Table 1 Themes and subthemes for Theme 1 Experiences of individuals and whānau (family) are respected and valued
Sub-theme | Illustrative quote | |
|---|---|---|
A1 Experience as people | ||
A1.1 | Value individuals and their experiences | |
A1.1a | System | So that the person in the middle, the patient, is actually in the middle… We’re whole people. I’m not just my arthritis |
A1.1b | Interpersonal | The main thing that I value personally is being respected as a person not just being a number and having someone that kind of understands what I’m going through |
A1.2 | Relationship with professionals is supportive | Everybody that I’ve come in contact with has been really supportive |
A1.3 | Importance of relationships with professionals in the rheumatology service | |
A1.3a | Rheumatologists | Well, I’m hoping [my rheumatologist is] not going anywhere. I’ve finally found my rapport, he checked all my boxes when I had my many questions when I saw him for the first time |
A1.3b | Nurses | And his nurse has been awesome |
A1.3c | Support/admin staff organising appointments | Establishing a relationship with both the specialty nurse and whoever’s in the rheumatology department and your rheumatologist is pivotal |
A2 Experiencing care that supports the patient | ||
A2.1 | Supporting self-management | And learning how to manage all of that yourself is really empowering |
A2.2 | Supporting active participation in decision-making and care | There’s an obligation on the patient to actually try really hard and try and learn their condition so that they can be a part of that conversation and not be a passive adverse observer and be someone who things happen to |
A2.3 | Education requirements met | |
A2.3a | Right language for effective communication | How to be an effective patient and how to communicate effectively, and the importance of knowing the language of your condition so you’re not flapping around in the dark |
A2.3b | About condition and management | A lot more education about what was wrong but also about what services are available and how to access them as well |
A2.3c | To make informed decisions | It will be very helpful to have information prior to seeing the rheumatologist so you’re able to make an informed decision |