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Table 2 Themes, subthemes, and illustrative quotes

From: Rheumatic disease patient decision-making about COVID-19 vaccination: a qualitative analysis

Theme

Subtheme

Illustrative quote

Process and context of vaccine decision making

Ongoing process of weighing risks and benefits of vaccination

We dont have clear access to the vaccines other than Astra Zeneca, and aside from Duputryns in my left hand, given my history of DVT and high BP, combined with Australia's current May 2021 control of COVID19 locally, I dont like the odds of a vaccine and potential side effects vs staying away from COVID locally

Involvement of health care provider(s) in decisions

I discussed stopping my medications after the first shot with my doctor. She said it was my choice but it would help me build a somewhat stronger immunity to Covid if I did. So, I stopped taking my methotrexate and Celebrex. Today, almost 5 weeks later, I restarted those medications. In two days, it will be two weeks after my second shot. The pain from my arthritis was becoming pretty intense

Vaccine access

I'm somewhat afraid of the mRNA-based vaccines (Pfizer & Moderna), but realize that the risks of harm from Covid-19 are much greater. So I will not delay, although the Johnson&Johnson vaccine would be preferred, and the AstraZeneca next (both not available here till April at the earliest). I'll just brace for the side effects, especially after the second jab, which is said to be more problematic

Previous or current COVID-19 illness

I had COVID in January of this year. I received an antibody infusion (Bamlanivimab) and cannot receive the vaccine until 90 days have passed. I will be able to receive the vaccine after April 11, 2021

Motivations for receiving a COVID-19 vaccine

Desire for safety

How to get vaccinated! I also work with children. I really need to get vaccinated. It seems that having RA and taking medication that suppress my immune system, does not matter in order to get the vaccine

Desire to return to normal routines

I was unable to continue Orencia infusions when the pandemic started. Because I have been vaccinated, I will be able to start infusions again soon. The replacement medications, sulfasalazine, hydroxychloroquine and prednisone have not worked well enough for my RA pain

External pressures to vaccinate

The main reason for getting the vaccine was to get on with life, which it was appearing to be much more difficult if you didn't comply with getting one, not because I felt I needed it to be safe

Motivations for avoiding COVID-19 vaccination

Concerns about side effects

Very nervous about having my vaccine shots with having Lupus. the aftereffects of the second shot can be severe. waiting for the J &J shot. they are supposed to be safer

Concerns about DMARD management/flares

Still not positive I will get vaccine. I do not want to be off RA meds for 2 weeks before and after each shot

Perception of low risk

There are very effective treatments and therefore no "vaccine" needed. The survival rate is very high for most people. The VAERs system is recording many, many health issues. No thanks to this experimental biological agent

Doubts about vaccine effectiveness

As time progresses, I am receiving more and more diagnoses. I started with Dupuytren's Contracture. I now have Dupuytren's, Osteoarthritis in both hips, both wrists and lower spine. I just don't want to add side effects from a vaccine to make my life even more miserable, especially when these vaccines don't stop COVID-19, they just reduce the severity of it

Mistrust

I don't trust Biden or Fauci, will never get the vaccine unless physically coerced

Peri-vaccine DMARD management

Need for guidance on DMARD management

Concerned over how to hold medications during the vaccine cycle

Failure to withhold DMARDs

I was vaccinated and still got COVID. I think that I was on methotrexate when vaccinated may have had something to do with me getting sick

Withheld DMARDs more conservatively than recommended by current ACR guidelines

I was advised to skip my weekly Enbrel injections until 2 weeks after I finish my Covid vaccines

  1. COVID-19: Coronavirus disease 2019; DMARD: Disease-modifying anti-rheumatic drug; ACR: American College of Rheumatology; DVT: Deep Venous Thrombosis; BP: Blood pressure; mRNA: Messenger ribonucleic acid; RA: Rheumatoid Arthritis; VAERS: Vaccine Adverse Event Reporting System