reflections on CFAN

lobster-man

When you let moms + dads out at night, they socialize with Kyle, the Lobster Man. 

The past ten years, if I’m fortunate enough to secure funding, I attend the CFAN (Canadian Family Advisory Network) Symposium.  This year it was in Halifax, so I embarked on a trip across Canada to meet up with my peeps from children’s hospitals in Canada.

One problem with going to conferences it that I feel all inspired when I’m there, and then the moment I step off the airplane back home, the inspiration has dissolved and I’m back to the grind again.

In an attempt to help with my remembering, here’s my mini-report about the CFAN Symposium, pecked out on my laptop on my hotel room bed.

CFAN is for those who are interested in patient and centred care in child health in Canada.  Typically, paid hospital staff bring a team of family volunteers who are on Advisory Councils in Canada.  Unfortunately, this means that the families who want to attend CFAN have to find a hospital to fund their trip.  They need to be able to take time off work, find childcare for their kids and be able to travel far from home.  On my wish list for future dates?  Youth and family scholarships that folks can apply for to offset the travel, accommodation and registration costs, or more hospital support to send more family and youth reps.  It is important for CFAN to expand its base, so it isn’t just the privileged few who literally sit around the table.

The CFAN workshop used to be purely family meetings, but we realized that this approach was not inclusive and led to us merely talking amongst ourselves.  This was great for information sharing and peer support, but not so great for informing clinicians and administrators about the family experience in health care.  Sharing with our professional colleagues could not happen behind closed doors, so we opened our doors.

This year, a diverse 70 folks registered:  families, youth, paid and unpaid family advisors, clinicians, physicians and administrators filled the room.  Although we welcomed all interested parties, CFAN’s agenda is firmly set by families.  After years of attending health care conferences that are strictly health care professional focused, CFAN is our time.

For those of us fortunate to travel to Halifax, it was an engaging day. One participant noted:  “The day was long, but didn’t seem like it – it zoomed by so fast.”  Thankfully, the organizers (including new co-chair Karen Sappleton, founder Frank Gavin and local host Catherine Gunn) offered a mix of lecture, entertainment, storytelling, history, small group conversation and an engaging Youth Panel to keep us learning and inspired.

Karen welcomed us with a meditation, which is a lovely way to settle into a long day.  We began with Holly Gillis presenting in Sydney’s Spot, an annual speaking spot set aside exclusively for the family story.  This special spot is named in the memory of the daughter of former CFAN Steering Committee member Ruth Hartanto.  (More about Sydney’s own story is here).  Opening the day with a family story is a powerful way to ground the audience.  So often health conferences fill their programs with talks about research and programs and celebrity speakers and they totally forget the common reason that brings them to the room – and that reason is the patient and family.  Sydney’s Spot is there to remind us what health care is really about.

Local family speaker Holly Gillis spoke in Sydney’s Spot this year.  I was impressed by her clear messaging and passion.  As an added bonus, her twin daughters accompanied her – two important reminders about what really matters.

Holly shared not just her passion, but her wisdom.  Her key take-away was that her family’s experience in the health care system was consistently inconsistent. She gave many practical examples about exemplary care, which came from the insights from her six year old daughters.  It felt good to her girls when people:

  • talked to them directly, instead of to their mom
  • smiled at them in the hospital
  • helped them in the hall when they were lost

The girls had the important recognition to know that they knew when people who worked in the hospital were having a bad day, and that didn’t feel good to them at all.  Holly also shared that ‘finding my voice was a struggle’ because of the power dynamics with professionals. Holly did a great job of emphasizing that the small things do matter.

Then Frank Gavin, CFAN’s Founder and National Liaison, gave an interesting presentation about the 15 year history of CFAN,  ending with a call to members to consider the question: what should CFAN’s purpose be?

Social media is hot right now.  Dr. Christine Chambers gave an energetic, creative talk about engaging with families to further the message of the It Doesn’t Have to Hurt campaign.  Christine is a super engaging speaker – expertly weaving both humour and data into her talk.  I’ve never seen a research talk like it before – brava to her.  What I found most interesting were her reflections about breaking down the barriers between the world of research and the real world.  She’s harnessed the power of social media to do that.  Christine’s passion stems from her experience as a mom – when her children had hospital experiences, she was shocked that her research about best practice for managing pain in children had not been transferred into the hospital setting.

Christine had so many great quotes (and stunning visuals on her slides, too).  I’ll let them speak for themselves:

  • the issue isn’t do parents go online or not to get health information – that ship has sailed
  • there was lots of eye rolling from scientists when I first talked about using social media
  • there’s a 17 year gap between child research and when it is used in real life

Wanting to spread the good word about managing pain in children led Dr. Chambers to connect with ‘real life’ moms who are taking their kids for immunizations and lab work.  She reached out through Twitter to family leaders and parenting organizations to spread the word about strategies to minimize pain.  Voila – her mom connections shared this super cute video all over the world via Facebook and Twitter – saving many kids from the very real pain of needles.

The CFAN group loved Christine’s talk and eagerly shared their own ideas about how health care professionals could communicate with families after the lunch break.

The day ended on a high note, with a Youth Panel with three young ladies who had health care experience at IWK and SickKids.  We were so fortunate to have these articulate young women dedicate their time to share their wisdom with a room full of moms and dads and clinicians.  Jennifer Berube, the moderator with IWK, began the panel with this:

A wise person knows there is something to be learned from others and:  Stop.  Listen.  Wonder.

It was such a privilege to bear witness to the stories of the young ladies on the Youth Panel.  I learned so much from them:  that they liked to get together at social events with other youth; that they didn’t connect because of a similar diagnosis – what was important was that they had common experiences in the hospital; that youth engagement works when you go OUT to the youth to let them know about the Youth Council (and not just put a poster on the wall).  All three panelists expressed that serving on councils helped them to come to terms with their illnesses, especially when they could see they had a hand in making things better at the hospital for other patients.

One eloquent young lady concluded: Some of my best memories at the hospital were when I felt most vulnerable and a staff member cared for me.

That sentiment of caring, my friends, is also the heart of CFAN.  This is a community that cares for each other in an open and non-judgmental way, and I feel fortunate that we spent time together for a few days in lovely Halifax.  This will likely be my last CFAN workshop for some time, for I, too, need hospital funding, and am leaving my hospital position in early November to go back to freelancing again.  Take good care…

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