Canuck Place Adolescent/Youth/Young Adult Engagement Opportunity for the Provincial Pediatric Advance Care Planning Project

Canuck Place Children’s Hospice along with Child Health BC, Children’s and Women’s Indigenous Health, Perinatal Services BC and BC Children’s Hospital are working together for a provincial approach to pediatric advance care planning (pACP). This is a two-year Ministry of Health priority project. The goal of the project is to improve the delivery of pACP services for children/youth/young adults with a serious illness and their families throughout British Columbia. This first engagement opportunity will aim to explore, listen and understand the experiences, issues and needs of adolescents/youths/young adults surrounding pACP; to develop an understanding of how best to have these conversations with you; and to integrate your unique perspective and expertise of living with a serious illness. Findings from this opportunity will inform future working groups and opportunities for further collaboration to meet needs expressed in relation to pACP. Dates of sessions are Dates for the session are Monday October 23rd 4pm-6:00pm PST and Thursday October 26th 4pm-6:00pm PST. The sessions will be 2 hours, facilitated virtually by a peer engagement advisor and Canuck Place counsellor.

Definitions
Serious illness: condition that impacts life and daily functioning with unknowns about the future and/or condition that can be difficult to manage in symptoms, treatments or family stress.
Pediatric advance care planning (pACP) are ongoing conversations between children, their families and their healthcare providers to explore and understand the values, beliefs and wishes of the child and family. This conversation supports shared decision-making when a child’s health condition is fragile and/or future planning for the care of the child if their health condition were to worsen.

What we aim to support when participating:

We recognize adolescents/youths/young adults across BC come with a variety of experiences and all voices are valued. Canuck Place will provide a safe, confidential and supportive online space for you to share your experience of pediatric advance care planning through:
• Allowing for the expression of feelings without fear of judgment
• Providing peer support through young adult engagement advisor facilitation and CPCH counsellor
• Offering an opportunity to meet adolescents/youths/young adults across BC who receive/have received, pediatric advance care planning services.
• Maintaining a safe space that does not identify individuals which adolescent/youth/young adults can share as much as they chose to about their experiences
• Offering opportunity to debrief and access follow-up support if identified following the session.

We hope to engage adolescents/youths/young adults who represent different experiences, care populations and demographics. If interested in participating in this opportunity or you wish to learn more about this engagement session, please contact familyexperience@canuckplace.org by Wednesday October 18th, 2023. We look forward to hearing from you – your voice matters!

If you are a family member interested in this opportunity and sharing your perspective of supporting your child/youth/young adult with a serious illness or a sibling of a child/youth/young adult with a serious illness, please see our family partner engagement opportunity or our sibling engagement opportunity https://www.canuckplace.org/resource-hub/family-engagement-opportunities/ .

Canuck Place Engagement Opportunity for Youth

Level of Engagement

This opportunity is at the level of Collaborate on the IAP2 Spectrum of Public Participation.

Eligibility

• Willing & comfortable to share health care experiences in a group setting
• Specific health care experiences [details below]
• Have access to technology and the internet to participate in the engagement opportunity
• Comfortable using technology to attend online/virtual meetings
• An interest in improving health care services
• The time to participate in the engagement opportunity
• Canuck Place Children’s Hospice (CPCH) is seeking adolescents/youths/young adults managing a serious illness in British Columbia who are open to sharing their experience with Pediatric Advance Care Planning (pACP). In addition, we hope to have representation of the following: • You may also be a person who identifies as Indigenous or represents diverse cultural or social backgrounds in British Columbia • You may also be a person with neurological developmental diversity and a serious illness • You may also be living with a condition with an uncertain future • You may have experience receiving pediatric palliative care

Patient Partners ARE NOT required to be PVN members to participate in this engagement opportunity.

Health Care Partner Contact Information

Dana Warbuton
Family Engagement Advisor, Professional Practice | Canuck Place Children's Hospice
(778) 792-5570
familyexperience@canuckplace.org