Scandinavian Journal of Public Health, 2011; 39: 319–325
ORIGINAL ARTICLE
Experiences of the Swedish healthcare system: An interview study with refugees in need of long-term health care ˚ KE BJO ¨ RN1,2 & SUSAN WILHELMSSON3 MONIREH FARSI RAZAVI1,2, LARS FALK3,4, A 1
The International Medical Program, Linko¨ping, Sweden, 2Centre for Teaching & Research in Disaster Medicine and Traumatology (KMC), Linko¨ping, Sweden, 3The Research and Development (R&D) Unit of Local Health Care, County ¨ stergo¨tland, Sweden, and 4Department of Dermatology and Venereology, County Council of O ¨ stergo¨tland, Council of O Linko¨ping University, Sweden
Abstract Background: Refugees needing long-term health care must adapt to new healthcare systems. The aim of this study was to examine the viewpoints of nine refugees in a county in Sweden, with a known chronic disease or functional impairment requiring long-term medical care, on their contacts with care providers regarding treatment and personal needs. Methods: Semi-structured interviews with nine individuals and/or their next of kin. Inductive content analysis was used to identify experiences. Results: ‘‘Care organisations/resources’’ and ‘‘professional competence’’ were the categories extracted. Participants felt cared for due to accessibility to and regular appointments with the same care provider. Visiting different clinics contributed to a negative experience and lack of trust. The staff’s interest in participants’ lives and health contributed to a sense of professionalism. Most participants said the problems experienced were not related to their backgrounds as refugees. Many patients did not fully understand which clinic they were attending or the purpose of the care that the specific clinic provided. Some lacked knowledge of their disease. Conclusions: Health care was perceived as equal to other Swedish citizens and problems experienced were not explained by refugee backgrounds. Lack of information from care providers and being sent to various levels of care created feelings of a lack of overall medical responsibility.
Key Words: Attitudes, content analysis, cross-cultural comparison, cultural diversity, health knowledge, physician–patient relations, practice
Background The migration process includes many changes affecting an individual’s mental and physical condition, also known as ‘‘migration-related stress’’ [1,2]. Forced relocation and uprooting requires extensive adjustment and may endanger health due to family and social disruption [3]. Negative health consequences are especially high when relocation is due to severe conflicts and associated with violence and trauma [2]. A study by Pavlish et al. showed that Somali female refugees in the USA did not trust Western health care and felt that care
providers lacked understanding of Somali women’s situation [4]. Since the 1970s, immigration has increased in Sweden as well as in many other European countries, and immigration is now the main source of increasing numbers of Swedish citizens. In 2006, 86,436 people were granted residence permits in Sweden, of which 25,096 were for protection or humanitarian reasons [5]. The definition of a refugee in this context is someone who has received a permanent residence permit by the Swedish Migration Board due to the need for protection according to the Geneva Convention or for humanitarian reasons or is a
Correspondence: Monireh Farsi Razavi, Internationella medicinska programmet – IMP, Brigadgatan 22, SE-581 85 Linko¨ping, Sweden. E-mail:
[email protected] (Accepted 15 January 2011) ß 2011 the Nordic Societies of Public Health DOI: 10.1177/1403494811399655
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family member from the nuclear family reunited in Sweden to such a person. Municipalities receive initial compensation from the Swedish Migration Board to cover standard costs for immigrants during their first 2 years after they have received permanent residence permits in Sweden [6,7]. Refugees with permanent residence permits and Swedish citizens have equal rights to health care. To facilitate planning of available healthcare resources, municipalities and counties are, apart from the initial compensation to municipalities, entitled to government reimbursement for healthcare costs for refugees in need of long-term medical care under specific conditions [6]. Criteria to be fulfilled for municipalities to receive reimbursement are: (1) the chronic disease or disability existed prior to receiving a residence permit in Sweden. (2) a need for care estimated to last more than 3 years. (3) costs exceeding 60,000 SEK (approximately E6000) in a 12-month period.
Reimbursement possibilities for the counties and municipalities expire if the first application for reimbursement is not sent to the Swedish Migration Board within 3 years after being granted a residence permit and always when receiving Swedish citizenship [6]. Experiences of the Swedish healthcare system among refugees fulfilling the above criteria have not, to our knowledge, been previously studied. We were interested in studying these people because of their predicament both as refugees and having severe diseases or disabilities. They had experienced health care as patients in their native countries as well as in Sweden. The reimbursement system offered an opportunity to identify this group of patients. The aim of the study was to explore the viewpoints of the first identified group of refugees with a known chronic disease or functional impairment in need of long-term medical care in the County of ¨ stergo¨tland, concerning their current frequent O contacts with healthcare providers in regard to treatment and personal needs.
¨ stergo¨tland and for coordinating applications to the O Swedish Migration Board. A centralised organisation to identify refugees that were high consumers of specialised health care was established in the county. The identification process was started in the municipality of Linko¨ping, where IMP is located, for geographical and practical reasons. To locate patients eligible for this study the Care ¨ stergo¨tland (CDWO ¨ ) was used. Data Warehouse in O ¨ is a healthcare register for all inhabitants The CDWO ¨ stergo¨tland run by the of the county of O ¨ stergo¨tland County Council. Individuals have a O ¨. unique identification number within the CDWO When attending the healthcare system all diagnoses, visits and costs are recorded. In 2001, data from various administrative registers were integrated into ¨ . Hence, it is a relational database and a the CDWO reliable tool for finding those exceeding annual healthcare costs of 60,000 SEK [8]. Through the ¨ , it is possible to establish the medical care CDWO patients receive, the care units involved, and the treatment costs. ¨ and case books kept by the IMP, Using the CDWO 21 persons, registered in Linko¨ping municipality in January 2007 and meeting the criteria according to current legislation enforced, were identified. An introductory information letter was sent to these persons. Written consent was then returned by those accepting participation. Of the 21 persons identified, one was deceased and two had moved to another county. One man, who had accepted participation, underwent emergency kidney transplantation at the time of the interview. Severe mental disorder (dementia and psychosis) made it impossible to enrol two persons. Four others declined participation without explanation. Two did not respond to the letter and could not be reached. Accordingly, nine persons participated in the study: five women and four men (Table I). The first author (MFR) made appointments for interviews. Participants were asked whether they required an interpreter.
Data collection Methods Participants ¨ stergo¨tland decided to In 2005, the County of O organise applications for government reimbursement of healthcare costs for refugees in a structured way. The International Medical Program (IMP) at Linko¨ping University Hospital was given the responsibility to identify individuals fulfilling the criteria in
The study had a qualitative descriptive design [9]. Data collection was achieved by semi-structured interviews consisting mainly of open-ended questions. The questions covered contextual issues such as anamnesis, rehabilitation participation at the time of the interview, how often they were in contact with the healthcare system, and their experience of received care. All interviews were performed by the first author (MFR).
Experiences of the Swedish healthcare system: An interview study with refugees in need of long-term health care
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Table I. Age, gender, diagnosis and number of persons interviewed.
Age (years)
Sex
Number of interviewsa
Disease or disability necessitating health care
Present
17
Female
Postoperative paraplegia
2
Interview 1: patient, mother, interpreter Interview 2: mother, interpreter
49
Male
Functional disability/impairment, diabetes mellitus
1
Patient, interpreter
17
Male
Epilepsy
2
Interview 1: mother, brother, interpreter Interview 2: mother, interpreter
12
Female
Blue rubber bleb venous malformation
1
Mother, patient, interpreter
34
Female
Malignant lymphoma, cerebral paresis
2
Interview 1: patient, mother Interview 2: patient
18
Male
Epilepsy
2
Interview 1: patient, mother, interpreter Interview 2: father, interpreter
25
Male
Cerebral paresis
1
Mother
39
Female
Liver transplantation (hepatitis C)
2
Interview 1: patient, interpreter Interview 2: patient, interpreter
42
Female
Mental retardation
2
Interview 1: patient, mother, father, interpreter Interview 2: father, brother, interpreter
a
On six occasions, a second interview took place because information was missing after the first interview.
Three participants were minors, thus parents were present during the interviews. Three participants could not be interviewed because of their current state of health and a parent or other relative was interviewed instead. A second interview had to be conducted with six participants because of insufficient information. Seven participants needed an interpreter. Two chose not to use an interpreter at the first interview, but apparent linguistic limitations called for an interpreter’s presence at the second interview to avoid misunderstandings. Each interview lasted approximately 45–60 minutes. Participants were interviewed face-to-face in their homes or at the IMP in 2007. Interviews were conducted in Swedish. All interviews were digitally taped and transcribed line by line.
Analysis Data was analysed using inductive content analysis [10]. Content analysis is a method of analysing written or verbal communication in a systematic way [11]. The method is useful in the analysis, for example, of personal experiences [12]. Content analysis implies dimensions of interpretation from manifest/description to latent/interpreting, depending on purpose, quality, and extent of the analysed data [13,14]. In this study, answers from participants were suitable for latent analysis. The entire text was read to obtain an overview and capture essential features. The text was then re-read several times and meaning units were condensed; units on the same
topic were then gathered and coded. Codes with a similar content were grouped into categories and subcategories were formulated. There were 11 codes initially. Transcripts were then re-read and discussed with the second and fourth authors (LF and SW) until reaching agreement on the codes, categories, ˚ B) had proand subcategories. The third author (A fessional relationships with some participants and did not participate in the analysis to avoid bias and possible conflicting interests. To ensure accuracy we chose to work towards a negotiated consensus analysis [15]. All background data, such as history of disease, care facilities involved, occupation, and family structure was obtained from two sources: patient casebooks and interviews with participants. Ethical considerations Oral and written information was provided concerning the aim of the study, confidentiality, and voluntary participation and the consent form from the Regional Medical Ethic Committee in Linko¨ping (M106/07) and the Data Inspectorate. Information was provided in Swedish and an interpreter was used when necessary.
Findings Participants were from Burundi, Colombia, Iraq, Kazakhstan, Poland, Kosovo, and Syria. Their median duration in Sweden was 7 years
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(range 3–23 years). They were aged from 12 to 49 years. There was a variety of diagnoses and experiences of health care from their countries of origin (Table I). All participants were in contact with the Swedish healthcare system and some were in contact with social services, such as personal assistance and transportation services for the disabled. Content analysis resulted in two categories (care organisations/resources and professional competence) and six subcategories (Table II). Examples are cited for each subcategory. Care organisations/resources Within this category, three subcategories were identified: continuity, level of care, and options of care facilities. Continuity included, aside from meeting with the same healthcare provider, experiences of accessibility, i.e. reaching the physician, nurse, or paramedic. Regular visits were seen as positive and interpreted as ‘‘a sign’’ that the care provider was concerned about both their health and situation in general: ‘‘They care in that when he hasn’t had an appointment in a long while, he is given one and everyone cares, and asks questions and is involved, so that I feel they care not only about A [the patient] but also about S [A’s brother].’’ Several participants appreciated having the same physician or other care provider. Focus was thus kept to the present visit without needing to reorientate: ‘‘If I were to have only one physician, that physician would know more about me than, for example, a doctor who I would be telling everything to once again, which I feel is very bothersome. And furthermore, I don’t think they hardly care.’’ Most participants attended a variety of clinics, mostly primary healthcare centres, before the diagnosis was finally established and treatment commenced. Being sent to various levels of care and the feeling that no care provider took overall responsibility affected the patient’s experience and trust negatively: ‘‘Every time we attended the emergency department they told us this was outside their field and we had to see a specialist. We were referred from one
Table II. Categories and subcategories from the content analysis. Category
Subcategory
Care organisations/resources
Continuity Level of care Options of care facilities
Professional competence
Treatment Access to information Skilful care provider
department to another, but no one wanted to take the responsibility of A’s [the patient’s] problem.’’ A major problem for some participants was the abrupt cessation of organised treatment at 18 years of age when, according to the county’s healthcare structure, they could no longer attend the habilitation training centre for children. At the habilitation centre, they had received assisted training by a multiprofessional team. The training programme was tailored to individual needs. Because of the lack of habilitation training centres for adults, they had no other option than to be referred to a primary healthcare centre: ‘‘Then there was, of course, downsizing; rehabilitation shrank and shrank and you had to fight for every technical aid and so forth, but then it was tragic when you were discharged from [child] habilitation, winding up nowhere . . . and then delegated to the open care unit with all your complex needs, which is completely unrealistic. To go to the open care unit with such complex problems . . . Doctors in primary health care are almost frightened when they see multihandicapped people.’’ Professional competence Within this category, three subcategories were identified: treatment, access to information, and skilful care providers. The healthcare provider’s interest in the participant’s life, for example, a short conversation about daily life, was seen as a sign of commitment, knowledge, and skill. On the other hand, routine medical examinations without commitment were viewed as professional incompetence: ‘‘If I were to meet the head physician, he would be sure to ask me about my diagnosis. I would then be so pleased that he cares and listens . . . but if my doctor just examines my heart, writes a prescription, and nothing more . . . then I think they’re incompetent.’’ Most participants believed the professional interest and commitment of their health care to be equal to the health care given to other Swedish patients. They did not perceive that medical treatment was affected by their immigrant background: ‘‘I feel that I’m treated exactly the same as a Swede, since we all have to queue up and take a number. That’s very good.’’ Some participants lacked access to information resulting in insufficient knowledge of their disease and treatment strategy. The patient or family expressed poor understanding of the diagnosis and why a specific category of care provider should be attended. This resulted in a discrepancy between expectations and care received. Coming to a new country with a different healthcare system made the patient and family feel unsure about how to behave and what was expected of them: ‘‘No one has explained what’s wrong, that is, what the
Experiences of the Swedish healthcare system: An interview study with refugees in need of long-term health care diagnosis is, or what the problem is . . . we meet healthcare people but so far no one has told us anything.’’ Some patients and their relatives had adopted a more egalitarian Swedish perspective, in the sense of having learned how the Swedish care system works, and were more aware of their rights and demanded better services: ‘‘I knew absolutely nothing. It was difficult for me, I didn’t know much, and felt stressed and sad . . . I knew nothing then. But now I can, I have learned so much and I ask and ask.’’ Doubts were expressed about the physician’s competence if they had to look in books or papers, or if they had to consult a colleague during the consultation. Some interviewed participants perceived in such situations that doctors were unsure about their skills or which medicine to prescribe: ‘‘I mean no one else has their knowledge and still they have to look in their text books to check whether they are right or wrong. I think they should know without having to look things up. There’s something missing here [points at his head]. They need a book to follow besides having all the facts. I have been prescribed three different pills on four occasions . . . and on the fourth occasion I said I didn’t want to test another new pill. Am I a guinea pig?’’
Discussion Being a refugee with severe health problems at the beginning of a new life in Sweden places them in a position requiring rapid adaptation and adjustment to a new healthcare system. Analysis of the material in this study suggests several positive and negative factors in the contact with healthcare providers in Sweden. The study sheds light on how participants experienced contact with healthcare providers. The group varied concerning age, diagnosis, and country of origin. Due to the inclusion criteria, participants had varied experiences of healthcare systems prior to their arrival in Sweden. This may have played a role in how satisfied or dissatisfied they were with the Swedish healthcare system. Lack of information and being sent to various levels of care with no one taking overall responsibility were the main problems identified. In the study by Pavlish et al., participants experienced considerable differences in views on health and disease within the healthcare systems of Somalia and the USA resulting in dissatisfaction and distrust [4]. Similar opinions were expressed in the present study. The structure of the Swedish healthcare system focuses on disease and treatment and each visit was limited in time, which led to frustration and feelings of shortcomings in a holistic sense. Participants in this study felt it important that care providers showed interest in their lives and not just
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their diseases. This finding was not surprising and has been described in other contexts where ignorance of social situations and prejudgements from care providers caused disparities in health care [16]. This latter consequence was, however, not expressed in the present study. Most participants believed the professional interest and commitment of their health care to be equal to the health care given to other Swedish patients, and problems experienced in the contact with healthcare providers were thus not expressed as a result of their refugee backgrounds. The study confirmed that patients tended to have higher overall satisfaction with health care when given regular appointments with the same physician, also shown in other studies [17,18]. Being referred to different clinics or care providers before the diagnosis was established was considered a negative experience. Lacking clarity about the diagnosis or which department or clinic they belonged to created confusion and irritation among participants. The level of satisfaction has been shown to increase with feelings of being well managed and of obtaining good-quality health care [19,20]. Some participants could not access information because they were unfamiliar with the structure of the Swedish healthcare system. Lacking linguistic skills and difficulties in communicating with care providers, for example regarding information about their diseases and involvement in treatment, caused frustration. These observations have been described by others [21,22]. Even if an interpreter was available, some participants did not know what questions to ask. In a US study of Chinese and Vietnamese patients living in the USA it was shown that using an interpreter could even exacerbate disparities in patients’ perceptions of their providers, despite receiving more information compared to those without an interpreter. An interpreter could not substitute a language-concordant provider [23]. Hansson in a PhD thesis, as in our study, showed that patients who had adopted a more egalitarian Scandinavian perspective were more aware of their rights and demanded better services [24]. In a Norwegian study, it was suggested that people from Asia, being more collectively oriented, would passively await care and cure in their roles as patients or by presenting themselves as passive partners in the health encounter [25]. In another study by Fagerli et al., some participants who were integrated in Norwegian society also became involved in their own care and consequently knew how to cooperate for better care and health and thus became more satisfied [26]. The purpose of habilitation centres is to maintain and to some extent improve functionality of patients,
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when rehabilitation, i.e. recovery to total health or a ‘‘normal’’ life, is impossible due to non-curable diseases or irreversible injuries. The lack of habilitation centres for adults creates problems for patients with multiple disabilities. Health care, as organised during the time of the study in the county of ¨ stergo¨tland, did not meet patients’ expectations O in this respect. These patients required treatment that could not always be provided by general practitioners. The study group consisted of the first identified refugees in a specific county living in a specific community who fulfilled the criteria for reimbursement from the state according to legislation. After development of accurate identification methods within the healthcare structure in other major munic¨ stergo¨tland and identifiipalities in the county of O cation of all newly arrived refugees with a chronic medical condition within the time limit of 3 years, the number of individuals identified in 2010 increased to 150 persons, indicating that there were undetected individuals for which the county was theoretically eligible for government reimbursement at the onset of the present study. Whether the conclusions in this study of the first identified individuals in this specific community applies to most refugees in Sweden, those in need of long-term continuous care in Sweden, or only to this selected group of nine individuals in need of continuous care needs to be further investigated. The content analysis method was used in this study. A possible limitation is that narrative understanding in interviews, such as in the present study, can be oversimplified, as the method involves breaking down and reporting part of the interview transcript. Another limitation is the lack of linguistic skills and how interviews might be affected by an interpreter. In this study, participants informed the first author about the necessity of an interpreter. In two cases without interpreters in the first interview, communication was poor because of lack of nuances in the language and hence the interview needed repeating with an interpreter. There were also difficulties regarding expectations from some participants or their relatives about the aim of the study. Some answers were therefore not as open as they could have been. Therefore a second interview was performed with an interpreter present, which enriched the information obtained and subsequently improving the data for content analysis. The diversity regarding diseases and disabilities, age, and country of origin reflects reality and strengthens the study since many aspects of their opinions could be revealed.
Conclusions Participants were to a great extent pleased with treatment received in the host country. Appointed visits on a regular basis and continuity with the same care provider were interpreted as signs that the care provider was actively interested in the patient’s health. Short conversations about daily life were seen as a sign of commitment, knowledge, and professional skill. The main problems were related to feelings of being uninformed, being sent to various levels of care resulting in lack of trust, and feelings that no one took overall responsibility. No participants in the present study expressed xenophobia as an explanation of problems experienced in the Swedish healthcare system.
Acknowledgement The authors wish to thank the participants for their cooperation.
Funding This study was supported by The International ¨ stergo¨tland, Medical Program, County Council of O Centre for Teaching & Research in Disaster Medicine and Traumatology, Linko¨ping University, Sweden.
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