Abstract
Objective:
To investigate whether people with schizophrenia experience discrimination when using health care services.
Methods:
A cross-sectional survey in 27 countries in centres affiliated to the INDIGO Research Network, using face-to-face interviews with 777 participants with schizophrenia (62% male and 38% female). We analysed the data related to health issues, including health care, disrespect of mental health staff, and also personal privacy, safety and security, starting a family, pregnancy and childbirth. Discrimination was measured by the Discrimination and Stigma Scale (DISC), which consists of 36 items comprising three sub-scales: positive experienced discrimination; negative experienced discrimination; and anticipated discrimination.
Results:
More than 17% of patients experienced discrimination when treated for physical health care problems. More than 38% of participants felt disrespected by mental health staff, with higher ratings in the post-communist countries.
Conclusions:
Mental health service providers have a key role in decreasing stigma in their provision of health care, and by doing more against stigmatizing and discriminating practices on the therapeutic and organizational level. This will require a change of attitudes and practices among mental and physical health care staff.
Introduction
Living with a mental disorder is related to a higher level of stigma, which has a great negative influence on recovery and outcome (Lasalvia et al., 2013; Thornicroft et al., 2009) and in other fields of social live (Major & O’Brien, 2005).
People suffering from schizophrenia have a higher mortality compared with the general population (Brown, 1997; Capasso, Lineberry, Bostwick, Decker & St Sauver, 2008; Harris & Barraclough, 1998), as well as a higher risk of physical illnesses (Fleischhacker, Meise, Günter & Kurz, 1994; Leucht, Burkard, Henderson, Maj & Sartorius, 2007). Studies of comorbidity with metabolic and cardiovascular diseases have been especially emphasized (de Hert, Schreurs, Vancampfort & van Winkel, 2009; Saha, Chant & McGrath, 2007). The fact that physical diseases are even more prevalent in people living in the community compared with those living in hospitals (Salokangas, 2007) supports the idea that patients are less likely to receive adequate care, or even have difficulty accessing general medical services (Maj, 2009; Prince, 2007). A survey among 200 people with schizophrenia in Hungary showed that only 56% of patients had ever used a general practitioner (GP), while 28% had wished to but did not receive that service (Harangozó, Döme & Kristóf, 2005).
Thornicroft, Rose and Kassman (2007) have recently reviewed the evidence related to the association between low rates of help-seeking behaviour of people with mental disorders and the poor quality of the attention to their physical health. The diagnosis of physical illness remains concealed probably due to the attribution of complaints about physical condition to a mental illness. Also no clear consensus exists as to which physician should be in charge of the prevention and care of comorbid physical illnesses, which leads to the fragmentation of medical care (Fleishhacker et al., 2008).
Studies about stigma in mental health professionals show several data that point out stigmatizing attitudes facing patients with schizophrenia and other mental illnesses in different cultures and countries (Arvaniti et al., 2009; Des Courtis, Lauber, Costa & Cattapan-Ludewig, 2008; Hori, Richards, Kawamoto & Kunugi, 2011; Lauber, Nordt, Braunschweig & Rössler, 2006; Loch et al., 2012; Nordt, Rössler & Lauber, 2006; Ucok, Sartorius, Erkoc & Atakli, 2004; Wahl, 1999). Stereotyped attitudes and attitudes of prejudice from health care staff towards patients with schizophrenia regarding their health may contribute to increased self-stigmatization, having at the same time a negative impact on the help-seeking behaviour for their health problems (Björkman, Angelman & Jönson, 2008; Horsfall, Cleary & Hunt, 2010).
There are scarce studies that have looked on how people with mental disorders experience stigma in health settings. They report that a negative discriminative attitude prevails towards patients with schizophrenia (Lawrie et al., 1998; Liggins & Hatcher, 2005; Wahl, 1999). Because these studies are limited, it is necessary to explore in a more detailed and standardized way, how patients perceive stigma and discrimination in medical services.
The main objective of this study is to investigate whether people with schizophrenia experience discrimination or anticipated discrimination when using health care services. We hypothesized that discrimination by health professionals and services exists and that this may contribute to the fact that patients underuse health services.
Methods
A cross-sectional interview study was conducted in 27 countries, led by G. Thornicroft in centres affiliated to the INDIGO Research Network, by use of face-to-face interviews with 732 participants with schizophrenia (62% male and 38% female) in 2006. The main findings of this research project and the detailed description of the methodology have already been published (Thornicroft et al., 2009). Also in 2006, further data were added from Hungary (n = 20) and Japan (n = 25), which increased the sample to 777 patients.
In the current study we analysed the survey data that related to health issues, including health care and dental care, disrespect by mental health staff, and provision concerning personal privacy, safety and security, starting a family, pregnancy, childbirth and avoidance by others. In addition, differences between post-communist countries (Bulgaria, Hungary, Lithuania, Poland, Romania, Slovakia, Slovenia, Tajikistan) and other countries (Cyprus, Finland, France, Germany, Greece, India, Italy, Malaysia, Netherlands, Norway, Portugal, Spain, Switzerland, UK) and between different forms of health care (inpatient, outpatient, home care, day care) were analysed. Discrimination was measured by the validated Discrimination and Stigma Scale (DISC), which consists of 36 items comprising three sub-scales: positive experienced discrimination; negative experienced discrimination; and anticipated discrimination. The scale was administered by an interviewer who asked the participants, for a series of domains, whether they have experienced discrimination because of their mental illness; what the direction (positive or negative) of such discrimination is; and how severe it is. The domains address key areas of everyday life and social participation, including work, marriage, parenting, housing, leisure and religious activities.
Statistical analyses were evaluated by SPSS (version 15) and SAS (version 9.2). Frequency tables were analysed by χ2 test and Fisher’s exact test (if more than 50% of the cells had counts less than 5). Associations between variables were analysed by Spearman rank correlations.
Results
Descriptive results
Most of the participants (537 out of 718) reported that they were not treated differently compared to other people for physical problems. Among those who reported different treatment, 47 (8.1%) experienced advantages and 123 (17%) disadvantages (Table 1).
Stigma, self-stigma and discrimination related to health issues (N = 777).
N/A = not applicable.
100% = those who answered the given question.
Only 55 patients had received a disadvantageous experience when treated with dental problems; a further 70 experienced advantages and 569 reported that they had not experienced any discrimination.
Approximately every fourth subject (183 out of 738) reported disadvantageous experiences in the field of personal privacy, only 22 experienced advantages and a further 533 did not report any discrimination.
The results were rather worse in the field of personal safety and security: 92 patients experienced strong, 59 moderate and 53 slight disadvantage. Most of the participants (473 out of 686) reported no discrimination in personal safety and security and only 12 experienced advantages (see Table 1).
The question ‘Have you ever been treated differently when wanting to start a family?’ was answered by only half of the subjects, namely 388 out of 777. However, 216 did not report any discrimination, 153 experienced strong (62), moderate (47) or slight (44) disadvantage, while 19 had an advantageous experience (Table 1).
Even fewer patients had any experience with pregnancy and childbirth: only 64 out of 777 answered the question. More than every fourth subject (17 out of 64) had a disadvantageous experience (strong: 11; moderate: 5; slight: 1), 44 found no difference and only three felt positive discrimination.
Among those, who experienced disadvantage when wanting to start a family, significantly more felt the need to conceal the diagnosis. Only 229 of the 777 subjects answered the question ‘Ever treated differently in being able to act as a parent?’ and many (101) felt disadvantages in this field.
Need for concealing the diagnosis was reported by 557 (a little: 242; a lot: 315) and only 208 felt free to disclose their diagnosis to others (Table 1).
The question ‘How much did you feel disrespected by mental health staff?’ was answered by 763 of the 777 subjects. More than half (465) did not feel disrespected, 174 reported a little and 124 a lot, and 228 did not experience disrespect by mental health staff at all (Table 1).
Avoidance by those who know about the diagnosis was reported by 426 (a little: 276; a lot: 150) out of 759 (Table 1); 333 subjects did not experience avoidance.
Age group and gender had no significant effect on the answers to any of the above questions.
Associations between discrimination related to physical health and discrimination related to other life fields
There was a significant association (p < .01) between disadvantages related to physical health and disadvantages related to friendship, treatment by family, keeping a job, travel visas, welfare benefits and pension, opening a bank account, voting in elections, religious practices, social life, treatment by the police, arranging payment for medical care, dental treatment, disrespectful treatment by mental health staff and a significant association (p < .05) in being treated differently in personal safety, security and personal privacy. There was no association with disadvantages to family and intimate/sexual relationships, dating, neighbours, finding a job, housing and homeless services. Interestingly, there was no association with self-stigma when people stop doing something important because of how others might respond to their mental health problem; nor was there an association with the experience of being avoided by others or with the need of concealing the diagnosis. Associations between discrimination related to physical health and discrimination related to other life fields are shown in Table 2.
Association between discrimination related to physical health and discrimination related to other life fields (N = 777).
Comparison of different forms of health services
A large proportion (42%) of the patients using home care services felt more discrimination related to personal safety and security compared to those using inpatient (36%), outpatient (27%) or day care services (34%) (χ2 = 27.4, p < .01). Similarly, patients using home care services felt more discrimination in personal privacy (44%) than subjects using other forms of health care (inpatient: 26%; outpatient: 27%; day care services; 27%; χ2 =27.9, p < .01).
Differences between post-communist and other countries
Slightly more than half (53%) of the 94 patients from the post-communist countries versus 41.5% of the 294 participants from other countries, felt discrimination when wanting to start a family. Severe discrimination was detected by 23% versus 14% of the participants in the post-communist and other countries, respectively (Fisher’s exact test, p = .02) (Table 3). Perceived disrespect was higher in the sample from the post-communist countries compared to the other countries (χ2 = 6.2, p = .05) (Table 3). Avoidance was marginally significantly lower in the post-communist countries (χ2 = 5.1, p = .08) (Table 3).
Some differences between post-communist and other European countries in level of discrimination and self-stigma (N = 777).
100% = those who answered the given question.
Discussion
More than 17% of patients experienced discrimination when treated with physical problems, which can contribute to inappropriate results when treating the physical symptoms of people with schizophrenia and also to patients avoiding medical services (Harangozó et al., 2005; Leucht et al., 2007; Mitchell & Mallone, 2006; Salokangas, 2007). Professionals in mental health services often believe that they do a lot to reduce stigma. Our data do not support this. More than 38% of participants felt disrespected by mental health staff, with higher ratings in the post-communist sample. This can contribute to the frequent avoidance of mental health services by people who need them (Corrigan, 2004). Overall, participants reported better experiences with dental treatment. According to these results, mental health services cause more stigma and discrimination than other medical services, which is in contradiction with some results in the literature that show less respectful attitudes of non-psychiatric staff (Björkman et al., 2008).
Several questions in the survey are indirectly related to medical services. Nearly 25% of participants with schizophrenia suffer from significant disadvantages in the field of privacy and nearly 30% had disadvantages related to personal safety and security, many of those being patients who use home care. Disadvantages in privacy also vary with different types of service. The results show that home care services often do not support social recovery and are felt to be intrusive by the patients.
About half of the respondents had no experience of wanting to start a family, and only 64 participants had any experience with pregnancy and childbirth, showing that many of the respondents had no chance of having their own family. Over a third (39%) of respondents experienced disadvantages when wanting to start a family, and about a quarter at pregnancy and childbirth. Discrimination when wanting to start a family was higher in the post-communist sample. Stigma and discrimination might increase difficulties when wanting to start a family.
Only 44% did not experience avoidance by those who knew about their diagnosis and only 27% did not conceal the diagnosis, showing a high level of experienced stigma, discrimination and self-stigmatization.
Differences in the ratings of the post-communist sample show more control over patients’ family plans and more disrespect by mental health staff, indicating higher social control over the lives of patients.
Conclusions
Stigma and discrimination are major risk factors for mental ill health, eroding empowerment and contributing to the poor prognosis of mental disorders (Vauth, Kleim, Wirtz & Corrigan, 2007). Some data and opinions support the idea that western psychiatry often provides treatment in a dehumanizing context lacking a holistic approach, which increases stigma, self-stigma and discrimination and also decreases empowerment and the possibility for patients to think about themselves as individual and unique human beings with unique human experiences (Rosen, 2006; Wetters, 2010). In the current study, stigma and discrimination were frequently experienced by people with mental illness when using health services, particularly mental health services. In this way, our data support the notion that services often increase the burden of mental health problems on patients and their families.
Mental health service providers could do much to prevent or reduce stigma by improving the practices of acute treatment and rehabilitation and by doing more to reduce stigmatizing and discriminating practices at the therapeutic and organizational level, following international guidelines (WHO, 2008).
From an ethical and social perspective, people with schizophrenia should not receive lower-quality health care than other citizens (Maj, 2009). Therefore, the authors recommend an integration of medical and psychosocial care and the establishment of standards for recovery-based routine medical practices in which anti-stigma strategies are planned, implemented and monitored. Psychiatrists (and other health professionals) should always remember that while providing treatment, they can either increase stigmatization or de-stigmatize their patients (Schlosberg, 1993). Recovery-based services are needed, where patients’ needs drive the efforts for treatment and rehabilitation, and assertive communication with staff and regular monitoring of staff behaviour may help to avoid stigmatization and discrimination that contributes to poor prognosis of mental disorder, loss of self-esteem and poor chances for recovery. Medical service providers who often focus on evidence-based interventions should recall that values and contexts are also important parts of effective treatment. Information obtained by qualitative research with the involvement of service users can be of great value in building mental health services.
Footnotes
Acknowledgements
The authors would like to thank the INDIGO study principal investigators Professor Graham Thornicroft, Dr Diana Rose and Professor Norman Sartorius. They would also like to thank the INDIGO study group: Austria: Professor Heinz Katschnig, Dr Marion Freidl. Belgium: Professor Dr Chantal Van Audenhove, Gert Scheerder and Alison Hwong. Brazil: Cecilia Villares, Fernanda de Almeida Pimentel, Valeska Janas Murier, Renata Tosta and Professor Miguel R. Jorge. Bulgaria: Mrs Galina Veshova, Dr Galina Petrova, Dr Vladimir Sotirov, Dr Svetlozar Vassilev and Dimitar Germanov. Canada: Dr Roumen Milev and Liane Tackaberry. Cyprus: Dr Yiannis Kalakoutas, Dr Maria Tziongourou. England: Professor Graham Thornicroft, Dr Diana Rose, Professor Norman Sartorius, Elaine Brohan, Dr Ann Law, Dr Richard Church, James Fisher, Dr Morven Leese, Rosalind Willis, Dr Anil Kumar, Aliya Kassam and Gabriele Schmid. Finland: Professor Kristian Wahlbeck, Joel Lillqvist and Dr Carita Tuohimäki. France: Dr Jean Luc Roelandt, Dr Jean Yves Giordana and Nicolas Daumerie. Germany: Dr Anja Esther Baumann, Harald Zäske, Julia Weber, Petra Decker, Professor Wolfgang Gaebel and Professor Hans-Juergen Möller. Greece: Dr Marina Economou, Christina Gramandani, Eleni Louki, Dimitrios Kolostoumpis, Dimitri Spiliotis and Dr Lambros Yotis. Hungary: Dr Judit Harangozo. India: Dr R. Thara. Italy (Verona): Alessia Cicolini, Antonio Lasalvia, Davide Maggiolo, Alessandro Ricci and Professor Michele Tansella. Italy (Brescia): Dr Giuseppe Rossi, Dr Michela Vittorielli and Dr Chiara Buizza. Lithuania: Dr Arunas Germanavicius, Natalja Markovskaja and Vida Pazikaite. Malaysia: Dr Chee Kok Yoon and Dr Nor Hayati Ali. Netherlands: Dr Jaap van Weeghel and Annette Plooy. Norway: Dr Jan Olav Johannessen and Sveinung Dybvig. Poland: Dr Anna Bielañska, Dr Andrzej Cechnicki and Hubert Kaszynski. Portugal: Dr Maria Vargas-Moniz and Liliana Filipe. Romania: Dr Radu Teodorescu. Slovakia: Marcela Barova. Slovenia: Dr Vesna Švab and Dr Mateja Strbad. Spain: Dr Blanca Reneses, Dr José Luis Carrasco and Professor Juan J. Lopez-Ibor. Switzerland: Professor Wulf Rössler and Dr Christoph Lauber. Tajikistan: Alisher Latypov. Turkey: Professor Alp Uçok and Dr Banu Aslantas. USA: Dr Richard Warner.
Authors’ Note
Two authors have been supported by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research scheme (RP-PG-0606-1053). The views expressed in this publication are those of the author(s) and not necessarily those of the National Health Service (NHS), the NIHR or the Department of Health. One of the authors is also funded through an NIHR Specialist Mental Health Biomedical Research Centre at the Institute of Psychiatry, King’s College London and the South London and Maudsley NHS Foundation Trust.
