Family Partner Engagement Opportunity for Provincial Pediatric Advance Care Planning Project (pACP)
CALL FOR PATIENT AND FAMILY MEMBER PARTNER(S) OPEN TO SHARING THEIR LIVED/LIVING EXPERIENCE WITH PACP
Canuck Place Children’s Hospice (CPCH) 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 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. CPCH is seeking patient and family member partner(s) open to sharing their lived/living experience with pediatric advance care planning (pACP) for an infant, child or youth (0-19 years of age) with a serious illness to improve these important conversations. We recognize families across BC come with a variety of experiences and all voices are valued.
Canuck Place will provide a safe and supportive online space for families to share their experience of pediatric advance care planning through:
- Allowing for the expression of feelings without fear of judgment
- Providing peer support through family engagement advisor facilitation
- Offering an opportunity to meet families across BC who receive/have received, experienced pediatric advance care planning services.
- Maintaining a safe space that does not identify individuals which families 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.
In addition, we hope to have representation at the session of family members of any combination of the following:
- You can provide the perspective of a family living and managing pediatric serious illness within the BC
pediatric healthcare system
- You are a person who identifies as Indigenous or represents diverse cultural and social backgrounds in
- You are a person who represents pediatric families that support children with neurological
developmental diversity and a serious illness
- You have experience supporting a child who is fragile with an uncertain healthcare journey
- You have experience receiving pediatric palliative care
For participation, a person needs to have access to a computer, familiarity with the use of the Zoom platform
and be able to commit to a two-hour virtual session.
Children and family are at the centre of the care provided at CPCH. We respond to the voices of our patients and families, and collaborate on improving care by working directly with families. This past year, CPCH, through the Family Engagement Coalition, invested in developing a comprehensive Family Engagement Framework to provide guiding principles, goals, opportunities, and processes to support our commitment to collaborative work with families. Partnering with families and acknowledging their living and lived experiences are vital and valuable components to improving our program services. The vision for the framework is to ensure consistent, safe, and respectful engagement with children, youth, and families at CPCH, to fully represent the diverse perspectives and promote continual improvement of pediatric palliative care and services. This opportunity will invite family partner(s) to share their lived/living experience surrounding pediatric advance care planning facilitated by Family Engagement Advisors from CPCH.
Goals of the opportunity are:
- To explore, listen and understand the experiences, issues and needs of children and families
surrounding pediatric advance care planning
- To develop an understanding of how best to have these conversations with you.
- To recognize, acknowledge and integrate the unique perspective and expertise of the child and family.
DATES FOR THE VIRTUAL SESSIONS ARE:
- Tuesday, October 17 | 5–7 p.m.
- Tuesday October 24 | 11 a.m.—1 p.m.
Please note: To participate, you need access to a computer and familiarity with Zoom. Additionally, your commitment to a two-hour virtual session is required.
If you are a adolescent/youth/young adult interested in this opportunity and sharing your perspective living with a serious illness, please see our adolescent/youth/young adult engagement opportunity. If you are a sibling of a child/youth/young adult with lived/living experience of a serious illness and pACP, please see our sibling engagement opportunity.