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Child Life Specialists in the PICU

Child Life Specialists offer pediatric patients' families support starting at diagnosis.

Photo of Daniel Mazour
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"We can avoid a lot of complicated grief and fear by being honest and opening communication [...and seizing] small windows to propel the conversation forward."

I recently met a child life specialist who works in a pediatric intensive care unit. Here's what I learned:

  1. A relationship built on trust over time between professionals and patients/ families is essential to professionals actually being supportive for patients' decision-making. Child Life Specialists are unique in healthcare because they can have this longitudinal relationship in a purely supportive and educational role.
  2. Families are receptive to an outsider coming in to facilitate these tough conversations. They come around to the view that they're protecting their child by being honest. With adult patients too, conversations often don't happen because patients want to protect their families and families want to protect their patients. These conversations help families feel more like they're doing everything for their child instead of to their child.
  3. Every family already has unique dynamics, sometimes owing partially to their cultural background, which any outsider must take the time to appreciate. Ask, "what gives your family strength?" What the family already has in place is essential to how they will cope with what they now face.

What is a provocation or insight that might inspire others during this challenge?

How might we introduce a supportive "Child Life Specialist"-type role into the care of adult patients? How might we facilitate end-of-life conversations in a way that is helpful and personalized to each individual family?

Tell us about your work experience:

Blogging @ http://www.sensemakingdesign.com (about end-of-life design project). Student @ Wash U. Owner & VP of Strategy @ University Trucking. Market Strategies Intern @ AVIA. Former Intern @ Oxeon Partners

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Hi Daniel, thanks for the post! It'd be great to add an image with this. Images help grab attention and tell a story. You should be able to use the Edit Contribution button on the top of your post and follow the instructions to add images from there. Looking forward to seeing more of your inspiring insights on OpenIDEO.