TRAC-PG palliative and grief research

On September 24th we reported to a TRAC-PG retreat on the website's progress - I love how such detailed and lengthy interdisciplinary meetings are called "retreats". In the time since we knew Sasha was dying, the palliative service at SickKids have given generously of their time. Laura Beaune heads up palliative research efforts and has been our website contact person. With Andrea Wheat, Laura has faciliated and guided our journey in Sasha's memory to help support families and Interprofessional Practise. The first website formulation included a public and member site for TRAC-PG, blog for families and private discussion boards for patients, families and their care team. The discussion board idea is of great interest, a place where parents can record daily events whether at hospital or in the community with input from all disciplines (on a non-emergency basis). When SickKids IT staff shared their plans to offer family blogging tools (SickKids Care Pages have now been launched) and was overhauling their entire web CMS to allow parent recording we put the blog and forum on hold. After almost a year of planning, we are eager to move onto the design and then the build phases for a TRAC-PG website that describes the full range of projects with Member areas and Comment feedback and attention to resources for Patients and Families, Clinicians and Volunteers and Policymakers and Researchers.

And what is TRAC-PG you might ask? Team for Research with Adolescents and Children in Palliation and Grief (TRAC-PG) comprises interdisciplinary clinicians and clinical researchers from hospitals, academic and community settings focused on evidence based paediatric palliative care research. TRAC-PG emerged from a research interest group within SickKids Research Institute’s Child Health Evaluative Sciences (CHES) in 2003 by Dr. Beverley Antle (read more about this Canadian inspiration behind palliative and family-centred research), Dr. Maru Barrera and Laura Beaune to collaborate and develop a cohesive program of psychosocially based research to further understand the living, dying and bereavement experience of children with life threatening illnesses and their families. TRAC-PG aims to generate new knowledge and integrate evidence based, family-centred palliative care across the health care systems. TRAC-PG's research focus aims to provide real data to support the call for expanded palliative services as research is vital to impliment initiatives in a healthcare setting. It is simply not enough to have anecdotal evidence that normalizing palliative and bereavement services is good for patients and families. In supporting the growth of paediatric palliative care programs I really could not have chosen a more vital and impactful group to volunteer with; it also warms my heart that among the dozen professionals at the meeting, five cared for Sasha directly.

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