Understanding Stigma to Improve the Lives of Those Affected by FASD

In recent years, legal and social challenges in different parts of the world have exposed some of the stigmatized reactions towards women who drink during pregnancy and their children who may suffer from FASD. Brought to the surface are negative public attitudes and prejudices about women who consume alcohol during pregnancy that, in turn, stereotype families and affected individuals. Consequently, those affected by FASD (children, adolescents, adults, and biological and non-biological families) may experience negative self-esteem, isolation, and reduced opportunities.

These effects reverberate throughout families and over the life course. A recent webinar on Understanding stigma to improve the lives of those affected by FASD argues that, as practitioners, we need a better picture of the stigma experienced by those affected by FASD, and opportunities to reflect on the messages about alcohol use and FASD that are communicated when we interact with pregnant women, children and their families. 

The presenters also argue that there is a need for others to understand the implications of alcohol use during pregnancy, especially on brain and behavior. This not only applies in the health system, but also in the education, social services and legal systems where families affected by FASD may be frequently encountered. 

Dr. Bell, the first presenter, obtained her PhD (psychiatry) from the University of Alberta in 2007 and later did postdoctoral research in the area of neuroethics. Until recently, she was Associate Researcher at the Neuroethics Research Unit in Montreal where her research focused on vulnerability and informed consent in invasive psychiatric research trials, ethical challenges in the development and application of biomarkers for neurodevelopmental disorders, and examination of the ethical implications of stigma in fetal alcohol spectrum disorders (FASD). Much of this research was conducted while she was a member of the Neuroethics Core of NeuroDevNet, a Canadian Network of Centre of Excellence. She remains deeply interested in health policy and youth mental health.

In the webinar, Dr. Bell shares a model of the stigma experienced by those affected by FASD to springboard discussion about whether and why understanding the negative beliefs and attitudes that fuel stigma is worthwhile. She makes the case that designing public health messages should include routine examination of the potential effects of the messages on psychological wellbeing of those affected by FASD.

Dr. Bell stresses that stigma leads to structural and personal discrimination in housing, jobs, and opportunities, and leads to isolation.She notes that it undermines help-seeking, negatively impacts self-esteem (self-stigma), further fuels misbeliefs, and discourages disclosure of symptoms and behaviours to health professionals.She quotes evidence from large social surveys of the general public on attitudes towards mental illness that have led to significant public awareness campaigns, such as Headstrong, the MHCC’s national youth anti-stigma initiative, the Bell “Let’s Talk” campaign, and the Mood Disorders Society of Canada’s Elephant in the Room anti-stigma campaign.

Dr Bell notes five reasons for the gaps in our understanding of stigma and FASD:

1. Lack of public data about attitudes.
2. Few qualitative studies of individuals with FASD.
3. Lower prevalence than mental illness.
4. Biological parents/children dyads missing from research.
5. Lack of advocates.

She lists the dominating themes of stigma that have been identified in relation to FASD as:

1. Personal responsibility and blame towards biological mothers.Mothers whoconsume alcohol while pregnant fear negative judgment by the public and healthcare workers.Mothers fear losing their children to child protective services.Certain jurisdictions have attempted to criminalize drinking during pregnancy.The underlying negative beliefs being demonstrated are that biological mothers who drink are failures; they are unfit to parent; they are criminals.What is not taken into account are the reasons that women drink; that women drink without knowing they are pregnant; that many factors impact the development of FASD.
2. Felt and enacted stigma experienced by children and their families.Children affected by FASD report difficulties making friends, perceptions of being different, and a lived experience of marginalization.Capacities are often underestimated, and children find themselves blamed for their learning challenges (neurodevelopmental disorders).The underlying negative beliefs being demonstrated are that children are naughty and responsible for bad behaviours and that children with neurodevelopmental disorders are meaningfully (in a negative way) different than their peers.What is not taken into account is that labels are tools for accessing services, but that people are not labels, and that there are different ways in which children can be supported to succeed at school.
3. Negative anticipated life trajectories for individuals with FASD.Public attitudes about criminality and anticipated trajectories are “a combination of perceptions about the disorder itself, and the reality of the individuals’ lives”. (Ryan & Ferguson, 2006)Stakeholders interacting with adults can adopt a frame that characterizes them as deviant – responsible for their problems but unable to manage their behaviours.The underlying negative beliefs being demonstrated are that there is rampant criminality, drug use, and alcohol use among those with FASD, and that multi-generational appearance of FASD is uncontrollable.What is not taken into account is the victimization of persons with FASD or the structural social inequalities that exist for those with FASD.

Dr. Bell points out how stigma is one of the reasons that designing effective prevention campaigns for FASD is difficult.“In general, negative responses indicated the need to tailor information to specific audiences, to increase sensitivity and understanding about the issues, to choose images and the tone of the campaign with care, to decrease stigma and blame, to show hope, to increase understanding of the role that partners, friends, families and communities play in preventing FASD, and to increase access to services.” (PHAC and Burgoyne, 2006.)

As a means of examining whether the messaging in our prevention (or other) campaigns is potentially stigmatizing, she cites a framework for thinking through a program’s ethical aspects (ten Have et al, 2013).

• Step One:Think of potential ethical pitfalls in a range of areas.
• Step Two:Identify under what conditions a program is likely to have positive or negative consequences.
• Use the outcomes of Step Two as the basis for creating recommendations.

Dr. Cook, the second presenter, graduated with a PhD in Reproductive Physiology from the Medical University of South Carolina in 1997 and has since also achieved an MBA from the University of Saskatchewan, specializing in Economics and Health Policy. Her professional career has focused on issues related to maternal-fetal medicine; specifically, substance abuse during pregnancy, preterm birth, Fetal Alcohol Spectrum Disorder (FASD) and Assisted Human Reproduction. She has gained expertise in clinical research and issues related to clinical practice for pregnant women and their children and program evaluation, as well as experience with population and epidemiology research. Early on in her career, she became involved with Aboriginal health research, especially as it related to the social determinants of health. This broadened her research perspective and she gained expertise related to suicide prevention, mental health and addictions, child development, communicable diseases, chronic diseases, health surveillance and National and International trends in morbidity and mortality.   

Dr. Cook joined the Society of Obstetricians and Gynaecologists of Canada as its first Scientific Director in 2014 and oversees all work related to Continuing Medical Education, Clinical Practice Guidelines, Research, Accreditation, Global Health and Indigenous Health. She is concurrently an Adjunct Professor to the department of Obstetrics and Gynecology at the University of Ottawa, appointed in 2002. 

Using the example of screening women for drinking alcohol during pregnancy and screening for possible prenatal alcohol exposure, Dr. Cook discusses how education and training can provide valuable opportunities for professional self-reflection. She also discusses how education impacts the way that front-line personnel interact with women during screening, and how it can alter the health outcomes for mothers and their children. The webinar emphasizes the valuable role of working in partnership to improve outcomes and experiences of those living with FASD.

Dr. Cook talks of the value of using screening, diagnosis and data to improve outcomes in FASD.She describes how, funded as a pilot/demonstration project to see if common data collection was possible, 45 Diagnostic multi-disciplinary teams across Canada were identified and worked together to develop “Child” and “Adult” FASData forms and guides with the help of clinic members.

The Universal FASData Form:

• Provides real-time information on the difficulties, challenges and needs of those who present for an FASD- related diagnosis
• Captures type of diagnosis, recommendations for interventions, specifics of assessments and demographics
• Provides the first accurate spectrum of functional diagnoses and actual treatment plans across clinical practice in any country

Information was collected anonymously and included:

• Demographics
• Specific diagnosis, the four–digit code, and the diagnostic scheme
• Brain evaluations
• Other brain diagnoses
• Management recommendations made in health, mental health, education and social services
• Secondary disabilities and other deficits/problems (adult form only)

The results of this sample indicated that there was not a common profile of functional deficits.There was no combination of 2 or 3 functional deficits that were statistically more likely than any others in children or in adults, but overall, impairment was more than initially thought.

She also reported that the Substance Abuse and Mental Health Services Administration (SAMHSA) in the US has recently published a Treatment Improvement Plan (TIP) for FASD, designed for service providers who are working in the substance abuse and/or mental health fields.It has been developed to provide tools and a process for identification of those who may have FASD or may be at risk for having a child with FASD.

The rationale behind the development of TIP is in response to concerns around:

• High rates of mental health (90%) and alcohol/drug problems in FASD.
• FASD is likely over-represented, but under identified, in community programs/agencies that provide substance abuse and mental health services.
• Substance abuse and mental health settings do not currently screen for FASD at intake.

It has been developed to provide an opportunity to implement brief, effective approaches to improve outcomes for affected individuals.

She goes on to describe a Canadian TIP Pilot Study, undertaken from January to May 2014, involving three large mental health/substance abuse treatment programs:Metis Child & Family Services – Snug Program (Edmonton, AB); Addictions Services (Edmonton, AB); Aventa (Calgary, AB).These programs were linked to diagnostic centres, trained to recognize & given tools to screen for substance use in pregnancy and FASD, and given info about referral/treatment pathways.

The results of the pilot study indicated:

• The early identification of at-risk women is important in reducing incidence of FASD
•  Potential cases of FASD not previously diagnosed
  • Referral pathways initiated
  • Screening in some substance abuse and mental health treatment settings is feasible
    • More difficult to implement in street outreach programs
    • Balance of tool use and clinical judgment
    • KNOWING that PAE may be a factor changed attitude, interactions and behaviour

Future plans include expanding and updating Dataform to include other Neurodevelopmental disorders; developing online training resources; implementing TIP in a wider range of settings; and exploring implementation partnerships with other sectors, such as the judicial system and social services.

Dr. Cook concludes by noting the following policy implications:

• Screening for FASD or risk at intake is an important step
• It is important to determine the prevalence of FASD in different sectors
• Understanding brain diagnoses and implications are critical for improving effectiveness of interventions
• Changes in program delivery may be essential to improve outcomes
• Education and training are key
  • The Society of Obstetricians and Gynaecologist’s Alcohol and Pregnancy Guidelines
  • CanFASD’s online education program for multi-disciplinary diagnostic teams