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Because your voice matters.

Patient Speaker, Implantable Cardioverter Defibrillator Education Sessions

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Open to Fraser – Vancouver Coastal, Patient partners in Lower Mainland & Fraser Valley

Last updated

We’re looking for patient partners who have an Implantable Cardioverter Defibrillator to help develop and speak at education sessions for patients and their families who have been referred or recommended to have this defibrillator implanted. Help us provide support and answer questions so that patients have a better understanding and informed consent before implantation!

Open to: Patient partners in Lower Mainland & Fraser Valley

Lead Organization or Department

St. Paul's Hospital, Cardiology

Aim

St. Paul's Hospital and Vancouver General Hospital are developing a monthly, one-hour education session that would be offered to individuals and their families who have been referred or recommended to have an implantable cardioverter defibrillator (ICD) implanted. Each education session will be facilitated by the Clinical Nurse Specialist and patient-partner and the presentation will be delivered by the nurse or device technician. We would like a patient partner to ensure the presentation is developed in lay language and appropriately addresses the needs of the attendees and have them attend to answer questions and share their experiences.

Level of Engagement

This opportunity is at the level of involve on the spectrum of engagement. The promise to you is that the health care partner will involve patients in planning and design phases to ensure ideas or concerns are considered and reflected in alternatives and recommendations.

Eligibility

  • Has an ICD. A family member who has supported you would be welcome to accompany you.
  • Is comfortable telling their story and/or sharing experiences of getting their ICD and living with it.
If you have a strong interest in this work but have not yet completed a PVN orientation and volunteer agreement, are unsure if your experience is a good fit or feel another format of engagement would work better with your availability, please contact the engagement leader directly.

Logistics

Number of vacancies: 2-3 They are currently developing the content for the session and would like feedback from the partners before the sessions start. Providing feedback and review of the presentation could be by email or phone. If patient partners are interested, there is an opportunity for you to speak for 5-10 minutes during the session about living with an ICD. The health care partner will work with you in advance to shape your presentation. The education sessions will be held in a meeting room of St. Paul's Hospital. To pilot this project, a tentative schedule has been set for: Tuesday, October 30th, 1900 - 2000 Tuesday, November 27th, 1900 - 2000 Tuesday, December 18th, 1900 - 2000 Tuesday, January 29th, 1900 - 2000 We would hope that the patient partner(s) recruiting for this opportunity could attend at least two sessions but would be welcome to attend as many as suit their schedule.

Reimbursement

Expenses related to travel (e.g. transit, parking up to $18/day, approved mileage up to 60 km each way) to attend meetings will be reimbursed by Providence Health Care.

Background

Literature has shown that providing adequate information and care options about ICDs in a timely period before implantation (including lifestyle changes and daily activities) contributes to an informed decision-making process. Although providing written and online education resources are beneficial to patients’ knowledge, individualized care and education can be provided by in-person teaching and dialogue with care-providers and other ICD recipients. In providing an education session, our objectives are for individuals (and social support person) to have an increased knowledge and understanding of an ICD, help individuals feel confident in their decision to proceed with ICD implantation and understand the implications and potential lifestyle changes associated with an ICD. This initiative is supported by the Heart Rhythm Program Electrophysiology physicians at both Vancouver General Hospital and St. Paul's Hospital and is being led by the program Clinical Nurse Specialist (CNS). Each education session will be facilitated by the CNS and patient-partner and the presentation will be delivered by the nurse or device technician.

Engagement Leader Contact Information

Karen Estrin
Engagement Leader, Patient and Public Engagement | Lower Mainland & Sunshine Coast
604.668.8245
kestrin@bcpsqc.ca

From Our Community

Christine Wallsworth

Patient Partner, Vancouver

Christine Wallsworth

Patient and family partners should not be a check box on research proposals! They need to be involved right from the start. I know patient and family partners are doing their part by providing their knowledge to researchers from their lived experience.  It’s a win-win for us to work together through PVN to make sure our input drives improvements.