I was awake at 3 am this morning, fuming about my son’s school. They have a habit of asking the Resource Teacher guidance about what to do about Aaron, making a decision themselves and then merely informing us afterwards. Because Resource Teachers know my child best, don’t you know – besides, all these ‘special needs children’ are all the same. (sarcasm intended).
The fact is that we know Aaron best. In fact, Aaron knows Aaron best, and we are working on helping him speak up more effectively for himself.
Decisions should never be made on our behalf. We should be involved in the whole decision making process, as the Resource Teacher is not the expert of our son.
Then this morning, my own health authority posted a position for a Family Advisor position for their Neonatal Program. I will be the first one to stand up and applaud this hiring. Family and patient advisor positions have been exceedingly rare in Canada, but I see the tides are changing. I am grateful to be the Family Advisor at Sunny Hill Health Centre for Children in Vancouver. I also learned so much from my four years as the Family Centred Care Consultant at the Stollery Children’s Hospital in Edmonton.
I’ve been thinking about what makes an effective Family Advisor. I realized there are many parallels between Resource Teachers and Family Advisors. Are either of us experts of other people’s children? NO.
Family Advisor can only answer the question of what would the families want with an answer from our own personal experience, anecdotal information from what we hear from families, or what the research says.
My purposely vague answers are – How would you feel if you were the family? Why don’t you ask the families themselves?
When I get asked – Should we do this or this for families? My answer is: It depends.
There is no one answer to family preferences – for all families are as different as snowflakes. I’ve learned this the hard way. Early in my career, I concluded that an information binder for families was a great resource. Then I asked a family member who actually received the binder. She said to me: I hate that binder. She offered a bucketful of constructive advice to improve it. This was a good and humbling experience for me. I should never make assumptions (for they make an ass out of you and me).
A physician once told me: there are no always or never in medicine. I’d say this is true with partnering with families too. The only always for me would be: Treat people with respect. Be kinder than necessary. Listen to people. Consider them capable. Demonstrate compassion. Offer choices. Share information.
I’m excited to have a colleague in the Family Advisor world in Vancouver. My hope for them is that their hearts are open, they have the ability to say I don’t know, they are patient & kind, they honour both family and staff stories, they practice non-judgmental listening and they don’t try to fix people. Pausing and gently taking the time to understand why is such a powerful approach for this position.
For in my humble opinion (and remember I’m only n=1), that is what this type of position is all about. Family Advisors (and Resource Teachers) are the experts of nothing.
Edited to add wisdom for Family Advisors (both paid and unpaid) from Karen Copeland:
- We can create space for families to share their stories when they are ready.
- We can ask why do you think that is questions to staff, and engage staff to be ready and open to hearing the family voice.
- We can guide health providers to ask the people who know best – and that’s the children and families themselves.