Decisions and Decisional Needs of Canadians From all Provinces and Territories During the COVID-19 Pandemic: Population-Based Cross-sectional Surveys
Bibliographic record
Abstract
BACKGROUND: Never before COVID-19 had Canadians faced making health-related decisions in a context of significant uncertainty. However, little is known about which type of decisions and the types of difficulties that they faced. OBJECTIVE: We sought to identify the health-related decisions and decisional needs of Canadians. METHODS: Our study was codesigned by researchers and knowledge users (eg, patients, clinicians). Informed by the CHERRIES (the Checklist for Reporting Results of Internet E-Surveys) reporting guideline, we conducted 2 online surveys of random samples drawn from the Leger consumer panel of 400,000 Canadians. Eligible participants were adults (≥18 years) who received or were receiving any health services in the past 12 months for themselves (adults) or for their child (parent) or senior with cognitive impairment (caregiver). We assessed decisions and decisional needs using questions informed by the Ottawa Decision Support Framework, including decisional conflict and decision regret using the Decision Conflict Scale (DCS) and the Decision Regret Scale (DRS), respectively. Descriptive statistics were conducted for adults who had decided for themselves or on behalf of someone else. Significant decisional conflict (SDC) was defined as a total DCS score of >37.5 out of 100, and significant decision regret was defined as a total DRS score of >25 out of 100. RESULTS: From May 18 to June 4, 2021, 14,459 adults and 6542 parents/caregivers were invited to participate. The invitation view rate was 15.5% (2236/14,459) and 28.3% (1850/6542); participation rate, 69.3% (1549/2236) and 28.7% (531/1850); and completion rate, 97.3% (1507/1549) and 95.1% (505/531), respectively. The survey was completed by 1454 (97.3%) adults and 438 (95.1%) parents/caregivers in English (1598/1892, 84.5%) or French (294/1892, 15.5%). Respondents from all 10 Canadian provinces and the northern territories represented a range of ages, education levels, civil statuses, ethnicities, and annual household income. Of 1892 respondents, 541 (28.6%) self-identified as members of marginalized groups. The most frequent decisions were (adults vs parents/caregivers) as follows: COVID-19 vaccination (490/1454, 33.7%, vs 87/438, 19.9%), managing a health condition (253/1454, 17.4%, vs 47/438, 10.7%), other COVID-19 decisions (158/1454, 10.9%, vs 85/438, 19.4%), mental health care (128/1454, 8.8%, vs 27/438, 6.2%), and medication treatments (115/1454, 7.9%, vs 23/438, 5.3%). Caregivers also reported decisions about moving family members to/from nursing or retirement homes (48/438, 11.0%). Adults (323/1454, 22.2%) and parents/caregivers (95/438, 21.7%) had SDC. Factors making decisions difficult were worrying about choosing the wrong option (557/1454, 38.3%, vs 184/438, 42.0%), worrying about getting COVID-19 (506/1454, 34.8%, vs 173/438, 39.5%), public health restrictions (427/1454, 29.4%, vs 158/438, 36.1%), information overload (300/1454, 20.6%, vs 77/438, 17.6%), difficulty separating misinformation from scientific evidence (297/1454, 20.4%, vs 77/438, 17.6%), and difficulty discussing decisions with clinicians (224/1454, 15.4%, vs 51/438, 11.6%). For 1318 (90.6%) adults and 366 (83.6%) parents/caregivers who had decided, 353 (26.8%) and 125 (34.2%) had significant decision regret, respectively. In addition, 1028 (50%) respondents made their decision alone without considering the opinions of clinicians. CONCLUSIONS: During COVID-19, Canadians who responded to the survey faced several new health-related decisions. Many reported unmet decision-making needs, resulting in SDC and decision regret. Interventions can be designed to address their decisional needs and support patients facing new health-related decisions.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.002 | 0.005 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.002 | 0.004 |
| Science and technology studies | 0.003 | 0.001 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".