Trust in Public Health Measures: A Mixed Methods Study of Family Caregivers for People Living with Dementia During COVID-19
The dangerous and contagious nature of COVID-19 has necessitated drastic action by the Alberta government to place public health measures in an effort to reduce viral spread. This study investigates the level of trust held among family caregivers for people living with dementia in the province’s ability to make appropriate restrictions that mitigate both the extent and rate of infection. Six demographics of family caregivers for people living with dementia were examined: (a) age, (b) gender, (c) level of education, (d) residence in rural or urban communities, (e) Alberta Health Services zone, and (f) position on the care continuum. By analyzing the results with SPSS 27 data analysis software, the study found that although levels of trust in public health measures remain similar across the previously mentioned demographics, the percentage of respondents who reported “good” or “excellent” trust in the Alberta government to make COVID-19 public health measures was at 33.8%. Underlying reasons behind lower levels of trust were explored through a thematic analysis of qualitative data gathered from a long-answer survey question. This study highlights political priorities, perceived government inefficiency, mixed/unclear messaging, insufficient public health measures, and lack of transparency as degraders of trust in Alberta public health measures and has implications for how the province can regain trust in the midst of a global pandemic.
In December 2019, the first global case of COVID-19 was detected in Wuhan City, which has since evolved into a global pandemic. Over a year later, upwards of 22,400 Canadians have passed away as a result of contracting the virus, with another 850,000 infected as of March 2021. Of the total hospitalizations in Alberta, 27.8% of have occurred in patients over the age of 80. Now, more than ever, an evaluation of public perceptions of the Alberta government’s ability to handle and maintain effective communication in a major pandemic is needed—especially when looking at older and more vulnerable populations. An analysis of family caregivers for people living with dementia will shed light in this regard. Recent studies have found a disproportionate correlation between dementia and adults over the age of 65 who develop severe COVID-19. This is also confirmed by observational data from the International Severe Acute Respiratory and Emerging Infections Consortium. Seeing as dementia is a disease primarily affecting older adults, it is likely that this correlation is due to a variety of comorbidities. Frailty, in particular, can further exacerbate the risk of severe infection.
Healthcare has, historically, enjoyed relatively high levels of public trust in comparison with other essential sectors of society. This trust is paramount to the delivery of healthcare, and proper functioning of the healthcare system. It can, unfortunately, be taken for granted; leading to neglect in the ways to maintain and build trust with the public. Low levels of public trust in health measures has predicted associations with poorer patient outcomes and stronger behavioural reactions to an outbreak, and is becoming an area of increasing concern as countries around the world work to mitigate the effects of COVID-19 while preparing for any future global health crises. An examination of trust in public health measures among family caregivers for people living with dementia—a population significantly affected by the pandemic—is required. Focusing on caregivers’ experiences can gain greater insight into their perceptions of the Alberta government’s ability to devise strategic measures that combat COVID-19; ensuring these measures are fully understood and supported by the public, while potentially informing future policy and communication objectives.
The aim of this research is to explore caregiver perceptions of public health measures and messaging, relating these factors to trust in the government. Recent events featured by the media have led to significant public concerns regarding COVID-19-derived public health. These events include elected officials travelling internationally, stated vaccine hesitancy, and numerous rallies and protests denouncing COVID-19 or its associated public health measures.
Family caregivers for people living with dementia are struggling to provide the same levels of care during the pandemic as they were pre-COVID-19. Research from previous studies reveals that family caregivers have been impacted significantly by public health measures through decreased supports and resources. Because little work has been done to explore if caregivers have trust in these measures, this is an exploratory study.
Given the increasing media coverage on public resistance and dissatisfaction with public health measures, it is hypothesized that family caregivers, who rely on caregiving supports reduced because of these measures, will also express some level of dissatisfaction. In this study, “trust in public health measures” is used as a proxy for levels of family caregiver satisfaction or dissatisfaction in COVID-19 restrictions.
The hypothesized assumption is that public trust is generally low, with less than 25% of respondents indicating “good” or “excellent.” This trust will likely vary across demographic variables, shown by multiple Levene’s statistic values below 0.05. Because of recent events in the media, such as protests against the widespread use of certain public health measures like masks, I would anticipate a theme emerging from the thematic analysis to be a belief in conspiracy theories surrounding the lethality of COVID-19.
The participants of this study included 153 family caregivers for people living with dementia in the province of Alberta, Canada. All participants were over the age of 18, and self-selected. Informed consent was provided. Data used in this analysis has been derived from survey results of a parent study, Conducting a Gap Analysis of Family Caregivers’ Needs During a Global Pandemic, conducted by Dr. Gwen McGhan and Dr. Deirdre McCaughey at the University of Calgary. This study was approved by the University of Calgary’s Health Research Ethics Board (REB 20-0855). Research is active as of March 2021, with survey results still being collected. All data used in this project has been gathered from responses submitted on or prior to February 26, 2021. Participants completed the survey via the internet. The survey took about 20 minutes to complete. Participants were not directly compensated for their participation but were notified that data collected may help researchers learn more about supporting family caregivers for people living with dementia during the COVID-19 pandemic, as well as plan for future emergency events. The surveyed group was comprised mainly of women (79.1%), with a relatively even split between adults under the age of 65 and older adults (52.9%, 47.1% respectively). Most participants lived in Calgary (54.7%). Refer to Table 1 of the Data section to view participant demographics.
Trust in public health measures: Participants were asked to rate their trust in the Alberta government to make COVID-19 public health measures: How would you rate your trust in the Alberta government to make COVID-19 public health measures? The question used was adapted from the World Health Organization’s COVID-19 Snapshot Monitoring (COSMO) survey. Responses were measured on a 5-point Likert scale ranging from “very poor” (1) to “excellent” (5) (Likert, 1932). In the case of a response below “neutral” (3), which indicated a lower level of trust in public health measures, participants were directed to a secondary long-answer question asking about the reason behind their lack of trust in the Alberta government to make COVID-19 public health measures. The tested variable was described as “Trust in Three Categories,” with the categories being (a) high levels of trust, referring to Likert scale responses of “good” or “excellent,” (b) neutral trust, referring to Likert scale responses of “neutral,” and (c) low levels of trust, referring to Likert scale responses of “poor” or “very poor.”
Demographics: Six demographics were examined: age, gender, level of education, residence in rural or urban communities, Alberta Health Services zone, and position on the care continuum. It should be noted that position on the care continuum refers to the place of residence of a person living with dementia (e.g. long term care, assisted/supportive living).
Data was analyzed with the SPSS statistical package (27.0 Version). An independent variable t-test was utilized for the purpose of assessing the range of trust across a demographic category. Grouping variables were selected as specific demographic categories, with each category being assessed separately in an individual independent variable t-test. Defined groups used imputed values corresponding with subsections within a demographic variable (e.g. “male” and “female” as defined variables for gender). For demographics including more than two subsections, a one-way ANOVA (Analysis of Variance) was used to determine sum of squares, mean square, and Levene's statistic based on mean, trimmed mean, and median with and without adjusted degrees of freedom. The statistical analysis was conducted at 95% confidence level. A significance (Sig.) value less than 0.05 on Levene’s Test for Equality of Variances was considered statistically significant.
After collection and placement into a Microsoft Excel spreadsheet, data was analyzed using thematic qualitative analysis. This type of analysis was chosen for being an accessible and theoretically flexible approach to analyzing qualitative data. To ensure validity of the analysis, thorough examination of data occurred in three phases. Written responses for the long answer question were first reviewed multiple times to look for “recurring regularities'' (Merriam, 1998, p. 120) with significance to the study. The constant comparative method was then utilized, ensuring that different components of the data (e.g. emerging codes, categories, dimensions) were constantly compared with all other aspects to explore variations, similarities and differences in data. Responses were carefully reviewed and checked multiple times (Marshall & Rossman, 1989) before being assigned to one or more codes/themes. All themes were reviewed with a member of the parent study’s research team to ensure accuracy. Each emergent theme is listed on Table 2.
Quantitative results: All but one demographic, position on the care continuum, showed variances above 0.05 on the Levene's Test for Equality of Variances, and therefore presented with no statistical significance. The t-test for gender revealed a Levene’s statistic of 0.230. The t-test for age revealed a Levene’s statistic of 0.842. Of these groups, less homogeneity of variance in public trust could be observed in gender than in age. The ANOVA for position on the care continuum revealed a statistically significant Levene’s statistic of 0.027. All other demographics remained less heterogeneous. The ANOVA for Alberta Health Services zone revealed a Levene’s statistic based on mean of 0.367 The ANOVA for residence in an urban or rural community revealed a Levene’s statistic based on mean of 0.381. The ANOVA for level of education revealed a Levene’s statistic based on mean of 0.859. These values are shown in Table 3 and Figure 1. The frequency analysis showed 33.8% (cum. percentage) of participants reporting high levels of trust in the Alberta government to make COVID-19 public health measures, 31.7% (cum. percentage) identified as neutral, and 34.5% reporting low levels of trust.
Qualitative results: Eight distinct themes were identified as factors behind lower levels of trust in public health measures: (a) government priorities, (b) government inefficiency, (c) mixed/unclear messaging, (d) lack of transparency, (e) poor initial response, (f) inadequate vaccine rollout, (g) insufficient public health measures, and (h) COVID-19 skepticism. The most common theme to emerge in responses, government priorities, was coded with 27 out of 44 long answer responses, or 61.4%. Political figures were described with phrases such as “politically motivated” and “they don’t seem to know what they are doing.” Some responses centred around behavioural inconsistencies, in particular, politicians not adhering by COVID-19 restrictions and guidelines. Eight responses (18.2% of total) of this subtheme were identified, including statements like “officials follow their own rules,” and “MLAs [are] telling public not to travel but then multiple MLAs take foreign vacations.”
A second major theme, government inefficiency, was coded with 20 out of 44 long answer responses, or 45.5%. Of these, 35% (7 responses) were tied to a subtheme of perceived lack of input from healthcare professionals and researchers in policymaking. Examples include: "our public health officer is limited in the voice she has," and "they have been fighting with doctors, they do not listen to medical experts." Other responses cited poor government support, perceived disorganization, or similar factors as degraders of trust in public health measures.
The third major theme, insufficient public health measures, was coded with 17 out of 44 long answer responses, or 38.6%. Responses focused on inconsistent enforcement of public health measures and measures not being strong enough to be effective. Multiple responses mentioned air travel restrictions being too loose: "Their restrictions are not good enough . . . I know it is hard on the economy, but I think they should still be cancelling all flights in and out of Canada," and "they aren't enforcing the restrictions where they can . . . for example, when people leave [public spaces], and without masks, officers could be standing there ticketing each adult as they leave."
All themes coded with 25% or less of the collected data are considered minor themes. The five minor themes are mixed/unclear messaging, coded with 11 responses or 25% of the data, lack of transparency, coded with 11 responses or 25% of the data, poor initial response, coded with 8 responses or 18.2% of the data, inadequate vaccine rollout, coded with 7 responses or 15.9% of the coded data, and COVID-19 skepticism, coded with 9 responses, or 20.4% of the data.
Results point to family caregiver perceptions of inconsistency in actions and words on the part of the government, perceived lack of insight and input from healthcare professionals and researchers when formulating COVID-19 measures, and not enough consistency and enforcement of restrictions as underlying reasons behind a 66.3% rate of low or neutral trust in the Alberta government's public health measures.
TABLES & FIGURES
Table 1, Participant Demographics:
Table 2, Themes:
Table 3, Variances Within Demographics:
Figure 1, Variances Within Demographics:
As the provinces and territories of Canada are implementing measures to fight COVID-19, their efforts will be enhanced by understanding how family caregivers for people living with dementia perceive and evaluate trust in public health measures. The present study aims to provide reliable, high-quality data on trust in the government’s public health measures held by family caregivers for people living with dementia, especially given the effect public health measures had on resource use and access for these caregivers. In addition to theoretical and scientific implications, these results provide useful information on how best the province can make strategic decisions to ensure family caregivers have confidence in public health measures and feel supported in maintaining an effective caregiving routine, thereby ensuring care consistency for the person living with dementia they care for.
This study looked at frequencies of the demographics to determine that approximately one-third of study participants reported high trust in the Alberta government’s public health measures, with one-third reporting low trust and one-third as neutral. A thematic analysis of qualitative data indicated major themes of political hypocrisy, misplaced priorities, and government inefficiency as underlying factors behind low levels of trust. The statistical analysis suggests that trust in public health measures does not vary as a result of the analyzed demographics, with the exception of position on the care continuum. One possible explanation for the statistical significance of this demographic is tied to the rate at which COVID-19 has affected those living in long-term care homes, who may have risked exposure to the virus at higher rates than those living in a private household. The insignificance of all other demographics is very interesting, as this result is not usually supported by other research. Level of education, for instance, is shown to be directly proportional to level trust. The concept of trust in the province’s public health measures and perceived ability to minimize the spread of COVID-19 is important and must be factored into pandemic policymaking decisions. Studies have found confirmation that “trust in health agencies positively influenced people’s willingness to adopt recommended behaviour,” (Siegrist et al., 2014). The very nature of the virus creates an unprecedented strain on the healthcare system, with the combination of rapid spread and a high number of affected patients requiring intensive care. Now, more than ever, trust is a precious commodity for the government when urging the province of Alberta to abide by public health measures.
Limitations and Future Research: This study was completed with a sample size of 153 participants. Increasing the surveyed group could find more significant relationships from the data. The research could also be improved by ensuring a sample that is more representative of the population of family caregivers for people living with dementia in Alberta. This would allow researchers to test more demographic aspects; exploring the roles of factors such as race, income, and marital status in perceptions of COVID-19 public health measures. Researchers may also wish to further delve into some results of the study, examining the low variance of trust within demographics such as level of education, as this data is conflicting with other studies. Note that this data is not generalizable, as it pertains only to a specific group—family caregivers of people living with dementia. Additionally, research is specific to early 2021, as trust in public health measures has fluctuated greatly during the COVID-19 pandemic.
While the COVID-19 pandemic progresses and family caregivers are increasingly stretched in their caregiving roles, it is important to understand the levels of trust held among family caregivers in the ability of the Alberta government to make effective COVID-19 public health measures, and how that trust varies among members of different demographic populations. People living with dementia have been significantly affected by the COVID-19 pandemic and are at risk for severe complications of the virus and disruptions to their caregiving routine. Although there is little variance between demographics of family caregivers’ trust in public health measures, overall rates of lowered or neutral trust levels are at 66.3% of the surveyed group. This disproved the hypothesis, which anticipated lower levels of trust and more variation within demographics. Exploring caregivers’ experiences can help researchers and policymakers better understand their perceptions of the Alberta government’s ability to create COVID-19 public health measures that are well-understood and supported by the public.
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First of all, I would like to express my sincere gratitude to Dr. Gwen McGhan and Dr. Deirdre McCaughey, lead researchers for the Conducting a Gap Analysis of Family Caregivers’ Needs during a Global Pandemic study, for letting me take part in this incredible research. Further, I would like to thank Dr. Whitney Hindmarch and Ms. Kristin Flemons for guiding me through the quantitative and qualitative aspects of the research. I am so grateful for their kindness and support. Finally, a very sincere thanks to all the family caregivers for people living with dementia who participated in this survey.