2011 TRAC-PG Pediatric Palliative Care Research Symposium
2011 Pediatric Palliative Care Research Symposium: “The Circle of Care: Promoting Palliative Care at Diagnosis of a Life Threatening Illness”
The 3rd Annual Pediatric Palliative Care Research Symposium was hosted by TRAC-PG and the Palliative and Bereavement Care Service at SickKids on October 5, 2011. Highlights of the day included: distinguished key note speaker: Dr. Joanne Wofle, Division Chief of Pediatric Palliative Care, Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Director, Palliative Care, Children’s Hospital Boston; an interdisciplinary panel debate; scientific oral and poster presentations by TRAC—PG members; and a consensus building exercise to identify key research quesTIons for future study.
Agenda
Times
9:00 - 10:00
Greetings from Dr. Daneman, Chief of Pediatrics, SickKids
Grand Rounds with Dr. Joanne Wolfe, Boston Children’s Hospital ” Easing the Suffering of Children with Life-Threatening Illness”.
10 - 10:15
Refreshment Break
10:15 – 11:15
Panel Discussion, Moderator, Maria Rugg
11:15 – 12:30
(Consensus Building Exercise (part one)
12:30 – 1:30
Poster Session & Lunch & Parent Break Out
1:30 - 3:00
Consensus Building Exercise (part two)
3:00-3:15
Refreshment Break
3:15 – 4:30
Café Scientifica (oral poster presentations), Moderator: Christine Newman
4:30- 7:00
Wine & Cheese & Desert & Sponsor Recognition
CAFE SCIENTIFICA ORAL AND POSTER PRESENATIONS BY TRAC-PG
1) Laura Beaune, David Nicholas, Maru Barrera, Mark Belletrutti,, Jonathan Blumberg, Stanley Ing, and Mathew Milen. Fathers’ Experiences with Parenting & Grief: Unique Considerations in Caring and Research in Palliative Care
2) A Thompson, K Miller, J Crossenbacher, Maru Barrera, B Compas, B Davies, D Fairclough, MJ Guilmer, N Hogan, K Vannatta, & C Gerhardt. Multiple Perspectives of Bereaved Children’s Emotional and Behavioral Adjustment after a Sibling Death from Cancer
3) Kimberley A. Widger, Ann E. Tourangeau, Room for Improvement: Mothers’ Perspectives on Children’s End-of-life Care
4) Ceilidh Eaton Russell, Kimberley Widger, Maru Barrera, Laura Beaune, Susan Cadell, Adam Rapoport Maria Rugg, Rose Steele, “Sibling’s Perspectives: Toward a Better Understanding of their Involvement with a Dying Child”
5) Barbara Muskat, Samantha Anthony, Laura Beaune, David Brownstone, Pam Hubley, Dr. Christine Newman, Dr. Adam Rapoport. “Experiences and perceptions of paediatric health-care professionals providing end-of-life and palliative care”
6) Susan Cadell, Bluthardt, C., Betty Davies., Hemsworth, D., Stephen Liben., Hal Siden, Rose Steele. & Lynn Straatman. “Elation” and “Grief”: Illustrating how the Positive and the Negatives Co-exist for Parents of a Child with a Life-Limiting Illness.
7) Rose Steele, Hal Siden, Rollin Brant, Susan Cadell, Betty Davies, Lynn Straatman, Adam Rapoport & Gail Andrews . Charting the Territory: Symptoms in children with degenerative, life-threatening conditions
8) Adam Rapoport, S. Lawrence Librach, Giovanna Sirianni, Amna Husain. “Not just little adults: Palliative care physician attitudes towards providing care for pediatric patients.”
9) Deborah Tomlinson, Pamela Hinds, Ute Bartels, E, Hendershot , Lillian Sung. Parents can Sensitively Report Determinants of Quality of Life for Children with Cancer Receiving Palliative Care
10) Laura Beaune, David Nicholas, Susan Cadell, Cindy Bruce-Barrett. Pandemic Planning: Developing Consensus towards a National Planning Guide for Hospital Based Pediatric Palliative Care programs”.
11) Adam Rapoport, Rose Steele, Maria Rugg, Christine Newman. “Parental perceptions of forgoing artificial delivery of nutrition and hydration during end-of-life care for their children.”
DEVELOPING CONSENSUS AND BUILDING KEY RESEARCH PRIORITIES IN PEDIATRIC PALLIATIVE CARE
Introduction:
One of the strengths of the TRAC-PG symposium has always been the diversity of its registrants: healthcare providers and bereaved parents; researchers, clinicians and administrators; nurses, physicians, social workers, counsellors and chaplains and other allied health care professionals . And yet despite our different professional backgrounds, there is a common bond that unites us all – a desire to improve the care provided to children and families in need of palliative care through research efforts.
In the 2011 symposium we attempted to harness our similarities and differences to create a unique consensus building exercise to collectively identify the top research priorities in pediatric palliative care. Although the primary purpose of the exercise was to brainstorm through a uniquely collaborative activity, it was also our hope that our work together will have a larger impact. First, we hope that it will influence your own personal research priorities; you are free to use and share the findings of this exercise for your own purposes. We also hope that the outcomes from this will benefit TRAC-PG, and perhaps even the larger pediatric palliative care research community as a whole.
Thank you for participating in and contributing to this unique exercise!
RESULTS
