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.
Methods
We used face-to-face semi-structured interviews, designed in partnership with a clinician partner, to interview 10 HCPs involved in the running of early inflammatory arthritis clinics across seven centres in the UK. Data were recorded, transcribed by an independent company and analysed using inductive thematic analysis.
Results
Three emerging themes were identified that characterized consulting experiences of HCPs: varied approaches were used in early inflammatory arthritis clinic; the challenges for rheumatology HCPs in managing and delivering information to patients of South Asian origin in early inflammatory arthritis clinics; and moving towards good practice, the views on managing future patients of South Asian origin in early inflammatory arthritis clinics. Overall, HCPs found that they required additional skills to support the engagement and management for patients of South Asian origin living with inflammatory arthritis. The HCPs felt that they were less effective in addressing self-management issues for this patient group, and they found it difficult to determine adherence to medication. In such consultations, HCPs perceived that their own limitation of inadequate training contributed towards poor consultations.
Conclusion
For the first time, our data demonstrate that the management of patients of South Asian origin in early inflammatory arthritis clinics is under-served. To address this, HCPs have identified training needs to improve knowledge and skills in engaging with and supporting patients of South Asian origin. These findings provide a good direction for future research.
Keywords: rheumatology, health-care professional interaction, early inflammatory arthritis
Key messages
Health-care professionals play an active role in managing patients of South Asian origin but lack confidence.
Tailored training programmes may improve the confidence of health-care professionals in interacting with patients of South Asian origin.
The training needs to address both consultation skills and the establishment of culturally sensitive services.
Introduction
Today, rheumatology departments around the world are seeking to promote a health-care system that is patient centred, in which the patients are actively involved in their treatment plan [1]. From a patient’s perspective, the ideal health-care setting that includes educational input about their disease together with help from a multidisciplinary team is favoured [2]. Because of this, the traditional ‘one-size-fits-all’ approach should be abandoned. Internationally, RA is one of the most common forms of inflammatory disease and has become increasingly morbid and costly [3]. The disease significantly impacts on every aspect of a patient’s life, particularly on work patterns, which adds to the financial burden [4, 5]. Effective disease management can be achieved by seeing the patient in early inflammatory arthritis clinics. Early detection, initiation of treatments and positive patient engagement can control disease activity significantly [6]. However, few patients with RA achieve the control needed to avoid complications. Furthermore, minority ethnic populations are disproportionately at high risk of poorly controlled RA [7]. Lack of awareness about RA, delays in seeking medical help at the onset of symptoms and lack of educational resources, in addition to differences in knowledge and health beliefs about RA, contribute to poor outcomes [8, 9].
There are marked differences between RA in ethnic groups around the globe in terms of adherence to medication and perceptions of RA being a curable disease [7, 9]. The world is increasingly becoming a global village, and across chronic conditions, health-care professionals (HCPs) see more culturally diverse patients than ever before, with many different cultures, languages and traditions living together as multicultural societies [7, 10–13]. Like other parts of the world, the UK has a minority ethnic population of 7.9%, with Indians being the largest minority group, followed by Pakistanis [13]. Consequently, together, South Asians make up an overwhelming majority of the ethnic minority population of the UK. Similar to other diseases [10, 11], in RA, cultural factors influence beliefs, behaviour, perceptions and emotions, all of which have been reported to have important implications for health and health care [7, 9]. Many challenges stem from the consultation process. Patients of South Asian origin with RA are reported to favour discussions about disease causation and a treatment plan with a wider understanding that conceptualizes their thinking [14]. Sometimes, this approach may be viewed as ‘difficult’ by HCPs and may lead to negative judgements [14]. Psychological theories have widely captured patients’ process of rationalization about having long-term conditions and treatment [15].
Despite these theories aiding HCPs’ understanding of patients’ perspectives, some rheumatology HCPs who deal with minority ethnic populations are presented with challenges in engaging with patients of South Asian origin attending early inflammatory arthritis clinics. It is important to explore these perspectives, because engaging with patients at an early stage provides a platform for a long-term relationship and optimizing the best clinical outcomes [16]. Our recent study that explored South Asian patients’ experiences of attending early inflammatory arthritis clinics highlighted that there was room for improvement of the care delivered to this population [17]. In that study, patients made useful recommendations for future clinics. In order to implement the lessons learnt from the patients’ perspectives, we wanted to widen our understanding of clinical experiences. Currently, there are limited data that document the experiences of rheumatology HCPs dealing with minority ethnic patients. In the present study, we explored rheumatology HCPs’ perception of interacting with patients of South Asian origin attending early inflammatory arthritis clinics and aimed to understand the facilitators and barriers to effective clinical interaction among minority ethnic populations, with consequent global lessons.
Methods
Theory is interchangeably used in qualitative research [18]. We began from the position that rheumatological conditions have public health dimensions [19]. The disease onset strongly shows patterns of cultural influences and social determinants of health [19, 20]. To explore the interactions of HCPs with patients of South Asian origin, our orientation of theory centred on thematic analysis. Thematic analysis is known as a method in its own right that is not bound to any theoretical framework, complementing the pragmatic approach that we took in this study [21]. Pragmatism is guided by the researchers’ desire to produce socially useful knowledge and takes a bottom-up approach [21].
An in-depth, qualitative interview study involving 10 rheumatology HCPs across seven centres in the UK, including a mixture of consultants, registrars and specialist nurses, was conducted. We used thematic principles because they allow the researcher to collect data for the purpose of generating a framework to understand the HCPs’ experiences [18, 22]. The reporting of this study falls in line with consolidating criteria for reporting qualitative research [23].
Using purposive sampling, we recruited HCPs from White British, Afro-Caribbean and South Asian backgrounds, those who spoke South Asian languages and those who did not, and a mixture of genders (Table 1). The recruitment of HCPs took place from academic linked hospitals and general hospitals. This enabled us to explore a broad range of HCPs’ experiences in serving South Asian populations in early inflammatory arthritis clinics. A semi-structured interview schedule, designed and developed with a clinician partner, was used to conduct 10 interviews with rheumatology HCPs who were involved in the running of early inflammatory arthritis clinics (Table 2). Ethics approval was granted by the South West-Frenchay Research Ethics Committee (Reference 234815). Rheumatology HCPs were contacted by email via a regional rheumatology mailing list and were invited to take part in qualitative interviews, lasting ∼45 min, on their experiences of interacting with patients from a South Asian background in early inflammatory arthritis clinics. Those who expressed an interest were interviewed (for details, see the Results section). Written informed consent was obtained from each HCP before interview. Interviews were conducted by K.K., an experienced researcher with rheumatology expertise. K.K. is also of Indian origin. Eight interviews were conducted face to face and took place in the hospital rheumatology department where the participant practised; and two were conducted over the telephone. Interviews were audio-recorded, anonymized and transcribed verbatim by an independent transcription company.
Table 1.
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 | – |
Table 2.
Topics discussed in interviews
| Topics |
|---|
|
Data analysis
Given that our study was not based on grounded on another phenomenology framework, data were analysed using a form of thematic analysis. Analysis began shortly after initial data collection. An iterative coding procedure, in accordance with principles of inductive thematic analysis, was used [22]. An analysis approach appropriate to applied health services research, enabling investigation of issues while simultaneously allowing for identification of newly emergent ideas in the data, was used [22]. For all interviews, the progressing analysis informed subsequent data collection. At the end of each interview, a summary of findings was discussed with HCPs for agreement. Interviews continued until the main data categories were saturated and no new insights were apparent. The team included diverse expertise: a rheumatologist (A.A.), health psychologist (R.S.), research partner (E.P.) and health literacy expert (J.A.) and all contributed different expertise to data analysis.
Rigour was achieved through a process of reflexivity and by documenting all analytical decisions, leaving an audit trail. The first author (K.K.) systematically analysed all the transcripts to establish themes grounded in the data. In this process, transcripts were read and reread line by line. The clinician research partner (E.P.) independently coded three transcripts to develop reliable and inclusive themes informed by multiple perspectives. The triangulation process and discussion of the coding framework took place between the researchers (K.K., A.A., R.S., E.P. and J.A.), who compared codes to solve any differences. This process allowed researchers to validate trustworthiness of the data. All transcripts were checked for the emerging new codes identifying data saturation. The team further read and analysed random selection to confirm interpretation of codes. Codes were grouped into categories discussed and revised by the team and then were grouped into themes. Coding categories that lacked concordance were discussed and absorbed into the coding framework. The core themes extracted and presented here focus on HCPs’ perceptions of interaction with patients from a South Asian background in early inflammatory arthritis clinics. Initially, 182 codes were identified, which were then grouped into 35 categories and finally combined into three overarching themes. The final report was sent to participants, who did not make any changes.
Results
Ten rheumatology clinicians (six rheumatologists and four nurses), from seven academic linked and National Health Service (NHS) hospitals across the UK, took part. In total, 18 were approached to take part in the study. However, owing to work commitments eight HCPs were unable to fix a time for interview. The declined population included five men and three women. Of the 10 who took part, there were seven women and three men, ranging in age from 29 to 62 years (mean 45.6 years) and qualified from 8 to 35 years (mean 20.3 years). Suitable quotes were selected to illustrate the findings. These are presented in Table 3. The three predominant themes enhanced our understanding of HCPs’ perceptions of interacting with patients from South Asian backgrounds in early inflammatory arthritis clinics. See Fig. 1 for a thematic diagram of HCPs’ perceptions of interacting with patients of South Asian origin in early inflammatory arthritis clinics and supporting the management of RA.
Table 3.
Health-care professionals’ quotes
|
Quotes relating to: varied approaches used in early inflammatory arthritis clinic.
|
Quotes relating to: experience of managing and delivering information to patients from South Asian background in early inflammatory arthritis clinic: rheumatology health-care professionals’ challenges.
|
|
Quotes relating to: moving towards good practice: views on managing future South Asian patients in early inflammatory arthritis clinics.
|
Fig. 1.
Thematic diagram of health-care professionals’ experiences of interacting with patients of South Asian origin
Varied approaches used in early inflammatory arthritis clinic
Rheumatology HCPs in the study described their roles. The doctors viewed their aim of consultation being focused primarily on diagnosis, assessing physical symptoms and function [Quote (Q) 1]. The clinical nurse specialist described their role more broadly, where they included a focus on educating patients and providing them with information on lifestyle changes (Q2). The doctors were familiar with a model of care that emphasized a holistic mind and body interaction and recognized RA as a complex disease, with a range of psychological, social and physical sequelae, but questioned whether the needs of patients were addressed adequately (Q3). The HCPs acknowledged that the patient-perceived burden of having RA would impact patients from a South Asian background in many different ways (Q4). Some doctors reported the use of goal-setting techniques with their patients; however, this approach was used only by a few doctors from minority ethnic backgrounds (Q5). The accounts of doctors from a White background described less sophisticated management approaches that were not embedded within behavioural theoretical models (Q6). Although the clinical nurse specialists described playing a broader role in early inflammatory arthritis clinics, they too were less likely to use strategies that motivate patients at an early stage in the patients from minority ethnic backgrounds (Q7). Both doctors and clinical nurse specialists tended to use standard leaflets to help support their discussions during consultations. There was recognition that the leaflets presented a limitation for non-English-speaking patients (Q8). Only one centre used visual representation to communicate disease-related information. The HCP at this centre expressed the view that the visual representation material helped in engagement with the problem and need for treatment, particularly for patients with a lower level of literacy (Q9).
Within their varied approaches used to engage patients from a South Asian background, there was a lack of knowledge about resources available that could assist HCPs in educating patients of South Asian origin (Q10). Only a few centres were aware of the National Rheumatoid Arthritis Society (NRAS) Apni Jung webpage (our fight against rheumatism; www.nras.org.uk/apnijung). The reason for this was cited as lack of time to signpost and, for some, lack of knowledge about this project. The HCPs recognized that RA could be a demanding condition, with an impact on patients’ emotional wellbeing and quality of life; however, they were less likely to undertake structured behavioural approaches. The HCPs concurred on the perceived lack of shared management of RA in patients of South Asian origin and that the condition was not subject to the same level care as other long-term diseases, such as diabetes. Specifically, patients’ needs for information, decisions to take medication, support for self-care and coping were problematic (Q11). Systems for adequately supporting these needs were perceived as lacking in early inflammatory arthritis clinics.
Example quotes from HCPs:
Q4. I do feel it’s really tricky to engage with patients from South Asian backgrounds 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. [White British, consultant, female]
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 good point: why don’t we use this for South Asians? [White British, consultant, male]
Experience of managing and delivering information to patients from a South Asian background in the early inflammatory arthritis clinic: rheumatology health-care professionals’ challenges
The HCPs considered consultation for widespread pain to be higher among patients of South Asian origin compared with the indigenous UK population. They reported that it was not common for patients of South Asian origin to consult with symptoms but present these as new at every visit, possibly in the hope of obtaining alternative medication or a cure (Q12). The HCPs were familiar with the concept of illness belief models that some patients of South Asian origin hold, and they recognized their own limitations in informing these with their patients during clinic consultation. The HCPs reflected on their experiences and noted South Asians take longer to make decisions about their treatments; therefore, they require more time and sometimes extra clinical visits (Q13). The HCPs expressed that despite their effort in supporting self-management, some patients of South Asian origin validated information with families and did not always attend the multidisciplinary team appointments. An example of this was physiotherapy (Q14). The HCPs expressed difficulties associated with engaging some patients and often noted that their approach and methods were not effective in engaging patients of South Asian origin attending physiotherapy appointments. Only one centre included physiotherapy treatment as part of the consultation supporting patients to understand the role of the multidisciplinary team and the purpose of involving different HCPs in their care (Q15).
The HCPs suggested that providing information in English to non-English-speaking patients of South Asian origin on RA and treatments was not often seen as useful. Moreover, HCPs felt that non-English-speaking patients of South Asian origin did not actively seek information about their RA and management (Q16) and that HCPs should provide some additional support to facilitate this. Some consultants reported their experience of hierarchy amongst first-generation patients, where patients viewed a doctor’s opinion to be more valuable than that of other HCPs (Q17). The HCPs who were from the same ethnic background as the patient found that communicating in the patient’s native language helped to build better rapport and enabled such approaches as goal setting to be implemented much more effectively (Q18). In contrast, HCPs who were from White origin backgrounds expressed challenges in engaging with some Asian patients, particularly those who were non-English speaking (Q19). Owing to cultural barriers, some doctors from a White origin background acknowledged difficulties in managing patients of South Asian origin. This mirrored the accounts of doctors who believed there was little they could do to help with RA management and were consequently reluctant to consult fully with patients (Q20). The manner in which patients of South Asian origin present and express their concerns was perceived to be culturally influential during the consultation process. Many HCPs reported that patients of South Asian origin present more frequently (Q21). The HCPs described circumstances in which clinical presentations were florid, posing challenges and frustration for the HCPs to treat and manage patients (Q21). The HCPs found that second- and third-generation South Asians presented differently from non-acculturated South Asians and were similar to patients from a White British background (Q22).
The difficulties associated with managing patients of South Asian origin living with RA pose personal challenges for HCPs, causing some HCPs to question their training and value to the community (Q23). Adherence to medication was also noted and difficult to determine during consultation. The HCPs reported feelings of their own limitations and lack of knowledge and skills when patients repeatedly failed to adhere to previously prescribed medication, and it was acknowledged that a focus on disease cure was prioritized by patients (Q24). The HCPs reported that building a strong doctor–patient relationship was important; however, this was perceived to take a long time with patients of South Asian origin for HCPs who were from a White origin background.
Example quotes from HCPs:
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. [Indian, consultant, male]
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. [White British, registrar, female]
Moving towards good practice: views on managing future patients from South Asian background in early inflammatory arthritis clinics
The HCPs in this study discussed the concept of a collaborative relationship between the clinician and the patient and noted this to be the cornerstone of more effective patient engagement. However, owing to their own lack of awareness about different cultural values and how to tackle some health beliefs held by minority ethnic populations, they lost the opportunity to explore these and were unlikely to apply goal-setting techniques during consultations (Q25). A few doctors suggested having departmental champions who could act as ambassadors for updating on health diversity agendas, because some were not fully aware of updated research on ethnicity in rheumatology practice (Q26).
The accounts of most HCPs from a White origin background indicated self-reported low levels of expertise and confidence in the management of patients from minority ethnic backgrounds living with RA, which they blamed on lack of training opportunities (Q27). This appeared to be more apparent for those HCPs who might have trained in non-ethnically diverse environments but now worked in hospitals serving a large minority ethnic population (Q28). In contrast, HCPs of South Asian origin felt that they were at an advantage in communicating with patients of a South Asian origin.
During the interview, many HCPs of White British origin reflected and recognized the need for development of culturally specific skills that could better assist them in engaging with the minority ethnic populations in consultations. All HCPs said that having the skills to apply theory underpinning illness health beliefs and self-management would be useful to strengthen their confidence in managing minority ethnic populations better (Q29). The HCPs stated that it would be helpful to try new approaches, which might offer more to both the patients and the HCPs, given the time constraints to see patients. A concern experienced by many HCPs was in relationship to using new skills competently in minority ethnic patients, and how to respond if complex psychological difficulties emerged in a consultation (Q30). A clear sense emerged that formal training would be the start of a learning process for managing patients from minority ethnic backgrounds. The HCPs described how they could use theoretically driven strategies to support minority ethnic populations and enhance shared care decision-making in clinical practice after training (Q31–Q34).
Example quotes from HCPs:
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… [Afro-Caribbean, registrar, female]
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. [White British, consultant, female]
Discussion
This is the first study to present the perspectives of rheumatology HCPs’ perceptions of interacting with patients of South Asian origin attending early inflammatory arthritis clinics. We have documented different approaches used by HCPs in engaging patients from minority ethnic backgrounds, but only a very few consultations were based on any underpinning behavioural change theory. There were many challenges described by HCPs, and signposting to specific resources that could have allowed patients of South Asian origin to better engagement was not always optimized. Educational materials currently available to non-English-speaking patients of South Asian origin were also presented as challenges by HCPs.
We have found two key directions from HCPs that affirm future steps. Firstly, all HCPs may require a better understanding of implementing health-related theory models and skills, such as motivational interviewing, into their consultation when engaging with patients of South Asian origin. In our study, HCPs identified the need for training and reflected that theoretical models could be used better to guide consultations. Theory-based interventions with advanced skills have been tested and recommended to improve the patient–clinician relationship [24], allowing the opportunity to generate an improved engagement and increase the likelihood of wide adoption of self-management by patients [25]. In our previous study, in which experiences of South Asians attending early inflammatory arthritis clinics were explored, we reported a massive impact of RA on patients’ psychological status [17]. The psychological burden and tension were reported to increase owing to lack of effective interaction with HCPs to manage RA. The results of HCPs’ experiences of interacting with patients of South Asian origin affirm the reasons for lack of interactions in clinics. Our data suggest an opportunity to help embed skills in clinical practice and develop advanced techniques to move forwards. Transfer of training theory proposes that higher levels of shared care decision-making might increase the likelihood of successful outcomes [24]. This was found in research into brief cognitive-behavioural training for clinicians working in cancer [26], where clinical consultation was based on necessity and needs of patients, and HCPs trained to address concerns effectively, maintain skills and build confidence. In our study, HCPs in one centre identified the creation of advanced techniques and used different modes of communication, whereby use of diagrams and showing pictures of joints during US consultation was found to be particularly useful for non-English-speaking patients. That centre used this approach to communicate disease-related information to patients with lower literacy levels and perhaps less acculturated in the western systems. This extends our understanding that going beyond traditional consultation styles may reap meaningful rewards. For example, pictorial or visualizing types of materials can be helpful to communicate disease-related information [27]. Surprisingly, visualization during consultation was used in only one centre, although previous studies have shown that this method of engagement helps patients to reduce their treatment-related concerns that lead to non-adherent behaviours, particularly among patients of South Asian origin living with RA [7]. Moreover, other specialities have shown that visualization when used within self-regulation theory [28, 29] assists patients in rationalizing their disease process and understanding the long-term need for treatment [30, 31]. This is particularly helpful for engaging minority ethnic populations, who have been known to seek a cure for the disease and often lack motivation to adhere to treatment [32]; moreover, they were reported to have frequent hospital visits in our study.
Secondly, HCPs who were not from minority ethnic backgrounds strongly recommended advanced cultural competency training for rheumatology practitioners. Our findings resonate strongly with those of previous researchers [33], who have shown that HCPs consulting with minority ethnic populations are not always equipped with appropriate training to address the culturally sensitive issues and how these drive clinical decisions [34, 35]. Cultural competence training in specialities such as diabetes has been shown to improve patient outcomes [10, 36]. A systematic review of 34 studies by Beach et al. [37] found that training clinicians improved knowledge in 17 of 19 studies skills and attitudes in 21 of 25 studies. Likewise, another systematic review [38] found that five studies showed that cultural competence training of HCPs resulted in improved patient satisfaction and better understanding of the treatment plan [39]. Others noted an improvement in clinical variables in diabetes [39]. This was echoed by another systematic review [40], in which 13 studies of HCPs and diabetic patients concluded that cultural competence training increased clinicians’ knowledge about and awareness of dealing with culturally diverse patients and cultural sensitivity. Moreover, cultural awareness has been highlighted in areas such as general practice [41].
Our study has limitations. We recruited a relatively small sample size, which might not have enabled us to reach data saturation. However, we were able to explore a broad overview of the rheumatology HCPs’ perspectives of interacting with South Asian patients attending early inflammatory arthritis clinics across seven centres in the UK. Alternative methodology, such as the use of focus groups, could have enabled a more in-depth analysis of each clinic, which might have offered useful insights of patient journeys and experiences. Having conducted our interviews face to face and over the telephone could have introduced some unintentional bias. Nevertheless, we elucidated the views of HCPs and captured their experiences regarding what would help them to conduct effective consultations in early inflammatory arthritis clinics across the UK.
Conclusions
It is clear that rheumatology HCPs, particularly those from non-South Asian backgrounds, believe that they need an advanced understanding of cultural skills training and currently find consultations difficult when dealing with minority ethnic patients. Moreover, all HCPs may require a better understanding of theory-related health models to enhance consultations. The training needs to address both consultation skills and the establishment of culturally sensitive services. These findings provide a good direction for future research. Our study provides an example that can be used internationally for all rheumatology departments that treat patients from a variety of ethnic backgrounds. The issues identified here should provide an example for all health-care professionals working to develop culturally competent staff and deliver culturally appropriate services to all patients.
Acknowledgements
We thank all health-care professionals for taking part in the study. We thank our clinician research partner (Emma Powell) for assisting us with study design, development of the interview guide and data analysis.
Funding: This study was funded by the British Society for Rheumatology [grant number 17–1420]. The funder had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Disclosure statement: The authors have declared no conflict of interest.
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