To read the whole newsletter and learn how you can become a participant click here UofC Developmental Neuroimaging Newsletter
Dr. Theresa Tam, the Chief Public Health Officer of Canada, has just released a report summarizing the state of public healthcare in Canada. The 2019 report lists stigma as the major public health concern impacting the health and wellbeing of all Canadians.
Stigma is a negative stereotype or a “labelling of differences” that begins to separate people into categories of “us” and “them”. Stigma acts as a barrier, influencing an individual’s willingness to seek help, their access to services, and the quality of care that they receive. As we move into a new decade we’re very pleased to see that Canada is placing a strong focus on addressing stigma at an individual level, an institutional level, a community level, and at a national level.
In our field, we know only too well the impact that stigma can have on the health of Canadians. Individuals with Fetal Alcohol Spectrum Disorder (FASD) and their caregivers experience stigma on a daily basis. Despite the fact that FASD affects approximately 4% of Canadians (more than cerebral palsy, autism, and Down syndrome combined), the disorder is not well understood by the majority of our population. As a result, the challenges individuals with FASD face with emotional regulation and social interaction are often seen as “bad behaviour” and “poor life choices” by our society. This stigma impacts every aspect of their lives, from employment and education to involvement with the justice system and everything in between. Additionally, mental health issues and substance use disorders frequently co-occur with FASD. As a result, individuals with FASD face stigma in a number of different forms.
We’ve developed online training courses for community members and frontline workers to help them better understand FASD and give them tools to improve service provision for individuals with FASD. This is just one of the ways we are working to overcome stigma at an individual, institution, community, and national level.
The stigma surrounding substance use, particularly surrounding substance use and pregnancy, is also a major barrier to FASD prevention efforts and FASD diagnosis. Pregnant women using substances often experience feelings of shame and depression that can impact their mental health and relationships with their families. Fear of judgement from service providers prevents women from accessing the necessary pregnancy and treatment supports they need.
Disclosing substance use during pregnancy can be an important factor in receiving an FASD diagnosis for a child. However, the stigma surrounding substance use during pregnancy, and the judgement and discrimination that women experience from service providers often inhibits this disclosure.
The portrayal of the fictional “Cynthia” in this report paints a very real picture of the experiences pregnant women using substances have had with the healthcare system. Informed by very similar experiences from real-world mothers, the Centre of Excellence for Women’s Health developed a wonderful resource that provides service providers in the substance use treatment and child welfare fields the tools to work collaboratively to improve the health of women and children in Canada.
We are heartened by the focus and attention that organizations across Canada are giving to better understand and address stigma in their practices. However, there is more work to be done. As an organization we are thrilled that Canada’s leadership is taking preliminary steps to raise awareness of the impacts of stigma and improve healthcare policies and practices to better health outcomes for Canadians. We look forward to seeing the impact this national attention will have on the treatment and service provision for both pregnant mothers using substances and individuals with FASD and their families.
As an organization, our New Year’s resolution is to continue to conduct research on FASD and stigma and to develop evidence-based resources to address the role that stigma plays in hindering FASD prevention, diagnosis, and supports. We look forward to the opportunity to lend our voices to Dr. Tam and her team of experts working so diligently to address stigma in Canada.
December is here, and with it comes all the excitement, anticipation, and tasty treats that the holiday season brings. Indulging is a common theme throughout the holiday season. We love to fill up on delicious chocolate, candy, and baked goods to keep our minds off the cold and snowy weather outside.
Alcohol is one common treat that we often overindulge in during the holiday season. Studies have found that in the wider population, individual’s alcohol consumption increases around specific social events (such as on days like Christmas Eve and New Year’s Eve) and data from the 2015 sales of wine and liquor show a massive spike in retail sales from December 6thto January 2nd.
Remember, there is no safe time, no safe amount, and no safe type of alcohol to consume during pregnancy. The safest and healthiest option is not to drink at all. However, abstaining from alcohol this holiday season can be a challenge as the holiday party invites and dinners just keep coming. If you’re finding not drinking a challenge this holiday season here’s some tips to keep in mind:
- You can say no
Remember it’s okay to prioritize your health and the health of your child over social events. You have every right to say “no” when you receive those invites to holiday celebrations. If you feel that attending these events will put you in a vulnerable situation, decline your invitation or make the decision to leave the party earlier. You don’t have to feel obligated to do anything you don’t feel comfortable doing this holiday season.
- Bring a sober buddy
Ask a friend or family member that you trust to refrain from drinking alcohol with you. This could just be for events that you attend together, or it could be the entire duration of your pregnancy. Be sure this is someone you trust to maintain their sobriety along with you, and have serious conversations beforehand
- Get help
This is the most important tip. You are not alone; many women find it challenging to abstain from alcohol during pregnancy. There are a number of resources and services available to help support you stop or even reduce your alcohol consumption. Check in with your family doctor or look into local services to find the best option for you and your family. It’s never too late!
Friends, families, and community members also play a key role in FASD prevention. Here are some tips that everyone can follow to help women have safe and healthy pregnancies this holiday season and beyond:
- Provide alcohol-free options
If you’re hosting a holiday party or event, make sure there are alcohol-free options available for those who are choosing not to drink. Fun and fancy alcohol-free mocktails can make people who aren’t drinking feel included, and they don’t draw attention to someone’s abstinence.
- Respect everyone’s choices
There are many reasons people might choose not to drink this holiday season. People might be pregnant, recovering from addiction, abstaining for health reasons, are the designated driver, or could simply not want to. Refrain from questions like “why aren’t you drinking?” sentences like “just one can’t hurt”. Drawing attention to someone’s sobriety can lead to feelings of stigmatization and isolation.
- Support pregnant mothers
You can help to support healthy pregnancies by hosting alcohol-free events or choosing to go alcohol-free along with your pregnant friends or family members.
If you do drink alcohol while pregnant please visit your doctor or reach out to a local prenatal support programs. They can provide you with the services and resources to support you and your baby’s health, such as:
- Nutrition and health counselling;
- Peer group support;
- Referral to counselling services;
- Help to deal with drug and alcohol issues;
- Support to stop smoking;
- And many more!
Have a safe and happy holiday season, from everyone at CanFASD!
Caregivers of individuals with FASD often experience a number of significant challenges in their daily lives. Some researchers have suggested that the stress experienced by caregivers of individuals with FASD is different, and more stressful, from that of other developmental disabilities, like autism spectrum disorder and down syndrome.
Factors such as educational supports, relief for caregivers, respect and assistance from professionals, information, and personal support networks are integral to achieving successful outcomes for individuals with FASD, but caregivers often report not having access to the supports and services needed to successfully care for their child. It is critical to not only care for the individual with FASD, but to also care for the caregivers raising and supporting individuals with FASD.
The authors of this report explored the current body of literature that investigates the experiences of caregivers in supporting individuals with FASD. Although the research team explores FASD from a UK lens, they acknowledge that approximately 50% of the studies analyzed in this research are from Canada.
The authors of this study identified four major themes regarding caregivers’ experiences in supporting individuals with FASD:
Living and coping with FASD
Caregivers identified that caring for an individual with FASD can have a negative effect on their well-being, as well as the family relationships and dynamics. The stress caregivers experience could be a result of a number of factors, including limited professional supports, lack of knowledge or training regarding an FASD diagnosis, and managing comorbid disabilities and conditions. Caregivers use a number of parenting strategies in order to adapt to their family circumstances, manage their caregiver stress, and improve outcomes for their children. The future was a common area of focus for caregivers, as they expressed concern about, or hope for, what comes next for their children.
Stigma and blame
Experiences of stigma and feelings of guilt and blame were prevalent. Caregivers of individuals with FASD feel isolated and judged by the public, feel guilt for drinking during pregnancy, feel shame for being unable to meet the complex needs of their children, and perceive judgement from professionals and community members in regard to their child’s behaviour.
A formal diagnosis can help caregivers and individuals with FASD better understand their unique needs and challenges and can help caregivers access specialized supports they may not have previously had access to. However, caregivers found that getting a diagnosis for their child was extremely difficult as a result of lack of awareness, training, or understanding amongst health care professionals. Caregivers, as a result, felt that they had unrealistic expectations for their children because they were not provided with a good understanding of FASD.
The theme of support was common, related to caregivers receiving formal and informal supports that were needed to assist them in caring for an individual with FASD. Formal supports often included referrals to services, medications, counselling for caregivers and caregiver support groups. Informal supports involved physical assistance and emotional support from spouses and family members. Caregivers believe that effective supports can improve outcomes for families, help children with FASD transition to adulthood, and help individuals with FASD achieve some level of independence. However, the researchers identified that a lack of understanding of FASD in the health care and social services community significantly impacted the supports caregivers had access to.
- Improve training and guidance and increase understanding of prenatal alcohol exposure and FASD among health care professionals and related health and social service providers;
- Training on FASD prevention, diagnosis, and support should be integrated into postsecondary studies and should be provided as part of professional development; and
- Worldwide, FASD diagnostic guidelines should follow the Canadian guidelines as a model and incorporate guidelines that diagnose the full range of fetal alcohol spectrum disorders. These guidelines should be made available to all health care practitioners and emphasize the need for testing to exclude other disorders.
Take home message
Caregivers and families experience numerous and significant impacts in relation to understanding FASD, obtaining an FASD diagnosis, and managing and supporting individuals with FASD through their lifetime. A lack of understanding by health care and social service providers was considered a key barrier to accessing effective resources and supports. Improved training, resources, and FASD diagnostic guidelines for health care practitioners is essential for improving outcomes for individuals, caregivers, and families.
Authors: Nikolina Angelova, Juliet Brown, Naomi Fearns, Sarah Harley, Moray Nairn
Organization: Healthcare Improvement Scotland
Date: January 2019
Click here to read the full report