No full-text available
To read the full-text of this research,
you can request a copy directly from the authors.
“It’s ignorant stereotypes”: Key stakeholder perspectives on stereotypes associated with fetal alcohol spectrum disorder, alcohol, and pregnancy
Abstract
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.
... Fetal Alcohol Spectrum Disorder (FASD) is a lifelong disorder that impacts both brain and body functions. Regrettably, it has often been framed as having levels of impairment that preclude prosocial functioning, although more recent research has shown this to be a significant overgeneralization, tending towards stigmatization [1,2]. As well, more recent research shows that FASD exists across a broad range of expressions and thus also capacities. ...
... As Aspler et al. [1] note, stereotypes are powerful, persistent and create a narrowing view of the person. A balanced view of life matters so that support and interventions can be crafted to the reality of strengths, weaknesses and limitations and opportunities. ...
... The public perception of FASD is heavily driven by stereotypical presentations often seen in various forms of media [8]. Regrettably, the narrow, stigmatized story of living with FASD becomes "the" story which interferes with the ability for the living truth to be told and for people to have supportive places in society, FASD is also less accepted than other disabilities such as those with Autism Spectrum Disorder who also experience a range of behavioral, cognitive, emotional and physiological experiences [8,48] Family life is also impacted by FASD and ASD, although ASD will be seen as more receptive to intervention [1,47,48]. ...
Fetal Alcohol Spectrum Disorder (FASD) is considered a lifelong disability that has been framed by neurobiological descriptions focused on the brain. These are important features but fail to tell the story of living with FASD. By surveying those with FASD, this work expands upon prior survey work which illustrated a multitude of early onset physiological issues occurring at rates much higher than typical of the general population. The current project, again using an anonymous survey methodology, seeks to open up other direct experiences to better understand the complexity of living with FASD. An anonymous online survey was used to gather data on advresity in childhood, schooling, employment, housing and finances, involvement with the criminal justice system as well as relationships and parenting. Results inform how supports can be enhanced and targeted with a goal of improving the quality of life. The survey was developed by adults living with FASD who have served as a long-standing advocacy and educational group influencing policy and practice in the field.
... Fetal Alcohol Spectrum Disorder (FASD) is a lifelong disorder that impacts both brain and body functions. Regrettably, it has often been framed as having levels of impairment that preclude pro-social functioning, although more recent research has shown this to be a significant overgeneralization, tending towards stigmatization [1,2]. In addition, more recent research shows that FASD exists across a broad range of expressions and thus also capacities. ...
... As Aspler et al. [1] note, stereotypes are powerful and persistent, creating a narrowing view of the person. A balanced view of life matters so that support and interventions can be crafted to the reality of strengths, weaknesses, and limitations and opportunities. ...
... People with FASD are also less accepted than those other disabilities, such as those with Autism Spectrum Disorder, who also experience a range of behavioral, cognitive, emotional, and physiological experiences [8,47]. Family life is also impacted by FASD and ASD, although ASD is seen as more receptive to intervention [1,47,48]. ...
Fetal Alcohol Spectrum Disorder (FASD) is considered a lifelong disability that has been framed with neurobiological descriptions focused on the brain. These are important features but fail to tell the story of living with FASD. By surveying those with FASD, this work expanded upon prior survey work which illustrated a multitude of early-onset physiological issues occurring at rates much higher than is typical of the general population. The current project, again using an anonymous survey methodology, sought to open up other direct experiences to better understand the complexity of living with FASD. An anonymous online survey was used to gather data on adversity in childhood, schooling, employment, housing and finances, and involvement with the criminal justice system, as well as relationships and parenting. Results indicate high levels of adversity throughout the life span; vulnerability to manipulation, which is connected to involvement in the criminal justice system; struggles with housing; economic instability; and struggles maintaining employment, as well as difficulties with social and familial relationships. Systemic stigma was also identified. Suggestions are offered to inform others on how support can be enhanced and targeted with a goal of improving quality of life, as well as dealing with self-imposed stigma. The survey was developed by adults living with FASD who have served as a long-standing advocacy and educational group influencing policy and practice in the field.
... Fetal Alcohol Spectrum Disorder (FASD) is a lifelong disorder that impacts both brain and body functions. Regrettably, it has often been framed as having levels of impairment that preclude prosocial functioning, although more recent research has shown this to be a significant overgeneralization, tending towards stigmatization [1][2]. As well, more recent research shows that FASD exists across a broad range of expressions and thus also capacities. ...
... As Aspler et al. [1] note, stereotypes are powerful, persistent and create a narrowing view of the person. A balanced view of life matters so that support and interventions can be crafted to the reality of strengths, weaknesses and limitations and opportunities. ...
... The public perception of FASD is heavily driven by stereotypical presentations often seen in various forms of media [8]. Regrettably, the narrow, stigmatized story of living with FASD becomes "the" story which interferes with the ability for the living truth to be told and for people to have supportive places in society, FASD is also less accepted than other disabilities such as Autism Spectrum Disorder who also experience a range of behavioral, cognitive, emotional and physiological experiences [8,44] Family life is also impacted by FASD and ASD, although ASD will be seen as more receptive to intervention [1,[44][45]. ...
Fetal Alcohol Spectrum Disorder (FASD) is considered a lifelong disability that has been framed by neurobiological descriptions focused on the brain. These are important features but fail to tell the story of living with FASD. By surveying those with FASD, this work expands upon prior survey work which illustrated a multitude of early onset physiological issues occurring at rates much higher than typical of the general population. The current project, again using an anonymous survey methodology, seeks to open up other direct experiences to better understand the complexity of living with FASD. An anonymous online survey was used to gather data on advresity in childhood, schooling, employment, housing and finances, involvement with the criminal justice system as well as relationships and parenting. Results inform how supports can be enhanced and targeted with a goal of improving the quality of life. The survey was developed by adults living with FASD who have served as a long-standing advocacy and educational group influencing policy and practice in the field.
... Fetal Alcohol Spectrum Disorder (FASD) is a lifelong disorder that impacts both brain and body functions. Regrettably, it has often been framed as having levels of impairment that preclude prosocial functioning, although more recent research has shown this to be a significant overgeneralization, tending towards stigmatization [1,2]. As well, more recent research shows that FASD exists across a broad range of expressions and thus also capacities. ...
... As Aspler et al. [1] note, stereotypes are powerful, persistent and create a narrowing view of the person. A balanced view of life matters so that support and interventions can be crafted to the reality of strengths, weaknesses and limitations and opportunities. ...
... The public perception of FASD is heavily driven by stereotypical presentations often seen in various forms of media [8]. Regrettably, the narrow, stigmatized story of living with FASD becomes "the" story which interferes with the ability for the living truth to be told and for people to have supportive places in society, FASD is also less accepted than other disabilities such as Autism Spectrum Disorder who also experience a range of behavioral, cognitive, emotional and physiological experiences [8,44] Family life is also impacted by FASD and ASD, although ASD will be seen as more receptive to intervention [1,44,45]. ...
Fetal Alcohol Spectrum Disorder (FASD) is considered a lifelong disability that has been framed by neurobiological descriptions focused on the brain. These are important features but fail to tell the story of living with FASD. By surveying those with FASD, this work expands upon prior survey work which illustrated a multitude of early onset physiological issues occurring at rates much higher than typical of the general population. The current project, again using an anonymous survey methodology, seeks to open up other direct experiences to better understand the complexity of living with FASD. An anonymous online survey was used to gather data on advresity in childhood, schooling, employment, housing and finances, involvement with the criminal justice system as well as relationships and parenting. Results inform how supports can be enhanced and targeted with a goal of improving the quality of life. The survey was developed by adults living with FASD who have served as a long-standing advocacy and educational group influencing policy and practice in the field.
... 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. ...
... Research of other preventable conditions has identified persistent maternal self-blame and shame for their child's congenital condition, even if they were unaware of the potential effects of their actions during pregnancy on fetal development [35,36]. While mothers of children with cCMV are not to blame for their child's condition, mothers may still experience these feelings, which may originate from a perceived failure of upholding the cultural norm of being a "good mother" and protecting one's offspring from harm [36,37]. ...
Caring for a child with congenital cytomegalovirus (cCMV) can be costly for families, not only in terms of out-of-pocket expenses, but also in terms of caregiver time, relationships, career trajectories, and mental health. These additional burdens are sometimes referred to as “spillover effects”. As parents of children with cCMV, we, the authors of this article, discuss the impact that cCMV has had on our families. While multiple studies have reported on the epidemiology, prevention, screening, diagnosis, and management of cCMV, there has been minimal research regarding the possible impact on the family unit. In this narrative review, we discuss the various areas of the lives of families and caregivers that may be impacted by raising a child with cCMV. Whether children are minimally or severely affected by the sequelae of cCMV, they and their families merit the progression of awareness of the virus and governmental policies to help end cCMV. As the existing cCMV-specific literature is limited, we correlate studies of other childhood disabilities and find the mutuality experienced by families affected by cCMV.
... 1 These initial responses were framed in the context of shame, tragedy, and blame with the perception that women were, or would be, 'bad' or 'unfit' mothers if they consumed alcohol during pregnancy, and solely targeted women's individual behaviour changes. 1,2 While much of the stigma surrounding FASD and women's alcohol use in pregnancy continues even today, 3 in the last 25 years, FASD prevention efforts have grown beyond providing information about the risks of alcohol use in pregnancy to provide a holistic sup port system for women and girls in their child bearing years. In Canada, a fourpart model of FASD prevention was introduced in 2008, which has been used nationally and internationally to describe a continuum of multisectoral efforts for women, girls, children, and their support networks (see Figure 1). ...
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.
... If a woman has a child with fetal alcohol spectrum disorder (FASD), a lifelong developmental disability resulting from prenatal alcohol exposure, she often experiences many forms of judgment, assumptions, guilt, fear, and shame. 19,20 These judgments, assumptions, guilt, and shame associated with having to disclose or explain prenatal alcohol use usually surface out of concern for children with FASD, and not the mothers themselves-sometimes resulting in having children removed from their mother's care and placed in foster care, with no clear mandate to support the mother. [21][22][23][24] Stigma, blame, and shame attached to consuming alcohol during pregnancy for women is a real and significant barrier to accessing support, information, resources, and care for themselves, their child(ren), and their families. ...
Alcohol is legalized and used for a variety of reasons, including socially or as self-medication for trauma in the absence of accessible and safe supports. Trauma-informed approaches can help address the root causes of alcohol use, as well as the stigma around women's alcohol use during pregnancy. However, it is unclear how these approaches are used in contexts where pregnant and/or parenting women access care. Our objective was to synthesize existing literature and identify promising trauma-informed approaches to working with pregnant and/or parenting women who use alcohol. A multidisciplinary team of scholars with complementary expertise worked collaboratively to conduct a rigorous scoping review. All screening, extraction, and analysis was independently conducted by at least two authors before any differences were discussed and resolved through team consensus. The Joanna Briggs Institute method was used to map existing evidence from peer-reviewed articles found in PubMed, CINAHL, PsycINFO, Social Work Abstracts, and Web of Science. Data were extracted to describe study demographics, articulate trauma-informed principles in practice, and gather practice recommendations. Thirty-six studies, mostly from the United States and Canada, were included for analysis. Studies reported on findings of trauma-informed practice in different models of care, including live-in treatment centers, case coordination/management, integrated and wraparound supports, and outreach-for pregnant women, mothers, or both. We report on how the following four principles of trauma-informed practices were applied and articulated in the included studies: (1) trauma awareness; (2) safety and trustworthiness; (3) choice, collaboration, and connection; and (4) strengths-based approach and skill building. This review advances and highlights the importance of understanding trauma and applying trauma-informed practice and principles to better support women who use alcohol to reduce the risk of alcohol-exposed pregnancies. Relationships and trust are central to trauma-informed care. Moreover, when applying trauma-informed practices with pregnant and parenting women who use alcohol, we must consider the unique stigma attached to alcohol use.
... 1 These initial responses were framed in the context of shame, tragedy, and blame with the perception that women were, or would be, 'bad' or 'unfit' mothers if they consumed alcohol during pregnancy, and solely targeted women's individual behaviour changes. 1,2 While much of the stigma surrounding FASD and women's alcohol use in pregnancy continues even today, 3 in the last 25 years, FASD prevention efforts have grown beyond providing information about the risks of alcohol use in pregnancy to provide a holistic sup port system for women and girls in their child bearing years. In Canada, a fourpart model of FASD prevention was introduced in 2008, which has been used nationally and internationally to describe a continuum of multisectoral efforts for women, girls, children, and their support networks (see Figure 1). ...
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.
... Notably, although persons with FASD share some commonalities with other disability groups and complex populations, FASD is linked to a number of factors that distinguish it as a distinct disability with unique considerations [15,16]. Unique to this disability are the high levels of adverse outcomes frequently reported [28,29], including high rates of mental health issues and substance use challenges [30,31], justice system involvement [32], unique developmental and environmental considerations, and experiences of stigmatization [33][34][35]. The incorporation of individuals with FASD into existing systems of service delivery [15] is further compounded by the lack of evidence-based practices to support or guide the use of the CRPD in advocating for persons with FASD. ...
The purpose of this report is to identify how the United Nations Convention on the Rights of Persons with Disabilities (CRPD) can be used to improve service provision and government policies for persons with Fetal Alcohol Spectrum Disorder (FASD). It includes recommendations for how the CRPD could be used to advocate for improved outcomes and as a framework for future research, policy, and practice.
Available at: https://canfasd.ca/wp-content/uploads/publications/UNCRPD-and-FASD-final.pdf
Introduction
Developmental outcomes for children and young people with fetal alcohol spectrum disorder (FASD) are optimised if their needs are identified early. Yet, health workers miss vital opportunities to identify and respond to FASD due to a lack of support, knowledge and skills.
Methods
Through surveys and interviews, our study investigated what child and family health workers in an Australian metropolitan local health district understand, already do and want to learn about FASD.
Results
The study provided evidence of low FASD knowledge and confidence and a lack of referral options with some workers ‘patching together’ care planning in a ‘referral black hole’. Qualitative data provided insight into how skilled clinicians engage families in FASD assessment and negotiate gaps in clinical knowledge.
Discussion and Conclusions
Health workers in this study requested high‐quality training and the development of FASD practice guidelines to improve role clarity and clinical impact when working with FASD populations.
Aim
To explore the lived experiences of individuals with fetal alcohol spectrum disorder (FASD), their caregivers, and professionals working with individuals with FASD.
Method
We conducted a scoping review using qualitative methods to explore what it is like to live with FASD from the perspective of those living with FASD, their caregivers, and stakeholders experienced in working with individuals with FASD. We searched electronic databases and grey literature for research published between 2005 and 2022.
Results
The 47 studies included in this scoping review show that FASD affects people's lives on a daily basis. Individuals with FASD are aware of their disability and its effects. Caregivers face daily challenges raising children with FASD and are often left unsupported by professionals. Professionals are unprepared and frustrated when supporting someone with FASD.
Interpretation
FASD affects individuals, caregivers, and families on a daily basis; and they require improved support and funding.
What this paper adds
Professionals are overwhelmed and frustrated because of a lack of training and organizational support with regard to fetal alcohol spectrum disorder (FASD).
Extends on previous reviews with the inclusion of grey literature and professionals.
FASD is a highly stigmatized disorder that affects individuals with FASD, and their caregivers and families, on a daily basis.
Research is needed exploring the experiences of adults living with FASD and their siblings.
There is a lack of research involving indigenous populations and their experience with FASD.
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
This chapter provides an overview of the educational needs of school-aged children with fetal alcohol spectrum disorders (FASD). The chapter discusses school functioning, educational experiences, and outcomes of individuals with FASD. Included in the discussion are summaries of the education regulations for school-based services and best practices in public education that apply to school-aged children with FASD in the United States. The chapter concludes with a discussion about educational care for school-aged children with FASD. The discussion calls for an integrative approach to promote skill-building so that school-aged children FASD can succeed in their learning environment and transition into adulthood.KeywordsFetal alcohol spectrum disorderPrenatal alcohol exposure and learningEducational intervention planningSpecial education servicesDevelopmental disabilities
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
Drug and alcohol use during pregnancy is a complex public health issue. Women who use drugs and alcohol have poor reproductive health and poor contraceptive use and are at an increased risk of unplanned pregnancy. Alcohol consumption during pregnancy places the unborn child at risk of foetal alcohol syndrome and foetal alcohol spectrum disorder, whilst drug use during pregnancy increases the risk of neonatal abstinence withdrawal and lower birth weight and some may have long-term health and development impairments. Midwives and other healthcare professionals play an important role in supporting women through pregnancy; however, substance use can make this more challenging. Many women who use drugs during pregnancy report experiencing negative stereotyping and judgement from health and social care professionals. This, coupled with the stigma of using substances during pregnancy, is the biggest barrier to care. Despite this, many women who use drugs and alcohol are motivated to be ‘good’ mothers who love and care for their children. The health and social care outcomes for women who use drugs and alcohol rely on improving provision, which is inclusive and considerate of the needs of this population.
Central nervous system damage resulting from prenatal exposure to alcohol, often referred to as fetal alcohol spectrum disorders (FASD), commonly manifests as lacking cognitive functioning, problem solving, impulsivity, memory, executive functioning, and social skill deficits. For individuals with FASD, these brain-based deficits translate into impulsive behaviors and poorly thought-out decision-making, coupled with an inability to anticipate and recognize the sometimes very severe consequences of their behaviors. Not unexpectedly, individuals with FASD frequently find themselves disproportionately involved in the criminal justice system and mental health services. For some individuals with FASD, these behaviors can also include firesetting. First responders, like other health and legal professionals, are often unable to recognize the behavioral indicators of FASD, primarily due to a lack of training. As a result, firesetting behaviors are often attributed to deliberate, willful acts of delinquency, a desire to damage property, thrill seeking, or as attempts for personal gain, rather than being viewed as maladaptive attempts to solve problems by individuals who lack the tools to do this in more appropriate ways. These same skill deficits also present when individuals with FASD are interviewed about their involvement in such behaviors, sometimes resulting in confabulation, suggestibility, and false confessions. Further education and training in FASD are vital for first responders if they are to better support individuals with FASD and minimize their chances of becoming involved in firesetting behaviors. Furthermore, this training and education will help ensure that first responders can intervene in more appropriately when crisis situations do occur. This article will outline key behavioral symptoms of FASD as well as provide first responders with suggestions as to how to best support individuals when FASD is suspected. The brief quote that follows highlights some of the key challenges facing individuals with FASD and how poor decision-making and impulsiveness can result in severe consequences for the individual and those around them.
**SharedIt Link: https://rdcu.be/bThEj**
Bioethics has made a compelling case for the role of experience and empirical research in ethics. This may explain why the movement for empirical ethics has such a firm grounding in bioethics. However, the theoretical framework according to which empirical research contributes to ethics—and the specific role(s) it can or should play—remains manifold and unclear. In this paper, we build from pragmatic theory stressing the importance of experience and outcomes in establishing the meaning of ethics concepts. We then propose three methodological steps according to which the meaning of ethics concepts can be refined based on experience and empirical research: (1) function identification, (2) function enrichment, and (3) function testing. These steps are explained and situated within the broader commitment of pragmatic ethics to a perspective of moral growth and human flourishing (eudaimonia). We hope that this proposal will give specific direction to the bridging of theoretical and empirical research in ethics and thus support stronger actualization of ethics concepts.
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.
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.
Aim:
To identify and assess available evidence from qualitative studies exploring experiences of individuals living with fetal alcohol spectrum disorders (FASD) or those living with a child with FASD, as well as experiences of interventions aimed at supporting individuals with FASD and their families.
Method:
A systematic literature search was conducted in six electronic databases: PubMed, Embase, Cochrane Library, CINAHL, PsycINFO, and Scopus. Included studies were analysed using manifest content analysis. Methodological limitations and confidence in the evidence were assessed using a modified version of the Critical Appraisal Skills Programme and the Grading of Recommendations, Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative Research approach respectively.
Results:
Findings from 18 studies show that individuals with FASD experience a variation of disabilities, ranging from somatic problems, high pain tolerance, destructive behaviour, hyperactivity, and aggressiveness, to social problems with friendship, school attendance, and maintenance of steady employment. Most studies reported parents' experiences with FASD; parenting was viewed as a lifelong engagement and that the whole family is isolated and burdened because of FASD. People with FASD feel that their difficulties affect their daily life in a limiting way and make them feel different from others.
Interpretation:
From the perspective of primarily parents, individuals with FASD and their parents face many different difficulties, for which they need societal support.
What this paper adds:
Individuals with fetal alcohol spectrum disorders (FASD) feel their difficulties make them different from others. Parents think of their parenting as a lifelong engagement. There is a shortage of studies investigating experiences of children with FASD. There is a shortage of studies investigating experiences of interventions given to individuals with FASD.
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.
The Framework Method is becoming an increasingly popular approach to the management and analysis of qualitative data in health research. However, there is confusion about its potential application and limitations.
The article discusses when it is appropriate to adopt the Framework Method and explains the procedure for using it in multi-disciplinary health research teams, or those that involve clinicians, patients and lay people. The stages of the method are illustrated using examples from a published study.
Used effectively, with the leadership of an experienced qualitative researcher, the Framework Method is a systematic and flexible approach to analysing qualitative data and is appropriate for use in research teams even where not all members have previous experience of conducting qualitative research.
Background Research evaluating the experiences of birth and adoptive parents raising children with a fetal alcohol spectrum disorder (FASD) is needed to ascertain facilitating factors and barriers to successful family functioning. Qualitative approaches to parents' experiences can help us better understand in what ways families need support and can also be used to guide quantitative research in this area. Objectives The present study is a qualitative, descriptive investigation of parents' experiences raising children with FASD in an Alberta city and environs. Methods Eleven participants, consisting of biological (3), adoptive (7), and foster (1) parents were interviewed using an unstructured format in order to enable them to share their "as-is" experience. A phenomenological-hermeneutic approach and thematic analysis was used to analyze and organize the data into themes. Results Nine central themes were derived from the interviews: 1) something's not right; 2) receiving a diagnosis; 3) attitudes toward birth parents; 4) living in a war zone; 5) understanding my child; 6) getting support; 7) re-defining success; 8) lifelong parenting; and 9) my child's gifts. Sub-themes were derived from several of these central themes. Descriptions of central and sub-themes are provided as data from each are presented. Conclusions By better understanding parents' experiences, family members, teachers, professionals, support personnel, and the community can better support parents of children with FASD. This support is needed in order to promote stable environments for families raising children with FASD, which has been identified as a critical protective factor to promote lifelong successes for those living with the disorder. © 2010 Canadian Society of Pharmacology and Therapeutics. All rights reserved.
In this chapter, the author reflects on challenges associated with conducting focus group interviews with adults with fetal alcohol spectrum disorder (FASD)—a complex neurodevelopmental disability caused by alcohol exposure in utero. Given the heterogeneity of this diagnosis, people with FASD have different strengths and weaknesses. Therefore, for effective and ethical research inclusion, each person with FASD may need unique accommodations, which can help to both minimize concerns about unjust research exclusion and mitigate sources of vulnerability. To explore these issues, the author describes the focus group study, presents anticipated risks and challenges, explores critical stakeholder feedback, and addresses ethical tensions arising from the resulting protocol adjustments. This chapter demonstrates the importance of researchers remaining open to criticism and being willing to work through their moral discomfort.
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
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
This article describes the individual experiences of 5 students with Fetal Alcohol Spectrum Disorders (FASD) living in rural and urban Alaska. The article is based on the results of a 3 year qualitative study using interviews with and observations of the students, members of their family, and educational and medical professionals with whom they are involved. Findings highlight several major themes that include: (a) the person behind the face of FASD; (b) experiences of students with FASD including situations of competence and vulnerability; (c) anticipated trajectories that lead the students towards experiences of separateness and isolation; and (d) the social and cultural stigma of FASD. The article concludes with recommendations that service providers, educators, and policy makers can use to improve the education and community life for students with fetal alcohol spectrum disorders.
Given advances in Alzheimer’s disease (AD) research, some experts have proposed a state of “preclinical” AD to describe asymptomatic individuals displaying certain biomarkers. The diagnostic accuracy of these biomarkers remains debated; however, given economic pressures, this “diagnosis” may eventually reach consumers. Since evidence-based prevention and treatment options remain only modestly effective, patients may turn to complementary and alternative medicine (CAM). We explore ethical challenges associated with CAM use in preclinical AD. We first consider these issues through the liberal lens, which emphasizes informed choice while occasionally disregarding the complexity of decision making, at least as currently applied to CAM policies. We then broaden the liberal lens with a socio–contextual lens, which describes the impact of social context on choice. Finally, we describe an alternate lens (contextualized liberalism) and its practical health and policy implications while 1) building on the liberal commitment to autonomy and 2) recognizing contextual determinants of choice.
This paper advocates for increased news media analysis within the disability studies field. Using a media research project about Canadian news media coverage of disability, this paper explores the shifting nature of recent disability coverage within Canadian newspapers between 2009 and 2010. As a group of researchers in Canada and the USA, who have undertaken numerous content analyses of news media representations of disability, we argue that a paradigm shift is taking place in which some traditional news media representations of people with disabilities are now being framed through a disability rights lens. This paper’s analysis is based on data collected by the Toronto-based Disability Rights Promotion International (DRPI). The project investigates Canadian news coverage of disability issues through Joseph Gusfield’s theory of societal “ownership” of a public problem, which in this case means discrimination against and societal barriers for people with disabilities become identified problems that need to be solved within Canadian society.
Providing a general introduction to focus group research, Morgan includes the appropriate reasons for using focus groups and what you can expect to accomplish with them. He provides a brief history of focus groups, a discussion of when to use focus groups and why, and several brief case studies illustrating different uses of focus groups. The author covers the timeline and costs associated with focus groups, including a discussion of the ethical issues involved in focus group research. Thoroughly covering all the information to help you start your focus group project, this guidebook is appropriate for anybody beginning a focus group, as well as managers or clients who will be using focus groups.
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 li...
Accessible summary
Parents have told us what it is like to have a child with a diagnosis of foetal alcohol syndrome.
Listening to parent views is very important because parents want professionals to understand the support they need.
People do not know very much about foetal alcohol syndrome.
It is important to help parents of children with a disability to make sure that the children and families get the help they need.
Parents told us how they first knew their child had foetal alcohol syndrome, the problems they faced and how difficult they found it to get support.
Summary
Learning of a child’s disability can be a difficult time for any parent. Sensitive support is critical to ensuring parents understand the nature of the disability, the prognosis and services available to them. However, where the disability is not well understood, where professionals are not well informed and where pathways of care are not available, parents may be left feeling lonely, isolated and unable to cope. Foetal alcohol syndrome is a completely preventable cause of intellectual disability and is prevalent in all developing countries. Whilst research has focused on identification, diagnosis and epidemiology, understanding the psychosocial aspects of the impact of this disorder has been neglected resulting in a paucity of strategies to support parents. Understanding the needs of parents raising a child with foetal alcohol syndrome is central to providing well‐informed support for families. In this study, families shared their experiences of raising a child with foetal alcohol syndrome. These were then analysed using interpretative phenomenological analysis enabling themes to be identified which were core to understanding their journey.
Fetal alcohol spectrum disorder (FASD) is constituted by different net-works and institutions. I demonstrate that while the symptoms associated with FASD do not differ from childhood to adulthood, their conceptualization and thus societal and governmental responses to individuals with FASD change dramatic-ally. This research is theoretically grounded in Rose's work on psy-identities and Hacking's concept of a looping effect. To unpack the reconstitution of the FASD identity from childhood to adulthood I have identified two linked but distinct-ive loops — that of the promising child and the deviant adult. These two loops conceptualize the different institutions, stakeholders, and knowledges that take interest in the "FASD child" and those that constitute the "FASD adult" identity within the criminal justice system. Keywords: fetal alcohol spectrum disorder; identity; looping effect; psy-disci-pline; critical criminology; First Nations/Métis/Inuit communities Résumé. Les définitions liées à l'ensemble des troubles causés par l'alcoolisation foetale (ETCAF) proviennent de différents systèmes de réseaux et institutions. Je démontre que la conceptualisation des TCAF et les approches sociales et gou-vernementales envers ceux qui en souffrent changenr radicalement malgré le fait que les symptômes associés aux TCAF demeurent les mêmes de l'enfance à l'âge adulte. À l'intérieur de cette recherche, je me réfère au travail de Rose sur les «identités psy» et de Hacking sur l'effet de boucle. Afin de révéler la recons-titution de l'identité associée à l'adulte qui souffre de TCAF, j'ai identifié deux boucles qui sont à la fois liées et distinctes — celle de l'enfant prometteur et celle de l'adulte délinquant. Ces deux boucles nous aident à conceptualiser les diffé-rentes institutions, les parties prenantes et les connaissances qui s'intéressent à « l'enfant souffrant des TCAF » et ceux qui servent à définir l'adulte TCAF à l'intérieur du système pénal.
The focus group is a research method frequently used in the social sciences. It is particularly useful when researchers seek to discover participants' meanings and ways of understanding. In this paper, we relate the history of the focus group as a research tool, from its original uses by Lazarsfeld and Merton in early communications research to its decline in usage as social science research became more quantitative and experimental. We explore the recent revival of the focus group in audience reception studies, review contemporary uses of focus groups conducted within the critical tradition, and reappraise the method and its appropriateness for media and communications research. We argue that the focus group discussion should be regarded as a socially situated communication and discuss the various relations this may bear toward different approaches to mass communication, together with their implications for research practice.
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 evaluation of the charts of 23 offspring of a group of women ascertained purely by the history of maternal alcoholism indicates a perinatal mortality of 17%. In the survivors, borderline-to-moderate mental deficiency was the most frequent problem, occurring in 44%, while 32% had enough abnormal features from the physical examination alone to suggest the fetal alcohol syndrome. The frequency of adverse outcome in the pregnancies of chronically alcoholic women is of such a magnitude that serious consideration should be given toward early termination of pregnancy in such women.
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.
This article examines the portrayal of pregnancy and alcohol in thirty-six national network evening news broadcasts (ABC, CBS, NBC). Early coverage focused on white, middle-class women, as scientific authorities and government officials warned against drinking during pregnancy. After 1987, however, women who drank during pregnancy were depicted as members of minority groups and as a danger to society. The thematic transition began before warning labels appeared on alcoholic beverages and gained strength from official government efforts to prevent fetal alcohol syndrome. The greatest impetus for the revised discourse, however, was the eruption of a "moral panic" over crack cocaine use. By linking fetal harm to substance abuse, the panic suggested it was in the public's interest to control the behavior of pregnant women.
This study examined persistence in high school among students with Fetal Alcohol Spectrum Disorder (FASD) from the perspective of the adolescents themselves. Tinto's (1975, 1997) Student Integration Model (SIM) provided the theoretical framework for the research. This model consists of three factors: background characteristics, academic integration, and social integration.
A collective case study method involving 8 adolescents with FASD from Canada and the United States was used.
Although the students did not meet the usual academic standards and had acquaintances rather than friends, they perceived themselves as academically and socially successful. It was shown that persistence occurred largely because of the strong support of, and advocacy by, the adoptive parents.
Parental advocacy is an environmental factor that may protect adolescents with FASD from dropping out of high school.
The aim of this study was to describe the 'lived' experiences of New Zealand birth mothers, from pregnancy onwards, of a child/ren diagnosed with Fetal Alcohol Spectrum Disorder (FASD).
A qualitative paradigm was utilized so that the participants could tell their stories through words and text rather than collecting statistical data which is the domain of quantitative research. The adoption of a feminist standpoint theory bridged a communication gap, adjusted the balance of power within society and gave visibility and voice to the women. Eight New Zealand-resident multipara biological mothers ages 18 and over, who had nurtured or were still living with their affected offspring, were studied. Their ages ranged from 29 to 64. The mothers were interviewed in depth, face-to-face, using unstructured, open-ended questions. Data were analyzed using the constant comparative method.
The mothers described a range of issues of concern for their disabled offspring and themselves (as advocates) relating to health, social, educational, judicial systems, lack of knowledge by professionals and problems in diagnosis, to being oppressed and stigmatized. Cognitive concerns for the offspring included attention-deficit, absence of fear, diminished memory and comprehension and inability to acknowledge and understand consequences. Behavioural issues included excessive crying or no crying as a baby, lying, stealing, hyper-activity, aggressiveness, destructiveness, sexual promiscuity and few friends. Other issues of concern were delayed milestones and numerous health problems. All mothers stated that the pregnancy, labour and delivery of their child with FASD were different from their other non-compromised pregnancies/labours/deliveries. Most mothers said that the doctors used medical language which they did not understand, thus giving power to the former. Seven mothers were either married to or partners of alcoholics when they conceived their offspring with FASD. All mothers had been drinking alcohol before becoming pregnant. Six mothers came from drinking families. Most mothers continued to consume alcohol because they did not know that they had conceived. All mothers were unaware of FASD and its effects on the unborn child. Eight babies had low Apgar scores with an average of 6 (out of 10) and low birth weight (average 6lb 2oz). An Apgar score is a numerical expression of an infant's condition, usually determined at 60 seconds after birth, based on heart rate, respiratory efforts, muscle tone, reflex irritability and colour. All women were of middle to high socio-economic status. Seven mothers experienced family breakdown as a result of alcohol consumption by the biological father of the child with FASD. All women feared for their child's future.
Health, social, educational, judicial professionals, policy-makers and agencies, need to understand and be educated in the daily realities and complex problems that children with FASD and their families face. Only then will the correct diagnosis be made so that these individuals can receive the nurturing, needs, education, funding and support they require in order to live full and meaningful lives and have the quality of life they deserve.
Individuals with fetal alcohol spectrum disorder and experiences of stigma
- K Morrison
- K Harding
- L Wolfson
Can moral problems of everyday clinical practice ever be resolved? A proposal for integrative pragmatist approaches
- E Racine
Disabling imagery and the media: An exploration of the principles for media representations of disabled people
- C Barnes
Strengths among individuals with FASD
- K Flannigan
- K Harding
- D Reid
- F A Committee