Caregiving and Work

We’re doing something a little bit different! We’re taking a shot at making video along with the podcast! You can watch this episode on our YouTube channel, or as always, you can listen in your favorite podcast app.

This episode has two parts. We’re first going to feature a short talk Jennifer gave at the Canadian Caregiving Summit in Ottawa a few weeks ago, which was specifically focused on her experiences as an extreme caregiver, trying to earn a living.

After that short recording – which is about 10 minutes – tune in to Jennifer and Emily’s conversation about advocacy, policy, and choice.

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In this episode:

00:00 What to expect in this episode
01:20 Jennifer’s experience as an extreme caregiver
02:20 Right to flourish, caregiving through a bioethics lens
03:34 Caregiving and choice
04:38 Disability is seen as a personal or family tragedy
05:18 Accessing and managing support can be burdensome
06:09 Extreme caregiving has an opportunity cost
06:51 Financial precarity and gender
08:09 What does society prefer to support?
08:50 Caregiving as unpaid labour keeps caregivers in financial dependency
10:01 Policy considerations and conclusion of talk
11:11 Jennifer and Emily have a candid discussion!
15:18 Advocacy vs. organizational agendas
16:59 Caregiving can be fulfilling and also has a cost. Extreme caregiving is rarely a choice
18:47 How do we differentiate between regular parenting/caregiving and ‘extreme’ caregiving?
27:06 The amount of work that goes into managing and administering everything that goes along with extreme caregiving
29:04 Putting some choice back into challenging circumstances
35:35 Moral arguments for policy makers
36:53 Caregiving policies potentially impact everyone
40:29 Navigating care responsibilities as a family or partnership
44:53 “Performing” for therapists
46:39 Shared decision-making and patient/family priorities
49:18 Jen and Emily reflect on how little they’ve talked about Jennifer’s experiences with Owen
51:14 Jen and Emily acknowledge that caregivers don’t all have the same opportunities, experiences, or perceptions

“How did we do?” : A debrief on the role of Lived Experience Advisors in a healthcare research project

What exactly is the best way to engage patients in a healthcare research project? Well, it’s hard to say definitively. Funders like CIHR often require patient involvement, but very little direction is provided beyond general frameworks and guiding principles. Often project teams just have to sort things out on their own. So we were curious to find out how this one particular healthcare research project handled it. 

The details of the project are not really what this episode is about. Instead, our intention is to showcase a number of different perspectives about the use of patient partners within a federally funded healthcare research project. You’re going to hear from two of the project’s researchers (PI Dr. Noah Ivers and Celia Laur), two patient partners (Barbara Sklar and Michael Strange) – they actually call themselves Lived Experience Advisors, or LEAs – and our very own Emily Nicholas Angl, who helped to bridge communication between the two groups.

In this episode:

00:17 Why Jen is hosting solo
01:06 About this research project
02:05 What’s an ”innovative clinical trial”?
04:00 Dr. Noah Ivers’ research objectives
06:15 Why this project was complex
09:34 Should patient partners do more technical work?
10:42 What are we asking patients to do?
13:20 Barbara: Engaging patients is like the Wild West!
15:57 Michael: Sharing my experience may help someone
18:03 Barbara: Engaged patients are like liaisons
20:01 Patients should do what interests them
21:28 Reflecting on constraints
22:29 Barbara: Patient advisors should not be ”partners”
24:41 Figuring things out as they go
25:44 What did the Advisors actually do?
30:34 Michael: Opioids are not inherently bad
32:24 Barbara: I get a lot of benefit from being an LEA
35:03 Reflections on Emily’s role, as Lead Advisor
38:08 Who decides what’s relevant (re patient input)?
39:05 Why research teams might want a Lead Advisor
40:29 Are there areas where patient input is less relevant?
43:01 Jennifer interviews Emily!
01:07:35 Ending and credits

About the research project:

The project (the results of which are not yet published) is an “innovative clinical trial“, which means that it uses methods alternative to more traditional randomized controlled trials. The research had two streams, both related to primary care – one focused on prescribing opioids, and one on prescribing antibiotics. Both of these are areas where there can be serious impacts at the individual patient level, but also in terms of public health more broadly. And particularly with opioids,. defining exactly what appropriate prescribing looks like is really tricky. And primary care physicians aren’t always aware of, or maybe just aren’t following, the most recent evidence-based guidelines. So this project explored if and how some specific interventions could shift prescribing behavior towards established best practices.

We will continue to update the links below as publications and further information becomes available. 

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Spring Update 2023: Checking in with Jen and Em

It’s been a while since we’ve published an episode!  We have lots on the go these days. Come hang out with Jen and Em as we wrap up the Health Policy series and share what’s next.

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Contact us to book an exploratory conversation about how podcasting can support community outreach and knowledge mobilization! Email us at mattersofengagement@gmail.com

Health Policy Series: Beyond Mandates – The Essential Input of Residents in Long-term Care Policy

A widely-held assumption is that all residents of Long-term Care (LTC) homes are frail, elderly and in need of sweeping protections as determined by government, policy-makers and LTC home management. The reality, however, is that residents of LTC homes comprise a diverse demographic and have a wide range of needs, interests and concerns. And across the spectrum of needs, residents have a strong desire to participate in key decision-making processes. Instead, they are often excluded. 

To help address the diversity of needs and interests, resident populations in each home are represented by provincially mandated Residents’ Councils. Each home has a Council (made up of residents who are interested and capable of participating) that convenes monthly and is tasked with collecting the feedback of residents, which ultimately is supposed to inform LTC home policy and management. However, there are many potential barriers to these Councils performing effectively and meaningfully. 

This is where the Ontario Association of Residents’ Councils (OARC) comes in. The OARC supports local Residents’ Councils to communicate and perform with more impact, and also works to amplify the voices and interests of LTC residents at provincial policy-making tables. 

Two of our guests, Gale and Devora, each live in a Long-term Care home in Ontario and are vocal advocates for giving residents a more meaningful voice in the development and application of policies that affect them and their co-residents.  Gale and Devora lead their own local Residents’ Councils and are active members within the OARC. Our third guest, Dee Tripp, is the Executive Director of the OARC.

In this episode, we discuss the realities of living in Long-term Care from residents’ perspectives, and the impact of living with policies and restrictions they may not have had a say in making.  We also talk about what needs to change in order for residents’ voices to become better integrated into LTC policy-making.

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This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca

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Health Policy Series: Critical Reflections on Public Engagement

We’re bringing conference vibes to the podcast and presenting a short series of critical work on public engagement from members of the Public Engagement in Health Policy team.  We noted themes of: community exclusion from formal engagement processes; misalignment of goals; questions of legitimacy; and challenges of conducting community-engaged research in institutional settings. 

We already published the keynote from Dr. Jamila Michener on Transformative Engagement – and in true conference fashion, we’re also sharing our roundtable breakout discussion with researchers Katie Boothe and Alana Cattapan! 

Featuring excerpts from presentations recorded at this conference, Reimagining public engagement in a changing world:

  • ‘If we don’t do it, who will’? An exploration of Black community agency in health policy and advocacy in Ontario – Dr. Alpha Abebe and Rhonda C. George, McMaster University
  • Engaging deliberately: Exploring deliberation in two Canadian health systems – Joanna Massie, McMaster University
  • The Epistemic Injustices of Public Engagement: When nothing is done to meet the demands of Nothing about Us without Us! – Dr. Genevieve Fuji Johnson, Simon Fraser University

Followed by (the more interesting parts of!) our actual conversation with Katherine (Katie) Boothe (Associate Professor at McMaster in the Political Science department and a team member in the Public Engagement in Health Policy Project) and Alana Cattapan (Canada Research Chair in the Politics of Reproduction and Assistant Professor in the Department of Political Science at the University of Waterloo). We debrief on conference themes, share critical reflections and occasionally complain about the state of funding and support for community-engaged research. 

If you’re interested in critical work on public engagement, this episode (along with the Dr. Michener’s keynote) is an excellent summary of a stellar conference!

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This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca

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Health Policy Series: Transformative Public Engagement: Pitfalls, Possibilities and Promise – keynote by Dr. Jamila Michener

On September 22, 2022, the Public Engagement in Health Policy project team at McMaster University hosted a one-day conference, Reimagining public engagement in a changing world. Community members, engagement practitioners, researchers, and policymakers gathered virtually and in person to discuss the opportunities and pitfalls of public engagement and to envision a way forward. Attendees explored questions such as, what does it mean to engage with communities ethically? How can researchers use new approaches to engagement to tackle contemporary health policy issues with communities? And what are the roots of mistrust between communities and researchers/policymakers? 

The day opened with Dr. Jamila Michener, Associate Professor of Government and Public Policy at Cornell University. In her keynote presentation, she shared enriching insights on public engagement at the intersections of power, poverty, public policy and racism. Transformative and impactful public engagement continues to be hindered by a range of problems from insufficient resources to structural disincentives. Research must not only seek to avoid tokenism, to meaningfully create space for people to participate; it must also be reflexive. Researchers have a critical role in radically transforming engagement by understanding how their positionality affects their work. They should begin their work by asking: who am I, what are my values, what is my position and role? This reflexivity is essential as it shapes the very research questions we ask and our rationale for engaging with communities. It is from this intersectional lens that Dr. Michener proposed the values of equity, dignity, and democracy as anchors for ethical public engagement. 

– Excerpt from a blog post written by Joanna Massie, Roma Dhamanaskar, and Rana Saleh 

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This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca

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Health Policy Series: Understanding Legitimacy in Public and Patient Engagement, with Katherine Boothe

What makes an engagement process legitimate?  How do technical experts feel about engagement, and how have their ideas of legitimacy changed over time?  These are just some of the questions we explore with our guest, Katherine (Katie) Boothe, Associate Professor in the Political Science Department at McMaster University.

A recent paper of Katie’s,  “Redefining Legitimacy in Canadian Drug Assessment Policy? Comparing Ideas Over Time” seeks to understand how and when people’s ideas of legitimacy change when lay members are added to otherwise ‘expert only’ committees. In this case, the context is Canadian drug assessment advisory committees, where a group of technical experts and lay members help to determine what pharmaceutical drugs should be covered by public drug insurance policies. 

Join us for this fascinating conversation exploring how public and patient engagement challenges pre-existing standards of what constitutes “good” scientific evidence, and how (unarticulated) differing rationales and goals for engagement can lead to frustration and disappointment. 

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This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca

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Health Policy Series: Deliberation, Democracy and Public Engagement, A Conversation with Kim McGrail

Kim McGrail is the Scientific Director of Health Data Research Network, a CIHR funded initiative whose work in the health data space has implications for, well, everyone living in Canada. And they’re keen to involve the public not just in getting input, but in providing guidance into key decisions.  HDRN’s work is both technical and somewhat conceptual: their aim is to support researchers to better access health data for research from multiple sources and regions, while respecting local, regional and Indigenous rights, cultural practices and laws.

Public engagement in this context may seem straightforward, but it’s hardly so. In this episode, we talk through some of HDRN’s challenges and opportunities related to understanding public concerns related to collection, use and sharing of health data.  Although we touch on some of the operational and technical details of HDRN’s work, our primary focus is on the use of deliberation as an engagement approach.  And how it’s difficult to talk about engagement at a pan-Canadian level without also considering democratic ideals and how we might navigate living together as a diverse society.

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This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca

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Health Policy Series: The Business and Politics of Engagement, with John Perenack of StrategyCorp

In previous episodes we’ve talked a lot about high-level rationales for engagement, like democratic principles and moral or ethical obligations. But we haven’t really got into some of the operational nuts and bolts, like the fact that there’s a whole fee-for-service industry out there – agencies hired by healthcare organizations to support engagement strategy and activities.

Join us for this behind-the-scenes look at what engagement-for-hire looks like. What is the work that’s involved? And how does a strategic consulting firm advise on or think about engagement?  Is any of this actually useful or meaningful, or does it only fulfill some kind of strategic or tactical purpose? 

We attempt to get to the bottom of these questions with John Perenack, of StrategyCorp.  John is a communications specialist who often supports clients in developing public and stakeholder engagement strategies and activities.  We’re excited to bring you this fascinating and illuminating conversation!

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This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca

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Health Policy Series: Black Communities, Medical Mistrust and COVID Response, with Alpha Abebe and Rhonda C. George

In this episode, we continue our conversation with Alpha Abebe and Rhonda C. George!  (Haven’t heard the first conversation yet? Listen here!) This time, we talk about Black communities’ response to COVID, and public health response to Black communities.

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During a public health crisis is the exact wrong time to try and build relationships and trust with communities who have not historically been included in health policy decision making, and whose health and health care needs continued to be neglected. But this, of course, doesn’t mean that Black communities didn’t recognize both the real danger posed by COVID, or their own tenuous connection to mainstream health services. Alpha and Rhonda share how leaders of Black-led organizations rallied to address community needs during COVID, and discuss the importance of supporting Black communities to build capacity and resilience for the future. 

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Alpha Abebe is an Assistant Professor in the Faculty of Humanities at McMaster University, and Rhonda C. George is a PhD candidate in Sociology at York University. They’re both researchers with the Public Engagement in Health Policy Project.

This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca

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