Highest/lowest rated concepts | Rating* | Statements (examples) | |
AxSpA | Lack of understanding/to be heard and seen by healthcare professionals | 4.0 | ❖I did not feel heard or seen until I was diagnosed ❖I had the feeling that others thought it was something I was imagining |
Surroundings’/relatives’ understanding and ‘good’ advice | 3.2 | ❖You just have to… ❖I cannot stand other people’s worries | |
PsA | Medication (effects and side effects) | 3.8 | ❖I also get hair loss from the medicine ❖It’s a vicious circle I've fallen into |
Patientisation (not a person, but just someone in the system) | 3.2 | ❖I feel that the doctor has to 'check his ticks' - very bureaucratic ❖You can feel like an experimental animal | |
PsO | Social and psychological problems, the shame | 4.0 | ❖Self-esteem disappears ❖Felt like a leper |
Consequence of the disease/the disease itself | 3.2 | ❖People were very focused on my hands (due to the disease) in relation to my job (working with people) ❖Stress can trigger the symptoms | |
CD | Positive attitudes | 4.3 | ❖The future is bright, and I will not let myself be ruled by my illness ❖I cannot change my disease |
Meeting the hospital | 3.6 | ❖I wish some of the meetings could be done electronically ❖You sometimes feel that it is about economics | |
UC | Take responsibility and control over your life | 4.0 | ❖My focus is on a healthier, more balanced life. I am convinced that it has a positive effect on my life regardless of the effect of the medicine ❖It is the disease that must live with me and not the other way around |
The influence and importance of diet | 3.0 | ❖I think a lot about what I eat (what foods) ❖Confusion about diet. There is a lot of contradictory information |
*Mean rating of each concept. (1) ‘not important at all’, (2) ‘a little important’, (3) ‘somewhat important’, (4) ‘very important’ and (5) ‘of great importance’.
AxSpA, axial spondyloarthritis; CD, Crohn’s disease; PsA, psoriatic arthritis; PsO, psoriasis; UC, ulcerative colitis.