It was great to have met many of you in Quebec City at the National Conference Of Hospice Palliative Care and to have had the opportunity to share some ideas and develop a plan for collaborative national research as part of the newly formed Canadian Network of Palliative Care for Children (previously known as the Pediatric Special Interest Group).

The small research working group developed the following plan to initiative a research plan for this year's Canadian Institutes of Health Research (CIHR) - Institute of Cancer Research (ICR) request for proposal competition. The ICR, along with several other institutes of health research , recently announced 4 major requests for research applications, which included a theme on Palliative and End of Life Care which has 3 research opportunities:

1. Pilot Project Grants
2. New Emerging Team Grants
3. Career Transition Awards

(for more information - please go to the CIHR website)

The research working group has recommended the following:

1. Develop and submit a request for application (RFA), also known as a letter of intent, for a Pilot Project Grant which is based on clinical research already formulated by group members from across the country, which have already been piloted locally. Potential pilot projects would look to expanding these projects across Canada and include:
   1. Describe the Canadian pediatric palliative care population (based on work started by Kim Widger and Health Canada)
   2. Evaluate the quality of palliative/bereavement care offered by pediatric health care facilities (initial proposals by Kim Widger at the IWK Health Centre in Halifax and Laura Beaune/Bethany Good at Sick Kids)
   3. qualitatively describe the experience of families caring for children with life limiting illness at home (based on work by Lillian Rallison and group at Calgary Health Region)
   4. Transitions in care: (from Roberta Woodgate's work in Winnipeg on transitioning to end-of-life care: from the perspectives of families and from health care professionals).
   5. Communication in palliative care: between and among health care professionals and families (work being done in Quebec ? contact)
   6. Decision making and ethics (from Beverley Antle, Maria Rugg, Christine Harrison at Sick Kids)
   7. Other
2. Develop and submit a request for application for a New Emerging Team Grant (NET). The group recommended that we develop an innovative team that would cross pediatric and adult care, that would be interdisciplinary and that would include health care and community care providers, hospices, volunteers and others. Themes could include: transitions, communication, ethics, etc.

Recommended steps to achieve this plan include:

1. Circulate this memo via the list serve group to seek consensus around research topics and research plan.
2. Seek and formalize individuals/centres who are willing to participate in either or both research initiatives through list serve.
3. Share resources and proposals.
4. Identify persons willing to take leadership roles (e.g PI, co-investigators, collaborators, etc.)
5. Write letters of intent (LOI) for both initiatives (Sharon Baxter from CHPCA has someone who could do this initial writing on our behalf). Pilot Project Grant - Registration is due on August 15, 2003 and full application is due on September 15, 2003 NET Grant - LIT is due on November 1, 2003 and full application is due on November 2003.
6. Confirm persons for writing full application(s).
7. Develop plan for research team to meet/conference.

This is an exciting opportunity and we look forward to developing this research work together,

Sincerely,

Laura Beaune M.S.W, Res. Dip. S.W
Palliative and Bereavement Care Coordinator
The Hospital for Sick Children
Toronto, Ontario