Medication concerns | A risking to stability: ‘It takes a long time to get stable, I didn’t want to mess with that’ (patient 3). Previous switching experience: ‘I felt terrible for 6 months’ (patient 1); ‘It was quite hard, I was quite poorly’ (patient-participant 3); ‘I didn’t want to start having side effects again’ (patient 4). Irreparable deterioration: ‘these [tablets] allow us to live our lives. You don’t to start messing with that in case you can’t get it back (patient 4). |
Accessibility of materials | Patient information sheet: ‘It was a bit ‘sciencey” (informal caregiver 1); ‘it was long […] it took some effort to read’ (informal caregiver 2); ‘it is too complicated’ (patient-participant Inconvenience: ‘the hospital trips, we weren’t keen on the driving (px1); with all the visits, fitting it all in would have been difficult for us (informal caregiver 2). |
Fear of unknown | Research process: ‘I thought that it was quite a complex study’ (patient-participant 2); ‘I thought it meant testing brand new drugs’ (patient 4). Research team: ‘I think there is a trust thing isn’t there’ (informal caregiver 3); ‘I suppose others would be more comfortable’ (patient 3). |
Caregiver workload | ‘Her getting worse was a problem for me, because it would be a problem for me’ (informal caregiver 3). ‘If I got worse then he would have to help get about you see. I don’t like to ask him to do more for me’ (patient 3). |