Distrust and patients in intercultural healthcare: A qualitative interview study

Inclusion criteria

First-generation immigrants from African and Asian countries, at least 18 years of age, who were or had been patients in the hospital’s medical unit or outpatient clinic and were able to complete an interview were selected. The respective units’ head nurses selected patients according to these criteria.

Interviewees

In total, 10 out of 29 patients – 6 women and 4 men of 32–85 years of age (mean: 55 years) – accepted the invitation to participate in the study. They had lived in Norway for 6–40 years. Eight interviewees came from various parts of Asia and two from sub-Saharan African countries. Reasons for hospitalisation varied, for example, pneumonia and heart disease. The participants were interviewed 1–3 months after their most recent hospital stay, some at home and some at the hospital.

The interviews

The interviewees were asked how they found their hospital stay, including what they were happy with, what they were unhappy with and what could have been done to make their stay better. Professional interpreters assisted during four of the interviews. The electronically recorded interviews lasted 35–87 min (mean: 61 min). They were transcribed verbatim into 181 single-spaced pages of rich data. After 10 interviews, data saturation seemed to have been achieved. This judgement was supported during the analysis, as no new information was found in the later interviews compared with the earlier ones.

Literature searches

Literature searches were conducted using various electronic databases, such as Medline and CINAHL, and through ‘snowballing’ from related research papers. Search terms were ‘othering’, ‘trust’, ‘distrust’, ‘ethnic minority patients’ and ‘communication’ in various combinations in English and Scandinavian languages.

Data analysis

The interviews were analysed according to the hermeneutic tradition following Kvale and Brinkmann’s ¹⁶ three ‘analytic contexts’ or levels: What is this interviewee saying? How do I understand what is being said? How may this be interpreted in light of theoretical knowledge? These levels often overlap during the analytic process.

Ethical considerations

The study was approved by a hospital Privacy Ombudsman for Research. All potential interviewees received an information letter. Professional interpreters telephoned those whose grasp of Norwegian was uncertain to explain the study’s aim and procedure. The patients were informed that participation was voluntary and that non-participation would have no detrimental effect on their standing with the hospital. The interviewees signed an informed consent form, and confidentiality was ensured throughout the study. Interview recordings were deleted after transcription, and the transcriptions were stored according to ethical research guidelines. ¹⁷

Assessment of healthcare professionals’ competence

Some of the interviewees preferred to be treated in Norway and would travel back there if they became ill while visiting abroad. Others felt that Norwegian physicians were not as competent as were physicians in their country of origin, and they expressed uncertainty, frustration and distrust. Several interviewees stated that the physicians in ‘the old country’ ‘are enormously experienced’ and much more knowledgeable than Norwegian ones. Three of the interviewees said they had gone back to their country of origin to receive healthcare or they had wanted to do so when they had been ill and the treatment they had received in Norway had no effect. One had been to both her general practitioner and the hospital, but her condition had not improved; she was now planning to see physicians ‘back home’. This interviewee stated that her fellow immigrants

feel that they neither are understood nor treated well enough for their illness. So they feel they must travel to their home country…and be treated there. And the treatment they have had to cope with for months or years in Norway, that treatment they receive in two to three weeks in their home country.

Understandings and misunderstandings

One of the Asian interviewees pointed out that the way a person expresses emotions and explains things is learned from childhood through listening to how older family members express themselves. He said that he was unable to express his innermost feelings and to make himself completely understood to a person with a different cultural background, however long they communicated, as ‘the feelings, they cannot be explained’.

An African woman added that feelings often are expressed in a different way in Africa than what is common in Norway, and this may create misunderstandings:

I know that quite a few Africans, when one does not understand something…one habitually cries out and ‘oaaaaa’ and so and so and so. And then people think, ‘Oh God, aggressive. This patient or this person is aggressive’. But it is only that the person does not understand.

Several of the interviewees mentioned hearing negative stories about treatment quality and discrimination in Norwegian hospitals. One had been told by friends that Norwegian hospitals were no good and that immigrants received no help. She herself ‘didn’t experience it like that. They helped me’. Other interviewees expressed surprise that they had had no negative experiences while in hospital. However, experiences varied. An older Asian woman described two healthcare workers who had treated her. One had explained everything carefully in a polite and friendly manner. Her perception of the other was that ‘I could see from his comportment, the way this person behaved, that he hates people like us’.

Another Asian patient had been met with kindness and encouragement by healthcare professionals in Norwegian hospitals but also with a kind of busyness that came across as rejection. She expressed the importance of healthcare professionals listening to her and ‘comforting, kind of, and say[ing] “Yes, all is well, it will be ok,” little encouragements like that…Because when you are poorly, a smile, a little pat on the back [means] quite a lot’.

Information-giving and communication styles

According to the interviewees, the information conveyed to patients was different from what they were used to back home, where physicians first and foremost informed the patients’ family. This is done because ‘they think that the patient is already ill and by talking about the problem directly that [person] maybe becomes even more ill from thinking about it’. Many of the interviewees had this experience, even though their countries of origin differed. In Norway, the informants found that ‘the entire system is the other way around’. Even so, most of the interviewees preferred to be informed directly. As one interviewee put it, ‘Head-on explanation is much better, and then, if he [the patient] wishes, he can explain [it] to the family’. A few interviewees said one should differentiate between giving direct information about non-fatal and fatal diagnoses, as according to them, knowledge of a fatal diagnosis may shorten one’s life. Generally, though, the sentiment seemed to be that providing candid and detailed information was a good thing, even when the information was distressing.

Preconceptions, othering and personal experiences

Distrust in the patient–healthcare professional relationship may cause an othering process in which the two parties see each other as the other instead of ‘one of us’. ¹ Othering is based on negative preconceptions where the other person or group is objectified. ¹² Attitudes such as stigmatisation, marginalisation and alienation ^1,13 may be difficult to change, but positive personal experiences may alter one’s preconceived negative ideas and create understanding and trust. An example of this is the two interviewees who, as a result of hearing negative stories, were surprised when they were not discriminated against while in hospital.

Johnson et al. ¹⁴ interviewed South Asian patients who ‘were surprised and relieved’ when they found that ‘they were not blatantly discriminated against’. This shows that discriminatory experiences find their way ‘back into the “general narrative”’. ¹⁹ Thus, both negative experiences and the ‘general narrative’ of discrimination and racism may make members of ethnic minority groups distrustful and hypersensitive concerning how they are treated, and this distrust may cause them to avoid available professional healthcare in the future. ²⁰ Feldmann et al. ¹⁹ stated that ‘the trust-building process is not only based on the chain of personal experiences, but also on stories heard from others’.

Through the othering process, ‘one magnifies and enforces projections of apparent difference from oneself’. ¹⁴ Research has shown that such processes may create conscious or unconscious bias against patients with a different background than the healthcare workers treating them; this may contribute to disparities in healthcare. ²¹ Othering is a two-way phenomenon where distrust may lead to othering, and othering may lead to distrust. Conversely, trust can be a gateway to counteracting the perception of the other party as other and hence plays an important role in stopping this vicious circle.

All the interviewees had heard negative stories about ethnically based discrimination by healthcare personnel in Norwegian hospitals. There is a tendency for stories about poor treatment and discrimination to circulate in immigrant communities, ^19,22 and one informant communicated that she had experienced what she perceived as racism while in hospital. Whether the healthcare professional in question truly treated this patient in a discriminatory manner is not important here. What is important is that healthcare professionals’ comportment combined with patients’ possible inability to understand what is going on around them in a foreign context may produce feelings of being overlooked, vulnerable and surrounded by non-caring and even racist people; this is particularly likely if such perceptions fit the patients’ preconceptions.

However, discrimination in healthcare settings does happen, and it is part of the discrimination that goes on in society at large. This may have a negative influence on both diagnosis and treatment, ²¹ and Ramsden ²³ therefore focussed on discrimination and the power imbalances between healthcare professionals and ethnic minority patients. Healthcare providers, like other people, may not recognise signs of prejudice in their own behaviour, ^21,24 a behaviour that is a form of othering.

Epistemic asymmetry and cultural differences

Persons who are ill and hospitalised entrust their body in healthcare professionals’ custody. ⁷ This leaves them vulnerable and dependent on the healthcare professionals doing their best to meet their various needs. ³ Grimen ⁷ points out that ‘[t]rust has a transactional side.… This transactional side of trust is important in interaction with professionals’ and includes communication as well as comportment.

Behaviours experienced as discrimination may, for instance, lead to distrust and othering – in this study evidenced in a patient’s perception of a healthcare professional not having her best interests at heart and behaving in a discriminatory fashion. Behaviours leading to othering may be interpreted as a way to maintain authority through epistemic asymmetry.

Not having one’s expectations met may also create distrust. In many parts of the world, patients are used to receiving a diagnosis, prognosis and treatment during their first visit to a physician. ^19,25,26 Many of the interviewees found it frustrating when tests and treatment commencement took longer in Norway than in hospitals ‘back home’. This may give the impression that the healthcare received is ineffective and indecisive, which may create distrust in healthcare professionals’ competence. ²⁵ Some of the interviewees’ perceptions of the physicians ‘back home’ as more experienced seem to accentuate this distrust. This may lead patients to view Norwegian physicians as different from what is expected – an attitude that may result in othering.

Western versus traditional asymmetric communication

In healthcare professionals’ various codes of ethics, the importance of information giving and honesty are stressed. ²⁷ However, to be informed directly and candidly was something the interviewees were not used to in their home countries. Hence, expectations concerning information giving may differ between majority healthcare professionals and ethnic minority patients. In many traditional or collectivistic societies, healthcare personnel are expected to inform patients’ family rather than the patients themselves about serious diagnoses. ^25,28,29 An epistemic asymmetric power relationship between healthcare personnel and patients may therefore be consciously or unconsciously expected.

The interviewees seemed to be somewhat torn between this traditional practice and the Norwegian patient-focussed information policy. Providing information in a direct and forthright fashion reduces the asymmetric relationship between healthcare professionals and patients. The interviewees expressed that being provided with information set them up as important actors in their own lives. Although some interviewees stated that one should differentiate between giving information about non-fatal and fatal diagnoses, the general sentiment seemed to be that candid and detailed information are better, even when distressing. However, being given distressing information ‘straight’ may be something that the patient is socio-culturally unprepared for; it may therefore create a feeling of being overwhelmed, disrespected and alienated.

The belief that knowledge of a fatal diagnosis may shorten a patient’s life is common in many societies ^29,30 and that the patient therefore should be shielded from such distressing information. ^29,31 A preference for direct information may thus bear witness to how well integrated into Norwegian society the interviewees have become. A Swedish study showed that ‘there is a strong relation between a successful migration process and being active in one’s own health care’. ³²

Being asked questions may also take some time getting used to for ethnic minority patients. Such patients may be surprised, even shocked, when a physician asks what they think about their situation. ¹⁸ These questions may cause immigrant patients to perceive a physician as lacking in competence and experience. This indicates that those expecting an epistemic asymmetry in the patient–healthcare professional relationship find this asymmetry reassuring and trust inducing. However, some interviewees preferred the Norwegian healthcare professionals’ more egalitarian demeanour. Their preconceptions had changed through personal experiences with the Norwegian healthcare system. Hence, patients who are used to physicians as strong authority figures may learn to appreciate being treated with a more egalitarian attitude as it communicates, ‘that one is being taken seriously’. This ‘breeds trust in a doctor who listens to you, takes time with you, carries out a physical examination, and gives a good explanation’. ¹⁹

Healthcare professionals may find minority ethnic patients who display reactions other than what they are used to difficult to care for. According to Canales, ¹³ ‘[t]heir otherness is signified by their relational differences; when compared to the “ordinary” and “natural” attributes of persons perceived as socially acceptable, they appear “different”’. At times, healthcare personnel also find some patients lacking in respect. ^24,33 Hence, othering and distrust may develop in both healthcare professionals and patients and create problems which may be difficult to overcome. To reduce these problems, it is important to attempt to imagine ‘the world from the Other’s perspective’ ¹ and to focus on ‘individual and group attributes rather than prejudice and stereotypes’. ¹³

Verbal and non-verbal modes of expression

The inability to express thoughts and feelings is a universal problem when communicating inter-culturally and/or in a foreign language. ^34,35 Both verbal and non-verbal communication may cause misunderstandings, resulting in distrust. An Asian interviewee, for instance, described difficulty in expressing emotions to a person with a different cultural background than his own, while an African woman described reactions and expression of feelings among Africans that may cause misunderstanding and/or a lack of understanding. Both situations may serve as a gateway to uncertainty and distrust. The African woman claimed that Africans who find themselves unable to express their thoughts and feelings may come across as aggressive. This may in turn create an othering process in the healthcare professionals.

One of the interviewees commented that her upbringing had taught her not to look a person of authority in the eye. In some cultures, looking a person of authority in the eye may be perceived as impolite or even a challenge; one is supposed to look down when addressed. According to Narayanasamy, ³⁶ ‘traditional Asians typically consider direct eye contact inappropriate and disrespectful’. The interviewee who brought this subject up was a Christian, but in research focussing on Muslims, it is also described that patients, especially women, try to avoid eye contact because of cultural norms of modesty. ³⁷ Downcast eyes may cause Western healthcare providers to perceive patients as subjugated, uninterested or unable to understand what is being said. For Norwegians, this may be confusing; moreover, they may become uncomfortable when people avoid eye contact. If they read this behaviour as displaying a negative attitude, they may even shy away from these patients. Such misunderstandings may easily lead to othering of the patient, when, as pointed out by one of the African interviewees, ‘she really is acting [politely]’.

The considerations mentioned above illustrate why healthcare personnel need to realise that verbal, and to a great extent non-verbal, actions are culture specific and may signify something very different than one first imagines. Hence, teaching healthcare personnel cultural competency is highly recommended in the research literature. ³⁸ However, this may not solve problems such as the possible negative impact of a lack of eye contact on patient–healthcare provider communication, as reactions to non-verbal actions tend to be particularly unconscious and deeply ingrained.

Internalised sick roles combined with ingrained cultural norms of politeness may cause ethnic minority patients to abstain from asking questions, as described by one of the interviewees. Contextual power may also influence whether patients are comfortable asking questions. In some cultures, patients who are undemanding and do not ask many questions are given better healthcare. ³⁹ In contrast, Western healthcare professionals are generally more responsive to actively involved patients. ⁴⁰ Because of this, one of the interviewees expressed worry concerning ‘quiet patients, those who do not say anything. Those who…say “yes” without understanding…because it is polite’. When this occurs, both parties may feel uncertain as neither the healthcare professionals’ nor the patient’s expectations are met. Uncertainty and even distrust may develop as both parties find that the other person is different from ‘us’.

Critical comments/limitations

The results of 10 qualitative interviews cannot be generalised. However, the study’s credibility is strengthened through the interviewees’ self-understanding and knowledge being presented in their own ‘voice’. This is also done to, as far as possible, avoid bias, together with using other studies within the field in the discussion of my findings. Both Asian and African interviewees were included as research shows that patients with minority backgrounds face many common challenges despite their different origins. ⁴¹

There is always a danger of meaning being changed or lost in translation. Therefore, an interpreter was used in the four interviewees where this was needed. In the six interviews where interpreters were not used, the content might have been richer and more detailed if the interviewees had spoken in their native tongue. However, they all were able to communicate their meanings clearly in Norwegian.