| Literature DB >> 31768498 |
Kanta Kumar1, Rebecca J Stack2, Ade Adebajo3, Jo Adams4.
Abstract
OBJECTIVE: The aim was to explore the perceptions of rheumatology health-care professionals (HCPs) of interacting with patients of South Asian origin attending early inflammatory arthritis clinics.Entities:
Keywords: early inflammatory arthritis; health-care professional interaction; rheumatology
Year: 2019 PMID: 31768498 PMCID: PMC6862933 DOI: 10.1093/rap/rkz042
Source DB: PubMed Journal: Rheumatol Adv Pract ISSN: 2514-1775
Demographic data of health-care professionals interviewed
| Characteristics | Female | Male |
|---|---|---|
| Age, years | ||
| 25–40 | 3 | 2 |
| 41–55 | 2 | 3 |
| Self-identified ethnicity | ||
| White British | 3 | 1 |
| Afro-Caribbean | 2 | 0 |
| Indian | 1 | 1 |
| British Indian | 1 | 1 |
| Role type | ||
| Rheumatology doctors | 4 | 2 |
| Clinical nurse specialist | 4 | – |
Topics discussed in interviews
| Topics |
|---|
|
Current role in early inflammatory arthritis clinic. Experience of giving information to patients from South Asian background in the early inflammatory arthritis clinics.
How do you tend to deliver disease-related information to patients of South Asian origin? Do you think the way this is done currently facilitates medication adherence and patient motivation? Do you assess patients’ health or illness beliefs? What information do you use to assess those? Views on future development and improvements in early inflammatory arthritis clinics.
How culturally sensitive do you think these approaches are? What can aid a better patient engagement in your view? What resources might help? |
Health-care professionals’ quotes
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Quotes relating to: Q1. My role is to diagnose patients and recommend treatment. If they need extra encouragement, then the nurses normally do that. Q2. I mainly see patients to educate them and monitor their drugs, inform them about disease process and DMARD therapy and how we will aim to treat. I educate about the lifestyle changes patients need to make. Q3. I would say certainly there are complex issues to deal with and one has to take a holistic approach, but who is the person best to do this? That’s the question. Q4. I do feel it’s really tricky to engage with patients from South Asian background in the inflammatory arthritis clinics. Particularly the women. I don’t have the same feeling for the men at all, but the women can be very different and do perceive RA to be burdening more than others. Q5. I tend to start off by saying, what is it that you would like to achieve? For some, it might be just making chapatti is important; for some, it might be looking after the grandchildren. But at least this gives me an idea of what the goal is, and I like to make it personal to them. I think if we can find someone who works with a goal then that becomes easier to work with. Q6. I don’t tend to do the goal setting as I don’t know much about the culture really. I tend to ask how they are feeling, and that sometimes gives me enough to know if the condition is controlled or not. I don’t use a framework, and perhaps I should because we do use a framework for our young adolescents and that works well. This is a good point: why don’t we use this for South Asians? Q7. There isn’t a formal tool that we use or anything like that; it is more what patients express. We normally would like to discuss this with patients. Q8. The leaflets are not good at getting across the harm and benefit balance. I think that most leaflets have been developed with White patients and therefore might not have the input of South Asian or ethnic groups. I suspect that section in the information leaflets is missing. Leaflets, they don’t have reflections from Black minority ethnic groups views on board. I know they revise these sometimes, may be every year or so, but they are mainly done by White patients. So there you go, how we can make things more cultural sensitive. Q9. You see, what we found is that showing patients their problem with joints through an ultrasound helps patients to really get to grips with the condition. Maybe this is more than words can describe. Pictures or making it real with a scan might convince this population. Q10. I think we don’t get to find this (referring to Apni Jung project) information; there needs to be more education about these resources. We don’t have enough time in clinic. Q11. I do get concerned about the level of support that there is for South Asian patients really. I mean, if we look at the diabetic care there is a vast amount of information, and we in rheumatology have very little. On reflection, we can’t blame the patients’ disengagement. We have leaflets, which are all in English. We don’t have any cultural understanding other than our own experiences. It does need improving. We are producing more and more medications, but patients or certain groups are not willing to take the general things, so how will they take the other advanced ones? |
| Quotes relating to: Q12. I know some of them want the cure, and maybe that’s why they don’t like to take all these medications, because they know it will never go away. Some of them do have more pain, and it is repeated in consultations. Q13. I think we only learn from our clinical experience about some problems but not sure how to deal with them. I do note there are very embedded health beliefs, and when patients present in clinic we are not sure how to deal with those and, in fact, to address them. Clinics take longer and extra time. Q14. I feel there is a framework to discuss with family; then it gets decided what will happen. It is really sad that they don’t view the importance of exercising joints. My patients just don’t attend the physio appointments. I know this because there is a letter dedicated to say the person never turned up so options are limited. Q15. We include the physiotherapy in our consultations. We have found that, in this way, our patients will understand the holistic approach and who is who in the team. For South Asian patients, we note they are more likely to attend the appointments for physio if they knew their role in self-managing. Q16. Sometimes the information is not taken seriously, and this is more of a problem with the non-English speaking. Then my view is, well, if you are going to listen to what I have to say then you should at least seek all this from somewhere. So, I am aware that this goes on a lot at the beginning of this journey, and it is long time for having the disease. Q17. I would say, certainly more hierarchy in the ethnic groups. They do view the doctor to be a lot more important. So, if our nurses see a patient and they are not very convinced then they will call me in to discuss this further with the patient. But when a doctor comes in they might be more serious to take the advice. So occasionally, we are asked to add extra visits. Q18. To be fair, I can understand the patients’ perspective and try to get them to engage, maybe better than my White colleagues. I speak Punjabi and Hindi, so sometimes speaking in own mother tongue can help as well. It makes that connection with patients. They are open to more about their plans. For example, like I said, if they are not taking 15 mg of methotrexate then they will tell me what they are doing, like taking the other stuff from India or something. Q19. I grew up in an environment where there were very few ethnic populations. I now work in here, and I don’t really know what the expectations are from disease, and sometimes it is hard to unpick these things. Q20. I think, as health professionals, there is only so much you can do to help others. I mean, South Asian patients, particularly non-English speaking, decide not to take on what we say; therefore, there is not much I can do about that. Q21. There is a lot of weighing up and down going on. There is also a lot of discussion with family, and it takes some time for patients to decide about medication. Sometimes you never know what the patient or family want so just have to go with the flow. Sometimes this causes more discussion and more appointments. I find sometimes it is very challenging and frustrating to know how to move forward. Q22. I find a big difference in generations, like the more acculturated ones will understand our viewpoint, but first generation are not always on board. Q23. I think, to a certain extent, we do lack knowledge about how to deal with ethnic minority populations. I mean, do we even know how to address some of the things? I bet some us don’t really get to the bottom of a consultation. I do think we need to improve this if we are to move forward. Q24. There might be the fact that people are not happy to take long-term medication. I can normally tell that from their body language. We can only tell them what we know and give them what is best to control, and this doesn’t match their expectation. I feel that ethnic groups might not see the benefits so easily. Medications are toxic, and to be honest they are, but in a White patient you might hear, oh well at least I tried it, but here there might be more thinking going on. |
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Quotes relating to: Q25. It is all about rapport building, but I don’t think I can or ever have achieved with a patient from an ethnic background simply because I have limitations on my part and a fear of not fully consulting about their health beliefs. So, a lost opportunity really. Q26. We are all very busy, and in order to move forward we should champion someone for each department who can update every about research in this area and resources around. Like this Apni Jung with NRAS, some know and I meet still a lot of people who don’t know about it. Q27. I think, in years to come, we do need to understand a lot more during consultation. Rheumatology training is all about how to manage the disease, but sadly less on how to manage the person. So, if you could get this onto the rheumatology training for registrars and others then that would be great. Q28. I think that’s something we can learn in these training sessions. Coming from White backgrounds, we don’t always allow the discussions. I am a typical middle-class person who has little knowledge about different cultures. The things I have learnt are what I have picked up along the way. I think learning more about these models might be more useful, in that training for people like me and being verified by people, maybe like you, who know the research would be a great resource. Q29. We know how to take good medical history but not how to use models in clinic that can explore patients; in this case, minority ethnic patients’ views about engagement. To feel that confidence in clinic, it would be good to know more, and more techniques like motivational interviewing skills. I would like to hear South Asians’ views or heritage they bring to consultation. Q30. We know that there is a need to move forward and do things differently with South Asian patients but fear also, if we employed new skills, would they work? Q31. I think we should have a programme for professionals, as cultures and beliefs are very different, and trying to make sense of these can be a job. We only need to look at other specialities, like cancer, they do… Q32. A framework to explore illness beliefs. I think someone like yourself, who might be used to these concepts, can maybe use these in clinic, but a lot can’t do this. So, I think something on that will be useful, like how to use self-efficacy with patients. Q33. We could be better at this, but since we are limited in our full understanding of what really motivates patients or expectations then we are not perhaps getting the whole story or patient on board. We have limited time in the day. We should have support from British Society for Rheumatology really to do these things. Q34. The only way we are going to improve this situation is if we train and gain more skills on how to manage ethnic minority patients in clinic. I think Arthritis Research UK or British Society for Rheumatology should support things like this really. We try our best to follow clinical pathways, but something is missing. One thought is, should clinicians go on compulsory cultural training if you are appointed in a hospital that has so many minority ethnic patients? |
. 1Thematic diagram of health-care professionals’ experiences of interacting with patients of South Asian origin