Table 2.
Examples of quotes describing key physician behaviours that influence patient trust, well-being and security
| Examples of positive experiences | Examples of negative experiences | |
|---|---|---|
| The diagnostic appointment | Everyone was so compassionate.… I was sent away with a lot of information … she [rheumatologist] made it as bearable as it’s ever going to be.… How it is handled at that moment, on that day, is so important … I knew then I was in safe hands. (Participant 2, female, 50s) | She [rheumatologist] said you’ve got lupus and arthritis and that was it. So I went away and googled. I found out all about the bad stories.… I was like, this is it, I’m going to die.… I’ve never had it explained, even though it’s been 4 years. I couldn’t tell [school] anything because I didn’t know what lupus is.… I just think they [rheumatologists] don’t care much. (Participant 7, female, teens) |
| Availability in times of crises | He [rheumatologist] said, ‘If you need me, you just email’.… It’s priceless … because you never know when a flare is going to strike. You could be doing cartwheels today. Tomorrow, you can’t even move … so to have that lifeline: ‘Doc, I’m in trouble’. ‘Right, get yourself to clinic’, you know, and it’s straight away. (Participant 3, female, 50s) | [Secretary] said, ‘I refuse to take your phone calls anymore. If you’ve got anything to say, you will phone the rheumatology hotline’.… [Hotline nurse] said, ‘We can’t keep replying to your phone calls. You’re not the only patient we speak to in a week, and I’d urge you not to phone again’.… And I was, like, ‘Why are you being so obstructive? I’m really sick’, and 10 days later I was admitted. (Participant 17, female, 30s) |
| Belief and validation in patients’ symptom reporting |
|
[Rheumatologist] said, ‘You walked in here unaided. Your hands aren’t deformed. Appointments are allocated according to need’. Every symptom I have that isn’t specifically to do with my joints he dismisses as being nothing to do with my autoimmune condition. Why won’t he listen to what I am saying and why is he ignoring my neurological symptoms? … It’s because they don’t look at the patient sitting in front of them … they’re looking at their computer screen … he rarely looks at me. (Participant 16, female, 60s) |
| Care: holistic care, continuity, communicationand consideration for quality of life | My rheumatologist has each patient fill out a questionnaire on symptoms.… She wants to know how you really are doing … discusses this and other concerns.… She has the perfect combination of analysing clinical test results, factoring in symptoms and asking pertinent questions.… She asks at every appointment about the fatigue, brain fog and quality of life … gives practical advice. (Participant 14, female, 60s) |
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