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Focus Group, Working Group and/or Advisory Group Participants, Advance Care Planning in Chinese and South Asian Communities Project

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

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Seeking members of the Chinese and South Asian communities to join the Advisory Committee, Working Groups or Focus Groups for our project to adapt public Advance Care Planning Education for these communities. Provide your input to make sure that the adapted education serves the needs of these communities!

Open to: Patient partners in the Lower Mainland

Lead Organization or Department

BC Centre for Palliative Care - Public Health Initiatives

Aim

This project aims to improve Advance Care Planning uptake by the Chinese and South Asian population in BC. We have previously developed community-based education for English speakers, and this project will translate and adapt this for members of the Chinese and South Asian communities, including people who speak Cantonese, Mandarin and Punjabi. We are seeking patient partners who are members of these communities to provide us with input and feedback on the adaptation by participating as Advisory Committee Members, Working Group Members and/or Focus Group Attendees.

Level of Engagement

This opportunity has three components: The Advisory Committee and Working Group are at the level of collaborate (at a local community or program level) on the spectrum of engagement. The promise to you is that the health care partner will look to you for advice in decision making, developing alternatives, and solutions and include your recommendations into the decision as much as possible. The Focus Group 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

We are looking for members of Chinese and South Asian communities who:
  • have experience  of being affected by serious illness, frailty or chronic medical conditions, as a patient, family member, caregiver or another role.
  • are fluent in English (spoken and reading/writing)
Fluency (spoken and reading/writing) in Mandarin, Cantonese or Punjabi is an asset. For the Advisory Committee, experience with project/committee proceedings an asset. For the Working Group, experience with education/community development an asset as well as previous experience adapting materials/activities for Chinese or South Asian communities.

Logistics

Vacancies: up to 26 Advisory Committee Member - participate in the Advisory Committee that will oversee the direction and progress of the project. There will be 4 meetings per year, with one meeting per year in person in New Westminster. The Advisory Committee will meet until March 2021. Looking for one participant per community. Working Group Member - participate in a working group that is conducting the adaptation activities. There will be 8 working group meetings, to be held in person in New Westminster. Meetings will be held between now and September 2020, with 5 between now and December 2019. Looking for one to two participants per community. Focus Group Member - participate in one or two one-day focus group sessions in September 2019. Focus group sessions will be held in person in New Westminster. Looking for up to 10 participants per session per community.

Reimbursement

Travel expenses to attend meetings will be reimbursed for all public partners including mileage up to 60 km each direction and transit tickets (note: parking is free at the office). These expenses will be reimbursed promptly following the meetings. Food/Drink will be provided for all in-person meetings.

Background

Advance Care Planning is a process that supports individuals and their families to prepare and make decisions about their future health care. It involves understanding and sharing their values, beliefs and wishes regarding health care. This information is used during conversations with health-care providers about the treatments they receive, to help them get the care that’s right for them. The initiative is supported by funding from Health Canada’s Health Care Policy Contribution Program. The views expressed herein do not necessarily represent the views of Health Canada. The project has two independent but related objectives: - Adapt and spread a model of community-based education about Advance Care Planning for British Columbians with a Chinese or South Asian background - Develop and spread an online training module for healthcare providers to help them learn how to have Advance Care Planning conversations with patients from a Chinese or South Asian background. Other project partners will include community organisations working with the Chinese and South Asian communities, Advance Care Planning experts, Education Experts, and experts in aspects such as communications and graphic design. The community education that will be adapted involves public information sessions hosted by community organisations and facilitated by volunteers (peer-facilitators). Materials include a training curriculum for the peer-facilitators, and a toolkit of resources for the community organisations, peer-facilitators and public participants. Draft Terms of Reference are available for the Advisory Committee and Working Group. For more information about BCCPC, please visit https://www.bc-cpc.ca/cpc/

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.