Overview - Fil Nalewajek
The 1st pediatric special interest group meeting occurred during the 1999 National CHPCA Conference in London ON and created no interest and little follow-through. It now generates national and local interest to include pediatric palliative care in the government agenda.
Future - Sharon Baxter
CHPCA recognises the need for promoting pediatric palliative care both through the Association and at a political level. Canadian Institute of Health Research (CIHR) has secured between $9 - 15M for palliative care research. A Letter of Intent must be submitted by August 15, 2003. There also exists the prospect of proposal submissions for small group priorities. Participating in this opportunity has the potential to mobilize a collective body of palliative care work, shared resources, policy etc.
CHPCA will assist this pediatric special interest group at a national level by contributing resources in writing the final draft of the CIHR Letter of Intent. Web site links from CHPCA home page to the pediatrics special interest group and other relevant links are possible. All information can quickly be posted. Fundraising possibilities specific to pediatrics also exits under the CHPCA umbrella.
Naming the CHPCA Pediatric Special Interest Group - Mike Harlos
Consensus was reached that this special interest group would officially be called the Canadian Network of Palliative Care for Children. The Group discussed the use of Network vs. Association agreed "Network" was less formal and had less legal emphasis thus allowing a clearer relationship to the CHPCA and provided better positioning for funding requests.
The purpose of the web site is a list serve for health professionals. The primary focus is working towards a collective call to all colleagues to become a true network. A future goal would be to expand the network to include international health care professionals. As the web site expands it may become more broadly tailored towards families, patients and teens, however at this point it would appear that the Canadian Virtual Hospice is filling that role.
Plans to include a French version of the website were recommended, and volunteers to assist with language translations are requested.
A communications company has committed to begin providing pro-bono work to map out marketing and communications plans and assist with organizing and branding the Network.
Terms of Reference - Fil Nalewajek
All were encouraged to read the handout Executive Committee Terms of Reference and respond to Sharon Baxter at CHPCA with feedback. Anyone wanting to forward their name for consideration as an Executive Committee member should contact Sharon in writing with a brief bio and their intent. Membership is not limited solely to health professionals but rather should reflect all integrated aspects of spiritual care, volunteers and parents, etc.
Look to the Web site for the posting of revised Terms of Reference and ongoing information that results from the Executive Committees teleconference meetings.
Health Canada - Sandra St-Germain
The role of the federal government in the palliative health care movement was explained. All were invited to attend Sandra's "Brown Bag Lunch" session for an in-depth discussion on the Canadian Strategy and the 5 Working Groups or consult the handout in the registration kit for a better understanding of the role of Health Canada and the Secretariat on Palliative and End-of Life Care.
Sandra offered her services to the Network of looking over and helping with their intended CIHR proposal and Letter of Intent.
SMALL GROUP DISCUSSIONS AND REPORT BACK - Laura Beaune
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National Pediatric Palliative Care Survey
Purpose:
To compile survey results from a broad network of pediatric caregivers and professionals
Proposed Goals of the Survey
- survey previously done by CHIPPs gathered basic data (eg. Populations, services) had limited distribution to their members only
- define who is doing any component of palliative care and how can we communicate and link with those providers
- to communicate
- want to connect with diverse groups with a common interest in pediatric hospice palliative care (e.g. CPS, networks, professional organizations, adult palliative care, government/Ministries, provincial link, individuals, bereaved families, clinicians)
- multi-module formulas to meet unique needs using written/verbal/phone methods
- representative to see destination of pediatric palliative care in the broad scope
PLAN OF ACTION
- review results from previous studies looking at what worked, what didn't etc.
- request permission to share information
- follow-up on information critical to introduce this survey with information of the Network and how it can help them
- identify provincial champions with strong networking that can effectively promote the survey
- who survey is returned to (eg. Provincial champion vs. CHPCA) is important to reflect personal attachment and promote a desire to participate
- strategize on survey information with statistician
Survey Members
-
National Norms of Practise, Standards of Care and Guidelines for Practice
- Discussion of the uniqueness of cultural, psychological and spiritual care and the need to nave these delineated in the principles and norms of practice.
- Group agreed that norms and principles need to be based on literature/evidence. Group members agreed to edit/compare the BC and Toronto document providing feedback and supporting the writing with available evidence literature.
- Plan to place Toronto norms/practice document on the CNPCC network
- Discussed the added element of bioethics in the Toronto document and discussed need for feedback from the group regarding review/editing.
- Should a national document be concise or detailed? The group felt a document might best include detailed norms and practices as well as a summarized form for quick review.
- Norm and principles need to be "timeless" Principles/norms need to continue (i.e. specifics of drugs too detailed for a national document)
PLAN OF ACTION
- Continued discussions though shared emails
Standards Members
- Lillian Rallison
- Christina West
-
Research Opportunities
Research Members
- Gerri provided an overview of the CIHR grant offers research options in the areas of pilot projects, New Emerging Teams (NET)and career transition.
- Participants described their or their team's research interests:
| Nicole |
CHSR - Communication - HCP and families in home care |
| Peter |
- CoG - Ketamine evaluation - pain out comes in children with cancer.
The study was discontinued, as it proved too complicated.
- Spirituality study
- Evaluation/satisfaction of home care end-of-life, HSC Foundation
|
| Thérèsa |
Medication errors/surveillance |
| Kim |
- Quality of care and services
- Database description
|
| Laura/Bev |
- End-of-life decision-making
- Quality of care
|
Other members had also sent in their research interests, which were compiled in a list.
The group tentatively agreed to pursue 2 grants: Pilot Project and a Net Grant. The Net Grant could be in combination with adult palliative care providers, community providers and paediatric centres around common themes such as transitions, communication or ethics for example. Questions around whether CIHR grants support protected research time for PI's/clinicians were raised.
PLAN OF ACTION
- Find out list of potential research questions to incorporate into this Pilot Project - Laura will circulate
- Share discussion emails within this group and others on list serve - Laura will circulate
- Phone conference with Executive Committee to establish direction
Summary Key Priorities and Strategies / Next Steps - Fil Nalewajek
- August 15 - Letter of Intent for CIHR Pilot Project funding
- Fall 2003 - Survey Committee will compile draft survey
- November 1 - Net Grant
- Gerri Frager will assume the facilitator role of posting CIHR info on the web site
- Norms of Practice Committee will continue email discussions towards a national consensus
- List serve discussions will occur in your language of preference without the aid of formal translations
