Table 2.
Patient quotes to illustrate the findings
| Quotes relating to: the personal experiences of RA and cultural link to early inflammatory arthritis clinic |
| Q1. When they told me about this disease I was really very upset. For weeks I didn’t get why the swelling was so aggressive. I felt very helpless and resented this part of life because it affected my hands mainly. I wasn’t able to do much of my tasks; that really did bring my mood down, and I felt depressed. [English speaking, teacher] |
| Q2. The shock of it all was too much and I couldn’t believe how quickly it changed my life. I had to stop work then tried controlling the symptoms but never was fully back at work. The condition changed everything in my life. [English speaking, legal officer] |
| Q3. I had a career ahead of me, but I have had to pass on all my big responsibilities to my colleagues. That has left me feeling down and undermined a bit at times. [English speaking, sales manager] |
| Q4. I worked in a factory. First, I had to bring my hours down, but gradually the work wasn’t going to fit in this very up and down disease. One day I was good and next all my joints would be swollen. [Non-English speaking, factory worker] |
| Q5. I feel very weak now to deal with this. I feel as if I don’t have the energy to deal with the unfamiliar pattern of symptoms. [Non-English speaking, retired] |
| Q6. I’m managing rheumatoid arthritis between two worlds. I am trying to understand what’s going on with my body and on the other hand my husband isn’t being supportive. You see, in our culture, having a long-term disease is like a punishment because our family can’t understand why treatments don’t work. [Non-English speaking, factory worker] |
| Q7. You don’t get the same respect when you have an illness as you would otherwise. It is battle in changing the role. [English speaking, legal officer] |
| Q8. You see, in this country it is alright if you are ill, and people or their families will adapt. But in our culture it is very difficult to be in that role. Like in Pakistan it is not welcomed to have long-term illness. The community doesn’t understand as it does in the western world. So it is not easy for us to adapt to the illness; we have to show we are well. [English speaking, retired owing to RA] |
| Q9. I am only young and now I can’t do my work like I used to. I had to give up my job because I couldn’t balance the two things [house and work]. So my husband said it is not right for me not to pay attention to my house. I have to do my duty at home so I feel it is really difficult in our culture to put the two views of western and our views together. [English speaking, retired owing to RA] |
| Q10. My children really support me. My husband didn’t at the start but now he does support me. [Non-English speaking, retired] |
| Q11. When I tell my husband the symptoms are not fully controlled, he does get fed up. He has said to re-marry, which makes me feel very invalid and not valued as a person. It wasn’t my choice to have the disease. [Non-English speaking, home maker] |
| Q12. I know I shouldn’t feel like this but I do think that I am alone in this journey trying to cope because the community doesn’t like to hear from people who are not well. They can be very harsh. [English speaking, teacher] |
| Q13. I try not to attend family functions because I know what will happen. I get asked about my condition and I don’t feel I want to discuss it so I make excuses not to go. I will sit there very quietly; it makes you feel you are alone in this. [English speaking, retired owing to RA] |
| Q14. I don’t think my husband really understands my symptoms and why I have them despite being on treatment. Sometimes I feel so isolated in this disease. [English speaking, teacher] |
| Quotes relating to: experience of interacting and receiving information in the early inflammatory arthritis clinic |
| Q1. When I was told by my GP [general practitioner] that I was going to see the specialist at the hospital, I thought great, now I was going to get better. I thought I had a very good doctor looking after me and I was told I had the best treatment. After a few months I was still the same. I was disappointed with the information. [English speaking, factory worker] |
| Q2. At the start all was going well. I had my doctor giving me these tablets [CSs] and information on this and how it would make me better. I was really well on them, I was like a new person, but after 9 months things went worse and I am still the same when I first started with the symptoms. But I know now they can’t cure this. [Non-English speaking, home maker] |
| Q3. I was really happy with my treatment. My doctor was trying medicines and I was doing the housework and even used to go out for walks. I used to follow the advice by him. I thought I was really going to get better. I don’t know what happened. After that, I was ill again. I wasn’t getting an answer from my doctor why this came back, and since then it never got better. I kind of lost trust now. I feel the information I was given didn’t match with disease coming back. [Non-English speaking, home maker] |
| Q4. At the beginning, there were so many blood tests and information on that. I thought this is great, they are getting me better. But slowly I realized that focus on blood tests was just on monitoring me, which I understand, but I felt that staff could have talked to me more about what I can do myself. At the end, we all learn it is never going to go away. [English speaking, sales manager] |
| Q5. I would have wanted to know more information on what I could have done. There was a massive focus on blood tests; every visit was about blood tests. This sort of gives you false hope really. [English speaking, lawyer] |
| Q6. What is fatigue? Never heard of it! [English speaking, sales manager] |
| Q7. I didn’t know about fatigue. I don’t really know we manage this. This was not discussed with me. [English speaking, office worker] |
| Q8. The leaflets are given, but what good are they? I don’t see how this can help us, like I have different things I have to deal with in my family. I think this information is based for English people. [Non-English speaking, home maker] |
| Q9. The leaflets are not good for me to understand my long-term life with this disease. [Non-English speaking, retired owing to RA] |
| Q10. I had pictures shown to me on the computer. The nurse explained why the swelling was coming to my joints. I could see that they were trying to stop the swelling getting worse. She would show me the same pictures that reminded me what was being achieved. [English speaking, retired owing to RA] |
| Q11. I don’t think the doctor understands my culture. I had lots of changes to my life, and none of this was discussed. When I was going through a very rough patch with my husband, he couldn’t understand my illness. I felt no point saying this to a doctor who is not from culture. [Non-English speaking, retired owing to RA] |
| Q12. Personally, I don’t think doctors from other backgrounds can understand other cultures. I didn’t discuss much about this. Nor was it asked like how has my role changed and did I need help in understanding that. [English speaking, retired owing to RA] |
| Q13. I felt bad to discuss that my family were not supporting me. I know that I could have talked about it, but I just didn’t want everyone to know all this so didn’t get much help really. [Non-English speaking, home maker] |
| Q14. What I don’t understand is that a doctor knowing this isn’t going to be cured or go away completely – why don’t they discuss what patients can do to help themselves? Like in other diseases, there is a lot about lifestyle changes, but I felt I wasn’t doing enough to help but kept thinking there isn’t anything else I can do. [English speaking, factory worker] |
| Q15. I don’t even know what others in the team do. I must say I didn’t go to the exercise clinic [meaning physio]. I didn’t think they could help my swelling. [Non-English speaking, home maker] |
| Quotes relating to: views on future content for early inflammatory arthritis clinic |
| Q1. You see, if I was told all the things I can do at the beginning it would have made me feel part of the managing the disease. We can’t rely on taking medication alone. Like this tiredness; I get it very bad. You said ‘fatigue’. If I can know what to do with this, I can start doing it. That will keep me thinking that I am psychologically taking part, but at the moment I don’t think I am taking part. [English speaking, factory worker] |
| Q2. Like in diabetes patients, they know how well they are doing. They always try to keep their sugar level down. Is there anything I can do to keep the swelling down? I think if my doctor told me more, like the sugar level, I can try to tell myself, look I am alright. [English speaking, retired owing to RA] |
| Q3. I hear my friends say look my condition is under control. They know about the sugar level. Doesn’t this condition get under control? We need to know all that information. [English speaking, sales manager] |
| Q4. Do you even know how much our Asian people try addition management with being diabetic? They take the tablet but also keep an eye on their sugar level. The problem is that this country isn’t good with weather; otherwise, people would walk and exercise. But I do know lots of people who know that the only way to control their diabetes is to control what they eat. I myself have found that eating or not eating certain things do add to disease control. So put this information to patients. Because people think, or even me when I started, my problem is in my joints, so the swelling can be only be cured by treatment. But you can make it worse by putting the wrong things in your body. [Non-English speaking, home maker] |
| Q5. So the diabetic patient, like you said earlier, would know that they need to lose weight, cut on sugar and fried food. In our Asian culture, we have lots of sweet things at wedding parties, like, so that patient will be aware. When I look back, I was told that I need blood tests. I was shown pictures, but what I could do to help wasn’t really clear. [English speaking, retired owing to RA] |
| Q6. Okay, so now when I look back now, it is long-time disease like the sugar disease, like that kind of thing. So you can tell patients, like, it is like sugar disease, it will be better one day and not better on another day. I think the way I have made myself understand this disease, like the sugar disease, like the sugar disease. [Non-English, factory worker] |
| Q7. So I think for the future patients, doctors and nurses should inform us that this is like that sugar control. [English speaking, teacher] |
| Q8. Like in sugar disease, they say oh my sugar level is good, and I will say to my friend what is your level? She will say, oh mine is 4.5 and it remains on that now for last 5 months. You can tell patients what they should do to control this condition. I know physio gets mentioned, but it should be explained that it is part of getting control like diabetic patients do. [English speaking, office worker] |
| Q9. My friend has got her sugar level under control. She will say, I cut down on fatty things and sugar things. But here we could control our fatigue if that can control our mood, can’t we? But that’s never discussed. [English speaking, retired owing to RA] |
| Q10. The pain is big in my condition and sugar level is big in diabetes, but if we look at diabetic patients, they are really on the go to control their condition. Like physio can be part of my clinic when I see the nurse, why separate? I can know how she will help, and we can meet again to make exercise plan, but physio needs to be at my clinic appointment. [English speaking, sales manager] |
| Q11. Please can you make sure that in the future we get some information about diet. Like my Asian people tell me that you should stop red meat and fatty heavy food, some other things don’t suit me. So what they should have said to me at the start, to keep a diary and watch the things that upset me. I asked a number of times about the diet, and they said oh no you can eat, but when I tried my relative suggestion, I found that helped my pain. If I was a diabetic, a dietitian would have spoken to me. Why don’t they in this clinic? [Non-English speaking, home maker] |
| Q12. I think staff should discuss with me the impact of this. I don’t think they talk about this much, maybe because of time or is it they don’t want to. I think there should be an open discussion how this condition is mentally affecting me. [English speaking, lawyer] |
| Q13. I don’t think there is enough discussion about this fatigue or on how it should be managed. Again, if I was a diabetic I would have been told all the points to manage with support. Even depression, no one wants to talk about it. [English speaking, legal officer] |
| Q14. This should also be like the diabetic plan. It is very important, and people need to know of this early. Not 1 year down the diagnosis. I do think if people understood the reasons, and in Asian patients it might take long to understand, but tell us in the form it makes sense. [Non-English speaking, retired owing to RA] |
| Q15. It might not be possible for staff, but it would be nice if they can understand where I am coming from. Like training or something. I don’t think they want to discuss, but that means I have to either try to manage myself or it can be very isolating. [English speaking, sales manager] |