Exploring the Experiences of People with Disabilities during the First Year of COVID-19 Restrictions in the Province of Quebec, Canada
Abstract
:1. Introduction
2. Materials and Methods
2.1. Design and Participants
2.2. Data Collection
2.3. Data Analysis
3. Results
3.1. Mental Wellbeing and Physical Health
I had exams that were supposed to take place that were cancelled, that created a lot of stress and… Oh yes I’m anxious too, I have anxiety. A little complement. So, it really created a state of insecurity and increased stress, and therefore pain and fatigue, which was also linked to that. (A man of 71 years old having a mobility disability)
I feel less alone. I feel more like we are all in the same boat. (A woman of 29 years old having a pain disability)
The reality of someone living with a disability is that they are confined for their entire life. (A man of 55 years old having mobility, flexibility, dexterity, pain, and memory and/or cognitive disabilities)
Before the pandemic, if before the pandemic I hadn’t had the medication and all the background [experience] that I had, I would have gotten through it, but much harder. (A woman of 49 years old having a mental health disability)
I think that our community suffers less because of the isolation because there are other things that I told you about that we suffer, but personally, I don’t live it because it’s my everyday reality, so it hasn’t changed anything. (A man of 55 years old having mobility, flexibility, dexterity, pain, and memory and/or cognitive disabilities)
There’s my physiotherapy too that I was cut off for two months last year. When I stopped my physiotherapy last year, for two months before it started again, I had lost a lot of functions, at the functional level, I was limping, I had a cane. Two months, no physiotherapy, it was huge. I found that hard too. (A woman of 52 years old having pain and mental health disabilities)
If I wanted to go to the market, like go to the grocery store, when I got to the market and there was a line of people waiting, I had to go home, because my leg goes numb when I’m standing still. So, sometimes I would go to the grocery store four times before I was able to get back to the store without a line. (A woman of 77 years old having mobility, flexibility, and pain disabilities)
3.2. Leisure and Professional Activities
That’s one of the reasons why I don’t go out a lot, well I don’t go out a lot, I don’t go to the grocery store or anything, it’s so I don’t have to put on a mask, I just go out when I have to go out, [i.e.,] when I have my medical appointments and my treatments and my psychologist. Other than that, I don’t go out. I go out once a week and that’s it. (A woman of 52 years old having pain and mental health disabilities)
At the same time, it just had a big impact on my activities because already there was a big impact on my stroke and in fact, I didn’t have that mobility anymore, they took away my license. So, on top of that, even, even the things that I could do without a license, well I can’t do them anymore. So, it was like, when it was like adding a layer to what was already there […]. They always say it couldn’t be worse, but here I think it could have been worse, but I don’t dare say it couldn’t be worse because I’m afraid. (A man of 52 years old mobility and mental health disabilities)
I used to volunteer, I can’t do it anymore because of my health difficulties, they preferred not to take me during the pandemic so as not to put me at risk […], they didn’t want to expose me to COVID. (A woman of 52 years old having pain and mental health disabilities)
Well, at the beginning, in March, I was not on leave, they put us on leave, then after that, they rehired us 25 hours a week, after that it was 35 hours, they rehired us full time. (A woman of 63 years old having mobility, flexibility, and pain disabilities)
3.3. Social Relationships
I didn’t see anyone. Luckily, I had Zoom with friends on Friday nights, but other than that, I didn’t see anyone. I live alone and I have a friend that comes over on the weekends, but I mean, it’s very hard to… I find that I’ve lost vocabulary and not talking and not talking, I was at a point where, I’ve been to the hospital 18 times for my leg, I was at a point where I couldn’t wait to go to the hospital to meet someone and talk. It’s not fun when you’re at the point where you’re happy to go to the hospital. (A woman of 77 years old having mobility, flexibility, and pain disabilities)
It’s hard to live with [social distancing] I am a person who, first, needs others and others need me. So, at the beginning it was fun, we met on Zoom, on Teams, on Messenger, some kind of virtual happy hour, it’s always fun at the beginning and it’s funny, we put little pictures and sometimes we dress up and it’s really funny, but at some point, people get off that. (A woman of 53 years old having a mobility disability)
3.4. Services
Well, it’s in terms of everything that happens with our home help, that’s hell. There are no more services. I need help to do my housework, that’s for sure, but I need help for other things than that. Like taking a shower, etc. It’s hours that are allocated to me because I’m entitled to that. But there is no one who offers services anymore, because everyone, there is no one who wants to go out of their house to give services to someone who is “sick”. (A man of 55 years old having mobility, flexibility, dexterity, pain and memory and/or cognitive disabilities)
[…] It’s just that there are fewer staff on the floor, sometimes instead of four there will just be two. So, they’re going to move my hours of service: “Oh, tomorrow you have to get up earlier”. I’m kind of forced to, I can’t really say no. But it’s certain that because the staff… Since there’s no more rotation, well then, they’re going to make cuts, and when we see that they’re in a hurry, we’re going to ask for less, we’re going to do without, or they’re going to say to us: “Can you come back later”, or they forget about us. It’s normal, because instead of being four, they are two. It’s all small changes daily. It comes a burden in the end. (A woman of 45 years old having a mobility disability)
Many businesses and services have stopped offering accommodations for people like me. (A woman of 40 years old having a vision, mobility, dexterity pain and memory and/or cognitive disabilities)
Well, I certainly had a direct telephone number with my psychiatrist at the hospital, so I didn’t see any change: she returned my calls, no problem. Even my family doctor, like the prescription, she was quite accessible within 48 h–24 h I had access to her to chat a little bit and things like that. (A woman of 49 years old having a mental health disability)
3.5. Perceived Treatment of PWD during the Pandemic
They don’t care about us. I don’t think there’s any help for us, I mean, I don’t even know where to call if I need help. … I find it terrible; I find that a lacks consideration … We are forgotten and that is sad. (A woman of 66 years old having mobility, flexibility, dexterity, and pain disabilities)
Sick people in general, we all took a back seat because we weren’t too important, we weren’t the ones who made the economy go round, on the contrary, we were expensive. And then there was a kind of ambient discourse in the population “but they’re going to die anyway” or… there was a lot of this discourse where old people “well, they’re old anyway”, sick people “well they’re going to die anyway”. (A woman of 29 years old having a pain disability)
Of course, we are not the most valued clientele. But it can be understood. It can be understood, and I understand in the context, especially in the context of the first wave, well, so it was new, so I can understand. (A man of 23 years old having a mobility disability)
3.6. Perception of Health Measures and of the Risk Posed by the COVID-19 Virus
It was already in my daily life, I already wore a mask to go to the hospital or to family parties where there were more than ten people or if there were children, things like that to protect me. So, that was already something I knew well. (A woman of 40 years old having a vision, mobility, dexterity pain and memory and/or cognitive disabilities)
In a disabled person or in a person who has more fragile health, basically, who has nothing to do with COVID-19, it’s insecure, because people, well, we won’t go to the hospital because, we think that we could perhaps have more one […] We are always cautious, and we are always on our guard. (A man of 48 years old having mobility, dexterity and pain disabilities)
My family, the people are all quite old […] They are all at risk, and as I go to physiotherapy, they are all a bit afraid of me. It’s normal too, it has consequences, so they put me in quarantine because I often go to the hospital, but they are right. It’s a pity because I went back to my family after four years to reconnect with everyone. (A woman of 49 years old having mobility, flexibility, dexterity, and pain disabilities)
3.7. Perception of the Future
It’s going to be the sun, the sun after the storm. It’s going to be great; we’re all going to be happy to see each other again. (A man of 71 years old having a hearing disability)
So, I’m afraid that my health won’t get any better when it’s over, that my problems won’t be solved and that everybody’s life will go back to normal… that everybody’s life will go back to normal and I’ll still be behind, dealing with my autoimmune disease, my chronic migraines, all my other problems. (A woman of 29 years old having a pain disability)
My disability is progressing […] And, as I am at home, all day […] Feeling how my body is so unpleasant. How it becomes more and more painful. Me, it is certain and certain that I have already started medical aid in dying procedures, so, is this the confinement? No, it’s not the period, but it surely adds to the isolation and the thoughts that come with being all alone and not feeling well like that, I’m more tempted to fight with a body which hurts me there. (A man of 55 years old having mobility, flexibility, dexterity, pain and memory and/or cognitive disabilities)
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Characteristics | n (%) |
---|---|
Age, years (mean [SD]) | 55.4 [15.5] |
Sex | |
Women | 20 (50.0) |
Men | 19 (47.5) |
Gender-fluid, non-binary and/or two-spirit | 1 (2.5) |
Disability categories 1 | |
Seeing | 11 (11.5) |
Hearing | 6 (6.3) |
Mobility | 19 (19.8) |
Flexibility | 14 (14.6) |
Dexterity | 8 (8.3) |
Pain | 17 (17.7) |
Learning | 1 (1.0) |
Developmental | 1 (1.0) |
Intellectual | 1 (1.0) |
Mental health | 8 (8.3) |
Memory and/or cognitive | 7 (7.3) |
Language | 2 (2.1) |
Other | 1 (1.0) |
Dwelling | |
Community dwelling (e.g., home and apartment) | 36 (90.0) |
Long-term care home | 2 (5.0) |
Residence for autonomous seniors | 1 (2.5) |
Others | 1 (2.5) |
Highest diploma, trade certificate or degree completed | |
Less than a high school diploma or its equivalent | 1 (2.5) |
High school | 7 (17.5) |
College | 14 (35.0) |
Undergraduate university degree | 14 (35.0) |
Graduate university degree | 4 (10.0) |
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Fortin-Bédard, N.; Lamontagne, M.-E.; Ladry, N.-J.; Bouchard, D.; Lettre, J.; Desmarais, C.; Boucher, N.; Best, K.L.; Raymond, E.; Fougeyrollas, P.; et al. Exploring the Experiences of People with Disabilities during the First Year of COVID-19 Restrictions in the Province of Quebec, Canada. Disabilities 2023, 3, 12-27. https://doi.org/10.3390/disabilities3010002
Fortin-Bédard N, Lamontagne M-E, Ladry N-J, Bouchard D, Lettre J, Desmarais C, Boucher N, Best KL, Raymond E, Fougeyrollas P, et al. Exploring the Experiences of People with Disabilities during the First Year of COVID-19 Restrictions in the Province of Quebec, Canada. Disabilities. 2023; 3(1):12-27. https://doi.org/10.3390/disabilities3010002
Chicago/Turabian StyleFortin-Bédard, Noémie, Marie-Eve Lamontagne, Naomie-Jade Ladry, David Bouchard, Josiane Lettre, Chantal Desmarais, Normand Boucher, Krista L. Best, Emilie Raymond, Patrick Fougeyrollas, and et al. 2023. "Exploring the Experiences of People with Disabilities during the First Year of COVID-19 Restrictions in the Province of Quebec, Canada" Disabilities 3, no. 1: 12-27. https://doi.org/10.3390/disabilities3010002
APA StyleFortin-Bédard, N., Lamontagne, M. -E., Ladry, N. -J., Bouchard, D., Lettre, J., Desmarais, C., Boucher, N., Best, K. L., Raymond, E., Fougeyrollas, P., LeBlanc, A., & Routhier, F. (2023). Exploring the Experiences of People with Disabilities during the First Year of COVID-19 Restrictions in the Province of Quebec, Canada. Disabilities, 3(1), 12-27. https://doi.org/10.3390/disabilities3010002