Why I Engage

Have you ever experienced a time when you were so afraid you thought your heart might explode, causing you to collapse into a useless heap of flesh and bones? 

That was me 16 years ago. My doctor said I was pregnant with a healthy baby girl, but after 20 hrs of gruelling labour & delivery, she was whisked away to a strange and unearthly place called the neonatal intensive care unit (or as 'insiders' call it, the NICU). 

The NICU is simultaneously the best & the worst place I have ever encountered:

• My baby needed urgent life-saving surgery, but the hospital couldn't find a doctor to do the procedure (it was Thanksgiving).

• The surgery happened and the health team was annoyed because I didn't meet the surgeons. (They also forgot to mention when the surgery was & the existence of the surgery wait room) 

• I shuttled back & forth between the adult hospital (where the breast pumps lived) and SickKids for 4 days before I discovered: there are breast pumps at SickKids!

• After 2 days I discovered: there's food at SickKids! And Starbucks! And the people in the line were really nice and insisted I go ahead of them. (Later, I realized this was because I was leaking breast milk through my light blue shirt, prominently displaying dark splotches across my chest).

• I slept on the floor of the NICU 'lobby' so I could attend 17 health consults in 9 days. I was a vision of loveliness: unwashed, outfitted with snazzy postpartum diapers and breast pads, and in a trance from pumping milk every 3hrs at night.

• On day 9, I received 'training' on my baby's life-sustaining health technology. We were given the boot on day 10.

My baby survived the NICU, but I was left feeling angry and confused. Could I dare complain about a place with superstar nurses working 24/7 to keep my child alive after doctors had saved her life?

I didn't say anything, but captured my thoughts in a secret document called "Why the NICU Sucks So Bad."  

Years later, I encountered a man named Dr. Jonathan Hellmann who happened to be the Director of the SickKids NICU at the time. I shared stories from my document and he went to bat, paving the way for meaningful change. 

Today, the NICU experience at SickKids is very different:

• There's a parent liaison whose actual job is facilitating communication between parents & staff. 

• They use the Family Integrated Care Model to support learning and care.

• Parents can access showers, sleeper chairs and snacks in the Ronald McDonald Family Room.

I'm certain Dr. Hellman would have championed improvements even if we hadn't met, but perhaps my stories provided a deeper understanding of why the work should always involve families.

They say 'it takes a village to raise a child', but when the smallest, sickest & most fragile babies are born, you need healthcare practitioners, administrators and researchers to partner with families to give these tiny humans the best possible chance to live a meaningful life.

Children are not Mini Adults

My two teens have participated both as research participants and research partners over the last year. They often comment that they are more confused after attending project meetings, but don't feel like they can admit it to anyone on the research team everyone worked so hard to put the meeting together and they don't want to be rude.

I recently came across a call to submit a chapter for a book that would serve as an essential resource on participatory action research with children. It asked for a 300-500 word abstract excluding references and key words within a 2 week deadline.  It then explained that the deadline for the 5000-8000 word chapter draft would be 4 months later and that manuscripts written by child researchers are highly encouraged! 

I don't know if it's just me, but this ask seems crazy and completely unrealistic for a child (or for anyone who isn't already a full fledged researcher who happens to have oodles of time to write an abstract followed by a whole book chapter). If this is the process to produce the book, will the end result really be useful resource on how to engage children in research?  

Another project my kids recently participated in involved reviewing a 55 page digital health tool, taking a survey about the tool and then attending a zoom meeting to answer more questions. Both of my kids could see how much work was put into the project, but felt it wasn't their place to tell the researchers that they had lost interest after the third page. 

When it came time to discuss over zoom 4 weeks later, the researchers starting asking all these questions and my son had to interrupt them to ask what tool they were even talking about. My daughter begged them to bring up the tool to jog her memory.

If it were me, I would not be able to recall what was written on a 55 page health tool that I read a month ago either. It wouldn't matter if it was written in plain language and had sparkles and pictures on every page. It's 55 pages! NO ONE WILL REMEMBER!!

That said, both my kids DO remember Tanara Mallory's TikTok video from over a year ago

Words of Advice to Scientists

If you want someone to remember a key message it needs to be concise and memorable, so put on your marketing hats and repeat this mantra:

It won't go down easy if it ain't cheesy!

Working Caregiver Iceberg

 

As a working caregiver, I have had my fair share of challenges when it comes to balancing 'work life' and 'home life.'  This started very early on for me when I was on mat leave. Before I could even think about going back to work, I first needed to solve the problem of finding childcare for my technology dependent, medically complex child.  During my mat leave, I worked furiously with our home care nurse and the childcare system to train early childhood educators on my daughters needs and build an integrated program. The success of this program led to the childcare winning an award for excellence in disability inclusion and allowed them to expand their programming to support other children with disabilities. It also helped to improve paediatric nursing education within the home care system to support other children with health technology needs. 

What I didn't realize at the time, was that I was participating in true engagement partnership and co-design. (This wasn't a thing 15 years ago!)

Despite these successes and all the skills I gained from this experience, my workplace did not see the value in my skills and was annoyed when I requested flexibility to attend ongoing healthcare appointments. Accommodations in the workplace are typically set up as temporary measures for temporary health issues and don't really work for complex or chronic health conditions.

The other day I saw this image about mat leave -what people see on the surface and what people don't see.

I started thinking about what an iceberg for working caregivers might look like and I came up with this:

What employers may see/think

• High performer, but is away a lot for appointments
• Stays on top of deliverables when working from home, but do they really need this flexibility?
• Does not cause internal drama with peers, but seems to have ongoing 'personal issues'

What employers don't see (aka AWESOMENESS)

• Working caregivers are excellent at problem solving
• They can thrive in times of uncertainty
• They have high empathy skills when working in teams
• They are always learning new skills and apply these to the workplace
• They are not concerned with office drama/getting all the glory
• Work can get done during atypical hours
• Work can get done anywhere (even at a hospital)
• They are extremely efficient (may even produce 3x the output)
• They will be fiercely loyal in exchange for flexibility

I recently decided to leave the corporate work environment because a) it takes too much energy to come up with answers to 'how was your weekend?' that are not related to my actual life (no one wants to hear about your 'weekend getaways' in emerg) b) it takes too much energy to try to get 'accommodations' (i.e. working remotely, time off for appointments etc.).  

The good news is that I can now bring my skills to projects that I feel very passionate about and work with really cool people!  YAY!

P.S. building a disability support program from scratch for your child so that you can go back to work does not seem to appear anywhere in the maternity leave iceberg above. Maybe we need to have an updated picture for these parents and caregivers?

Rethinking Healthcare Engagement

This is a space for to reflect about my 15 year journey in engagement as a caregiver in the paediatric healthcare system. Often when we think about the word 'engagement', it is coming from an organization or research perspective and includes things like how to do engagement 'right' and the benefits to an organization/research. Rarely do we speak of the benefits for people with lived experience (PWLE) or the emotional labour that is required to engage. For me, I have had many instances where I have felt tokenized, not listened to or just straight up felt badly after an engagement experience. I think it's time to Re-think Engagement from the lived experience perspective and consider the following:

Readiness to Engage

Depending where you are on your healthcare journey, there may be different reasons to engage. Early on in my journey, I was presented with several engagement opportunities. I felt flattered at the time and felt guilty saying no. Engagement stirred up feelings that made me think that I was part of a community, but these feelings were often short-lived. Engagement also gave me what I now realize was a false sense comfort when things were spiralling out of control (healthcare navigation-wise). It was easy to trick myself into thinking that I was going to make a difference and that my efforts might change the system for the better. In reality, I did not have the insight nor the understanding of the difference between true and 'fake' partnerships and I was not able to protect myself when I was being tokenized.  

What Problems Need Solving in Healthcare?

Engagement has been praised as a better way to build healthcare solutions, however the 'problems' we are tackling typically originate from the research or organization perspective.  While engaging PWLE can make solutions more relevant, the overall effect is negligible if you are tackling the wrong problem in the first place. In my 15 years of engaging with the healthcare system I have rarely had the opportunity to talk about and find solutions for the REAL problems that my family has experienced. Ultimately, I have been and still am left to solve these problems on my own:

• Finding childcare for my technology dependant child so that I could go back to work after maternity leave.
• Figuring out how to build a customized school support program that evolves with my daughter's developmental needs so that she can attend school from junior kindergarten to grade 12.  
• Finding a way to prioritize whole person solutions for my child's daily procedural pain within a fragmented system that emphasizes specific body parts.
• Finding a flexible and empathetic workplace that allows me to earn money to cover expenses while balancing all of my family's needs (including the health needs of my child).
• Managing finances so that we can cover $25K of out of pocket medical expenses that we will incur when my husband retires (and loses private health benefits). (Or figuring out a way to get this covered by the government).
• Finding mental health supports that are specifically designed for caregivers with specific customized solutions (not just general self-care suggestions).
• Finding supports that are specifically designed for siblings of children with chronic health needs.
• Identifying productivity 'hacks' that will save energy, time and or money.
• Figuring out my role as a parent and what my daughter needs to learn as we transition from the paediatric to the adult care system. 
• Figuring out how to to separate my emotions from my child's healthcare challenges so I can talk to healthcare professionals in an efficient and effective way.
• Figuring out which aspects of my 'story' I am comfortable sharing publicly and the differences between 'my story' and 'my child's story.' 

I would love to start working with healthcare administrators, providers and researchers to look at problems that originate from people with lived experience (PWLE) on a granular level and then reverse engineer practical and sustainable solutions within the healthcare system. I would also love to find a way to highlight organizations and programs that are already doing great things, analyze what makes them successful and then figure out how these programs can be scaled.