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Because your voice matters.

Patient Partner, Culturally Inclusive End of Life Care Research Team – St. Paul’s Hospital

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Commitment: Long-term

Connection method: Virtual

Open to Provincial Region

Last updated

Volunteer Opportunity:
Learning more about how we can better support a culturally inclusive end of life journey involves learning from those who have lived experience. A research team at St. Paul’s Hospital is seeking two patient family partners to share their perspectives with the hopes of enhancing their research activities and ultimately, patient and family experience.

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Lead Organization/Department
Intensive Care Unit – Providence Health Care (St. Paul’s Hospital)

Aim
• To learn how to provide a space for families, patients, and healthcare providers to recognize dignity, celebrate lives and provide support during the end-of-life process.
• Patient partners provide insight into patient and families experience of the end of their time in a critical care setting, provide feedback on our approach to reaching out to participants and the questions we will ask in interviews.

Level of Engagement
This opportunity is at the level of consult on the spectrum of engagement. The promise to you is that the health care partner will listen to and acknowledge your ideas and concerns, and provide feedback on how your input affected the decision.

Eligibility:
Open to volunteers from across the province who:
• Have experience with end-of-life care and/or critical care and are comfortable sharing their story and perspectives.
• Can meet using Zoom.
• Research meetings are 1 hour and vary from monthly to once every 2 or 3 months. Patient family partners do not have to attend every research meeting but are always welcome.

There will be an informal conversation about the opportunity and determination of the best fit for both patient and health care partners prior to placement.

Logistics
• Number: 2
• Date/Time: To be determined with the patient partner.
• Commitment: This is approximately a 2-year time frame. Date, time, and frequency is flexible to the patient partners. Minimum contact is once every 2-3 months for approximately one hour each meeting.
• Location: Virtual, via zoom.

Reimbursement
No out-of-pocket expenses are anticipated for this engagement opportunity. However, if you meet the eligibility criteria, but have concerns about your ability to participate, please contact Jami Brown- jbrown@bcpsqc.ca to see if support options are available. We are always seeking to better understand and reduce barriers to participation. An honorarium gift card will be given as a thank you for their time.

Background
This project was submitted to the 2021 PHC Practice Based Research Challenge. This research team was awarded the grant and completed the research ethics review. The project initially started this project with two patient family partners, but one partner moved out of province. The team is hoping to invite two more new patient family partners to help advise our research team as we enter the participant recruitment and data collection stage.

This interdisciplinary research team involves direct-care staff who work in critical care at St. Paul’s Hospital. They are conducting a qualitative study, interviewing family members of patients who received end of life care in our hospital. They are aiming to invite participants from diverse cultural backgrounds to learn from their unique experiences. The intent is we will learn how we can provide more culturally inclusive end of life care to the people we serve.

How this idea to study how culture impacts end of life care came about in 2021. Critical Care programs implemented the wishing well project. This was based on other “three wishes project” that has been implemented in other hospitals throughout Canada and the USA. The wishing well project provides an opportunity for the patient and patient’s family to ask for any wishes during their end-of-life experience in the critical care setting. The aim is that these wishes provide a space for patients and families to celebrate their lives and to recognize dignity during such a challenging time and foreign environment like the Intensive Care Unit (ICU) during end of life.

The team understands the importance of connecting as human beings, before getting into the content of our opportunity. Patient partners who are willing to share their experience, and the sensitive nature of the content that will be discussed, there will be resources provided to help with any emotions that may arise. The team understands that you will only share what you are comfortable with throughout this opportunity.

Engagement Leader Contact Information

Jami Brown | BA, MAPC (she/her/hers) Engagement Leader BC Patient Safety & Quality Council 604.510.0449 jbrown@bcpsqc.ca

From Our Community

Laura Klein

Clinical Practice Consultant in Fraser Health

Laura Klein

Seeking the patient perspective doesn’t have to be complicated; it simply entails a commitment to ask and listen. Patient advisors not only bring a valuable perspective but also share original ideas and unique skills. Including the patient and family perspective changes the conversation and aligns the team’s focus towards common goals.