Interviewee, Designing a Framework for Advance Care Planning in BC’s Long-Term Care Homes

Volunteer Opportunity
Help us create a framework to improve the care experiences of long-term care residents and their families! Interviews will be undertaken with patient partners to inform the development of a ‘Theory of Change’ framework for effectively integrating and evaluating Advance Care Planning in BC’s long-term care homes.

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Lead Organization/Department
University of British Columbia, Master of Health Administration Program

Aim
To improve the care experiences of long-term care residents and their families through developing a ‘Theory of Change’ framework for Advance Care Planning in BC’s long-term care homes. A ‘Theory of Change’ is a roadmap that outlines the resources, tools, strategies, and changes that are needed, as well as outcomes that should be measured in order to achieve an overarching goal.

Developing a Theory of Change framework is a process that should always involve the people impacted by the change (“nothing about me without me”). Therefore, this project would like to engage patient partners to participate in developing the framework.

The role of patient partners will be to share perspectives, input, and feedback on the framework development. This will improve the care experiences of long term care residents and their families.

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
Open to patient partners across the province who:
• Have experience with the long-term care system in BC in the past 5 years, including:
– Experience living in a long-term care home;
– Experience supporting or providing care for an individual living in a long-term care home; OR
– Experience as a substitute decision-maker for a family member or a friend living in a long-term care home
• Are comfortable with sharing stories and experiences (one-to-one setting) in relation to Advance Care Planning, and/or substitute decision making.

If you have a strong interest in this work but have not yet completed a PVN orientation and Patient Partner Commitments, are unsure if your experience is a good fit or feel another format of engagement would work better with your availability, please contact Cassy Mitchell.

Logistics
• Number of vacancies:  10
• Date and Time: Each patient partner will participate in two interviews that are 30-minutes to 1-hour long. Interviews will be scheduled during times that work best for the patient partner and interviewer.
– March/April (interview #1): share experiences and input to inform framework development
– May (interview #2): share feedback on the draft framework to inform refinement and improvement
• Location: via Zoom meetings or telephone call in
• Commitment: two interviews from March to May

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 Cassy Mitchell cmitchell@bcpsqc.ca to see if support options are available. We are always seeking to better understand and reduce barriers to participation.

Recognition for time will be provided according to the health care partners’ organizational policies.

Background
The framework is being completed as a part of a capstone project for the Master of Health Administration program at UBC.

The project is being supervised by UBC faculty, Dr. Elizabeth Snow,
PhD, MBA, CE (Credentialed Evaluator).

For the privacy and confidentiality of Patient Partners, the one-to-one interviews will NOT be recorded. All personal information shared will be kept strictly confidential.This project is directly related to the long-term care setting in BC.

The project team would like to acknowledge that speaking about Advance Care Planning and substitute decision making in relation to long-term care can be challenging and triggering. The COVID-19 pandemic has further exacerbated existing issues, and highlighted gaps in the quality of care and care experience for residents and their families. Please let your interviewer know if at anytime you feel uncomfortable, would like to take a break, or stop.

Below are some supportive services that may be helpful:
• Family Caregivers of BC toll-free support line: 1-877-520-3267
– 8:30 am – 4:00 pm Monday, Wednesday, Friday and 8:30 am – 7:00 pm Tuesday and Thursday
– https://www.familycaregiversbc.ca/get-help
• Government of BC: Virtual mental health supports & free or low cost counselling https://www2.gov.bc.ca/gov/content/health/managing-your-health/mental-health-substance-use/virtual-mental-health-supports#counselling
• Free, affordable community counselling services: https://caibc.ca/ccfprofiles/

Glossary:
• Theory of Change: A roadmap that outlines the resources, tools, strategies, and changes that are needed, as well as outcomes that should be measured in order to achieve an overarching goal.

• Advance care planning: A process of:
– thinking about your values, beliefs, and wishes for future health and personal care, and
– sharing them with the people you trust.
It can include choosing who would make care decisions for you if you cannot (a.k.a. your substitute decision maker). Advance Care Planning can help you get the care that’s right for you, even if you’re incapable of speaking for yourself

• Substitute decision maker: A person who makes medical decisions and provides consent for treatment or withdrawal of treatment on behalf of another person when they are incapable of communicating their wishes on their own. In BC, this person might be known as a Temporary Substitute Decision Maker, Representative, or Committee.

Health Care Partner Contact Information

Cassy Mitchell
Engagement Leader, Patient and Public Engagement | Provincial
250.279.o717
cmitchell@bcpsqc.ca