An Imaginative Partnership: Parents and the doctors who care for their children - Frank Gavin

Frank Gavin's contribution to the May/June 2009 Paediatrics and Child's Health is a must-read for staff and families. He draws on parent/patient feedback and two decades of hospital and health care involvement to tease out themes that resonate with parents when it comes to staff engagement, identifies core barriers to parent partnership and offers vivid, at times surprising reflections:
One quality I expected this mother or some other parent to identify as essential in a paediatrician was never mentioned: empathy. Instead, what she and others seemed to be hoping for was something best called imagination... a need not for the doctors to be feeling what they were feeling but to comprehend the contours of their lives, at least once, from the inside.
He also includes a parent 'map' with almost 30 circles of care and supports created by the mom of a child with cerebral palsy that dramatically shows the complexity of the family's life:

She created an earlier version to help herself and others get an overview of what she called the elements of her son's care and the people involved in that care. More particularly, she had come to realise and to worry profoundly, given life's uncertainties, that no one else possessed anything close to her knowledge of all those elements that made her son's life the wonderful but difficult life it was and is.

Thanks Frank for this rich and beautiful exploration of staff-parent partnership in hospital and at home. The focus on the mom's map I think is an inspired valuation of work that some parents already do informally. The question "How do staff help parent's and children better navigate?" is a constant refrain in hospitals and yet parent's are often doodling and inking the links in care for themselves. Staff and families could create these maps together as a component of that imagining relationship. Should a parent wish to create a map for themselves to show staff, or work on it jointly, these maps could be a super tool and point of reference for a clinic visit and an excellent accompaniment to family white boards, journals and binders. They could start as hand-drawn sketches and then move to PowerPoint templated files. Maybe one-day a clever developer with a small budget could create a website mapping tool available anywhere and anytime online or on the network. Read the full article here.

happy birthday Sash

Here's sister Eve looking at you Peach.

June 6 was Sasha's birthday, June 20 her death-day and June 21 her sister Mia's birthday. Needless to say, June is one helluva month for our family. Pamela pushed the walk to October so we could take it easy, and it has been a month of playing in the garden, planting, bicycling, wagon rides, dancing, bbques. Mia and Eve know Sasha's name and can recognize her in a picture. I expect anytime Mia will ask where Sasha is. Maybe we will have cake and candles on Sasha's birthday after Mia knows more.

She is very much in our hearts. I have to remind myself she is more than the sum of my questions about her care and our work at Sickkids. She was an incredible girl and I feel blessed for the brief time we were physically together. When I recall exact moments of care I am transported by waves of love and grief to heights and depths not imagined.