JointHealth™ express   January 15, 2021

About the survey

ACE’s national survey looks at the student experience since the COVID-19 pandemic, which forced elementary and high schools and post-secondary schools to adopt new protocols and in some cases, close and move courses online. The survey asked participants to reflect on their online and in-person school experience during the pandemic, the COVID-19 safety measures taken by the education institution, what support or resources were available, and the learning challenges they experienced.

The information gathered in this survey will help ACE improve advocacy efforts and support for people living with autoimmune arthritis and their households. By sharing the results of this survey, ACE hopes to increase awareness for the concerns and challenges that the arthritis patient community is facing while navigating the school year and making decision that impact quality of life, health, education and safety.

The survey was open from September 24 through to November 30, 2020 and was open to households impacted by autoimmune arthritis. The survey contained 18 questions and two open-ended questions.

The majority of people (40%) who answered ACE’s survey were parents/caregivers with autoimmune arthritis who live with a student attending school. Thirty-three percent were parents/caregivers of a student living with autoimmune arthritis who was attending school. Twenty-eight percent of respondents were students with autoimmune arthritis themselves. Approximately 45% of the respondents indicated they are answering the survey based on their post-secondary education experience, followed by elementary (28%), secondary (17%), and middle school (11%).

Overall satisfaction of the school experience

On a sliding scale of five (very comfortable, comfortable, neutral, uncomfortable, very uncomfortable), 50% of survey respondents felt either comfortable or very comfortable with the way the student is attending school, 22% felt uncomfortable, 17% felt very uncomfortable, and 11% felt neutral. Generally, survey respondents were more likely to feel uncomfortable when they were attending school in-person compared to when they were attending school online.

Challenges with in-person learning

Commenting on attending school in-person, respondents cited that the most challenging aspects were maintaining physical distance while socializing with friends (33%) and dealing with fear, anxiety, loneliness or depression (28%).

Challenges with online learning

A majority of respondents had sufficient access to a reliable computer, but several respondents cited inadequate access to the internet and technical challenges accessing videoconferencing software.

The most challenging aspects of attending school online were dealing with fear, anxiety, loneliness or depression (22%), maintaining good relationships with household members (17%), and feeling social disconnect with friends and teachers (17%).

Ultimately, our findings identified mental health as a considerable challenge for students during the COVID-19 pandemic, regardless of whether they are attending school in-person or online.

Respondent comments and observations

ACE asked two optional open-ended questions at the end of the survey. The first one asked respondents to comment on personal challenges and the second questions asked about what could improve their learning experience during a pandemic.

Upon review of the answers, common suggestions included: improved mental health support for kids and families, keeping kids and families informed before and during school, and improving or preparing kids for changes that arise from the COVID-19 safety measures.

Sample comments:

Grandparent of an elementary school student living with arthritis, commenting on key challenges:

“I am responding on behalf of my granddaughter who was paralyzed with anxiety and depression suddenly and would not attend school or socialize outside her home. Her school mandated she stay in class for the entire day, masked, except to eat and they were not allowed outside except to go home. It is like a prison and obviously affected her greatly.”

Parent of a high school student living with arthritis, commenting on suggestions for improvement:

“Funding from the government to pay for mental health supports from our child’s existing team. Distancing requirements in schools, with monitoring by staff. Option for hybrid model. More transparency in reporting of cases to families. Improved ventilation.”

University student living with arthritis attending school online, commenting on key challenges:

“This school term has been more difficult and stressful since the switch to remote learning during the pandemic. I’ve found it difficult to juggle an onslaught of online lectures and assignment deadlines and constantly play catch-up between courses, all while isolated from peer support.”


As schools re-opened in the fall of 2020 in Canada, the shape of schooling has been undergoing fundamental change, especially in provinces where whole school systems are creating an option of full-time online learning. In Ontario, there are some school boards where half the students are pursuing their studies online from home. Since September, schools are facing intermittent closures due to outbreaks, and all provinces face the risk of further lockdowns requiring remote learning to be an important back-up plan.

It is likely these disruptions will produce short- and long-term impacts on student learning and wellbeing. The learning challenges and health risks for students living with autoimmune arthritis are even more pronounced. In Canada, working with public health officials, there have been steps taken to share information about the disease status of students and staff in the return to school. But right now, what is missing is data about whether and what students are learning, and how this crisis is affecting their development.

ACE’s survey identifies the need to understand the particular challenges students living with chronic disease like autoimmune arthritis face and what supports work to meet these challenges.

It is important to note that many of our survey respondents were not given the opportunity to make their own schooling decisions and had to follow regional policies, regardless of their personal comfort or discomfort with certain schooling options. However, when students and parents/caregivers living with autoimmune arthritis are given the opportunity to weigh risks and benefits of different schooling formats, they should be informed of the strengths/weaknesses of in-person versus online learning. This includes information about safety and mental health concerns as well as if students in online learning are in danger of falling behind. For students living with chronic disease like autoimmune arthritis, we need to track data to determine answers to these key questions:

  • How are these students doing on core subject areas like literacy and numeracy?
  • How much instructional time are these students getting?
  • Are these students getting the supports and accommodations they are entitled to regardless of whether they are learning online or in-person?
  • Are there sufficient resources for these students to find help for mental health issues?
In terms of ACE’s ongoing focus on health inequities, finding that significant numbers of students are being left behind under the current models of learning should raise major alarm bells. Given urgent concerns about equity, this information should be broken down by disease status, race, Indigenous status, disability and family income.