Here are several broad initiatives to deliver family centred care in a large complex medical institution like SickKids Hospital.
1. Expand parent participation to every service and most teams in the hospital aiming to reflect the race, gender and background of the parent population as a whole. The hundreds of volunteer hours per month are provided by parents whose children are no longer in care, are experiencing a positive care path or volunteers interested in contributing their experience. The 2005-2006 Family Advisory Committee report notes it was "initiating a transition that will soon see the Hospital assume full administrative responsibility for the program. This should enable many more staff and students, often in interdisciplinary groups, to participate in the sessions and to take away with them ideas to draw upon and strategies to apply in their practice." The hospital could then go further, introducing parent advisory involvement at all levels.
2. Expand patient and family participation in SickKids data flow to open electronic access to the key data (contact info, diagnosistic history, care maps, schedules, actionable items, parental presence and resusitation wishes) and provide an entry point for notes on meds, symptoms and daily events. The parent login facilitates family-centred interprofessional practise and makes transparent all possible junctures along the care path including DNR orders. No such parent editable access exists however computer databases are being devised and funded continually and SikKids website is to be completely revamped.
3. Thanks to a blog comment on this entry, demonstrating the power and speed of collaborative data, we can naturally add a third facilitator of family-centred care: helping families to connect at parent meetings with a SickKids facilitator (as on floors 5 and now 4) or as Lisa suggests via a buddy system. So simple you can see the signs: Get a Buddy; Become a Buddy.
We would love to hear of any successful initiatives relating to family advisory committees, collaborative computing or parents helping parents that you might have seen, heard or read about at SickKids or elsewhere.
Celebrating Sasha and supporting SickKids patient and family centred interprofessional care, staff and family partnership, patient safety, palliative care and Alagille Syndrome. Thanks to family for love and visits, laid back Dr Michael Peer, Dr Jennifer Russell's tireless coordination of LFHC, GI, CCCU, Gen Surg and IGT, all the staff at Hospital for Sick Children and Max and Beatrice Wolfe Centre and final homebound team Stephen Jenkinson, Dr Russell Goldman and TCCAC.
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ReplyDeleteI think you are right that many parents would be willing to volunteer to support other parents. I certainly would.
ReplyDeleteEven something like the 'parent buddy' system I saw at Mt Sinai NICU (just a poster on the wall mind you, I was never actually assigned a buddy) would go a long way towards supporting families. It was not until the end of our hospital stay that I realised other people were having the same experiences we were.
I would have to say communicating with other parents was not encouraged in my experience.
Lisa