Posted by Embedded into the identity of parenting a child with any sort of disability diagnosis is an ever constant need to advocate for their right to access or inclusion. It takes many families a considerable amount of time to finely craft a successful support village, and for many families support always remains a work in progress or is completely nonexistent.
All that was further affected this year, when the world was told to “stay home”. Families out of concern for their children’s safety due to medical complexity, lost their support village. They had to lay off nursing staff or community aids due to their attendance in other family homes. The loss of familiar faces is a stress for many children who find self-regulation in schedule and consistency.
Educators who invested endless hours with children with a variety of needs had to sacrifice the integral learning tool of interpersonal connection and were forced to become creative in their methods via online learning. Some families were met with silence and no consultation during the scrambled transition to online learning. Only to find out that those staff who would have made the transition successful were either deemed “non-essential” and laid off or redeployed by their respective colleges for COVID-19 testing. The impact on Canadian families has created a long list of stresses. What were previously considered cracks in the system, now feel cavernous by comparison.
The advancement in childhood disability policy in Canada has been hampered greatly by a lack of statistical data for children ages fifteen and under. According to the 2017 UN Concluding Observations on the Initial Report of Canada, “… the Committee notes with concern that the Government of Canada has not collected data on children with disabilities since 2006.” While servicing this data gap has been acknowledged and is being worked on, we have an incredible opportunity for partnership here in the waiting.
As a recent wave of COVID-19 related grant proposals got submitted to the CIHR (Canadian Institutes of Health Research), there may be opportunity to capture important points of information about families that may not have existed previously. What we do here both as families and as researchers is important.
Researchers: Parents are incredibly low in the bandwidth department. Please be patient, consider your steps in recruitment and information collection methodologies. Please respect and consider the physical toll the loss of a support village can have on the human body. You are not alone in your stresses on attempting to innovate on public engagement in this respect. Consider speaking to colleagues or connect with engagement strategists such as myself, or through your provincial SPOR networks. CanCOVID.ca is an excellent example of fast-paced networking in real-time on pandemic research. We need to consider ways to come together as a unified knowledge network so that your resulting work can be disseminated by advocates with less barriers.
Parents…
It’s important here to understand that you do not have to participate in all of the things. This time is about ensuring that you stay as healthy as you can be. If you can contribute to one thing, that’s power and impact where there previously wasn’t any. That is what it means to make a dent in the universe.
Some things you can consider doing…
Sign up for studies as a participant, be it surveys or interviews. One pro-tip: hold onto the email of the research coordinator or principle investigator and ask if they could contact you with information on outcomes from the study. Not all researchers are keen to do so, but it’s worth asking. Learning of outcomes has benefits in helping you feel like you made an impact and frankly giving you that feeling needs to be common practice. There is also benefit in learning outcomes: helping you to elevate your messages to policy makers with applicable data.
Consider opportunities to become a research partner in projects. Did you know that when you as someone with lived experience functions as a research partner on projects, you actually create more applicable research? Lived experience counts for a lot when you talk about things like framing research questions, or examining data. You don’t have to come into this concept alone either. If you wish to learn along the way, Canada hosts a number of programs that provide training for patient-oriented research. Many programs are fully funded and no cost to you for training.
PaCER is one example of a health-driven program that helps you to learn about being a research partner. (https://pacerinnovates.ca/)
The Family Engagement in Research Course through CanChild, Kids Brain Health Network and McMaster University Centre for Continuing Education teaches more from a lens of childhood disability research. (https://www.canchild.ca/en/research-in-practice/current-studies/family-engagement-in-research-course)
Participating in research opportunities that are either available now or may be in the near future once many projects are given the funding green light provides families with a new opportunity. Opportunity in the form of new connections that help to validate through data some of the challenges you’ve been experiencing as a parent right now. This new community identity of collaboration is rife with potential. Should us parents decide to seize the opportunity and begin to work together not just for the science but for the benefit of our kids.
Rachel Martens
From Alberta, Rachel is an advocate for a life course perspective in disability policy. She works as an engagement officer in childhood disability research.