2010 TRAC-PG Pediatric Palliative Care Research Symposium
LISTENING TO THE VOICES OF DYING CHILDREN: RAISING AWARENESS AND EMERGING RESEARCH
Following the wonderful response to the first Inaugural Pediatric Palliative Care Research Symposium in 2009, The Palliative and Bereavement Care Service at SickKids and the Team for Research in Adolescent and Childhood Palliation and Grief (TRAC-PG) held the second annual Pediatric Palliative Care Research Symposium at SickKids on Wednesday Sept 29, 2010.
The one day free event highlighted Grand Rounds keynote speaker, Myra Bluebond-Langner, PhD, Distinguished Professor of Anthropology, Rutgers University, Camden, NJ, oral and poster presentations, workshops for researchers, clinicians and families and an evening public town hall event.
AGENDA
Posters were available in Garden Patio/Rotunda 8:00am-6:00pm
9:00 - 10:00 Greetings Marilyn Monk, Vice President, Clinical Program, Hospital for Sick Children
Grand Rounds: “Out of the mouths of babes ...”: Engaging Children’s Voices in Palliative Care Research and Clinical Practice, Professor Myra Bluebond-Langner, PhD, True Colours Chair in Palliative Care for Children and Young People, UCL Institute of Child Health and Great Ormand Street, UK, Distinguished Professor of Anthropology, Rutgers University, Camden, NJ
10:15 - 12:00 Innovations in Participatory Research and Knowledge Translation , Dr. Katherine Boydell, PhD, Research Scientist, Community Health Systems Research Group, SickKids
12:00 - 1:30 Poster Session, Lunch and Parent Breakout Session
1:30 - 3:30 Café Scientifica (oral poster presentations listed below)
4:00 - 5:00 Panel Discussion Dr. Christine Newman (moderator) with Dr. Jonathan Hellman, Dr. Sanjay Mahant, Maria Rugg (CNS, NP), Dr. Maru Barrera (PhD), Wendy Shama (MSW), Joanie Turner (bereaved parent), Marilyn Monk, BSc, MSc(A)N, Vice President, Clinical Programs
5:00 - 6:00 Public Town Hall Event with Myra Bluebond-Langner
6:00 - 8:00 Wine & Cheese & Desert, Award and Donor Recognition, Book Display, Web Demo
Café Scientifica
Eaton-Russel, C. & Teschner, A.Children’s Perspectives: Towards a Better Understanding of their involvement with their dying siblings
Steele, R., Siden, H., Cadell, S., Davies, B., Straatman, L., Brant, R. & Andrews, G. Charting the Territory: Protocol Design & Preliminary Results
Cadell, S., Straatman, L., Siden, H., Davies, B., Steele, R., Liben, S., Hemsworth, D. & Wilson, K. Caregiving Parents of Children with Neuromuscular Conditions: Experiences of Stress and Personal Growth
Beaune, L. MSW, Nicholas, D, Ph.D, MacClulloch, R. Barrera, M. Newman, C., Rugg, M., Bouffet, E., Widger, K., Jeffrey, M., Antle, B. Careful Transitions: Maternal Experiences of the Transition from Hospital to Home based Paediatric Palliative Care Services
Alexander, S., Greenwood, M. & Harrison, C.Please Don’t Tell My Child She’s Dying:!” An exploration of ethical, legal and clinical issues regarding truth telling
Widger, K. & Tourangeau, A., Developing a Measure of Quality Pediatric End-of-Life Care: Engaging Parents in the Process
Barrera, M. Parental Hope when Facing poor Prognosis after a Diagnosis of Childhood Cancer: A Prospective Study
Barrera, M. Parental Report of Development when Facing Poor Prognosis after a Diagnosis of Childhood Cancer: A Prospective Study
Turner, J., McDonald, V., Blumberg, J. & Morash, S. Honoring The Voices, Still partners in care: How Bereaved Families Contribute to Paediatric Health - Poster presentation
Kathleen Brownrigg, RN, MN(s), Gurjit Sangha, RN, CNS, Maria Rugg, RN, APN, Dr. Christine Newman, MD, FRCP (C) Compassionate Extubation in the Home: An innovative approach to pediatric end-of-life care
