http://informahealthcare.com/jmh ISSN: 0963-8237 (print), 1360-0567 (electronic) J Ment Health, 2014; 23(2): 88–93 ! 2014 Shadowfax Publishing and Informa UK Limited. DOI: 10.3109/09638237.2014.880408
ORIGINAL ARTICLE
Discrimination against people with a mental health diagnosis: qualitative analysis of reported experiences Sarah Hamilton1, Elanor Lewis-Holmes2, Vanessa Pinfold1, Claire Henderson2, Diana Rose2, and Graham Thornicroft2 The McPin Foundation, London, UK and 2Health Service and Population Research Department, Institute of Psychiatry, King’s College, London, UK
Abstract
Keywords
Background: Discrimination towards people with a mental health diagnosis has public health implications. Recently, efforts have been made to tackle discrimination through campaigns and education. Understanding experiences of discrimination is vital in targeting efforts effectively. Aims: The study aimed to explore experiences of reported discrimination described by service users in a national survey in England. Method: Structured telephone interviews were conducted with 537 mental health service users, randomly selected from five National Health Service Trusts in England. Interviews asked about experiences of discrimination in different life areas. Twenty-three interviews were audiorecorded and qualitatively analysed to develop a typology of discrimination experiences. Results: We identified seven types: organisational decisions; mistreatment; social distancing; stereotyping; lack of understanding; dismissiveness; and over-protectiveness. Conclusions: Discrimination should be understood as occurring within social relationships and influenced by expectations of contact within these relationships. A better understanding of these processes can help target more effective messages in anti-discrimination campaigns.
Discrimination, mental illness, stigma
Background The concept of stigma has been widely discussed and well developed in relation to mental health, building from the work of Goffman (1963). In contrast the concept of discrimination is less satisfactorily established (Thornicroft, 2007). In the last 15 years, researchers have begun to ask people with mental health problems about their day-to-day experiences of discrimination, leading to a re-evaluation of the concept (Angermeyer et al., 2004; Corrigan & Matthews, 2003; Dickerson et al., 2002; Rose et al., 2011; Wahl, 1999). Definitions used in discrimination research vary from broad terms like ‘‘unfair treatment’’ (Sayce, 1998) to legal definitions which limit behaviours studied to particular settings, for example employment practices (Corrigan et al., 2004). Studies often refer to ‘‘perceived discrimination’’, a term criticised as shedding doubt on people’s reports, as somehow different from ‘‘objective’’ discrimination, and portraying participants as over-sensitive (Sayce, 1998). However, the emphasis it places on how behaviours are understood highlights difficulties in linking stigmatising attitudes in one person with the experience of discrimination by another.
Correspondence: Ms Sarah Hamilton, The McPin Foundation, 32-36 Loman Street, London SE1 0EG, UK. E-mail: sarahhamilton@ mcpin.org
History Received 1 May 2013 Revised 10 December 2013 Accepted 18 December 2013 Published online 7 February 2014
Studies show that mental health discrimination is identified most frequently as occurring in interpersonal interactions with family being consistently reported as a primary source of discriminatory behaviours (Corker et al., 2013; Henderson et al., 2012; Lasalvia et al., 2012; Thornicroft et al., 2009; Thornicroft & Kennedy, 2009). This may be due, in part, to high levels of social exclusion, resulting in more social contact with family members than other potential sources (Angermeyer et al., 2004). It is also likely that discrimination takes different forms depending on the setting and social relationship in which it occurs. For example, friends may discriminate by avoiding social contact. Organisations may discriminate through systems which exclude people with mental health problems, for example, from holding positions of authority. There is a need, therefore, to consider processes and social context in developing an understanding of how behaviours are experienced as discrimination and their impact on people’s lives. Kleinman & Hall-Clifford (2009) challenge researchers to explore the way that stigmatising behaviours impact on individuals within local networks, by combining quantitative and qualitative methods (Rose et al., 2011). In this article, we offer insights that may help researchers in meeting this challenge by using qualitative methods to explore the kinds of behaviour identified by people with mental health problems as discriminatory within various relationships and contexts. The study is exploratory, using a small body of data collected
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Discrimination in mental health
DOI: 10.3109/09638237.2014.880408
J Ment Health Downloaded from informahealthcare.com by Nyu Medical Center on 05/28/15 For personal use only.
as part of a larger, structured survey. As such, we aim to identify emerging issues from these analyses to be further explored in future research. In this study, we use the term ‘‘experienced discrimination’’ to focus on how behaviours are experienced by the participants. The questions used in the survey required participants to apply judgements about the meaning of, and the reasons for, others’ behaviours. The same behaviour may be experienced as discriminatory by one person, but not another. The judgements required in reporting discrimination are likely to be different in relation to a family member, a potential employer, or a healthcare provider, due to different expectations, roles and the nature and intimacy of their connection. Acknowledging and understanding these differences is crucial if campaigns are to effectively target discriminatory behaviours among different groups.
Methods A survey of 537 mental health service users was conducted in five NHS Trusts (mental health service provider organisations) in England, geographically spread across the North East, North West, South East, East of England and Midlands (Corker et al., 2013). Structured telephone interviews were used to measure the occurrence of discrimination in a range of life areas. The study received approval from Riverside NHS ethics committee. A random sample of people receiving specialist mental health care was selected from each participating Trust’s patient database. Eligibility criteria were a diagnosis of a mental illness; aged 18–65; and living in the community, i.e. not in prison or hospital. Care teams reviewed the sample to confirm eligibility and remove individuals felt to be at risk of distress from receiving an invitation. Potential participants were mailed information about the study and a consent form. Individuals wanting to take part returned a signed consent form and provided a contact telephone number. The Discrimination and Stigma Scale (DISC-11) is a structured interview, administered over the telephone (Thornicroft et al., 2009), consisting of questions about experiences of negative and positive discrimination. Items cover 21 life areas, including family, social life, employment, neighbours, police, and health services. Further information about the development, content and psychometric properties of the measure are available elsewhere use (Brohan et al., 2013). Respondents were asked to describe any discrimination experiences and rate them. Interviewers probed and clarified these examples. Interviews were conducted by interviewers trained in administering the DISC-11. Two-thirds of the interviewers had personal experience of mental health problems, and the remainder had a personal or professional interest in mental health, including carers. Participants were randomly allocated to interviewers (Hamilton et al., 2011). A subsample of 23 interviews was audio recorded, with participants’ consent, to (i) provide a quality check on the interviewing and (ii) provide a qualitative insight into participants’ responses to the questionnaire. This was 5% of the total sample, a proportion set as feasible in the timescale and sufficient
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Table 1. Demographics. Characteristic Male Female Age (years) Range Mean Employment Employed Volunteering Unemployed Retired Diagnosis Anxiety disorder Bipolar disorder Depression Personality disorder Schizophrenia Other Received involuntary treatment Yes No
Participants (n ¼ 23) 7 16 26–60 46.3 6 1 15 1 4 4 6 1 5 3 7 16
for the purpose of reviewing. These were conducted by 10 interviewers: seven service users and three non-service users. Each interviewer was asked to record the first three interviews they carried out where the participant was willing to be recorded. If a participant declined they were not recorded and the next participant was asked. The characteristics of the 23 participants included in the qualitative study are shown in Table 1. Analysis Recorded interviews were transcribed and analysed using a method of qualitative content analysis similar to that described by Graneheim & Lundman (2004). Meaning units were taken as the responses given to each questionnaire item. Coding was conducted by two researchers, one with personal experience of mental health problems. The process for developing codes was iterative, with each researcher independently identifying themes, discussing them together and revising them until agreement about codes was reached and a framework developed. All transcripts were then recoded using this framework. The analysis aimed to identify key characteristics of reported discrimination experiences, to identify common categories and differences. In some cases, participants gave a rating without providing more detail. However, most participants gave additional information which was coded and categorised. The seven types identified are not mutually exclusive; more than one could be used to describe a single incident or behaviour. In some cases, where the participant reported no discrimination they gave examples of positive experiences they had had in that context. These were also coded as they provide information about participants’ understanding of discrimination in relation to that item. Examples given below are used to illustrate these categories. Participants’ sex, age and primary diagnosis as reported by the participant are given after each quote.
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Since the qualitative content analysis is based on a limited number of recorded interviews the findings should be treated as exploratory. The findings presented in this paper address broad categories of discrimination type which were described by participants in distinct ways.
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there’s something seriously wrong in your head, that’s how they actually judge you [. . .] People judge you in a different way. (Female, 55, diagnosis not given) I’m open in the church that I go to that I’ve got mental health problems and people think you’re a slow learner (Male, 48, Bipolar Disorder)
Results Organisational decisions
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Three instances from three participants were categorised as disadvantages based on organisational decision-making. This category includes decisions which reduce or withhold access to organisational services or otherwise inequitably apply organisational decisions. They are distinct from other categories in that they are not attributed to the behaviour of an individual. Car insurance, motorbike insurance, anything insurance [. . .] because we’re penalized very badly for having mental health (Female, 47, Bi-polar Disorder) I had had some time off work with depression and anxiety and I felt I was going to lose my job . . . I was made bank staff rather than contractually employed, which means if I go off sick I don’t get paid. (Male, 56, depression and anxiety) Mistreatment Seven instances from four respondents were categorised as ‘‘mistreatment’’. Such examples of mistreatment included behaviours perceived as intended to cause emotional pain. Because I hear voices and sometimes when I’m not very well, I’ll talk to myself and people can be quite nasty and hurtful. (Female, 41, Personality Disorder)
Social distance Sixteen examples from 11 participants were categorised as social distance behaviours. In some cases these were explicit incidences of avoidance, but more often they were more general comments on the impact of disclosing a mental health problem to others. If people don’t know me and don’t know about the problems, they’ll talk to me quite happily. Once they’ve seen the problems or someone’s told them about me, they tend to be a bit more wary. (Male, 38, Depression) Stereotyping and being judged Participants rarely talked about people explicitly using labels. Instead they described impressions of being seen differently, or being the victim of judgements based on their diagnosis. Twenty-six instances from 15 respondents fitted this category. Well I think people that know that you have had mental health problems, they perhaps think to you, you know that,
Lack of understanding or support Seven participants’ responses referred to a lack of understanding or support about the condition. I don’t think people understand depression as much [. . .] (Female, 44, Depression)
Dismissiveness Five responses from four participants were categorised as dismissiveness. In these instances, participants talked about people not believing in the mental illness, or treating it dismissively. They were so dismissive of the whole mental health thing and the possibility that some people might be in particular need because they’ve got a mental health problem (Female, 60, Schizophrenia)
Over-protectiveness Seven responses from six participants described overprotectiveness by others. Despite perceiving this treatment as discrimination, in some cases, participants acknowledged that this behaviour may be motivated by the best of intentions, and even that it might have advantages. Nevertheless, they were identified as negative discrimination. I suspect I’m handled a little more carefully by the GP. [. . .] Rather than just sitting in the waiting room, they tend to have someone on the reception waiting for me. Which can be quite good! Demeaning, but you get seen to quick. (Male, 38, Depression)
Social relationships and discrimination The descriptions used by participants to describe the negative behaviour experienced were analysed for the common themes described above and then considered in relation to the specific relationships in which they were identified. Four relationship types were chosen for comparison as the ones where examples were most frequently given. These are family, friends, employers and neighbours. Family The survey supported previous findings in relation to discrimination by family; over half of respondents reported discrimination from their family because of their diagnosis (Henderson et al., 2012).
Discrimination in mental health
DOI: 10.3109/09638237.2014.880408
Participants’ responses show two types of behaviour that were commonly reported. First, family was almost the only relationship in which dismissiveness was reported. Participants described families refusing to believe that mental illness was genuine, or that the participant suffered from it.
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When I told my sister I was getting harassed [. . .] she just didn’t believe me, says ‘it’s all in your head and [. . .] you’re not very well and you’ve been diagnosed with schizophrenia, so . . . (Female, 32, schizophrenia) The only other place where this was reported was in one participant’s conversation with fellow church-goers. There is no reason to think that family members are more skeptical about mental illness than others. Indeed, they are more likely to have witnessed the effect of acute mental illness. One explanation might be that family members are reluctant to accept the consequences and meaning of a diagnosis, and react by denying or dismissing it. Second, understanding and support were frequently mentioned, usually relating to positive, rather than negative behaviour. Frequently participants reported that it had taken time for their families to become supportive. I think they’ve learned to accept the problems I have so it’s not been so much of a problem [in the last year]. (Male, 38, depression) Participants’ descriptions of supportive families reveal their expectations of treatment from family members. Participants identify support and understanding as the norm for behaviour within such a relationship (i.e. the behaviour they think other people would experience) and respond to the question in relation to this expectation.
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Employers Twenty-four per cent of survey respondents reported discrimination when trying to find a job and 17% in keeping a job. Among employers, the most commonly described behaviour was stereotyping, for example through considering the participant to be incompetent or unsuitable for a job. One participant reported having been fired from three previous jobs as a result of her mental health problems. I said I was on tablets cause I had to tell them what medication I was on [. . .] and, erm, he just said I may not like it, so I said, well, I’ll be coming off ‘em, which was a lie actually [. . .] I had to lie to get the job really. (Female, 59, Depression) Four participants expressed the view that employers would not take on someone with a mental health diagnosis to explain decisions either not to seek work, or to conceal their diagnosis when applying for a job. Neighbours In contrast to friends and family, neighbours were much less likely to be aware of the mental health diagnosis, though they may have a general awareness of someone experiencing difficulties. Nevertheless, a quarter of the overall survey reported discrimination from neighbours. Only three specific examples of poor treatment by neighbours were given in the recorded interviews: two of these were categorised as mistreatment, both described as severe and explicit examples of harassment, while the third example was of social distance. [. . .] the girl next door, and then the street, was shouting get back to (name of local hospital ward) [. . .] and then I had stones threw at me window pane and that. (Female, 32 Schizophrenia)
Friends Again, over half of respondents in the overall survey reported discrimination from friends. The most common type of discrimination reported in relation to friends is social distance. Nearly half of participants talked about losing friends, or, in some cases, no longer having any kind of social life. My friends treated me like a hot potato when I was ill. (Female, 55, schizophrenia) I don’t have friends, me friends turn against us [. . .] in the last 3 years people have gone against us (Male, 36, diagnosis not known) As with family, several participants who had not experienced discrimination from friends nonetheless responded to this question in terms of a lack of social distance, indicating that participants tended to understand potential discrimination from friends in these terms. In contrast to family, participants mostly described a lack of understanding from friends, except from friends who also had experience of mental illness.
Discussion The examples given by participants represent behaviours that they judge to be discrimination. Observers may not assess the same behaviours in this way. The analysis presented here explores participants’ descriptions of these behaviours to elucidate the characteristics that lead to their judgement in different situations. In relation to the four groups discussed above (family, friends, neighbours, employers), participants identified different patterns of behaviour in response to the same question formulation. We suggest that a fuller understanding of these discriminatory behaviours will be based not only on perpetrators’ attitudes towards mental illness but also on the different roles and expectations involved in these relationships. While it may seem obvious to suggest that discrimination is manifested differently among the four groups discussed here, this is rarely discussed in studies of discrimination. A key theme emerging for each of these groups is people’s desire to distance themselves from the person with mental illness. In relationships where it is relatively easy to do so
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(e.g. friends) instances of physical distance are common. Employers and potential employers are able to enforce distance through firing or not hiring people with a mental health problem. Where this is less easily achieved (e.g. family) there may be a tendency to create distance from the condition instead, by denying its existence or dismissing it as easily overcome. Instances of mistreatment and harassment reported in relation to neighbours, in addition to being a direct attack upon the person concerned, may also be understood in terms of discouraging social contact, or even, at its extreme, in trying to drive people away from a neighbourhood, as in the instance described above. The analysis also draws out themes of support and empathy. In relationships where personal support is sought or expected, primarily friends and family, absence of such support is experienced as negative treatment. This interpretation is not mentioned in relation to more distant relationships such as neighbours. Expectations are thus crucial in interpreting the behaviours of others. However, support and empathy may also lead to a sense of overprotectiveness which can be perceived by the service user as a belief that they are incompetent or overly sensitive. Support and empathy can be both empowering and disempowering and indicates that at times efforts at positive discrimination or reasonable adjustment may in fact be perceived as negative. Finally, these findings demonstrate the complexity involved in linking discrimination to negative attitudes. While overprotection may be due to unfounded judgements about people with a mental health diagnosis, these may be very different from the judgements that lead to mistreatment. In addition, further research is needed to understand how the experience of behaviours as discrimination may be affected by internalised stigma, previous experiences and participant characteristics as these factors could not be explored in this study. Limitations of the study This study is exploratory, having drawn on a small body of data collected as part of a structured survey. Nevertheless, the data suggests a pattern of variation in the experiences and interpretation of behaviours reported as discriminatory which requires a more in-depth understanding. Our aim has therefore been to add to the literature and provide a starting point for further work in this area. The structured nature of the interview limited the extent to which participants could be encouraged to reflect explicitly on their understanding of concepts of discrimination. Our interpretation of people’s answers could not, therefore, be checked with participants or expanded upon with follow-up questions. Further in-depth work is needed to explore the emerging themes more thoroughly. It is not possible to tell how far responses may have been influenced by interviewer technique. Some participants gave only scaled responses, and did not provide examples. Had they given more detailed responses, this may have altered our findings. Participants who chose to give more detail may be unusual, and we should be careful about extrapolating from these.
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Conclusions England’s largest ever anti-stigma campaign – Time to Change – launched in 2009 and aims to change attitudes and behaviours towards people with mental illness (Henderson & Thornicroft, 2009, 2013). While changing negative attitudes is important, the aim of improving people’s experiences requires a focus on behaviour change. A onedimensional model linking stigmatising attitudes to discriminatory behaviours fails to adequately consider how discrimination differs in a range of contexts and relationships. If campaigns are to be effective, research is needed to gain a fuller understanding of the complex factors leading to experienced discrimination in social interactions. Through our analysis we suggest that more consideration of relationship types, particularly within families, will help to understand differences in discrimination experiences. Key factors identified in this study include expectations and strength of ties between the service user and others.
Declaration of interest The authors declare no conflicts of interests. The authors alone are responsible for the content and writing of this article.
References Angermeyer MC, Beck M, Dietrich S, Holzinger A. (2004). The stigma of mental illness: Patients’ anticipations and experiences. Int J Soc Psychiatr, 50, 153–62. Brohan E, Slade M, Clement S, et al. (2013). Development and psychometric validation of the Discrimination and Stigma Scale (DISC). Psychiatr Res, in press. Corker E, Hamilton S, Henderson C, et al. (2013). Mental health service users’ experiences of discrimination in England 2008–11. Br J Psychiatr, 202, s58–63. Corrigan P, Matthews A. (2003). Stigma and disclosure: Implications for coming out of the closet. J Ment Health, 12, 235–48. Corrigan PW, Markowitz FE, Watson AC. (2004). Structural levels of mental illness stigma and discrimination. Schizophrenia Bull, 30, 481–91. Dickerson FB, Sommerville J, Origoni AE, et al. (2002). Experiences of stigma among outpatients with schizophrenia. Schizophrenia Bull, 28, 143–55. Goffman E. (1963). Stigma: Notes on the management of spoiled identity. Engelwood Cliffs (NJ): Prentice-Hall. Graneheim UH, Lundman B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105–12. Hamilton S, Pinfold V, Rose D, et al. (2011). The effect of disclosure of mental illness by interviewers on reports of discrimination experienced by service users: A randomized study. Int Rev Psychiatr, 23, 47–54. Henderson C, Corker E, Lewis-Holmes E, et al. (2012). One year outcomes of England’s time to change anti-stigma programme for service user-rated experiences of discrimination. Psychiatr Serv, 63, 451–7. Henderson C, Thornicroft G. (2009). Stigma and discrimination in mental illness: Time to change. The Lancet, 373, 1928–30. Henderson C, Thornicroft G. (2013). Evaluation of the time to change programme in England 2008–2011. Br J Psychiatr, 202, s45–8. Kleinman A, Hall-Clifford R. (2009). Stigma: A social, cultural and moral process. J Epidemiol Commun Health, 63, 418–19. Lasalvia A, Zoppei S, Van Bortel T, et al. (2012). Global pattern of experienced and anticipated discrimination reported by people with major depressive disorder: A cross-sectional survey. The Lancet, 381, 55–62. Rose D, Willis R, Brohan E, et al. (2011). Reported stigma and discrimination by people with a diagnosis of schizophrenia. Epidemiol Psychiatr Sci, 20, 193–204.
DOI: 10.3109/09638237.2014.880408
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Sayce L. (1998). Stigma, discrimination and social exclusion: What’s in a word? J Mental Health, 7, 331–43. Thornicroft G, Brohan E, Rose D, et al. (2009). Global pattern of experienced and anticipated discrimination against people with schizophrenia: A cross-sectional survey. The Lancet, 373, 408–15.
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Thornicroft G, Kennedy R. (2009). Shunned. Discrimination against people with mental illness. J Occup Psychol, Employ Disabil, 11, 56. Thornicroft G, Rose D, Kassam A, Sartorius N. (2007). Stigma: Ignorance, prejudice or discrimination? Br J Psychiatr, 190, 192–3. Wahl OF. (1999). Mental health consumers’ experience of stigma. Schizophrenia Bull, 25, 467–78.
ORIGINAL ARTICLE
Discrimination against people with a mental health diagnosis: qualitative analysis of reported experiences Sarah Hamilton1, Elanor Lewis-Holmes2, Vanessa Pinfold1, Claire Henderson2, Diana Rose2, and Graham Thornicroft2 The McPin Foundation, London, UK and 2Health Service and Population Research Department, Institute of Psychiatry, King’s College, London, UK
Abstract
Keywords
Background: Discrimination towards people with a mental health diagnosis has public health implications. Recently, efforts have been made to tackle discrimination through campaigns and education. Understanding experiences of discrimination is vital in targeting efforts effectively. Aims: The study aimed to explore experiences of reported discrimination described by service users in a national survey in England. Method: Structured telephone interviews were conducted with 537 mental health service users, randomly selected from five National Health Service Trusts in England. Interviews asked about experiences of discrimination in different life areas. Twenty-three interviews were audiorecorded and qualitatively analysed to develop a typology of discrimination experiences. Results: We identified seven types: organisational decisions; mistreatment; social distancing; stereotyping; lack of understanding; dismissiveness; and over-protectiveness. Conclusions: Discrimination should be understood as occurring within social relationships and influenced by expectations of contact within these relationships. A better understanding of these processes can help target more effective messages in anti-discrimination campaigns.
Discrimination, mental illness, stigma
Background The concept of stigma has been widely discussed and well developed in relation to mental health, building from the work of Goffman (1963). In contrast the concept of discrimination is less satisfactorily established (Thornicroft, 2007). In the last 15 years, researchers have begun to ask people with mental health problems about their day-to-day experiences of discrimination, leading to a re-evaluation of the concept (Angermeyer et al., 2004; Corrigan & Matthews, 2003; Dickerson et al., 2002; Rose et al., 2011; Wahl, 1999). Definitions used in discrimination research vary from broad terms like ‘‘unfair treatment’’ (Sayce, 1998) to legal definitions which limit behaviours studied to particular settings, for example employment practices (Corrigan et al., 2004). Studies often refer to ‘‘perceived discrimination’’, a term criticised as shedding doubt on people’s reports, as somehow different from ‘‘objective’’ discrimination, and portraying participants as over-sensitive (Sayce, 1998). However, the emphasis it places on how behaviours are understood highlights difficulties in linking stigmatising attitudes in one person with the experience of discrimination by another.
Correspondence: Ms Sarah Hamilton, The McPin Foundation, 32-36 Loman Street, London SE1 0EG, UK. E-mail: sarahhamilton@ mcpin.org
History Received 1 May 2013 Revised 10 December 2013 Accepted 18 December 2013 Published online 7 February 2014
Studies show that mental health discrimination is identified most frequently as occurring in interpersonal interactions with family being consistently reported as a primary source of discriminatory behaviours (Corker et al., 2013; Henderson et al., 2012; Lasalvia et al., 2012; Thornicroft et al., 2009; Thornicroft & Kennedy, 2009). This may be due, in part, to high levels of social exclusion, resulting in more social contact with family members than other potential sources (Angermeyer et al., 2004). It is also likely that discrimination takes different forms depending on the setting and social relationship in which it occurs. For example, friends may discriminate by avoiding social contact. Organisations may discriminate through systems which exclude people with mental health problems, for example, from holding positions of authority. There is a need, therefore, to consider processes and social context in developing an understanding of how behaviours are experienced as discrimination and their impact on people’s lives. Kleinman & Hall-Clifford (2009) challenge researchers to explore the way that stigmatising behaviours impact on individuals within local networks, by combining quantitative and qualitative methods (Rose et al., 2011). In this article, we offer insights that may help researchers in meeting this challenge by using qualitative methods to explore the kinds of behaviour identified by people with mental health problems as discriminatory within various relationships and contexts. The study is exploratory, using a small body of data collected
20 14
J Ment Health Downloaded from informahealthcare.com by Nyu Medical Center on 05/28/15 For personal use only.
1
Discrimination in mental health
DOI: 10.3109/09638237.2014.880408
J Ment Health Downloaded from informahealthcare.com by Nyu Medical Center on 05/28/15 For personal use only.
as part of a larger, structured survey. As such, we aim to identify emerging issues from these analyses to be further explored in future research. In this study, we use the term ‘‘experienced discrimination’’ to focus on how behaviours are experienced by the participants. The questions used in the survey required participants to apply judgements about the meaning of, and the reasons for, others’ behaviours. The same behaviour may be experienced as discriminatory by one person, but not another. The judgements required in reporting discrimination are likely to be different in relation to a family member, a potential employer, or a healthcare provider, due to different expectations, roles and the nature and intimacy of their connection. Acknowledging and understanding these differences is crucial if campaigns are to effectively target discriminatory behaviours among different groups.
Methods A survey of 537 mental health service users was conducted in five NHS Trusts (mental health service provider organisations) in England, geographically spread across the North East, North West, South East, East of England and Midlands (Corker et al., 2013). Structured telephone interviews were used to measure the occurrence of discrimination in a range of life areas. The study received approval from Riverside NHS ethics committee. A random sample of people receiving specialist mental health care was selected from each participating Trust’s patient database. Eligibility criteria were a diagnosis of a mental illness; aged 18–65; and living in the community, i.e. not in prison or hospital. Care teams reviewed the sample to confirm eligibility and remove individuals felt to be at risk of distress from receiving an invitation. Potential participants were mailed information about the study and a consent form. Individuals wanting to take part returned a signed consent form and provided a contact telephone number. The Discrimination and Stigma Scale (DISC-11) is a structured interview, administered over the telephone (Thornicroft et al., 2009), consisting of questions about experiences of negative and positive discrimination. Items cover 21 life areas, including family, social life, employment, neighbours, police, and health services. Further information about the development, content and psychometric properties of the measure are available elsewhere use (Brohan et al., 2013). Respondents were asked to describe any discrimination experiences and rate them. Interviewers probed and clarified these examples. Interviews were conducted by interviewers trained in administering the DISC-11. Two-thirds of the interviewers had personal experience of mental health problems, and the remainder had a personal or professional interest in mental health, including carers. Participants were randomly allocated to interviewers (Hamilton et al., 2011). A subsample of 23 interviews was audio recorded, with participants’ consent, to (i) provide a quality check on the interviewing and (ii) provide a qualitative insight into participants’ responses to the questionnaire. This was 5% of the total sample, a proportion set as feasible in the timescale and sufficient
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Table 1. Demographics. Characteristic Male Female Age (years) Range Mean Employment Employed Volunteering Unemployed Retired Diagnosis Anxiety disorder Bipolar disorder Depression Personality disorder Schizophrenia Other Received involuntary treatment Yes No
Participants (n ¼ 23) 7 16 26–60 46.3 6 1 15 1 4 4 6 1 5 3 7 16
for the purpose of reviewing. These were conducted by 10 interviewers: seven service users and three non-service users. Each interviewer was asked to record the first three interviews they carried out where the participant was willing to be recorded. If a participant declined they were not recorded and the next participant was asked. The characteristics of the 23 participants included in the qualitative study are shown in Table 1. Analysis Recorded interviews were transcribed and analysed using a method of qualitative content analysis similar to that described by Graneheim & Lundman (2004). Meaning units were taken as the responses given to each questionnaire item. Coding was conducted by two researchers, one with personal experience of mental health problems. The process for developing codes was iterative, with each researcher independently identifying themes, discussing them together and revising them until agreement about codes was reached and a framework developed. All transcripts were then recoded using this framework. The analysis aimed to identify key characteristics of reported discrimination experiences, to identify common categories and differences. In some cases, participants gave a rating without providing more detail. However, most participants gave additional information which was coded and categorised. The seven types identified are not mutually exclusive; more than one could be used to describe a single incident or behaviour. In some cases, where the participant reported no discrimination they gave examples of positive experiences they had had in that context. These were also coded as they provide information about participants’ understanding of discrimination in relation to that item. Examples given below are used to illustrate these categories. Participants’ sex, age and primary diagnosis as reported by the participant are given after each quote.
90
S. Hamilton et al.
Since the qualitative content analysis is based on a limited number of recorded interviews the findings should be treated as exploratory. The findings presented in this paper address broad categories of discrimination type which were described by participants in distinct ways.
J Ment Health, 2014; 23(2): 88–93
there’s something seriously wrong in your head, that’s how they actually judge you [. . .] People judge you in a different way. (Female, 55, diagnosis not given) I’m open in the church that I go to that I’ve got mental health problems and people think you’re a slow learner (Male, 48, Bipolar Disorder)
Results Organisational decisions
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Three instances from three participants were categorised as disadvantages based on organisational decision-making. This category includes decisions which reduce or withhold access to organisational services or otherwise inequitably apply organisational decisions. They are distinct from other categories in that they are not attributed to the behaviour of an individual. Car insurance, motorbike insurance, anything insurance [. . .] because we’re penalized very badly for having mental health (Female, 47, Bi-polar Disorder) I had had some time off work with depression and anxiety and I felt I was going to lose my job . . . I was made bank staff rather than contractually employed, which means if I go off sick I don’t get paid. (Male, 56, depression and anxiety) Mistreatment Seven instances from four respondents were categorised as ‘‘mistreatment’’. Such examples of mistreatment included behaviours perceived as intended to cause emotional pain. Because I hear voices and sometimes when I’m not very well, I’ll talk to myself and people can be quite nasty and hurtful. (Female, 41, Personality Disorder)
Social distance Sixteen examples from 11 participants were categorised as social distance behaviours. In some cases these were explicit incidences of avoidance, but more often they were more general comments on the impact of disclosing a mental health problem to others. If people don’t know me and don’t know about the problems, they’ll talk to me quite happily. Once they’ve seen the problems or someone’s told them about me, they tend to be a bit more wary. (Male, 38, Depression) Stereotyping and being judged Participants rarely talked about people explicitly using labels. Instead they described impressions of being seen differently, or being the victim of judgements based on their diagnosis. Twenty-six instances from 15 respondents fitted this category. Well I think people that know that you have had mental health problems, they perhaps think to you, you know that,
Lack of understanding or support Seven participants’ responses referred to a lack of understanding or support about the condition. I don’t think people understand depression as much [. . .] (Female, 44, Depression)
Dismissiveness Five responses from four participants were categorised as dismissiveness. In these instances, participants talked about people not believing in the mental illness, or treating it dismissively. They were so dismissive of the whole mental health thing and the possibility that some people might be in particular need because they’ve got a mental health problem (Female, 60, Schizophrenia)
Over-protectiveness Seven responses from six participants described overprotectiveness by others. Despite perceiving this treatment as discrimination, in some cases, participants acknowledged that this behaviour may be motivated by the best of intentions, and even that it might have advantages. Nevertheless, they were identified as negative discrimination. I suspect I’m handled a little more carefully by the GP. [. . .] Rather than just sitting in the waiting room, they tend to have someone on the reception waiting for me. Which can be quite good! Demeaning, but you get seen to quick. (Male, 38, Depression)
Social relationships and discrimination The descriptions used by participants to describe the negative behaviour experienced were analysed for the common themes described above and then considered in relation to the specific relationships in which they were identified. Four relationship types were chosen for comparison as the ones where examples were most frequently given. These are family, friends, employers and neighbours. Family The survey supported previous findings in relation to discrimination by family; over half of respondents reported discrimination from their family because of their diagnosis (Henderson et al., 2012).
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Participants’ responses show two types of behaviour that were commonly reported. First, family was almost the only relationship in which dismissiveness was reported. Participants described families refusing to believe that mental illness was genuine, or that the participant suffered from it.
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When I told my sister I was getting harassed [. . .] she just didn’t believe me, says ‘it’s all in your head and [. . .] you’re not very well and you’ve been diagnosed with schizophrenia, so . . . (Female, 32, schizophrenia) The only other place where this was reported was in one participant’s conversation with fellow church-goers. There is no reason to think that family members are more skeptical about mental illness than others. Indeed, they are more likely to have witnessed the effect of acute mental illness. One explanation might be that family members are reluctant to accept the consequences and meaning of a diagnosis, and react by denying or dismissing it. Second, understanding and support were frequently mentioned, usually relating to positive, rather than negative behaviour. Frequently participants reported that it had taken time for their families to become supportive. I think they’ve learned to accept the problems I have so it’s not been so much of a problem [in the last year]. (Male, 38, depression) Participants’ descriptions of supportive families reveal their expectations of treatment from family members. Participants identify support and understanding as the norm for behaviour within such a relationship (i.e. the behaviour they think other people would experience) and respond to the question in relation to this expectation.
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Employers Twenty-four per cent of survey respondents reported discrimination when trying to find a job and 17% in keeping a job. Among employers, the most commonly described behaviour was stereotyping, for example through considering the participant to be incompetent or unsuitable for a job. One participant reported having been fired from three previous jobs as a result of her mental health problems. I said I was on tablets cause I had to tell them what medication I was on [. . .] and, erm, he just said I may not like it, so I said, well, I’ll be coming off ‘em, which was a lie actually [. . .] I had to lie to get the job really. (Female, 59, Depression) Four participants expressed the view that employers would not take on someone with a mental health diagnosis to explain decisions either not to seek work, or to conceal their diagnosis when applying for a job. Neighbours In contrast to friends and family, neighbours were much less likely to be aware of the mental health diagnosis, though they may have a general awareness of someone experiencing difficulties. Nevertheless, a quarter of the overall survey reported discrimination from neighbours. Only three specific examples of poor treatment by neighbours were given in the recorded interviews: two of these were categorised as mistreatment, both described as severe and explicit examples of harassment, while the third example was of social distance. [. . .] the girl next door, and then the street, was shouting get back to (name of local hospital ward) [. . .] and then I had stones threw at me window pane and that. (Female, 32 Schizophrenia)
Friends Again, over half of respondents in the overall survey reported discrimination from friends. The most common type of discrimination reported in relation to friends is social distance. Nearly half of participants talked about losing friends, or, in some cases, no longer having any kind of social life. My friends treated me like a hot potato when I was ill. (Female, 55, schizophrenia) I don’t have friends, me friends turn against us [. . .] in the last 3 years people have gone against us (Male, 36, diagnosis not known) As with family, several participants who had not experienced discrimination from friends nonetheless responded to this question in terms of a lack of social distance, indicating that participants tended to understand potential discrimination from friends in these terms. In contrast to family, participants mostly described a lack of understanding from friends, except from friends who also had experience of mental illness.
Discussion The examples given by participants represent behaviours that they judge to be discrimination. Observers may not assess the same behaviours in this way. The analysis presented here explores participants’ descriptions of these behaviours to elucidate the characteristics that lead to their judgement in different situations. In relation to the four groups discussed above (family, friends, neighbours, employers), participants identified different patterns of behaviour in response to the same question formulation. We suggest that a fuller understanding of these discriminatory behaviours will be based not only on perpetrators’ attitudes towards mental illness but also on the different roles and expectations involved in these relationships. While it may seem obvious to suggest that discrimination is manifested differently among the four groups discussed here, this is rarely discussed in studies of discrimination. A key theme emerging for each of these groups is people’s desire to distance themselves from the person with mental illness. In relationships where it is relatively easy to do so
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(e.g. friends) instances of physical distance are common. Employers and potential employers are able to enforce distance through firing or not hiring people with a mental health problem. Where this is less easily achieved (e.g. family) there may be a tendency to create distance from the condition instead, by denying its existence or dismissing it as easily overcome. Instances of mistreatment and harassment reported in relation to neighbours, in addition to being a direct attack upon the person concerned, may also be understood in terms of discouraging social contact, or even, at its extreme, in trying to drive people away from a neighbourhood, as in the instance described above. The analysis also draws out themes of support and empathy. In relationships where personal support is sought or expected, primarily friends and family, absence of such support is experienced as negative treatment. This interpretation is not mentioned in relation to more distant relationships such as neighbours. Expectations are thus crucial in interpreting the behaviours of others. However, support and empathy may also lead to a sense of overprotectiveness which can be perceived by the service user as a belief that they are incompetent or overly sensitive. Support and empathy can be both empowering and disempowering and indicates that at times efforts at positive discrimination or reasonable adjustment may in fact be perceived as negative. Finally, these findings demonstrate the complexity involved in linking discrimination to negative attitudes. While overprotection may be due to unfounded judgements about people with a mental health diagnosis, these may be very different from the judgements that lead to mistreatment. In addition, further research is needed to understand how the experience of behaviours as discrimination may be affected by internalised stigma, previous experiences and participant characteristics as these factors could not be explored in this study. Limitations of the study This study is exploratory, having drawn on a small body of data collected as part of a structured survey. Nevertheless, the data suggests a pattern of variation in the experiences and interpretation of behaviours reported as discriminatory which requires a more in-depth understanding. Our aim has therefore been to add to the literature and provide a starting point for further work in this area. The structured nature of the interview limited the extent to which participants could be encouraged to reflect explicitly on their understanding of concepts of discrimination. Our interpretation of people’s answers could not, therefore, be checked with participants or expanded upon with follow-up questions. Further in-depth work is needed to explore the emerging themes more thoroughly. It is not possible to tell how far responses may have been influenced by interviewer technique. Some participants gave only scaled responses, and did not provide examples. Had they given more detailed responses, this may have altered our findings. Participants who chose to give more detail may be unusual, and we should be careful about extrapolating from these.
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Conclusions England’s largest ever anti-stigma campaign – Time to Change – launched in 2009 and aims to change attitudes and behaviours towards people with mental illness (Henderson & Thornicroft, 2009, 2013). While changing negative attitudes is important, the aim of improving people’s experiences requires a focus on behaviour change. A onedimensional model linking stigmatising attitudes to discriminatory behaviours fails to adequately consider how discrimination differs in a range of contexts and relationships. If campaigns are to be effective, research is needed to gain a fuller understanding of the complex factors leading to experienced discrimination in social interactions. Through our analysis we suggest that more consideration of relationship types, particularly within families, will help to understand differences in discrimination experiences. Key factors identified in this study include expectations and strength of ties between the service user and others.
Declaration of interest The authors declare no conflicts of interests. The authors alone are responsible for the content and writing of this article.
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