This study, based on interviews with a variety of caregivers and participant observation, has illuminated the tensions in caring for migrant patients who despite entering a new health care system, still make reference and are guided by the backgrounds and systems which have shaped their view of health and disease, their health seeking behaviors and their expectations from health care providers. In this way, the study is about the complex interaction of contextual factors in the old and the new health care systems or the environments described in the socio-ecological model. The caregivers have described the multiple factors contributing to the challenges they face in caring for migrant populations in Sweden as stemming from language difficulties; socio-cultural diversity and migrants’ difficulties to navigate a new health care system due especially to limited information, use of technology and a care approach that expects patients to participate actively in their care. From a socio-ecological model these factors appear at different levels of the system including at the individual, the interpersonal, institutional and macro-societal levels and as indicated influence health-seeking behavior, the provision of care and the interactions between migrants and caregivers. These findings echo those of others who have reported that migrant health care is the result of dynamic interactions of many factors including individual and societal characteristics [14, 18, 42, 43].
The heterogeneity of migrant populations, comprising of people of varied social, cultural, religious and geographical backgrounds with different experiences was said to affect care delivery and use in ways highlighted in other studies [6, 14, 16, 17]. Moreover, educational, religious and ethnic backgrounds, migration history and status, lifestyles, health and socioeconomic status are issues that come into play even when patients may come from one country and that caregivers need to consider in their delivery of care [14–17, 19]. For instance, participants in this study described being challenged by low educated and very religious patients. Education was said to affect health literacy while religious beliefs interfered with care. Furthermore, some migrants, in particular women refused to be treated/seen by providers of opposite sex. However, two female participants explained they had never found it difficult to care for male patients. It could be discussed whether the fact that men are rule makers in more patriarchal structures make it easy for them to break the rule and meet female caregivers or whether old age is, as stressed by a caregiver in this study an advantage. Some researchers have therefore urged providers to be aware that every patient is an unique individual [6, 7, 9, 13, 44, 45]. Meanwhile others warned about intergenerational and inter-ethnic variations within migrant groups [10, 13, 15]. The question is whether and how care providers can pay attention to the total context of the patient’s situation including their immigration status, literacy level, gender, family dynamics, religious beliefs and stress factors while providing care or they just apply ‘one-size-fits all approach’ while providing care.
Additionally, our findings suggest that the difference in social and cultural backgrounds between migrants and caregivers also challenges medical encounter and threaten acceptability and quality of care [6, 11, 13, 16, 17, 45, 46]. Participants in this study reported stereotypes and discriminatory attitudes among care providers that could perpetuate mistrust and generate dissatisfaction that could undermine the trust and cooperation necessary for a successful therapeutic relationship [6, 8, 11, 13, 44, 47]. According to Ahlberg et al., migrants often experience tensions living in two worlds and negotiating their existence, within contexts and discourses promoting stereotypical representations, discrimination and marginalization . For instance, Cuadra stressed in her report that the Swedish label ‘Invandrare’ (immigrant) itself is associated with other connotations than just being a social or administrative categorization of foreign born persons. She indicated that the term is criticized for the loaded meanings which focus on differences, and emphasize the ‘other’ (non-Swedish) in relation to modernity and a presumed homogenous Swedish culture . Prejudiced assumptions by care providers may result in the limitation of services to migrants, poor access and acceptability . Here the question is: what kind of knowledge do caregivers possess about migrants’ backgrounds and how do they get such knowledge.
Nevertheless, the most obvious challenge mentioned is language which prevents effective communication and creates frustrations for caregivers and patients with consequences for access, acceptability and quality of care as also described in other research [6, 8, 10, 11, 14, 18, 19, 26, 43, 45]. Literature indicates that healthcare in general rely on dialogue. Language thus becomes the primary barrier at the interpersonal level leading to longer consultations and misunderstandings with increased risk for wrong diagnosis, inappropriate treatment and non-compliance [8, 11, 12, 14–19, 26, 43, 49]. Participants in this study expressed the difficulty for interpreters to translate medical terms correctly during care encounters, which has the potential risk of misleading both the patient and the caregiver. A recent survey showed that over 30 languages were used in a Swedish language school in Northern Sweden illustrating the growing diversity and challenges for care encounters [36, 37]. Our study also suggests the societal and institutional influences in terms of policies and practices within the health care system. For instance, the Swedish policy of providing care, health information and hotline services in Swedish hinder access to and effective use of health information and services as well as the interaction between care providers and patients who cannot properly communicate or understand Swedish. This is particularly critical for individuals with low literacy skills, [6, 8, 10, 11, 19, 26, 37]. Fatahi et al. argued that the inclination among some migrant patients to prefer their mother tongue during medical encounters could also be in part due to the Swedish policy of offering language assistance [19, 25]. However, our observations indicate that language is a substantial barrier to communication in cross-cultural encounters [6, 10, 26]. While some migrants might speak Swedish or English in their everyday life, it may be insufficient to read letters and leaflets or to understand medical jargon especially during medical encounters [14–16, 37]. We observed a number of problems related to the use of interpreters including unprofessional conduct, inaccurate translations, patient discomfort, gender norms, medical confidentiality and use of relatives or friends for sensitive situations. For instance, the dual role of interpreters as both community members and professionals threaten confidentiality and negatively impacts on health care seeking behavior and care encounter. Similar challenges have been discussed in other studies in and outside Sweden [6, 8, 10, 11, 13, 15, 16, 18, 19, 26, 43, 47, 49]. Additionally, some studies emphasized issues of access to interpreters who are not integrated within the health care system, shortage of interpreters for particular languages as well as government pressures to economize as making the use of interpreters problematic [6, 10, 26]. The question is how issues related to language barrier and the use of interpreters should be addressed.
Apart from language, this study suggests that the use of distant communication technology (letters, telephone calls, e-mails, e-health information, and leaflets) at the institutional level also negatively affects access to available health services especially for migrants with low literacy skills. This has also been stressed by other authors [6, 14, 16, 37, 45]. Despite being modernized, the Swedish health care system may thus be inaccessible to migrants because patients are expected to communicate with caregivers via mail, web or phone. For example, the research participants in this study reported that migrants sought care as drop in patients because they were unable to use the booking system and this often resulted in conflicts as providers expected them to follow the rules and make prior appointments. In other cases, migrants were fined for not showing up as expected since; they could not call to cancel the appointment, even though an interpreter was already hired. The migrants’ unfamiliarity with the Swedish health care system and their inability to navigate through it is another illustration of challenges arising from institutional and societal influences. Migrants’ perceptions and expectations (required prescriptions, immediate care for non-emergency situations, and mistrust of nurses) about care and health care system were described to be rooted in their past experience in their home countries and this experience may be in contrast with the Swedish health care system and model of care. Furthermore, the Swedish model of care emphasizes patient autonomy through the patient-centered care approach in common use in most Western countries [12, 17, 20, 22, 45]. The assumption is that this model of care improves treatment choices, quality of care and outcomes through informed decision making. However, our findings indicate that involving migrants was difficult as migrants expected the doctor should know the diagnosis and should tell them what is best. Several authors argue too that the patient-centered approach may lead to significant ethical dilemmas and challenges because of misinterpretation arising from adhering to different explanatory models common in cross-cultural encounters [13, 17, 45, 46]. Moreover, “truth telling”, or the disclosure of terminal diagnosis or other bad news can be a dilemma as the participants in this study described experiencing difficulty to reveal directly to the patient scaring diagnosis in the face of family and gender dynamics where migrant men may feel entitled as the primary authorities to receiving medical information concerning members of their families. Some researchers stated that in some countries, doctors are likely to withhold upsetting information from patients who seemed to prefer this withholding or a common practice is to reveal potentially upsetting information gradually and cautiously [17, 44]. They, therefore, suggest that rather than communicating exclusively with a patient, health professionals should consider including a family spokesperson who is often regarded as able to cope with bad news and to determine whether or not to reveal the information to the patient and how best to do it [17, 44].
Participants in this study described facing difficulties in understanding and communicating things to patients who hold different explanatory models about clinical realities. According to some authors, both patients’ and doctors’ behaviors and explanations about clinical realities are culture-specific. Thus, most of the problems in cross-cultural encounters result from hidden discrepancies between their views of clinical reality [6, 13, 17, 46]. Kleiman et al. elucidated these discrepancies and argued that, clinicians within the Western medical paradigm often diagnose and treat diseases (malfunctioning of biological and psychophysiological processes in individuals) whereas patients suffer and seek help for illnesses (personal, interpersonal, and cultural reactions to disease or discomfort) . The research participant in this study explained too that concerns about symptoms rather than disease prompted migrants to seek care or comply with treatment and preventive rules. This maybe an indication of a mismatch between providers’ and patients’ explanatory models and expectations and could explain low awareness about health promotion initiatives, the delay in seeking timely care for serious/chronic conditions such as diabetes or over-utilization of care services for minor/acute ailments described in this study. Other authors have similarly observed this to be the case [11–13, 18, 43, 49]. Several authors have reported that these discrepancies lead to a sense of discrimination and dissatisfaction on the part of the patient and to frustration, misperceptions and prejudice against the patient on the part of the provider with negative consequences for the patient-provider relationship [11–14, 17, 18, 43, 44, 46]. Expansive literature reported that patients’ explanatory model of illness often arouse expectations about treatment and healing process that might differ from that of clinicians and as reported in this study could create problems for clinical management [11–13, 15, 17, 18, 43–46]. Failure to take account of diverse explanatory models and expectations may compromise care and clinical management of diseases, especially for chronic and asymptomatic diseases [13, 43, 45, 46]. Rather than contradicting patient’s explanatory model of clinical realities, providers should try to negotiate and find options that will be mutually acceptable to both and that incorporate patient’s beliefs, if necessary give clear clinical explanations or educate patients if their explanatory models are likely to interfere with appropriate/planned care.
Finally, our study illustrates that care providers face a number of challenges that have multiple layers manifested in language barrier, socio-cultural diversity and the difficulty for migrants to navigate the Swedish health care system. As stressed by Liburd & Sniezek, the synergistic relationship among the multiple and complex layers represented in the socio-ecological model make it difficult to identify any single component or factor embedded within the model as the driving factor . This calls for actions and policies that encompass all levels and that are interactive and two-sided. For instance, it is unrealistic to expect migrants to change behavior if caregivers do not change their own and if barriers at other levels are not addressed.
Study strengths and limitations
This study has strengths and weaknesses as is common in qualitative research. Ten informants from one area, all interviewed by a single investigator with migrant background, with a potential desire on respondents’ part to appear morally upright, potentially threaten the credibility and transferability of the study. Nevertheless, the findings of an ID inquiry are not a list of isolated themes, but a synthesis of the main themes and patterns of the phenomena that experts in the area will acknowledge as persuasive [31–33]. Moreover, during data collection and analysis, we relied on accepted principles of trustworthiness to allow the reader of the research report evaluate the relevance of data on which findings were based, the logic by which the conclusions were drawn, and the degree to which the interpretations reflect a coherent and grounded conclusion [32–35]. To enhance credibility, we used different kind of data sources to compensate for their shortcomings and exploit their benefits to understand and verify particular details that were provided. In addition, we used a wide range of participants and different settings so that we could check information across informants. All these provided triangulation, reduced investigator bias and contribute to the trustworthiness of generated findings [32, 34, 35]. Furthermore, the main investigator had debriefing sessions with other members of the research team (co-authors) who reviewed the interview guide, style and participated in the analysis process during the study itself. Information about the background, experience and qualifications of the main investigator has also been provided . Moreover, the findings were presented and discussed in seminars with other care providers caring for migrants in other parts of Sweden. To address dependability issues, we have reported the research design and its implementation in details and followed the operational details of data collection and analysis.
Although, purposive sampling does not confer transferability, it does, however, provide in-depth information from different individuals representing valuable perspectives, which also strengthen the findings. For instance, while doctors and nurses appeared to emphasize a more allopathic perspective, the social workers showed more empathy and understanding about migrants’ difficulty to adapt to the new environment, which emphasize the need for further exploration. In addition, public health officers described other aspects of the challenges that are uncommon in the clinical setting especially health promotion. However, the migrant doctor’s acculturation made him look at migrant patients with more “Swedish eyes”. Without offering firm assurances for transferability, we believe that most of our findings are of a more general nature and we do also note that they concur with previous studies on challenges in cross-cultural care encounters [6–8, 10, 12, 17, 18, 26, 45, 47, 49]. Although we can say that we have a rich description that could enable transferability, there is a need for caution when applying these findings to other cross-cultural care contexts due to differences in health care policies and migration context. Finally, although providers discussed perceived challenges for migrants, the findings do not represent the personal experiences, opinions or feelings of migrants. Nevertheless, this study is part of a research project on challenges and opportunities in HIV/AIDS and Tuberculosis care among migrants and is based on findings from a survey study with migrant students [36, 37]. Research on migrants’ and interpreters’ experiences with the health care system is planned as part of this project to better understand their needs and how to improve the delivery and receipt of care.