The Importance of Parental Involvement in Research (and beyond)

I have recently been provided the opportunity to participate in the Family Engagement in Research (FER) Program, offered through McMaster University, in partnership with CanChild and Kids Brain Health Network:

“The Family Engagement in Research Certificate of Completion Program is for researchers (graduate students, research coordinators, investigators, clinician-researchers etc.) and families (parents, siblings, grandparents) who have an interest in child neurodevelopmental research. This training program is unique in that it brings researchers and families together in a fully integrated online course.” (source:


As a parent-partner, I have the chance to work with clinical and academic researchers, sharing our thoughts and experiences to create a better environment for involving families of kids with neurodevelopmental disabilities (like ADHD), in the research.

My assignment this week was to read a chapter of a dissertation by Dr Mattijs Alsem (MW Alsem) called “Parental Involvement: a critical reflection” (at page 199 of the Open Access Version Full Text), examining research by KM van Meeteren and M Klem and, during my reading, came across so many informative tidbits of information that I wanted to share with you. These are applicable, not only to parents who have a child with a neurodevelopmental disability, but to families who have a child or family members with any type of concern, including mental health, that requires attention.
I strongly believe in the “nothing about us without us” mantra, and feel that all research must involve the voices of lived experience when conducting research and making decisions.

I’ll share some of the most notable quotes that I have read from the paper. These have, as a parent with my own disability that deeply affects my mental health, reiterated the confidence and empowerment that involves speaking up and speaking out to oversee and make decisions for, both, my own care and the care of my child. I hope that it does the same for you.

Professionals shouldn’t strive for the highest level of participation from parents but should enable and empower them to make an informed choice as to what level is right for them.

Often, the idea of participation can be scary for parents, especially with our societal notions of “doctor knows best” which isn’t always true. Doctors misdiagnose or show an incredible amount of apathy, often not even providing the standard of care due to their own bias and ignorance. This is why family involvement is crucial. Parents know their child best and it is important to take a doctor’s opinion under serious consideration, but speaking up to collaborate on a solution, or even seeking out a second or third opinion with a healthcare provider that will listen to you, is empowering and healthy for your family.

As a result, medical guidelines, protocols and objective knowledge are of limited use. A paediatric physician can, for example, point out to parents that couples raising a child with a disability have a higher chance to divorce, but this objective information does not inform parents how they can organize their lives.
Experience-based knowledge can fill this gap.
Unlike ‘objective information’, experience-based knowledge from peers combines ‘facts’ with emotions and recognition.
This emphasizes for us the idea that dealing with one’s child’s disability and feeling empowered is not only a practical ‘objective’ but it also involves a lot more, like the knowledge of not being the only one with particular questions and experiences, and being able to share feelings, emotions and experiences with one another.

I really loved reading this because it solidifies the purpose of
Experience-based knowledge is usually more valuable than that standard black-and-white text of a book that has taken a sample of individuals and reported their findings. As truthful as the subject(s) is/are trying to be, there’s always a feeling of pressure when it comes to answering questions, especially those that are sensitive to yourself or toward your child with a disability.
The concept of #RelatableSolidarity comes shining through in this quote, and emphasizes the need for us, as families, to share our stories – emotion and all – in a safe space to, firstly, inform and support each other and, secondly, to assist researchers in being able to provide us and our children with what we actually need.

The importance and urgency of parent involvement in research is paramount. In many situations, the high hereditability aspects of the disability, such as ADHD, gives parents very real insight and experiential knowledge on what it’s like to have ADHD during childhood, and those are insights that can be shared with researchers to help the future generations. The faster that the information is delivered, the faster we can stop the mental health concerns that come along with managing disabilities. The same applies to mental health concerns, including mental illness, such as anxiety and depression, which are also shown to be genetic/hereditary when experienced in younger children.

So keep speaking, keep writing and keep sharing. Your voice matters, whether it’s loud and boisterous or quiet and confident – what you say can help.



Parental Mental