Table 2 Illustrative Patient Quotations
Analytical Theme | Descriptive Themes | Participant quotes and/or author contribution | Ref |
|---|---|---|---|
Effects of medications on emotional and social well-being | Emotional aspects of treatment Impacts of medication on life Resentment towards medication Medications serving as reminders of condition Impacts of medications on sexuality Impacts of medications on potential parenthood Emotional impacts of side effects of treatment Embarrassment | “As a wife. Umm, I would say because of it, I am in the process of a divorce. Yeah, many things wouldn’t have happened. I believe so. Physical. Intimate, let’s put it that way. Because like with all the medicines, with all the flares that I got, I mean, I couldn’t be the wife maybe that he wanted me to be. So then things happened. He found somebody else. Umm, he said that that was just because I was not there for him when he needed me ... Because like, when you take so much medicine in your pores, you can smell the medicine coming out of your pores. So, in that way, I know that there was some rejection because of it.” | [23] |
“It was really hard getting to school. I was on prednisone and got pretty fat, so I was getting bullied a lot. It was hard.” | [34] | ||
“Friends have cancelled dates when they have been ill as they are aware that I need to be careful regarding infections.” | [20] | ||
“This doctor did not want me to have children in any case. She gave me a lot of medicines and she said “absolutely no children.” [...]But I did not give up. I changed my doctor again, and I found this professor S. She agrees with me, in certain things. She removed some medicines and after some months she said “OK, we can try.” So my daughter arrived.” | [29] | ||
“I can’t be in the sun… I can’t go to the beach… I would have to wear like a long-sleeved dress… it’s really depressing.” | [24] | ||
Impacts of healthcare provider relationships on treatment | Feeling of being used Feeling of being ignored Desire for continuous care Fear towards treatment Having reliable and/or trustworthy care Desire for information about treatment | “One of the many barriers is that when you feel the doctor is actually not listening to you ... Just, ‘Continue your medication.’ Then I feel pretty upset about it that, it will make me feel I don’t want to continue about doing anything.” | [31] |
“Participants valued highly the ability of doctors to give clear and accurate information about the condition itself, their treatment options and potential side effects of the treatments. Patient 8 noted, ‘... Well, he was just saying if I didn’t take my medicine I was gonna die’.” | [23] | ||
“I like the information and the explanation of health terms in normal wording. When I get my blood tests back, I don’t know what the terms mean.” | [22] | ||
“I hate it when they use me as a guinea pig, try other treatments and stuff. They just try me on different immunosuppressant drugs; I really suffer a lot with side effects.” | [34] | ||
Gaining control over treatment | Desire to manage side effects Desire for control over their life Desire for control over the condition | “The prednisone really helped the symptoms, but it made me feel sicker. Like you know the flares went away, but then I was overweight and bloated and you know my joints were swollen from the water. So I felt sicker even though I wasn’t having like you know massive flares.” | [27] |
“Just anything really, to help you to do things for yourself. I mean, I know it is about getting better and all that but there is this sort of isolation aspect and you don’t want to feel that you’ve got something that nobody knows anything about and you can’t find anything about easily.” | [30] | ||
Practical barriers to taking medication | Cost of medications Impact on travel Forgetting to take medications | “It’s one thing to have the illness. That’s bad enough, but the medical bills. .. they’re so much more than I expected and we don’t know how we’re going to pay for all of this.” “Patients with SLE in particular, also reported uncertainty in relation to needing care whilst abroad: I’d be scared that I get sick. I’m just worried about the treatment and healthcare in a different country. [SLE female, 31 years]” “Most patients reported several occasions on which they did not take their medications either because they forgot or because they chose to discontinue, often due to the large quantity of medication they were taking.” | [38] |
[21] | |||
[42] | |||
Motivation towards adherence to treatment | Medication to continue living Using treatment to improve their prognosis Taking medication out of concern for others | “My hands were black all the time and my feet...And now...look how nice and pink I am.” | [33] |
“Probably the best thing is that it probably helps with more stuff that I can’t actually physically notice, like the stuff that’s stopping my body from fully attacking itself.” | [28] | ||
“I mean I don’t feel like I’m held back in any way right now. I’m doing everything I want to do – all the clubs and activities I want to do. Psychological health – I would like to think is all there. I mean, sometimes I get stressed out with school and everything, but I feel like everybody does. Yeah, aside from the fact that I’m on medication daily, I consider myself generally – given my circumstances, a generally healthy person, I guess.” | [24] | ||
Understanding the importance of treatment | Belief that their condition isn’t severe enough Lacking understanding about treatment | “It is like so many of them. I have 15 a day that I take. It is annoying. If I think some are less important then I do not take it” | [19] |
“So my problem is that I don’t know if I am bad enough to need it (the medication), I mean you can’t know, so that’s, a struggle.” | [21] | ||
Fear and concern with side effects of treatment | Fear of side effects Non-adherence due to side effects | “But, you know, when it comes to like my energy level I don’t know if that’s the steroids or the Lupus. The memory, I don’t know if that’s really with the two of them, or one ofthem, or…you know, some ofthem I don’t really know if it’s the steroids, the Lupus, or another medication that I might be on.” | [28] |
“[Steroids] just causes more issues with my system. [Steroids] makes it go in chaos. I get more wired up. It’s bad enough I don’t sleep as it is, then I really can’t sleep.” | [28] | ||
“I haven’t really had any issues with that I know of, but I’m on so many medications I don’t know what a reaction would be with [hydroxychloroquine], so I can’t really say because of all the medications that I’m on.” | [28] | ||
“Worst thing is the day I received [belimumab] also, you can almost, by the time you leave the doctor’s office you can feel; I’ve talked to other patients there about [belimumab] too, and you can barely make it home; it makes you so tired. I mean you have to drive home after because you have to receive [belimumab] at the doctor’s office…” | [28] |