Did you ever think adolescents with FASD or PAE could practice social and cognitive skills in a virtual environment?

Rianne Spaans is a third-year doctoral student in the School and Clinical Child Psychology program at the University of Alberta thought so! Rianne, under the supervision of Dr. Jacqueline Pei and in collaboration with the “programming geniuses” at Technology in Education Specialization in the faculty of education at the University of Alberta are working to develop and test the effectiveness of a virtual environment intervention that targets social and cognitive skills for adolescents aged 13-18  with fetal alcohol spectrum disorder (FASD) or prenatal alcohol exposure (PAE).

This unique and engaging intervention takes place in a virtual environment, or what Rianne calls a “fancy video game.” The style of the game is mission impossible, where players interact online to solve the crime. Different social and cognitive skills are targeted by the types of games played or tasks completed. Such tasks progress in difficulty, starting off easy and becoming more difficult as the game continues.

Rianne explained one of the games “Car Thief,” that takes place in a chop shop where a team of 5 players works together to catch the bad guy that steals cars. The evidence they find in this particular game takes players through different scenarios such as avoiding guard dogs, disarming cameras and examining documents to find relevant names as clues to solve the case.

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Image from Virtual Environment “Car Thief” game, players distracting guard dogs.

Teams of players that work well together catch the bad guy. However, this is not without working on skills such as emotional regulation or attention span. Capture10.pngSome games, for example, are designed to induce frustration or distract players from the task at hand by decoys depending on how the team of players works together.
There are also features like a  “chill out space” where if players do become frustrated they can take a break.

To top it all off, this virtual environment was entirely developed from scratch, from the storyline and characters to the game programming!

Rianne pointed out that there is a need for interventions that engage adolescents stating “It is understandable why they [adolescents] are not wanting to stay in some intervention programs… most programs are boring.” They are just simply not targeting adolescents interests. Rianne is hoping that this project will expand the kinds of interventions out there for adolescents to include virtual environments. As well as to “jump start the development of interventions that are fun and engaging.”

The study discussed in this blog is titled “Social Skills Intervention for Adolescents: the use of a virtual environment” and is currently  adolescents aged 13 up to 18 years old with a diagnosis of FASD or PAE (suspected FASD) recruiting out of the Univeristy of Alberta located in Edmonton.

If you would like more information or to participate in this study, please contact Rianne Spaans at spaans@ualberta.ca

 

See below for more images from the virtual environment intervention!

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Edmonton Alberta is now home to a unique housing facility specifically for individuals diagnosed with fetal alcohol spectrum disorder (FASD). The Hope Terrace Permanent Supportive Housing (PSH) program includes access to a case management and 24/hour support team. This facility is owned by Homeward Trust with the Bissell Centre providing internal and external support services for residents.

Internal supports are provided by a case management team that is able to tailor programming and support to the resident. The needs addressed may range from mental health and addiction supports to daily living and financial skills, however, are unique to the individual needs of the resident.

The case management team’s support workers are able to accompany residents to various appointments and commitment and work to establish a sense of community through group outings and in-house cultural supports for indigenous folks.

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Image source: http://homewardtrust.ca/programs/completed-details.php?id=23

Bissel Centre website for contact & extended information.

Global News Edmonton also covered this story. Click on the link for the news article and footage.

 

Participants wanted for Canadian FASD Media Coverage Study! Please see the below for study information:

Participants wanted for a group interview study about FASD!
We want to talk to you about your experiences with FASD. In particular, we want to hear your thoughts and feelings about examples of Canadian FASD media coverage, to think about how to more effectively communicate information about FASD. Your perspective will be invaluable in helping us to better understand FASD, and the way it is discussed in the public sphere.
Who can participate?
We want to include key stakeholders, like: 1) adults with FASD; 2) parents of and caregivers for people with FASD; 3) healthcare professionals with experience diagnosing or caring for patients with FASD; and 4) FASD communicators (e.g., journalists, public health officials).
What does the study look like?
This study will involve participation in a 90-minute group interview in English. Each interview will include only one stakeholder group at a time (e.g., only adults with FASD, only parents). You will be compensated for your time.
How can I get involved?
If you feel you match the above criteria, please send an email to: john.aspler@ircm.qc.ca.
We will send you a brief online questionnaire to fill out, as well as the informed consent
document for you to look over when deciding whether or not to participate. Sending us an email does not mean you have agreed to participate, and you can choose to stop at any time.
For more information or if you have any questions, please contact John Aspler at:
john.aspler@ircm.qc.ca, or at (514) 987-5500 (extension 3356).

Study Title: Fetal alcohol spectrum disorder in the Canadian print news media: A study of media discourse and key stakeholder perspectives
This study is conducted by an interdisciplinary team of bioethicists and scientists:
John Aspler, BSc, Doctoral candidate, Neuroethics Research Unit, Institut de recherches cliniques de Montréal (IRCM).
Eric Racine, PhD, Director of the Neuroethics Research Unit, Institut de recherches cliniques de Montréal (IRCM), 110 avenue des Pins Ouest, Montréal QC H2W 1R7, Tel.: 514 987-5723, email: eric.racine@ircm.qc.ca.
James Reynolds, PhD, Centre for Neuroscience Studies, Queens University.

If you would like to read our previous blog post on FASD and Media Click here!

The following post will discuss the media and its over all impact on society, summarize the an Australian study on the topic of media portrayal and FASD, and how it all relates back to FASD Intervention across the lifespan. Enjoy!

mass-media-poster-11The media can be thought of like a massive complex web of communication and information that passes through many portals before being consumed by the public or members of a society. After awhile, this information, either explicitly or implicitly communicated becomes difficult to dissect and be critical of. Knowing what information and who is a credible source can be become a challenging task due to the vast amount of imposing information that we receive on a daily basis.

Unfortunatley we consume media whether we want to or not. Thus it becomes crucial to question media information and the stories we are being told as well as how they are being framed. Framing issues in a certain way is powerful and can be especially harmful when the media, regardless of its intention, releases  information in a  way that negatively impacts individuals.

The Research:

In the context of media and fetal alcohol spectrum disorder (FASD) researchers Equiagaray, Scholz, and Giorgi’s (2016) analyzed the way media portrays FASD and the controversial issues that surround it.

Equiagaray et al. (2016) utilized a framing analysis in order to answer their research question, “How is FASD framed by media reports?” They define “framing” from Enman (1993) as, “as a conceptual lens that brings certain aspects of reality into sharper focus (emphasizing a particular way to understand an issue).” Enman (2007) continues to explain framing as encouraging the audience to think and feel a certain way after consuming media.

Overall the researchers found that the media frames FASD in two ways: frames of sympathy and frames of shame. The sympathy frames were found to be extended to individuals with FASD as well as to the mothers of these individuals or children. Conversely, frames that communicated shame were directed towards the mothers of these individuals or children.

Continually, Equiagaray et al. (2016) found that the sympathy frames were more likely to be directed towards the children with FASD. As well, children with FASD are often described as”frail” that leads to disenfranchisement. Shaming media frames were directed toward the mothers of children with FASD. The media would often refer to the mothers as “irresponsible” and “villainous.” Equiagaray et al. (2016) suggests that shaming media framing shuts down support and further isolates mothers and their families. This is detrimental to the potential access individuals and their families have to services and interventions that can benefit them.

The researchers also reported that  health care professionals and government policy makers were shamed for not being informed enough to make safe recommendations, or having confusing messages about alcohol consumption during pregnancy and lastly for the lack of effective policy to reduce the rates of FASD (Equiagaray et al. 2016). Although it is easy to focus blame on scapegoats such as the mothers, health care system and government it is important to look at the issues surrounding FASD with a holistic perspective. This is not to discount responsibility or minimize the effect that these parties have, but to establish an inclusive and non-judgmental dialogue on the impact that FASD has on the community. As well as to support those effected by FASD through awareness and intervention.

The solution that the researchers presented is simple: promote media frame works that challenge the shaming discourse around FASD. In turn, the public, government and health care services can work towards the non-judgmental support for those who need it.

The study is titled: Sympathy, shame, and few solutions: News media portrayals of fetal alcohol spectrum disorders. Please use this link to access the full article.

 

 

April 16th, 2016 The Current on CBC radio presented an episode on Bill C-235 proposed by Liberal MP Larry Bagnell introduced in January of this year. Bill C-235 targets those affected by fetal alcohol spectrum disorder (FASD) that are seemingly caught in the “revolving door” of the criminal justice system in Canada. Offenders involved in the Canadian criminal justice system are often a forgotten demographic of individuals with limited access to effective FASD specific interventions and community transitional programs. 

For more information on Bill C-235 or to listen to the full CBC radio program on this topic please click the above links.

In order to better support those affected by FASD in the Canadian criminal justice system Bill C-235 is proposing the following changes in legislation:

  • Access to assessments for individuals suspected of having FASD

  • Allowing assessment to inform sentencing of these offenders

  • Reintegration plan for community transitions

The CBC radio episode features an interview with Russ Hilsher who has FASD and is a spokesperson for Initiatives for Just communities and discusses his personal experience in the Canadian criminal justice system and the need for programs and services for individuals with FASD involved in this system. As well as discussions on the proposed Bill C-235  with Jonathan Rudin, program director of Aboriginal Legal services and chair of FASD Justice Committee and Dan Brodsky, criminal defense lawyer with the Association in the Defense of the Wrongly Convicted

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Members of the iNAT (creators of this blog), and collaborators recently published new research about caregiver needs and stress for those caring for individuals with FASD.

Based on an online survey, the research team found that caregivers reported many needs and concerns and high levels of stress, and that those caring for adolescents and adults with FASD tended to report more concerns and needs than those caring for children. Also, those with lower income reported higher levels of stress and more needs and concerns.

Thank you to anyone who came across the survey on this blog and took the time to fill it out. The link below provides free access to the paper until May 26, 2016, where you can read about the study and findings in detail.

Click here to read the paper.

The findings of this paper highlight the importance of adequate supports for individuals with FASD and their families. To learn more about FASD and possible ways to get help, visit the iNAT’s KnowFASD page. check out the wiki feature for support resources on many of the issues surrounding FASD, including caregiver needs.

NDN FASD and Stigma
The FASD Research Program at NeuroDevNet has just completed another new video: “FASD & Stigma: Damaged Angels Can Fly” featuring Colette Philcox and her mother, Bonnie Buxton.

 

NDN Video

NeuroDevNet, a research network dedicated to understanding brain development and to helping children and their families overcome the challenges of neurodevelopmental disorders, has recently created a video on the stigma surrounding drinking during pregnancy, exploring some of the reasons a woman may drink while pregnant.

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Conference agenda and registration now available for the 7th National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder (FASD)!

Research on FASD tends to focus on childhood, with a relatively small body of literature on the effects of FASD later in life. Given that FASD is a lifelong condition, it is essential that research investigate the effects of these diagnoses throughout the lifespan- including adolescence and adulthood- which is exactly what this conference focuses on! You can even check out a presentation by iNAT members (creators of this blog) about findings from our research on caregiver needs, partnered with the University of Alberta (the presentation is titled “Supporting Adolescents and Adults with FASD: The Impact on Caregivers”).

The conference will take place April 6-9, 2016 in Vancouver, BC.

For more information, check out the links below:

Conference Website

Conference Brochure outlining program/presentations and general information

Register

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Research participation opportunity for families in Edmonton with children with FASD  or prenatal alcohol exposure age 5-13. Typically developing children are also invited to participate!

The study involves a memory training program aimed at improving your child’s working memory. The program can be completed on your own computer at home. Please click on the image above to learn more.

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