Pediatric palliative care and palliative medicine are my main areas of interest. Children and families living with life-threatening disease face a number of challenges. Pediatric palliative care is quite different than adult palliative care – there are different diseases, the trajectories are different, and the needs of children and families are different.
Longitudinal studies of children with life-threatening conditions, epidemiology of children with these condition, and outcomes of palliative care are areas of active inquiry.
I am also interested in pain assessment and pain management. Pain is not well understood in children who are cognitively normal, and is very poorly understood in children with neurological impairment. Finding new treatments and tools for assessing pain is important. I am specifically interested in some new and emerging areas in biological markers of pain in children. We are launching a new study of pathways to assess and treat pain/irritability in non-verbal children.
I am the principal investigator of a CIHR-funded network, PedPalASCNet (Accessible, Sustainable, Collaborative Network in Pediatric Palliative Care), that has been together since 2004. We are a national network of clinicians and researchers in Pediatric Palliative Care representing multiple disciplines. We use a model of 3 lenses or prisms – biomedical/clinical, psychosocial, and health services – to examine the experience of children and families with life-threatening diseases. More information can be found at: http://pediatricpalliative.com
Smaller projects include modeling complex care services; economic evaluation of pediatric hospice care; examining whether major surgery is associated with developmental milestone losses in children with severe neurological impairment; observing how families simultaneously engage in curative care and in comfort care; exploring the “meaning” of a genetic diagnosis for families who live with rare diseases.