Background
Treatment-seeking refugees resettled in the West experience many stressors before their arrival at a host country [
1]. They are often exposed to multiple traumas before and during migration, and many also experience post-settlement difficulties such as language barriers, culture shock, and loss of social status and social networks [
2]. These stressors place refugees at high risk of developing different psychiatric disorders. In current research, the mental health issues experienced by traumatized refugees in the West are often interpreted in the light of a few psychiatric disorders, the most common being posttraumatic stress disorder (PTSD), depression, and anxiety [
3]. In clinical settings, a range of other problems are typically encountered, however, they are often difficult to document as there are only a few validated measures available for the assessment of this group [
4]. There are currently no validated or commonly applied measures for the combined load of biopsychosocial problems in traumatized refugees [
4]. Consequently, the present understanding of the complex conditions experienced by treatment seeking traumatized refugees resettled in the West is limited. Moreover, as refugees often seek treatment for trauma-related problems many years after having resettled in the West, most are rightly considered to be former refugees (with permanent residence or citizenship) by the time they encounter Western psychiatric systems. Thus, traumatized
former refugees constitute a subgroup of psychiatric patients in Western countries whose needs are generally poorly understood and poorly documented.
Psychiatric disability is often defined as the sum of impairments in the biological, psychological, and social areas of functioning [
5]. This type of global bio-psycho-social evaluation is inherent in most areas of Western psychiatric care. This is because the development of psychiatric disability is often related to different risk and protective factors than those related to the development of specific psychiatric symptoms. Also, recovery from psychiatric disability is usually known to lag behind that of symptoms of specific mental disorders [
6]. Hence, a systematic assessment of psychiatric disability in addition to the symptoms of specific mental disorders is important in guiding individual, as well as political decisions about treatment needs and prognosis in different groups of psychiatric patients.
To the best of our knowledge, there are currently no studies that describe the level of psychiatric disability in representative groups of traumatized refugees from Western clinics. One small study analyzed 50 Health of Nation Outcome Scales (HoNOS) case files from refugees and asylum seekers in London community psychiatry, and found that these service users had greatly elevated levels of psychiatric disability compared to users without refugee experiences [
7]. Documentation of psychiatric disability in traumatized refugees in larger groups with better representativity is needed to improve cooperation between specialized refugee clinics and other parts of the social and psychiatric systems, especially when it comes to the facilitation of a much needed mutual understanding of the overall severity of psychiatric symptoms and social problems in this treatment seeking population. In particular, a wider acknowledgement of the level of psychiatric disability in traumatized treatment seeking refugees in the West is important within systems that make decisions about the possibility of recovery and societal participation after treatment in specialized refugee clinics.
In the present study, the level of psychiatric disability in traumatized refugees from Danish specialized clinics is documented using routine Health of Nation Outcome Scales (HoNOS) monitoring data from pre- and post-treatment. Furthermore, in order to facilitate the understanding of the level of psychiatric disability beyond the walls of the specialized clinics for traumatized refugees, the HoNOS ratings are compared with routine monitoring data from Danish inpatients with different diagnoses. Specific problems experienced by traumatized refugees are highlighted on the HoNOS profile, and rates of improvement for each group are compared in order to aid understanding about disability and prognosis. Finally, perspectives on the practical use of the HoNOS in Western clinics for traumatized refugees are offered.
Discussion
The present findings indicate higher overall levels of psychiatric disability among resettled traumatized refugee outpatients compared to most psychiatric inpatients, who by definition are in the most acute phase of their psychiatric disorders. Thus, the clinician rated level of psychiatric disability in treatment seeking traumatized refugees is shown to correspond more closely to that of the severe psychiatric inpatients with schizophrenia, dementia, and addiction, and considerably less to that of inpatients with affective-, anxiety-, and personality disorders.
However, due to the present study design, which utilized routinely collected data, contextual factors in the treatment settings should be considered as potential contributors to the findings. Namely, in the present study, the traumatized refugee outpatients were compared to psychiatric inpatients. The best comparison to the traumatized refugees would have been outpatients with affective and/or anxiety disorders without refugee experiences, but HoNOS ratings were not available for these groups. In this case, large representative groups of inpatients encompassing a range of the most frequent psychiatric diagnoses (including those with affective and anxiety disorders) were used as a comparison.
There are arguments both for and against this approach. What speaks against this approach is that ratings for inpatients were made by psychiatric nurses and those for the traumatized refugees were made by psychologists. - These two groups of professionals occupy different roles in the treatment, and have different sources of information available for the rating of the HoNOS. - One can in general assume that in an inpatient setting, the ratings are on the whole more influenced by observations of behavior, while those in an outpatient setting are to a higher degree inferred through conversations about behavior. Thus, these two types of ratings are not necessarily the same. However, one can also argue that they do not have to be inherently different either. The psychiatric nurses are those professionals who spend the most time with the inpatients during their hospitalization. So, as in the case of the psychologists, their ratings are probably based on their overall knowledge of the patients, including their conversations with them, and other routine assessments, that they performed at the PCNZ.
What speaks in favor of the comparison between the traumatized refugee outpatients and psychiatric inpatients is the fact that HoNOS is made for purposes of comparing outcomes across different treatments [
12]. Prior studies had thus indicated that it is able to differentiate between inpatients and outpatients [
17], and that clinical psychologists in general do not tend to make systematic overratings on the HoNOS when compared to psychiatric nurses and doctors [
12]. Finally, very similar levels of disability on the HoNOS have been reported for asylum seekers and refugees within community treatment in London [
7]. Hence, the fact that similar severity levels on the HoNOS have been reported for traumatized refugees across outpatient treatments in different European countries makes it less probable that systematic overrating took place at CPTP.
In sum, the advantage of this study is that it presents representative data directly from the clinical practice, and documents the everyday disability evaluations of large patient groups (and especially those of the traumatized refugees). However, there is no way to directly test the possible influence of the inpatient vs. outpatient treatment in a retrospective, naturalistic design such as the present. Future studies documenting psychiatric disability in treatment seeking traumatized refugees on the HoNOS should therefore aim at including other outpatients as well.
If one accepts the proposition that traumatized refugees in Western outpatient treatment have very high levels of psychiatric disability, a number of characteristics associated with the refugee experience itself can help explain the findings. The average length of resettlement in Denmark and the time at which treatment was sought by traumatized refugees in this study was very long (M = 12 years). This may have contributed to the chronicity of symptoms of psychiatric illnesses among the traumatized refugees, and, consequently higher levels of social impairment. Moreover, the very high levels of disability found among traumatized refugee outpatients are probably also linked to the risk factors associated with the experience of being a refugee. Namely, individuals who, aside from having a psychiatric illness, also display severe problems with societal participation and social networks (i.e. have social impairment) are by definition considered to be disabled [
5]. In this respect, refugees are particularly vulnerable, because they are often exposed to additional social challenges associated with migration and various post-settlement difficulties. A 10-year follow-up study of tortured, treatment-seeking refugees found that post-settlement difficulties had a negative effect on psychiatric morbidity, and that this effect increased over time [
18]. Thus, given that refugees generally have few protective factors such as social support, employment, and societal inclusion, and that those who develop trauma-related psychiatric disorders tend to seek treatment at a late stage, the finding of very high levels of psychiatric disability in treatment seeking traumatized refugees is not so surprising.
With regards to the specific profile of disability on the HoNOS, the present findings indicate that the HoNOS scores obtained by the traumatized refugees are clearly discernible only from those obtained by the inpatients with schizophrenia, dementia, and addiction. Apart from this, refugee outpatients often received higher or equally high ratings on the core problem areas of other diagnostic groups. Importantly, the largest difference in total HoNOS severity ratings was observed between traumatized refugees and inpatients with anxiety disorders (ES = 1.31). Diagnostically speaking, most traumatized refugees are considered to belong to precisely this group given that they are often diagnosed with PTSD. However, the present results indicate that this may not be the most appropriate comparison. The HoNOS disability profile of the traumatized refugee outpatients is much more versatile, and the severity of disability is also much higher. This highly versatile disability profile highlights the need for a broader assessment of symptoms among traumatized refugees in general. Careful consideration needs to be taken regarding the choice of primary diagnosis and possible comorbid disorders. According to their present HoNOS profile, some of the more pertinent comorbidities in traumatized refugees may very well be cognitive problems and interpersonal problems (i.e. personality disorders), which are known to complicate treatment of PTSD [
19]. Epidemiological studies have indicated that personality disorders are a frequent comorbidity in individuals with PTSD and trauma [
20]. Therefore, the high level of interpersonal problems in the present group of refugees with chronic traumatization is not surprising. Finally, cognitive impairment in traumatized refugees can be related to a number of different causes, including sleep deprivation, long lasting PTSD, severe depression, dissociative disorders, mild traumatic brain injury (caused by blows to the head), and different combinations of these. These causes should ideally be carefully assessed and their impact on the ability to profit from treatment systematically evaluated.
Although there are, as yet, no appropriate diagnoses that capture the complex and chronic trauma adaptations among refugees, very broad problem profiles have been identified in the literature for individuals exposed to extreme traumatization - e.g. Disorders of Extreme Stress Not Otherwise Specified (DESNOS) [
21] and Enduring Personality Change after Catastrophic Experience (F62.0) [
10]. However, these problem profiles do not work well as diagnostic entities [
22]. Moreover, there is no obvious treatment of choice for broad, complex trauma adaptations among refugees, and the prognosis is unknown.
Differences in the rates of improvement on the HoNOS
While pre- to post-treatment change on the HoNOS was registered for the traumatized refugees, the rate of improvement was much smaller and more uneven compared to that of psychiatric inpatients. First, the disparities in the improvement rates between traumatized refugees and inpatients can be attributed to the acute- rather than the chronic state of the inpatients. That is, greater improvement can be expected during the stabilization phase of inpatients, who are in the acute stage of their psychiatric illness, than from the traumatized refugees, whose illness has probably reached a chronic state many years ago.
Second, firm conclusions about reasons for the low rate of improvement in traumatized refugees cannot be drawn from the current routinely collected treatment data. However, it is clear that the highly versatile disability profile of the traumatized refugees presents complex treatment challenges, which truly have to be addressed on both the biological, psychological, and social levels. One of the most important steps is probably systematic use of treatment management plans. This means actively utilizing knowledge about the level and profile of psychiatric disability in order to differentiate treatment needs, and focus on the impairments that seem the most pertinent (or in case of very severe disability, identify and strengthen resources to support change in other areas of functioning). That is, patients with problems primarily on the psychological level (i.e. psychological impairment) might best profit from psychological interventions. Those with many social and psychological problems will on the other hand probably have to resolve their social issues, before being able to profit from psychotherapeutic interventions, which primarily target individual change. Also, as a consequence of their complex bio-psycho-social status, the level of psychiatric disability in some traumatized refugees may be so high as to imply that some are not able to profit very much from outpatient treatment. In this case, referral to social psychiatric initiatives should be an option, but in reality, our experience is, that Western social psychiatric services are currently not well enough equipped to meet the needs of patients with cultural backgrounds that differ from the majority population. More focus on and systematic knowledge dissemination about the needs of traumatized refugees in Western social psychiatric services are needed. Finally, some of the worst functioning traumatized refugee patients could maybe also benefit from some psycho-pharmaceutic treatment in order to alleviate the worst symptoms of e.g. severe depression, before psychotherapeutic work can be initiated. However, it should be kept in mind that the administration of psychopharmaca to traumatized refugees is a complex process requiring appropriate specialist knowledge. Furthermore, based on the complex biopsychosocial disability profile of the traumatized refugees documented in the present study, the use of psychopharmaca is only advocated as a well-integrated supplement to the multidisciplinary treatment, not as a standalone “quick fix” solution. Finally, all these alternative treatment scenarios need to be studied within more appropriate study designs, where the benefits of the specific treatment components of a multidisciplinary treatment can be properly disentangled.
Most importantly, professionals who do not work with traumatized refugees on a daily basis should be aware that the rates of expected improvement for this psychiatric group are at present likely to be modest, even in situations where the best current treatments have been made available. Also, this group of patients has never been followed up over longer periods, and little is currently known about their prognosis.
The practical use of the HoNOS with traumatized refugees
The use of the HoNOS as a measure of psychiatric disability among traumatized, refugee outpatients was as a whole found to be meaningful at the three CPTP departments. The instrument covers a range of problems that are typically encountered in psychiatric populations. As indicated by the present findings, traumatized, treatment-seeking refugees experience most of these problems as well.
There are a number of special concerns related to the use of the HoNOS among traumatized refugees. Firstly, due to the complexity of assessing social issues across different cultural backgrounds, the information available to clinicians at pre-treatment was found inadequate in relation to social problems (e.g.
problems with activities/daily living, and
living conditions). This was usually dealt with by adding questions about social problems directly to the initial assessment interview. Psychologists were also given three additional sessions in which to rate the HoNOS because the need for interpretation usually cuts the amount of information that can be acquired during a single session by one half. The use of the HoNOS among traumatized refugees would probably not have been feasible without these adjustments. Secondly, with regards to item 8 (comorbidity), it was often difficult to determine which of the patients’ comorbidities was the most central and most severe. However, this may be a general problem associated with the HoNOS, given that similar problems have been reported in relation to other populations as well [
13]. The obvious contribution of the HoNOS in the context of treatment of traumatized refugees is that it provides systematic information about a range of complex biopsychosocial problems which are necessary to enable appropriate management plans and facilitate cross-disciplinary service utilization within this group. Furthermore, a practical quality of the HoNOS is also that it is an observer-rated instrument. Thus, in a refugee treatment context, it does not require translation, and can easily be employed as a routine measure. Finally, Rasch analyses of the HoNOS within the present data indicate that it is a undimensional measure of psychiatric disability with stable psychometric properties across different measurement points, and across different cultural subgroups represented in the present material (Palic, Kappel, Makranksy: Rasch validation and cross-validation of the Health of Nation Outcome Scales (HoNOS) for purposes of monitoring of traumatized refugees in Western psychiatric care, submitted).
The use of Western scales in other cultures is generally not advised unless verification of their applicability has been provided. However, most of the CPTP patients in the present study are former refugees who had been resettled in Denmark for over a decade. Thus, although the traumatized refugees may not be well integrated into the Danish way of life, the same societal responsibilities and expectations as all other citizens and psychiatric patients are placed upon them. In this case, it is necessary to evaluate the psychiatric disability (including social function) of traumatized refugee patients in relation to the role expectations of the society in which they live. Failure to do so raises the risk of traumatized former refugees “falling through” the cracks of the treatment- and social systems, and not getting the necessary help and support to maintain a worthy existence.
Limitations
As already mentioned, the possible bias associated with the present HoNOS ratings due to the inpatient vs. outpatient setting, cannot be evaluated in the present study. Also, inter-rater agreement on the HoNOS was not assessed at CPTP. All this contributes to some uncertainty regarding the HoNOS ratings among the traumatized refugees. On the other hand, the present comparison across treatment settings is justified by previous research. A direct comparison cannot be made between the levels of comorbidity in the traumatized refugees and psychiatric inpatient groups, because the first were rated on comorbidity and the latter on anxiety. However, the levels of comorbidity/anxiety can be understood as reflecting the most pertinent comorbidity problems associated with each group. The present disability levels were recorded at only one hospital and at three departments of a specialized refugee clinic. However, given that the hospital and the refugee clinic are part of the Danish national mental health system, to which everyone in general has equal access, the selection bias associated with the presented disability levels is likely to be small.
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
SP conceived the study, has made the statistical analyses, and was responsible for drafting all parts of the paper. MLK has collected data at the CPTP, and contributed with clinical input regarding the refugee patients and their treatment needs. She was mainly involved in drafting the introduction and discussion of the manuscript. MSN has contributed with vital clinical input regarding the refugee patients and their treatment needs. She was mainly involved in drafting the introduction and discussion of the manuscript. JC has been involved in drafting all parts of the manuscript. PB has collected data at the Psychiatric Center North Zealand, and contributed with clinical input regarding the inpatients, their treatment setting, and the use of HoNOS in general. All the authors have read and approved all parts of the manuscript.