What influences members of marginalized communities to access testing for COVID-19?

Nov. 12

Demand for testing is down - why?

By Kandace Ryckman, Alexandra Piatkowski, and Hannah Carriere

COVID-19 testing rates in Ontario are down. Even for communities where the incidence of cases remains high and continues rising daily, like in Toronto’s North West and parts of Brampton, not as many people are getting tested. There’s no doubt that part of this effect is due to changing provincial criteria on who can get tested and general confusion on the part of the public of who needs to get tested.

But what do we know about the reasons that people chose to get tested in the first place? If we know why people do or don’t seek testing, how can we modify our approaches to reach those who need it?

We’ve dug into our community engagement data to help answer this question. This past summer, we spoke directly to residents in one of Ontario’s hardest hit communities, North Etobicoke, to better understand what influences people to get tested for COVID-19. We’ve included quotes so you can hear what residents had to say in their own words.

What influences people to get tested?

People differ in their willingness to get tested. The decision to get tested happens when the perceived benefits outweigh the perceived risks or harms. For many people we spoke to in the North Etobicoke community, the risks often outweighed the benefits.

For those who did choose to get tested, there was often a moment or an event where the perceived benefit increased to the point where the individual was willing to accept the potential risks. For example, the severity of symptoms increasing to the point where there was a need to seek formal health care services or the worry that a potential exposure to the virus may result in the individual spreading it to their family.

Benefits of getting tested

The decision to take action and get tested was directly tied to the belief that getting tested will be beneficial to the individual or to their loved ones. Here’s what we heard about the benefits of testing from the community…

Being very sick and wanting help/answers: “[The medical staff] also said I am a bit afraid of the COVID situation because you are having difficulty breathing - I want you to take the COVID test.”
Protecting others: “I made sure I didn’t expose my daughter to COVID, but so far we didn't have the virus or anything like this.”
Participating in societal norms/being a ‘good’ citizen: “I would definitely reach out to health services. If someone was suggesting I should get a test, I would definitely go get it and follow any quarantining.”
Reducing anxiety: When asked why they were getting tested (back in August 2020), 69% of residents accessing a community pop-up site said they were getting tested as a precaution or for their own peace of mind. Note that this benefit has dwindled as the province has put in place more strict guidelines on who is eligible for tests.

Risks of getting tested

The belief or perception that getting tested may result in negative or harmful experiences or consequences to the individual or to their loved ones keeps many people from getting tested. Here’s (the very long list of) what we heard on the risks of getting tested…

Fear of pain from the test: “I was hearing it was so bad, and that they will stick this long thing in your nose. I was really scared.”; “I had heard it is hitting your brain, that’s why I was crying. I didn’t want to experience it.”
Risk of getting COVID at the testing site: “Two weeks ago they were doing testing in our centre. Better not to go, not get exposed to germs. Not planning to go. Avoid as much as you can to go in crowds, especially strangers.”
Negative treatment or discrimination from providers: “She gave me her extension and then said I will take you out of the room and take you to the back side of the hospital because we don’t want you to go out the front side. I felt kind of like an animal in this room where she left me. And then no one was answering the phone. So another nurse had to help me because I couldn’t open the door. That experience - to lock the door and leave me? It was just weird. It wasn’t a good experience.”

Blame or shame for seeking help: “I spoke to the doctor and they asked ‘when did you first start to feel it? Why did you come so late if you felt it two days ago?’”
Testing positive and not being supported/cared for: “What are the supports in place for people who test positive? I have a friend who had it earlier, no one has followed up with her or anything like that…awful.”
Testing positive and facing economic consequences: “People don’t have sick time, time off to go get tested. What are the supports in place if individuals test positive. I think that will drive the testing.”
Testing positive and facing social stigma: “It’s like punishment for us, no one wants to come by. It’s like our fault.”
Testing positive and needing to self-isolate: “She asked if I am living alone. She said do you have your own room? You will have to isolate yourself for two weeks. That was really hard for me to listen to.”

Factors that influence the risk-benefit trade-off

We observed some modifying factors that influence the risk-benefit trade-off for certain members of the community. Often these factors influence some community members more strongly than others. In these instances, the benefits of testing would need to be stronger for individuals to be able to overcome these barriers and seek out testing.

Here’s what we heard from community members about the most salient modifying factors…

Access information about testing: People need access to accurate and timely information about when and how to get tested. Not just where the site is, but when they should get tested in the first place.

“Is there a cure for COVID at the present time? Hearing about vaccine, but that takes a long time. When someone gets testing, what is next step? If no cure, why get tested?”
“Even on the highway signs, call 1-800-COVID check so you remember it, like the 241 Pizza number so it would stick in case you need it. Doors at school, fridge tags, because everyone knows someone who is caring for someone. What if that person gets sick? What do they do to protect themselves? That’s the next level we need to go to.”
“I’m 69 and I have no idea where the local assessment center is.”

Physical access: People are more likely to get tested if the service is closeby and/or safe and affordable transportation to the service is provided. For most community members, travel to the hospital assessment centre is not realistic or feasible.

“When it comes to health services – people aren’t able to access a lot of services – it is not very walkable. Goal is a 10 minute walking distance.”
“Wait till the bus is emptier, use the bus all the time. Be really careful, stay away, and keep distancing. Horrifying experience.”

Culturally appropriate environments: For racialized and newcomer communities, the extent to which individuals have access to services in their preferred language, from providers who look like them, and/or understand their cultural context is important.

“Was there a translator there? They didn’t provide translation but my young children speak English.”
“How do testing results impact my immigration status or application? What happens if someone who is undocumented tests positive?”

Belief that outcome will change things: People are more likely to get tested if they think that results will impact their future behaviour or outcomes. Alternatively, people can be apathetic to getting tested if they don’t see how it will have an impact on themselves, their family, or community.

“Just do quarantine if you have any symptoms. Don’t worry about negative or positive, just do quarantine… Tested or not tested, quarantine yourself for 14 days.”

Trust in the system: People are more likely to get tested if they perceive or know that they will be cared for, properly supported, and treated with dignity from the institutions and practitioners within the health care systems.

“I have a mindset that we have to trust and I have trusted those guidelines and follow them properly. It wasn’t hard for me.”
“Some community members thought this is a disease designed to kill off the poor, [that the] swabs contaminated and would give them COVID”

Making testing equitable

An equity-based approach to testing needs to ensure that marginalized community members do not face barriers with respect to the modifying factors. It also means making sure the benefits outweigh the harms of getting tested. Doing this involves providing dedicated resources to have testing close to home, targeted messages and education campaigns, or other support for communities that have been hardest hit by the pandemic. Some of these factors are easier to address than others. For example, moving the testing site physically closer to the community might be a quick fix, but building trust with community members is a much larger and deeper task. If done properly, established trust can have positive lasting effects well beyond COVID-19.

What are you and your partners doing to ensure that the risks of getting tested do not outweigh the benefits for the hardest to reach members of your community? Share your strategies and tactics with us on social @health_commons.

Tools You Can Use

Insights report: Pandemic experiences in North Etobicoke (PDF)

Community-driven testing strategies for COVID-19 (PDF)

COVID-19 Response

Lauren Rabindranath