Main themes, subthemes (n statements) and illustrating quotes of patients’ needs and expectations regarding rheumatology nursing care
| Main themes | Subthemes and illustrating quotes |
|---|---|
| Needs (I) Education | (1) Understandable tailored information about the disease and its management, including information about medications should be given whenever needed (35 statements). Quote:“(…….) Information is so important. I felt insecure not knowing what was going on”. Female, RA, 61 years old. (2) Education to support coping and self-management (17 statements) Quote: “(…….) I learned how to self inject my medication, and also how to act in case of infection”. Female, RA, 56 years old. (3) Practical support, including information on how to obtain help or assistive devices (16 statements) Quote: “(……)They had a knife, a kind of saw, and a tin opener. These things are helpful, we have to be told about it”. Female, RA, 56 years old. |
| (II) Self-management support | (1) Advices on how to deal with the disease (23 statements) Quote: “(…….) If you need something, that they can help you, show the way. I think the nurse is very important. Male, AS, 76 years old. (2) Learn to clearly communicate (22 statements) Quote: “(…….) I did not know how to explain my limitations to my colleagues and consequently, I could not address them during work”. Female, RA, 47 years old. |
| (III) Emotional support | (1) A listening ear (28 statements) Quote: “(…….) People do not understand. I could talk with the nurse about all my problems. That made me feel well. And she has listened very well. Female, RA, 47 years old. (2) Clear communication (8 statements) Quote: “(…….) Trust. I think somebody should be clear, not too soft. You know, I value the adequate communication. And as I say: it doesn't have to be too soft, it has to be pure and simple”. Female, RA, 59 years old. |
| Expectations (IV) Well organised care | (1) Accessibility of care (13 statements) Quote: “(…….) It is so important that someone is easy accessible, to just give that advice or support”. Female, RA, 54 years old. (2) Knowledgeable professionals (13 statements) Quote:“(…….) Other specialists and my GP do not know what biologicals are so you cannot ask even very simple questions”. Female, RA, 32 years old. (3) Collaborating health care professionals (6 statements) Quote:“(…….) I think that the nurse is in line with the rheumatologist” Female, RA, 47 years old. (4) Coordinated care (5 statements) Quote:“(…….) He takes the phone and makes arrangements. The doctor does not have time for that”. Male, RA, 39 years old. (5) Contact person (6 statements) Quote:“(…….) To know that I can call whenever that is needed makes me feel reassured”. Female, RA, 32 years old. |
AS, ankylosing spondylitis; RA, rheumatoid arthritis.