Recovery for Carers of People with Psychosis: A Longitudinal Population-Based Study with Implications for Social Work

Recovery for Carers of People with Psychosis: A Longitudinal Population-Based Study with... Abstract This longitudinal study using the sampling frame of the second Australian prevalence study of psychosis aimed to identify predictors of the health and well-being of care-givers of people with psychosis and inform social work recovery-oriented practice. Ninety-eight carers were recruited at baseline and seventy-eight re-interviewed after one year. Correlational and regression analyses were conducted to identify relationships between carer and service user-related factors and predictors of carers’ health and well-being over time. Carers’ poor health and well-being were predicted by a combination of specific service user-related characteristics and care-giving factors. Carers’ assessment of the functioning of their relative/friend with psychosis at baseline had stronger relationships with their own health and well-being at follow-up than other factors. Carers’ care-giving burden was predicted by their educational levels and their relative/friend’s cognitive levels over time. To achieve improved health and well-being for carers, services need to consider potential deterioration of carers’ physical health over time, to facilitate appropriate referral of carers with physical health problems and provide psycho-social rehabilitation services to improve the functioning of people with psychosis. Findings provide some evidence to support social work recovery-oriented practice in working with people with psychosis and the routine inclusion of carers in such interventions. Carers, psychotic disorders, population-based, physical health, recovery Introduction Social workers have played a significant role in working with families and care-givers of people treated within mental health services but there is a lack of evidence on effective social work interventions to meet the needs of care-givers (Tew et al., 2012; Fox et al., 2015). Social work emphasises the importance of the relationship between the person with mental illness and their world, including family members and carers (Bland et al., 2015). Social work in mental health has remained focused on core social work knowledge such as person-in-environment approaches (Green and McDermott, 2010). The contributions of social work practice in mental health are in addressing how the environment of the person with mental illness may influence the illness, and how the illness may affect the person, family and communities (Bland et al., 2015). In mental health, several care-giving theories and models were developed in the 1990s to address the complexity of the care-giving impact. An early theory proposed that carers of people with mental illness experience objective and subjective burdens as a result of their role (Hoenig and Hamilton, 1966). Due to the difficulties in measuring care-giving burden and the recognition of the importance of carers’ appraisal of their care-giving experience, a stress-coping model was developed (Szmukler et al., 1996). A more recent model describes the connection between the cognitive process of appraisal and reactions of carers and the provision of mental health services (Kuipers et al., 2010). Although these models described the importance of carers’ appraisal of their experience, they did not provide evidence to support recovery-oriented social work practice in working with both persons with mental illness and their families. Recently, the principles of recovery have been increasingly evident as part of formal mental health policy but they have not been as widely implemented in mental health services as anticipated (Simpson et al., 2016). Recovery refers to a unique and personal journey of people affected by mental illness, including carers, to find new meaning and purpose (Anthony, 1993; Webber and Joubert, 2015), while psycho-social rehabilitation refers to the provision of interventions to support improved functioning, community integration, quality of life and recovery of people impacted by mental illness (Pratt et al., 1999). Many have argued that there has been a lack of progress in provision of psycho-social rehabilitation services with the potential to support recovery of those with the most complex mental health needs (Whiteford et al., 2002). More importantly, despite carers’ contribution to positive outcomes for their relatives or friends with mental illness, recovery-informed practice has centred on people with mental illness and largely overlooked carers’ recovery (Hungerford and Richardson, 2013). The increasing emphasis on recovery of people with mental illness has presented new opportunities as well as challenges for social workers to extend their work in supporting the recovery of carers (Wilson and Kirwan, 2007; Wyder and Bland, 2014; Fox et al., 2015). Care-giving burden, distress and experiences Research has shown that care-givers of people with psychosis experience predominantly negative effects such as psychological distress, trauma and aggression, and carer burden (Hjärthag et al., 2010; Hayes et al., 2015; Jansen et al., 2015). Longitudinal studies provide further evidence that more severe psychotic symptoms (Parabiaghi et al., 2007), lack of psychiatric services for continuous treatment (Roick et al., 2006) and magnitude of carer burden at baseline itself (Parabiaghi et al., 2007) were strong predictors of long-term carer burden. However, the results of most care-giving studies cannot be readily generalised to understand the recovery process of carers due to small sample sizes (Parabiaghi et al., 2007; Møller et al., 2009) and convenience-sample recruitment of carers from psychiatric services or family intervention programmes (Roick et al., 2006; Hjärthag et al., 2010; Stephens et al., 2011). The current study was conducted in the context of the second Australian prevalence study of psychotic disorders, the Survey of High Impact Psychosis (SHIP), in order to obtain more generalisable results regarding carers to provide evidence-based findings to inform social work recovery-oriented practice in mental health. A report of this population-based study was previously published showing that carers’ health and well-being did not improve over time and that their perceived physical health deteriorated in the course of just one year (Poon et al., 2017). The current paper sought to examine the relationships between illness-related factors and carer’s health and well-being over a one-year period, and identify predictors of carer’s health and well-being over time. The hypothesis was that care-givers’ health and well-being would be predicted by a combination of carer factors and by their relatives’ illness-related factors. Method Overview of the second Australian prevalence study of psychosis The second Australian prevalence study of psychosis was conducted in seven sites in 2010 and randomly selected people who screened positive for psychosis to participate in an in-depth interview. The SHIP recruitment method and principal service user-based findings can be found in an earlier publication (Morgan et al., 2012). Participants and procedure The first author contacted the SHIP participants and their carers from the two Victorian SHIP recruitment sites and sought their written consent to participate in this study. A validated, structured questionnaire was mailed to the carers or used in face-to-face interviews. One year later, the first author re-contacted these carers for a follow-up interview. The study recruited ninety-eight carers at baseline and re-interviewed seventy-eight of them at follow-up between August 2010 and August 2013. The full procedures and recruitment can be found in the earlier publication (Poon et al., 2017). The study was approved by Melbourne Health (Reference: 2010.011), St Vincent’s Hospital (Melbourne) (Reference: 111/11) and the University of Melbourne (Reference: 1034494.1) Human Research Ethics Committees. Sample size A sample size of 100 was calculated: (i) based on alpha of 0.05 (which is the traditional level of statistical significance), (ii) power was set at 0.80 (as recommended for behavioural research in Green (1991)) and (iii) effect size (f2) was calculated as 0.15 based on correlation coefficient (R2) of 0.13. The choice of a moderate effect size (f2 = 0.15; R2 = 0.13) was a conservative estimate based on the contrasting results concerning predictors of care-giver burden in the literature. This sample size could accommodate up to five predictors in a regression model and test both the correlation coefficient and individual predictors assuming moderate-sized effects (Green, 1991). Measures A number of validated, standardised questionnaires to assess carers’ health and well-being were used, based on several reviews of the impact of care-giving (Ohaeri, 2003; Awad and Voruganti, 2008). The social connectedness of the carers was measured using the Friendship Scale (FSS) (Hawthorne, 2006). Lower scores on FSS indicated greater social isolation. The Kessler-10 (K10) was used to measure psychological distress in the carers and higher scores indicated greater psychological distress (Kessler et al., 2002). The Mental Illness Version of the Texas Inventory of Grief (MIVTIG) is a validated and widely used scale to measure feelings of grief in care-givers of people with mental illness (Miller et al., 1990). The MIVTIG was used for this purpose and higher scores indicated more prominent grief. The World Health Organisation Quality of Life BREF (WHOQOL-BREF) was used to measure the perceived quality of life of the carers in four domains: Physical Health, Psychological Health, Social Relationships and Environment, and lower scores indicated poorer satisfaction concerning their quality of life (WHOQOL Group, 1998). The Involvement Evaluation Questionnaire (IEQ) was used to measure the care-giving consequences experienced by the carers and higher scores indicated greater care-giving consequences (van Wijngaarden et al., 2000). The IEQ yields a total score and four subscales: Tension, Supervision, Worrying and Urging. Tension refers to the strained inter-personal atmosphere between the carer and the person with mental illness. Supervision refers to the tasks performed by the carer in looking after the person with mental illness. Worry refers to painful inter-personal cognitions of the carer’s concerns about the person with mental illness. Urging refers to activating and motivating the person with mental illness to do some tasks. Carers also completed the Life Skills Profile-20 (LSP-20) which was used to assess the functioning of their relative or friend with psychosis (Rosen et al., 2001). The LSP-20 covers five areas of functioning: Self-care, Anti-social, Withdrawal, Bizarre and Compliance, and higher scores indicate better functioning. Service user-related factors and socio-demographic characteristics of the SHIP participants were obtained from the SHIP interviews. The International Classification of Diseases 10th Revision diagnoses for mental disorders experienced by the SHIP participants were derived using the Diagnostic Interview for Psychosis (Castle et al., 2006). Their current cognitive functioning was assessed using the Digit Symbol Coding Test (DSCT) (Randolph et al., 1998) and their overall functioning was estimated using the Personal and Social Performance Scale (PSP) (Morosini et al., 2000). The course of illness was categorised as a single episode; multiple episodes of acute illness with partial/good recovery; continuous, chronic course with/without deterioration (Morgan et al., 2012). Statistical analysis Statistical analyses examined correlations between carer variables and service user-related characteristics. The course of mental disorder variable was collapsed into three categories: single episode, multiple episodes and continuous chronic illness, as some categories had few cases. The carers’ highest attained education levels were collapsed into three categories: primary, secondary and tertiary, as there were few cases in each of the subcategories in the tertiary education level. Pearson correlation was used for variables with normal distributions, Spearman’s rho (rs) was used for variables with other distributions and one-way ANOVA was used for categorical predictors. Multiple linear regression analysis was conducted for follow-up outcome variables that were shown to have statistically significant relationships with baseline explanatory variables that might predict changes in the follow-up outcome variable scores. In regression models, carers’ age and gender were first added to the equation followed by baseline explanatory variables. Predictors were added incrementally to evaluate any significant improvement in prediction of follow-up outcome variable scores. The data were analysed using SPSS version 21 (IBM Corp., 2012). Results Socio-demographic characteristics of carers The mean age of carers was 57.1 years (SD = 12.1) and most (76 per cent) were female. A higher percentage of them (n = 58, 59 per cent) were married or in a de facto relationship than never married (n=10, 10 per cent), divorced or separated (n=26, 27 per cent) or widowed (n=4, 4 per cent). The highest level of education attained by the carers was: primary education (n=8, 8 per cent), secondary education (n=32, 33 per cent) and tertiary education (n=58, 59 per cent). Most of them were employed (n=62, 63 per cent), followed by not in labour force (n=32, 33 per cent) and unemployed (n=4, 4 per cent). Socio-demographic characteristics of SHIP participants Most of the SHIP participants in this study (n=98) were male (65 per cent) and their median age was 33.0 years (range = 18–62). A large percentage of them were single (n=71, 72 per cent), followed by married or in a de facto relationship (n=17, 17 per cent), divorced or separated (n=9, 9 per cent) and widowed (n=1, 1 per cent). The highest level of education attained by the SHIP participants was: left school without a certificate (n=23, 24 per cent), secondary (n=22, 22 per cent), trade certificate (n=30, 31 per cent) and tertiary (n=23, 24 per cent). For employment status, 47 per cent of them were unemployed, 44 per cent were employed and the rest were fulfilling home duties, caring for someone, volunteering or studying in the last twelve months. Nature of care-giving relationships Three-fifths (n=61, 62 per cent) of the carers were parents, followed by spouses/partners (n=15, 15 per cent), siblings (n=11, 11 per cent), friends (n=7, 7 per cent) and others (n=4, 4 per cent). Most (93 per cent) of the spouses/partners were living with the person with psychosis compared to around half (48 per cent) of the parents. Those carers who were not living with the SHIP participants maintained close relationships by at least weekly phone (77 per cent) and face-to-face (67 per cent) contacts. The number of years caring for the SHIP participant was highly varied (median = 4.0, range = 2.0–30.0 years). Correlations between demographic factors of carers with carers’ health and well-being characteristics The age of the carers was negatively correlated with K10 scores (rs = –0.214, p=0.034) and positively correlated with WHOQOL Psychological Health (rs=0.237, p=0.019) indicating that older carers were likely to have better psychological health. The carers’ education level was statistically associated with WHOQOL-BREF Physical Health (F(2,95)=8.915, p < 0.001): primary (mean=21.0, SD=5.04, 95%CI=16.8, 25.2, n=8), secondary (mean=28.1, SD=4.25, 95%CI=26.5, 29.6, n=32) and tertiary (mean=27.8, SD=4.46, 95%CI=26.6, 29.0, n=58). Carers’ education level was also statistically associated with Sum IEQ (F(2,95)=3.401, p=0.037), IEQ Supervision (F(2,95)=3.967, p=0.022) and IEQ Urging (F(2,95)=4.888, p=0.010). Carers with a higher education level were likely to report better quality of life regarding physical health; were less likely to attempt to persuade their relative or friend with psychosis to undertake activities; were less likely to supervise the behaviour of those for whom they were caring; and were less likely to experience substantial negative care-giving impact. Correlations between demographic and service user-related factors of SHIP participants with carers’ health and well-being characteristics Age of the SHIP participants was positively correlated with their carers’ WHOQOL-BREF Psychological Health (rs=0.237, p=0.019) indicating that carers of older people with psychosis were likely to have better psychological health. Type of mental disorder had a statistically significant relationship with WHOQOL-BREF Physical Health (F(5,92)=2.903, p=0.018). Carers of people with schizoaffective (mean=64.1, SD=19.3, 95%CI=54.2, 74.0, n=17) and bipolar disorders (mean=66.3, SD=17.2, 95%CI=58.5, 74.2, n=21) had poorer physical health satisfaction than carers of people with schizophrenia (mean=76.6, SD=15.6, 95%CI=71.7, 81.5, n=21) and severe depression without psychosis (mean=75.6, SD=13.0, 95%CI=67.7, 83.4, n=13). This finding was further explored to identify possible explanations for the relationship between type of mental disorder and carers’ physical health satisfaction. The type of mental disorder was found to be associated with the education level of carers (χ2=39.30, df=1, p=0.034), with a higher percentage of carers of people with schizophrenia (n=17 of 41, 42 per cent) and severe depression without psychosis (n=5 of 13, 39 per cent) having secondary schooling as their highest level of education. DSCT scores, which indicated the current cognitive functioning of the SHIP participants, were statistically significantly correlated with their carers’ IEQ Tension scores (r=0.205, p=0.044, n=97) and IEQ Supervision scores (r=0.208, p=0.040, n=97). Care-givers of people who had higher current cognitive functioning were more likely to experience increased tension and more likely to supervise the behaviour of their relatives or friends. This finding was also further explored to identify possible explanations for this relationship. DSCT scores were found to be negatively correlated with age of the SHIP participants (r=–0.239, p=0.018, n=97), indicating that older SHIP participants had lower cognitive functioning. PSP scores, which measure functioning levels of the SHIP participants, were positively correlated with their carers’ Friendship Scale scores (r=0.245, p=0.015) and negatively correlated with the MIVTIG scores (r=–0.289, p=0.005, n=93), IEQ Worrying scores (r=–0.243, p=0.016), IEQ Urging scores (r=–0.245, p=0.015) and IEQ Sum scores (r=–0.232, p=0.022). Care-givers of SHIP participants with higher personal and social performance were likely to be more socially connected; had less grief; urged those for whom they were caring less; had less worry; and experienced less care-giving impact. The LSP-20 scores, which were reported by carers, showed that functioning levels were highly correlated with carers’ outcome variables (Table 1). The care-givers were likely to experience greater psychological distress, greater social isolation, worse grief, poorer quality of life and greater care-giving consequences when those for whom they were caring had poorer functioning as perceived by carers themselves. Table 1 Baseline correlations of LSP scores with carers’ outcome variables scores LSP Bizarre LSP Self-care LSP Anti-social LSP Withdrawal LSP Compliance LSP Sum FSS rs 0.296 0.211 0.276 0.146 0.168 0.275 P 0.003* 0.037* 0.006* 0.152 0.099 0.006* K10 rs –0.319 –0.211 –0.297 –0.177 –0.251 –0.348 P 0.001* 0.037* 0.003* 0.081 0.013* <0.001* MIVTIG rs –0.397 –0.327 –0.299 –0.290 –0.307 –0.404 P <0.001* 0.001* 0.004* 0.005* 0.030* <0.001* WHOQOL-BREF Physical rs 0.246 0.190 0.167 –0.008 0.112 0.134 P 0.015* 0.061 0.100 0.936 0.273 0.188 WHOQOL-BREF Psychological r 0.224 0.275 0.328 0.199 0.210 0.314 P 0.027* 0.006* 0.001* 0.050* 0.039* 0.002* WHOQOL-BREF Social r 0.302 0.281 0.416 0.133 0.238 0.349 P 0.003* 0.005* <0.001* 0.193 0.019* <0.001* WHOQOL-BREF Environment r 0.211 0.186 0.214 0.120 0.255 0.236 P 0.037* 0.067 0.034* 0.241 0.012* 0.019* IEQ Urging r –0.207 –0.253 –0.159 –0.310 –0.205 –0.277 P 0.041* 0.012* 0.118 0.002* 0.044* 0.006* IEQ Supervision rs –0.255 –0.209 –0.225 –0.157 –0.248 –0.263 P 0.011* 0.039* 0.026* 0.123 0.014* 0.009* IEQ Tension rs –0.464 –0.415 –0.606 –0.347 –0.447 –0.584 P <0.001* <0.001* <0.001* <0.001* <0.001* <0.001* IEQ Worrying r –0.390 –0.478 –0.482 –0.350 –0.418 –0.530 P <0.001* <0.001* <0.001* <0.001* <0.001* <0.001* IEQ Sum r –0.348 –0.369 –0.391 –0.318 –0.368 –0.444 P <0.001* <0.001* <0.001* 0.001* <0.001* <0.001* LSP Bizarre LSP Self-care LSP Anti-social LSP Withdrawal LSP Compliance LSP Sum FSS rs 0.296 0.211 0.276 0.146 0.168 0.275 P 0.003* 0.037* 0.006* 0.152 0.099 0.006* K10 rs –0.319 –0.211 –0.297 –0.177 –0.251 –0.348 P 0.001* 0.037* 0.003* 0.081 0.013* <0.001* MIVTIG rs –0.397 –0.327 –0.299 –0.290 –0.307 –0.404 P <0.001* 0.001* 0.004* 0.005* 0.030* <0.001* WHOQOL-BREF Physical rs 0.246 0.190 0.167 –0.008 0.112 0.134 P 0.015* 0.061 0.100 0.936 0.273 0.188 WHOQOL-BREF Psychological r 0.224 0.275 0.328 0.199 0.210 0.314 P 0.027* 0.006* 0.001* 0.050* 0.039* 0.002* WHOQOL-BREF Social r 0.302 0.281 0.416 0.133 0.238 0.349 P 0.003* 0.005* <0.001* 0.193 0.019* <0.001* WHOQOL-BREF Environment r 0.211 0.186 0.214 0.120 0.255 0.236 P 0.037* 0.067 0.034* 0.241 0.012* 0.019* IEQ Urging r –0.207 –0.253 –0.159 –0.310 –0.205 –0.277 P 0.041* 0.012* 0.118 0.002* 0.044* 0.006* IEQ Supervision rs –0.255 –0.209 –0.225 –0.157 –0.248 –0.263 P 0.011* 0.039* 0.026* 0.123 0.014* 0.009* IEQ Tension rs –0.464 –0.415 –0.606 –0.347 –0.447 –0.584 P <0.001* <0.001* <0.001* <0.001* <0.001* <0.001* IEQ Worrying r –0.390 –0.478 –0.482 –0.350 –0.418 –0.530 P <0.001* <0.001* <0.001* <0.001* <0.001* <0.001* IEQ Sum r –0.348 –0.369 –0.391 –0.318 –0.368 –0.444 P <0.001* <0.001* <0.001* 0.001* <0.001* <0.001* * , significant; rs, Spearman’s rho correlation; r, Pearson correlation. n=98 except for MIVTIG (n=93) and Compliance subscale (n=97). Table 1 Baseline correlations of LSP scores with carers’ outcome variables scores LSP Bizarre LSP Self-care LSP Anti-social LSP Withdrawal LSP Compliance LSP Sum FSS rs 0.296 0.211 0.276 0.146 0.168 0.275 P 0.003* 0.037* 0.006* 0.152 0.099 0.006* K10 rs –0.319 –0.211 –0.297 –0.177 –0.251 –0.348 P 0.001* 0.037* 0.003* 0.081 0.013* <0.001* MIVTIG rs –0.397 –0.327 –0.299 –0.290 –0.307 –0.404 P <0.001* 0.001* 0.004* 0.005* 0.030* <0.001* WHOQOL-BREF Physical rs 0.246 0.190 0.167 –0.008 0.112 0.134 P 0.015* 0.061 0.100 0.936 0.273 0.188 WHOQOL-BREF Psychological r 0.224 0.275 0.328 0.199 0.210 0.314 P 0.027* 0.006* 0.001* 0.050* 0.039* 0.002* WHOQOL-BREF Social r 0.302 0.281 0.416 0.133 0.238 0.349 P 0.003* 0.005* <0.001* 0.193 0.019* <0.001* WHOQOL-BREF Environment r 0.211 0.186 0.214 0.120 0.255 0.236 P 0.037* 0.067 0.034* 0.241 0.012* 0.019* IEQ Urging r –0.207 –0.253 –0.159 –0.310 –0.205 –0.277 P 0.041* 0.012* 0.118 0.002* 0.044* 0.006* IEQ Supervision rs –0.255 –0.209 –0.225 –0.157 –0.248 –0.263 P 0.011* 0.039* 0.026* 0.123 0.014* 0.009* IEQ Tension rs –0.464 –0.415 –0.606 –0.347 –0.447 –0.584 P <0.001* <0.001* <0.001* <0.001* <0.001* <0.001* IEQ Worrying r –0.390 –0.478 –0.482 –0.350 –0.418 –0.530 P <0.001* <0.001* <0.001* <0.001* <0.001* <0.001* IEQ Sum r –0.348 –0.369 –0.391 –0.318 –0.368 –0.444 P <0.001* <0.001* <0.001* 0.001* <0.001* <0.001* LSP Bizarre LSP Self-care LSP Anti-social LSP Withdrawal LSP Compliance LSP Sum FSS rs 0.296 0.211 0.276 0.146 0.168 0.275 P 0.003* 0.037* 0.006* 0.152 0.099 0.006* K10 rs –0.319 –0.211 –0.297 –0.177 –0.251 –0.348 P 0.001* 0.037* 0.003* 0.081 0.013* <0.001* MIVTIG rs –0.397 –0.327 –0.299 –0.290 –0.307 –0.404 P <0.001* 0.001* 0.004* 0.005* 0.030* <0.001* WHOQOL-BREF Physical rs 0.246 0.190 0.167 –0.008 0.112 0.134 P 0.015* 0.061 0.100 0.936 0.273 0.188 WHOQOL-BREF Psychological r 0.224 0.275 0.328 0.199 0.210 0.314 P 0.027* 0.006* 0.001* 0.050* 0.039* 0.002* WHOQOL-BREF Social r 0.302 0.281 0.416 0.133 0.238 0.349 P 0.003* 0.005* <0.001* 0.193 0.019* <0.001* WHOQOL-BREF Environment r 0.211 0.186 0.214 0.120 0.255 0.236 P 0.037* 0.067 0.034* 0.241 0.012* 0.019* IEQ Urging r –0.207 –0.253 –0.159 –0.310 –0.205 –0.277 P 0.041* 0.012* 0.118 0.002* 0.044* 0.006* IEQ Supervision rs –0.255 –0.209 –0.225 –0.157 –0.248 –0.263 P 0.011* 0.039* 0.026* 0.123 0.014* 0.009* IEQ Tension rs –0.464 –0.415 –0.606 –0.347 –0.447 –0.584 P <0.001* <0.001* <0.001* <0.001* <0.001* <0.001* IEQ Worrying r –0.390 –0.478 –0.482 –0.350 –0.418 –0.530 P <0.001* <0.001* <0.001* <0.001* <0.001* <0.001* IEQ Sum r –0.348 –0.369 –0.391 –0.318 –0.368 –0.444 P <0.001* <0.001* <0.001* 0.001* <0.001* <0.001* * , significant; rs, Spearman’s rho correlation; r, Pearson correlation. n=98 except for MIVTIG (n=93) and Compliance subscale (n=97). Predictors of follow-up outcome variables The predictors of carers’ psychological health, quality of life, grief, social connectedness and care-giving consequences were found to be associated with both service user-related factors and carer demographics (Table 2). Significant predictors of K10 scores were gender and age of the carers, and baseline LSP Bizarre scores; predictors of FSS scores were age and gender of carers; and predictors of MIVTIG scores were baseline LSP Sum scores. Predictors of WHOQOL Physical health scores were baseline LSP Anti-social; Psychological health scores were baseline LSP Anti-social and Self-care; and Social relationships scores were baseline LSP Bizarre. Predictors of IEQ Urging scores were age, gender and education of carers, and baseline LSP Sum; Supervision scores were education of carers, DSCT scores and baseline LSP Sum scores; Tension scores were age, gender and education of carers, DSCT scores and baseline LSP Sum scores; Worrying scores were baseline LSP Sum scores; and IEQ Sum scores were age, gender and education of carers, course of disorder, DSCT scores and baseline LSP Sum scores. Total predictive effects (R2) of the variables were relatively modest. Summarising these, the service user-related factors identified were: course of mental disorder, current cognitive functioning (as measured by DSCT scores) and functioning level (as perceived by carers using LSP). Carer variables identified included age, gender and educational attainment. Table 2 Standard beta weights and incremental R2 for predictors of follow-up care-giving outcome variables in multiple regression analyses Outcome variables Model Variables added Final β R2 P-value K10 1 Age of carers –0.334 0.112 0.003 2 (1 ) + Gender of carers –0.035 0.113 0.011 3 (2 ) + Baseline LSP Bizarre –0.102 0.123 0.021 FSS 1 Age of carers 0.322 0.104 0.004 2 (1) + Gender of carers 0.011 0.104 0.016 MIVTIG 1 Age of carers –0.102 0.010 0.403 2 (1) + Gender of carers 0.058 0.014 0.632 3 (2) + Baseline LSP Sum –0.414 0.174 0.006 WHOQOL-BREF Physical 1 Age of carers –0.045 0.002 0.697 2 (1) + Gender of carers 0.065 0.006 0.790 3 (2) + Education of carers 0.214 0.052 0.267 4 (3) + Baseline LSP Anti-social 0.291 0.131 0.034 WHOQOL-BREF Psychological 1 Age of carers 0.213 0.045 0.061 2 (1) + Gender of carers 0.025 0.046 0.171 3 (2) + Education of carers –0.161 0.072 0.136 4 (3) + Baseline LSP Anti-social 0.307 0.160 0.012 5 (4) + Baseline LSP Self-care 0.201 0.189 0.009 WHOQOL-BREF Social 1 Age of carers 0.191 0.037 0.094 2 (1) + Gender of carers 0.093 0.045 0.177 3 (2) + Education of carers –0.211 0.089 0.073 4 (3) + Baseline LSP Bizarre 0.196 0.125 0.042 WHOQOL-BREF Environment 1 Age of carers 0.100 0.010 0.381 2 (1) + Gender of carers 0.107 0.021 0.443 3 (2) + Education of carers –0.006 0.022 0.655 IEQ Urging 1 Age of carers –0.315 0.099 0.005 2 (1) + Gender of carers –0.208 0.142 0.003 3 (2) + Education of carers –0.266 0.212 0.001 4 (3) + Baseline LSP Sum –0.193 0.245 0.000 IEQ Supervision 1 Age of carers –0.145 0.021 0.205 2 (1) + Gender of carers –0.131 0.038 0.232 3 (2) + Education of carers –0.279 0.114 0.029 4 (3) + DSCT of SHIP 0.222 0.163 0.010 5 (4) + Baseline LSP Sum –0.125 0.177 0.014 IEQ Tension 1 Age of carers –0.302 0.091 0.007 2 (1) + Gender of carers –0.055 0.094 0.024 3 (2) + Education of carers –0.153 0.117 0.026 4 (3) + DSCT of SHIP 0.107 0.128 0.038 5 (4) + Baseline LSP Sum –0.400 0.270 <0.001 IEQ Worrying 1 Age of carers –0.138 0.019 0.229 2 (1) + Gender of carers 0.000 0.019 0.488 3 (2) + Education of carers –0.155 0.042 0.360 4 (3) + Baseline LSP Sum –0.438 0.215 0.001 IEQ Sum 1 Age of carers –0.281 0.079 0.013 2 (1) + Gender of carers –0.119 0.093 0.026 3 (2) + Education of carers –0.252 0.155 0.006 4 (3) + Course of disorder of SHIP 0.105 0.166 0.009 5 (4) + DSCT of SHIP 0.117 0.179 0.013 6 (5) + Baseline LSP Sum –0.346 0.284 <0.001 Outcome variables Model Variables added Final β R2 P-value K10 1 Age of carers –0.334 0.112 0.003 2 (1 ) + Gender of carers –0.035 0.113 0.011 3 (2 ) + Baseline LSP Bizarre –0.102 0.123 0.021 FSS 1 Age of carers 0.322 0.104 0.004 2 (1) + Gender of carers 0.011 0.104 0.016 MIVTIG 1 Age of carers –0.102 0.010 0.403 2 (1) + Gender of carers 0.058 0.014 0.632 3 (2) + Baseline LSP Sum –0.414 0.174 0.006 WHOQOL-BREF Physical 1 Age of carers –0.045 0.002 0.697 2 (1) + Gender of carers 0.065 0.006 0.790 3 (2) + Education of carers 0.214 0.052 0.267 4 (3) + Baseline LSP Anti-social 0.291 0.131 0.034 WHOQOL-BREF Psychological 1 Age of carers 0.213 0.045 0.061 2 (1) + Gender of carers 0.025 0.046 0.171 3 (2) + Education of carers –0.161 0.072 0.136 4 (3) + Baseline LSP Anti-social 0.307 0.160 0.012 5 (4) + Baseline LSP Self-care 0.201 0.189 0.009 WHOQOL-BREF Social 1 Age of carers 0.191 0.037 0.094 2 (1) + Gender of carers 0.093 0.045 0.177 3 (2) + Education of carers –0.211 0.089 0.073 4 (3) + Baseline LSP Bizarre 0.196 0.125 0.042 WHOQOL-BREF Environment 1 Age of carers 0.100 0.010 0.381 2 (1) + Gender of carers 0.107 0.021 0.443 3 (2) + Education of carers –0.006 0.022 0.655 IEQ Urging 1 Age of carers –0.315 0.099 0.005 2 (1) + Gender of carers –0.208 0.142 0.003 3 (2) + Education of carers –0.266 0.212 0.001 4 (3) + Baseline LSP Sum –0.193 0.245 0.000 IEQ Supervision 1 Age of carers –0.145 0.021 0.205 2 (1) + Gender of carers –0.131 0.038 0.232 3 (2) + Education of carers –0.279 0.114 0.029 4 (3) + DSCT of SHIP 0.222 0.163 0.010 5 (4) + Baseline LSP Sum –0.125 0.177 0.014 IEQ Tension 1 Age of carers –0.302 0.091 0.007 2 (1) + Gender of carers –0.055 0.094 0.024 3 (2) + Education of carers –0.153 0.117 0.026 4 (3) + DSCT of SHIP 0.107 0.128 0.038 5 (4) + Baseline LSP Sum –0.400 0.270 <0.001 IEQ Worrying 1 Age of carers –0.138 0.019 0.229 2 (1) + Gender of carers 0.000 0.019 0.488 3 (2) + Education of carers –0.155 0.042 0.360 4 (3) + Baseline LSP Sum –0.438 0.215 0.001 IEQ Sum 1 Age of carers –0.281 0.079 0.013 2 (1) + Gender of carers –0.119 0.093 0.026 3 (2) + Education of carers –0.252 0.155 0.006 4 (3) + Course of disorder of SHIP 0.105 0.166 0.009 5 (4) + DSCT of SHIP 0.117 0.179 0.013 6 (5) + Baseline LSP Sum –0.346 0.284 <0.001 Table 2 Standard beta weights and incremental R2 for predictors of follow-up care-giving outcome variables in multiple regression analyses Outcome variables Model Variables added Final β R2 P-value K10 1 Age of carers –0.334 0.112 0.003 2 (1 ) + Gender of carers –0.035 0.113 0.011 3 (2 ) + Baseline LSP Bizarre –0.102 0.123 0.021 FSS 1 Age of carers 0.322 0.104 0.004 2 (1) + Gender of carers 0.011 0.104 0.016 MIVTIG 1 Age of carers –0.102 0.010 0.403 2 (1) + Gender of carers 0.058 0.014 0.632 3 (2) + Baseline LSP Sum –0.414 0.174 0.006 WHOQOL-BREF Physical 1 Age of carers –0.045 0.002 0.697 2 (1) + Gender of carers 0.065 0.006 0.790 3 (2) + Education of carers 0.214 0.052 0.267 4 (3) + Baseline LSP Anti-social 0.291 0.131 0.034 WHOQOL-BREF Psychological 1 Age of carers 0.213 0.045 0.061 2 (1) + Gender of carers 0.025 0.046 0.171 3 (2) + Education of carers –0.161 0.072 0.136 4 (3) + Baseline LSP Anti-social 0.307 0.160 0.012 5 (4) + Baseline LSP Self-care 0.201 0.189 0.009 WHOQOL-BREF Social 1 Age of carers 0.191 0.037 0.094 2 (1) + Gender of carers 0.093 0.045 0.177 3 (2) + Education of carers –0.211 0.089 0.073 4 (3) + Baseline LSP Bizarre 0.196 0.125 0.042 WHOQOL-BREF Environment 1 Age of carers 0.100 0.010 0.381 2 (1) + Gender of carers 0.107 0.021 0.443 3 (2) + Education of carers –0.006 0.022 0.655 IEQ Urging 1 Age of carers –0.315 0.099 0.005 2 (1) + Gender of carers –0.208 0.142 0.003 3 (2) + Education of carers –0.266 0.212 0.001 4 (3) + Baseline LSP Sum –0.193 0.245 0.000 IEQ Supervision 1 Age of carers –0.145 0.021 0.205 2 (1) + Gender of carers –0.131 0.038 0.232 3 (2) + Education of carers –0.279 0.114 0.029 4 (3) + DSCT of SHIP 0.222 0.163 0.010 5 (4) + Baseline LSP Sum –0.125 0.177 0.014 IEQ Tension 1 Age of carers –0.302 0.091 0.007 2 (1) + Gender of carers –0.055 0.094 0.024 3 (2) + Education of carers –0.153 0.117 0.026 4 (3) + DSCT of SHIP 0.107 0.128 0.038 5 (4) + Baseline LSP Sum –0.400 0.270 <0.001 IEQ Worrying 1 Age of carers –0.138 0.019 0.229 2 (1) + Gender of carers 0.000 0.019 0.488 3 (2) + Education of carers –0.155 0.042 0.360 4 (3) + Baseline LSP Sum –0.438 0.215 0.001 IEQ Sum 1 Age of carers –0.281 0.079 0.013 2 (1) + Gender of carers –0.119 0.093 0.026 3 (2) + Education of carers –0.252 0.155 0.006 4 (3) + Course of disorder of SHIP 0.105 0.166 0.009 5 (4) + DSCT of SHIP 0.117 0.179 0.013 6 (5) + Baseline LSP Sum –0.346 0.284 <0.001 Outcome variables Model Variables added Final β R2 P-value K10 1 Age of carers –0.334 0.112 0.003 2 (1 ) + Gender of carers –0.035 0.113 0.011 3 (2 ) + Baseline LSP Bizarre –0.102 0.123 0.021 FSS 1 Age of carers 0.322 0.104 0.004 2 (1) + Gender of carers 0.011 0.104 0.016 MIVTIG 1 Age of carers –0.102 0.010 0.403 2 (1) + Gender of carers 0.058 0.014 0.632 3 (2) + Baseline LSP Sum –0.414 0.174 0.006 WHOQOL-BREF Physical 1 Age of carers –0.045 0.002 0.697 2 (1) + Gender of carers 0.065 0.006 0.790 3 (2) + Education of carers 0.214 0.052 0.267 4 (3) + Baseline LSP Anti-social 0.291 0.131 0.034 WHOQOL-BREF Psychological 1 Age of carers 0.213 0.045 0.061 2 (1) + Gender of carers 0.025 0.046 0.171 3 (2) + Education of carers –0.161 0.072 0.136 4 (3) + Baseline LSP Anti-social 0.307 0.160 0.012 5 (4) + Baseline LSP Self-care 0.201 0.189 0.009 WHOQOL-BREF Social 1 Age of carers 0.191 0.037 0.094 2 (1) + Gender of carers 0.093 0.045 0.177 3 (2) + Education of carers –0.211 0.089 0.073 4 (3) + Baseline LSP Bizarre 0.196 0.125 0.042 WHOQOL-BREF Environment 1 Age of carers 0.100 0.010 0.381 2 (1) + Gender of carers 0.107 0.021 0.443 3 (2) + Education of carers –0.006 0.022 0.655 IEQ Urging 1 Age of carers –0.315 0.099 0.005 2 (1) + Gender of carers –0.208 0.142 0.003 3 (2) + Education of carers –0.266 0.212 0.001 4 (3) + Baseline LSP Sum –0.193 0.245 0.000 IEQ Supervision 1 Age of carers –0.145 0.021 0.205 2 (1) + Gender of carers –0.131 0.038 0.232 3 (2) + Education of carers –0.279 0.114 0.029 4 (3) + DSCT of SHIP 0.222 0.163 0.010 5 (4) + Baseline LSP Sum –0.125 0.177 0.014 IEQ Tension 1 Age of carers –0.302 0.091 0.007 2 (1) + Gender of carers –0.055 0.094 0.024 3 (2) + Education of carers –0.153 0.117 0.026 4 (3) + DSCT of SHIP 0.107 0.128 0.038 5 (4) + Baseline LSP Sum –0.400 0.270 <0.001 IEQ Worrying 1 Age of carers –0.138 0.019 0.229 2 (1) + Gender of carers 0.000 0.019 0.488 3 (2) + Education of carers –0.155 0.042 0.360 4 (3) + Baseline LSP Sum –0.438 0.215 0.001 IEQ Sum 1 Age of carers –0.281 0.079 0.013 2 (1) + Gender of carers –0.119 0.093 0.026 3 (2) + Education of carers –0.252 0.155 0.006 4 (3) + Course of disorder of SHIP 0.105 0.166 0.009 5 (4) + DSCT of SHIP 0.117 0.179 0.013 6 (5) + Baseline LSP Sum –0.346 0.284 <0.001 Discussion Care-giving appears to impact several domains of carers’ health and well-being. The care-giving role is associated with poor psychological health, moderate levels of grief, diminished quality of life, social isolation and negative care-giving consequences such as worries and tension. As hypothesised, predictors of poor health and well-being were specific service user-related characteristics and care-giving factors. Functioning levels of people with psychosis, as assessed by their care-giver, were stronger predictors of carers’ health and well-being at follow-up than other factors including education of carers, and cognitive functioning and course of disorder of people with psychosis. Social connection of the carers Individuals caring for SHIP participants with poorer overall functioning (as measured by PSP and LSP-20) reported greater social isolation (as measured by FSS). One explanation for this is the additional burden and/or restrictions resulting from caring for someone with poor functioning abilities. In addition, one of the predictors of follow-up WHOQOL-BREF Social Relationships scores was baseline LSP Bizarre subscale scores. This suggested that, in order to cope with poor functioning abilities and behaviour related to positive psychotic symptoms such as hallucinations of their relative or friend, carers sacrificed their social activities, which resulted in them experiencing poor satisfaction with their social relationships. This pattern is consistent with the literature (Rosen et al., 2001; Veltman et al., 2002). Psychological health of the carers Those who cared for SHIP participants with poorer functioning as measured by LSP-20 reported poorer psychological health. The significant predictors of psychological health—LSP Anti-social and LSP Self-care—implied that carers were more affected psychologically by highly disruptive behaviour of people with psychosis and poor self-care skills than by other facets of functioning captured by the LSP. Furthermore, as most of the carers had frequent and close contact with their relative or friend with psychosis, such close proximity may have made it particularly challenging for carers to manage behaviour related to positive psychotic symptoms and anti-social characteristics, and poor self-care skills. Another explanation is that, due to the poor self-care functioning abilities and disruptive behaviours of some people with psychosis, their carers had to exercise closer care, leading to greater psychological distress. Feelings of grief in carers The correlations and predictors of MIVTIG scores with PSP and LSP-20 scores indicate that poorer functioning of the SHIP participants was related to greater grief in the carers. The findings from the current study add to the literature that the feelings of grief in carers are largely related to the perception of the carers concerning the poor functioning of their relatives with psychosis. The perceived deterioration in functioning probably reflects the loss of independent functioning skills and employability and an impaired societal role. This perception of the poor functioning levels of people with psychosis causes carers to experience long-term grief, with important consequences for interventions to address carers’ grief and functioning of people with psychosis. Negative care-giving consequences for the carers Lower functioning levels of the people with mental illness predicted greater care-giving consequences, which was consistent with other studies (Dyck et al., 1999; Roick et al., 2006; Hjärthag et al., 2010). In addition, a more chronic course of illness was found to predict greater care-giving consequences, thus showing the deterioration of functioning and the long-term effects of caring for someone with psychosis. Carers with higher education levels also experienced less negative care-giving impact than their counterparts with less education. It could be that more highly educated carers had more resources and coping abilities to manage the impact of care-giving than other carers which is consistent with other studies (Dyck et al., 1999; Poon et al., 2015). Physical health of the carers One of the predictors of the physical health of carers at follow-up was LSP Anti-social scores, indicating that caring for people living with psychosis characterised by hostility and uncooperativeness had a long-term impact on carers’ perceived physical health. The absence of other predictive factors and the small predictive effect of LSP suggest that a starting point to assess and potentially intervene to improve carer’s physical health is to consider the functioning of people with psychosis, especially hostility and uncooperative behaviour. Another approach would be to consider the carer’s health and well-being within a holistic assessment. (This aspect is discussed below under ‘Implications for recovery-oriented social work practice’.) Carers’ perception of the functioning level of their relatives with psychosis Although carers’ perception of the functioning levels of people with psychosis might be affected by their subjective levels of care-giving burden, our previously published findings showed that this mechanism was not likely to bias our results (Poon et al., 2017). Our findings suggested that carers’ perception of the functioning levels of the individual with psychosis for whom they cared influenced their social connectedness, grief and psychological health over time. The findings in the current report further support the notion that carers’ perceptions of their relative’s functioning are a predictor of their own health and well-being. Therefore, assessing carers’ perception of the functioning levels of those for whom they are caring is a key strategy in understanding carers’ health and well-being. As carers’ perception may be different from clinicians’ assessment of the functioning levels of people with psychosis (Hjärthag et al., 2012), it is important for carers to routinely complete a functioning questionnaire such as LSP to assess their perceptions more accurately. Although LSP is part of clinicians’ routine outcome assessments, greater efforts are required for clinicians to evaluate outcome and recovery of carers in routine practice as recommended in the guidelines of the Australian National Mental Health Strategy, which could be usefully informed by LSP completion (Australian Health Ministers’ Advisory Council, 2013b). Implications for recovery-oriented social work practice There are some significant contributions to social work practice from this study. This population-based study supports evidence that social workers need to work with carers of people with psychosis more intensively to support recovery (Tew et al., 2012; Webber and Joubert, 2015). Social workers may use family psycho-education programmes to improve the functioning and well-being of carers (Lucksted et al., 2012). Within community mental health services, social workers can consider providing more therapeutic interventions to carers within their roles as case managers (Wilson and Kirwan, 2007) and involve both carers and service users collaboratively in service users’ care plans (Simpson et al., 2016). Social workers also have a crucial role in raising awareness in their multidisciplinary teams concerning the importance of supporting the recovery of carers and may provide leadership to facilitate the recovery of carers with complex needs. Recognising the importance of unique recovery journeys and therapeutic relationships (Simpson et al., 2016), social workers can facilitate discussion with individual families and their relative with illness, to support them to find meaning and hope despite the impact of the illness (Wyder and Bland, 2014; Fox et al., 2015). Our findings of multiple service user-carer predictive factors confirmed the importance of social workers’ holistic assessment (Watts and Hodgson, 2016). Referring to the conceptual recovery framework by Wyder and Bland (2014), our findings show that carers of people with psychosis continued to experience poor health and well-being, and care-giving burden over time (Poon et al., 2017), implying that most carers are not progressing well in their recovery journey and more can be done by workers to promote carers’ unique and personal recovery process (Lavis et al., 2015). The finding that functioning levels of people with psychosis affects carers’ health and well-being provides support for recovery-oriented social work in providing and advocating for psycho-social rehabilitation in mental health (Shankar et al., 2009; Lukens and Solomon, 2013). It is important for social workers to embrace psycho-social rehabilitation and recovery as key components of the core body of knowledge of the profession (Fox et al., 2015) and to consider providing psycho-social rehabilitation activities (Shankar et al., 2009; Lukens and Solomon, 2013). In line with the Australian Mental Health Plan (Commonwealth of Australia, 2009) which arguably has not been fully implemented (Roberts, 2011), our study suggests that the discussion of relevant psycho-social rehabilitation activities with people with psychosis would ideally involve their carers as well, since carers’ perception of the functioning levels of their relatives is important in the recovery process of both people with psychosis and their carers collectively. Given that the only significant change in carers’ health and well-being over time in this study was in their physical health satisfaction, social workers need to consider the importance of including physical health assessments of carers in their work. Social workers need to use their knowledge of community health services and make appropriate referral to services that may support physical well-being of carers as a critical component of their responses to clients. Furthermore, particular attention needs to be given to assess the physical health of those carers who are caring for people with more hostile and uncooperative behaviours. In general, social workers do not focus on physical health, although physical health is critical in the recovery process of individuals (Australian Health Ministers’ Advisory Council, 2013a). Social workers emphasise biopsychosocial assessment and interventions in their approach but they do not always consider physical health functioning of carers in their practice. As carers usually put the needs of their relatives first and neglect their own health, social workers can empower carers to consider their own well-being (Wyder and Bland, 2014), cultivate a healthy lifestyle and seek help for their own physical health problems. In addition, assessment tools, such as the WHOQOL-BREF Physical Health domain (WHOQOL Group, 1998) might be helpful for social workers to assess carers’ physical health satisfaction in order to facilitate discussion in managing physical well-being and refer them to appropriate health services. Strengths and limitations One of the strengths of this study was the recruitment of carers within a formal sampling framework. Therefore, the findings of this study are likely to be more representative of carers than other care-giving studies that used convenience sampling. The other strength of this study was the availability of longitudinal results which provided some knowledge of prediction of carers’ health and well-being over time. This study also had access to extensive service user-related information obtained from the SHIP study. This provided additional knowledge of service user-related characteristics influencing carers’ health and well-being. The first limitation of the study, which may have prevented some predictors from being identified within the two occasions of measurement, was that the follow-up interview was only one year from baseline recruitment. The second limitation is that the study did not assess types of informal social support affecting the health and well-being of carers. Social support was assessed indirectly using the Friendship Scale and WHOQOL-BREF Social Relationships. This care-giving study did not focus on ethnicity of carers, as most of the SHIP participants were born in Australia, limiting the number of carers from culturally and linguistically diverse communities. Another thing to note is that LSP findings in this study referred to carers’ perceptions: future studies might consider using more rigorous ways of measuring functioning levels, such as observational assessment of performance of specific tasks of daily living by people with psychosis, to compare these with carers’ perceptions. Conclusion The recovery concept is important in mental health services but the provision of psycho-social rehabilitation services is also essential to facilitate recovery in people with mental illness (Anthony, 1993; Killackey et al., 2014). The challenge for services is to review the current provision of psycho-social rehabilitation services and provide such services to support both the person with mental illness and to focus, in addition, on the needs of the carer (Crombie et al., 2007). More importantly, the goal of recovery should not only be the improvement of the outcome and quality of life of people experiencing psychosis, but should promote improvements of outcomes and quality of life for both people with psychosis and for their carers. This could constitute a shift of emphasis for social workers who currently include carers in their assessment and response, but as part of their psycho-social rehabilitation intervention with the client. Our findings also provide some evidence for social work’s potential contribution to the physical health of carers and supporting them in the recovery process while working with people with psychosis (Tew et al., 2012). Acknowledgements This publication is based on data collected in the framework of the 2010 Australian National Survey of High Impact Psychosis. In 2010, the members of the Survey of High Impact Psychosis Study Group were: V. Morgan (National Project Director), A. Jablensky (Chief Scientific Advisor), A. Waterreus (National Project Coordinator), R. Bush, V. Carr, D. Castle, M. Cohen, C. Galletly, C. Harvey, B. Hocking, A. Mackinnon, P. McGorry, J. McGrath, A. Neil, S. Saw and H. Stain. Ethics approvals for the study were obtained from relevant institutional human research ethics committees. The study was funded by the Australian Government Department of Health and Ageing. This report acknowledges, with thanks, the hundreds of mental health professionals who participated in the preparation and conduct of the survey and the many Australians with psychotic disorders and their care-givers who gave their time and whose responses form the basis of this publication. References Anthony W. A. 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All rights reserved. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png The British Journal of Social Work Oxford University Press

Recovery for Carers of People with Psychosis: A Longitudinal Population-Based Study with Implications for Social Work

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Oxford University Press
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© The Author 2017. Published by Oxford University Press on behalf of The British Association of Social Workers. All rights reserved.
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0045-3102
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1468-263X
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10.1093/bjsw/bcx120
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Abstract

Abstract This longitudinal study using the sampling frame of the second Australian prevalence study of psychosis aimed to identify predictors of the health and well-being of care-givers of people with psychosis and inform social work recovery-oriented practice. Ninety-eight carers were recruited at baseline and seventy-eight re-interviewed after one year. Correlational and regression analyses were conducted to identify relationships between carer and service user-related factors and predictors of carers’ health and well-being over time. Carers’ poor health and well-being were predicted by a combination of specific service user-related characteristics and care-giving factors. Carers’ assessment of the functioning of their relative/friend with psychosis at baseline had stronger relationships with their own health and well-being at follow-up than other factors. Carers’ care-giving burden was predicted by their educational levels and their relative/friend’s cognitive levels over time. To achieve improved health and well-being for carers, services need to consider potential deterioration of carers’ physical health over time, to facilitate appropriate referral of carers with physical health problems and provide psycho-social rehabilitation services to improve the functioning of people with psychosis. Findings provide some evidence to support social work recovery-oriented practice in working with people with psychosis and the routine inclusion of carers in such interventions. Carers, psychotic disorders, population-based, physical health, recovery Introduction Social workers have played a significant role in working with families and care-givers of people treated within mental health services but there is a lack of evidence on effective social work interventions to meet the needs of care-givers (Tew et al., 2012; Fox et al., 2015). Social work emphasises the importance of the relationship between the person with mental illness and their world, including family members and carers (Bland et al., 2015). Social work in mental health has remained focused on core social work knowledge such as person-in-environment approaches (Green and McDermott, 2010). The contributions of social work practice in mental health are in addressing how the environment of the person with mental illness may influence the illness, and how the illness may affect the person, family and communities (Bland et al., 2015). In mental health, several care-giving theories and models were developed in the 1990s to address the complexity of the care-giving impact. An early theory proposed that carers of people with mental illness experience objective and subjective burdens as a result of their role (Hoenig and Hamilton, 1966). Due to the difficulties in measuring care-giving burden and the recognition of the importance of carers’ appraisal of their care-giving experience, a stress-coping model was developed (Szmukler et al., 1996). A more recent model describes the connection between the cognitive process of appraisal and reactions of carers and the provision of mental health services (Kuipers et al., 2010). Although these models described the importance of carers’ appraisal of their experience, they did not provide evidence to support recovery-oriented social work practice in working with both persons with mental illness and their families. Recently, the principles of recovery have been increasingly evident as part of formal mental health policy but they have not been as widely implemented in mental health services as anticipated (Simpson et al., 2016). Recovery refers to a unique and personal journey of people affected by mental illness, including carers, to find new meaning and purpose (Anthony, 1993; Webber and Joubert, 2015), while psycho-social rehabilitation refers to the provision of interventions to support improved functioning, community integration, quality of life and recovery of people impacted by mental illness (Pratt et al., 1999). Many have argued that there has been a lack of progress in provision of psycho-social rehabilitation services with the potential to support recovery of those with the most complex mental health needs (Whiteford et al., 2002). More importantly, despite carers’ contribution to positive outcomes for their relatives or friends with mental illness, recovery-informed practice has centred on people with mental illness and largely overlooked carers’ recovery (Hungerford and Richardson, 2013). The increasing emphasis on recovery of people with mental illness has presented new opportunities as well as challenges for social workers to extend their work in supporting the recovery of carers (Wilson and Kirwan, 2007; Wyder and Bland, 2014; Fox et al., 2015). Care-giving burden, distress and experiences Research has shown that care-givers of people with psychosis experience predominantly negative effects such as psychological distress, trauma and aggression, and carer burden (Hjärthag et al., 2010; Hayes et al., 2015; Jansen et al., 2015). Longitudinal studies provide further evidence that more severe psychotic symptoms (Parabiaghi et al., 2007), lack of psychiatric services for continuous treatment (Roick et al., 2006) and magnitude of carer burden at baseline itself (Parabiaghi et al., 2007) were strong predictors of long-term carer burden. However, the results of most care-giving studies cannot be readily generalised to understand the recovery process of carers due to small sample sizes (Parabiaghi et al., 2007; Møller et al., 2009) and convenience-sample recruitment of carers from psychiatric services or family intervention programmes (Roick et al., 2006; Hjärthag et al., 2010; Stephens et al., 2011). The current study was conducted in the context of the second Australian prevalence study of psychotic disorders, the Survey of High Impact Psychosis (SHIP), in order to obtain more generalisable results regarding carers to provide evidence-based findings to inform social work recovery-oriented practice in mental health. A report of this population-based study was previously published showing that carers’ health and well-being did not improve over time and that their perceived physical health deteriorated in the course of just one year (Poon et al., 2017). The current paper sought to examine the relationships between illness-related factors and carer’s health and well-being over a one-year period, and identify predictors of carer’s health and well-being over time. The hypothesis was that care-givers’ health and well-being would be predicted by a combination of carer factors and by their relatives’ illness-related factors. Method Overview of the second Australian prevalence study of psychosis The second Australian prevalence study of psychosis was conducted in seven sites in 2010 and randomly selected people who screened positive for psychosis to participate in an in-depth interview. The SHIP recruitment method and principal service user-based findings can be found in an earlier publication (Morgan et al., 2012). Participants and procedure The first author contacted the SHIP participants and their carers from the two Victorian SHIP recruitment sites and sought their written consent to participate in this study. A validated, structured questionnaire was mailed to the carers or used in face-to-face interviews. One year later, the first author re-contacted these carers for a follow-up interview. The study recruited ninety-eight carers at baseline and re-interviewed seventy-eight of them at follow-up between August 2010 and August 2013. The full procedures and recruitment can be found in the earlier publication (Poon et al., 2017). The study was approved by Melbourne Health (Reference: 2010.011), St Vincent’s Hospital (Melbourne) (Reference: 111/11) and the University of Melbourne (Reference: 1034494.1) Human Research Ethics Committees. Sample size A sample size of 100 was calculated: (i) based on alpha of 0.05 (which is the traditional level of statistical significance), (ii) power was set at 0.80 (as recommended for behavioural research in Green (1991)) and (iii) effect size (f2) was calculated as 0.15 based on correlation coefficient (R2) of 0.13. The choice of a moderate effect size (f2 = 0.15; R2 = 0.13) was a conservative estimate based on the contrasting results concerning predictors of care-giver burden in the literature. This sample size could accommodate up to five predictors in a regression model and test both the correlation coefficient and individual predictors assuming moderate-sized effects (Green, 1991). Measures A number of validated, standardised questionnaires to assess carers’ health and well-being were used, based on several reviews of the impact of care-giving (Ohaeri, 2003; Awad and Voruganti, 2008). The social connectedness of the carers was measured using the Friendship Scale (FSS) (Hawthorne, 2006). Lower scores on FSS indicated greater social isolation. The Kessler-10 (K10) was used to measure psychological distress in the carers and higher scores indicated greater psychological distress (Kessler et al., 2002). The Mental Illness Version of the Texas Inventory of Grief (MIVTIG) is a validated and widely used scale to measure feelings of grief in care-givers of people with mental illness (Miller et al., 1990). The MIVTIG was used for this purpose and higher scores indicated more prominent grief. The World Health Organisation Quality of Life BREF (WHOQOL-BREF) was used to measure the perceived quality of life of the carers in four domains: Physical Health, Psychological Health, Social Relationships and Environment, and lower scores indicated poorer satisfaction concerning their quality of life (WHOQOL Group, 1998). The Involvement Evaluation Questionnaire (IEQ) was used to measure the care-giving consequences experienced by the carers and higher scores indicated greater care-giving consequences (van Wijngaarden et al., 2000). The IEQ yields a total score and four subscales: Tension, Supervision, Worrying and Urging. Tension refers to the strained inter-personal atmosphere between the carer and the person with mental illness. Supervision refers to the tasks performed by the carer in looking after the person with mental illness. Worry refers to painful inter-personal cognitions of the carer’s concerns about the person with mental illness. Urging refers to activating and motivating the person with mental illness to do some tasks. Carers also completed the Life Skills Profile-20 (LSP-20) which was used to assess the functioning of their relative or friend with psychosis (Rosen et al., 2001). The LSP-20 covers five areas of functioning: Self-care, Anti-social, Withdrawal, Bizarre and Compliance, and higher scores indicate better functioning. Service user-related factors and socio-demographic characteristics of the SHIP participants were obtained from the SHIP interviews. The International Classification of Diseases 10th Revision diagnoses for mental disorders experienced by the SHIP participants were derived using the Diagnostic Interview for Psychosis (Castle et al., 2006). Their current cognitive functioning was assessed using the Digit Symbol Coding Test (DSCT) (Randolph et al., 1998) and their overall functioning was estimated using the Personal and Social Performance Scale (PSP) (Morosini et al., 2000). The course of illness was categorised as a single episode; multiple episodes of acute illness with partial/good recovery; continuous, chronic course with/without deterioration (Morgan et al., 2012). Statistical analysis Statistical analyses examined correlations between carer variables and service user-related characteristics. The course of mental disorder variable was collapsed into three categories: single episode, multiple episodes and continuous chronic illness, as some categories had few cases. The carers’ highest attained education levels were collapsed into three categories: primary, secondary and tertiary, as there were few cases in each of the subcategories in the tertiary education level. Pearson correlation was used for variables with normal distributions, Spearman’s rho (rs) was used for variables with other distributions and one-way ANOVA was used for categorical predictors. Multiple linear regression analysis was conducted for follow-up outcome variables that were shown to have statistically significant relationships with baseline explanatory variables that might predict changes in the follow-up outcome variable scores. In regression models, carers’ age and gender were first added to the equation followed by baseline explanatory variables. Predictors were added incrementally to evaluate any significant improvement in prediction of follow-up outcome variable scores. The data were analysed using SPSS version 21 (IBM Corp., 2012). Results Socio-demographic characteristics of carers The mean age of carers was 57.1 years (SD = 12.1) and most (76 per cent) were female. A higher percentage of them (n = 58, 59 per cent) were married or in a de facto relationship than never married (n=10, 10 per cent), divorced or separated (n=26, 27 per cent) or widowed (n=4, 4 per cent). The highest level of education attained by the carers was: primary education (n=8, 8 per cent), secondary education (n=32, 33 per cent) and tertiary education (n=58, 59 per cent). Most of them were employed (n=62, 63 per cent), followed by not in labour force (n=32, 33 per cent) and unemployed (n=4, 4 per cent). Socio-demographic characteristics of SHIP participants Most of the SHIP participants in this study (n=98) were male (65 per cent) and their median age was 33.0 years (range = 18–62). A large percentage of them were single (n=71, 72 per cent), followed by married or in a de facto relationship (n=17, 17 per cent), divorced or separated (n=9, 9 per cent) and widowed (n=1, 1 per cent). The highest level of education attained by the SHIP participants was: left school without a certificate (n=23, 24 per cent), secondary (n=22, 22 per cent), trade certificate (n=30, 31 per cent) and tertiary (n=23, 24 per cent). For employment status, 47 per cent of them were unemployed, 44 per cent were employed and the rest were fulfilling home duties, caring for someone, volunteering or studying in the last twelve months. Nature of care-giving relationships Three-fifths (n=61, 62 per cent) of the carers were parents, followed by spouses/partners (n=15, 15 per cent), siblings (n=11, 11 per cent), friends (n=7, 7 per cent) and others (n=4, 4 per cent). Most (93 per cent) of the spouses/partners were living with the person with psychosis compared to around half (48 per cent) of the parents. Those carers who were not living with the SHIP participants maintained close relationships by at least weekly phone (77 per cent) and face-to-face (67 per cent) contacts. The number of years caring for the SHIP participant was highly varied (median = 4.0, range = 2.0–30.0 years). Correlations between demographic factors of carers with carers’ health and well-being characteristics The age of the carers was negatively correlated with K10 scores (rs = –0.214, p=0.034) and positively correlated with WHOQOL Psychological Health (rs=0.237, p=0.019) indicating that older carers were likely to have better psychological health. The carers’ education level was statistically associated with WHOQOL-BREF Physical Health (F(2,95)=8.915, p < 0.001): primary (mean=21.0, SD=5.04, 95%CI=16.8, 25.2, n=8), secondary (mean=28.1, SD=4.25, 95%CI=26.5, 29.6, n=32) and tertiary (mean=27.8, SD=4.46, 95%CI=26.6, 29.0, n=58). Carers’ education level was also statistically associated with Sum IEQ (F(2,95)=3.401, p=0.037), IEQ Supervision (F(2,95)=3.967, p=0.022) and IEQ Urging (F(2,95)=4.888, p=0.010). Carers with a higher education level were likely to report better quality of life regarding physical health; were less likely to attempt to persuade their relative or friend with psychosis to undertake activities; were less likely to supervise the behaviour of those for whom they were caring; and were less likely to experience substantial negative care-giving impact. Correlations between demographic and service user-related factors of SHIP participants with carers’ health and well-being characteristics Age of the SHIP participants was positively correlated with their carers’ WHOQOL-BREF Psychological Health (rs=0.237, p=0.019) indicating that carers of older people with psychosis were likely to have better psychological health. Type of mental disorder had a statistically significant relationship with WHOQOL-BREF Physical Health (F(5,92)=2.903, p=0.018). Carers of people with schizoaffective (mean=64.1, SD=19.3, 95%CI=54.2, 74.0, n=17) and bipolar disorders (mean=66.3, SD=17.2, 95%CI=58.5, 74.2, n=21) had poorer physical health satisfaction than carers of people with schizophrenia (mean=76.6, SD=15.6, 95%CI=71.7, 81.5, n=21) and severe depression without psychosis (mean=75.6, SD=13.0, 95%CI=67.7, 83.4, n=13). This finding was further explored to identify possible explanations for the relationship between type of mental disorder and carers’ physical health satisfaction. The type of mental disorder was found to be associated with the education level of carers (χ2=39.30, df=1, p=0.034), with a higher percentage of carers of people with schizophrenia (n=17 of 41, 42 per cent) and severe depression without psychosis (n=5 of 13, 39 per cent) having secondary schooling as their highest level of education. DSCT scores, which indicated the current cognitive functioning of the SHIP participants, were statistically significantly correlated with their carers’ IEQ Tension scores (r=0.205, p=0.044, n=97) and IEQ Supervision scores (r=0.208, p=0.040, n=97). Care-givers of people who had higher current cognitive functioning were more likely to experience increased tension and more likely to supervise the behaviour of their relatives or friends. This finding was also further explored to identify possible explanations for this relationship. DSCT scores were found to be negatively correlated with age of the SHIP participants (r=–0.239, p=0.018, n=97), indicating that older SHIP participants had lower cognitive functioning. PSP scores, which measure functioning levels of the SHIP participants, were positively correlated with their carers’ Friendship Scale scores (r=0.245, p=0.015) and negatively correlated with the MIVTIG scores (r=–0.289, p=0.005, n=93), IEQ Worrying scores (r=–0.243, p=0.016), IEQ Urging scores (r=–0.245, p=0.015) and IEQ Sum scores (r=–0.232, p=0.022). Care-givers of SHIP participants with higher personal and social performance were likely to be more socially connected; had less grief; urged those for whom they were caring less; had less worry; and experienced less care-giving impact. The LSP-20 scores, which were reported by carers, showed that functioning levels were highly correlated with carers’ outcome variables (Table 1). The care-givers were likely to experience greater psychological distress, greater social isolation, worse grief, poorer quality of life and greater care-giving consequences when those for whom they were caring had poorer functioning as perceived by carers themselves. Table 1 Baseline correlations of LSP scores with carers’ outcome variables scores LSP Bizarre LSP Self-care LSP Anti-social LSP Withdrawal LSP Compliance LSP Sum FSS rs 0.296 0.211 0.276 0.146 0.168 0.275 P 0.003* 0.037* 0.006* 0.152 0.099 0.006* K10 rs –0.319 –0.211 –0.297 –0.177 –0.251 –0.348 P 0.001* 0.037* 0.003* 0.081 0.013* <0.001* MIVTIG rs –0.397 –0.327 –0.299 –0.290 –0.307 –0.404 P <0.001* 0.001* 0.004* 0.005* 0.030* <0.001* WHOQOL-BREF Physical rs 0.246 0.190 0.167 –0.008 0.112 0.134 P 0.015* 0.061 0.100 0.936 0.273 0.188 WHOQOL-BREF Psychological r 0.224 0.275 0.328 0.199 0.210 0.314 P 0.027* 0.006* 0.001* 0.050* 0.039* 0.002* WHOQOL-BREF Social r 0.302 0.281 0.416 0.133 0.238 0.349 P 0.003* 0.005* <0.001* 0.193 0.019* <0.001* WHOQOL-BREF Environment r 0.211 0.186 0.214 0.120 0.255 0.236 P 0.037* 0.067 0.034* 0.241 0.012* 0.019* IEQ Urging r –0.207 –0.253 –0.159 –0.310 –0.205 –0.277 P 0.041* 0.012* 0.118 0.002* 0.044* 0.006* IEQ Supervision rs –0.255 –0.209 –0.225 –0.157 –0.248 –0.263 P 0.011* 0.039* 0.026* 0.123 0.014* 0.009* IEQ Tension rs –0.464 –0.415 –0.606 –0.347 –0.447 –0.584 P <0.001* <0.001* <0.001* <0.001* <0.001* <0.001* IEQ Worrying r –0.390 –0.478 –0.482 –0.350 –0.418 –0.530 P <0.001* <0.001* <0.001* <0.001* <0.001* <0.001* IEQ Sum r –0.348 –0.369 –0.391 –0.318 –0.368 –0.444 P <0.001* <0.001* <0.001* 0.001* <0.001* <0.001* LSP Bizarre LSP Self-care LSP Anti-social LSP Withdrawal LSP Compliance LSP Sum FSS rs 0.296 0.211 0.276 0.146 0.168 0.275 P 0.003* 0.037* 0.006* 0.152 0.099 0.006* K10 rs –0.319 –0.211 –0.297 –0.177 –0.251 –0.348 P 0.001* 0.037* 0.003* 0.081 0.013* <0.001* MIVTIG rs –0.397 –0.327 –0.299 –0.290 –0.307 –0.404 P <0.001* 0.001* 0.004* 0.005* 0.030* <0.001* WHOQOL-BREF Physical rs 0.246 0.190 0.167 –0.008 0.112 0.134 P 0.015* 0.061 0.100 0.936 0.273 0.188 WHOQOL-BREF Psychological r 0.224 0.275 0.328 0.199 0.210 0.314 P 0.027* 0.006* 0.001* 0.050* 0.039* 0.002* WHOQOL-BREF Social r 0.302 0.281 0.416 0.133 0.238 0.349 P 0.003* 0.005* <0.001* 0.193 0.019* <0.001* WHOQOL-BREF Environment r 0.211 0.186 0.214 0.120 0.255 0.236 P 0.037* 0.067 0.034* 0.241 0.012* 0.019* IEQ Urging r –0.207 –0.253 –0.159 –0.310 –0.205 –0.277 P 0.041* 0.012* 0.118 0.002* 0.044* 0.006* IEQ Supervision rs –0.255 –0.209 –0.225 –0.157 –0.248 –0.263 P 0.011* 0.039* 0.026* 0.123 0.014* 0.009* IEQ Tension rs –0.464 –0.415 –0.606 –0.347 –0.447 –0.584 P <0.001* <0.001* <0.001* <0.001* <0.001* <0.001* IEQ Worrying r –0.390 –0.478 –0.482 –0.350 –0.418 –0.530 P <0.001* <0.001* <0.001* <0.001* <0.001* <0.001* IEQ Sum r –0.348 –0.369 –0.391 –0.318 –0.368 –0.444 P <0.001* <0.001* <0.001* 0.001* <0.001* <0.001* * , significant; rs, Spearman’s rho correlation; r, Pearson correlation. n=98 except for MIVTIG (n=93) and Compliance subscale (n=97). Table 1 Baseline correlations of LSP scores with carers’ outcome variables scores LSP Bizarre LSP Self-care LSP Anti-social LSP Withdrawal LSP Compliance LSP Sum FSS rs 0.296 0.211 0.276 0.146 0.168 0.275 P 0.003* 0.037* 0.006* 0.152 0.099 0.006* K10 rs –0.319 –0.211 –0.297 –0.177 –0.251 –0.348 P 0.001* 0.037* 0.003* 0.081 0.013* <0.001* MIVTIG rs –0.397 –0.327 –0.299 –0.290 –0.307 –0.404 P <0.001* 0.001* 0.004* 0.005* 0.030* <0.001* WHOQOL-BREF Physical rs 0.246 0.190 0.167 –0.008 0.112 0.134 P 0.015* 0.061 0.100 0.936 0.273 0.188 WHOQOL-BREF Psychological r 0.224 0.275 0.328 0.199 0.210 0.314 P 0.027* 0.006* 0.001* 0.050* 0.039* 0.002* WHOQOL-BREF Social r 0.302 0.281 0.416 0.133 0.238 0.349 P 0.003* 0.005* <0.001* 0.193 0.019* <0.001* WHOQOL-BREF Environment r 0.211 0.186 0.214 0.120 0.255 0.236 P 0.037* 0.067 0.034* 0.241 0.012* 0.019* IEQ Urging r –0.207 –0.253 –0.159 –0.310 –0.205 –0.277 P 0.041* 0.012* 0.118 0.002* 0.044* 0.006* IEQ Supervision rs –0.255 –0.209 –0.225 –0.157 –0.248 –0.263 P 0.011* 0.039* 0.026* 0.123 0.014* 0.009* IEQ Tension rs –0.464 –0.415 –0.606 –0.347 –0.447 –0.584 P <0.001* <0.001* <0.001* <0.001* <0.001* <0.001* IEQ Worrying r –0.390 –0.478 –0.482 –0.350 –0.418 –0.530 P <0.001* <0.001* <0.001* <0.001* <0.001* <0.001* IEQ Sum r –0.348 –0.369 –0.391 –0.318 –0.368 –0.444 P <0.001* <0.001* <0.001* 0.001* <0.001* <0.001* LSP Bizarre LSP Self-care LSP Anti-social LSP Withdrawal LSP Compliance LSP Sum FSS rs 0.296 0.211 0.276 0.146 0.168 0.275 P 0.003* 0.037* 0.006* 0.152 0.099 0.006* K10 rs –0.319 –0.211 –0.297 –0.177 –0.251 –0.348 P 0.001* 0.037* 0.003* 0.081 0.013* <0.001* MIVTIG rs –0.397 –0.327 –0.299 –0.290 –0.307 –0.404 P <0.001* 0.001* 0.004* 0.005* 0.030* <0.001* WHOQOL-BREF Physical rs 0.246 0.190 0.167 –0.008 0.112 0.134 P 0.015* 0.061 0.100 0.936 0.273 0.188 WHOQOL-BREF Psychological r 0.224 0.275 0.328 0.199 0.210 0.314 P 0.027* 0.006* 0.001* 0.050* 0.039* 0.002* WHOQOL-BREF Social r 0.302 0.281 0.416 0.133 0.238 0.349 P 0.003* 0.005* <0.001* 0.193 0.019* <0.001* WHOQOL-BREF Environment r 0.211 0.186 0.214 0.120 0.255 0.236 P 0.037* 0.067 0.034* 0.241 0.012* 0.019* IEQ Urging r –0.207 –0.253 –0.159 –0.310 –0.205 –0.277 P 0.041* 0.012* 0.118 0.002* 0.044* 0.006* IEQ Supervision rs –0.255 –0.209 –0.225 –0.157 –0.248 –0.263 P 0.011* 0.039* 0.026* 0.123 0.014* 0.009* IEQ Tension rs –0.464 –0.415 –0.606 –0.347 –0.447 –0.584 P <0.001* <0.001* <0.001* <0.001* <0.001* <0.001* IEQ Worrying r –0.390 –0.478 –0.482 –0.350 –0.418 –0.530 P <0.001* <0.001* <0.001* <0.001* <0.001* <0.001* IEQ Sum r –0.348 –0.369 –0.391 –0.318 –0.368 –0.444 P <0.001* <0.001* <0.001* 0.001* <0.001* <0.001* * , significant; rs, Spearman’s rho correlation; r, Pearson correlation. n=98 except for MIVTIG (n=93) and Compliance subscale (n=97). Predictors of follow-up outcome variables The predictors of carers’ psychological health, quality of life, grief, social connectedness and care-giving consequences were found to be associated with both service user-related factors and carer demographics (Table 2). Significant predictors of K10 scores were gender and age of the carers, and baseline LSP Bizarre scores; predictors of FSS scores were age and gender of carers; and predictors of MIVTIG scores were baseline LSP Sum scores. Predictors of WHOQOL Physical health scores were baseline LSP Anti-social; Psychological health scores were baseline LSP Anti-social and Self-care; and Social relationships scores were baseline LSP Bizarre. Predictors of IEQ Urging scores were age, gender and education of carers, and baseline LSP Sum; Supervision scores were education of carers, DSCT scores and baseline LSP Sum scores; Tension scores were age, gender and education of carers, DSCT scores and baseline LSP Sum scores; Worrying scores were baseline LSP Sum scores; and IEQ Sum scores were age, gender and education of carers, course of disorder, DSCT scores and baseline LSP Sum scores. Total predictive effects (R2) of the variables were relatively modest. Summarising these, the service user-related factors identified were: course of mental disorder, current cognitive functioning (as measured by DSCT scores) and functioning level (as perceived by carers using LSP). Carer variables identified included age, gender and educational attainment. Table 2 Standard beta weights and incremental R2 for predictors of follow-up care-giving outcome variables in multiple regression analyses Outcome variables Model Variables added Final β R2 P-value K10 1 Age of carers –0.334 0.112 0.003 2 (1 ) + Gender of carers –0.035 0.113 0.011 3 (2 ) + Baseline LSP Bizarre –0.102 0.123 0.021 FSS 1 Age of carers 0.322 0.104 0.004 2 (1) + Gender of carers 0.011 0.104 0.016 MIVTIG 1 Age of carers –0.102 0.010 0.403 2 (1) + Gender of carers 0.058 0.014 0.632 3 (2) + Baseline LSP Sum –0.414 0.174 0.006 WHOQOL-BREF Physical 1 Age of carers –0.045 0.002 0.697 2 (1) + Gender of carers 0.065 0.006 0.790 3 (2) + Education of carers 0.214 0.052 0.267 4 (3) + Baseline LSP Anti-social 0.291 0.131 0.034 WHOQOL-BREF Psychological 1 Age of carers 0.213 0.045 0.061 2 (1) + Gender of carers 0.025 0.046 0.171 3 (2) + Education of carers –0.161 0.072 0.136 4 (3) + Baseline LSP Anti-social 0.307 0.160 0.012 5 (4) + Baseline LSP Self-care 0.201 0.189 0.009 WHOQOL-BREF Social 1 Age of carers 0.191 0.037 0.094 2 (1) + Gender of carers 0.093 0.045 0.177 3 (2) + Education of carers –0.211 0.089 0.073 4 (3) + Baseline LSP Bizarre 0.196 0.125 0.042 WHOQOL-BREF Environment 1 Age of carers 0.100 0.010 0.381 2 (1) + Gender of carers 0.107 0.021 0.443 3 (2) + Education of carers –0.006 0.022 0.655 IEQ Urging 1 Age of carers –0.315 0.099 0.005 2 (1) + Gender of carers –0.208 0.142 0.003 3 (2) + Education of carers –0.266 0.212 0.001 4 (3) + Baseline LSP Sum –0.193 0.245 0.000 IEQ Supervision 1 Age of carers –0.145 0.021 0.205 2 (1) + Gender of carers –0.131 0.038 0.232 3 (2) + Education of carers –0.279 0.114 0.029 4 (3) + DSCT of SHIP 0.222 0.163 0.010 5 (4) + Baseline LSP Sum –0.125 0.177 0.014 IEQ Tension 1 Age of carers –0.302 0.091 0.007 2 (1) + Gender of carers –0.055 0.094 0.024 3 (2) + Education of carers –0.153 0.117 0.026 4 (3) + DSCT of SHIP 0.107 0.128 0.038 5 (4) + Baseline LSP Sum –0.400 0.270 <0.001 IEQ Worrying 1 Age of carers –0.138 0.019 0.229 2 (1) + Gender of carers 0.000 0.019 0.488 3 (2) + Education of carers –0.155 0.042 0.360 4 (3) + Baseline LSP Sum –0.438 0.215 0.001 IEQ Sum 1 Age of carers –0.281 0.079 0.013 2 (1) + Gender of carers –0.119 0.093 0.026 3 (2) + Education of carers –0.252 0.155 0.006 4 (3) + Course of disorder of SHIP 0.105 0.166 0.009 5 (4) + DSCT of SHIP 0.117 0.179 0.013 6 (5) + Baseline LSP Sum –0.346 0.284 <0.001 Outcome variables Model Variables added Final β R2 P-value K10 1 Age of carers –0.334 0.112 0.003 2 (1 ) + Gender of carers –0.035 0.113 0.011 3 (2 ) + Baseline LSP Bizarre –0.102 0.123 0.021 FSS 1 Age of carers 0.322 0.104 0.004 2 (1) + Gender of carers 0.011 0.104 0.016 MIVTIG 1 Age of carers –0.102 0.010 0.403 2 (1) + Gender of carers 0.058 0.014 0.632 3 (2) + Baseline LSP Sum –0.414 0.174 0.006 WHOQOL-BREF Physical 1 Age of carers –0.045 0.002 0.697 2 (1) + Gender of carers 0.065 0.006 0.790 3 (2) + Education of carers 0.214 0.052 0.267 4 (3) + Baseline LSP Anti-social 0.291 0.131 0.034 WHOQOL-BREF Psychological 1 Age of carers 0.213 0.045 0.061 2 (1) + Gender of carers 0.025 0.046 0.171 3 (2) + Education of carers –0.161 0.072 0.136 4 (3) + Baseline LSP Anti-social 0.307 0.160 0.012 5 (4) + Baseline LSP Self-care 0.201 0.189 0.009 WHOQOL-BREF Social 1 Age of carers 0.191 0.037 0.094 2 (1) + Gender of carers 0.093 0.045 0.177 3 (2) + Education of carers –0.211 0.089 0.073 4 (3) + Baseline LSP Bizarre 0.196 0.125 0.042 WHOQOL-BREF Environment 1 Age of carers 0.100 0.010 0.381 2 (1) + Gender of carers 0.107 0.021 0.443 3 (2) + Education of carers –0.006 0.022 0.655 IEQ Urging 1 Age of carers –0.315 0.099 0.005 2 (1) + Gender of carers –0.208 0.142 0.003 3 (2) + Education of carers –0.266 0.212 0.001 4 (3) + Baseline LSP Sum –0.193 0.245 0.000 IEQ Supervision 1 Age of carers –0.145 0.021 0.205 2 (1) + Gender of carers –0.131 0.038 0.232 3 (2) + Education of carers –0.279 0.114 0.029 4 (3) + DSCT of SHIP 0.222 0.163 0.010 5 (4) + Baseline LSP Sum –0.125 0.177 0.014 IEQ Tension 1 Age of carers –0.302 0.091 0.007 2 (1) + Gender of carers –0.055 0.094 0.024 3 (2) + Education of carers –0.153 0.117 0.026 4 (3) + DSCT of SHIP 0.107 0.128 0.038 5 (4) + Baseline LSP Sum –0.400 0.270 <0.001 IEQ Worrying 1 Age of carers –0.138 0.019 0.229 2 (1) + Gender of carers 0.000 0.019 0.488 3 (2) + Education of carers –0.155 0.042 0.360 4 (3) + Baseline LSP Sum –0.438 0.215 0.001 IEQ Sum 1 Age of carers –0.281 0.079 0.013 2 (1) + Gender of carers –0.119 0.093 0.026 3 (2) + Education of carers –0.252 0.155 0.006 4 (3) + Course of disorder of SHIP 0.105 0.166 0.009 5 (4) + DSCT of SHIP 0.117 0.179 0.013 6 (5) + Baseline LSP Sum –0.346 0.284 <0.001 Table 2 Standard beta weights and incremental R2 for predictors of follow-up care-giving outcome variables in multiple regression analyses Outcome variables Model Variables added Final β R2 P-value K10 1 Age of carers –0.334 0.112 0.003 2 (1 ) + Gender of carers –0.035 0.113 0.011 3 (2 ) + Baseline LSP Bizarre –0.102 0.123 0.021 FSS 1 Age of carers 0.322 0.104 0.004 2 (1) + Gender of carers 0.011 0.104 0.016 MIVTIG 1 Age of carers –0.102 0.010 0.403 2 (1) + Gender of carers 0.058 0.014 0.632 3 (2) + Baseline LSP Sum –0.414 0.174 0.006 WHOQOL-BREF Physical 1 Age of carers –0.045 0.002 0.697 2 (1) + Gender of carers 0.065 0.006 0.790 3 (2) + Education of carers 0.214 0.052 0.267 4 (3) + Baseline LSP Anti-social 0.291 0.131 0.034 WHOQOL-BREF Psychological 1 Age of carers 0.213 0.045 0.061 2 (1) + Gender of carers 0.025 0.046 0.171 3 (2) + Education of carers –0.161 0.072 0.136 4 (3) + Baseline LSP Anti-social 0.307 0.160 0.012 5 (4) + Baseline LSP Self-care 0.201 0.189 0.009 WHOQOL-BREF Social 1 Age of carers 0.191 0.037 0.094 2 (1) + Gender of carers 0.093 0.045 0.177 3 (2) + Education of carers –0.211 0.089 0.073 4 (3) + Baseline LSP Bizarre 0.196 0.125 0.042 WHOQOL-BREF Environment 1 Age of carers 0.100 0.010 0.381 2 (1) + Gender of carers 0.107 0.021 0.443 3 (2) + Education of carers –0.006 0.022 0.655 IEQ Urging 1 Age of carers –0.315 0.099 0.005 2 (1) + Gender of carers –0.208 0.142 0.003 3 (2) + Education of carers –0.266 0.212 0.001 4 (3) + Baseline LSP Sum –0.193 0.245 0.000 IEQ Supervision 1 Age of carers –0.145 0.021 0.205 2 (1) + Gender of carers –0.131 0.038 0.232 3 (2) + Education of carers –0.279 0.114 0.029 4 (3) + DSCT of SHIP 0.222 0.163 0.010 5 (4) + Baseline LSP Sum –0.125 0.177 0.014 IEQ Tension 1 Age of carers –0.302 0.091 0.007 2 (1) + Gender of carers –0.055 0.094 0.024 3 (2) + Education of carers –0.153 0.117 0.026 4 (3) + DSCT of SHIP 0.107 0.128 0.038 5 (4) + Baseline LSP Sum –0.400 0.270 <0.001 IEQ Worrying 1 Age of carers –0.138 0.019 0.229 2 (1) + Gender of carers 0.000 0.019 0.488 3 (2) + Education of carers –0.155 0.042 0.360 4 (3) + Baseline LSP Sum –0.438 0.215 0.001 IEQ Sum 1 Age of carers –0.281 0.079 0.013 2 (1) + Gender of carers –0.119 0.093 0.026 3 (2) + Education of carers –0.252 0.155 0.006 4 (3) + Course of disorder of SHIP 0.105 0.166 0.009 5 (4) + DSCT of SHIP 0.117 0.179 0.013 6 (5) + Baseline LSP Sum –0.346 0.284 <0.001 Outcome variables Model Variables added Final β R2 P-value K10 1 Age of carers –0.334 0.112 0.003 2 (1 ) + Gender of carers –0.035 0.113 0.011 3 (2 ) + Baseline LSP Bizarre –0.102 0.123 0.021 FSS 1 Age of carers 0.322 0.104 0.004 2 (1) + Gender of carers 0.011 0.104 0.016 MIVTIG 1 Age of carers –0.102 0.010 0.403 2 (1) + Gender of carers 0.058 0.014 0.632 3 (2) + Baseline LSP Sum –0.414 0.174 0.006 WHOQOL-BREF Physical 1 Age of carers –0.045 0.002 0.697 2 (1) + Gender of carers 0.065 0.006 0.790 3 (2) + Education of carers 0.214 0.052 0.267 4 (3) + Baseline LSP Anti-social 0.291 0.131 0.034 WHOQOL-BREF Psychological 1 Age of carers 0.213 0.045 0.061 2 (1) + Gender of carers 0.025 0.046 0.171 3 (2) + Education of carers –0.161 0.072 0.136 4 (3) + Baseline LSP Anti-social 0.307 0.160 0.012 5 (4) + Baseline LSP Self-care 0.201 0.189 0.009 WHOQOL-BREF Social 1 Age of carers 0.191 0.037 0.094 2 (1) + Gender of carers 0.093 0.045 0.177 3 (2) + Education of carers –0.211 0.089 0.073 4 (3) + Baseline LSP Bizarre 0.196 0.125 0.042 WHOQOL-BREF Environment 1 Age of carers 0.100 0.010 0.381 2 (1) + Gender of carers 0.107 0.021 0.443 3 (2) + Education of carers –0.006 0.022 0.655 IEQ Urging 1 Age of carers –0.315 0.099 0.005 2 (1) + Gender of carers –0.208 0.142 0.003 3 (2) + Education of carers –0.266 0.212 0.001 4 (3) + Baseline LSP Sum –0.193 0.245 0.000 IEQ Supervision 1 Age of carers –0.145 0.021 0.205 2 (1) + Gender of carers –0.131 0.038 0.232 3 (2) + Education of carers –0.279 0.114 0.029 4 (3) + DSCT of SHIP 0.222 0.163 0.010 5 (4) + Baseline LSP Sum –0.125 0.177 0.014 IEQ Tension 1 Age of carers –0.302 0.091 0.007 2 (1) + Gender of carers –0.055 0.094 0.024 3 (2) + Education of carers –0.153 0.117 0.026 4 (3) + DSCT of SHIP 0.107 0.128 0.038 5 (4) + Baseline LSP Sum –0.400 0.270 <0.001 IEQ Worrying 1 Age of carers –0.138 0.019 0.229 2 (1) + Gender of carers 0.000 0.019 0.488 3 (2) + Education of carers –0.155 0.042 0.360 4 (3) + Baseline LSP Sum –0.438 0.215 0.001 IEQ Sum 1 Age of carers –0.281 0.079 0.013 2 (1) + Gender of carers –0.119 0.093 0.026 3 (2) + Education of carers –0.252 0.155 0.006 4 (3) + Course of disorder of SHIP 0.105 0.166 0.009 5 (4) + DSCT of SHIP 0.117 0.179 0.013 6 (5) + Baseline LSP Sum –0.346 0.284 <0.001 Discussion Care-giving appears to impact several domains of carers’ health and well-being. The care-giving role is associated with poor psychological health, moderate levels of grief, diminished quality of life, social isolation and negative care-giving consequences such as worries and tension. As hypothesised, predictors of poor health and well-being were specific service user-related characteristics and care-giving factors. Functioning levels of people with psychosis, as assessed by their care-giver, were stronger predictors of carers’ health and well-being at follow-up than other factors including education of carers, and cognitive functioning and course of disorder of people with psychosis. Social connection of the carers Individuals caring for SHIP participants with poorer overall functioning (as measured by PSP and LSP-20) reported greater social isolation (as measured by FSS). One explanation for this is the additional burden and/or restrictions resulting from caring for someone with poor functioning abilities. In addition, one of the predictors of follow-up WHOQOL-BREF Social Relationships scores was baseline LSP Bizarre subscale scores. This suggested that, in order to cope with poor functioning abilities and behaviour related to positive psychotic symptoms such as hallucinations of their relative or friend, carers sacrificed their social activities, which resulted in them experiencing poor satisfaction with their social relationships. This pattern is consistent with the literature (Rosen et al., 2001; Veltman et al., 2002). Psychological health of the carers Those who cared for SHIP participants with poorer functioning as measured by LSP-20 reported poorer psychological health. The significant predictors of psychological health—LSP Anti-social and LSP Self-care—implied that carers were more affected psychologically by highly disruptive behaviour of people with psychosis and poor self-care skills than by other facets of functioning captured by the LSP. Furthermore, as most of the carers had frequent and close contact with their relative or friend with psychosis, such close proximity may have made it particularly challenging for carers to manage behaviour related to positive psychotic symptoms and anti-social characteristics, and poor self-care skills. Another explanation is that, due to the poor self-care functioning abilities and disruptive behaviours of some people with psychosis, their carers had to exercise closer care, leading to greater psychological distress. Feelings of grief in carers The correlations and predictors of MIVTIG scores with PSP and LSP-20 scores indicate that poorer functioning of the SHIP participants was related to greater grief in the carers. The findings from the current study add to the literature that the feelings of grief in carers are largely related to the perception of the carers concerning the poor functioning of their relatives with psychosis. The perceived deterioration in functioning probably reflects the loss of independent functioning skills and employability and an impaired societal role. This perception of the poor functioning levels of people with psychosis causes carers to experience long-term grief, with important consequences for interventions to address carers’ grief and functioning of people with psychosis. Negative care-giving consequences for the carers Lower functioning levels of the people with mental illness predicted greater care-giving consequences, which was consistent with other studies (Dyck et al., 1999; Roick et al., 2006; Hjärthag et al., 2010). In addition, a more chronic course of illness was found to predict greater care-giving consequences, thus showing the deterioration of functioning and the long-term effects of caring for someone with psychosis. Carers with higher education levels also experienced less negative care-giving impact than their counterparts with less education. It could be that more highly educated carers had more resources and coping abilities to manage the impact of care-giving than other carers which is consistent with other studies (Dyck et al., 1999; Poon et al., 2015). Physical health of the carers One of the predictors of the physical health of carers at follow-up was LSP Anti-social scores, indicating that caring for people living with psychosis characterised by hostility and uncooperativeness had a long-term impact on carers’ perceived physical health. The absence of other predictive factors and the small predictive effect of LSP suggest that a starting point to assess and potentially intervene to improve carer’s physical health is to consider the functioning of people with psychosis, especially hostility and uncooperative behaviour. Another approach would be to consider the carer’s health and well-being within a holistic assessment. (This aspect is discussed below under ‘Implications for recovery-oriented social work practice’.) Carers’ perception of the functioning level of their relatives with psychosis Although carers’ perception of the functioning levels of people with psychosis might be affected by their subjective levels of care-giving burden, our previously published findings showed that this mechanism was not likely to bias our results (Poon et al., 2017). Our findings suggested that carers’ perception of the functioning levels of the individual with psychosis for whom they cared influenced their social connectedness, grief and psychological health over time. The findings in the current report further support the notion that carers’ perceptions of their relative’s functioning are a predictor of their own health and well-being. Therefore, assessing carers’ perception of the functioning levels of those for whom they are caring is a key strategy in understanding carers’ health and well-being. As carers’ perception may be different from clinicians’ assessment of the functioning levels of people with psychosis (Hjärthag et al., 2012), it is important for carers to routinely complete a functioning questionnaire such as LSP to assess their perceptions more accurately. Although LSP is part of clinicians’ routine outcome assessments, greater efforts are required for clinicians to evaluate outcome and recovery of carers in routine practice as recommended in the guidelines of the Australian National Mental Health Strategy, which could be usefully informed by LSP completion (Australian Health Ministers’ Advisory Council, 2013b). Implications for recovery-oriented social work practice There are some significant contributions to social work practice from this study. This population-based study supports evidence that social workers need to work with carers of people with psychosis more intensively to support recovery (Tew et al., 2012; Webber and Joubert, 2015). Social workers may use family psycho-education programmes to improve the functioning and well-being of carers (Lucksted et al., 2012). Within community mental health services, social workers can consider providing more therapeutic interventions to carers within their roles as case managers (Wilson and Kirwan, 2007) and involve both carers and service users collaboratively in service users’ care plans (Simpson et al., 2016). Social workers also have a crucial role in raising awareness in their multidisciplinary teams concerning the importance of supporting the recovery of carers and may provide leadership to facilitate the recovery of carers with complex needs. Recognising the importance of unique recovery journeys and therapeutic relationships (Simpson et al., 2016), social workers can facilitate discussion with individual families and their relative with illness, to support them to find meaning and hope despite the impact of the illness (Wyder and Bland, 2014; Fox et al., 2015). Our findings of multiple service user-carer predictive factors confirmed the importance of social workers’ holistic assessment (Watts and Hodgson, 2016). Referring to the conceptual recovery framework by Wyder and Bland (2014), our findings show that carers of people with psychosis continued to experience poor health and well-being, and care-giving burden over time (Poon et al., 2017), implying that most carers are not progressing well in their recovery journey and more can be done by workers to promote carers’ unique and personal recovery process (Lavis et al., 2015). The finding that functioning levels of people with psychosis affects carers’ health and well-being provides support for recovery-oriented social work in providing and advocating for psycho-social rehabilitation in mental health (Shankar et al., 2009; Lukens and Solomon, 2013). It is important for social workers to embrace psycho-social rehabilitation and recovery as key components of the core body of knowledge of the profession (Fox et al., 2015) and to consider providing psycho-social rehabilitation activities (Shankar et al., 2009; Lukens and Solomon, 2013). In line with the Australian Mental Health Plan (Commonwealth of Australia, 2009) which arguably has not been fully implemented (Roberts, 2011), our study suggests that the discussion of relevant psycho-social rehabilitation activities with people with psychosis would ideally involve their carers as well, since carers’ perception of the functioning levels of their relatives is important in the recovery process of both people with psychosis and their carers collectively. Given that the only significant change in carers’ health and well-being over time in this study was in their physical health satisfaction, social workers need to consider the importance of including physical health assessments of carers in their work. Social workers need to use their knowledge of community health services and make appropriate referral to services that may support physical well-being of carers as a critical component of their responses to clients. Furthermore, particular attention needs to be given to assess the physical health of those carers who are caring for people with more hostile and uncooperative behaviours. In general, social workers do not focus on physical health, although physical health is critical in the recovery process of individuals (Australian Health Ministers’ Advisory Council, 2013a). Social workers emphasise biopsychosocial assessment and interventions in their approach but they do not always consider physical health functioning of carers in their practice. As carers usually put the needs of their relatives first and neglect their own health, social workers can empower carers to consider their own well-being (Wyder and Bland, 2014), cultivate a healthy lifestyle and seek help for their own physical health problems. In addition, assessment tools, such as the WHOQOL-BREF Physical Health domain (WHOQOL Group, 1998) might be helpful for social workers to assess carers’ physical health satisfaction in order to facilitate discussion in managing physical well-being and refer them to appropriate health services. Strengths and limitations One of the strengths of this study was the recruitment of carers within a formal sampling framework. Therefore, the findings of this study are likely to be more representative of carers than other care-giving studies that used convenience sampling. The other strength of this study was the availability of longitudinal results which provided some knowledge of prediction of carers’ health and well-being over time. This study also had access to extensive service user-related information obtained from the SHIP study. This provided additional knowledge of service user-related characteristics influencing carers’ health and well-being. The first limitation of the study, which may have prevented some predictors from being identified within the two occasions of measurement, was that the follow-up interview was only one year from baseline recruitment. The second limitation is that the study did not assess types of informal social support affecting the health and well-being of carers. Social support was assessed indirectly using the Friendship Scale and WHOQOL-BREF Social Relationships. This care-giving study did not focus on ethnicity of carers, as most of the SHIP participants were born in Australia, limiting the number of carers from culturally and linguistically diverse communities. Another thing to note is that LSP findings in this study referred to carers’ perceptions: future studies might consider using more rigorous ways of measuring functioning levels, such as observational assessment of performance of specific tasks of daily living by people with psychosis, to compare these with carers’ perceptions. Conclusion The recovery concept is important in mental health services but the provision of psycho-social rehabilitation services is also essential to facilitate recovery in people with mental illness (Anthony, 1993; Killackey et al., 2014). The challenge for services is to review the current provision of psycho-social rehabilitation services and provide such services to support both the person with mental illness and to focus, in addition, on the needs of the carer (Crombie et al., 2007). More importantly, the goal of recovery should not only be the improvement of the outcome and quality of life of people experiencing psychosis, but should promote improvements of outcomes and quality of life for both people with psychosis and for their carers. This could constitute a shift of emphasis for social workers who currently include carers in their assessment and response, but as part of their psycho-social rehabilitation intervention with the client. Our findings also provide some evidence for social work’s potential contribution to the physical health of carers and supporting them in the recovery process while working with people with psychosis (Tew et al., 2012). Acknowledgements This publication is based on data collected in the framework of the 2010 Australian National Survey of High Impact Psychosis. In 2010, the members of the Survey of High Impact Psychosis Study Group were: V. Morgan (National Project Director), A. Jablensky (Chief Scientific Advisor), A. Waterreus (National Project Coordinator), R. Bush, V. Carr, D. Castle, M. Cohen, C. Galletly, C. Harvey, B. Hocking, A. Mackinnon, P. McGorry, J. McGrath, A. Neil, S. Saw and H. Stain. Ethics approvals for the study were obtained from relevant institutional human research ethics committees. The study was funded by the Australian Government Department of Health and Ageing. This report acknowledges, with thanks, the hundreds of mental health professionals who participated in the preparation and conduct of the survey and the many Australians with psychotic disorders and their care-givers who gave their time and whose responses form the basis of this publication. References Anthony W. A. 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The British Journal of Social WorkOxford University Press

Published: Sep 1, 2018

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