The effectiveness of public health interventions depends substantially on the degree of trust between community members and the institutions that are meant to serve them. Every action on the part of our institutions, and each interaction between health-care providers and patients, is either building or eroding trust in our health-care system.
Unfortunately, what the COVID-19 pandemic has both exposed and exacerbated is just how eroded that trust is, particularly for communities that feel the most disconnected from the health-care system and policy-makers.
Now, as parents are making decisions about vaccinating their children aged up to four years old against COVID-19, we are once again seeing how trust comes into play.
As of Sept. 22, only about 6 per cent of eligible children under the age of 5 in Ontario had had the shot – much lower than the uptake that had been expected by experts such as Ontario’s chief medical officer of health, Kieran Moore, according to a recent Canadian Press article. A survey conducted by Toronto Public Health between June 20 and July 6 indicated that 27 per cent of respondents said they were unlikely to vaccinate their children, with a further 22 per cent saying they were “somewhat likely,” “not very likely” or “don’t know” if they would.
To gain a deeper understanding of the data, Health Commons was asked by Peel Public Health to conduct interviews with parents of young children, exploring parents’ experiences of the pandemic, including their perspectives on the vaccines, willingness to vaccinate their children, what sources they trusted for health information and what can be done to mitigate barriers to equitable access.
We completed focus groups and one-on-one interviews with parents and caregivers in Brampton, Mississauga, Scarborough, Oshawa, Markham, Vaughan, Etobicoke, Toronto and Windsor. We have seen throughout the pandemic that communities most at risk of contracting COVID, as well as hospitalization and death, were also communities that expressed mistrust in the messages that were being propagated by public health authorities.
In these consultations, we sought participants who are typically not consulted including newcomers and those living in neighbourhoods with large concentrations of under-resourced populations. Those we engaged with self-identified as being from a range of ethnic backgrounds and languages spoken at home including Arabic, English, French, Gujarati, Hindi, Punjabi, Ukrainian and Urdu.
When we had spoken with families during earlier phases of the pandemic, we learned that a lack of information to help with decision-making was a main cause of vaccine hesitancy. In contrast, parents and caregivers we engaged with this time felt they had the necessary information to make informed choices and, having considered the evidence, had arrived at a conclusion they felt worked best for them and their families – not vaccinating their children between the ages of 0 and 4.
Parents don’t trust what the health-care system is telling them.
What we heard this time was something that should be very concerning to everyone: parents don’t trust what the health-care system is telling them.
Messages such as “Get the Vaccine – It’s Safe!,” “The Vaccines Are Well Studied” and “The Vaccine Will Protect You” aren’t resonating as they should because they often run counter to peoples’ lived experience. For example, parents who experienced adverse effects after their vaccinations said their experiences were dismissed by health-care providers and, because of this, worried that potential negative side effects their children could experience also wouldn’t be taken seriously. Further, many of the parents we spoke to reported personal or community stories of adverse events from the vaccine that led some to conclude that vaccines pose safety threats. Exacerbating this, parents felt the long-term risks of the vaccine were not known compared to the vaccines for common childhood diseases and emphasized the need to see longitudinal studies of at least five to 10 years.
Messages emphasizing self-protection also are no longer resonating. Many have reported contracting COVID after receiving the vaccine and losing confidence in its effectiveness. Several spoke of those who have been infected with or without the vaccine and felt it made no difference in the severity of outcomes. One frustrated parent told us, “Three times I’ve been vaccinated. Three times. My whole family has been vaccinated three times. Yet, we still all got COVID. And we have to go through it. So, my dad is still in the hospital now for two months on a ventilator. And the vaccines did not really, honestly, I don’t know what they have done … because we also caught it even being triple vaxxed.”
Perhaps most concerning, some parents reported that, since the pandemic, they feel health-care services have declined in quality and no longer trust their health-care providers. In some cases, this is precisely because of the messages they feel are being pushed on them. When asked “Where do you turn to get health information?” One parent answered, “Normally, I would say my doctor but, again, even they kind of push for certain things that I wouldn’t want. So, I’d get the opinion but not always follow through with it.” Another parent told us, “I don’t trust the health care system here … especially after COVID. I feel like it’s really bad.”
These experiences are shaping health-seeking behaviours. Continuing to push messages and approaches that do not resonate with people based on their lived experience and collective needs can exacerbate lack of trust in health professionals and policymakers. This ultimately impacts engagement in the social systems that keep us all connected and safe.
This shift is also happening in the U.S. where, alarmingly, it is starting to have an impact on parents’ willingness to have their children receive routine vaccinations that have been in place for decades. If this spreads, and once-eradicated childhood diseases are allowed to re-emerge, the impacts will be disastrous.
This trend has yet to find much traction in Canada but, given what we have learned from parents about COVID-19 vaccines, we shouldn’t be celebrating. What we need to do is recognize that we have important work to do, and that it all starts with genuinely listening to what parents are saying, meeting them where they are and putting real effort into understanding what is shaping their decision-making. In turn, this will shape our interactions with them as clinicians, providers and policy makers. Failure to do this will be nothing less than devastating to the health of communities and the health care system.