Demoralisation syndrome does not explain the psychological profile of community-based asylum-seekers

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ScienceDirect Comprehensive Psychiatry 63 (2015) 55 – 64 www.elsevier.com/locate/comppsych

Demoralisation syndrome does not explain the psychological profile of community-based asylum-seekers Debbie Hocking a,⁎, Suresh Sundram b,⁎⁎

a

Florey Institute of Neuroscience and Mental Health, Parkville, VIC, Australia b Department of Psychiatry, Monash Medical Centre, Clayton, VIC, Australia

Abstract Background: Demoralisation syndrome (DS) has been advanced as a construct that features hopelessness, meaninglessness, and existential distress. Demoralisation and DS have predominantly been considered secondary only to illness; hence there is scant research on demoralisation or DS in populations affected by extreme environmental stress. Aims: The current study aimed to determine the prevalence of demoralisation, its predictors, and the relevance of DS in a community-based forced-migrant population. Method: A convenience sample of 131 adult asylum-seekers (n = 98) and refugees (n = 33) without recognised mental disorders in Melbourne, Australia, were assessed cross-sectionally on posttraumatic stress, anxiety, depression, post-migration stress, and demoralisation. Socio-demographic data were analysed with relevant clinical data. Predictive aims were investigated using bivariate statistical tests and exploratory aims were investigated using correlational and linear regression analyses. Results: Seventy nine percent of the sample met criteria for demoralisation (asylum-seekers = 83%; refugees = 66%), with asylum-seekers being 2.55 (95% C.I. = 1.03–6.32, Z = 2.03, p = .04) times more likely to be demoralised than refugees. No relationship between demoralisation and time in the refugee determination process emerged. The regression model explained 47.5% of variance in demoralisation scores for the total sample F(9,111) = 13.07, p b .0001, with MDD and anxiety score making unique significant contributions. Conclusions: Demoralisation was widespread through the asylum-seeker and refugee population and its prevalence was attributable to a range of social and psychiatric factors. However, DS had little explanatory power for psychiatric morbidity, which was more suggestive of a pan-distress symptom complex. © 2015 Elsevier Inc. All rights reserved.

1. Introduction Demoralisation was first introduced into psychiatric nomenclature by Jerome Frank in 1961 [1]. Since this time, it has been subsumed under various rubrics, including ‘nonspecific (psychological) distress’ [2], reactive depression [3], learned helplessness [4] and existential distress [5]. Demoralisation is thought to lie on a spectrum of vulnerability [6] whereby even

⁎ Correspondence to: D. Hocking, Florey Institute of Neuroscience and Mental Health, 30 Royal Parade (corner Genetics Lane), Parkville, Victoria, 3052. Tel.: +61 3 9035 9811; fax: +61 3 9035 3107. ⁎⁎ Correspondence to: S. Sundram, Unit Head, Adult Psychiatry, Monash Health, Department of Psychiatry, Monash University, Level 3, P-Block, Monash Medical Centre, 246 Clayton Road, Clayton, Victoria, Australia, 3168. Tel.: +61 3 95947796. E-mail addresses: [email protected] (D. Hocking), [email protected] (S. Sundram). http://dx.doi.org/10.1016/j.comppsych.2015.08.008 0010-440X/© 2015 Elsevier Inc. All rights reserved.

the most resilient person may become demoralised under extreme circumstances [7]. Demoralisation is believed to be characterised by diminished self-esteem, sadness, dread, anxiety, somatic complaints, helplessness, hopelessness and confused thinking [8,9]. Functionally, demoralised individuals are thwarted by a sense of ‘subjective incompetence’ [10] – a perceived incapacity to deal effectively with stressful situations – and are preoccupied with merely trying to survive [11]. Demoralisation research has predominantly been confined to the medically ill [12–15], and to oncology and palliative care in particular [16–18]. Accordingly, hopelessness, despair and suicidality in the terminally ill gave rise to the construct of ‘Demoralisation Syndrome’ (DS). Six criteria have been proposed for DS [18] (see Appendix A), which may be encapsulated as the decline in morale on a continuum spanning disheartenment, through despondency, to despair and demoralisation (having ‘given up’) [6]. Hopelessness, as the hallmark

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criterion which distinguishes demoralisation from major depression, has been found to be associated with increased risk of suicide, independent of depression [16,19,20]. Certain populations are thought to be more vulnerable to demoralisation, with a number of risk factors cited in the literature. These include social isolation [18,21–23] and low socioeconomic status [24–26]. In particular, the unemployed are among the most psychologically vulnerable individuals in Western societies and have been found to score higher on hopelessness, worthlessness and psychological distress than their employed peers [26]. Hence, the association of demoralisation with life’s vicissitudes and social marginality [10,27] primes its relevance to asylum-seekers [28,29]. Their uncertain lives are almost invariably defined by social disadvantage and isolation, and their autonomy is constrained by a socio-legal milieu which is effectively beyond their influence. However, the general absence of hopelessness in asylum-seekers challenges the applicability of demoralisation as an explanation for psychiatric morbidity in this group [30,31]. The presumed clinical relevance to asylum-seeker populations is also owed to demoralisation being classified by some as a psychosomatic syndrome [e.g., 32], and the propensity for individuals from non-Western cultures to somatise distress [33,34]. Whilst migrant and refugee populations are thought to be more vulnerable to demoralisation [28,35], there is a paucity of research exploring demoralisation in asylum-seekers. Such investigations are necessary, as taxonomical issues extend beyond theoretical concerns, to the provision of appropriate treatment for asylum-seekers in host countries. 1.1. Aims The primary aim of the present study was to profile demoralisation and explore the applicability of DS in a community-based forced-migrant sample. A further aim was to identify the clinical and socio-demographic factors associated with – or predictive of – demoralisation, such as time in the refugee determination process (RDP), visa status, employment status, social isolation and suicidality. In particular, it was predicted that demoralisation in asylumseekers would increase as a function of time in the RDP.

2. Materials and methods 2.1. Sample and recruitment The participants (N = 131) were a convenience sample of adult (≥18 years) asylum-seekers (AS, n = 98) and refugees (PR, n = 33) without a history of having been diagnosed with, or treated for, a mental disorder (based on self-report). All were recruited through the casework programme of the Asylum Seeker Resource Centre (ASRC) in Melbourne, Australia. The latter (PR) had been assessed by the Australian Federal Government to be bonafide refugees whilst the former (AS)

were waiting for their refugee status to be determined. All asylum-seekers had lodged their application for protection and were residing in the community while their claims were being processed. Eligible participants were introduced to the research by their caseworker, who sought their permission for the researcher (DH) to contact them directly. All participants gave written, informed consent to participate. The study was approved by the Victoria University Human Research Ethics Committee. 2.2. Instruments Questionnaires were employed to measure levels of demoralisation, depression, anxiety, post-traumatic stress and post-migration stress. 2.2.1. The Harvard Trauma Questionnaire-Revised (HTQ) and the Hopkins Symptom Checklist-25 (HSCL) The HTQ-R and HSCL [36] are cross-culturally validated instruments designed to assess trauma and torture related to mass violence, and depression and anxiety symptoms, respectively. Both have widespread acceptance in the assessment of culturally diverse traumatised populations [37] and are the most widely used instruments in populations of forced migrants who have experienced pre- and post-migration trauma [38]. A 16-item subscale of the HTQ-R measured PTSD symptoms whilst the 25-item Hopkins Symptom Checklist (HSCL) measured anxiety (items 1–10) and depressive (items 11–25) symptoms [37]. The symptom timeframe is the previous week for both instruments, and both have a scoring range from 1 to 4, with higher scores indicating greater severity. The aggregate scaled score was determined by dividing the total score by the number of items. Translated versions of the HTQ-R and HSCL were used for participants who were not conversant in English. Interpreters were utilised for interviews as necessary. 2.2.2. Psychiatric Epidemiology Research Interview — Demoralisation Scale (PERI-D) The PERI-D [2] comprises 27 items which measure nonspecific distress during the previous 12 months, using a fixed-alternate response format. Based on an epidemiological study of urban residents in the United States using the Psychiatric Epidemiology Research Interview, the demoralisation scale emerged through factor analysis, comprising eight subscales. Taken together, these subscales closely correspond to the construct of demoralisation described by Frank [8]. Reliability and validity of the PERI-D have shown satisfactory results in diverse samples [9], and it has been employed with migrant [9,39] and conflict-affected [22] populations. 2.2.3. Post-Migration Living Difficulties Checklist (PMLDC) The PMLDC [40] is a 23-item checklist to assess current life stressors of forced migrants in host countries. It has been found to assess five factors: the refugee determination process; health, welfare and asylum problems; family concerns; general adaptation stressors; and social and cultural isolation. Each item is rated on a 5-point scale from ‘no problem’ to ‘very serious

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Table 1 Socio-demographic characteristics of sample (N = 131). Asylum-seekers (n = 98) Frequency a Gender Male Female Speaks English Yes No Marital Status Partnered Single Partner in Australia Yes No Region of origin Africa (Zimbabwe) Central Asia (Afghanistan) Middle East (Iran; Iraq; Lebanon) South Asia (Pakistan; Sri Lanka) Mode of arrival Boat Plane Immigration Detention Yes No No. Traumatic events b5 5–10 11–26 Education Tertiary Completed Secondary b Secondary Previous Occupation Professional Skilled/Admin Unskilled/Other Work Status No Work Rights Not working Working Medicare Yes No Torture Yes No a b

Refugees (n =33) %b

%b X 2(1) = 6.68, p = .021

87 11

88.8 11.2

23 10

69.7 30.3

86 12

12.2 87.8

32 1

97.0 3.0

53 45

54.1 45.9

17 16

51.5 48.5

30 23

30.6 23.5

15 2

45.5 6.07

12 6 11 69

12.2 6.1 11.2 70.4

9 4 4 16

27.3 12.1 12.1 48.5

5 87

5.1 88.8

0 32

0.0 100.0

8 89

8.2 91.8

0 32

0.0 100.0

2 34 56

2.2 37.0 60.9

3 10 19

9.4 31.3 59.4

Fisher’s Exact = .183

Fisher’s Exact = .842

Fisher’s Exact = .021

X 2(1) = 6.02, p = .014

Fisher’s Exact = .326

Fisher’s Exact = .199

t(122) = −.883, p = 379

X 2(2) = 2.46, p = .29 59 26 12

60.8 26.8 12.4

23 9 1

69.7 27.3 3.0 X 2(2) = 5.65, p = .06

31 43 24 25 32 37

31.6 43.9 24.5 26.6 34.0 39.4

16 7 9 – 13 19

48.5 21.2 27.3 X 2(2) = 11.43, p b .01 40.6 59.4 X 2(1) = 14.59, p b .001

62 31

66.7 33.3

33 0

100.0 –

41 51

45.1 54.9

17 14

54.8 45.2

X 2(1) = 0.54, p = .46

Total ns less than 131 are due to missing data. Refers to valid percentage, excluding missing data.

problem’, with a composite score determined. The checklist has been used or adapted for use in refugee populations globally. 2.2.4. Socio-demographic information Data were collected on a range of socio-demographic factors (see Table 1), including information relevant to participants’ status in the refugee determination process (RDP), such as Medicare 2 and employment status. 2

Frequency a

Statistic

Government-subsidised health cover.

2.3. Statistical analysis Planned comparisons (t-tests, Mann–Whitney U tests and Chi squared analyses) were performed to investigate differences across groups, symptom scores, diagnostic categories and socio-demographic variables. Spearman’s rho correlations were conducted to identify significant relationships between demoralisation, and clinical and socio-demographic variables. A multiple linear regression was conducted to identify clinical and socio-demographic predictors of demoralisation. Statistical

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Table 2 Differences in mean symptom scores for total sample by residency status. Total

Asylum-seekers

Refugees

Variable

N

Mean (SD)

n

Mean (SD)

n

Mean (SD)

Statistic

Anxiety (1–4)

128

95

Md = 2.13 (1.00–3.90)

33

Md = 1.71 (1.00–3.20)

U = 1080, p = .008

Depression (1–4)

128

95

Md = 2.54 (1.13–3.93)

33

Md = 1.92 (1.00–3.13)

U = 865, p b .001

PTSD (1–4) Post migration stress (1–5) Demoralisation (0–4)

127 128 125

Md = 1.90 (1.00–3.90) Md = 2.40 (1.00–3.93) 2.35 (0.78) 2.67 (0.63) 2.07 (0.86)

94 95 93

2.47 (0.75) 2.83 (0.55) 2.16 (0.84)

33 33 32

2.04 (0.77) 2.20 (0.62) 1.82 (0.89)

t(125) = −2.81, p = .006 t(126) = −5.42, p b .001 t(123) = −1.95, p = .054

analyses were two-tailed, applied an alpha of 0.05, and all relevant statistical assumptions were adhered to throughout. 2.3.1. Establishing caseness Caseness for major depressive disorder (MDD) and posttraumatic stress disorder (PTSD) was derived from cut-off scores for the HSCL and HTQ respectively, which were validated against the Mini-International Neuropsychiatric Interview 6.0 (MINI) as part of a prospective component of this study (not reported here, Hocking et al., submitted). The resulting cut-off scores to establish caseness for MDD (HSCL) and PTSD (HTQ) were 2.29 and 2.50, respectively. The cut-off scores for the PERI-D have been reported as 1.27 for males and 1.55 for females [22] and were applied in the current study. Male and female cut-off scores for demoralisation were manually collapsed into a single dichotomous variable to ascertain overall demoralisation caseness. 2.3.2. Excluded cases Cases which were diagnosed clinically as having a psychotic disorder or met criteria for a psychotic disorder as assessed by the MINI were excluded. Three cases were identified and all were asylum-seekers. 3. Results 3.1. Participants The sample comprised 131 participants — 33 of whom had received permanent residency (refugees) and 98 whose refugee status had yet to be determined (asylum-seekers) (Table 1). The mean age was 34.9 (SD = 10.66), with no significant difference between refugees and asylum-seekers. Similarly, the two groups were comparable on country of origin (χ 2(6) = 8.43, p = .21),

time in Australia (t(129) = −0.46, p = .64), time in the RDP (t(125) = −0.74, p = .46), and time spent in (pre-arrival) refugee camps (U = 1520, p = .99; 1–36 months, n = 4) and immigration detention (post-arrival) (1–48 months, n = 8). The sample was predominantly male (84%) and men were disproportionally higher in the asylum-seeker than refugee cohort. Whilst there was no difference between the two groups on marital status, significantly more asylum-seekers than refugees were separated from their partners. No differences emerged between the two groups on torture history or number of traumatic events experienced. All refugees had access to subsidised medical cover (Medicare) compared with only two-thirds of asylum-seekers. Similarly, more refugees than asylum-seekers were in paid employment, with over one quarter of asylum-seekers being prohibited from working. 3.2. Symptoms Asylum-seekers had significantly higher symptom scores than refugees for all measures except demoralisation, which approached significance (Table 2). 3.3. Caseness The prevalence of demoralisation caseness for the total population was 78.6%. The prevalence of PTSD and MDD in the AS group was significantly greater than that in the PR group, whilst demoralisation approached significance (Table 3). The odds ratio (OR) for demoralisation caseness in asylum-seekers was 2.55 times greater than that in refugees (95% C.I. = 1.03–6.32, Z = 2.03, p = .04). When compared with the general population, estimated at 25% by epidemiological studies [41,42], the OR for demoralisation in asylum-seekers was 14.65 (95% C.I. = 7.34–29.22, Z = 7.62, p b .0001).

Table 3 Prevalence of clinical disorders (caseness) in refugees and asylum-seekers. Refugees (%) (n = 33) Major Depression (HSCL Q11–25 ≥ 2.29) PTSD (HTQ Q1–16 ≥ 2.5) Demoralisation (Males ≥ 1.27 Females ≥ 1.55)

Asylum-seekers (%) (n = 95)

Total Sample (%) (N = 128)

Statistic 2

30.3

61.1

53.1

X (1) = 8.11, p = .004, n = 128

27.3

52.1

45.7

X 2(1) = 5.12, p = .02, n = 127

65.6

82.8

78.6

X 2(1) = 3.30, p = .07, n = 126

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Table 4 The correlation between demoralisation, and socio-demographic and clinical factors (N = 126 a). Clinical indicators

Demoralisation Symptoms

Demoralisation Caseness

Socio-demographic

Demoralisation Symptoms

Demoralisation Caseness

Depression symptoms Anxiety symptoms PTS symptoms Post migration stress MDD diagnosis PTSD Diagnosis Suicidal ideation (HSC20)

.719⁎⁎⁎ .615⁎⁎⁎ .680⁎⁎⁎ .413⁎⁎⁎ .623⁎⁎⁎ .548⁎⁎⁎

.611⁎⁎⁎ .513⁎⁎⁎ .557⁎⁎⁎ .339⁎⁎⁎ .479⁎⁎⁎ .449⁎⁎⁎

Age Gender Visa Status (PR or AS) Separation from partner Employment status Income Type

.054 .006 .163 −.051 −.197⁎ .083

−.072 .130 .184⁎ −.003 −.190⁎ .207⁎

.434⁎⁎⁎

.289⁎⁎

Social isolation (PMLDC21) Time in the RDP Medicare

.429⁎⁎⁎ .051 −.136

.305⁎⁎⁎ .048 −.121

a

2 participants did not complete the PERI-D. ⁎ Significant at the 0.05 level. ⁎⁎ Significant at the 0.01 level. ⁎⁎⁎ Significant at the 0.001 level.

3.4. Clinical and psychosocial factors A Spearman’s correlational matrix was performed between demoralisation (both symptoms and caseness), and the other clinical scales and socio-demographic variables considered to be associated with demoralisation. (i.e., gender [2,21]; age [21,33]; suicidality [26,43]; social isolation [18,21–23]; and low socioeconomic status [24–26] — encompassing unemployment and welfare dependency). Given that family separation and visa status have been associated with psychological distress in asylum-seekers [44], and that time in the RDP was hypothesised to be a predictor of demoralisation, these variables were also included in the analysis. Detention experience and ‘mode of arrival’ were excluded due to a high number of missing variables and highly skewed binomial distributions. These data are presented in Table 4, for which ‘employment’ (cf. unemployment and nil work rights) and being an asylum-seeker (‘visa status’) were assigned higher category codes. ‘Income type’ categories ranged from work (coded lowest), to welfare, and personal savings (coded highest). All clinical (n = 7) and socio-demographic (n = 4) factors that were significantly related to demoralisation (see Table 4) were then entered simultaneously as predictor variables into a multiple linear regression, with missing values omitted listwise and demoralisation score as the dependent variable. PTS and depression symptom scores were eliminated due to multicollinearity and a second analysis was performed. The Adjusted R Square in the final model explained 47.5% of the variation in demoralisation scores, F(9,111) = 13.07, p b .0001. MDD and anxiety score each made significant unique contributions (4.8% and 3.6% respectively). All factors contributing to the final model are presented in Table 5. 3.5. Profile of demoralisation symptoms In order to ascertain the demoralisation features peculiar to the current population, the pattern of PERI-D responses was further examined. The total PERI-D score was cut at quartiles for the total population, and by visa status. Mean

item scores which fell below the total PERI-D score cut of 25% were considered to be items with the lowest endorsement and items whose mean score were above the 75% cut point were considered to have the highest endorsement. The range resulting from quartile cuts for the PR group (0.22–3.44; 25% = .089, 75% = 2.61) fell outside the range of item mean scores (0.91–2.41), so PR was subsequently divided into three groups (33.3% = 1.26, 66.6% = 2.37) with the upper and lower thirds constituting the highest and lowest tertile mean scores respectively. The resulting cut points for low demoralisation scores were b1.5 (total sample), b1.26 (PR), and b1.63 (AS). The cut points for high demoralisation scores were N2.72 (total sample), N2.37 (PR), and N2.79 (AS). These cut-offs were then applied to the mean scores attained for each PERI-D item, which are displayed in Table 6. Low confidence, low self-satisfaction and feelings of failure attracted the lowest level of endorsement by both asylum-seekers and refugees. The demoralisation item that was most highly endorsed by both asylum-seekers and refugees was feelings of sadness or depression. Asylum-seekers but not refugees more frequently returned high scores on feelings of loneliness and anxiety.

Table 5 Socio-demographic and clinical predictors of demoralisation scores (N = 120). Predictor variable

Adj R Square Statistic .475

MDD Anxiety score Income Type Work status Suicidality Post-migration stress score Isolation PTSD Visa status

Part correlation

F(9,111) = 13.07, p b .0001 t = 3.27, p = .001 .22 t = 2.93, p = .004 .19 t = −1.48, p = .14 −.10 t = −1.40, p = .17 −.10 t = 1.13, p = .26 .08 t = 0.90, p = .37 .06 t = 0.87, p = .37 t = 0.61, p = .54 t = −0.17, p = .87

.06 .04 −.01

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Table 6 Highest and lowest mean demoralisation symptom item scores by visa status. Total sample

PR

AS

Item

M (SD)

M (SD)

M (SD)

1: Felt confident (R) 2: Felt useless (R) 3: Feel a failure in life 6: Satisfied with self (R) 25: Bothered by cold sweats 16: Feeling sad or depressed 17: Feeling lonely 18: Feeling anxious

1.15 (1.02) a 1.72 (1.44) 1.30 (1.33) a 1.49 (1.43) 1.36 (1.30) a 2.83 (1.13) b 2.94 (1.24) b 2.74 (1.19) b

1.06 (0.93) a 1.21 (1.22) a 0.91 (1.18) a 1.24 (1.17) a 1.41 (1.27) 2.41 (1.21) b 2.34 (1.26) 2.31 (1.28)

1.18 (1.06) a 1.90 (1.48) 1.44 (1.35) a 1.58 (1.51) a 1.34 (1.32) a 2.98 (1.06) b 3.14 (1.17) b 2.88 (1.13) b

(R) reverse-scored item. a Low mean scores. b High mean scores.

3.6. Hopelessness and helplessness To explore the extent to which hopelessness – the hallmark criterion of demoralisation – was present in the sample, the PERI-D items relating to feelings of helplessness (item 9) and hopelessness (item 10) were investigated for refugees and asylum- seekers, and those with and without major depression (as determined by the HSCL cut-off of ≥ 2.29). These aforementioned PERI-D items were converted from their 5-point (0–4) scale scores into dichotomous scores, for which a score of 3 or 4 reflected ‘Yes’, whilst ‘No’ represented a score of 0, 1, or 2. Whilst 48% of asylum-seekers felt ‘completely helpless’ fairly or very often in the previous 12 months, significantly fewer felt ‘completely hopeless’ (36%, McNemar test p = .035). Fig. 1 shows the frequency and percentage of asylumseekers and refugees by reported (dichotomised) feelings of hopelessness and helplessness. The greatest proportion of participants considered themselves to be neither helpless nor hopeless (46-61%). Least endorsed was feeling hopeless but not helpless (6%).

Table 7 Frequency of demoralisation by major depressive disorder. N = 126 a

MDD (%)

Nil MDD (%)

Total (%)

Demoralised Not demoralised Total

65 (51.6) 2 (1.6) 67 (53.2)

34 (27.0) 25 (19.8) 59 (46.8)

99 (78.6) 27 (21.4) 126 (100)

a

2 participants did not complete the PERI-D.

3.7. Comorbidity As presented in Table 7, the co-morbidity between demoralisation and MDD was high (51.6%), with a small minority (1.6%) that qualified for MDD without being demoralised, Fisher's Exact Test b .0001. The co-morbidity between demoralisation and PTSD was also high (45.6%). 3.8. Suicidality The prevalence of suicidality was 13.1% for the total population (AS: 16.8%, n = 16; PR: 3%, n = 1). It is noteworthy that 16 of the 17 participants (94%) who reported current suicidal ideation had co-morbid depression; all 17 were demoralised. 4. Discussion The aim of the current study was to characterise demoralisation and demoralisation syndrome, and to identify relevant psychosocial factors in asylum-seekers engaged in the refugee determination process (RDP) in a host Western country. 4.1. Prevalence of demoralisation The high rate (OR = 14.65) of demoralisation found in this sample compared to an estimate of the general community [27] is not surprising given the elevated rates of demoralisation reported in migrant populations [21,33]. Overall, the prevalence of demoralisation was similar to that of forced migrant samples in Australasia [35] in which 84% of participants were found to be experiencing mild to moderate levels of demoralisation. Overall 79% of the sample met the cut-off for demoralisation in our sample and prevalence trended towards being greater in asylum-seekers (83%) than refugees (66%). This is consistent with previous findings of greater psychiatric morbidity in asylum-seekers compared to those granted refugee status [44,45]. 4.2. Demoralisation as a function of time in the RDP

Fig. 1. Frequencies of demoralisation by major depressive disorder.

Our hypothesis that demoralisation would increase the longer individuals are in the RDP was not supported. We found no direct relationship between demoralisation and time in the RDP. Whilst demoralisation was high crosssectionally, there was no evidence to suggest that it increased linearly over time. Thus, whilst demoralisation syndrome (DS) is believed to be characterised by chronicity [46], this was not found in our sample. Rather, the results suggest a more complex, varying picture.

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The putative fluctuation in demoralisation may be partially explained by clinical and psychosocial factors. Unlike major depression, demoralisation may be overcome as adversity remits and life circumstances improve [7]. Hence, there may be many factors which interact to attenuate demoralised states. In respect to the RDP, it is possible that the pattern of demoralisation follows a trajectory whereby distress peaks following an RDP rejection, and abates when a further appeal is lodged. Other external factors also appear to play a role in fluctuating levels of demoralisation, such as gain or loss of employment, and social connection or isolation. Social connectivity and employment are both considered to be protective factors for demoralisation [26,27]. The complex, non-linear relationship that appeared to exist between demoralisation and time for our forced migrant sample may be elucidated by Folkman [47], who conceptualised a reciprocal relationship between hope and coping. Folkman proposed that this relationship is based on the assumption that a) hope is essential for people who are coping with serious, prolonged stress and b) hope has peaks and troughs. From this perspective, asylum-seekers may be understood as having a capacity for ‘meaning based coping’, which may help them maintain ‘generalised hope’ [43] despite extreme levels of distress evoked by protracted uncertainty. Hence, the course of demoralisation in asylum-seekers may be better understood as a protracted dialectic between hope and hopelessness. Such a dialectic has been the subject of investigation in the terminally ill, whereby – rather than an end point on a continuum – hope seems to fluctuate, playing a dynamic role and functioning as a coping mechanism [48]. However, whilst resolution may eventually be found through a process of acceptance by the terminally ill patient, for asylum-seekers, resolution of the hope-hopelessness dialectic may come only with the granting of permanent safety in the host country. The externalising of hope within immigration and legal processes compounds a feeling of helplessness. Thus, the dialectic for the asylum-seeker may involve the dogged maintenance of hope in the face of overwhelming hopelessness and helplessness; a quarantining of hope within a morass of hopelessness and helplessness. 4.3. Demoralisation syndrome in asylum-seekers? Given our findings, we argue that, as useful as demoralisation syndrome may be in explaining protracted psychological distress in the chronically or terminally ill, the current population of forced migrants did not meet the criteria for Demoralisation Syndrome [18] (see Appendix A). Whilst those who were socially isolated (criterion D) and without work were more likely to be demoralised as measured by the PERI-D, half felt neither helpless (criterion B) nor hopeless (criterion A) for much of the time since having lodged their asylum claim (to a maximum of 12 months). Furthermore, whilst the prevalence of demoralisation was 79% for those who completed measures of both demoralisation and depression, half had co-morbid major

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depression — an exclusion criterion for demoralisation syndrome (criterion F). 4.4. Key features of demoralisation According to Frank and de Figuiredo [10], the key feature of demoralisation is ‘subjective incompetence’. However, this was not experienced by the majority of asylum-seekers who generally did not consider themselves to lack confidence or experience feelings of failure (Criterion B). This suggests that they perceive the source of their distress to be extrinsic. Clarke and Kissane (2002) consider demoralisation to be defined by hopelessness, suicidal ideation and the wish to die [43]. Contrary to that found in the terminally ill [43], in our population, demoralisation was not typically associated with suicidal ideation or the wish to die, with a relatively low point prevalence of 13%. Furthermore, all but one participant who endorsed a degree of suicidal ideation met the cut-off for MDD. In our sample, demoralisation reflected high levels of psychological distress but a distinct absence of protracted hopelessness or having ‘given-up’. This was evidenced by half of the total and two-thirds of those not depressed, denying having felt completely hopeless for the majority of time in the previous year. It is contended that their high demoralisation scores therefore reflect circumstances of relative powerlessness over legal processes affecting their future rather than subjective incompetence, avolition or unequivocal, protracted despair. This is not surprising: in comparison to demoralised terminally ill patients with a desire to die, asylum-seekers risk their lives fleeing their homelands to secure a safe future for themselves and their families. It is the plight for safety and freedom that gives meaning to their lives and hope for their future. Hence, our findings suggest that suicidal ideation may be differentially associated with MDD and demoralisation in forced migrants — a result found in a forced migrant sample previously [28]. This is at odds with findings in many other populations [16,19,20,43], whereby suicidal ideation is a salient feature of demoralisation and psychological distress. Rather, the suffering reflected in demoralisation scores in forced migrants may be better understood as a normal response to extreme stress [3]. Notwithstanding, when an individual remains in an environment of ongoing threat, the clinical task of differentiating pathological from ‘normal’ responses poses a significant challenge [49]. 4.5. Demoralisation syndrome or pan-distress? Demoralisation and both MDD and PTSD had rates of around 50% comorbidity. Furthermore, all the symptom measures – PTS, depression, anxiety and post-migration stress – predicted demoralisation. In fact, demoralisation and the other clinical scales were so highly correlated, it appeared that none adequately distinguished between symptoms of particular disorders, including demoralisation. This intercorrelation has been reported elsewhere [35,50], suggesting that the constellation of symptoms found in asylum-seekers

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may be more indicative of a pan-distress symptom complex. Future work is required to determine the components, determinants and temporal features of this complex and if it constitutes a distinct syndrome. 4.6. Limitations There are some methodological limitations that warrant mentioning, such as the possibility of asylum-seekers inflating distress in order to assist in their legal cases. This is unlikely given that, whilst levels of psychiatric morbidity were higher in asylum-seekers than refugees, refugees also had far greater prevalence of mental disorder than the general population and had nothing to gain by seeking to overstate their distress. The factor structures of the Demoralisation Scale [51] – which corresponds to the proposed DS criteria – and the PERI-D are not wholly equivalent. Whilst both tap subjective incompetence to some extent (e.g., sense of failure vs. low self-esteem/self-efficacy) the PERI-D does not specifically examine loss of meaning and purpose, and the Demoralisation Scale does not consider somatic complaints. Therefore employing the PERI-D in a population with a tendency to somatise may have artificially inflated the severity of demoralisation. However, a previous study [35] of resettled refugees measuring demoralisation with the Demoralisation Scale also found the majority of their sample to have experienced demoralisation. The issue of cut-off scores to identify those who are highly demoralised is controversial and problematic [52]. The cut-off score for demoralisation was taken from previous research based on epidemiological studies, and a gold standard does not exist by which to validate demoralisation. Hence the cut off is both arbitrary and artificial, with demoralisation being better understood as a dimensional construct. The scales also differ in the timeframe for reporting symptoms. However, this has been found to reduce rather than inflate correlations [53]. Finally, the ASRC member base by gender at the time of the study was approximately 70% male, whilst our sample was further skewed in the direction of male participants (84%). This may have introduced a gender bias into the findings. E.g. Previous research has shown that women are more vulnerable to demoralisation [54,55]; thus future research in asylum seekers may show a similar trend. 5. Conclusion The findings of this study present a strong case that Demoralisation Syndrome is not a construct that can be simply applied to asylum-seekers, due to the high comorbidity with MDD and PTSD and the persistence of hope. Furthermore, in the case of asylum-seekers, there is a danger in locating the source of demoralisation in the individual rather than external factors which precipitate and maintain demoralisation, as doing so can pathologise what is essentially a socio-political issue.

Whilst the purpose of a diagnosis is to guide treatment, the aetiology must be located in domestic immigration and host factors [56]. Hence, as noted by Bhugra et al. [56], “How can a diagnosis address … unjust immigration policy?” (p.67). Therefore, whilst individual treatment such as counselling and pharmacotherapy may be useful, interventions at the social and policy level are essential to ameliorate psychological suffering in asylum-seekers in particular. Such interventions would include the right for all asylum-seekers to access employment, and to reduce discrimination and foster greater social connectivity. Author disclosure All authors declare no conflict of interest. Acknowledgment The authors acknowledge the asylum-seekers who participated in the study, as well as the caseworkers at ASRC for their assistance in the recruitment process. This research was made possible by the generous financial support of EastWeb, MinterEllison Lawyers, the Myer Foundation, and the Nordia Foundation.

Appendix A. (Proposed) Criteria for demoralisation syndrome [18] A. Affective symptoms of existential distress, including hopelessness or loss of meaning and purpose in life B. Cognitive attitudes of pessimism, helplessness, sense of being trapped, personal failure, or lacking a worthwhile future. C. Conative absence of drive or motivation to cope differently D. Associated features of social alienation or isolation and lack of support E. Allowing for fluctuation in emotional intensity, these phenomena persist across more than two weeks F. A major depressive or other psychiatric disorder is not present as the primary condition

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