randomized control trials/controlled clinical trials, and observational studies. There were no language restrictions. Searches were updated on a regular basis and incorporated in the guideline to May 2010. Grey (unpublished) literature was identified through searching the websites of health technology assessment (HTA) and HTA-related agencies, national and international medical specialty societies, clinical practice guideline collections, and clinical trial registries. Each article was screened for relevance and the full text acquired if determined to be relevant. The evidence obtained was reviewed and evaluated by the members of the Expert Workgroup established by the Society of Obstetricians and Gynaecologists of Canada. The quality of evidence was evaluated and recommendations were made according to guidelines developed by the Canadian Task Force on Preventive Health Care.
the quality of evidence was rated using the criteria described by the Canadian Task Force on Preventive Health Care (Table 1).
the Public Health Agency of Canada and the Society of Obstetricians and Gynaecologists of Canada. ENDORSEMENT: these consensus guidelines have been endorsed by the Association of Obstetricians and Gynecologists of Quebec; the Canadian Association of Midwives; the Canadian Association of Perinatal, Women's Health and Neonatal Nurses (CAPWHN); the College of Family Physicians of Canada; the Federation of Medical Women of Canada; the Society of Rural Physicians of Canada; and Motherisk. SUMMARY STATEMENTS: 1. There is evidence that alcohol consumption in pregnancy can cause fetal harm. (II-2) There is insufficient evidence regarding fetal safety or harm at low levels of alcohol consumption in pregnancy. (III) 2. There is insufficient evidence to define any threshold for low-level drinking in pregnancy. (III) 3. Abstinence is the prudent choice for a woman who is or might become pregnant. (III) 4. Intensive culture-, gender-, and family-appropriate interventions need to be available and accessible for women with problematic drinking and/or alcohol dependence. (II-2).
1. Universal screening for alcohol consumption should be done periodically for all pregnant women and women of child-bearing age. Ideally, at-risk drinking could be identified before pregnancy, allowing for change. (II-2B) 2. Health care providers should create a safe environment for women to report alcohol consumption. (III-A) 3. The public should be informed that alcohol screening and support for women at risk is part of routine women's health care. (III-A) 4. Health care providers should be aware of the risk factors associated with alcohol use in women of reproductive age. (III-B) 5. Brief interventions are effective and should be provided by health care providers for women with at-risk drinking. (II-2B) 6. If a woman continues to use alcohol during pregnancy, harm reduction/treatment strategies should be encouraged. (II-2B) 7. Pregnant women should be given priority access to withdrawal management and treatment. (III-A) 8. Health care providers should advise women that low-level consumption of alcohol in early pregnancy is not an indication for termination of pregnancy. (II-2A).
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.
In Canada the incidence of Fetal Alcohol Spectrum Disorder (FASD) is estimated to be 1 in 100 live births. FASD is the leading cause of developmental and cognitive disabilities in Canada. Only one study has examined the cost of FASD in Canada. In that study we did not include prospective data for infants under the age of one year, costs for adults beyond 21 years or costs for individuals living in institutions.
To calculate a revised estimate of direct and indirect costs associated with FASD at the patient level.
Cross-sectional study design was used. Two-hundred and fifty (250) participants completed the study tool. Participants included caregivers of children, youth and adults, with FASD, from day of birth to 53 years, living in urban and rural communities throughout Canada participated. Participants completed the Health Services Utilization Inventory (HSUI). Key cost components were elicited: direct costs: medical, education, social services, out-of-pocket costs; and indirect costs: productivity losses. Total average costs per individual with FASD were calculated by summing the costs for each in each cost component, and dividing by the sample size. Costs were extrapolated to one year. A stepwise multiple regression analysis was used to identify significant determinants of costs and to calculate the adjusted annual costs associated with FASD.
Total adjusted annual costs associated with FASD at the individual level was 19,842; 14,342 (95% CI, 12,986; 15,698) in the first study. Severity of the individual's condition, age, and relationship of the individual to the caregiver (biological, adoptive, foster) were significant determinants of costs (p < 0.001). Cost of FASD annually to Canada of those from day of birth to 53 years old, was 4.12 billion; $6.4 billion).
Study results demonstrated the cost burden of FASD in Canada was profound. Inclusion of infants aged 0 to 1 years, adults beyond the age of 21 years and costs associated with residing in institutions provided a more accurate estimate of the costs of FASD. Implications for practice, policy, and research are discussed. Key words: Alcohol, pregnancy, cost, economic burden, fetal alcohol spectrum disorder.
Worldwide epidemiological studies on the effects of drinking during pregnancy on birth weight and prematurity were surveyed. Far more studies have reported no significant effects on birth weight than have reported significant decreases. Statistical analyses of the means from the prospective studies in this area indicated that both maternal smoking and alcohol consumption during gestation are associated with a significant decrease in birth weight. The effect of smoking is three times greater than the effect of alcohol. When the data were stratified by smoking status, maternal alcohol consumption did not have a significant effect on birth weight for non-smokers, but among smokers there was a significant linear trend with a threshold for decreased birth weight at about an average of two drinks per day. There was also a significant pattern of increased birth weight associated with low levels of alcohol consumption, suggesting an inverted 'J-shaped' function between drinking during pregnancy and birth weight.
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ensemble des troubles causés par l'alcoolisation foetale; ethique; santé des femmes; soins de santé préventifs
- Mots Clés
MOTS CLÉS : ensemble des troubles causés par l'alcoolisation foetale;
ethique; santé des femmes; soins de santé préventifs; autonomie
personnelle
ETHICAL CHALLENGES IN FASD PREVENTION
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