Palliative Care Advertising Creatives Quality Validation and Understanding the Views of Caregivers/Family

Prepared for Health Canada

Supplier name: Earnscliffe Strategy Group

Contract number: CW2328538

Contract value: $76,415.12

Award date: August 29, 2023

Delivery date: November 2, 2023

Registration number: POR 034-23 (HC 23-04)

For more information on this report, please contact Health Canada at:

hc.cpab.por-rop.dgcap.sc@canada.ca

Ce rapport est aussi disponible en français.

Palliative Care Advertising Creatives Quality Validation and Understanding the Views of Caregivers/Family

Research report

Prepared for Health Canada

Supplier name: Earnscliffe Strategy Group

November 2023

This public opinion research report presents the results of focus groups conducted by Earnscliffe Strategy Group on behalf of Health Canada. The qualitative research was conducted in October 2023.

Cette publication est aussi disponible en français sous le titre : Validation qualitative des créatifs publicitaires pour les soins palliatifs et la compréhension des points de vue des aidants non rémunérés et de la famille

This publication may be reproduced for non-commercial purposes only. Prior written permission must be obtained from Health Canada. For more information on this report, please contact Health Canada at: hc.cpab.por-rop.dgcap.sc@canada.ca or at:

Health Canada, CPAB

200 Eglantine Driveway, Tunney's Pasture

Jeanne Mance Building, AL 1915C

Ottawa Ontario K1A 0K9

Catalogue Number: H14-470/2024E-PDF

International Standard Book Number (ISBN): 978-0-660-69287-6

Related publications (registration number: POR 034-23 – HC 23-04)

Validation qualitative des créatifs publicitaires pour les soins palliatifs et la compréhension des points de vue des aidants non rémunérés et de la famille

Catalogue Number: H14-470/2024F-PDF

International Standard Book Number (ISBN): 978-0-660-69288-3

^©His Majesty the King in Right of Canada, as represented by the Minister of Health, 2023

Table of contents

• Executive summary
• Introduction
• Detailed findings
  • Detailed reactions to the creative concepts
  • Communications preferences
  • Caregivers' views on palliative care, grief and bereavement
• Conclusions
• Appendix A: Qualitative methodology report
• Appendix B: Recruitment screener
• Appendix C: Discussion guide
• Appendix D: Testing materials

Executive summary

Earnscliffe Strategy Group (Earnscliffe) is pleased to present this report to Health Canada summarizing the results of the qualitative research to gauge reactions to creative materials and views of caregivers/family for the Palliative Care Public Education Campaign.

Palliative care can help improve the quality of life for people of all ages living with serious illness by relieving symptoms, helping people continue to be actively engaged in doing the things they love most, and when the time comes, providing support to the individual and their family throughout the dying and bereavement process. Unfortunately, people in Canada do not consistently have access to the palliative care services they require in their preferred setting. Barriers to accessing palliative care are multifactorial and complex and have been exacerbated by the COVID-19 pandemic.

The Government of Canada has committed to improving access to quality palliative care by advancing Health Canada's Action Plan on Palliative Care. A key priority of the Action Plan is to raise awareness and understanding of the importance of palliative care, including public education on grief. Initiatives under this priority area include the development and implementation of a public awareness campaign targeting:

1. Health and social service providers who are not palliative care specialists, to build capacity and educate them on the benefits of a palliative approach to care including grief supports.

2. Persons living with serious illness (including underserved populations), their family (or chosen family), friends, and caregivers to support the gradual normalization of death and dying, increase grief literacy and increase awareness of benefits of early palliative care.

   For the purposes of this report, the term caregivers is used throughout to refer to family (or chosen family), friends and caregivers of people living with serious illness (who are unpaid caregivers).

As part of this commitment, Health Canada is developing creative marketing concepts as part of their public awareness campaign. The aim of this research was to test advertising creatives and messages targeting persons living with serious illness, and their family (or chosen family), friends and caregivers and to obtain baseline information from caregivers on their views on palliative care and grief. It aimed to gather key insights that will be used to promote comprehension and retention of the campaign messages.

Earnscliffe was retained to conduct a comprehensive wave of qualitative research to test a variety of creative materials for the Palliative Care Public Education Campaign. The objective of the research was to collect feedback on the different concepts and creative materials including video stories, social media posts, a list of key messages, audio ads, and a quiz, to ensure they resonated with their intended audiences. The research also explored communications preferences of the target audiences; and, with caregivers, specifically, the research aimed to understand perspectives of palliative care and grief, more generally. These insights will be used to inform final creative development by determining the potential for effectiveness and the resonance of messages, concepts and key insights on palliative care and grief literacy with the target audiences.

To meet the research objectives, Earnscliffe conducted twelve (12) qualitative focus groups. The target audiences included: people in Canada living with serious illness including those with physical disabilities; and family (or chosen family), friends and caregivers of people living with serious illness (referred to as caregivers throughout). The groups were conducted with members of the general population and those from Black, Indigenous and Other People of Colour (BIPOC) communities.

The groups were conducted with residents of three regions of the country: Eastern Canada (NL, PE, NS, NB, QC, ON) in English; Eastern Canada (NB, QC, ON) in French; and Western and Northern Canada (MB, SK, AB, BC, YT, NT, NU). Grouping the regions in this way ensured that participants from official language minority communities were accommodated in their preferred language. The focus groups were approximately 90 minutes in length.

The total contract value of the research was $76,415.12 including HST.

It is important to note that qualitative research is a form of scientific, social, policy and public opinion research. Focus group research is not designed to help a group reach a consensus or to make decisions, but rather to elicit the full range of ideas, attitudes, experiences, and opinions of a selected sample of participants on a defined topic. Because of the small numbers involved, the participants cannot be expected to be thoroughly representative in a statistical sense of the larger population from which they are drawn, and findings cannot reliably be generalized beyond their number.

The key findings of this research are presented below.

• The vast majority of participants claimed to have learned something new and come away with a broader understanding of palliative care and a palliative approach to care as a result of being exposed to this campaign.
  • The notion of asking for help or support to care for a loved one, unless it was an emergency or the end of life, is considered taboo in some cultures.
• The palliative approach to care described initially and conveyed in the campaign materials did not coincide with the experience of most caregivers.
• All of the campaign materials were deemed appropriate and credible. Most felt that this public awareness campaign was important and warranted.
  • There was cause for concern among a few caregivers who worried the current state of the health care system is unprepared to handle this approach to care.
• The approach to feature the real-life stories of people in palliative care was very well received. However, featuring those in later stages of life (e.g., as noted with the English stories) reinforces the misconception that palliative care is only for end of life or older adults.
• With respect to the video ads, reactions to the individual storyteller video ads were often more positive (compared to the Hero ads which combined multiple stories). They were felt to be informative, and demonstrative of how a palliative approach to care can improve the quality of life for both patients and caregivers.
• Reaction to the Hero and Grief video ads were also generally positive. Participants appreciated and shared in the authenticity of the experiences featured in the ads, though, having multiple stories to follow in each was challenging for some and led to the feeling the ads were less informative or impactful.
• As for the social media ads, participants generally liked the overall look and feel of all four concepts, though there was a sense they would not be particularly noticeable mainly because of the muted colours.
  • Participants seemed to prefer ads that featured people looking at each other rather than the camera. The former was felt to be more intimate and authentic while the latter felt more staged.
• In terms of social media messaging, there was a preference for succinct messages.
• Where palliative care was concerned, messaging that care can start at diagnosis; extends to those providing care/support; includes emotional, psychological, social, and spiritual support; or includes grief and bereavement support after a death were the most resonant.
  • Messaging around holistic care was not broadly understood or appreciated.
• In terms of grief messaging, while the message that everyone's experience of grief will be unique was understood and valid, it was not new or attention-grabbing. Messaging that grief supports can support people before and after a loss; that it can connect patients and caregivers to local grief supports; or that it includes support for patients and caregivers was new, inclusive, and actionable.
• Reaction to the audio ads was mixed. Some were very well received, others less so. Reactions were a little more positive for ads that featured one person's voice (such as Guneet or Biba).
• Audio ads that were concise and to the point, and that conveyed when palliative care begins, that support is available to the patient and caregiver, and that it can help improve quality of life, fared better.
• Arguably the element that received the most positive reactions was the interactive quiz. It seemed to be quick and easy to complete, but educational in a way that challenged their current perceptions/knowledge, and a great way to debunk myths and point them to "learn more".
• When asked where they would like to receive information about health, palliative care, and/or grief, participants offered the view that the campaign needs to be broad-based, including a mix of traditional (television, radio, print, telephone, mail, and email) and modern (social media, podcasts, digital posters) communications approaches, to reach the most people possible.
• Social media seemed to be commonly used by most participants. The platforms most commonly referred to included: Facebook and Instagram, followed by Tik Tok, YouTube and Reddit.
• Listening to podcasts was not widely practiced and for those who do, they were rarely health related.
• In terms of credibility of health information, most would rely on their family doctor and/or other healthcare professionals. Many also mentioned having confidence in Government of Canada information or information provided by provincial/territorial governments. Other mentions included: hospitals, community health agencies, counselors, and people with lived experience (as featured in this campaign).
• When asked whether social media influencers are credible sources of health information, the instinctual reaction was no, though upon reflection, many reasoned that influencers speaking of their own lived experience with palliative care and/or grief could be credible.

Caregivers' views on palliative care, grief and bereavement

• Like persons living with serious illness in Understanding Canadians' views on palliative care (POR 81-21), caregivers tended to be surprised by certain dimensions of the description of palliative care and a palliative approach to care. And, for most, this description did not coincide with their experiences as caregivers.
  • What surprised them most was that palliative care could begin as early as the time of diagnosis, that it could involve a variety of health care professionals, and that there was an array of supports available to both those with a serious illness and their caregivers.
• One of the biggest differences between general population caregivers and BIPOC caregivers was a sense that in some cultures, it is taboo to ask for help/support unless it is absolutely necessary (end of life).
  • There was a sense that, while welcome and likely very helpful, taking advantage of this approach to care may take time, socialization and some getting used to.
• When asked whether they had talked about palliative care with the person for whom they provide care, few had. There was certainly an appreciation that having these conversations is not easy.
• The descriptions of grief and bereavement very well encapsulated caregivers' understandings of both terms. Few, however, spoke of grief related to anything other than the loss of a loved one.
• The one dimension that many spoke about, particularly those for whom the person they cared for had passed away, and that they had not been prepared for, was the challenge of having to support other's while they grieved, and the impact it would have on their ability to deal with their own grief.
• They also spoke of a sense of guilt over the relief they felt not having the burden of care anymore.
• To deal with their grief, most spoke of the importance of coming together with family and friends.
• Others mentioned that they had found counseling/therapy, faith, and attending church helpful as well.

Research firm:

Earnscliffe Strategy Group (Earnscliffe)

Contract number: CW2328538

Contract value: $76,415.12

Delivery date: November 2, 2023

I hereby certify as a Representative of Earnscliffe Strategy Group that the final deliverables fully comply with the Government of Canada political neutrality requirements outlined in the Policy on Communications and Federal Identity and Directive on the Management of Communications. Specifically, the deliverables do not include information on electoral voting intentions, political party preferences, and standings with the electorate or ratings of the performance of a political party or its leaders.

Signed:

Stephanie Constable
Principal, Earnscliffe

Date: November 2, 2023

Introduction

Earnscliffe Strategy Group (Earnscliffe) is pleased to present this report to Health Canada summarizing the results of the qualitative research to gauge reactions to the final creative materials for the Palliative Care Public Education Campaign and to obtain baseline perspectives from caregivers on the topics of palliative care and grief.

Palliative care can help improve the quality of life for people of all ages living with serious illness by relieving symptoms, helping people continue to be actively engaged in doing the things they love most, and when the time comes, providing support to the individual and their family throughout the dying and bereavement process. Unfortunately, people in Canada do not consistently have access to the palliative care services they require in their preferred setting. Barriers to accessing palliative care are multifactorial and complex and have been exacerbated by the COVID-19 pandemic.

The Government of Canada has committed to improving access to quality palliative care by advancing Health Canada's Action Plan on Palliative Care. A key priority of the Action Plan is to raise awareness and understanding of the importance of palliative care, including public education on grief. Initiatives under this priority area include the development and implementation of a public awareness campaign targeting:

1. Health and social service providers who are not palliative care specialists, to build capacity and educate them on the benefits of a palliative approach to care including grief supports.

2. Persons living with serious illness (including underserved populations), their family (or chosen family), friends, and caregivers to support the gradual normalization of death and dying, increase grief literacy and increase awareness of benefits of early palliative care.

   For the purposes of this report, the term caregivers is used throughout to refer to family (or chosen family), friends and caregivers of people living with serious illness (who are unpaid caregivers).

As part of this commitment, Health Canada is developing creative marketing concepts as part of their public awareness campaign. The aim of this research was to test advertising creatives and messages targeting persons living with serious illness, and their family (or chosen family), friends and caregivers. It aimed to gather key insights that will be used to promote comprehension and retention of the campaign messages.

Earnscliffe was retained to conduct a comprehensive wave of qualitative research to test a variety of creative materials for the Palliative Care Public Education Campaign. The objective of the research was to collect feedback on the different concepts and creative materials including video stories, social media posts, a list of key messages, audio ads, and a quiz, to ensure they resonated with their intended audiences. The research also explored communications preferences of the target audiences; and, with caregivers, specifically, the research aimed to understand perspectives of palliative care and grief, more generally. These insights will be used to inform final creative development by determining the potential for effectiveness and the resonance of messages, concepts and key insights on palliative care and grief literacy with the target audiences.

The specific objectives of the research were to ensure the advertising campaign resonates with its intended target audience and meets its objectives, by:

• Determining if the content was:
  • clearly understood;
  • credible, relevant and of value;
  • appealing and appropriate;
  • culturally sensitive and trauma-informed;
  • memorable; and,
  • able to motivate the audiences to take intended actions.
• Eliciting suggestions/options for improving the campaign materials.
• Eliciting insights on the campaign's marketing elements.
• Eliciting understanding on palliative care and a palliative approach to care, and its benefits.
• Determining understanding of quiz resource questions.
• Eliciting insights on how and where the audiences like to receive health-related information.
• Gathering insights on additional topics including comfort levels in discussing palliative care, dealing with grief, barriers to accessing/discussing palliative care, and past experiences with palliative care (for family, friends, and caregivers only).

The results of this research will be used to inform final creative development by determining the potential for effectiveness and the resonance of messages and concepts with target audiences.

Methodology

To meet the research objectives, Earnscliffe conducted twelve (12) qualitative focus groups with 5 to 8 participants in each (81 participants total). The target audiences included: people in Canada living with serious illness including those with physical disabilities; and family (or chosen family), friends and caregivers of people living with serious illness (referred to as caregivers throughout). The groups were conducted with members of the general population and those from Black, Indigenous and Other People of Colour (BIPOC) communities.

The groups were conducted with residents of three regions of the country: Eastern Canada (NL, PE, NS, NB, QC, ON) in English; Eastern Canada (NB, QC, ON) in French; and Western and Northern Canada (MB, SK, AB, BC, YT, NT, NU). Grouping the regions in this way ensured that participants from official language minority communities were accommodated in their preferred language. The focus groups were approximately 90 minutes in length.

Participants were also provided with incentives in recognition of their time.

The following table outlines the approach to the groups by target audience, region, and language.

Appended to this report are the methodology report, recruitment screener, discussion guide, and materials tested in the focus groups.

It is important to note that qualitative research is a form of scientific, social, policy, and public opinion research. Qualitative research is not designed to help a group reach a consensus or to make decisions, but rather to elicit the full range of ideas, attitudes, experiences, and opinions of a selected sample of participants on a defined topic. Because of the small numbers involved, the participants cannot be expected to be thoroughly representative in a statistical sense of the larger population from which they are drawn, and findings cannot reliably be generalized beyond their number.

Detailed findings

This report details the findings of the qualitative research undertaken by Earnscliffe Strategy Group (Earnscliffe) on behalf of Health Canada to gauge reactions to the final creative materials for the Palliative Care Public Education Campaign. This report is divided into three sections: detailed reactions to the creative materials; communications preferences; and caregivers' views on palliative care, grief and bereavement.

Reading this report

The qualitative findings, except where specifically identified, represent the combined results across the target audiences. Quotations used throughout the report were selected in order to bring the analysis to life and provide typical verbatim commentary from participants across the various groups. Details about the focus group methodology, sampling, and design approach may be found in Appendix A. A glossary of terms that explains the generalizations and interpretations of qualitative terms used throughout this report can also be found in the Qualitative Methodology Report in Appendix A.

To set the context for the focus group discussions, participants living with serious illness were initially read a description of palliative care and a palliative approach to care (please refer to the discussion guide in Appendix C or the testing materials in Appendix D). With that understanding, the groups immediately turned to the evaluation of the campaign creative concepts.

With caregivers, the discussions also began with a definition of palliative care and a palliative approach to care, as well as with definitions of grief and bereavement (please refer to the discussion guide in Appendix C or the testing materials in Appendix D). Participants were read the definitions and then a group discussion ensued exploring their views on palliative care, grief and bereavement. The findings of those discussions are summarized in the third section of this report, Caregivers' views on palliative care, grief and bereavement.

Detailed reactions to the creative concepts

To gauge reactions to the campaign, participants were shown a variety of creative concepts including video ads, social media ads including alternative messaging, audio ads (those with serious illness only), and an interactive quiz (though not every group reviewed this concept as a result of timing). The findings related to each follows in the order in which they were presented to most participants (as outlined above). Visuals and descriptions of these creative concepts can be found in Appendix D.

Worth noting, the group discussions demonstrated that the way palliative care was described throughout the various campaign creative materials was much broader, adaptable, and inclusive (of family, friends, and caregivers) than their preconceived notions (i.e., that it was very specifically care for someone with a terminal illness at the end of life).

"People are not aware of what it all entails. I learned something new." – Person living with a serious illness; Eastern Canada in English

"Palliative care is not just for the last moments of life. Assistance is available before." – Person living with a serious illness; Western/Northern Canada in English

"I'm glad I joined this group. I did not know it included all of this. It's reassuring." – Caregiver; Western/Northern Canada in English

"What I liked is that it emphasized the moral and psychosocial support. It's not always about the physical and mobility." - Caregiver; Eastern Canada in French

A few caregivers were a little worried about the promotion of a broader description of palliative care. Based on their experience with palliative care, and in the context of the current state of Canada's health care system, they worried the health care system is not equipped or structured to provide the quality of care described in the campaign.

"It can't just be a commercial. It has to be available." – Caregiver; Western/Northern Canada in English

"This is what people want, but not what's there. It's not realistic." – Caregiver; Western/Northern Canada in English

Video ads

In most groups, participants were shown and asked to react to three video ads. In one group, with the caregivers who identify as French-speaking members of the BIPOC communities from Eastern Canada, participants were shown and asked to react to four videos. Each group reviewed both the Hero and Grief concepts first, with the hero video played first. The third (and fourth) video shown in each group were as follows:

Worth noting, for the Hero and Grief ads, different versions were presented in English and French that showcased multiple real-life stories of Canadians in the language of the focus group.

Hero ad

Reaction to the Hero ads were generally positive. Participants appreciated the authenticity of the stories featured in the ad which they described as "genuine" and "touching". Most felt the ad was effective at conveying the broader understanding of palliative care; that it can start at the time of diagnosis, is available to people of all ages, that there are a variety of supports available, and to both the patient and their caregivers. The tone of the ad was described as calming and many felt that it would capture their attention as a result.

Worth noting, there was a sense that the hero ads were hard to follow because they featured multiple people and stories. As a result, some participants did not find the ads all that informative as they were having trouble following the arc of any of the stories.

Those critical of the ad felt it was a little dark; the colours were not all that vibrant coupled with the calming tone made for a sombre ad. Some caregivers were triggered in the sense that they felt the ad portrayed an idyllic palliative care experience that was not consistent with their experience (i.e., plagued by process, steps, delays, etc.).

"It's a little frustrating. The way it's presented suggests it's super easy to get all these services but it's not. Everything takes so long. You just have to wait with no answers. They're selling the dream." – Caregiver; Eastern Canada in French

Worth noting, the English version of the ad, more so than the French, seemed to feature people in later stages of life which seemed to perpetuate the preconceptions that palliative care is only for older adults. The French version seemed to be more effective at presenting diversity both in terms of ages, and cultural backgrounds.

Grief ad

Reactions to the Grief ads were similarly generally positive. Participants appreciated that the ad conveyed both the dark and positive sides of palliative care; especially the English ad, in that, "the darkness comes but it also goes, the light comes back". This felt realistic.

What was perhaps best received, was the emphasis on grief which participants felt would help to normalize grief.

"So, I like this one better than the first one [Hero ad]. I found it more clear of what palliative care can do. The first one was kind of vague. You didn't really know that. With this one, it was about palliative care 'til the very end. But this one kind of spoke about grief right away. And I think everybody's experienced grief. So, in some way or another, having that little blurb at the end, kind of gives people time to maybe link to the site and seek some help." – BIPOC caregiver; Eastern Canada in English

"For myself, I think yeah, it definitely makes the point. I think it's a bit more direct than the previous one [Hero ad]. The previous one [Hero ad] I felt it was a bit more general. This one is a bit more direct to the point, shows you real scenarios, real experiences that somebody could be going through." – BIPOC caregiver; Western/Northern Canada in English

"Oh, I'm really connected to that one completely. My husband is going through dementia, and he's fallen a couple of times. I am right with that one. Absolutely. I got a lot out of that one." – Caregiver; Western/Northern Canada in English

Those critical of the ad in English felt that it was a little short and not very informative. They described the tone as a little sombre and sad.

"I have a mixed reaction. On the one hand, it is quite sombre or sad. But end of life, palliative care is not really a happy subject. So I don't know. I think it would be better if it were more not necessarily optimistic but I'm not sure how you would do that. I don't know. It's got a very sad undertone." – BIPOC person living with a serious illness; Western/Northern Canada in English

"When you think of palliative care, I don't want to think about it that way. It's like, I'd like to see it as okay, you're getting all the support that could help you. You want to enjoy life, the limited or the last days, I guess, or, you know, that time that you have." – BIPOC caregiver; Western/Northern Canada in English

Those critical of the ad in French felt it was less informative and confusing. Many struggled to understand the arc of the story which detracted from the message. For example, they were not sure whether the ad was telling one family's story, or multiple families' stories, and how the various depictions related. They wondered whether the young adult depicted in the ad, was also the younger boy depicted in the photos? Had the woman's child passed or was he still alive?

"How long has this woman lived this experience? I think it would be helpful if we could understand their story. If she has been living this for eighteen years, we're all wondering why she did not get help before. It's a little confusing." – Caregiver; Eastern Canada in French

Having said that, and as we will see later with respect to the storyteller ads, participants really connected with Biba. They felt she was engaging, well-spoken, and authentic.

Storyteller ads

With respect to the storyteller ads, participants very much appreciated hearing the real-life stories and voices of those who have experienced a palliative approach to care. Most participants felt these ads were more positive (as compared to the Hero or Grief ads), very informative, and demonstrative of how a palliative approach to care can help improve the quality of life for patients and caregivers. Many remarked positively on the fact that the ads featured people at home, or with family/loved ones, or enjoying nature rather than typical settings (i.e., in a hospital or care facility).

Mary Lee's story was uniquely effective at communicating the valued message that care can vary depending on what you need from day to day. Her comment that some days she needs help getting dressed and other days she is full of energy was compelling and to some, a note of optimism.

"One of the things I liked about this one, is that it introduces the idea of a diversity of palliative care, right? So it's saying, okay, she just needs help to get dressed in the morning. A lot of people may not even think like, oh, I need palliative care for that. But it introduces the idea that there are all kinds of degrees of it. And her degree is she might need care for some days and not others. And that that to me is a good introduction. So, I appreciate that part of this ad." – Caregiver; Eastern Canada in English

Participants liked Guneet's story and felt she was authentic and genuine, especially in her characterization of her misinterpretation of palliative care. But this ad was a good example of the challenges raised regarding the disconnect between the visuals and wording of messages (i.e., it accentuated palliative care is only for older adults, and that the family takes on more responsibility for the care).

"This gives more definition of palliative care. Like the lady was saying that she didn't know about palliative care and how it works. Now she has more info about how it works and how it goes and how she can help people. The content is more accurate." – BIPOC living with a serious illness; Eastern Canada in English

Participants felt that Mike & Julie's story was very informative and the main message that they took away was that palliative care can help you make the most out of life. The twist on the message, "I'm living with ALS, I'm not dying from ALS" was very well received.

"I liked it because it showed, you know that there is a dark side. There's always going to be a dark side. But there's also a positive side. And I liked that message. It was short. But it was impactful." – Person living with a serious illness; Eastern Canada in English

Participants felt that Biba's story was very informative, summing up all of the relevant points, and effective at conveying that palliative care very much begins at the time of diagnosis and is not strictly end of life care. Perhaps more so than the grief ad, participants really connected with Biba. She was engaging, authentic, and the tone of her voice was so pleasing; it really drew participants in. The arc of her story was also much better understood in this ad than in the Grief ad.

"Personally, I loved this ad. I found it explained very well the difference between palliative care and end of life care. And that's what people need. Because most of us had no idea there was a difference between the two." – Caregiver; Eastern Canada in French

"I like this one. It's well said. It helps a lot. It will encourage people of minorities – because it is taboo to ask for help – to understand that it's ok to ask for help and support. It's ok to talk about it." – BIPOC caregiver; Eastern Canada in French

Ismael's story very obviously conveyed, with the portrayal of a younger person's story, that palliative care is not strictly for end of life, that it can support those with chronic, progressive illnesses, from the time of their diagnosis. This was particularly well received and appreciated.

Worth noting, those from BIPOC communities found Biba's and Ismael's story particularly effective at demystifying cultural norms (as we will see later in this report), that one only seeks support and/or professional attention, care, or support at the end of life.

And because the two ads were presented to BIPOC caregivers, it was interesting to witness participants' overall positive reaction to understanding the arc of their story from their respective perspectives.

"Ultimately, it made me realize that it's not now that the person may die. Yes, they have a degenerative illness, or a chronic illness, but they need to be able to receive care. This ad demystifies this. It removes the taboo that we only seek professional care when we're at the end of life. We also go when we have a chronic illness and when we need care. It gives an alternative view, or another vision, for palliative." – BIPOC caregiver; Eastern Canada in French

Alex's story challenged participants' predispositions towards palliative care and the benefits of alternative therapies in palliative care, in this case Alex's passion for art.

"For me, it opened my eyes to a new concept. It's not something that would have occurred to me as it relates to therapy. Practicing art, of any type (i.e., drawing, painting, playing music), is not a concept I was familiar with but that's what I liked about the ad. It opens you up to different ways to deal with grief; a different path."– Person living with a serious illness; Eastern Canada in French

Social media ads

Participants were then asked to review and react to four social media ads. There were two ads related to palliative care and two related to grief. In each group, participants reviewed the two ads for palliative care before the two ads for grief. The order of presentation of each of the two ads was randomized. The social media ads, whether palliative care or grief focused, were generally well received though they did not summon up any real sense of enthusiasm. While there were visual and wording preferences across the four concepts (discussed below), participants generally liked the overall look and feel – describing it as clean, clear, calming, and soothing – though there was a sense that they may not be particularly noticeable.

Overall, the messages conveyed in the ads seemed to be relevant and interesting. Most were deemed succinct enough yet still informative.

Worth noting, in French, some participants were not comfortable with the use of the word "peut" ("can") in many of the messages which suggested a certain ambiguity and condition around the availability of support. Those from BIPOC communities felt this unnecessarily plays into their inclination to believe that professional support/care is only available for emergency or end of life care.

Palliative care

Participants generally appreciated these ads, though from a messaging perspective they gravitated more towards the message, A palliative approach to care can start at diagnosis. The findings suggest that this message, more so than the other, A palliative approach to care can improve quality of life, would capture their attention, and pique their curiosity to learn more.

"I like that it starts at diagnosis. It gives me more to go on." – Person living with a serious illness; Eastern Canada in English

"I think this message could help eliminate stigma around palliative care that it's only for end of life." – Person living with a serious illness; Eastern Canada in English

Those critical of either of these ads, were critical of the choice to feature people who appear to be in the later stages of their lives which participants felt did not fit with the description of palliative care they had come to understand or the message that a palliative approach to care can start at diagnosis. They suggested featuring people younger in age as well.

In terms of the staging of the images, the majority of participants seemed to prefer seeing the people featured in the ads looking at each other rather than at the camera. They explained that when people are looking at each other, it feels more authentic and intimate and suggests they are in conversation; whereas, when they are looking at the camera, it feels more staged.

"I think looking at each other is better. It looks more authentic. Whereas when you're looking at the camera, it looks like you're posing for The Gap." – Person living with a serious illness; Eastern Canada in English

In terms of alternate messages (please refer to Appendix D), participants liked almost all of the messages and felt there were important nuggets of information within each. Overall, some indicated that they favoured shorter messages.

Asked their preferences, they seemed to rally around:

• A palliative approach to care provides support to patients, families, and caregivers which they felt was inclusive.
• A palliative approach to care goes beyond end-of-life care because it suggests that palliative care is not "a death sentence".
• A palliative approach to care can help patients embrace life was described as hopeful.
• A palliative approach to care offers flexible supports suggested one could adjust their care approach to their needs.
• A palliative approach to care can support caregivers too which was new for some and reassuring for most.
• At every stage of serious illness, a palliative approach to care can provide support to patients and those closest to them, while long, seemed to hit on all the key points for participants – that this is for treatment of serious illness (not strictly end of life) and that support is available to patients and caregivers.
• A palliative approach to care includes emotional, psychological, social, and spiritual support was appreciated for educating about the range of supports possible.

The one message that stood out in a more controversial way was, A palliative approach to care is holistic care. For some, the word, "holistic", seemed to conjure up different connotations, including non-traditional treatments such as naturopathic remedies.

"It makes me think of looking for herbs and holistic stuff. But, yeah, I don't want that. Because I was imagining going for crystals." – Person living with a serious illness; Eastern Canada in French

Grief

As with the palliative care social media ads, reaction was generally lukewarm. While there was nothing inappropriate, they did not seem to be all that attention-grabbing or memorable.

Perhaps of all four social media ads, the grief ad with the blue foreground, was the one with the most mixed reviews. Some found the blue foreground cold; the colours used in the other three ads were felt to be warm(er). Coupled with the image of the sombre woman, the blue ad came across as sad. Others liked the blue, found it appropriate for the message, and were curious about the person's experience.

"I agree everyone's experience with grief will be unique. I like the picture. She's pensive. She is going through something." – Person living with a serious illness; Western/Northern Canada in English

In terms of the message, Everyone's experience of grief will be unique, while appreciated for its succinctness and accuracy, was also described as matter of fact and understood (not all that new). Some also stated that they were not sure what the ad was about, claiming it was not obvious that it could be about palliative care. Should Health Canada proceed with this message, participants suggested it may be more appropriate to feature multiple people experiencing grief (rather than just one) in the image.

"If I saw the blue one, I wouldn't know it was about palliative care. It could be about suicide or something else. The message is good though." – Person living with a serious illness; Eastern Canada in French

The message featured in the other ad, A palliative approach to care can support people before and after a loss, was very well received in that it presented new information. The vast majority of participants were surprised to learn that there was support available both before and after a loss, but mostly after a loss. The majority stated that they usually assume care/support ceases with loss/death.

With respect to the alternate messages related to grief, participants felt that most were a little long though they liked most of the messages. Those that seemed to resonate more included:

• A palliative approach to care can connect patients and caregivers to local grief supports was felt to be less general than the others and more specific about where one could get support. One participant also suggested this is particularly relevant for people in rural areas as they often do not know where to start (to find care/support).
• A palliative approach to care can include grief support for patients and caregivers, was appreciated for the sentiment of inclusion and availability of support to all involved.

Worth noting, while not the predominant view, as most participants agreed that the experience of grieving is unique to each person, one participant pointed out that there is a wrong way to grieve and explained that some retaliate or resort to violence.

Audio ads

Following the social media ads, those with serious illness were played two audio ads (in language) in randomized order. They were asked to listen to each ad in silence after which a discussion ensued.

Reaction to the audio ads was mixed. Some were very well received, others less so.

In English, reaction to Guneet's audio ad was mixed. Those who liked the ad described it as short, sweet and to the point; the point being that palliative care is not just for end of life. They also connected with Guneet and felt she seemed nice, calm, and positive. Those more critical of the ad, felt that it was too specific because she mentioned her grandmother and not general enough for everybody.

"It was short, sweet, and to the point. They shared what they got out of it [palliative care]: here's what it was for, here's what I've learned." – Person living with a serious illness; Western/Northern Canada in English

"Again, with focusing on the elderly [her grandmother]. I think that they should make it more general. Like for anyone who's going through a serious illness or multiple illnesses. I don't like that they just automatically assume that it's [palliative care] for elderly people, because there are a lot of younger people that are going through health problems and serious ones at that. – BIPOC living with a serious illness; Eastern Canada in English

The Mike & Julie audio ad fared a little better. Participants felt it was a little more hopeful and they appreciated the twist on the description of palliative care not being the end. They also appreciated the focus on the availability of support.

"It is a positive message. It's informative. It specifies that you don't need to have a specific disease, or you don't need to be [actively] dying, to have access. I really liked this one. – BIPOC living with a serious illness; Eastern Canada in English

In French, participants really liked Biba's audio ad. Again, they especially loved the sound and tone of her voice. They felt they would definitely stop and listen just to hear her story. In terms of the messages conveyed, they felt the ad was short, concise, and to the point. It also seemed to touch on all of the major points such as when palliative care begins, that support is available to all involved, and that it can help improve quality of life. Participants also appreciated that there was a clear call to action (linking them to more information).

"What I really liked was that they accentuated the difference between palliative care and care for end of life. That palliative care begins at the time of diagnosis and goes until the end of life. In the best of all possible worlds, of what will remain of life, this care would provide the best way to live it." – Person living with a serious illness; Eastern Canada in French

"I find the lady's voice is good. You know, she has a good tone, good intonations, and it makes you want to listen to what she has to say." – Person living with a serious illness; Eastern Canada in French

Reaction to Alex & Sylvie's ad was more subdued. Participants explained this was likely due to the fact there were two people to focus on, which made it a little more distracting and harder to follow. The majority did not find this ad as attention-grabbing or engaging and also found it less informative. Those who liked the ad felt the main message was to confirm the importance of palliative care and the need to take control of their lives.

"It didn't work for me. There was more than one person talking. The information didn't get to me." – Person living with a serious illness; Eastern Canada in French

Interactive quiz

The final concept reviewed in most groups was the interactive quiz. Participants were shown images of different pages of the quiz to help understand how they might experience it should they interact with it on their smartphones. The images depicted an initial introduction page, five question-and-answer pages, and a final page.

Arguably the element that received the most positive reactions of all of the creative materials tested was the interactive quiz. While not all participants said they like to do quizzes online, many said that they do, to challenge their knowledge, and went on to say they often share them with others online. Most could see themselves engaging with this concept should they come across it online; perhaps more so than any other concept tested.

"I like to test my knowledge. This would be an effective approach. I learned a lot." – Person living with a serious illness; Eastern Canada in French

"This is the best thing we've seen all night. It's complete. It's a new approach. There is lots of information." – BIPOC person living with a serious illness; Eastern Canada in French

"I love this so much. I hope they do this. It's an escape but gives you information. You can keep going if you want to. The concept was amazing and well done." – Caregiver; Western/Northern Canada in English

Participants also felt the interactive quiz was effective at delivering information and debunking myths, including those who said they do not like doing quizzes online. They really liked the questions and the amount of information shared and suggested presenting information in this way (i.e., including for other elements of the campaign). They felt it seemed to be quick and easy to complete, but educational in a way that challenges their current perceptions/knowledge, and a great way to point them to "learn more".

In terms of the overall look and feel of the quiz, most participants really liked the question-and-answer pages as well as the final page. They described these pages as clean, well-organized, and pleasing to the eye. There was a little more divergence, however, in appreciation of the introduction page with some feeling it would not capture their attention, or that it was a little too much like "clickbait", and others describing it as perfect the way it is.

Those who found it boring explained that the colours were muted and felt the overall look was not all that attention-grabbing.

Those who were skeptical of the quiz (i.e., describing it as "clickbait"), were put off by the question and challenge and the prominence of the button to take the quiz.

"The only thing I don't like is how the first part reads with the question and, 'you may be surprised by the answer'. It's click bait. I know they need to attract your attention, but it would turn me off. The rest of it was good. It's informative." – Person living with a serious illness; Western/Northern Canada in English

When asked whether having a Government of Canada logo more visible on the introduction page would help, and while participants were not necessarily averse to it, they also did not find it would make much difference or assuage their feelings about the approach.

Those who liked the introduction page described it as warm, inviting, and pleasing to the eye.

With respect to the image, those who liked the image of the multiple hands felt it was interpretive. It suggested unity, supportive care, helping hands, family/people there for you, and symbolized that we're all in this together, that we'll get through this. When asked whether they would prefer a visual depicting people's faces, these participants thought displaying the faces of multiple people would be more limiting/narrow. Those who did not like the image did not feel it was likely to capture their attention. They did not understand the imagery of the hands, nor did they interpret anything from them. For them, it simply did not fit with the main message and invitation of the concept.

Communications preferences

Most of the groups concluded with a discussion about communications preferences.

Asked where they would like to receive information about health, palliative care, or grief, participants seemed to refer to a variety of communication channels. Participants offered the view that the campaign needs to be broad-based to reach the most people possible. They felt it should include a mix of traditional (i.e., television, radio, print, telephone, mail, and email) and modern (i.e., social media, podcasts, digital posters) communications approaches.

Social media seemed to be the channel most commonly used by most participants. The platforms they said they use most often include Facebook and Instagram, followed by TikTok, YouTube and Reddit.

Listening to podcasts was not widely practiced; usually two participants per group (of the 5 to 8 participants), though rarely podcasts that are health related.

In terms of the credibility of health information, most would rely on their family doctor and/or other healthcare professionals. Many also mentioned having confidence in the Government of Canada's information or information provided by provincial/territorial governments. Other mentions included: hospitals, community health agencies, counselors, and people with lived experience (as featured in this campaign).

When asked whether social media influencers are credible sources of health information, instinctually most participants felt they were not. They explained that they question the motives of influencers explaining they tend to be self-interested and profit motivated. Some felt it could discredit this campaign to use influencers. However, as the conversation ensued, many reasoned that influencers could be credible if they were speaking of their own lived experience with palliative care and/or grief.

"I have a problem with that. I think we already have a problem with people taking the wrong information from influencers and listening to it like it's the Bible. So, giving them even more credit because what if they do this ad? And then they say something else afterwards that is just completely off the wall. I don't think we should give an influencer, that type of power. They're not a medical professional." – BIPOC living with a serious illness; Western/Northern Canada in English

"It depends. If they're experiencing this vs. just getting paid. If they're going through it, it could be good. It says you're not alone. Famous people are going through this stuff too." – Caregiver; Western/Northern Canada in English

Caregivers' views on palliative care, grief and bereavement

Like persons living with serious illness, as reported in Understanding Canadians' views on palliative care (POR 81-21), caregivers tended to be surprised by certain dimensions of the description of palliative care and a palliative approach to care. The involvement of a variety of health care professionals and the breadth of support available, including to caregivers, were often called out as new and interesting, as was the fact this care was available as early as the time of diagnosis.

When prompted, most explained that the care they had received or were receiving, did not coincide with this description. Many spoke of challenges they face trying to get the care they need for their loved ones such as long wait times, delays, lack of personnel, lack of coordination of care/services, and very few answers.

"In my experience, there is help but you have to go get it. It's not like they will reach out to you. It's harder to navigate but I know we have to ask what they can have." – BIPOC caregiver; Eastern Canada in French

One of the biggest differences between general population caregivers and BIPOC caregivers were cultural norms that suggest members of the family should care for an ailing loved one until there is an emergency or the loved one is at the end of life. While in part this was due to a lack of awareness, for most, there was a sense that it was taboo to ask for help unless it was absolutely necessary. Participants felt that, while welcome and likely very helpful, taking advantage of this approach to care may take time, socialization and some getting used to.

"Before today, I thought it was up to us to take care of my sister. I didn't know people could help." – BIPOC caregiver; Eastern Canada in French

"In our culture, we rely on family. I didn't really know we could get other supports until we saw how painful it was for him and finally had to bring him to the hospital." BIPOC caregiver; Eastern Canada in French

When asked whether they had talked about palliative care with the person for whom they provide care, few had. Taking into consideration the association most make with palliative care as end-of-life care, this was perhaps not all that surprising. Having said that, the research also suggests that having these conversations is certainly not easy. One caregiver in the Western/Northern Canada group spoke of dreading the day she would have to speak to her husband about palliative care. She explained, "My husband is in the hospital. I know there will be a time when we have to have that conversation. I don't know how to have it. I don't know what he wants."

With respect to grief and bereavement, participants felt that these descriptions were consistent with and very well encapsulated their understandings of both terms. The vast majority were able to share stories of grief, though very few, if any, spoke of grief related to anything other than the loss of a loved one.

Those who were a caregiver to someone who had since passed away, spoke about the challenge of having to support other's while they grieved, and the impact it had on their ability to deal with their own grief. This was something for which they were unprepared.

"When my mom passed, my dad had a nervous breakdown. We're dealing with his grief while trying to deal with ours." – Caregiver; Western/Northern Canada in English

The other dimension that a few spoke about was a sense of guilt over the sense of relief they experienced of not having the burden of care anymore. They explained that they had many conflicting feelings. Feelings of being torn that while you are providing care to someone who is dying, you sacrifice so much of your time and energy to play that important role, and sometimes you wish you did not have to play that role, and when they pass you also feel bad for having that time back.

To deal with their grief, most spoke of the importance of coming together with family and friends. Some spoke of the good will of neighbours, coworkers, and members of their churches as particularly helpful. Others mentioned that they had found counseling/therapy, faith and attending church helpful as well.

Conclusions

To the extent that the focus of the campaign was to strengthen the understanding of how palliative care can improve quality of life until the end of life, the campaign seems to have hit the mark. The vast majority of participants, from both audiences, claimed to have learned something new and come away with a broader understanding of palliative care and a palliative approach to care. That being that palliative care was much broader, adaptable, and inclusive of caregivers than their preconceived notions (i.e., that it was very specifically care for someone with a terminal illness at the end of life). And those who could speak from experience, caregivers, often shared that the care they had received or were receiving, did not coincide with this description.

The campaign approach of sharing real-life stories was very well received and felt to be more personal, relatable, engaging, and likely to capture their attention. Depicting people with a serious illness surrounded by loved ones and in places where they were most comfortable (i.e., at home, in nature) rather than in hospital/care settings also played well. As did featuring the stories of people younger in age.

The component that seemed to generate the most enthusiasm and the one participants felt would most motivate them to do something, was the quiz. The interactivity and challenge to test their knowledge was inviting and participants felt it would be an educational means to deliver information and debunk myths and misconceptions about palliative care and to encourage them to learn more.

That being said, all of the concepts were deemed appropriate, and, while there were preferences in terms of likes and dislikes, there did not seem to be anything that participants felt could not be included as part of the campaign. Most felt that this public awareness campaign was important and warranted.

For that reason, they recommended a broad-based campaign relying on both traditional (television, radio, print, mail, and email) and modern communications approaches (such as social media which they use most often). Communicating in doctors' offices, pharmacies, on government and local health authorities' websites, they felt would also be effective especially given their trust in these people/institutions. Leveraging social media influencers was a little more controversial unless the influencer is speaking about their own personal experience with palliative care.

Finally, on grief and bereavement, the main challenges for caregivers who provided care for someone who had since passed, related to having to support others while they grieved (rather than focus on their own grief) and a sense of guilt over the relief they experienced of not having the burden of care anymore. To deal with grief, participants found the support of family, friends, and neighbours as well as counseling/therapy, and faith helpful.

Appendix A: Qualitative methodology report

Methodology

To begin, we conducted a series of twelve (12) online focus groups consisting of five to eight (5 to 8) participants conducted between October 10th and 12th, 2023. The focus groups were approximately 90 minutes in length.

The target audiences for the research included: people in Canada living with serious illness including those with physical disabilities; and family (or chosen family), friends and caregivers of people living with serious illness (referred to as caregivers throughout). The groups were further separated depending on whether they were members of the general population or those from Black, Indigenous and Other People of Colour (BIPOC) communities.

For each audience, groups were conducted across three regions of the country: Eastern Canada (NL, PE, NS, NB, QC, ON) in English; Eastern Canada (NB, QC, ON) in French; and Western and Northern Canada (MB, SK, AB, BC, YT, NT, NU). Grouping the regions in this way ensured that participants from official language minority communities were accommodated in their preferred language. This approach ensured we were able to easily include those living in official language minority communities (OLMCs). The focus groups were approximately 90 minutes in length. Participants were also given an incentive for their participation.

The following table outlines the focus group schedule by target audience, region, and language as well as the number of participants recruited and participated in each group.

Appended to this report are the recruitment screener, discussion guide, and materials tested in the focus groups.

Recruitment

Participants were recruited using recruitment screeners (see Appendix B).

For each focus group, 8 participants were recruited according to the target audiences and the participants from official language minority communities were accommodated in their preferred language.

Our field work subcontractor, Quality Response, and their selected suppliers reached out to members of their respective databases first via email and followed up with telephone calls to pre-qualify participants. They then conducted telephone recruitment to supplement in each market.

Moderation

Two moderators were used to conduct the focus groups with both target audiences: people in Canada living with serious illness and family (or chosen family), friends and caregivers.

Our two senior researchers, Stephanie Constable and Doug Anderson, led the focus group moderation. Upon completion of the initial focus groups, our moderators met and compared their findings and thoughts about the groups. The moderators checked in with each other frequently to compare findings and suggested, in consultation with the Project Authority, any changes to the moderator's guide.

A note about interpreting qualitative research results

It is important to note that qualitative research is a form of scientific, social, policy, and public opinion research. Focus group research is not designed to help a group reach a consensus or to make decisions, but rather to elicit the full range of ideas, attitudes, experiences, and opinions of a selected sample of participants on a defined topic. Because of the small numbers involved the participants cannot be expected to be thoroughly representative in a statistical sense of the larger population from which they are drawn, and findings cannot reliably be generalized beyond their number.

Glossary of terms

The following is a glossary of terms which explains the generalizations and interpretations of qualitative terms used throughout the report. These phrases are used when groups of participants share a specific point of view and emerging themes can be reported. Unless otherwise stated, it should not be taken to mean that the rest of participants disagreed with the point; rather others either did not comment or did not have a strong opinion on the question.

Appendix B: Recruitment screener

Focus Group Summary

• Recruit 8 participants per group
• Groups are 90 minutes in length
• 12 groups in total:
  • Three groups with each of the following audiences:
    • General population caregivers including those who know someone currently living with serious illness and those who know someone who recently received palliative care
    • BIPOC caregivers including those who know someone currently living with serious illness and those who know someone who recently received palliative care
    • General population living with serious illness including those with physical disabilities
    • BIPOC living with serious illness including those with physical disabilities
  • Ensure good mix of other demos (province within regions, age, gender, income, education, urban/suburban/rural etc.)

Respondent's name:

Respondent's phone number: (work)

Respondent's phone number: (cell)

Respondent's email:

Interviewer:

Date:

Validated:

Hello/Bonjour, this is _______________ calling on behalf of Earnscliffe, a national public opinion research firm. Would you prefer that I continue in English or French? Préférez-vous continuer en français ou en anglais ?

Note: If at this point the respondent prefers to respond in French, then the interviewer must be able to either proceed with the interview in French or read the following statement: « Je vous remercie. Quelqu'un vous rappellera bientôt pour mener le sondage/ le questionnaire/ la preselection en français. »

We are organizing a series of discussion groups on issues of importance on behalf of the Government of Canada, specifically Health Canada. The Government would like to gather your views and reactions to a public awareness and education campaign. We are looking for people who would be willing to participate in a 90-minute online discussion group. Up to 8 participants will be taking part and for their time, participants will receive an honorarium. May I continue?

• Yes Continue
• No Thank and terminate

Participation is voluntary. We are interested in hearing your opinions; no attempt will be made to sell you anything or change your point of view. The format is a 'round table' discussion led by a research professional. All opinions expressed will not be attributed to any specific individual within the report. Views will be grouped together to ensure no particular individual can be identified. The information you provide will be administered according to the requirements of the Privacy Act, the Access to Information Act, and any other pertinent legislation.

I would like to ask you a few questions to see if you or someone in your household qualify to participate. This will take about three minutes. May I continue?

• Yes Continue
• No Thank and terminate

Monitoring text:

Read to all: "This call may be monitored or audio taped for quality control and evaluation purposes.

Additional clarification if needed:

To ensure that I (the interviewer) am reading the questions correctly and collecting your answers accurately;

To assess my (the interviewer) work for performance evaluation;

To ensure that the questionnaire is accurate/correct (i.e. evaluation of CATI programming and methodology – we're asking the right questions to meet our clients' research requirements – kind of like pre-testing)

If the call is audio taped, it is only for the purposes of playback to the interviewer for a performance evaluation immediately after the interview is conducted or it can be used by the Project Manager/client to evaluate the questionnaire if they are unavailable at the time of the interview – all audio tapes are destroyed after the evaluation.

1. Do you or does anyone in your immediate family or household work in any of the following areas?

If "yes" to any of the above, thank and terminate.

2. In which province or territory do you live?

• Newfoundland and Labrador 1
• Nova Scotia 2
• New Brunswick 3
• Prince Edward Island 4
• Quebec 5
• Ontario 6
• Manitoba 7
• Saskatchewan 8
• Alberta 9
• British Columbia 10
• Nunavut 11
• Northwest Territories 12
• Yukon 13
• East (EN): 2 from Atlantic Canada, 2 from Quebec, 4 from Ontario
• East (FR): 2 from Atlantic Canada, 4 from Quebec, 2 from Ontario
• West/North (EN): 1 from Manitoba, 1 from Saskatchewan, 2 from Alberta, 3 from British Columbia, 1 from Territories

3. Do you have a life-impacting health condition or illness? What is it? [Do not read answer categories, use pre-coded list]

• ALS ("Lou Gehrig's Disease")
• Alzheimer and other dementias (e.g., Lewy Body dementia, vascular dementia, Creutzfeldt-Jakob disease, etc.)
• Arteriosclerosis
• Autoimmune and inflammatory disease (e.g., Rheumatoid arthritis, Lupus, Inflammatory bowel disease, etc.)
• Bone disease (e.g., Osteoporosis, Brittle Bone disease)
• Bowel obstruction
• Cancer
• Cardiovascular diseases (e.g., Cardiomyopathy, Coronary artery disease, pulmonary embolism, etc.)
• Cerebellar degeneration
• Cerebrovascular diseases (e.g., Stroke, TIA, Cerebrovascular accident, Aneurysm, etc.)
• Chronic ischemic heart disease
• Chronic respiratory/lung diseases (e.g., Emphysema, Pneumonia, Chronic Obstructive Pulmonary disease (COPD), Cystic fibrosis, etc.)
• Congenital malformation
• Congestive heart failure and heart disease
• Degenerative joint disease (e.g., Osteoarthritis)
• Diabetes
• End-stage Renal Disease (e.g., renal failure, kidney failure, etc.)
• Epilepsy
• Fractures / Injury (with ongoing complications/impacts)
• Frailty
• Genetic diseases (e.g. Sickle cell disease, Tay Sachs disease, Hemophilia, etc.)
• Haemorrhagic fevers (e.g., Ebola and Marburg, Lassa fever, yellow fever viruses, etc.)
• HIV/AIDS
• Huntington's disease
• Inflammatory central nervous system disease (e.g., chronic meningitis, central nervous system vasculitis, neurosarcoidosis, etc.)
• Leukemia
• Liver disease (e.g., liver cirrhosis, Hepatitis A, B, and C, Wilson disease, etc.)
• Malignant neoplasm
• Malnutrition
• Multiple sclerosis
• Musculoskeletal disorder
• Non-ischemic heart disease
• Neurological disease (e.g., Alexander disease, Ataxia, Multiple system atrophy (MSA), Muscular dystrophy, etc.)
• Neuropathy
• Parkinson's disease
• Progressive supranuclear palsy
• Tuberculosis
• None of the above [Go to Q5]
• Don't know/Prefer not to answer [Go to Q5]

4. Do you identify as a person with a physical disability?

• Yes 1
• No 2
• Prefer not to answer 9

Minimum of two per groups 1, 2, 3, 4, 5, 6 have a physical disability and a life-impacting health condition/or illness.

If has a physical disability and a life-impacting health condition or illness, skip to Q9

5. Do you provide currently or have you provided within the past year unpaid care and/or assistance to a person living with a life-impacting health condition or illness?

• Yes 1 Continue
• No 2 Thank and terminate
• Don't know/Prefer not to answer 9 Thank and terminate

6. What life-impacting health condition or illness does the person you provide/provided care and/or assistance to live with? [Do not read answer categories, use pre-coded list]

• ALS ("Lou Gehrig's Disease")
• Alzheimer and other dementias (e.g., Lewy Body dementia, vascular dementia, Creutzfeldt-Jakob disease, etc.)
• Arteriosclerosis
• Autoimmune and inflammatory disease (e.g., Rheumatoid arthritis, Lupus, Inflammatory bowel disease, etc.)
• Bone disease (e.g., Osteoporosis, Brittle Bone disease)
• Bowel obstruction
• Cancer
• Cardiovascular diseases (e.g., Cardiomyopathy, Coronary artery disease, pulmonary embolism, etc.)
• Cerebellar degeneration
• Cerebrovascular diseases (e.g., Stroke, TIA, Cerebrovascular accident, Aneurysm, etc.)
• Chronic ischemic heart disease
• Chronic respiratory/lung diseases (e.g., Emphysema, Pneumonia, Chronic Obstructive Pulmonary disease (COPD), Cystic fibrosis, etc.)
• Congenital malformation
• Congestive heart failure and heart disease
• Degenerative joint disease (e.g., Osteoarthritis)
• Diabetes
• End-stage Renal Disease (e.g., renal failure, kidney failure, etc.)
• Epilepsy
• Fractures / Injury (with ongoing complications/impacts)
• Frailty
• Genetic diseases (e.g. Sickle cell disease, Tay Sachs disease, Hemophilia, etc.)
• Haemorrhagic fevers (e.g., Ebola and Marburg, Lassa fever, yellow fever viruses, etc.)
• HIV/AIDS
• Huntington's disease
• Inflammatory central nervous system disease (e.g., chronic meningitis, central nervous system vasculitis, neurosarcoidosis, etc.)
• Leukemia
• Liver disease (e.g., liver cirrhosis, Hepatitis A, B, and C, Wilson disease, etc.)
• Malignant neoplasm
• Malnutrition
• Multiple sclerosis
• Musculoskeletal disorder
• Non-ischemic heart disease
• Neurological disease (e.g., Alexander disease, Ataxia, Multiple system atrophy (MSA), Muscular dystrophy, etc.)
• Neuropathy
• Parkinson's disease
• Progressive supranuclear palsy Tuberculosis
• None of the above [Thank and terminate]
• Don't know/Prefer not to answer [Thank and terminate]

If provides/provided care and/or assistance to a person living with a life-impacting health condition or illness (Q5) and if person living with life-impacting health condition or illness qualifies with one of the illnesses in Q6, qualifies as an unpaid caregiver (Groups 7, 8, 9, 10, 11, 12)

7. Does the person you care for identify as a person with a physical disability?

• Yes 1
• No 2
• Prefer not to answer 9

Minimum of one per groups 7, 8, 9, 10, 11, 12 are caring for someone who also has a physical disability.

8. What is your relationship with that person? [ENSURE GOOD MIX]

• Spouse/Partner 1
• Parent 2
• Child 3
• Other family member 4
• Friend 5
• Unpaid caregiver 6
• Prefer not to answer 9 Thank and terminate

9. What is your racial and/or ethnic background? [Select all that apply.]

• Black (African, Afro-Caribbean, African-Canadian descent) 1
• East Asian (Chinese, Korean, Japanese, Taiwanese descent) 2
• Indigenous (First Nations, Inuit, Métis) 3
• Latin American (Hispanic descent) 4
• Middle Eastern (West Asian or North African descent,
  e.g. Afghan, Egyptian, Iranian) 5
• South Asian (Indian, Pakistani, Sri Lankan, Indo-Caribbean descent) 6
• Southeast Asian (Filipino, Vietnamese, Cambodian, Thai descent) 7
• White (European descent) 8
• Prefer not to answer 9 Thank and terminate

If select anything but "white", continue for BIPOC groups.

10. Which of the following age categories do you fall in to? Are you…? [Ensure good mix]

• Under 18 years 1 Thank and terminate
• 18-24 years 2
• 25-29 years 3
• 30-34 years 4
• 35-44 years 5
• 45-54 years 6
• 55-65 years 7
• 66-74 8
• 75+ 9 Thank and terminate

11. What gender do you identify with? [Ensure good mix]

• Male 1
• Female 2
• Non-binary person 3
• Two-spirit 4
• Another gender identify 5
• Prefer not to answer 9 Thank and terminate

12. What is your current employment status? [Ensure good mix]

• Working full-time 1
• Working part-time 2
• Self-employed 3
• Retired 4
• Unemployed 5
• Student 6
• Other 7
• Prefer not to answer 9 Thank and terminate

13. Which of the following categories best describes your total household income; that is, the total income of all persons in your household combined, before taxes? [READ LIST] [Ensure good mix]

• Under $20,000 1
• $20,000 to under $40,000 2
• $40,000 to under $60,000 3
• $60,000 to under $80,000 4
• $80,000 to under $100,000 5
• $100,000 to under $150,000 6
• $150,000 or more 7
• Prefer not to answer 9 Thank and terminate

14. What is the last level of education that you have completed? [Ensure good mix]

• Some high school only 1
• Completed high school 2
• Some college/university 3
• Completed college/university 4
• Post-graduate studies 5
• Prefer not to answer 9 Thank and terminate

15. Would you describe the area in which you live as… [Ensure good mix]

• Urban 1
• Suburban 2
• Rural 3
• Prefer not to answer 9 Thank and terminate

16. Have you participated in a discussion or focus group before? A discussion group brings together a few people in order to know their opinion about a given subject.

• Yes 1 Max 4 per group
• No 2 Skip to Q18
• Don't know/Prefer not to answer 9 Thank and terminate

17. When was the last time you attended a discussion or focus group?

• If within the last 6 months 1 Thank and terminate
• If not within the last 6 months 2 Continue
• Don't know/Prefer not to answer 9 Thank and terminate

18. How many of these sessions have you attended in the last five years?

• If 4 or less 1 Continue
• If 5 or more 2 Thank and terminate
• Don't know/Prefer not to answer 9 Thank and terminate

This research will require participating in a video call online.

19. Do you have access to a computer, smartphone or tablet with high-speed internet which will allow you to participate in an online discussion group?

• Yes Continue
• No Thank and terminate

20. Does your computer/smartphone/tablet have a camera that will allow you to be visible to the moderator and other participants as part of an online discussion group?

• Yes Continue
• No Thank and terminate

INVITATION

21. Participants in discussion groups are asked to voice their opinions and thoughts. How comfortable are you in voicing your opinions in front of others? Are you…? (READ LIST)

• Very comfortable 1 Minimum 4 per group
• Fairly comfortable 2 Continue
• Comfortable 3 Continue
• Not very comfortable 4 Thank and terminate
• Not at all comfortable 5 Thank and terminate
• Don't know/Prefer not to answer 9 Thank and terminate

22. The discussion groups will be about palliative care and grief/bereavement. Are you comfortable speaking about this topic with a research professional?

• Yes 1 Continue
• No 2 Thank and terminate

23. Would you prefer to participate in the discussion group alone or would you prefer to participate with the support of a family member or care partner?

• Alone 1
• With a care partner or family member 2

[If prefers to participate with a care partner/family member, specify]: Your care partner or family member would be permitted to attend, at your request, to provide support during the discussion group. They would not be permitted to respond to any of the questions and would merely attend to listen and provide support. They will need to be available on the scheduled date/time and will not be incented/compensated for their attendance.

24. Do you have access to the technology necessary to participate in this discussion group online?

• Yes 1
• No 2

25. [If no] Is there anything we could do to ensure that you can participate? What specifically?

Interviewer to note interviewees needs and consult with Earnscliffe on approach.

26. Based on your responses, it looks like you have the profile we are looking for. I would like to invite you to participate in a small group discussion, called an online focus group, we are conducting at [time], on [date]. As you may know, focus groups are used to gather information on a particular subject matter. The discussion will consist of up to 8 people and will be very informal.

It will last up to 90 minutes and you will receive an incentive of $125 as a thank you for your time. Would you be willing to attend?

• Yes 1 Recruit
• No 2 Thank and terminate
• Don't know/Prefer not to answer 9 Thank and terminate

Privacy Questions

Now I have a few questions that relate to privacy, your personal information and the research process. We will need your consent on a few issues that enable us to conduct our research. As I run through these questions, please feel free to ask me any questions you would like clarified.

P1) First, we will be providing a list of respondents' first names and profiles (screener responses) to the moderator so that they can sign you into the group. Your first name will be visible to others in the group. Do we have your permission to share your first name?

• Yes 1 Go to P2
• No 2 Go to P1a

We need to provide the first names and background of the people attending the focus group because only the individuals invited are allowed in the session and this information is necessary for verification purposes. Please be assured that any background information will be kept strictly confidential. Go to P1a

P1a) Now that I've explained this, do I have your permission to provide your first name and profile to the moderator and that it is known/visible to others in the group?

• Yes 1 Go to P2
• No 2 Thank & terminate

P2) A recording of the group session will be produced for research purposes. The recordings will be used by the research professional to assist in preparing a report on the research findings and may be used by the Government of Canada to inform their work in this subject area.

Do you agree to be recorded for research and reporting purposes only?

• Yes 1 Thank & go to P3
• No 2 Read info below & go to P2a

It is necessary for the research process for us to record the session as the researchers need this material to complete the report.

P2a) Now that I've explained this, do I have your permission for recording?

• Yes 1 Thank & go to P3
• No 2 Thank & terminate

P3) Employees from the Government of Canada and the creative agency may also be online to observe the groups. They will be provided with a list of participants' first names and profiles for their reference during the groups.

Do you agree to be observed by Government of Canada employees and employees of the creative agency?

• Yes 1 Thank & go to invitation
• No 2 Go to P3a

P3a) It is standard qualitative procedure to invite clients, in this case, Government of Canada employees, to observe the groups online. They will be there simply to hear your opinions firsthand although they may take their own notes and confer with the moderator on occasion to discuss whether there are any additional questions to ask the group.

Do you agree to be observed by Government of Canada employees and employees of the creative agency?

• Yes 1 Thank & go to invitation
• No 2 Thank & terminate

Invitation

Wonderful, you qualify to participate in one of our discussion sessions. As I mentioned earlier, the group discussion will take place on [DATE] at [TIME] for up to 90 minutes.

Can I confirm your email address so that we can send you the link to the online discussion group?

We ask that you login a few minutes early to be sure you are able to connect and to test your sound (speaker and microphone). If you require glasses for reading, please make sure you have them handy as well.

As we are only inviting a small number of people, your participation is very important to us. If for some reason you are unable to attend, please call us so that we may get someone to replace you. You can reach us at [insert phone number] at our office. Please ask for [name]. Someone will call you in the days leading up to the discussion to remind you.

So that we can call you to remind you about the discussion group or contact you should there be any changes, can you please confirm your name and contact information for me?

First name

Last name

email

Daytime phone number

Evening phone number

If the respondent refuses to give his/her first or last name, email or phone number please assure them that this information will be kept strictly confidential in accordance with the privacy law and that it is used strictly to contact them to confirm their attendance and to inform them of any changes to the discussion group. If they still refuse thank & terminate.

Appendix C: Discussion guide

Introduction (10-minute section / 10 minutes total)

Moderator introduces herself/himself and her/his role: role of moderator is to ask questions, make sure everyone has a chance to express themselves, keep track of the time, be objective/no special interest.

• Good afternoon/Good evening and welcome everyone! My name is Stephanie/Doug and I use [she/he/they] pronouns. I will be leading our conversation today.
• I would like to acknowledge that I am joining from the traditional, unceded territory of the Algonquin Anishinaabe nation. I recognize that we are all joining from different places and encourage you to share the Indigenous traditional territory you are joining from as part of your introduction later.
• As mentioned, when we invited you to participate in this discussion group, we're conducting research on behalf of the Government of Canada and Health Canada, more specifically. The main focus of our discussion is to better understand perspectives on the topic of palliative care and grief and to gather your reactions to a series of draft advertising concepts for an upcoming campaign.
• It is important for you to know that I am not a subject matter expert and do not have lived experience of taking care of or been in palliative care, hospices, etc.
• I am very appreciative of the opportunity to better understand your thoughts/views through your lived experiences.
• I also want to acknowledge the diversity of experiences for participants, and that we value these differences and welcome insight from people of all racial and/or ethnic backgrounds, genders, sexual orientations, abilities, faiths, family structures, and cultural backgrounds.
• Your perspectives are very important and will help Health Canada in their efforts to develop messaging, educational resources, promotional materials, and marketing tools to strengthen the understanding of how palliative care can improve quality of life until the end of life.
• I also want to acknowledge the sensitive nature of our conversation today and to reassure you that you should feel completely at ease declining to answer any questions you prefer not to answer. What you share will be treated respectfully.
• If our conversation today causes you to feel distress, please feel free to take a moment for yourself, and re-join us if you are able to continue. You can also feel free to share your thoughts in the chat if you prefer.
• Role of moderator: to ask questions, to listen to everyone's perspectives, make sure everyone has a chance to express themselves, keep track of the time, assures participants that moderator has no special interest in, or knowledge of, the issues discussed.
• Role of participants: speak openly and frankly about opinions, remember that there are no right or wrong answers and no need to agree with each other. [Emphasize that this is a safe space.]
• Results are confidential. Individual comments will not be attributed but reported all together. The results will be published to Library and Archives Canada in 6 months.
• The length of the session (1.5 hours).
• The presence of any observers, notetakers, their role and purpose – listening and taking notes – and the means of observation (observers viewing and listening in remotely).
• Confirm participants are comfortable with the platform and some of the specific settings such as: how to mute and unmute themselves; where the hand raise button is; and the chat box. Don't be afraid to use the chat box if you have something to contribute but are having trouble jumping in verbally.
• Are there any questions about what I have just explained? Are you comfortable with all of this?

Moderator will go around the table and ask participants to introduce themselves.

• Introduction of participants: To get started, let us introduce ourselves.
• As you know, my name is Stephanie. I have been in public opinion research for 25 years and have a passion for qualitative research and getting to meet and speak with interesting people like yourselves.
• As you know, my name is Doug. I got into public opinion research by accident 30 years ago and I have come to truly love finding out what people think about all kind of different topics and issues.
• Now let us go around the virtual room. Please tell us your first name what you do during the day, on which traditional territory you reside (if comfortable sharing) and one of your favourite interests or hobbies. Please feel free to introduce yourselves in the chat as well if you're more comfortable.

Context and understanding (10-minute section)

[Caregivers]

Palliative care is a health service that can be offered at any point during a serious illness, from the time of a diagnosis to the end of life. It aims to improve quality of life and can be given alongside treatments intended to cure the illness.

Palliative care addresses the physical (for example, pain and symptom management), emotional or social, cultural, and spiritual needs of individuals of all ages and supports their families and caregivers. It also includes grief support throughout the illness for all those affected, including family, friends, and caregivers, as well as bereavement support after a loved one passes.

It may be delivered by a wide variety of care providers, including primary health care providers (doctors, nurses and personal support workers), specialists for an illness, and palliative care specialists. It can also be provided by others such as physiotherapists, respiratory therapists, social workers, spiritual leaders, or nutritionists. Palliative care can be provided in primary care, long-term care, home and community care, and other settings.

A palliative approach to care integrates the core elements of palliative care into the care provided by non-specialists in primary care (meaning those who do not specialize in palliative care, like a family doctor, nurse, or personal support worker), long-term care and all mainstream health and social care services.

• How do you feel about this description of palliative care?
  • Do you have other understandings of what palliative care is that you would like to share (e.g., do you use a different term for palliative care)?
  • Do you have any thoughts, reflections, or questions around palliative care?
• In your understanding of palliative care, who is palliative care for? When/where is palliative care provided and by whom? When is palliative care most helpful for individuals and families?
• Thinking about your experience as a caregiver supporting a loved one or someone close to you, have you talked with the person you care for about their needs related to this kind of care? If not, why not?
  • Probe: Have you considered palliative care as an option for them? If not, why not?
• If the person you care for is currently receiving palliative care or has received palliative care in the past, what are you comfortable sharing about their experience?
• Have you or someone close to you experienced any challenges in accessing palliative care? What are you comfortable sharing about these barriers and/or challenges? How did the barriers and/or challenges impact you and the person for whom you provide care?

Grief has been defined by experts as a response to any type of loss and could occur before a death (for example, grieving the loss of a job, health, or mobility) as well as after. Everyone's experience of grief is unique. No one can tell you what the process will be like or how long it will take. The time that people experience grief after loss is different for every person.

Bereavement is the state of having experienced and being in the period of mourning after a loss, such as a death. The term may be used differently in different settings. For example, it may refer to a specific time, such as a timeframe set out in employment bereavement leave benefits. Mourning is expressed in various ways, including through rituals in cultures or religions.

• How do you feel about this description of grief and bereavement? Do you have other understandings of grief and bereavement that you would like to share?
• Can you share what helped you during your grieving, or what might have been helpful? What kind of strategies, supports, resources, or cultural beliefs/practices helped you with your grieving or would have been helpful? Possible probes:
  • Therapy/Counseling: Professional help can provide coping strategies and an understanding ear.
  • Community Support: Engaging with community or social groups can provide a sense of belonging and shared grief.
  • Support Groups: Sharing experiences with others who are going through a similar situation can be comforting.
  • Religious or Spiritual Practices: Rituals, prayers, or spiritual guidance can provide solace.
  • Journaling: Writing about feelings can be therapeutic and helps in processing emotions.
  • Art or Music Therapy: Expressing grief through creative means can be healing.
  • Holistic Therapies: Acupuncture, massage, or other holistic treatments can help some people relax and cope.
• If you have been a caregiver for someone who has since passed away, do you feel that the change in your role (i.e., from caregiver to no longer being the person's caregiver) may have impacted your grief? If so, can you share your experience?

Concept testing

[For Those Living with Illness]

To begin, I would like to read to you a definition in order to set the context for our discussions today:

Palliative care is a health service that can be offered at any point during a serious illness, from the time of your diagnosis to the end of life. It aims to improve quality of life and can be given alongside treatments intended to cure the illness.

Palliative care addresses the physical (for example, pain and symptom management), psychological or social, cultural, and spiritual needs of individuals of all ages and supports their families and caregivers. It also includes grief support throughout the illness for all those affected, including family, friends, and caregivers, as well as bereavement after a loved one passes.

It may be delivered by a wide variety of care providers, including primary health care providers, specialists for your illness, and palliative care specialists. It can also be provided by others such as physiotherapists, social workers, spiritual leaders, or nutritionists. Palliative care can be provided in primary care, long-term care, home and community care, and other health settings.

A palliative approach to care integrates the core elements of palliative care into the care provided by non-specialists in primary care, long-term care and all mainstream health and social care services.

In the coming months, the Government of Canada is launching a campaign aimed at raising awareness of palliative care and grief.

[ALL]

The purpose of our discussion today/tonight is to show you a series of creative concepts, which refers to visuals and wording messages, to gauge your reactions. We have a number of different types of ads to share with you including video, social media, audio, and quizzes.

For groups with Indigenous peoples:

As these draft concepts and messaging are for all audiences, we want to emphasize the importance of strengthening cultural safety in health care messaging as integral to building a stronger and more culturally inclusive and supportive society. Racism resulting from Canada's colonial history remains embedded in Canada's health systems and society and continues to have harmful effects on First Nations, Inuit, and Métis communities. Throughout the process of developing materials for the campaign, we want to be sensitive to the journey of Indigenous families, and acknowledge the importance of Joyce's Principle, named in memory of Joyce Echaquan from the Atikamekw Nation in Quebec, which aims to guarantee to all Indigenous Peoples the right of equitable access to health and social services, as well as the right to enjoy the best possible physical, mental, emotional, and spiritual health. In this spirit, Health Canada's work aims to honour Joyce's Principle and develop health care messaging that is safe, respectful, and culturally sensitive. We are here to listen to your thoughts about these draft concepts and invite you to provide your feedback in the safe space of this focus group.

One last thing… some of these are final products, some are still draft. I want you to imagine seeing these concepts in the real world (i.e., while browsing webpages, scrolling social media, or listening to podcasts.

Video ads (15-minute section / 25 minutes total)

[ALL]

Let's begin with the video ads. These are 30-second ads. I will share my screen to play each ad one at a time. We will watch them together in silence and then we will discuss your reactions together.

[For each group, participants will see 2 ads (the hero ad and the grief ad for their language). If time allows, the moderator will show a third 'storyteller' ad specific to the audience.]

[Moderator to display each ad in rotated order one at a time on screen. Moderator to lead a discussion to understand reactions to each concept. Moderator to probe the following for each.]

• What is your overall reaction to this concept? What, if anything, do you like? What, if anything, do you dislike? Why?
• What did you take away as the main message?
• How does it make you feel, especially about palliative care and/or grief? Why?
• What did you think of the testimonial approach?
• Would you notice it/Would it capture your attention? Is it memorable? Why or why not?
• Was anything confusing or unclear? How so?
• Did anything surprise you (i.e. did you learn anything)?
• As far as you're concerned, is it appropriate to communicate about palliative care and/or grief in this way? Why or why not?
• If you saw this concept, would it motivate you to do anything? Why or why not?
  • If yes, what would you be motivated to do?
• How could it be improved?

Social media ads (20-minute section / 45 minutes total)

[ALL]

Now let's look at the social media ads. We have four social media ads to show you. Again, we will review the ads together in silence and then we will discuss your reactions together.

[Moderator to display each ad in rotated order one at a time on screen. Moderator to lead a discussion to understand reactions to each concept. Moderator to probe the following for each.]

• What is your overall reaction to this concept? What, if anything, do you like? What, if anything, do you dislike? Why?
• Would you notice it/Would it capture your attention? Is it memorable? Why or why not?
• If you saw this concept, would it motivate you to do anything? Why or why not?
  • If yes, what would you be motivated to do?
  • Would you "like" it or share it? Why or why not?
• Was anything confusing or unclear? How so?
• Did anything surprise you (i.e., did you learn anything)?
• As far as you're concerned, is it appropriate to communicate about palliative care and/or grief in this way? Why or why not?
• How could it be improved?

Alternate messages

We have some additional messages (8 for palliative care and 3 for grief) we would like to share that could be used with the graphics we reviewed already or in other ads.

[Moderator to show alternate messages that could be used as replacement text or in other ads.]

• What do you think of this message?
• Are there any specific words or phrases that you find particularly compelling? Are any problematic? Why?

Audio ads (15-minute section / 60 minutes total)

[Living with serious illness]

Next, I'd like us to talk about the possibility of audio ads with similar messaging. These are ads that you might hear sometime (i.e., on the radio or while listening to a podcast, for example).

• Quick show of hands, do you listen to podcasts?
• [Hands up] Has anyone heard a podcast ad related to health before?
  • If so, would you be motivated to take action as a result? Why or why not?
• Do you think this (podcast ads) is an appropriate medium to communicate with you and your family members about the issues we've discussed today? If not, why not?

[Suggest only showing these to groups that have at least 4/8 participants listen to podcasts and group is mixed on the usefulness with aligned messaging.]

[Moderator to play audio ads one at a time. Moderator to lead a discussion for each using the following prompts then the other if time allows]

• What is your overall reaction to this audio ad? What, if anything, do you like? What, if anything, do you dislike? Why?
• What did you take away as the main message?
• How does it make you feel, especially about palliative care and/or grief? Why?
• If you heard this concept, would it motivate you to do anything? Why or why not?
  • If yes, what would you be motivated to do?
• Did anything surprise you (i.e. did you learn anything)?
• How could it be improved? Is there anything missing that should be communicated through ads like these?

Quiz (15-minute section / 75 minutes total)

[ALL, Caregivers if time allows]

The last concept I would like to review is an interactive quiz that one might be prompted to participate in while browsing a webpage online. To give you a feel for it, I will share visuals on screen. Again, please try to imagine this as an interactive quiz you might play online.

[Moderator to show mock-up of quiz on screen. Moderator to lead a discussion for each screen using the following prompts.]

• What is your overall reaction to this quiz?
• What did you take away as the main message?
• How does it make you feel, especially about palliative care and/or grief? Why?
• Would you be likely to play this interactive quiz if you came across it online? Why or why not?
• Did anything surprise you (i.e. did you learn anything)?
• How could it be improved? Is there anything missing that should be communicated through ads like these?

Communications (10-minute section / 85 minutes total)

[ALL]

Finally, I would like to take a few minutes to understand your communications preferences.

• Where would you like to receive health care related information or information about palliative care and/or grief? Probe for more than a Google search, more specific sources.
  • Probe: Would you like to receive… TV ads; Internet ads; YouTube videos; social media platforms; information on a website; posters/brochures/pamphlets in hospitals, doctor's offices, pharmacies, etc.; other with health information about palliative care and/or grief?
• Who would you deem credible in terms of sources of health information?
• Are social media influencers credible sources of health information?
  • Would they inspire you to learn more about a palliative approach to care or motivate you to take action related to your illness? Why or why not?
  • Do you think this would be appropriate to reach you and your family members about the issues we talked about today? If not, why not?
• [Hands up] Has anyone ever seen a digital poster in a doctor's office or a pharmacy before?
  • Did you find it useful? Why or why not?
  • Do you think this is an appropriate medium to communicate with you and your family members about the issues we've discussed today? If not, why not?

Conclusion (5-minute section / 90 minutes total)

[ALL]

[Moderator to request additional questions are sent via the chat box directly to the moderator and probe on any additional areas of interest.]

This concludes what we needed to cover tonight.

• Do you have any final thoughts or any advice for Health Canada and/or their creative agency as they move to the final production stage?
• [Moderator to post in the chat] For more information about palliative care and Health Canada's work in this area, please visit https://www.canada.ca/en/health-canada/services/palliative-care.html and https://www.canada.ca/en/health-canada/services/provincial-territorial-contact-information-links-end-life-care.html or contact eolc-sfv@hc-sc.gc.ca.

Thank you very much for your participation. We really appreciate you taking the time to share your views. Your input is very important.

Appendix D: Testing materials

Definitions

For each group participants were presented one or three definitions according to their target audience group. Caregivers were presented three definitions while people living with a serious illness were presented one. The definitions presented are the Government of Canada definitions of palliative care, grief and bereavement.

Palliative Care – Caregivers

Palliative care is a health service that can be offered at any point during a serious illness, from the time of a diagnosis to the end of life. It aims to improve quality of life and can be given alongside treatments intended to cure the illness.

Palliative care addresses the physical (for example, pain and symptom management), emotional or social, cultural, and spiritual needs of individuals of all ages and supports their families and caregivers. It also includes grief support throughout the illness for all those affected, including family, friends, and caregivers, as well as bereavement support after a loved one passes.

It may be delivered by a wide variety of care providers, including primary health care providers (doctors, nurses and personal support workers), specialists for an illness, and palliative care specialists. It can also be provided by others such as physiotherapists, respiratory therapists, social workers, spiritual leaders, or nutritionists. Palliative care can be provided in primary care, long-term care, home and community care, and other settings.

A palliative approach to care integrates the core elements of palliative care into the care provided by non-specialists in primary care (meaning those who do not specialize in palliative care, like a family doctor, nurse, or personal support worker), long-term care and all mainstream health and social care services.

Grief – Caregivers only

Grief has been defined by experts as a response to any type of loss and could occur before a death (for example, grieving the loss of a job, health, or mobility) as well as after. Everyone's experience of grief is unique. No one can tell you what the process will be like or how long it will take. The time that people experience grief after loss is different for every person.

Bereavement – Caregivers only

Bereavement is the state of having experienced and being in the period of mourning after a loss, such as a death. The term may be used differently in different settings. For example, it may refer to a specific time, such as a timeframe set out in employment bereavement leave benefits. Mourning is expressed in various ways, including through rituals in cultures or religions.

Palliative Care – People living with serious illness

Palliative care is a health service that can be offered at any point during a serious illness, from the time of your diagnosis to the end of life. It aims to improve quality of life and can be given alongside treatments intended to cure the illness.

Palliative care addresses the physical (for example, pain and symptom management), psychological or social, cultural, and spiritual needs of individuals of all ages and supports their families and caregivers. It also includes grief support throughout the illness for all those affected, including family, friends, and caregivers, as well as bereavement after a loved one passes.

It may be delivered by a wide variety of care providers, including primary health care providers, specialists for your illness, and palliative care specialists. It can also be provided by others such as physiotherapists, social workers, spiritual leaders, or nutritionists. Palliative care can be provided in primary care, long-term care, home and community care, and other health settings.

A palliative approach to care integrates the core elements of palliative care into the care provided by non-specialists in primary care, long-term care and all mainstream health and social care services.

Video ads

The following stills and descriptions are used to illustrate and describe the videos shown to focus group participants.

Hero video ad [English]

The first scene is a middle-aged woman and a middle-aged man, her husband, sitting on a couch holding hands and watching television. The following scene is a different middle-aged woman at a kitchen counter with an older adult woman, her mother, sitting on the other side facing each other. They are talking and laughing. The next seen is a young woman brushing and braiding the hair of an older adult woman, her grandmother, who is sitting in a wheelchair and then the two are sitting next to one another smiling and laughing. The video scenes are followed by a screen that reads, "See how a palliative approach to care can improve quality of life. Canada-dot-CA-slash-palliative-dash-care" followed by a white screen with the government of Canada logo.

Hero video ad [French]

The video begins showing the backs of a middle-aged woman and a young man, her son, walking with their arms linked through a forest path. It then shows their faces smiling and laughing. The following scene shows them sitting inside at a table playing a game, and laughing. The following scene shows a different young man and middle-aged woman, his mother, sitting at a counter and going through old photographs, smiling, and laughing. The video scenes are followed by a screen that reads, "Voyez comment une approche palliative des soins peut améliorer la qualité de vie. Canada-dot-CA-slash-soins-dash-palliatifs" followed by a white screen with the government of Canada logo.

Grief video ad [English]

The scene begins with a dog and a middle-aged woman helping a middle-aged man, her husband, getting out of the shower. They look like they are feeling emotional distress and through the bathroom mirror you can see the woman caress the man and kiss his cheek. The next scene is the woman sitting on a couch and speaking to the camera being interviewed. The following scene shows the same woman and man sitting together on a couch watching television and holding hands. The camera then zooms in on their hands. The video scenes are followed by a screen that reads, "See how a palliative approach to care can help with grief support. Canada-dot-CA-slash-palliative-dash-care" followed by a white screen with the government of Canada logo.

Grief video ad [French]

The video begins with a middle-aged woman sitting on a couch speaking to the camera. It quickly shows a printed photograph of a toddler sitting on a counter and goes back to a different angle view of the woman sitting on the couch. It then shows a scene of her sitting at a table on a laptop speaking on what looks like a video call and then goes back to her on the couch speaking to the camera. The following shows her standing at a kitchen counter with a young man, her son, sitting beside her. They are laughing and looking through printed photographs of what look like the young man as a child. The video scenes are followed by a screen that reads, "Voyez comment une approche palliative des soins peut offrir du soutien face au deuil. Canada-dot-CA-slash-soins-dash-palliatifs" followed by a white screen with the government of Canada logo.

Storyteller video ad Mary Lee & Kelly

The video begins with an older adult woman sitting on a chair and speaking to the camera. It then goes to a middle-aged woman, her daughter, sitting in a chair facing the camera and speaking. The following scene shows the two women in the kitchen, the middle-aged woman is standing on one side of the counter, while the older adult woman is sitting on the other and drinking from a mug. They are talking, smiling, and laughing. The next scene shows the older adult woman speaking to the camera again. The video scenes are followed by a screen that reads, "See how a palliative approach to care can help with grief support. Canada-dot-CA-slash-palliative-dash-care" followed by a white screen with the government of Canada logo.

Storyteller video ad Guneet

The video begins with a young woman sitting on a couch and speaking to the camera. It then goes on to show a scene of her helping an older adult woman, her grandmother, who is sitting on the edge of a bed, put her shall around her shoulders and use her puffer. She then sits next to her, and they talk and smile with a lot of affection for one another. The video scenes are followed by a screen that reads, "See how a palliative approach to care can improve quality of life. Canada-dot-CA-slash-palliative-dash-care" followed by a white screen with the government of Canada logo.

Storyteller video ad Mike & Julie

The video begins with a middle-aged man sitting on a couch speaking to the camera. It then shows a scene of the man in a wheelchair, with a middle-aged woman, his wife, and their dog walking on the side walk towards the camera in the winter. The following scene shows the woman sitting on the couch speaking to the camera. The video scenes are followed by a screen that reads, "See how a palliative approach to care can improve quality of life. Canada-dot-CA-slash-palliative-dash-care" followed by a white screen with the government of Canada logo.

Storyteller video ad Biba

The video begins with a middle-aged woman sitting on a couch and speaking to the camera. It then goes to show a printed photograph of a toddler sitting on a counter with a cell phone and some other things. It then goes back to the woman speaking to the camera and then to a young man, her son, sitting at the counter and looking through a handful of printed photographs with the woman. They are smiling and laughing as they look at the old photographs of him as a child. The video scenes are followed by a screen that reads, "Voyez comment une approche palliative des soins peut améliorer la qualité de vie. Canada-dot-CA-slash-soins-dash-palliatifs" followed by a white screen with the government of Canada logo.

Storyteller video ad Ismael

The video begins with a young man walking on a paved pathway line with trees towards the camera. He is outside and it is winter. It then shows him walking through a parking lot of an apartment building and then cuts to him sitting inside on a couch and speaking to the camera. The following scene shows him sitting at a desk writing in a notebook and then again sitting and speaking to the camera. The following scene shows him sitting at a kitchen counter with a middle-aged woman, his mother, standing beside him. They are going through printed photographs of him as a child. The video scenes are followed by a screen that reads, "Voyez comment une approche palliative des soins peut améliorer la qualité de vie. Canada-dot-CA-slash-soins-dash-palliatifs" followed by a white screen with the government of Canada logo.

Storyteller video ad Alex

The video begins with a young man sitting on a couch and speaking to the camera. It then goes to a middle-aged woman, his mother, sitting and speaking to the camera. The following scene shows a few paintings leaning against a wall and the young man going through them and selecting one. It goes back to the woman sitting and speaking to the camera. The video scenes are followed by a screen that reads, "Voyez comment une approche palliative des soins peut améliorer la qualité de vie. Canada-dot-CA-slash-soins-dash-palliatifs" followed by a white screen with the government of Canada logo.

Social media ads

For the social media ads, two ads were shown related to palliative care and two were shown related to grief. Participants were initially shown each ad individually, then both ads as a pair, which followed with the potential additional messaging for both palliative are followed by grief.

Palliative care social media ad 1

Alt text: An image of a young woman sitting with an older adult woman, her grandmother, looking at each other as if having a conversation. The words "A palliative approach to care can improve quality of life" are superimposed in black over the lower left and centre of the image. Along the bottom is a white banner with the Health Canada logo in the bottom left corner and a government of Canada logo in the bottom right corner.

Palliative care social media ad 2

Alt text: An image of a young woman standing with her arm around an older adult woman, her mother, posing and smiling for the camera. The words "A palliative approach to care can start at diagnosis" are superimposed in black over the lower left and centre of the image. Along the bottom is a white banner with the Health Canada logo in the bottom left corner and a government of Canada logo in the bottom right corner.

Palliative care additional messaging

Ten campaign messages were displayed on screen for participants.

• From physical to psychological care, a palliative approach to care offers support to those living with serious illness.
• At every stage of serious illness, a palliative approach to care can provide support to patients and those closest to them.
• A palliative approach to care is holistic care.
• A palliative approach to care goes beyond end-of-life care.
• A palliative approach to care can help patients embrace life.
• A palliative approach to care can help patients and caregivers enjoy the things that are important to them.
• A palliative approach to care offers flexible supports.
• A palliative approach to care includes emotional, psychological, social and spiritual support.
• A palliative approach to care can support caregivers too.
• A palliative approach to care provides support to patients, families and caregivers.

Grief social media ad 1

An image of a middle-aged woman sitting and looking off into the distance. The words "A palliative approach to care can support people before and after a loss" are superimposed in black over the lower left and centre of the image. Along the bottom is a white banner with the Health Canada logo in the bottom left corner and a Government of Canada logo in the bottom right corner.

Grief social media ad 2

An image of a middle-aged woman sitting and looking down and off into the distance. The words "Everyone's experience of grief will be unique" are superimposed in black over the lower left and centre of the image. Along the bottom is a white banner with the Health Canada logo in the bottom left corner and a Government of Canada logo in the bottom right corner.

Grief additional messaging

Five campaign messages were displayed on screen for participants.

• Grief support services can help patients and caregivers during different stages of serious illness and after a loss.
• A palliative approach to care can connect patients and caregivers to local grief supports.
• There is no right or wrong way to grieve. Grief is unique to each person.
• A palliative approach to care can support people who are grieving.
• A palliative approach to care can include grief support for patients and caregivers.

Audio ads

The audio ads were presented to participants living with a serious illness. Each of the four audio ads are reminiscent of the video ads as we are reintroduced to Guneet, Mike & Julie, Biba, and Alex. The audio scripts for each ad were as follows:

Guneet audio ad

When I learned the term early palliative care, I learnt that it includes care for people like my grandmother, who have multiple illnesses that are ongoing and that are long-lasting.

That sort of connected those dots for me; that it was not necessarily just about caring for a person at the end of their life.

See how a palliative approach to care can improve quality of life.

Learn more at Canada.ca/palliative-care.

A message from the Government of Canada.

Mike & Julie audio ad

You hear palliative care; it's like your time is limited, but it's not the end, it's the helping hand we need.

It's to make sure we're not alone, that somebody is there who can guide us through a pretty scary process.

See how a palliative approach to care can improve quality of life.

Learn more at Canada.ca/palliative-care.

A message from the Government of Canada.

Alex audio ad

French

Le palliatif, ca mérite d'être connu d'un autre angle, d'un autre aspect. C'est quelque chose qui aide la personne dans sa maladie à reprendre le contrôle sur sa vie.

On ne peut pas passer à travers tout seul. C'est essentiel d'accepter l'aide que l'on nous donne.

Voyez comment une approche palliative des soins peut améliorer la qualité de vie.

Apprenez-en plus à Canada.ca/soins-palliatifs.

Un message du Gouvernement du Canada.

English

Palliative care deserves to be known from another angle, another aspect. It's something that helps people who are ill to regain control of their lives.

You can't get through it alone. It's essential to accept the help we're given.

See how a palliative approach to care can improve quality of life.

Learn more at Canada.ca/palliative-care.

A message from the Government of Canada.

Biba audio ad

French

Il est important de sensibiliser pour dire aux gens qu'il y a une différence entre les soins palliatifs et les soins de fin de vie et les soins palliatifs là, ça doit commencer au diagnostic.

C'est l'idéal d'avoir toutes ces équipes-là qui travaillent ensemble; c'est le meilleur encadrement possible.

Voyez comment une approche palliative des soins peut améliorer la qualité de vie.

Apprenez-en plus à Canada.ca/soins-palliatifs

Un message du Gouvernement du Canada.

English

It's important to raise awareness and tell people there's a difference between palliative care and end-of-life care. Palliative care has to start at diagnosis.

It's ideal to have all these teams working together; it's the best possible framework of care.

See how a palliative approach to care can improve quality of life.

Learn more at Canada.ca/palliative-care.

A message from the Government of Canada.

Interactive quiz

For the interactive quiz participants were presented a series of images depicting the interactive quiz and asked to imagine they were answering the quiz online themselves. The interactive quiz was displayed on multiple slides in the sequence of the designed quiz. The introduction and final page of the quiz were presented individually, while the questions and answers were presented as pairs on a slide.

Interactive quiz introduction page

A close up image of hands holding each other with a dark green decorative design superimposed with the words "is palliative care only for end of life? You may be surprised by the answer" in black over the centre of the image. Below is a green button that reads "take the quiz" with an arrow in white font. Along the top of the image is a white banner with the Health Canada logo in the top left corner and a government of Canada logo in the top right corner.

Interactive quiz question 1 and answer page

An orange and white decorative design with the words "question 1" in orange in the centre of the ad. Below it reads "palliative care can begin as soon as a series illness is diagnosed" in black font. Below there are two orange buttons, the one on the left reads "true" and the one on the right reads "false". Along the top of the image is a white banner with the Health Canada logo in the top left corner and a government of Canada logo in the top right corner.

A blue and white decorative design with the words "question 1" in blue in the centre of the ad. Below it reads "that's true" in large black font. Below in smaller black font, it reads "from the time of the diagnosis, core elements of palliative care can be offered by a range of care providers, including unpaid caregivers, through a 'palliative approach to care'. This helps improve quality of life, manage symptoms and more". Below there is a blue button that reads "next question" in white font. Below that it reads "learn more" in blue font. Along the top of the image is a white banner with the Health Canada logo in the top left corner and a government of Canada logo in the top right corner.

Interactive quiz question 2 and answer page

An orange and white decorative design with the words "question 2" in orange in the centre of the ad. Below it reads "palliative care is only for pain management" in black font. Below there are two orange buttons, the one on the left reads "true" and the one on the right reads "false". Along the top of the image is a white banner with the Health Canada logo in the top left corner and a government of Canada logo in the top right corner.

A blue and white decorative design with the words "question 2" in blue in the centre of the ad. Below it reads "that's false" in large black font. Below in smaller black font, it reads "palliative care addresses more than physical pain symptoms. It also includes supports for emotional, psychological, social and spiritual needs". Below there is a blue button that reads "next question" in white font. Below that it reads "learn more" in blue font. Along the top of the image is a white banner with the Health Canada logo in the top left corner and a government of Canada logo in the top right corner.

Interactive quiz question 3 and answer page

An orange and white decorative design with the words "question 3" in orange in the centre of the ad. Below it reads "palliative care includes supports for caregivers too" in black font. Below there are two orange buttons, the one on the left reads "true" and the one on the right reads "false". Along the top of the image is a white banner with the Health Canada logo in the top left corner and a government of Canada logo in the top right corner.

A blue and white decorative design with the words "question 3" in blue in the centre of the ad. Below it reads "that's true" in large black font. Below in smaller black font, it reads "palliative care can support a person living with serious illness, as well as their caregivers and those closest to them". Below there is a blue button that reads "next question" in white font. Below that it reads "learn more" in blue font. Along the top of the image is a white banner with the Health Canada logo in the top left corner and a government of Canada logo in the top right corner.

Interactive quiz question 4 and answer page

An orange and white decorative design with the words "question 4" in orange in the centre of the ad. Below it reads "patients can't benefit from a palliative approach to care or access palliative care if they're receiving other treatments to cure their illness" in black font. Below there are two orange buttons, the one on the left reads "true" and the one on the right reads "false". Along the top of the image is a white banner with the Health Canada logo in the top left corner and a government of Canada logo in the top right corner.

A blue and white decorative design with the words "question 4" in blue in the centre of the ad. Below it reads "that's false" in large black font. Below in smaller black font, it reads "palliative care is active care that can be received along with other treatments. It focuses on helping people live life as fully as possible". Below there is a blue button that reads "next question" in white font. Below that it reads "learn more" in blue font. Along the top of the image is a white banner with the Health Canada logo in the top left corner and a government of Canada logo in the top right corner.

Interactive quiz question 5 and answer page

An orange and white decorative design with the words "question 5" in orange in the centre of the ad. Below it reads "grief support helps people during different stages of a serious illness and after loss" in black font. Below there are two orange buttons, the one on the left reads "true" and the one on the right reads "false". Along the top of the image is a white banner with the Health Canada logo in the top left corner and a government of Canada logo in the top right corner.

A blue and white decorative design with the words "question 5" in blue in the centre of the ad. Below it reads "that's true" in large black font. Below in smaller black font, it reads "grief support is for people living with serious illness, their caregivers, and those closest to them both during an illness and after a loss". Below there is a blue button that reads "next" in white font. Below that it reads "learn more" in blue font. Along the top of the image is a white banner with the Health Canada logo in the top left corner and a government of Canada logo in the top right corner.

Interactive quiz final page

A video still of a younger woman sitting with her grandmother, holding hands, posing toward the camera with a play button superimposed on the still. Below it reads in black font "palliative care focuses on quality of life for people living with serious illness, their caregivers and those closest to them. It can help people understand their illness, manage symptoms, support emotional, psychological, social and spiritual needs, and help with grief support". Below is a green button that reads "learn more" in white font.