Father's palliative parenting grief research poster

The poster for "Fathers' Experiences with Parenting & Grief: Unique Considerations in Caring and Research in Palliative Care" has been accepted at the Hospice Palliative Care Ontario 2012 conference.

Thanks to the skills and big hearts of Sickkids' Laura Beaune, Dr Maru Barrera, David Brownstone and Stanley Ing and Stollery's David Nicholas, Dr Mark Beletrutti and Mathew Milen for embracing the challenge of including a parent from SickKids Family Centered Care Advisory Council in the research.

Learning how a parent can participate in family centered care research has been an experience we also hope to document. This poster presents preliminary findings and emphasized a desire for peer support.

Trac-PG Spring 2010 News

The Spring 2010 newsletter of The Team for Research with Adolescents and Children in Palliation and Grief is packed with news and I was so happy to see family opportunities for research, the family galley and a big advertisement for Camp Erin and a family fundraiser. My how this wonderful palliative network newsletter has grown in the last three years!

You can click on one of the four pages below or download and share the whole Trac-PG spring 2010 update.

So happy to see my little peach on the second page review of the website and Family Corner.

It is exciting to see staff calling out for partnership with parents who have experienced the dying and death and bereavement of their child.

TRAC-PG website launches

Two years in the works, TRACPG.ca was launched today with a content management software to allow the Team for Research with Adolescents and Children in Palliation and Grief to build content for TRAC-PG itself along with children, families, clinicians, volunteers, researchers, policy makers and advocates. Resources include Events Calendar, News Updates, Links, Key Reports & Documents, Education & Workshops, Literature Reviews and a Literature Database. Additional pieces will be phased in for email signup to HTML e-newsletter (replacing PDF attachments), Photo Gallery and member login with Comment. The team can add rotating photos on a per section basis, create text banners on 'sticky notes' on each section, tag or label stories for a tag cloud navigation and expand a Google map of the TRAC-PG network in Canada. Discussions in the fall of 2006 initially we also hoped to include a private login where staff, children in palliation and families in grief could communicate privately. After Sickkids IT department confirmed that Sickkids would be joining Carepages shortly and that a whole new website content system was in the works, we removed the patient-family-staff communication. By the fall of 2007, the work of architecting and designing the website began in earnest with the aim of an end of summer launch. And here it is, a little trimmer and a little later than the best laid plans but ready to help and celebrate palliative children and their families and remember (via one of the big home page images) Dr. Beverley Antle who was a strong force for Canadian family-centred research until her death in 2006 in the prime of her life due to a car accident, just a few months after Sasha died. Several big thank you's are in order: to the extremely talented and dedicated Gabriela Abrudan for designing and programming this elegant and highly functional site and for her patience with a very long project of the heart; to Laura Beaune who coordinates TRAC-PG research from Sickkids Palliative and Bereavement Care Service for somehow finding time to do all the visioning, discussion, feedback and status calls in the ONE very busy day a week she has at Sickkids - Laura's involvement in the site while dedicated to research supporting children and their families makes me confident the webite will have a positive impact; to Jodi Hamelin and Ashley Teschner for helping us finalize functionality and do most of the content population as part of their work with Palliative at Sickkids; and to my brother Kevin Blumberg for covering my time away from our joint work responsibilities.

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.