it depends…

more conferences in quebec city please!

more conferences in quebec city please

I had the great honour of speaking at the Canadian Family Advisory Network (CFAN) this weekend.

I first spoke about Family Councils – in my experience, what works and what doesn’t work. I’ve posted my lessons learned list here. In the end, I concluded that the answer to the questions: should we have a Family Council? What should it look like? – is: it depends.

Then this morning, I had the great honour of sharing the stage with Christie Oswald, Sarah Topilko (from the Stollery Children’s Hospital), Rita Visconti (from SickKids) and Kate Robson (from Sunnybrook Health Centre) to share stories on a topic dear to my heart – peer support. I handled the ‘soft’ part of the presentation about the value of peer support, with Christie and Sarah presenting on Stollery’s Family Bedside Orientation Project, and Rita and Kate spoke about the important topic of celebrating families and babies in NICU environments.

What does peer support look like for families who have children with medical needs? The answer to that, too, is it depends.

There is not one answer to any of these questions. That is the challenge with this work. No one size fits all. There is no textbook answer. This is because you are working with human beings, and that in itself is challenging and demands flexibility.   People are snowflakes; we are all different, and not one of us are the same.

When I started to be involved in this national work seven years ago, the only people at a CFAN meeting were the families themselves. We were all preaching to the converted about family centred care. Zoom ahead seven years, and the CFAN meeting has considerably diversified – the room was full of families – both paid family advisors & volunteers – young adults, health professionals, physicians and administrators. Word about family centred care has spread beyond families. Let’s keep spreading the message of the power & value of the family voice.

What I like to say about CFAN is if you attend, you will laugh and you will cry. I had so many lessons from this powerful session.

“Joy is contagious,” said Kate Robson, talking about celebrating babies in the NICU, including having holiday parties with Santa and celebrating Halloween with families (hint – small babies can be fit into dog costumes).  Joy is contagious – what a powerful observation.

Some of my favourite take-aways included the notion that just because a program ends, doesn’t mean it is a failure. Not all families are extroverts – and perhaps they don’t want to participate in parties or other social events in the hospital (but some do) – maybe they just need quiet space with beauty and art instead. What dads need for peer support and what moms need can sometimes look very different (hint, not all dads like to bond over sports and beer. But some do).

Again, what should peer support look like? The answer is: it depends. The most important thing is that we remain open-hearted to different ideas and avoid judgments and assumptions. When you are starting up something new, give up on the idea of ‘perfect’ and move towards ‘good enough’. Do not give up. Try again. Do not get so focused on numbers – making a difference to one person is enough.

In the end, our panel discussion was not an expert panel discussion. We had no answers for the audience. The fact is that we do not have the answers. The answers all reside inside of you. You know in your heart what you have to do.


2 thoughts on “it depends…

  1. Sarah Topilko says:

    Thank you so much for all of your encouragement and support this weekend. I’m so happy to have met you and am so inspired by the work you do.

  2. sue robins says:

    Sarah, I think you did such an awesome job today at your first CFAN presentation. The Stollery is very lucky to have you. I hope we can keep in touch (even via Twitter!). Enjoy Vancouver!!!

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