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CG paper

 

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.

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news

The latest edition of the iNAT FASD Intervention Newsletter is now available!

This season’s newsletter includes a spotlight on an Ontario school with an FASD-specific program, information about Dr. Michelle Stewart, (CanFASD’s Strategic Lead for Justice Interventions), and a sneak peak of findings from our research examining caregiver needs and stress.

You can read a copy of the newsletter here and subscribe to receive future editions.

KnowFASD

After what seems like far too long, KnowFASD is back in operation! To those of you who use the site regularly and have been waiting for its return, thank you for your patience.

If you have never visited the site, please feel free to drop by and check it out! Take a browse through the interactive home page and learn more/find help on the site’s wiki.

Our goal with KnowFASD is to provide a comprehensive site where viewers can learn about the neurobehavioural deficits associated with FASD throughout the lifespan and link to intervention options.

The main homepage of the website is an interactive interface where viewers can scroll through the lifespan of individuals with FASD, with neurobehavioural issues at each developmental stage presented as they may appear in day-to-day life. By clicking on a neurobehavioural issue, viewers are directed to a “wiki” (which works in a similar fashion to Wikipedia) housing information from current research on the neurobehavioural issue at hand. Each wiki page discusses a specific neurobehavioural issue: how it presents, potential causes, and potential consequences. At the bottom of each page, a link is provided to topic-specific intervention options.

Please feel free to visit the site, pass it along, and give us your feedback or suggestions. Check back often as we continue to upload information, links, and resources.

Visit KnowFASD

 

A quick reminder that the “Strongest Families” research study is still recruiting participants.

If you have a child with FASD age 4-12, live in Canada, and would like help with your child’s challenging behaviours, you may be eligible to participate!

Check out the You Tube video above for more information or click here to sign up.

 

Previous posts on this research program:

Strongest Families Research Program- Now Recruiting Participants

Strongest Families Research Program

Recently, we posted a survey for caregivers of children with FASD, asking about caregiver stresses and needs. Initially, the survey was only open to caregivers of children under 18. We have received emails from several caregivers of adults with FASD who would like to fill out the survey and, as such, we have extended the age limit!

Caregivers of adults with FASD (and children/youth too!), please feel free to click the link below and fill out the survey!

Survey information:

The University of Alberta and CanFASD need your help! We are conducting a short online survey in order to learn more about the needs and stresses associated with caring for an individual with FASD. It only takes 15-20 minutes and your responses are anonymous.

While existing research shows that caregivers of children with FASD experience a significant amount of stress, there is little published research investigating the specific needs of those caring for individuals with FASD, whether these needs are being met, and the relationship between caregiver needs and stress.

Through research such as this, we have the opportunity to influence practice and policy in order to improve services for caregivers and their children. Please take a moment to read the poster above for more information or go directly to the survey by clicking the link below.

Yes! I would like to complete the survey and contribute to FASD research!

 

Thank you!

Are you a caregiver of a child/youth with FASD living in Canada? 

If so, the University of Alberta and CanFASD need your help! We are conducting a short online survey in order to learn more about the needs and stresses associated with caring for a child/youth with FASD. It only takes 15-20 minutes and your responses are anonymous.

While existing research shows that caregivers of children with FASD experience a significant amount of stress, there is little published research investigating the specific needs of those caring for children with FASD, whether these needs are being met, and the relationship between caregiver needs and stress.

Through research such as this, we have the opportunity to influence practice and policy in order to improve services for caregivers and their children. Please take a moment to read the poster above for more information or go directly to the survey by clicking the link below.

Yes! I would like to complete the survey and contribute to FASD research!

 

Thank you!

Some of you may have read our post “Strongest Families Research Program” in May about an upcoming research study designed to help parents of children with FASD to deal with their child’s challenging behaviours. We promised to let you know when the study began recruiting participants, and that time is now! Parents, keep on reading to get help with parenting your child with FASD.

Sue Kobus, recruitment coordinator of the study, writes:

“Strongest Families has developed programs to help parents with their children’s behaviour problems. Strongest Families Programs are done on-line with weekly telephone calls from a personal Coach. The Coach provides support to families, answers questions and guides parents as they learn skills. Families do not have to travel to a centre to get help.”

Researchers are currently looking for families who have children aged 4-12 years, living in Canada, and have a FASD diagnosis to take part in the study.

To learn more or sign up, visit the website  (the website is being finalized. Please check back in a couple of days if it is not working) or contact the team at: FASDstdy@queensu.ca  1-877-341-8309, Menu #4

You can also click on the pictures below to learn more about the study and find sign up information.

Poster

Poster

Brochure P. 1

Brochure P.1

Brochure P. 2

Brochure P.2

 

strongest families

Strongest Families– Fetal Alcohol Spectrum Disorder is a research program developed by Nova Scotia’s Centre for Research in Family Health at the IWK Health Centre in conjunction with the FASD Research Program at Queen’s University. The program was devised in response to the need for services and supports for those with FASD as well as empirical data to influence the delivery of those services. Funding for the program has come from CIHR’s Partnerships for Health Services Improvement, NeuroDevNet, and the Public Health Agency of Canada.

The program uses input from key stakeholders to determine the need for services and supports and develop and evaluate a distance training program for parents/caregivers. The efficacy and feasibility of the intervention, as well as program outcomes, will be examined in a randomized control trial.

This research is interwoven with elements of knowledge translation, as researchers and knowledge users (i.e. families, health professionals, etc.) have been involved heavily in the process from the beginning.

The Strongest Families program has shown success in populations with neurodevelopmental disorders, and will be adapted for families with FASD. One advantageous aspect of the program is that it eliminates the need for families to travel to an intervention site on a regular basis, allowing participants to complete the intervention in their own homes and allowing the researchers to recruit participants from across the country.

The study team is currently building its recruitment network. If your clinic or organization is interested in supporting this trial by making study information available through your offices (posters/brochures) or websites, please contact Sue Kobus, Recruitment Coordinator at Queen’s University or Karen Turner, Study Coordinator at IWK Health Centre, Halifax, NS.

Recruitment will begin late spring 2014. Caregivers will be able to apply online.

Contact Information:

Dr. Patrick McGrath: patrick.mcgrath@iwk.nshealth.ca

Dr. James Reynolds: jnr@queensu.ca

Karen Turner: karen.turner@iwk.nshealth.ca

Toll-free: 1-877-341-8309 (menu item 4, then 1)

Sue Kobus: smk1@queensu.ca

Toll Free: 1-877-341-8309 (menu item 4, then 2)
Learn More

 

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