CERIEL Spring ‘24 Update

By: Avery Beavers


Hello, Kernel Network!

My name is Avery Beavers. I am the Undergraduate Research Assistant on the ‘Conceptual and Empirical Research Integration for Care at the End-of-Life’ project. This Social Sciences and Humanities Research Council Insight Grant-funded research project has been ongoing at the Kernel Network Lab since early 2022.

Our ultimate goal is to bring together philosophical conceptual analysis with qualitative empirical studies to strengthen our knowledge base and inform practical solutions in three areas of end-of-life care.

As you may recall, the project has four phases:

  1. Literature Review / Conceptual Analysis

  2. Empirical Study

  3. Research Integration

  4. Informing End-of-Life Practice

Applied to the three areas:

  1. Intention and Clinical End-of-Life Practices

  2. Personal Autonomy and Dementia

  3. Altruism and Informal End-of-Life Caring

My role within the lab has been mainly assisting with Area 2, which is, again, about personal autonomy and dependence in persons with dementia. I am also co-authoring a sister article that acts as a meta-synthesis / scoping review of the literature on dementia and autonomy to help support our working hypothesis. Once the article is closer to completion, hopefully, there will be a future blog post going into more detail!

Now, back to the project itself! Since we secured funding in July 2022, our team has made significant steps toward completing Phase 1 for all three areas. We anticipate opportunities to get feedback from our collaborators on drafts in each area during the coming months.

Our ethics application for the Phase 2 study for Area 1 is under review. We expect to have the other two applications in by the Fall and to begin the recruitment and interviewing process.

Below is our working timeline for Phase 1 and 2, within the three areas:

June

A1 - Intention:

  • Ethics (Approved) - P2

  • Recruitment - P2

  • Draft Completed - P1

A2 - Autonomy:

  • Draft - P1

  • Study Design (Draft) - P2

  • Initial Revisions - P1

  • Initial Submission - P1

July

A1 - Intention:

  • Interviews - P2

  • Initial Revisions - P1

  • Initial Submission - P1

A2 - Autonomy:

  • Ethics (Draft) - P2

  • Ethics (Initial Submission) - P2

  • Additional Revisions - P1

August

A1 - Intention:

  • Additional Revisions - P1

  • Preliminary Analysis - P2

  • Report (Draft) - P2

A2 - Autonomy:

  • Ethics (Revision) - P2

  • Ethics (Approved) - P2

A3 - Altruism:

  • Study Design (Draft) - P2

  • Draft - P1

September

A3 - Altruism:

  • Initial Revisions - P1

  • Ethics (Draft) - P2

  • Initial Submission - P1

  • Ethics (Initial Submission) - P2

At various points during the past two years, progress was stalled due to turnover on our research team and general busyness. We now have a strong team and are ready to pour ourselves into the next stages of the work.

On that note, we have already made a lot of progress on the project this month, thanks to our amazing research team this Spring!

  1. Andrew Stumpf, Principal Investigator (Philosophy)

  2. Susan Cadell, Co-Investigator (Social Work)

  3. Caley McCarthy, Assistant Lab Manager

  4. Stephanie Levac, Graduate Research Assistant

  5. Erin McKenzie, Graduate Research Assistant

  6. Avery Beavers, Undergrad Research Assistant

  7. Kendra Woollings, Knowledge Mobilization Coordinator

We will be in touch with you all fairly regularly throughout the coming Summer and Fall.

We would also like to thank all of our community members and collaborators for their input and assistance throughout the various stages of this project, as it wouldn’t have been possible without them.

That’s all for now until the next update!

Cheers!


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Reflections on Hope at the End-of-Life