The Innovation Fund in Children’s Palliative Care Research

The Innovation Fund in Children’s Palliative Care Research offers family funds a new way to support pediatric palliative care research.The fund will support grant writing, program/evaluation development, LOI’s, related educational activities and seed grants for innovative clinical and basic science research in the following areas related to palliative care - communication; family centred care; end of life care; interprofessional practice; pain and symptom management; instrument development; program/systems evaluation; educational workshops/conferences; grief and bereavement and legacy making. Any health care professional, volunteer or team (in hospital and/or community) including members of TRAC-PG are eligible to submit a proposal for review by a decision making committee. All potentially life limiting children's illnesses will be considered. The deadline for submission is August 15, 2008 and for information please contact

The Sasha Bella Fund will contribute an annual gift of up to $5000.00 over 5 years and we are honored to have been invited to sit on the research selection committee.

New Sickkids Palliative Care Service Advisory Board

I was excited to hear that Sickkids Palliative Care Service has created a staff and family advisory board that will expand family involvement. We wish them every success in the challenging work of deepening an authentic family centred approach within the hospital for families living with dying, death, grief and bereavement. The summer 2008 Palliative Care newsletter (PDF, 115KB) includes highlights from the service and offers a list of the advisory members.

The executive members of the board are Dr. Maru Barrera, PhD, Psychologist, Haematology/Oncology, Laura Beaune, MSW, Palliative and Bereavement Care Service Research Coordinator, and Dr. Christine Newman, MD, Palliative Care Physician, Palliative and Bereavement Care Service, SickKids. The other members of the board are Cathy Bankert, Parent, Malcolm Berry, Parent, and Development Officer, GEP, SickKids Foundation, Mitch Blum, Parent, Dr. Mark Greenberg, Parent, MD, Senior Physician Haematology/Oncology, SickKids, Medical Director, Pediatric Oncology Group of Ontario (POGO) and POGO Chair in Childhood Cancer Control, University of Toronto , Julie Lachance, Senior policy analyst, Palliative and End of Life Care, Health Canada, Lorelei Lingard, Educational Researcher, Associate Professor, SickKids Learning Institute, Alison Quigley, Executive Director, Child Health Network, Karen Spalding, RN, PhD, Program Director, Master of Nursing, Ryerson University, VP Child and Youth Home Care Network, and Jodi Hamelin, MSW student from the University of Toronto and new research assistant for the Palliative and Bereavement Care Services at Sick Kids.

Canadian Family Advisory Network (CFAN) Workshop October 19th

For those interested in parent collaboration and partnership with health care professionals, this year's CFAN Workshop on October 19th at the Westin Hotel in Edmonton will be an exciting educational and networking opportunity. Between 9:00 am and 4:45 pm, CFAN hopes to offer:
  • reports from all CFAN groups represented focusing on key challenges and accomplishments
  • results of a survey from these CFAN member groups
  • presentations and discussion with representatives of youth councils about how youth and family advisory groups are now collaborating and can best collaborate in the future
  • presentations and discussion on existing family-to-family support / mentoring programs and how advisory groups can help initiate, develop, and sustain them
  • update from Dr. Bob Armstrong (Co-Chair of the Coalition and Chair of Paediatrics at BC Children's) on the ambitious multi-year advocacy project, "The Child and Family in the Healthcare System", that CFAN will help lead with partners in The Canadian Child and Youth Health Coalition.
  • a patient/parent/staff panel presentation from local hosts The Glenrose Rehabilitation Hospital on "recognizing and dealing with the elephant(s) in the room: diagnosis and beyond. " (tentative tile)
  • a Steering Committee business meeting open to all the evening before the workshop to revise bylaws and more clearly define roles for Steering Committee members
  • Steering Committee brief report to all at the end of the Sunday workshop
  • Sunday evening dinner and informal conversation
CFAN co-chair Frank Gavin also passed on that the updated program for the Canadian Association of Paediatric Health Centres (CAPHC) Conference October 19-22 also in Edmonton offers an "unprecedented degree of youth and family participation".

Sickkids Family Advisory Committee dissolved

As of last week Sickkids FAC has been disolved with the aim to reinstitute a new FAC by the fall. The disolution followed a lengthy review that called for more hospital support and greater visibility within the hospital. After almost two decades the current format was showing real strain. The small number of parent volunteers were undertaking education, participation on hospital committees and important hospital wide family centred initiatives. A staff retreat on the FAC that we participated in demonstrated enthusiastic staff support for staff members sitting on the FAC.

What is shaping up is a new FAC with more financial support and lots of fresh faces: some members will be reinvited, some not, and there will be significant staff presence. Several existing members will have to take their considerable experience to other venues. Staff presence augers very well since innovation is best advanced with conscensus between parents and staff at the FAC level as well as staff support articulating and documenting innovations to their colleagues. From what I have seen of overwhelming nurse and allied professional involvement in family centred care, having some doctors on the FAC would be very positive.

During the more than year long review I met a few of the FAC parents but any more significant work between the FAC and family funds like Sasha's have been put on hold until the new committee emerges. We wish the involved parents and hospital staff success and the timely rebirth of a stronger body so that the vital work of evolving family centred care across Sickkids can continue.