Interviewee and Focus Group Participant, The Advance Care Planning for Dementia Project

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Advance Care Planning (ACP) is a way that helps you and those closest to you prepare to make health care decisions aligned with your wishes. It involves talking with others about your future health care wishes and deciding who can make health care decisions for you if you cannot do so. Adapting community-led education and supports for ACP to the unique needs of people with lived experience of dementia takes a gentle hand and heart. A team at the BC Centre for Palliative Care (BCCPC) wants to speak with those who have experience to share and are interested in helping guide the development of this model.

Open to: Patient partners across the province

Date
20200531

Volunteer Opportunity

Advance Care Planning (ACP) is a way that helps you and those closest to you prepare to make health care decisions aligned with your wishes. It involves talking with others about your future health care wishes and deciding who can make health care decisions for you if you cannot do so. Adapting community-led education and supports for ACP to the unique needs of people with lived experience of dementia takes a gentle hand and heart. A team at the BC Centre for Palliative Care (BCCPC) wants to speak with those who have experience to share and are interested in helping guide the development of this model.

Lead Organization/Department

The BC Centre for Palliative Care – Advance Care Planning for Dementia Project

Aim

The Advance Care Planning for Dementia Project aims to mobilize and equip community-based organizations to promote awareness and support for person- and family-centred care for people living with dementia and family/friend caregivers. The project will be adapting existing BCCPC’s community-led advance care planing interventions and toolkits for the context of dementia. The role of patient partners will be to share their perspectives on the adaptation process and provide feedback on the adapted materials produced.

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 patient partners across the province who:

  • Are living with early symptoms of dementia (may or may not be formally diagnosed) or a current family member/ friend/care giver of a person living with dementia.
  • Are comfortable speaking online via teleconference or over the phone.
  • Have access to an email address to receive preparation materials and updates.

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 Cassy Mitchell.

Logistics

  • Vacancies: 24
  • Date and Time: A one-on-one interview will take place in May to share perspectives on the adaptation process and one to two focus group sessions will then take place in July/August to share feedback on the adapted materials produced. Patient partners may choose to participate in one or all sessions. Exact date and time will be dependent on the availability of patient partners and each interview/focus group session will be no longer than one hour.
  • UPDATE: We have completed interview recruitment for caregivers to participate in April/May but are still looking for:
    • individuals living with dementia to participate in the interviews in May
    • individuals living with dementia and current caregivers to participate in the focus groups in July/August
  • Location: Online via teleconference or over the phone
  • Commitment: One week to six months

Reimbursement

No costs are anticipated: a toll free teleconference number will be provided to patient partners who do not have access to online teleconferencing.

Background

The Advance Care Planning for Dementia Project has provincial scope and is funded by the Public Health Agency of Canada. Other partners include Alzheimer Society of BC​, Family Caregivers of BC​, and United Way of the Lower Mainland.

The goal of the project is to mobilize and equip community-based organizations to promote awareness and support for person- and family-centred care for people living with dementia and family/friend caregivers through engagement in advance care planning. The project will be collaborating with community-based organizations to develop, implement, evaluate and spread a package of advance care planning interventions tailored for the context of dementia.

Due to the current situation with COVID-19, all consultations with patient partners during development of the package of advance care planning interventions will be conducted remotely via teleconferencing or phone. Interview questions will be provided ahead of time. Participants are welcome to invite a family member, friend, or supportive partner to be present during the interviews and focus group sessions.

Learn more about BCCPC.

Interested?

Open to patient partners across the province

If you have additional questions about this volunteer opportunity, please contact:

Cassy Mitchell
Engagement Leader, Patient and Public Engagement | Northern Interior
250.279.0717
cmitchell@bcpsqc.ca

Deadline
May 31, 2020