Strongest Families study recruiting for FASD study of behavioural coaching and resources

July 25, 2014

NeuroDevNet FASD researchers are seeking families facing behavioural challenges in their children aged 4-12 who have an diagnosis of FASD.

Families living in Canada are eligible to enroll in the study, a joint undertaking of the IWK Centre in Halifax, Nova Scotia, and Queen's University in Kingston, Ontario.

"Fifteen children have enrolled to date," says Recruitment Coordinator Sue Kobus, a colleague of Dr. James Reynolds, who is co-lead of NeuroDevNet's FASD Research Group. "Our goal is to recruit 200 FASD families," she added.

The Strongest Families program, which involves online sessions and resource materials, supported by weekly coaching phone calls has been used to support families in British Columbia and Nova Scotia. "This study," said Kobus, "is an adaptation of original approaches for other neurodisabilities to behavioural challenges specific to families raising children with FASD."

Customization of the course material was achieved thorugh phone interviews with clinicians specializing in FASD, and families, she added. "We created this program based on the needs they articulated."

All participants in the study will receive some form of support, but only those enrolled in the intervention arm will receive the full program of coaching and the capacity to post questions to FASD researchers and experts online. Families randomized to the non-intervention arm of the study will initially receive access to a suite of print resources selected by the researchers. Eleven months from the start of the study, the non-intervention group will be given access to the online support program, which involves curriculm modules, but not the coaching, Kobus added.

Coaches, she said, are not professionals but have been trained through the strongest families program. If participants in the study are facing a challenging situation at home and need immediate help, community-based organizations can offer real-time support in the event of a crisis.

For more information about the Strongest Families study, visit the study website at: http://mystudies.ca/studies/fasd
Contact the Queen's University based research team at: FASDstdy&h=queensu.ca or 1-877-341-8309, Menu #4, press #2.  

Study flyer