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Study Participants, Developing Quality Measures for Palliative Care

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Open to Fraser – Vancouver Coastal, Interior Region, Patient partners from Fraser Valley & Interior Health regions

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Fraser and Interior Health Authorities are involved in a research project to understand what matters to people when it comes to community-based palliative care and end-of-life services. Patient partners are needed for an interview to help determine what should be measured to capture the quality of these services.

Open to: Patient partners from Fraser Valley & Interior Health regions

Lead Organization or Department

Wilfrid Laurier University

Aim

The aim of this research project is to develop a new set of quality measures for palliative care provided in the community (at home or in a hospice) within the Fraser and Interior Health regions. Patients or care givers will be asked to talk about what is important to them when it comes to measuring the quality of palliative care services and to give feedback on what areas should be measured.

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

  • Experience interacting with palliative care or end-of-life services in the community (for example, palliative home care program) within Interior or Fraser Health regions in the last 12 months
  • Comfortable sharing your experience with an interviewer and/or group
  • Able to communicate in English (translation services are not available)
  • Open to volunteers from Fraser & Interior Health regions
  • Patients need to be at least 65 years of age

Logistics

  • Vacancies: 8
  • Interview date and time to be determined based on availability of study participant
  • Interviews will take place via a web-based meeting (Webex) or a phone call with a member of the research team. One-on-one interviews will be offered as well as group interviews and are expected to take 60-90 minutes.
  • One-time commitment
  • Some people may feel upset when talking about their experiences. If that is the case, support will be provided through the health authority for those who feel that they would like to speak to someone or receive counseling.

Reimbursement

As interviews are via Webex or teleconference, no expenses are anticipated.

Background

The goal of palliative care (PC) is to facilitate and provide optimum quality of life for individuals with a life-limiting illness and their families, and to provide care that promotes dignity, respect and comfort. People usually prefer to receive PC in their homes. However, research has not yet focused on the quality of care that is received in this setting (at home or in hospice). Samples of questions that may be asked include:
  • What do you feel should be measured in order to assess the level of quality provided to clients receiving palliative care?
  • Are there other factors that we have not considered, but you believe are important when thinking about the quality of palliative care services?
Click here for more information on the project

Engagement Leader Contact Information

Kathryn Proudfoot
Engagement Leader, Patient & Public Engagement | Provincial
604.668.8246
kproudfoot@bcpsqc.ca

From Our Community

Layton Engwer

Patient Partner, Sooke

Layton Engwer

PVN helped empower me to make meaningful contributions to Primary Care (PC) locally and provincially.  It also facilitated creation of PC Patient Voices which is focused on PC and provides education support and building on shared experiences.