It’s a Shame! Stigma Against Fetal Alcohol Spectrum Disorder: Examining the Ethical Implications for Public Health Practices and Policies

Bell, Emily; Andrew, Gail; Pietro, Nina Di; Chudley, Albert E.; Reynolds, James N.; Racine, Éric

doi:10.1093/phe/phv012

Cited by 63 publications

(67 citation statements)

References 38 publications

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“…40 The most predominant concerns precluding recording an FASD diagnosis relate to the stigma. Bell et al 41 theorised that this stigma falls into three areas: (i) personal responsibility and blame towards the biological mothers, including perceptions around blameworthiness, negative judgements if a women discloses prenatal alcohol consumption, media reports discussing criminalisation of women who admit to drug and alcohol use during pregnancy and the significant burden of shame; (ii) felt and enacted stigma experienced by children and their families, including discrimination against children with FASD, labelling behaviours as 'naughty' or 'deliberate', feelings of being misunderstood and blamed for their learning difficulties and having their capabilities underestimated; and (iii) anticipated life trajectories for individuals with FASD, that is the potential of a person with FASD to thrive is peppered by the belief about a future life of crime or drug/alcohol misuse. This negative public attitude also impacts on the self-esteem of these individuals.…”

Section: Clinical Experience Of Fasd Assessment and Diagnosismentioning

confidence: 99%

Responding to fetal alcohol spectrum disorder in Australia

Shelton

Reid

Till

et al. 2018

J Paediatrics Child Health

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Fetal alcohol spectrum disorder (FASD) is a significant public health issue in Australia that is poorly diagnosed, chronic and costly. FASD is a diffuse acquired brain injury secondary to prenatal alcohol exposure. The prevalence rate of FASD among the general population in Australia is currently unknown; however, an Australian study in a selected high‐risk population reported some of the highest rates of FASD in the world. A common misconception among clinicians is that a child must have ‘the face’ of FASD to have the disorder. This is incorrect. The three sentinel facial features only occur in the minority of individuals with FASD. FASD should be considered as a ‘whole body’ disorder as increased susceptibility to chronic health problems suggests suboptimal in utero environments places the individual at risk of later disease. Clinicians are reluctant to consider FASD as a possible diagnosis because of the concern of inducing stigma; however, this concern is neither supported by the evidence nor patient stories. The Australian Guide to the Diagnosis of FASD is now available to assist health professionals in providing timely and accurate diagnoses, which can lead to improved outcomes via evidence‐based intervention and is an important first step in future prevention.

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Section: Clinical Experience Of Fasd Assessment and Diagnosismentioning

confidence: 99%

Responding to fetal alcohol spectrum disorder in Australia

Shelton

Reid

Till

et al. 2018

J Paediatrics Child Health

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“…The stigma can be felt by many, including children and adults who have FASD, their families, and especially their mothers. 18 Paradoxically, well-intentioned prevention messages that stress the preventability of FASD or focus exclusively on the mother's behaviour or role in the development of FASD can inadvertently contribute to blame and shame. Prevention messaging thus risks perpetuating stigma and promoting the idea that women who give birth to children with FASD are irresponsible and careless mothers who are at fault.…”

Section: Stigma and Blame Create Barriers To Carementioning

confidence: 99%

“…Prevention messaging thus risks perpetuating stigma and promoting the idea that women who give birth to children with FASD are irresponsible and careless mothers who are at fault. 5,[18][19][20] The risk of perpetuating stigma is heightened when prevention messaging neglects both the factors that may lead a woman to drink while pregnant (e.g., social pressures, being unaware of or not wanting to reveal the pregnancy, coping strategies) 21 and other factors that can modulate the susceptibility to the development of an FASD (e.g., nutrition, smoking, and socio-economic effects).…”

Section: Stigma and Blame Create Barriers To Carementioning

confidence: 99%

“…18 Indeed, stigmatizing attitudes and behaviours from health care practitioners have been identified as a prevalent problem in the provision of care to pregnant women who use licit and illicit drugs. 19,48 Thus, it is essential that health care practitioners refrain from exhibiting these attitudes and behaviours and adopt a nonjudgemental approach.…”

Section: How To Communicate Prevention Messages Given the Potential Fmentioning

confidence: 99%

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Ethical challenges in FASD prevention: Scientific uncertainty, stigma, and respect for women’s autonomy

Zizzo

Racine

2017

Can J Public Health

Self Cite

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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.KEY WORDS: Fetal alcohol spectrum disorders; ethics; women's health; preventive health services; personal autonomy La traduction du résumé se trouve à la fin de l'article.

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“…Finally, what types of stigma play a role and need to be considered while developing a program? Are there any further ethical considerations to address [31, 32] ?…”

Section: Recommendationsmentioning

confidence: 99%

Fetal Alcohol Spectrum Disorders (FASD): an Approach to Effective Prevention

Roozen

Black²,

Peters

et al. 2016

Curr Dev Disord Rep

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Purpose of ReviewThe objective of the current contribution is to propose an evidence-based, six-step approach to develop effective programs for prevention of fetal alcohol spectrum disorders.Recent FindingsDespite widespread campaigns aimed to reduce prenatal alcohol exposure, the number of affected children continues to be high. Current strategies to reduce prenatal alcohol exposure may be ineffective or counterproductive. However, proven principles of health promotion could be applied to reduce drinking in pregnancy. One such approach is Intervention Mapping (IM), a six-step procedure based on proven principles to change behaviors.SummaryFASD affects all communities and is an underestimated problem worldwide. Programs based on proven principles of behavior change are warranted. Program developers can use pre-existing protocols and strategies from evidence-based practice, such as Intervention Mapping. Developers who plan their preventive programs in a systematic and evidence-based manner increase the chances of success in reducing prenatal alcohol exposure and FASD.

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It’s a Shame! Stigma Against Fetal Alcohol Spectrum Disorder: Examining the Ethical Implications for Public Health Practices and Policies

Cited by 63 publications

References 38 publications

Responding to fetal alcohol spectrum disorder in Australia

Responding to fetal alcohol spectrum disorder in Australia

Ethical challenges in FASD prevention: Scientific uncertainty, stigma, and respect for women’s autonomy

Fetal Alcohol Spectrum Disorders (FASD): an Approach to Effective Prevention

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