Personalized Parenting Support for Families of

Children with Neurodevelopmental Disabilities

Children with brain-based developmental disorders often face emotional and behavioural difficulties. These challenges can negatively impact their quality of life and the quality of life of their families. Drs. Patrick McGrath (Centre for Research in Family Health) and Lucyna Lach (McGill University) as part of the CHILD-BRIGHT Network are testing an online parenting program designed to improve the lives of children with neurodevelopmental disabilities and their families. Development of the program has involved parents as expert advisors in all phases of the project, ensuring program content addresses the needs of families of children with neurodevelopmental disabilities and challenging behaviours.

The Program

The Strongest Families Neurodevelopmental Program, “Parents Empowering Neurodiverse Kids”, has been developed to deliver evidence-based care to families in the comfort of their own homes. Our program includes 11 skill-based education sessions, weekly telephone support from trained coaches, video/audio skill demonstrations, and a Parent-to-Parent online support group.

Who can take part?

Inclusion

Parents/caregivers must...

  • Have a child between 3-14 years diagnosed with a neurodevelopmental disorder, for example:

                • Autism Spectrum Disorder

                • Cerebral Palsy

                • Epilepsy

                • Global Developmental Delay

                • Down Syndrome,

                • Fetal Alcohol Spectrum Disorder (FASD)

                • severe learning disability

OR any other diagnosis that influences how your child gets around, communicates their ideas, processes what they hear, or remembers things.

**PLEASE NOTE: Attention Deficit Hyperactivity Disorder (ADHD) is included but CANNOT be the only diagnosis (i.e. the child must also have another neurodevelopmental diagnosis to be eligible)**

  • AND the child has been experiencing behavioural problems (disruptive behaviours) that interfere with the activities of daily living for at least 6 months

  • Have been the primary caregiver for a minimum of 6 months before starting the study

  • Have a reasonable expectation of being be the primary caregiver for at least 10 months after study starts

  • Read, write, and understand English

  • Have access to a telephone

  • Have regular access to a tablet, smartphone or computer connected to high speed Internet

  • Live in Canada

  • Be able to commit to the requirements of taking part in the study (e.g. available to attend weekly coaching calls, having a Facebook account to access Parent-to-Parent support group)


Exclusion

Any of the following will exclude individuals from taking part in the study

  • Child is NOT able to understand everyday language and instructions or communicate needs (for example, the child MUST be able to convey their need for food, drink or comfort AND be able to follow (at minimum) simple one-step instructions

  • Child regularly engages in moderate to severe self-injurious behaviours

  • Parent or child has ongoing struggles with symptoms of psychosis, schizophrenia, bipolar disorder or major depression (i.e. the symptoms are not well managed)

  • Child is at imminent risk of serious harm to self or others (i.e. requiring hospitalization or medical attention)

  • Child has attempted suicide in the past 6 months

  • Parent has taken part in Triple P, COPE, Incredible Years, Strongest Families or another parent training program within 6 months of starting the study (can apply to study after 6 months)

Parenting Program Session Summaries

Introduction

Complete the program set up.

Learn about neurodevelopmental disabilities:

  • What is a Neurodisability?

  • What the Brain Looks Like

  • Parenting at Different Stages

  • Parenting Children with Neurodisabilities

Tools and Strategies.

Sessions 1-10

Sessions 1-10 provide positive parenting techniques along with video and audio clip examples, exercises and Tryout Pages.

Session topics:

1. Noticing good behaviour

2. Spreading attention around to other family members

3. Ignoring whining and complaining

4. Preparing your child for change

5. Planning ahead inside the home using the SOLVER method

6. Strengthening your child’s abilities using a rewards system

7. Planning ahead for events outside the home

8. Working with caregivers at daycare or school

9. Creating a “Calm Down Plan” using the SOLVER method

10. Problem solving

Session 11

The final session focuses on how to integrate and continue using the skills that parents have learned throughout the program.

Frequently Asked Questions

Is the goal of the program or the study to “fix” my child?

The Strongest Families Program (Parents Empowering Neurodiverse Kids) recognizes the value in neurodiversity and does not aim to “fix” or “cure” children. The goal of the program is to provide support and skills to enable parents to help their children manage the types of behaviours that may be making activities of daily living more challenging for children and their families.

What kinds of “challenging behaviours” are required to take part in the study?

The Strongest Families Program is designed to help parents and children manage behaviours that are having a negative impact on the activities of daily life such as problems with self-regulation (meltdowns), trouble transitioning to new or unexpected situations, challenges with getting along with others, or difficulty controlling negative emotions, for example.

Is the Strongest Families Program based on ABA (Applied Behaviour Analysis)?

The Strongest Families Program is based on the principles of positive parenting. The strategies are meant to assist parents and children learn positive ways to manage negative behaviours and emotions.

My child has challenging behaviours. Why didn’t I get accepted into the study?

The inclusion/exclusion criteria for taking part in studies are chosen with great care to ensure that the results are scientifically valid and that participants are receiving the care that is best designed to address their concerns. It may be that another study is more suited to your needs.

To find a list of possible studies that are regularly updated, please visit: clinicaltrials.gov or speak to your healthcare or service provider.

If you do not get into the study and would like to know why, please contact the study team at sf.neuro.study@iwk.nshealth.ca or phone us toll free at 1-877-341-8309 Ext. 1.

Why are children with moderate to severe self-harming behaviours excluded from the study?

It is important that study participants receive the kind of care that is most expected to provide benefit to their families. The content of the program is not designed to address moderate-severe self-harming behaviours in children.

ADHD is a neurodevelopmental disability, why doesn’t this diagnosis qualify our family for the study?

The good news is that is because we’ve already completed a study in this area for ADHD. You can find out more about the program by visiting the Strongest Families Institute website.

The Strongest Families Parenting Program for typically developing children (based on the same skills as the neurodevelopmental program) was tested in a randomized controlled trial and was shown to be effective in reducing challenging behaviours in children with ADHD.

The current study is designed to determine whether the adapted program is effective for children with other neurodevelopmental disabilities, outside of ADHD. Having a diagnosis of ADHD is not an exclusion from the study, but your child must also have another neurodevelopmental diagnosis that has not already been tested in a study in order to take part.

Who has been involved in development of the program materials and study design?

Meaningful involvement of patients and families in research is an important part of research at the Centre for Research in Family Health. That’s why we work closely with a group of parents of neurodiverse children (Parent Advisory Committee) who are valuable members of the research team. Researchers and parents have worked together to ensure the program is relevant to parents of children with neurodevelopmental disabilities and challenging behaviours. The Parent Advisory Committee was also involved in all aspects of study design, including choosing study outcomes and measures.

Parent Advisory Committee

Using Patient-Oriented Research (POR) strategies, the creation of the Strongest Families Neurodevelopmental Program has involved families as expert advisors in all phases of the project. Our Parent Advisory Committee of 14 parents of children with neurodevelopmental disabilities have taken an active role in the research via online meetings, surveys, face-to-face meetings and ongoing discussions. Unique perspectives from parents have helped shape the Strongest Families Neurodevelopmental program into a resource that will be relevant and helpful to families like their own.

Who are Parent Advisors?

Parent Advisors are real parents. No other experience is necessary. We want to involve parents who live in different places across the country and from all walks of life.

What do Parent Advisors Do?

Our advisors provide feedback, opinions and recommendations on what the online program should look like, help us to connect with families and/or health care providers who are interested in testing the program and to help spread the word about the project.

Find out more about Patient Oriented Research here.

“Accessibility and barriers are particularly pronounced for ‘invisible’ disabilities and delays – particularly for families without knowledge, language, or resources. Calling your program ‘Strongest Families’ is so suiting!”

-Kari Welsh, Parent Advisor

“Shelley has 20 years of experience as a counsellor and I’m a Special Education teacher. We have three children, all with Fetal Alcohol Spectrum Disorder, (FASD), Mild Intellectual Disability (MID) and Attention Deficit Hyperactivity Disorder (ADHD). We understand the challenges of finding support in a rural setting, and the importance of being strong advocate voices for those in need.”

-Rob and Shelley More, Parent Advisors

Why participate in research?

In 2015, we met with 80 stakeholders in person and polled over 900 patients and families touched by brain-based disabilities. We wanted to hear their priorities, concerns, and learn more about what was important to them. Based on their input, CHILD-BRIGHT, with its 3 themes and 12 research projects, was born.”

— Dr. Annette Majnemer, CHILD-BRIGHT Network Director

At CHILD-BRIGHT, 'patients' have been at the centre of our work since before our network was even established. We understand that patients and families are experts on their health experiences and needs and we look to them to provide us with insightful input that will influence our priorities, research study design, the outcome measures we use, as well as the interpretation and use of our findings.

As a network working under Canada's Strategy for Patient-Oriented Research, we aim to engage all people touched by brain-based developmental disabilities, especially patients and families, as meaningfully as possible in all aspects of our work.

WHY DO PATIENT-ORIENTED RESEARCH?

  • Because it's important to involve people who have first-hand experience with the disability or disease

  • Because all parties should be represented fairly and equally

  • Because patients and families will often identify research priorities and/or outcomes of importance that are different from those identified by researchers

  • Because patients and families may identify outcomes of importance that are different from those identified by researchers, and also help choose measures well suited to those outcomes

  • Because we want to improve the quality of the research

  • Because we aim to increase patient support for research

WHAT ARE THE BENEFITS OF GETTING INVOLVED FOR PATIENTS AND FAMILIES?

  • Patients and parents become competent members of the research team, influencing all phases of the project as experts.

  • Patient and parents can ensure that the research is highly relevant and more likely to be taken up and used to improve health care.

  • All involved in the research, including patients and families, will have a strong shared sense of purpose, to improve the lives of children with brain-based disabilities and the lives of their families.

Ready to take part in the Parents Empowering Neurodiverse Kids study?


Check out this article by project team members

Dr. Lucyna Lach and Donna Thompson

Interview with Parent Advisor, Sharon McCarry!