Charting the Territory: Children and families living with progressive life-threatening conditions – Author Commentary

Dr. Hal Siden

This month’s blog post features commentary by Dr. Hal Siden on his article, “Charting the Territory: Children and families living with progressive life-threatening conditions”.

Feature Article: Siden, H. & Steele, R. (2015) Charting the Territory: Children and families living with progressive life-threatening conditions. Paediatrics & Child Health.

Why did we write this article? Rose Steele and I wanted this article to be a high-level summary of preliminary findings, and in some ways, a companion to our Protocol article from 2010 (BMC Pediatrics 2010;10: 67.) where we describe the research protocol.

We also thought it would be useful to describe a large research undertaking that many of the contributors to this special issue of Paediatrics & Child Health were also a part of: Liben and Rapoport (editors), Davies, Spicer, Vadeboncoeur, Macdonald, Friedrichsdorf, Grégoire (authors). While ours is not the only research article in this issue- see “Quality indicators for paediatric palliative care” by Charlebois and Cyr from Sherbrooke – this CTT article represents a substantial undertaking that resulted in an enormous database.

Our next steps are to engage collaborators such as Dr. Anita deLongis of the UBC Psychology Department and her PhD student Ellen Stephenson, who are now are looking at how the siblings are doing.  Stefan Friedrichsdorf is examining medications and symptoms.  Dr. Liisa Holsti from UBC Occupational Therapy /BC Children’s Hospital and her colleague Sandi Tatla have been examining children’s function as shown in the annual PEDI evaluations.

This is a good opportunity for members of our PedPalASCNet team to once again think about inquires that they would like to undertake. What questions might arise?

Looking forward to hearing ideas.

 

 


 

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