Decisions and Decisional Needs of Canadians From all Provinces and Territories During the COVID-19 Pandemic: Population-Based Cross-sectional Surveys

Introduction

During the COVID-19 pandemic, never before had Canadians made health-related decisions in the context of so much uncertainty. Health care decisions were complex, with limited, rapidly changing evidence and evolving public health directives [1,2]. Concurrently, health services shifted from in-person to virtual delivery and emergency department visits increased after the first wave [3-5]. These circumstances are perfectly fit for shared decision-making, a process between patients and clinicians that relies on the best evidence available and what matters most to patients. However, due to unique challenges with communicating risk, lack of nonverbal communication, and less meaningful patient involvement experienced during the pandemic, it may have been possible that Canadians were inadequately involved in health-related decisions [2,6,7]. When patients are inadequately involved in health decisions, there are more harms from choosing ineffective options, health care system waste, poor patient experiences, more litigation, and higher inequities [8,9]. This is why identifying Canadians decision-making needs was of uttermost importance in order to be able to provide person-centered care, achieve improved health outcomes, and inform future pandemic preparedness.

Decisional needs are deficits that can adversely affect the quality of decisions [10]. A quality decision is informed with the best-available evidence and based on patients’ values for features and outcomes of options. A previous systematic review of 45 decisional needs assessment studies included 2 population surveys that identified 75 decisions (including 16 social decisions) and 43 clinical studies that focused on 29 specific health decisions [10]. Common decisional needs included decisional conflict, inadequate knowledge of the options (including benefits, harms), unclear values, and limited support and resources [10,11]. Decisional conflict refers to “uncertainty about a course of action when choice among competing options involves risk, regret, or challenge to personal life values” [12]. Those who experience more difficultly with decision-making are living with a serious or chronic illness, are immunocompromised, belong to linguistic minorities, have lower education, are passive in decision-making, or make a decision on behalf of someone else (parents and caregivers) [13-19]. None of the 45 studies from 7 countries were focused on decision-making needs during pandemics [10]. A recent cross-sectional study of 4905 Canadians aged 18-40 years reported that factors associated with vaccine hesitancy are negative attitudes toward vaccines in general; COVID-19 conspiracy theory beliefs; distrust of the government; and a low income, low education, or unemployment [20]. Canada was no exception, as little was known about its health-related decision-making experience during the COVID-19 pandemic. Therefore, we sought to determine the type of decisions and decisional needs of Canadians during the first year of the COVID-19 pandemic.

Methods

Study Design

Our team of researchers and knowledge users (patients, clinicians) conducted 2 population-based cross-sectional surveys using Leger’s consumer panel. Having patients and clinicians as equal partners on the team was done to ensure the study yielded relevant findings [21]. Patients were on the executive research team coleading the study (author CL who is immunocompromised), and author MS stimulated the research topic. Both were engaged in all study aspects. Together, we identified the research objectives, outcomes, procedures, and deliverables for the funded proposal. Next, they were involved in guiding the study. We used the CHERRIES (Checklist for Reporting Results of Internet E-Surveys) guideline [22].

Setting

The survey was conducted in Canada during the third wave of COVID-19 [23]. During the first wave of COVID-19 in January-June 2020, 80% of the COVID-19–related deaths occurred in long-term-care homes, and governments issued stay-at-home orders and travel restrictions [24]. Masks became mandated for use in indoor spaces in July 2020. The second wave of COVID-19 started in November 2020 and the third wave in March 2021. When the hospitals became overwhelmed during the third wave, with a high impact on intensive care units, governments reissued a stay-at-home order [23]. COVID-19 vaccines were initially approved by Health Canada in December 2020, with priority for health care workers, Indigenous peoples, the elderly living in group settings, and others at higher risk (eg, people with cancer, with organ transplants, or undergoing dialysis). Vaccination gradually opened to adults in spring 2021 and to children (ages 5-12 years) in fall 2021 [25]. Although the AstraZeneca vaccine was approved for use on February 26, 2021, the rate of vaccine-induced immune thrombotic thrombocytopenia was of concern (1 in 60,000; April 2021). Governments continued to recommend the AstraZeneca vaccine until June 2021 because Canada was in the third wave of infections and there was insufficient supply of messenger RNA (mRNA) vaccines [23].

Recruitment

We recruited 2 groups of participants: (1) adults aged 18 years or older who received or were receiving any health services in the past 12 months for themselves (labeled “adults”) and (2) adults aged 18 years or older who were responsible for children or seniors aged >65 years with cognitive impairment who received or were receiving any health services in the past 12 months (labeled “parents/caregivers”). Leger recruited participants through its consumer panel titled “Leger Opinion (LEO) Panel,” which has about 400,000 Canadians across 10 provinces and 3 territories. The panel includes data on age, gender, and region that can be used for sampling and quota management. At the onset, specific quotas by age, gender, and region were set based on the Canadian population data published by Statistics Canada [26]. Leger monitored throughout the recruitment phase, and sampling was adjusted to ensure the data collected were representative. For example, if a certain cohort was underrepresented, sampling was adjusted to recruit more respondents falling within that cohort. There was no weighting applied to the data after being collected. Respondents received a personalized email containing a unique URL link to the survey. The email invite said, “LEO wants to hear from you!” and it did not state the exact survey topic.

Survey Instrument

Adapted from previous surveys in Canada [13,14,27], questions were based on the Ottawa Decision Support Framework [11]. Questions from instruments with good reliability and validity included the Decisional Conflict Scale (DCS) [12], the Decision Regret Scale (DRS) [28], and Strull’s roles in decision-making [13]. The survey enquired about health-related decisions adults and parents/caregivers faced during the past 12 months, factors influencing decision-making, trusted information sources, and sociodemographics according to the PROGRESS (place of residence, race/ethnicity/culture/language, occupation, gender/sex, religion, education, socioeconomic status, and social capita) framework [29,30]. To collect data on a broader range of participants’ characteristics that may stratify health opportunities and outcomes due to discrimination [29,30], we also asked respondents to self-identify if they had lived experience as a member of a marginalized group defined as disabled or caregiver of a person with a disability, gender diverse (eg, agender, nonbinary, transgender, cisgender), intersex, LGBTQ+ (lesbian, gay, bisexual, pansexual, transgender, queer, two-spirited, questioning), Indigenous, racialized (eg, person of color), neurodivergent (eg, attention deficit hyperactivity disorder [ADHD], autism, dyslexia), or a marginalized group not listed. Respondents were initially asked to list all the decisions made in the past year and then pick 1 difficult decision for the remaining questions. A difficult decision was defined as having more than 1 option and no clear best option. The online survey, available in English or French, screened eligibility and included 32 questions (Multimedia Appendix 1). Two random test questions were used to ensure respondents were not trying to speed through the survey, and the survey stopped for those who clicked a wrong response on both.

Respondents received 1 question per screen and pressed “continue” to proceed. They could not return to previous screens to change responses. To avoid missing responses, no questions could be skipped. Up to 3 reminders were sent to those who started but did not complete the survey. To avoid multiple entries, respondents were assigned a unique identifier linked to their LEO account; if they tried to complete the survey again, they received an error message.

The English and French versions were pretested by members of our team, including patient partners. On May 18, 2021, we field-tested the surveys with 139 adults and 26 parents/caregivers to monitor completion time (adults: ~10 minutes; parents/caregivers: ~9 minutes) and potential problems with surveys, including predefined skip logic. Given no changes were made to the surveys based on field testing, the collected data were retained.

Sample Size

Based on our previous research [13,31,32], sample sizes of 1500 adults and 500 parents/caregivers were adequate to estimate proportions with significant decisional conflict (SDC) associated with decision delay. SDC is defined as a total score of >37.5 out of 100 on the DCS based on 253 studies [33] using a 2-sided 95% CI with a margin of error of +1.80% or +3.85% when the estimated proportions are 0.15 or 0.26, respectively [34,35]. This is the most severe cutoff; sensitivity analyses were performed with a more relaxed cutoff of 25, also sometimes seen in the literature (data not shown), but we privileged a more severe cutoff. This means it could have been showing more people with SDC. To account for an anticipated 10% response rate, target sample sizes of adults and parents/caregivers were 15,000 and 5000, respectively.

Statistical Analysis

We classified respondents into adults who made a health-related decision for themselves (adults) or made a decision on behalf of a child or a senior with cognitive impairment (parents/caregivers). Next, we used descriptive statistics to identify decisions and described decisional needs using the Ottawa Decision Support Framework for each group (adults and parents/caregivers) [10]. We classified respondents as having SDC [36], and for those who had made the decision, we classified respondents as having significant decision regret based on a cutoff of >25 out of 100 on the DRS [37].

Ethical Considerations

The University of Ottawa research ethics board approved our study (H-03-21-6752). Invitees provided study consent at the start of the online survey and only initiated the survey questions after clicking the link consenting to participate. Respondents voluntarily answered questions and were guaranteed confidentiality. Leger offered an incentive of 2000 points (equivalent to CA $1.60, or US $1.18) to complete the survey.

Results

Respondent Details

From May 18 to June 4, 2021, 14,459 adults and 6542 parents/caregivers were invited to participate (Figure 1). The view rate (unique survey visitors/unique survey invitees) was 15.5% (2236/14,459) and 28.3% (1850/6542), respectively. The participation rate (unique visitors who consented to participate/unique survey visitors) was 69.3% (1549/2236) and 28.7% (531/1850). The completion rate (users who completed the survey/users who consented to participate) was 97.3% (1507/1549) and 95.1% (505/531), respectively. Among those who completed the surveys, we removed respondents if they did not identify a difficult health decision. After reading open text describing options, 36 were moved to the adult database and 16 were moved to the parent/caregiver database.

There were 1454 adults and 438 parents/caregivers included in the analysis. The survey was completed in English (1598/1892, 84.5%) or French (294/1892, 15.5%). Respondents represented a range of ages, education levels, civil statuses, ethnicities, and annual household income (Table 1). Of 1892 respondents, 541 (28.6%) self-identified as members of marginalized groups.

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Decisions

Health-related decisions, in order of frequency, were about COVID-19 vaccination, managing a health condition, social COVID-19 decisions (masking, limiting contacts), mental health care or addiction treatment, medication, surgery, pain management, health care for COVID-19 (testing, seeking care for symptoms), stay at home or move to an assisted care facility (eg, nursing home), pregnancy, birth control, staying safe at home (eg, adapt or retrofit home), and end-of-life care (Table 2). Decisions were similar when respondents were asked to pick a single decision described as more difficult, with the exception of health care for COVID-19, which a few rated as difficult. Other single decisions for caregivers were about moving a family member to/from a retirement or nursing home and stopping them from driving a car. Decisions (adults vs parents/caregivers) were within the past month (318/1318, 24.1%, vs 70/366, 19.1%), 1-6 months (524/1318, 39.8%, vs 134/366, 36.6%), 6-12 months (307/1318, 23.3%, vs 97/366, 26.5%), or no response (169/1318, 12.8%, vs 65/366, 17.8%).

Decisional Needs

Of 1454 adults and 438 parents/caregivers, 323 (22.2%) and 95 (21.7%), respectively, had SDC (Tables 3 and 4). Decisions, in order of frequency, for adults with SDC were mental health care, managing a health condition, taking medications, pain management, and COVID-19 vaccination (Figure 2). Decisions for parents/caregivers with SDC were COVID-19 vaccination, managing a health condition, health care for COVID-19, and mental health care.

Respondents experiencing SDC were more likely to feel uninformed (mean 44, SD 18.6, vs mean 18, SD 14.3, out of 100), have unclear values (mean 45, SD 20.3, vs mean 18, SD 14.6), feel they made an ineffective decision (mean 48, SD 16.1, vs mean 16, SD 13.3), and have decision regret (mean 41, SD 17.5, vs mean 16, SD 15.7) compared to those not experiencing SDC. In addition to feeling worried about choosing the wrong option (193/418, 46.2%), respondents experiencing SDC identified the following factors as making the decisions more difficult: public health restrictions due to COVID-19 (133/418, 31.8%), difficulty separating misinformation from scientific evidence (113/418, 27.0%), information overload (107/418, 25.6%), and no or limited access to information on the decision (97/418, 23.2%); see Table 3 for all respondents. Adults identified difficulty discussing the decision with clinicians (85/323, 26.3%). Parents/caregivers identified difficulty discussing the decision with significant others (eg, family, friends; 22/95, 23.2%).

Of 1318 (90.6%) adults and 366 (83.6%) parents/caregivers who made a decision, 353 (26.8%) and 125 (34.2%), respectively, had decision regret (Table 4). Those facing mental health care decisions had higher decision regret (mean 32.0%, SD 46.8%). Adults (322/1318, 24.4%) and parents/caregivers (77/366, 21.0%) reported not getting their preferred option.

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Role in Decision-Making

Most respondents indicated an active role in making the decision either alone (768/1318, 58.3%, adults vs 181/366, 49.5%, parents/caregivers) or after considering the opinion of their clinician (348/1318, 26.4%, adults vs 105/366, 28.7%, parents/caregivers). Few decided together with their clinician (148/1318, 11.2%, adults vs 63/366, 17.2%, parents/caregivers) or deferred to their clinician (54/1318, 4.1%, adults vs 17/366, 4.6%, parents/caregivers). If asked to make the decision again, most preferred an active role (1067/1318, 81.0%, adults vs 264/366, 72.1%, parents/caregivers) or together with their clinician (218/1318, 16.5%, adults vs 83/366, 22.7%, parents/caregivers).

Trusted Information Sources

Respondents indicated that trustworthy information sources were health professionals (1190/1454, 81.8%, adults vs 323/438, 73.7%, parents/caregivers), Health Canada (931/1454, 64.0%, adults vs 273/438, 62.3%, parents/caregivers), and provincial health departments (755/1454, 51.9%, adults vs 211/438, 48.2%, parents/caregivers). Fewer respondents trusted information from specific health organizations (583/1454, 40.1%, adults vs 167/438, 38.1%, parents/caregivers), consumer/patient organizations (265/1454, 18.2%, adults vs 79/438, 18.0%, parents/caregivers), companies that produce health information (199/1454, 13.7%, adults vs 49/438, 11.2%, parents/caregivers), or health insurance companies (99/1454, 6.8%, adults vs 43/438, 9.8%, parents/caregivers). Those experiencing SDC and decision regret were less trusting of these sources (Table 5).

Discussion

Principal Findings

In the first year of the pandemic, the most frequent decisions identified by Canadians were about COVID-19 vaccination, managing a health condition, social COVID-19 decisions, mental health care, medication treatments, and caregiver decisions about moving family members to or from residential facilities. One in five respondents had SDC, and a third reported decision regret. Factors making decisions more difficult were public health restrictions due to COVID-19, information overload, difficulty separating misinformation from scientific evidence, and difficulty discussing decisions with clinicians. Demographics of and the types of decisions made by respondents indicating iniquities above a level of 30% differences were ethnicity and mental health, respectively. The most trusted information sources were health care professionals and governmental sources. Our results led to the following observations:

• Respondents described 2 broad types of decisions, COVID-19–specific decisions and “routine” health-related decisions influenced by the pandemic or pandemic-related changes to health care services (eg, virtual care). When respondents were asked to focus on 1 difficult decision, some COVID-19–related decisions were selected less often and these decisions were more likely to have been influenced by mandatory public health regulations (eg, mask wearing in public indoor spaces, COVID-19 testing before an exposed child goes to school) [1,6]. However, the common decision about COVID-19 vaccination, selected by those experiencing SDC, would have been influenced by emerging scientific evidence and changing recommendations from Canadian public health officials [38]. COVID-19 vaccination became available to Canadian adults 5 months prior to the survey, with priority for frontline health care workers, the elderly in residential care, and Indigenous peoples [39]. In addition, 2 months prior to the survey, 4 vaccines were approved in Canada and public health officials recommended vaccination for adults and encouraged pregnant or breastfeeding persons to make shared decisions with their clinicians [38]. Decisions were being made when COVID-19 misinformation was spreading rapidly on social media, health care services were mostly virtual, and risk communication was also challenged with reports that the AstraZeneca vaccine caused rare blood clots [2-4,40-43]. In fact, misinformation also influenced uptake of the influenza vaccine in the United Kingdom [43].
• Many respondents reported decisional conflict and were worried about choosing the wrong option, a known manifestation of decisional conflict [33,44]. The 22.2% who reported SDC in our survey using the 16-item measure of decisional conflict were less than the 59% who reported being unsure about what to choose (1-item measure of decisional conflict) in the 1999 population-based study of 635 Canadians [17]. Another study conducted in March 2020 prior to the COVID-19 pandemic reported that 14.6% of 460 Canadian adults aged 65 years and older receiving home care services had SDC and common difficult decisions were about housing [14]. The highest proportion of respondents experiencing SDC in our study were making mental health care decisions. This was not surprising, given mental health has been impacted the most during COVID-19 [45,46]. Respondents reporting SDC highlighted unmet decisional needs requiring targeted support to address underlying modifiable factors [11]. Effective interventions for addressing decisional conflict are patient decision aids [11,47]. During our survey, 3 publicly available decision aids specific to COVID-19 were available (eg, moving a loved one from a retirement or nursing home, vaccination for persons who were pregnant or breastfeeding) [48-50]. However, not all information is accessible. Racialized and Indigenous Canadians described that the barriers to understanding COVID-19 public health information were the use of unfamiliar medical terminology, limited to English or French, and requiring technology to access the information (eg, the internet, television) [51]. Hence, our findings indicate the importance of monitoring and better supporting those experiencing SDC with plain-language interventions designed to ensure accessibility for all Canadians.
• For respondents who made a decision, a third reported decision regret. Decision regret was previously reported in 54% of 932 Canadian caregivers of seniors receiving health care services in their home in February 2020 [27]. Those with decision regret in both studies had SDC as well as a mismatch between their preferred option and the decision made. Decision regret is associated with lower satisfaction, lower quality of life, and decisional conflict [28]. Although regret can be managed by using interventions to ensure a realistic understanding of options and expectations of outcomes [11,52], our findings showed that respondents who were experiencing decision regret had lower levels of trust in the information provided by national, provincial, or local organizations. In addition, their decisions were influenced by information overload, difficulty separating misinformation from scientific evidence, and difficulty believing scientific evidence. Another survey reported that vaccine-hesitant Canadians aged 18-40 years were influenced by conspiracy theories and a distrust of governments [20]. Furthermore, protests against public health regulations indicate high levels of distrust of COVID-19 information [53]. This highlights the need to find ways to correct misinformation and help people make informed decisions [42,43]. More importantly, as we know that decision regret may lead to more litigation/complaints, we cannot completely exclude that this may be a mechanism by which there is an increasingly fractured society, with increasingly more Canadians feeling deceived by public officials, including public health officials.
• Our surveys found more patient-controlled decision-making compared to previous surveys [6,17]. We are unsure whether these findings are related specifically to the context of the COVID-19 pandemic or a change in Canadians’ roles. Half of the respondents made their decisions alone, but some preferred a more collaborative role with their clinicians. Our findings are higher than the 29% who decided alone in the 1999 Canadian survey [17] and different from a survey of 1061 Germans who preferred clinician-led decisions for hypothetical COVID-19 situations [6]. A few respondents (<6%) in our study had their clinicians make the decision for them or their clinicians make the decision after considering the respondents’ opinion. Another consideration is that most health care services were virtual during the pandemic [3,7] and likely impacted roles in decision-making.
• Lastly, we found demographics and types of health-related decisions showing iniquities among Canadians, mostly ethnicity and mental health. As our health care system is espousing the quintuple objective (better patient outcomes, better patient experiences, better efficiency, better health team well-being, and more equity [54,55]), this should be resonating in public health policies in terms of future interventions targeting the most vulnerable people in our society.

Strengths and Limitations

The involvement of knowledge users on the study team was beneficial, and they guided all aspects of this study, including survey design, interpretation of findings, and drafting of results. No negative effects of involving knowledge users were encountered. Our view rate of 15.5% for adults and 28.3% for parents/caregivers was comparable to the typical rate for online surveys of 10%-20% [27,56-58]. In addition, the geographic distribution across provinces and territories was consistent with Canadian distribution [59].

With regard to limitations, our data may be subject to recall bias, given respondents were asked to identify a difficult decision made within the previous year. Second, it would have been easier to compare findings with the 1999 survey had we used “facing a complex health decision” as an eligibility criterion [17]. However, we were interested in all decisions (including those with any level of SDC or decision regret) for those who had interactions within the health care system. Compared to Canadian census data, fewer respondents had high school education or less (33.7% invited, 20.5% participated, 44.8% census) and were from the Canadian territories (0.2%-0.4% invited, 0.5% from Yukon participated, 0.1% census); see Multimedia Appendix 2. Finally, the question about costs influencing the decision preceded the question asking to list options, and some only listed options related to costs.

Conclusion

Our survey of Canadians identified COVID-19–related decisions that emerged during the first year of the pandemic and how the pandemic influenced other health-related decisions. Many adults, parents, and caregivers had unmet decision-making needs, resulting in SDC and decision regret. Factors making decisions more difficult were public health restrictions due to COVID-19, information overload, difficulty separating misinformation from scientific evidence, and difficulty discussing decisions with clinicians. Most Canadians made the decisions on their own, with few sharing the decisions with others. Canadians need their decision-making needs recognized for providing person-centered care to achieve improved health outcomes and to inform future pandemic preparedness.