key: cord-0724746-j60b5hzn
authors: Leese, Jenny; Backman, Catherine L.; Ma, Jasmin K.; Koehn, Cheryl; Hoens, Alison M.; English, Kelly; Davidson, Eileen; McQuitty, Shanon; Gavin, James; Adams, Jo; Therrien, Stephanie; Li, Linda C.
title: Experiences of self‐care during the COVID‐19 pandemic among individuals with rheumatoid arthritis: A qualitative study
date: 2021-08-17
journal: Health Expect
DOI: 10.1111/hex.13341
sha: 784a04cdcbd74ea93b15e37dc14c69cfb2699f04
doc_id: 724746
cord_uid: j60b5hzn

OBJECTIVES: This study aimed to explore the impact of the coronavirus disease 2019 (COVID‐19) pandemic on self‐care of individuals living with rheumatoid arthritis (RA). METHODS: Guided by a constructivist, qualitative design, we conducted one‐to‐one in‐depth telephone interviews between March and October 2020 with participants with RA purposively sampled for maximum variation in age, sex and education, who were participating in one of two ongoing randomized‐controlled trials. An inductive, reflexive thematic analysis approach was used. RESULTS: Twenty‐six participants (aged 27–73 years; 23 females) in British Columbia, Canada were interviewed. We identified three themes: (1) Adapting to maintain self‐care describes how participants took measures to continue self‐care activities while preventing virus transmissions. While spending more time at home, some participants reported improved self‐care. (2) Managing emotions describes resilience‐building strategies such as keeping perspective, positive reframing and avoiding negative thoughts. Participants described both letting go and maintaining a sense of control to accommodate difficulties and emotional responses. (3) Changing communication with health professionals outlined positive experiences of remote consultations with health professionals, particularly if good relationships had been established prepandemic. CONCLUSION: The insights gained may inform clinicians and researchers on ways to support the self‐care strategies of individuals with RA and other chronic illnesses during and after the COVID‐19 pandemic. The findings reveal opportunities to further examine remote consultations to optimize patient engagement and care. PATIENT OR PUBLIC CONTRIBUTION: This project is jointly designed and conducted with patient partners in British Columbia, Canada. Patient partners across the United Kingdom also played in a key role in providing interpretations of themes during data analysis.

For instance, fear from the increased likelihood of testing positive for COVID-19 as a person using immunosuppressive treatment may lead to avoiding grocery shopping, walking outdoors or pharmacy visits to reduce exposure in public spaces. 5 With rheumatology practices and rehabilitation services transitioning to telehealth consultations or cancelling appointments, there may also be changes to accessing health professionals. 6, 7 Some individuals with RA may experience administrative burden in arranging consultations or avoid seeking medical attention for new or worsening health problems. Gyms and swimming pools were closed in many communities during the pandemic, reducing access to exercise facilities. Furthermore, some worried about access to essential medications, such as hydroxychloroquine. 6 Taken together, these challenges may have significant impact on individuals' self-care practices and their physical and mental health in many countries impacted by the pandemic.

Underpinned by a constructivist paradigm and applying reflexive thematic analysis, this qualitative study explored in depth the impact of the pandemic on self-care from the perspectives of people living with RA. Specifically, we focused on individuals' experiences in managing stress, staying active, eating well and accessing necessary medications during the global health crisis.

This study was situated within two randomized-controlled trials (RCTs) on self-care interventions involving the use of a wearable activity tracker, a web-based app and activity counselling with a physiotherapist in Canada. 8, 9 At the end of the RCT interventions, participants were invited to share their experiences in an interview related to the effects of the interventions on their self-care.

To be eligible for the RCTs, participants needed to have: (1) a physician-confirmed diagnosis of RA, (2) not undergone joint surgery in the past 6 months, (3) no history of acute injury to any joints in the past 6 months, (4) an email address and daily access to a computer or mobile device and (5) no contraindications to be physically active as identified by the Physical Activity Readiness Questionnaire. 10 Recruitment occurred at rheumatology clinics in the province of British Columbia (BC), Canada, and through patient groups, Facebook and Twitter. RCT participants were purposively sampled for the present study to achieve maximum variation in demographic characteristics (age, sex, education). Participants also needed to have reached the end of the RCT intervention to be interviewed between March and October 2020, coinciding with Phases 1-3 of the province's pandemic response plan (File S1). 11 All interviews were conducted by phone by a PhD researcher with qualitative research experience (J. L.) and focused on two topics: (1) participants' experiences with the intervention (an original study goal) and (2) impact of the COVID-19 pandemic on self-care (a goal added as a result of the pandemic occurring while the RCTs were underway; File S2: Interview guide). The researchers (L. L., C. B., J. L.) initially created the semi-structured interview guide and, in consultation with five patient partners (C. K., A. M. H., K. E., E. D., S. M.), modified it before interviews began and periodically throughout the study to add content relevant to exploring the impact of COVID-19 on participants. 11 The RCTs and addition of COVID- 19- 

Audio recordings of interviews were transcribed verbatim and transcripts were deidentified. Data analysis was informed by a collaborative and reflexive thematic analysis approach within a constructivist paradigm, which aligns well with our research question as it is suitable for developing an understanding of multiple realities that are socially and experientially based. [12] [13] [14] [15] Two researchers (J. L., J. M.) independently read and reread a sample of three interview transcripts, making notes on points of interest shaped by the research question as well as broader questions around what was going on in the data, before meeting to share and reflect on each other's perspectives. They next independently generated semantic codes inductively from this sample and continued to make notes of points of interest and to question and query assumptions made in interpreting and coding the data. They then met regularly to collaboratively rework, discard or create new codes. The researchers next sorted codes to construct the most meaningful candidate themes through discussion. These candidate themes were applied to subsequent transcripts, with researchers modifying, rejecting or creating new themes or subthemes as directed Language Guide was consulted to ensure that inclusive language was used to label and define the themes identified. 16 Representative quotes for each theme were identified to illustrate the experiences of the participants. Our sampling and analysis ceased upon agreement among the research team that sufficient depth of understanding was reached to address the research question. This kind of interpretive judgement is better aligned to our qualitative approach than the notion of saturation. [17] [18] [19] To examine and strengthen the transferability of the findings, researchers in Canada partnered with researchers in the United Kingdom and shared the candidate themes with 13 UK-based patient partners to better understand how people with RA managed in different global contexts during COVID-19 and whether successful strategies may be transferrable and could be shared more widely. The candidate themes served as a stimulus for discussion, facilitated by a health sciences researcher (J. G.) in the United Kingdom, as the patient partners reflected on whether themes resonated with their own experiences of managing their self-care activities while living with RA in the United Kingdom during COVID-19. Detailed notes were taken by the researcher during discussions to document similarities, differences and additional experiences.

We use the term 'patient partner' to describe patients, their caregivers or the public who engage in research activities in partnership with researchers. Engagement is broadly understood to occur when patient partners are actively involved in governance, priority setting, conducting research or knowledge translation activities. 19 Anything I could do without actually going out'.

Being laid off or working from home led some participants to have more energy or be more physically active than they were prepandemic ( 

Many participants experienced stress, anxiety or fear, commonly prompted when leaving the home ( Table 3 , Quote 1) through concern for family members who were often vulnerable or high risk (Table 3, Quote 2), by changes in employment status and finances ( , 'This is a really good way for people to understand… As well as dealing with illness there is daily grief on missing out on the simplest things people take for granted; a café, a walk and bus ride and views' and she went on… it's just it beautifully articulates how hard life with chronic illness is. And that it is a grieving process. And it's hard. And usually, the responses we get aren't filled with empathy and understanding like that.

to new protective measures ( would not be able to work after the pandemic was announced, Betty also stated 'I was able to prepare… we did all these things to cut our expenses before our incomes were cut… I feel like today I can breathe easy. I'm actually significantly less stressed than probably before all of this'.

Participants commonly highlighted that the government's response eased their anxieties ( Chris reflected 'our adult children, they were all off their heads. They were all, oh my gosh you can't go out, we'll buy you this and you stay isolated, and don't you do this and don't you do that. So, we were chuckling at them, but at the same time we were being con-scientious… we just kind of went with the flow'.

Participants also kept perspective by keeping a positive attitude in difficult experiences ( with strict advisory home confinement (e.g., in the United Kingdom), but the same has not been found in areas without a total or a partial lockdown. 28, 29 The latter is characterized by closures of schools, restaurants and bars, and cancellation of public meetings without strict home confinement, such as the case in BC. Our findings highlight how participants proactively adapted their physical activity to incorporate physical distancing measures, in some cases becoming more active than they had been before the pandemic. These findings may reflect a reality that some individuals with RA already have a desire and capability to continuously manage their health. They also align with sociological research that shifts away from a traditional focus in the medical literature on the need to teach self-care towards understanding ways to support self-care. [30] [31] [32] The experiences described by our participants provide early empirical evidence that may inform clinicians and researchers to consider and study strategies that support individuals with chronic illnesses to adapt and maintain a healthy lifestyle during and after the pandemic. 33 Unsurprisingly, emerging literature supports our findings that individuals with RA experienced heightened feelings of fear, anxiety or stress during the pandemic compared to before. 6 thing that I do now that's still has lingered a little is I don't always-if I go out in the car, let's say to go grocery shopping or whatever or we need to just run in a place to get something, I will often not go in… So that has lingered for sure… It was extremely difficult at the beginning. It's less difficult now, but it's certainly always a consideration, it doesn't really leave my head… Penelope (Phase 3): About six weeks ago, I started grocery shopping. As I said, in the first while, people were bringing in stuff. I was inside. My friends would basically-for shopping, my friends would bring groceries. I would send the list, they would bring the groceries. I would e-transfer the money to them and then would begin the total thing of, you know, disinfecting and wiping things.

Carol (Phase 2): I live right by the sea wall. So I've been avoiding that the last few months because it's just too busy and it gives me too much anxiety with all the people on there. So I mean the good thing about this whole pandemic is that it's kind of forced me into the trails and figuring out other less busy routes to take around the city. So I try to make it a goal to run at least three to four times a week. Some of them was a bit of trial and error. So where's this one going to end up? But I think like over the last couple of months, I've just really gotten to know them very well. It's kind of like I'm running and enjoying running again. It's just being in the trails, being in nature. I think I'll continue with those runs. I went the other day, it was raining outside, so the sea wall was dead. I had every opportunity to use the sea wall and not feel so stressed. But I don't know, I just felt really drawn to be back in the trails again.

Penelope (Phase 3): About six weeks ago, I started grocery shopping. As I said, in the first while, people were bringing in stuff. But then I started going out when they started doing the opening for the first hour where everything's sanitized and clean for the high risk and vulnerables. And we started going out early, getting up early, which can sometimes be a feat getting there at the store and having our lists ready and actually. I've also had to shop not only for myself. I have an eighty-three-year old mum, so that's hard on her, so I've had to shop for her as well. And it's quite challenging, because not everybody in the store are practicing social distancing, even the store that I have chosen to go to, they had all the shields up and they were very good about the whole protocol. But actual people sometimes are not as cognisant of that… it's exhausting and it takes a lot of time, because we follow the protocol; once we go out of the house, we have to, when we come back, the shoes-there's rain and sleet outside-then we strip down, put everything into the washing machine and we take showers and, you know, go back and then of course have to-everything that's brought in has to be done. And to me, that sometimes takes my whole day and I'm exhausted. takeout. Right now we have the time to prep good, wholesome meals… We eat plant-based anyways, but we're eating a lot more whole food plant-based, which is always the goal, but sometimes we're working fulltime and have all of our sports and volunteering etc. it can be difficult to not just sometimes wait for the faster options.

Vanessa (Phase 3): I've been in nature, I've been biking, I've been canoeing, and I've been dedicated to the yoga and the cardio, I think it's better. By not having an excuse of, 'Oh, I'm a little bit tired; maybe I'll do the workout tomorrow, from work'. So I think it's better.

Heather (Phase 1): Then with COVID. And my husband's only just last week gone back to work part-time but he's working from home. And of course my daughter is at home [laughs] from school and so part of our everyday has been to get out of the house because he's very high school for complications if any of us were to become ill so we don't go anywhere. We haven't been or I haven't been in another building for however many weeks now [laughs] . So our only real change has been to go for a walk so we've been going for walk for at least 45 minutes every day and sometimes up to an hour and half. So that's … so that's actually I think improved my activity which is kind of strange.

Chris (Phase 2): Probably my eating habits probably improved slightly because of more home cooked meals and fewer-fewer fast food and fewer eating out meals. But again, not hugely. 33_Marilyn (Phase 3): I bought an instant pot, because I wanted to make my cooking more efficient. And so, yeah, I started making a lot more meals. Like, I would cook, but not a whole lot. But with COVID, yeah, I was making my meals every day. So I felt like I was eating healthier. And because I'm, like, okay, I should really try being in the best shape that I can, eating healthy and not eating junk food. And so yeah, I think it turned into a healthy habit… because I thought, oh my gosh, if I do get sick, then I want my body to be in the best-in the healthiest way it can be if something did go down and I did get sick. I wanted a strong immune system and, like, I could have one, yeah.

Supplemental data for Theme 2: Managing emotions Linda (Phase 2): Just less stress in my personal life… Just being able to work from home. The two hour no commute, being at home, being able to do some of my chores at lunchtime, in the morning before I go to work as opposed to, like I said before, then my whole day's gone if I don't get home until 4 o'clock to fit in the workout, to fit in dinner, to fit in laundry, to fit everything in.

Daff (Phase 3): When there was the toilet paper shortage, that wasgoing for everybody. And you know, my daughter was testing me at one point, she was, I've only got three rolls of toilet paper left. So then we went-I remember going to grocery stores and stores, looking for toilet paper for her, because that's the time she was selfisolating, because she thought she had COVID-she didn't. But at the time they weren't testing everybody, so she was told to just stay home and isolate. So I was buying toilet paper for them, or even groceries or medication I had to go and drop off at their door. So yeah, it was-that time was very anxious for all of us, not to the point where it affected me physically or anything, but I was definitely more anxious than I had been in a long time.

Mary (Phase 3): For a while it was very stressful to do things like go to the grocery store or go into London Drugs. I still avoid it, I still try and go less than once a week, but I go to smaller stores, because I (Continues) LEESE ET AL.

find sometimes there won't be anybody else there… At first it was very stressful… I definitely am aware of what I'm doing it those places, so I don't feel unsafe.

In it all, emotionally, obviously there have beenyou go through the stages of difficult emotions and I'll say there have been times-I would say that there's only two times I've had anxiety… I basically know what to do to get things under control and to manage that. Even then, I would say that I have some days, especially when it was weather-related-wise, where it was low mood. And that was, you know, like, you still have those days… you find ways of doing things that would lift your spirits indoors. And I think part for me, because I'm so social, is being connected to people and being able to speak, like, even with a friend or with a family member, and hear how they're doing… I love listening to music, so I put on good music and that lifts my spirit, that's for me personally. I also likeso music is one of the medias that I use. I've used-as I've said before, I also have been praying a lot. For me, that also has lifted my spirits… it was emotional… dealing with my eighty-three-year-old mother… like, she volunteered a lot, like, almost every day-and her having to be cooped up, that was not very good for her… I think the stress of having to be able to emotionally care, because she's very demanding and aggressive, and you know, the worst comes out in people's emotions when you're at that age and you change their routines and you take things away from them, and they can't be doing what they are normally accustomed to, right.

Daff (Phase 3): I did definitely have anxiety, especially-it wasn't so much for myself, but for our children, because I was worried about their jobs… So there's a little bit of anxiety still on that part. I mean, we can help the kids at any time, but we can't help for long-term, because that's our retirement money… we definitely saved money. I mean, we're still saving more money, just because we aren't doing as much as we normally would. So, I was definitely worried for them at first… in mid-March when everything started to happen I kind of did the pre-worrying where I was like 'Oh my gosh, we're not going to be able to work, we're going to have all of this financial whatever' and I was worrying about my parents… Like I know pre-worrying is not a good thing to do, but having that kick in before everything hit, I was able to prepare. So, like we took the car insurance off our second vehicle and we did all these things to cut our expenses before our incomes were cut, which really made it so that-I feel like today I can breathe easy, I'm actually significantly less stressed than probably before all of this. But I did go through probably one or two weeks of like fairly intense stress before my husband not being able to work and my hours being reduced… I've been able to take it in stride, because we came up with a plan to sort of be able to handle it. openness and transparency in terms of numbers, that kind of stuff, is really reassuring to people. And the fact that they let people who are in charge of health lead the discussion, I think was more powerful. And they took Question Period and sometimes I had to like not listen to Question Period, because the questions people ask areyou know, sometimes news is so sensational or like trying to be more dramatic. But, yeah, I just thought they did a great job and provincially and federally there was a lot of strength in leadership.

Mary (Phase 2): But we're [the family] all healthy and safe and yeah, that's really all you can ask, the way things are right now. I mean it's not great, but it could be a lot worse… for about a month, we really -a month or so was really stressful… overall we've had bad days, but overall it hasn't been that bad for me overall… Just the fact that they're getting more information. Mark (Phase 3): I've seen my family physician via the phone a number of times for prescription renewals and such, but not my rheumatologist… I quite enjoyed it. I wish they would get to do that more… it's easier to get a hold of them on the phone than it is to make an appointment most times… at least my family doctor is booked up weeks sometimes in advance… I think you could probably do three or four, triple the amount of appointments on the phone than you can in person I'm betting… a lot of times it's just a matter of a conversation. You talk about a prescription renewal or a dosage or, you know this is how I'm feeling… my doctor's a good guy… So either way, phone or in person, I always like to see him but the phone is fine. There's no problems with that… He's an upfront good, communicative, friendly doctor.

Penelope (Phase 3): I did have a virtual Medeo appointment with my rheumatologist, and that was great… I was quite excited that it's there… And now people are happy to do virtual calls with their healthcare professionals, and I'm excited about that… it would have to be pre-COVID that I did it with my rheumatologist, but then we have done one since COVID. And then I've also done one with my doctor that's a call, so that's still virtual… even outside of COVID, there are some days that just even getting transportation or getting on transit, or getting on transportation to and from your healthcare professional's office, is a challenge… it's kind of cool that you have that, where they can't see you, and they can do this and they can be helpful… it's important that you have good relationships with these people and your doctor, and communicate well with them. Because that made all the difference during this time… I do have amazing healthcare professionals… they do exemplify what they do in their roles, right. They're caring and they're for their patients… So (Continues) anyways, that was my COVID healthcare professional experience… My rheumatologist also has a rheumatology nurse on staff. And so what happened was that the rheumatology nurse actually was working from homeso she has an office at home-and she called me and asked, you know, all the questions… It was just that I didn't travel to get there, but I felt the quality of care was the same… I feel comfortable to be able to communicate and ask the questions that I need answers for myself… So they actually actively listen to what I have to say, and I think that makes a difference… we've built that trust over time with that… just taking those few minutes to be human and to show your caring, show your compassion-I'm saying that that's what I've had from mine.

Mary (Phase 2): I've had a couple of appointments with [my family doctor] … They were fine, one was just to get a prescription… One of them was on the phone and then the last one I did, she actually has virtual appointments set up now, so they have like a secure video chat that we use… I've been with my doctor now for, oh God, 13 years. So I'm really comfortable with her, so it was fine… I think it would be more awkward with my rheumatologist honestly. I have only seen him a few times, three I think, three or four. But with my doctor, I know her so well that it was yeah, it was fine… he's [my rheumatologist] a very brisk person. And so I just think that it would be a little bit uncomfortable to talk to him over video chat, I don't know.

Danielle (Phase 3): Interviewer: some people have talked to me about having remote consultations with their health professionals, I wonder if that's happening with you at all? I have done it once and that was a little bit weird… You know, I had seen pictures of him online and whatever, so when you meet someone in person you sort of get your-form your impression and whatever. I felt Zoom somewhat made that artificial and it wasn't-I didn't really get a true sense of him as a person… there's a little bit of an artificial wall there even though we're looking at each other… I would definitely like to see him in person. But as a first step, yeah it was fine. So now I know, you know, I had that, and it would be easier when I am able to do that in person… Ruth (Phase 3): …My specialist… I think he's a pretty good specialist. I mean he's bent over backwards to try and, you know help me with trying to find a medication that's going to work. And so far, we had some complications… and he hasn't been able to come up with anything… During the pandemic, we just had to do the video calling, right… because I was having flare-ups, he just had (Continues) ordered extra stuff for me and whatever. But you know it's really-it's difficult… it's hard when you're videoing-videoing over the phone… because you're not seeing each other and you can't really look… he can't look at me and touch my joints and stuff like that to actually… he's only going by what I'm telling him. So, it does make it hard to get a correct diagnosis, right. And that's what he said. So, the last time, you know he said to me, 'Well we, you know when you tell me-I was telling him all this stuff on the phone'. The last time he goes, 'No, no… I have to get you to come in now because I need to see you, so that I can examine you'. It went way better when we examined me. He said he could at least see… how bad I was… I just wore my mask and, you know sanitized and everything. And he had his mask on. And we sanitized even in the office and everything. I had no issues there at all. You know, I mean the protocol was very well -you know there was social distancing between us, etc. You know and he had gloves on when he examined my fingers and looked at my feet and all that stuff… I mean I felt perfectly safesafe with him, right. I felt safer in his office than you do when you go into a hospital… you know the hospitals, I think are justsocial distancing is-is a little bit not as good… they try to but it's kind of hard because you know you've got so many people, right… it just seems like they always have extra people coming in.

Dr. Pooh (Phase 3): When I go to get my vaccines, I come in, they have someone at the door when you come in. [My family doctor] She's dressed in PPE with mask and a visor. And-to take my temperature and they ask me questions and then they take me right into the room… I find it reassuring. Because a doctor's office is-people come to a doctor's office either because they're sick or they don't want to be sick. So, I would much rather be protected from a virus that you can't see, than to have somebody with-does not have a mask on.

Carol (Phase 2): I get the Actemra done by infusion, and I really gotten to know the nurses really well there. So that's all changed now because now they're completely downed out. There's a whole process of going in and going out. So it's very different, it's not as personal as it used to be. You can't see their faces. You can't smile.

They're a lot busier now, like having to like put on the PPE, take off the PPE. So it's a lot different… I really feel for them. I can't imagine having to wear that all day… they're just all a really great bunch, but yeah, it's just, it feels different… I understand why we have to wear them, so I'm OK with it.

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The authors specially thank all of the participants and UK patient partners, including representatives from Versus Arthritis, who shared their time, experiences and insights for the purposes of this qualitative study. This study was supported by the Arthritis Society (Funding