Tuesday, 6 October 2015


Can scientific research offer practical help to caregivers and our loved ones?  You bet it can.  I have the privilege of sitting on the board of NeuroDevNet, or NDN – a member of the Canadian Networks of Centres of Excellence supporting research in the area of neurodevelopmental disability. 

The ‘network’ part of NDN means that knowledge developed gets shared to other academic areas and also to families.  There are two great benefits of research I’d like to share with you today – participation and information.


The next time you speak with your loved one’s specialist physician, ask if there are any research projects that you could join.  Enquire about what kind of benefits you might gain from participating and ask about obligations and risks, too.  Sometimes, research subjects are paid for participating. But an even more important benefit of research participation is that relationships with key physicians can be deepened; clinicians who know you and your loved one better will give you great access and their undivided attention.  Where long wait lists exist for specialized treatment, sometimes a way to ‘jump the queue’ is to volunteer to participate in a research study.  An added bonus is that often, research participants are given a cash stipend for their efforts.


Knowledge is power.  The more you know about your loved one’s health condition, the more you can control your family wellbeing and your daily life.  Google is a caregiver’s best friend, but so is your local hospital research team or university research institute.  The trend today is toward ‘non-categorical’ research – a term which means simply that effective strategies in the treatment of particular diagnoses such as autism can be shared and applied to others with similar symptoms but different diagnoses.  Ask your treatment team or even your GP what research might be going on locally that could benefit your family. 

NeuroDevNet funds lots of interesting research projects that will have practical and positive impact on the lives of children and families living with disability.  Here are two examples:

·        A team of psychologists, nurses and physician - many of them parents themselves - developed the Better Nights, Better Days sleep treatment program and will be measuring its success.
·       Better Nights, Better Days is a distance-treatment program, delivered online on a mobile-friendly website. It's based on behavioural principles - increasing and encouraging positive behaviours that will help children learn to settle down more quickly at bedtime and achieve a better quality of sleep throughout the night. As a child's sleep quality improves, their entire quality of life improves around the clock, including behaviour, mood, and school performance.
Strongest Families Institute is a not-for-profit corporation providing evidence-based services to children and families seeking help for mental health and other issues impacting health and well-being. We provide timely care to families by teaching skills through our unique distance coaching approach – supporting families over the phone and Internet in the comfort and privacy of their own home. Strongest Families provides family-centered care that is customized to their needs.

Parenting the Active Child – Behaviour Difficulties Program (3-12 years of age):This program helps parents learn to deal with common childhood behaviour problems such as temper outbursts, not listening, verbal and physical aggression and difficulties paying attention. The program provides parents with a manual, DVD, behaviour chart for home, daily report card for the school and weekly telephone support from a coach. This program is now available in French thanks to the Nova Scotia Department of Health and Wellness.VIP_BiLingBlue_4Col_Bil

Chase Worries Away – Anxiety Program (6-17 years of age):
This program educates parents and children about anxiety and guides them as they learn relaxation skills and how to face worry in real life. The program typically deals with difficulties separating from loved ones, worry about performance, and specific fears. This program provides parents and children with manuals, a DVD, relaxation audio clips, daily worry diary and weekly telephone support from a coach. *Coming soon* This program will be available in French thanks to the Graham Boeckh Foundation.

Dry Nights Ahead – Nighttime Bedwetting (5-12 years of age) *Dependent on funding:
This program helps children overcome bedwetting with the use of a urine alarm, reward system, and weekly telephone support from a coach.
Chase Pain Away – Recurrent Headache/Abdominal Pain (9-16 years of age) *Dependent on funding:
This program focuses on teaching stress management, avoidance of triggers, dietary modifications, appropriate use of
over-the-counter medication, and with weekly telephone support from a coach.
CHECK OUT WHAT STRONGEST FAMILIES SUPPORT LOOKS LIKE! (Now in research development to scale across Canada and the wider world.)

Research benefits caregivers and our loved ones.  That is for sure - we don't need any lab to prove it. 

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