Stigma and discrimination experienced by people living with severe and persistent mental illness in assertive community treatment settings

Abstract

Aims:

To describe the perceived experiences of stigma and discrimination among people living with severe and persistent mental illness in assertive community treatment (ACT teams) settings in New South Wales (NSW), Australia.

Methods:

The Discrimination and Stigma Scale (DISC) was used in this cross-sectional study with people living with severe and persistent mental illness. The DISC is a reliable and valid, quantitative and qualitative instrument used to explore and measure levels of negative, anticipated and positive discrimination. Relevant clinical history and socio-demographic information were also collected.

Results:

A total of 50 clients participated, with 40 (80%) reporting experienced negative discrimination in at least one life area. Negative discrimination was most commonly experienced in being avoided or shunned (n=25, 50%), by neighbours (n=24, 48%) and family (n=23, 46%). Anticipated discrimination was common, with half of participants (n=25, 50%) feeling the need to conceal their mental health diagnosis.

Conclusion:

Discrimination was highly prevalent in everyday aspects of life. While healthcare professionals often tend to increase perceived stigma and discrimination, this was only experienced in interactions with general health professionals, while interactions with ACT team members decreased perceived stigma and increased positive discrimination. This indicates that healthcare professionals potentially have a significant role in reducing stigma and discrimination in mental health and that such an effect may be optimised in an ACT team setting.

Keywords

Schizophrenia mental disorders discrimination social stigma mental health services healthcare professionals

Introduction

Stigma associated with mental illness has been defined as a negative attitude, based on prejudice and misinformation, that is triggered by a marker of illness (Sartorius, 2007), and it continues to be a global public health challenge. It has been described as comprising of three elements: problems of knowledge (ignorance), attitude (prejudice) and behaviour (discrimination) (G. Thornicroft, 2006). Discrimination, the behavioural manifestation of stigma, can further be classified as experienced, anticipated or even positive, the beneficial treatment attributed to a mental illness (Brohan, Clement, et al., 2013; Vidojevic, Jocic, & Toskovic, 2012). In particular, mental health stigma acts as a significant barrier to receiving effective care, resulting in reduced social networks, self-esteem and a delay in seeking healthcare (Clement et al., 2015; Hansson, Stjernswärd, & Svensson, 2014).

Literature shows that healthcare professionals can also be agents of stigma (Hansson, Jormfeldt, Svedberg, & Svensson, 2013; Harangozo et al., 2014; Rao et al., 2009) with some studies suggesting health professionals to be one of the most stigmatising groups (G. Thornicroft, Rose, & Kassam, 2007). However, the literature on healthcare professional attitudes towards mental illness is mixed and although many studies demonstrate positive views by health professionals, the desire for social distance from people with a mental illness can be similar to the public (Wahl & Aroesty-Cohen, 2010). General practitioners (GPs) and psychiatrists have been shown to be more pessimistic about outcomes for someone with a mental illness than the general public and GPs may have more stigmatising attitudes than other professional groups (Jorm, Korten, Jacomb, Christensen, & Henderson, 1999; Reavley, Mackinnon, Morgan, & Jorm, 2014). While another study has shown that pharmacists with lower levels of stigma towards schizophrenia are more willing to provide medication counselling to consumers, highlighting the potential impact stigma can have on the delivery of healthcare (O’Reilly, Bell, Kelly, & Chen, 2015). Diagnostic overshadowing (Jones, Howard, & Thornicroft, 2008; van Nieuwenhuizen et al., 2013), the under-diagnosis and under-treatment of physical conditions once a mental illness is revealed, can further compound the issue as those with mental illness typically have poorer physical health with an estimated 15–20 years of lower life expectancy when compared to the general population (The Royal College of Psychiatrists, 2013). As governments aim to increase spending on primary mental healthcare services, it is important to address barriers to increasing the role of primary health professionals such as GPs and pharmacists (National Mental Health Commission, 2014).

The majority of previous stigma research surrounds measuring public attitudes of populations groups including healthcare professionals, towards people with mental illness. In recent years, literature has seen a shift towards investigating the experiences of stigma and discrimination from the mental health consumer’s perspective. One instrument that has aided research in this field is the Discrimination and Stigma Scale (DISC), which has been developed to measure both anticipated and experienced discrimination (Brohan, Slade, Clement, & Thornicroft, 2010). Developed by G. Thornicroft, Brohan, Rose, Sartorius, and the INDIGO Study Group (2009), the DISC has been used internationally in a growing number of studies showing persistently high levels of discrimination among mental health consumers (Lasalvia et al., 2013, 2015; G. Thornicroft et al., 2009). Literature shows that psychotic illnesses such as schizophrenia are the most stigmatised (Nordt, Rossler, & Lauber, 2006; Schulze & Angermeyer, 2003; Vidojevic et al., 2012). Hence, to the best of our knowledge, there is no previous data on discrimination from the consumer’s perspective in those living with a severe and persistent mental illness in an assertive community treatment (ACT) setting in Australia.

Therefore, this study aimed to describe the experiences of stigma and discrimination among people living with a severe and persistent mental illness in an ACT setting in NSW. The specific objectives were to explore the levels of experienced discrimination, particularly by healthcare professionals, and to investigate the nature of anticipated and positive discrimination in people living with a severe and persistent mental illness.

Methods

Study design

This cross-sectional study was conducted between July and October 2014 with clients of the Assertive Outreach Team (AOT) in the Lower North Shore catchment area of Sydney, Australia. The AOT is an ACT style team which provides intensive services to individuals with a severe mental illness. The AOT provides care coordination, education, support, advocacy and rehabilitation for its clients aiming to instil hope, promote well-being and support recovery. The study received ethics approval from the Northern Sydney Local Health District Human Research Ethics Committee (HREC/14/HAWKE/78).

Procedure

Inclusion criteria were age greater than 18 years, the participant was a current client of the AOT and English speaking with a primary diagnosis of schizophrenia or schizoaffective disorder. In addition, participants were required to be well enough to provide consent and for participation in the interview to not present a serious risk of harm to themselves or another person, as judged by the participant’s case manager or psychiatrist. Signed consent was gained prior to each interview. Face-to-face interviews were conducted using the DISC version 12 (DISC-12) survey (Brohan et al., 2013) and a demographic questionnaire. This questionnaire involved socio-demographic information including clinical and social history such as age, primary diagnosis and years of contact with mental health staff. The interviews were conducted at the Lower North Shore AOT Community Health Centre or at the client’s home if preferred. Each interview was audio-recorded if consent was received, and participants were reimbursed with a grocery voucher. Throughout all interviews, two researchers both trained in administering the DISC were present (C.L.O. and J.Y.); however, interviews were primarily conducted by J.Y.

Instrument

The DISC-12 is a reliable, valid, acceptable and feasible tool with established psychometric properties to measure experienced and anticipated discrimination (Brohan et al., 2013). The DISC-12 has 32 items, both quantitative and qualitative in nature, asking about the consumer’s personal experiences of discrimination in everyday aspects of life over a certain time frame (the past 12 months were chosen for the purposes of this study). It contains four subscales: unfair treatment (21 items), stopping self (four items), overcoming stigma (two items) and positive treatment (five items). For each question, the quantitative component asks the participant to rate discrimination on a 4-point Likert scale as 0 = not at all, 1 = a little, 2 = moderately or 3 = a lot. A ‘not applicable’ option is also available for each item where the participant was not involved in the life area for discrimination to occur. In this data analysis, responses will be reported as ‘not at all’, ‘any discrimination’ (a little, moderately or a lot) or ‘not applicable’. The qualitative component of the DISC then asks participants to give an example of the discrimination.

Data analysis

Levels of experienced discrimination were calculated for each question by adding any instance a participant reported ‘a little’, ‘moderately’ or ‘a lot’ of discrimination (Brohan, Rose, et al., 2013). Total scores were calculated for each subscale by counting the number of items a participant scored any reported instance of discrimination (either a little, moderately or a lot) as ‘1’. Descriptive analyses were conducted using SPSS version 22. Associations between variables were tested using Spearman’s rho correlation. Transcribed interviews were then thematically content analysed in the topic areas of the DISC (experienced, anticipated and positive). Qualitative data were also triangulated with quantitative results by analysing both sets of data within the topic areas (experienced, anticipated and positive) to look for similarities and differences within the data. The similarities identified helped to confirm the data, while the differences provided alternative perspectives.

Results

A total of 50 AOT clients of a possible 151 participated in this study (response rate = 33%). The mean duration of interviews was 39 minutes (standard deviation (SD) = 12.9, range = 17–71). The majority of participants were male (72%) with a median age of 52 years old (interquartile range (IQR) = 40–58), a primary diagnosis of either schizophrenia (86%) or schizoaffective disorder (14%) and a median of 25 years (IQR = 16–32) contact with mental health staff (Table 1). These demographics are consistent with the broader AOT client demographics and thus are considered a representative sample of the population.

Table 1.

Demographic characteristics of participants.

Characteristic	n (%)
Gender: male	36 (72)
Age (years): median	52; IQR = 40–58
Ethnicity: born in Australia	43 (86)
Education
No formal qualification	10 (20)
High school certificate	20 (40)
Vocational qualification	8 (16)
Higher diploma/degree	12 (24)
Employment
Unemployed	40 (80)
Work part time	3 (6)
Student	3 (6)
Other	4 (8)
Marital status
Single	47 (94)
Married	1 (2)
Divorced/widowed	2 (4)
Children: no	46 (92)
Living status
Alone	35 (70)
With flatmate	13 (26)
With partner	2 (4)
Smoking status: yes	28 (56)
Cigarettes smoked per day
1–19	14 (28)
20+	14 (28)
Primary mental health diagnosis
Schizophrenia	43 (86)
Schizoaffective disorder	7 (14)
Agrees with diagnosis
Yes	28 (56)
No	14 (28)
Unsure	8 (16)
Contact with mental health staff (years): median	25; IQR = 16–32
Previous mental health hospital admission: yes	47 (94)
Number of mental health hospital admissions
0–3	12 (24)
4–7	12 (24)
8–10	4 (8)
10+	19 (38)
Receiving involuntary treatment	17 (34)
Receiving government benefits
Disability support pension	48 (96)
Health professionals with regular contact
Case manager	50 (100)
Psychiatrist	49 (98)
General practitioner	46 (92)
Pharmacist	34 (68)
Dentist	27 (54)
Counsellor	2 (4)

IQR: interquartile range.

Experienced discrimination: unfair treatment

A total of 40 participants (80%) experienced negative discrimination in at least one life area, most commonly experienced in being avoided or shunned (n = 25, 50%), by neighbours (n = 24, 48%) and family (n = 23, 46%) (Table 2). The median number of life areas in which participants reported unfair treatment was 4 (IQR = 2–9).

Table 2.

Levels of experienced negative discrimination in order as they appear in the DISC-12.

Subscale 1 – unfair treatment	Not at all, n (%)	Any discrimination,^a n (%)	Not applicable, n (%)
Making or keeping friends	26 (52)	21 (42)	3 (6)
Neighbourhood	26 (52)	24 (48)	0 (0)
Dating, intimate relationships	15(30)	15 (30)	20 (40)
Housing	33 (66)	17 (34)	0 (0)
Education	13 (26)	4 (8)	33 (66)
Marriage/divorce	1 (2)	1 (2)	48 (96)
Family	25 (50)	23 (46)	2 (4)
Finding a job	17(34)	5(10)	28 (56)
Keeping a job	9 (18)	10 (20)	31 (62)
Public transport	37 (74)	11 (22)	2 (4)
Welfare benefits	43 (86)	6 (12)	1 (2)
Religion	30 (60)	5 (10)	15 (30)
Social life	31 (62)	12 (24)	7 (14)
Police	12 (24)	9 (18)	29 (58)
Physical health	40 (80)	9 (18)	1 (2)
Mental health staff	29 (58)	21 (42)	0 (0)
Privacy	39 (78)	10 (20)	0(0)^b
Personal safety and security	31 (62)	19 (38)	0(0)
Starting a family	9 (18)	1 (2)	40 (80)
Role as a parent	1 (2)	3 (6)	46 (92)
Avoided or shunned	23 (46)	25 (50)	1 (2)^b

‘Any discrimination’ is recorded as the sum of ‘a little’, ‘moderately’ and ‘a lot’ of unfair treatment (Brohan et al., 2013).

Missing data reported from one participant.

Feelings of being shunned or rejected emerged as a common theme from family, friends and strangers:

This morning I was sitting at the bus stop with a man, and he got up and left to the next bus stop, I knew it was because I was mentally ill. That’s happened a lot to me in my life … people look at me, and they make a judgement. I do reckon that mental illness shows like a skin disease. It’s really obvious. (Participant 41: male, 60 years)

These experiences seem to have a lasting impact on the self-esteem and perception of self-stigma of individuals as one participant describes her experiences in employment and the effect on her confidence:

As soon as I told her I had a mental illness, she said ‘no, you can’t have a job’. So that stopped me in my tracks. If I couldn’t even volunteer, who would hire me? It was a big blow (to my confidence). (Participant 18: female, 62 years)

Experienced discrimination: healthcare professionals

Almost one-fifth (18%) of participants reported experiencing discrimination from healthcare professionals such as the pharmacist, doctor or dentist when getting help for physical health problems (Table 2). Of those who experienced discrimination, more than half of them reported ‘a lot’ of unfair treatment, predominantly involving a lack of respect from the health professional, as one participant describes her experiences with her GP:

As soon as he (the doctor) sees that I’m schizoaffective they immediately start dumbing down to me, they really think that mental illness involves a lack of intelligence … He addressed all the questions to my case manager and I said ‘listen, I’m quite capable of telling you, she (the case manager) doesn’t know, she knows barely anything about it’, I was so insulted. (Participant 18: female, 62 years)

In all, 44% of participants did not agree with their mental health diagnosis, and 34% were currently receiving involuntary treatment under a community treatment order (CTO); however, there was no statistically significant association between reports of discrimination received from physical or mental health staff and current CTO status.

More than 40% reported discrimination from mental health staff. More closely, of these 20 participants, 16 were shown to be primarily negative attitudes towards being forced to take medication against their will due to a CTO, a form of involuntary treatment:

I’m forced to take it (the CTO) by law and have no options or choice and feel repressed by it, it’s sort of like blackmailing me, and I want to get out of it. (I’m) misdiagnosed because I’m on medication that I don’t even think I need. They’re making me take medication … It doesn’t do anything, if anything it makes me feel worse. (Participant 13: male, 40 years)

Otherwise, the majority reported no discrimination and spoke highly of the support they receive from mental health staff:

That’s (the mental health staff is) where I get my strength and support from … She (my case manager) talks to me as if I’m completely normal which is really good … I’ve never seen a hint of any prejudice from her with me being mentally ill, she’s been enormously helpful. (Participant 41: male, 60 years)

Anticipated discrimination

Anticipated discrimination was prevalent with half (50%, n = 25) of participants feeling the need to conceal their diagnosis (Table 3). The median number of life areas in which participants reported anticipated discrimination was 1 (IQR = 0–3).

Table 3.

Levels of anticipated discrimination in order as they appear in the DISC-12.

Subscale 2 – stopping self	Not at all, n (%)	Any anticipated discrimination,^a n (%)	Not applicable, n (%)
Work	21 (42)	19 (38)	10 (20)
Education or training courses	27 (54)	12 (24)	11 (22)
Dating, close personal relationship	23 (46)	20 (40)	7 (14)
Concealed mental health diagnosis	20 (40)	25 (50)	4 (8)^b

‘Any discrimination’ is the sum of participants who have reported stopping themselves ‘a little’, ‘moderately’ and ‘a lot’.

Missing data reported from one participant.

In particular, the decision of whether or not to disclose their diagnosis to their employer was a recurrent concern in 6 of 20 participants for which this question was applicable:

It’s not good to disclose it (my mental illness), because they’ll see it as not good for the job, they’ll use it against you. (Participant 13: male, 40 years)

The relationship between anticipated and experienced discrimination was investigated in three areas of life (work, education and relationships) common to both the experienced and anticipated discrimination sections of the DISC. Of the 20 participants for whom employment was applicable, 10 (50%) had anticipated discrimination, while only 3 (15%) participants had previously experienced discrimination. Similarly, for the 17 participants for whom education was applicable, only 1 (6%) person had experienced discrimination yet 4 (23%) anticipated it; or for relationships, 15 of 30 people anticipated discrimination in relationships yet only 6 (20%) reported experiencing it.

It was found that anticipated discrimination was not necessarily linked with previous experienced discrimination with a statistically non-significant relationship between the two. Participants acknowledged the lack of experienced discrimination to be due to the anticipated discrimination:

I tend not to say schizophrenia … that’s probably why I haven’t been treated unfairly. (Participant 48: female, 52 years)

The significance of anticipated discrimination is a real fear among individuals, hindering their participation in daily activities in order to avoid experiencing discrimination. The median age of participants and years of contact with mental health staff were 52 (IQR = 40–58) and 25 (IQR = 16–32), respectively. When correlated with anticipated discrimination to see whether age was associated with lower or higher levels of anticipated discrimination over time, no statistically significant relationship was detected.

Overcoming stigma

A total of 31 (62%) participants reported overcoming stigma and discrimination through making friends with those who don’t use mental health services and 30 (60%) have used their personal skills and abilities to coping with stigma and discrimination. Examples of skills or coping mechanisms varied including music, meditation, writing, avoidance and even acceptance. For many, examples of discrimination were so frequent; individuals have accepted it as the norm where ‘getting used to it’ is described as a method of coping and overcoming stigma; ‘I think I’m getting it (discrimination) under control’ (Participant 12: male, 49 years).

Positive discrimination

Experiences of positive discrimination were common with almost two-thirds of participants reporting beneficial treatment in getting welfare benefits and housing (64% and 60%, respectively). Similarly, almost half reported more positive treatment from their family (Table 4). The median number of life areas in which participants reported anticipated discrimination was 2 (IQR = 1–3).

Table 4.

Levels of reported positive discrimination (more beneficial treatment) in different areas of life as outlined in the DISC-12.

Subscale 4 – positive treatment	Not at all, n (%)	Any positive discrimination,^a n (%)	Not applicable, n (%)
Family	25 (50)	22 (44)	3 (6)
Getting welfare benefits	17 (34)	32 (64)	1 (2)
Housing	18 (36)	30 (60)	2 (4)
Religion	16 (32)	16 (32)	18 (36)
Employment	11 (22)	10 (20)	29 (58)

‘Any discrimination’ is the sum of participants who have reported more positive treatment ‘a little’, ‘moderately’ or ‘a lot’.

Family, a major source of positive treatment, was described as ‘very supportive’:

They’re good to me despite what I’ve done which might not be acceptable to most people … they compensate and tolerate things more readily than the average Joe. (Participant 10: male, 40 years)

Interestingly, many reports of positive discrimination were rather a lack of negative treatment, that is, how people would usually expect to be treated in society. In relation to family, a participant describes ‘(my sister) says she enjoys talking to me’ (Participant 4: male, 51 years) as ‘a lot’ of positive treatment and being treated ‘with respect’ was considered to be ‘very positive’ (Participant 26: female, 39 years).

Discussion

To our knowledge, this is the first study using the DISC-12 to investigate stigma and discrimination from the perspective of (a) individuals living with severe and persistent mental illness in Australia and (b) individual service users in an ACT team. The unique nature of this study allowed us to focus on discrimination, as it importantly investigates the translation of stigma to the lived experiences of individuals rather than just attitudes. A high rate of reported negative experienced discrimination, encompassing all areas of life, is consistent with international research, reaffirming the widespread and pervasive nature of discrimination. Supporting previous stigma research, healthcare providers were a prominent source of stigma (Clarke, Usick, Sanderson, Giles-Smith, & Baker, 2014; Jorm et al., 1999; Nordt et al., 2006; Rao et al., 2009).

Experiences of discrimination among people with schizophrenia are prevalent and varied across many life domains. The most commonly reported areas of discrimination were in being avoided, in family, friends and neighbourhood. Our results are very similar to a large international study of 27 countries, also using the DISC in a population of people with schizophrenia, who reported high rates in these same key areas of being avoided (49%), family (43%) and friends (47%) (G. Thornicroft et al., 2009). This suggests that discrimination in those with schizophrenia is consistent and does not discriminate across different settings and countries. Notably, most commonly reported areas of discrimination are also areas of life that are closest to the individual, as one study suggests individuals have the most contact with family and friends, hence these areas provide more of an opportunity to potentially result in discrimination (Hansson et al., 2014).

Interestingly, reported rates of negative discrimination appear lower when compared to some DISC studies in those with any mental health diagnosis (Brohan et al., 2013; Hansson et al., 2014; C. Thornicroft, Wyllie, Thornicroft, & Mehta, 2014). Among individuals with schizophrenia, this appears counterintuitive, as literature reports schizophrenia to be one of the most stigmatised mental illnesses. Our findings are consistent with another study that similarly showed an under-reporting of unfair treatment in a group of individuals with schizophrenia as compared to depression and bipolar disorder (Henderson et al., 2015). This suggests that a diagnosis of severe schizophrenia could lead to an under-reporting of discrimination. One suggested reason to account for this disparity is the unique population group included in this study, which may be unaware of the stigma due to the lack of insight into their condition or they are less engaged with society as evidenced by the high number of ‘not applicable’ values. It may be due to the context of these consumers all being cared for within a well-established ACT team. This hypothesis is supported by anecdotal evidence from the mental health staff in this study, who report that they were possibly shielding their clients to some extent from the negative experiences of stigmatisation. It is also possible that impaired memory and social cognition, a cognitive symptom of schizophrenia, could explain difficulty in recalling experiences of stigma (Cirillo & Seidman, 2003). A contrasting potential hypothesis to support the lower reporting of discrimination could be that some groups remain ‘indifferent’ to stigma, as proposed by Corrigan and Watson (2002), as compared to others who respond to self-stigma with low self-esteem, diminished self-efficacy or righteous anger (Corrigan et al., 2002). Although, regardless of these categories a potential under-reporting of negative experienced discrimination may indicate higher actual levels of discrimination, requiring further investigations such as from the perspective of carers of ACT clients and staff members.

Participants of this study reported a median of 25 years contact with mental health staff. Many areas of life as outlined in the DISC were reported as not applicable including social life, parenting and marriage possibly due to the specific population group included in the study. However, previous research has shown conflicting results in relation to length of illness and reports of stigma and discrimination. Lasalvia et al. (2014) found that there appears to be little difference in reported negative discrimination between those with a first episode psychosis and chronic schizophrenia, suggesting that discrimination may be persistent regardless of illness phase. In contrast to Lasalvia et al. (2014), Corker et al. (2015) recently found lower rates in those with first episodes of a mental illness, suggesting the experience of discrimination may increase with the duration of illness. It is also interesting to note that Corker et al. (2015) found higher rates of discrimination in first episodes of depression compared to first episodes of schizophrenia, which is in contrast to global population data on discrimination experienced by people with depression and schizophrenia (Lasalvia et al., 2013; G. Thornicroft et al., 2009). A number of participants in this study commented on ‘getting used’ to the stigma over the years suggesting they had developed skills to cope with discrimination, while others appeared to still be affected by discrimination on a daily basis.

The high number of ‘not applicable’ life items in this population group demonstrated the high rates of social isolation and are likely to further perpetuate the persistent stigma surrounding schizophrenia by highlighting social exclusion. The recurrent theme of loneliness and being ‘avoided or shunned’ can either lead to or be a result of discrimination; however, the cause–effect relationship has not been ascertained. The severity of stigmatising attitudes is significant enough to be referred to as a ‘second illness’ (Gonzalez-Torres, Oraa, Aristegui, Fernandez-Rivas, & Guimon, 2007) which exacerbate the chronic and disabling nature of the condition, hindering the integration of individuals into the community (Penn, Kommana, Mansfield, & Link, 1999). This is consistent with previous research showing ACT clients’ perceptions of stigma and discrimination may interfere with their sense of belonging and integration into the community (Prince & Prince, 2002), highlighting the need to address stigma and discrimination in order to enable clients of ACT teams to integrate with their community.

Healthcare professionals are not immune to performing acts of discrimination and have shown to be common agents of stigma (Clarke et al., 2014; Rao et al., 2009). Our results reflected this with almost one-fifth of participants reporting receiving discrimination when getting help for physical health problems. Although this value is less than reported levels in other DISC studies (Brohan et al., 2013; Corker et al., 2013; Hansson et al., 2014; Henderson et al., 2012; C. Thornicroft et al., 2014), it is nonetheless concerning that despite having higher levels of mental health literacy, health professionals are shown to perpetuate discrimination. One study found that independent of mental health literacy levels, health professionals displayed an equal level of social distance as the general public (Nordt et al., 2006). Studies have shown that, more effective than education alone, contact-based interventions combine information provision with direct interaction, thereby showing the greatest potential for reducing mental health stigma (Corrigan, Morris, Michaels, Rafacz, & Rusch, 2012; Couture & Penn, 2003; G. Thornicroft et al., 2016). Such interventions are most effective when the criteria of Allport’s contact hypothesis are met (equal status, intimate contact and within in a cooperative environment) (Desforges et al., 1991). An implication for healthcare professionals is to examine their own attitudes while interacting with consumers (Schulze, 2007). Hence, healthcare professionals have a pivotal role in optimising health outcomes as they can act to either increase or reduce stigma (Schlosberg, 1993), particularly in an ACT style model of care supporting multiple and complex needs.

By extension, mental health staff similarly play a crucial role in reducing stigma. Findings from our study show that much higher levels of negative discrimination were being reported for mental health staff. These differences, however, could be attributed to involuntary treatment, perhaps due to a lack of insight into their condition. Results from our study are consistent with another study that explored patient perspectives on CTOs that identified the theme of feeling restricted and coerced (Rawala & Gupta, 2014). In all, 16 of the 21 participants, who reported discrimination from mental health staff, commented on involuntary treatment typically in the acute hospital setting. Therefore, it appears that discrimination by mental health staff was only reported by four participants (8%) not undergoing involuntary treatment at the time of the discrimination occurring. This is significantly lower than the reported 38% in another DISC study in people with schizophrenia (Harangozo et al., 2014). Conversely, there were numerous reports of positive treatment by the mental health staff. This is consistent with the ACT approach, unique in its holistic approach through extensive services such as medications, housing and finances and its emphasis on a multidisciplinary team approach in the community setting (McCluskey, Arblaster, & Urlic, 2009). A review of the ACT model has found it to reduce hospital admissions, as well as improve symptoms and quality of life (Phillips et al., 2001); however, the cost-effectiveness of the assertive outreach model in Australia is yet to be evaluated (McCluskey et al., 2009).

Anticipated discrimination was also prevalent even without previous experienced discrimination. Interestingly, the high proportion of not applicable items in education and employment are reflective of anticipated discrimination, in avoiding situations to prevent discrimination occurring (Farrelly et al., 2014). Qualitative data support this where individuals acknowledge the lack of experienced discrimination being attributed to the discrimination they anticipate. Anticipated discrimination can also lead to reduced quality of life, withdrawal and social marginalisation, which can precipitate stigmatising attitudes, and worsening mental health (Lasalvia et al., 2014). The high rates of anticipated discrimination suggest the importance of addressing self-stigma in designing anti-stigma interventions (G. Thornicroft et al., 2009; Ucok et al., 2012), as self-stigma has been shown to lead to decreased self-esteem and self-efficacy (Corrigan, Watson, & Barr, 2006), and thus potentially further increasing anticipated discrimination.

When compared to other DISC papers (G. Thornicroft et al., 2009; C. Thornicroft et al., 2014), much higher levels of positive discrimination were reported, perhaps attributed to the vast majority of participants who acknowledged the help of government housing and receiving welfare benefits. While examples of ‘true’ positive discrimination were mentioned, a gradual theme emerged where positive discrimination appeared rather to be a lack of negative discrimination. Examples of being ‘good’ and ‘kind’, while might be the expected norm in society, were seen as advantageous from the perspective of the consumer. Similar results from Rose et al. (2011) found that examples given for positive discrimination, being treated with ‘kindness’ and ‘understanding’, lacked the strong connotations associated with negative discrimination being ‘shunned’, ‘abused’ and ‘mocked’ (Rose et al., 2011). Ironically, even positive discrimination has revealed the negative consequences of stigma, where being treated unfairly is the expected reality. This highlights the persistent and damaging effect of stigma on the lives of individuals with schizophrenia where discrimination has become the norm.

Strengths and limitations

This study has a number of strengths and limitations. One key strength is that the DISC is a psychometrically validated tool that provides direct self-reported data from the mental health consumer, rather than hypothetical scenarios and case vignettes (Brohan et al., 2013). Conducting this study in a population group with severe and persistent mental illness provides participants with the opportunity to voice opinions and share their own personal experiences. However, a limitation of this could be the lack of generalisability of results, as clients of the AOT are not necessarily representative of the wider Australian mental health population. The service users of ACT teams tend to be among the most disabled of severely and persistently mentally ill individuals; hence, there is the possibility that participants may have lacked insight into their illness or have had their recall impaired due to the severity and duration of their illness. The lack of generalisability extends to the staff at the AOT who are unique in adopting a proactive and holistic approach to mental healthcare which may not currently be the standardised practice across Australia. Furthermore, the small sample size used for this study limited the ability to conduct multivariate statistical analysis; however, this is primarily a descriptive, exploratory study, focusing on rich qualitative responses.

Further research may investigate other perspectives of discrimination from staff and family members to address potential under-reporting. Likewise the study could be conducted among a group with a different diagnosis or within a different mental health team to generate comparative data and a wider picture of mental health stigma and discrimination in Australia. This method of conducting consumer-centred research has provided invaluable insight into designing more effective interventions for reducing stigma.

Conclusion

Individuals living with severe and persistent mental illness experience discrimination in everyday aspects of daily life including physical and mental healthcare. Stigma can be internalised, leading to high rates of anticipated discrimination, where individuals restrict their participation in areas of life, regardless of whether they have experienced stigma. Positive discrimination was found to be rather the lack of negative discrimination. In particular, healthcare professionals in ACT teams have a potentially significant role in reducing stigma and discrimination with severely and persistently mentally ill individuals.

Footnotes

Acknowledgements

The authors thank Prof. Graham Thornicroft (Health Services and Population Research Department Institute of Psychiatry, Kings College London) for permission to use the DISC and clients and staff of the Lower North Shore Assertive Outreach Team, North Shore Ryde Mental Health Service, for their support and contribution to the study.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

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