Introduction
Stigma is a complex phenomenon resulting by three social-cognitive structures: stereotypes, prejudices, and discrimination [Reference Henderson and Thornicroft1]. Stigma and discrimination can be an additional burden to people with experience of mental health problems, to the point that many feel like it adversely affects their lives more than the actual symptoms [Reference Angermeyer, van der Auwera, Carta and Schomerus2,Reference Zimmerman, Morgan and Stanton3]. Experiencing stigma or discrimination, both structural and interpersonal, is very common among people with mental health problems [4–6], as is the anticipation of negative responses to one’s mental illness [Reference Farrelly, Clement, Gabbidon, Jeffery, Dockery and Lassman5,Reference Üçok, Brohan, Rose, Sartorius, Leese and Yoon7].
Anticipation of stigma and discrimination has been found to be more common than the actual experience [Reference Farrelly, Clement, Gabbidon, Jeffery, Dockery and Lassman5,Reference Üçok, Brohan, Rose, Sartorius, Leese and Yoon7,Reference Thornicroft, Brohan, Rose, Sartorius and Leese8] and can even occur in absence of the latter [Reference Üçok, Brohan, Rose, Sartorius, Leese and Yoon7,Reference Prince9]. Anticipated stigma and discrimination have several detrimental consequences on the recovery process [10–13]. Quinn and Chaudoir [Reference Quinn and Chaudoir14] found that high levels of anticipated stigma predicted heightened psychological distress as well as more self-reported illness symptoms. Moreover, anticipated stigma and discrimination have been found to mediate the relationship between experienced and internalized stigma [Reference Quinn, Williams and Weisz15]. The overall consequence of discrimination is the reduction in achieving personal recovery, through the achievement of personal life goals, such as having a satisfying job or a supportive relationship [16–21].
Since 2007, the charities Mind and Rethink Mental Illness have been running Time to Change (TTC) (http://www.time-to-change.org.uk/), the largest ever program in England to reduce mental health stigma and discrimination. TTC aims to reduce stigma and discrimination by raising awareness on mental health, dispelling misbeliefs about mental disorders, promoting positive message of recovery through social media and mass-media, facilitating contact between people with and without mental health problems [Reference Henderson and Thornicroft1,22–26]. The TTC program consisted of several interventions, including a social marketing campaign, programs for specific target groups (e.g., medical students, trainee teachers and head teachers,employers), local anti-discrimination initiatives, activities to promote social contact and social inclusion of people with severe mental disorders, social contact events organized by a range of stakeholders, and the use of social media such as Twitter and Facebook.
As part of the program evaluation, a series of telephone interviews, called the Viewpoint Survey, was conducted annually between 2008 and 2014, with the primary objective of measuring discrimination experienced by service users [Reference Corker, Hamilton, Robinson, Cotney, Pinfold and Rose6,Reference Henderson, Corker, Hamilton, Williams, Pinfold and Rose24,Reference Sampogna, Bakolis, Robinson, Corker, Pinfold and Thornicroft27]. Consistent with the improvements in stigma-related knowledge, attitudes and intended behavior observed among the general public since 2009, these surveys showed an overall fall in the experience of discrimination between 2008 and 2014 and that fewer respondents stopped themselves from starting a relationship in 2014 compared to 2013 [Reference Corker, Hamilton, Robinson, Cotney, Pinfold and Rose6]. However, there was no clear pattern of change in terms of this or other responses to anticipated discrimination [Reference Robinson and Henderson28].
Mental health service users aware of TTC reported higher levels of confident behaviors, such as challenging and educating others [Reference Sampogna, Bakolis, Robinson, Corker, Pinfold and Thornicroft27], raising the question of whether awareness of TTC, in terms of having seen social marketing campaign material, or participation in TTC activities may affect responses to anticipated discrimination. If those aware of TTC are more willing to educate or challenge others, they may also be less likely to avoid doing things that are likely to involve disclosure of their mental health problem to others, and less likely to conceal their mental health problem in general; if so this is also likely to apply to those who have taken part in activities run by TTC. Awareness or participation in TTC might also reduce anticipated discrimination if it leads to an expectation that others will be aware of TTC and as a result behave in the positive ways promoted by the campaign, instead of in a discriminatory fashion. Therefore, in this paper we aim to test the following hypotheses:
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1. Mental health service users aware of TTC are expected to conceal their mental health problems from others less often, compared to those not aware of the campaign.
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2. Mental health service users actively participating in program activities are expected to report fewer levels of anticipated discrimination, in terms of not seeking employment, training or personal relationships.
Method
Data are taken from the Viewpoint Survey carried out in the period 2009–2014. This timeframe follows the launch of the social marketing campaign, and therefore enable us to assess the level of awareness of the TTC program. Participating mental health service users provided data on experienced discrimination and on responses to anticipated discrimination (i.e., concealment of one’s mental health problem and stopping oneself from starting personal relationships, or pursuing education or occupation), as well as socio-demographic and clinical characteristics.
Participants
Every year, a different sample was recruited by selecting five National Health Service (NHS) Mental Health trusts (service provider organizations). By covering different geographical regions as well as areas in each quintile of socioeconomic deprivation, we aimed for each sample to be representative of England’s population [Reference Glover, Robin, Emami and Arabscheibani29]. The methodology has been reported in detail elsewhere [Reference Corker, Hamilton, Robinson, Cotney, Pinfold and Rose6,Reference Sampogna, Bakolis, Evans-Lacko, Robinson, Thornicroft and Henderson22,Reference Henderson, Corker, Hamilton, Williams, Pinfold and Rose24,Reference Hamilton, Corker, Weeks, Williams, Henderson and Pinfold30].
Measures
Sociodemographic and clinical variables
Each year, sociodemographic and clinical characteristics were obtained, including: participant’s diagnosis, agreement with the diagnosis and perceived (dis-)advantage of being given the diagnosis. Also, length of contact with mental health services, experience of involuntary treatment, and current type of mental health care received were obtained. Answers were given based on predefined options, or, in case none of those were applicable, explained individually.
Experienced and anticipated discrimination
The Discrimination and Stigma Scale-12 (DISC-12) consists of 22 items on negative, mental health-related experiences of discrimination (covering 21 specific life areas, plus one for “other” experience), and four items concerning anticipated discrimination [Reference Brohan, Clement, Rose, Sartorius, Slade and Thornicroft31]. The items can be grouped in four subscales: Unfair Treatment, Stopping Self, Overcoming Stigma, and Positive Treatment [Reference Brohan, Clement, Rose, Sartorius, Slade and Thornicroft31].
In the Viewpoint Survey, the “Unfair Treatment” and “Stopping Self” subscales were included to measure experienced and anticipated discrimination, respectively. The subscale “Stopping Self” includes four items for evaluating not doing things in specific areas of life due to the expectation of stigma plus one item on general concealment of one’s mental illness. Responses are given on a four-points scale labeled “not at all,” “a little,” “moderately” and “a lot.” For the "Unfair Treatment" subscale, an additional “not applicable” option can be used where items relate to situations which were not relevant to the participant in the previous 12 months (e.g., in relation to being a parent) or in which a diagnosis could not have been known about.
TTC program awareness
One item in the Viewpoint survey evaluates the awareness of TTC. Answer options are “No,” meaning that one has not been aware of any aspects of TTC, and alternatively “Yes, I have seen some publicity for the campaign” or “Yes, I have participated in some of the activities.” In case participants indicate participation in program activities, they are asked to specify the type of participation.
Statistical Analysis
In order to explore socio-demographic characteristics of the sample, appropriate descriptive statistics (chi-square, Fisher’s exact test) were performed. The main outcome measure was the “Stopping Self” subscale of the DISC-12. Due to its psychometric limitations, the four items of the subscale were analyzed separately and managed as dichotomous variables (i.e., “no” response to anticipated discrimination vs. “some” response). Logistic regression models were used, and explanatory variables were added in a forward stepwise method, following Hamilton et al.’s approach [Reference Hamilton, Corker, Weeks, Williams, Henderson and Pinfold30]. In particular, the following explanatory variables were added: the TTC program awareness (categorical), sociodemographic, and clinical characteristics [Reference Hamilton, Corker, Weeks, Williams, Henderson and Pinfold30], experienced discrimination (continuous).
Missing values, that is, items left unanswered or refused to answer, were labeled as missing and included in the analyses. An interaction term between study year and TTC program awareness was added to the model. Study year was not included as a predictor per se, because the development of anticipated discrimination over time, that is, program years, had already been covered by previous research [Reference Corker, Hamilton, Robinson, Cotney, Pinfold and Rose6]. Statistical analyses were conducted using IBM SPSS Statistics 20 and Stata version 12.1.
Results
Between 2009 and 2014, 5,923 participants completed the survey. Response rates ranged from 7% (in 2009) to 11% (in 2011). All socio-demographic details are reported in Table 1. In the majority of the cases, respondents report to suffer from mood disorders (depression, 28.4%, n = 1,681; bipolar disorder, 20%, n = 1,185), followed by schizophrenia and schizoaffective disorders (15.4%, n = 915), anxiety disorders (9.2%, n = 547), and personality disorders (7.3%, n = 430).
Table 1. Socio-demographic characteristics of the sample.
Abbreviation: MH, mental health.
Most respondents (73.6%, n = 4,362) were not aware of any aspects of the TTC program. Exposure to publicity for the campaign was reported by 23.2% (n = 1,375). Participation in program activities was reported by only 2.6% (n = 155) (Table 1).
Most participants reported to generally conceal or hide one’s mental health problem (74.3%, N = 4,316), stopping themselves from applying for work (61.9%, n = 2,666) and from having a closer personal relationship (52.6%, n = 2,803).
Relationship Between TTC Campaign Awareness/Participation and Levels of Anticipated Discrimination
The majority of mental health service users actively participating in program activities did not reported anticipated discrimination in training and educational activities (vs. 45.6% in people not aware of the program, p < 0.000). On the other hand, those participating in the TTC activity reported in 52.9% of cases experiences of anticipated discrimination related to working (vs. 43.2% reported by users not aware of any aspects of the campaign, p < 0.000) and in personal relationships (52.3 vs. 46.0% in those not aware of any aspects, p < 0.000) (Table 2).
Table 2. Differences in anticipated discrimination according to the levels of TTC program awareness.
p <0.000=.
Unemployed/retired service users with a diagnosis of depression, bipolar disorder, or personality disorder were most likely to stopping oneself applying for work (Table 3).
Table 3. Univariate analyses.
Abbreviations: MH, mental health; RAD response to anticipated discrimination; TTC PA, Time to Change Program Awareness.
Impacts of Levels of TTC Campaign Awareness on Probability to Conceal
Service users who participated in program activities in 2013 were 46% less likely to conceal their mental health problems compared to service users with any other form of TTC program awareness in other study years (Confidence Interval, CI: 32.7–65.6%, p < 0.05). For the other years of the study considered, no significant associations between campaign awareness and concealment were found (Table 4).
Table 4. Logistic regression model.
* p < 0.005.
Moreover, regarding the concealment of mental disorder, service users who were male (CI: 25.7–42.5%, p < 0.001), affected by bipolar disorder (CI: 1.5–34.5%, p < 0.05), with previous involuntary admission (CI: 19.7–39%, p < 0.001) and active in religion (CI: 6.0–23.9%, p < 0.05) have a decreased probability of concealing their mental disorder (Table 3).
Other Factors Related to Responses to Anticipated Discrimination
Stopping oneself from applying for work was significantly associated with experienced discrimination in both finding (p < 0.001) and keeping (p < 0.001) a job. Concealing one’s mental health problems was significantly associated with a general experience of being shunned (p < 0.001). Stopping oneself from applying for education and training was significantly associated with experienced discrimination in education (p < 0.001). Stopping oneself from having intimate personal relationships was significantly associated with experienced discrimination in making and keeping friends (p < 0.001) as well as dating (p < 0.001).
Discussion
The present study is the first aiming to investigate responses to anticipated discrimination in a large sample of mental health service users participating to an anti-stigma program. In this study, being aware of the TTC program was found not to be a predictor of responses to anticipated discrimination. Only in 2013, a small percentage of participants reported active participation in the program activities, which was significantly associated with a reduced likelihood of concealing one’s mental health problem. It could be that such an effect is related to the different messages launched by the campaign over time; considering that in 2013 a video on the story of a mental health users affected by schizophrenia was shared on-line. This finding deserves more investigation since it could be that a specific activity released in that year could have reached more people.
Moreover, being aware of the TTC program was not associated with a reduction of stopping oneself from the pursuit of educational, occupational, or personal relationship opportunities. This finding must be considered carefully, since many factors may have an influence on the development of these responses, as explained by the model of self-esteem and self-stigmatization. In particular, Abiri et al. [Reference Abiri, Oakley, Hitchcock and Hall32] reported that people with greater insight of the mental health stigma could find it more difficult to limit their impact. It could be that anti-stigma programs are useful tool for improving positive coping strategies such as challenging and educating others [Reference Sampogna, Bakolis, Robinson, Corker, Pinfold and Thornicroft27], whereas the reduction of the levels of self-stigma might require more specialized psychosocial interventions [32–38].
In terms of socio-demographic predictors of responses to anticipated discrimination, this study found a higher likelihood of concealment in service users who were female and employed, confirming data by Farrelly et al. [Reference Farrelly, Clement, Gabbidon, Jeffery, Dockery and Lassman5]. We found that service users active in religion had a slightly lower likelihood to conceal their mental health problems. We know that religiosity and religious coping can have a positive impact on long term well-being of people with mental health problems and their family members [Reference Moreira-Almeida, Sharma, van Rensburg, Verhagen and Cook36]. This association between religiosity, as well as other related areas such as spirituality, and concealment has never been investigated previously, but this should be a useful area for future research.
Low level of concealment was reported by service users who had previously experienced involuntary treatment or access day care facilities. This finding is not in line with Rüsch et al. [Reference Rüsch, Brohan, Gabbidon, Thornicroft and Clement37], who found that disclosure appears to be harder for individuals with recent psychiatric inpatient treatment. Furthermore, this finding should be carefully explored in order to clarify the impact of involuntary treatments, levels of perceived coercion, style of clinical decision-making on the levels of anticipated discrimination in patients with severe mental disorders [38–42].
Educational and occupational level were significantly associated with stopping oneself from pursuing educational/working opportunities, this may be due to previous negative discriminating experiences [43–45]. It has been extensively reported that having an occupation creates a sense of confidence in people that empowers them to further pursue their educational development [Reference Rossi, Galderisi, Rocca, Bertolino, Rucci and Gibertoni46].
Finally, people suffering from affective disorders or personality disorders reported higher levels of anticipated discrimination related to educational activities and in stopping themselves in searching for these activities as found by Rossi et al. [Reference Rossi, Galderisi, Rocca, Bertolino, Rucci and Gibertoni46,Reference Druss47].
Strengths and Limitations
This study examined responses to anticipated discrimination in a sample that was much larger than samples used in previous research on the topic (e.g., [Reference Farrelly, Clement, Gabbidon, Jeffery, Dockery and Lassman5,Reference Üçok, Brohan, Rose, Sartorius, Leese and Yoon7,Reference Sinha, Collins and Herrman48]). However, a selection bias could have affected our study and limit the generalizability of findings. In particular, it should be noted that mental health service users experiencing or anticipating higher levels of discrimination were more prone to take part in the survey and are thus overrepresented, which would again limit the generalizability of the present findings [Reference Vidojević, Jočić and Tošković49].
Finally, due to the psychometric properties of the “Stopping Self” subscale, the use of an overall score was not recommended [Reference Brohan, Clement, Rose, Sartorius, Slade and Thornicroft31] and items were analyzed separately. This methodological choice limited options for precise statistical analyses as variance observed in the data could only be small, particularly with the short 4-point scale used. It must be considered that the use of single item measurement scales is not necessarily inferior to multiple item measurement [Reference Evans-Lacko, Little, Henderson and Thornicroft50,Reference Gardner, Cummings, Dunham and Pierce51]. It may be useful to develop a new assessment tool tailored on the evaluation of responses to anticipated discrimination, satisfying the common psychometric requirements [Reference Gabbidon, Brohan, Clement, Henderson and Thornicroft52].
Implications and Further Research
Based on our findings, being aware of the TTC anti-stigma program had no effect on the pursuit of life opportunities for mental health services users, and therefore there is the need to identify new strategies for challenging anticipated discrimination. In particular, it is necessary to develop interventions targeted to the reduction of anticipated mental health discrimination, for example, health professionals could be trained to address the anticipation of stigma and discrimination [53–59]. Moreover, these findings suggest further development of anti-stigma programs in order to promote a heightened sense of empowerment in service users, for example, encouraging the pursuing of specific areas in life.
Due to their high prevalence and adverse consequences, it is time that anticipated discrimination and related concepts such as self-stigma gains much-needed attention. This may be achieved if recommendations from ROAMER Consortium are followed as research in stigma and discrimination represent one of the most urgent priorities for research in psychiatry in the next years [60–63].
Acknowledgments
GT is supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South London at King’s College London NHS Foundation Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR, or the Department of Health. GT acknowledges financial support from the Department of Health via the National Institute for Health Research (NIHR) Biomedical Research Centre and Dementia Unit awarded to South London and Maudsley NHS Foundation Trust in partnership with King’s College London and King’s College Hospital NHS Foundation Trust. GT is supported by the European Union Seventh Framework Program (FP7/2007-2013) Emerald project.
Financial Support
The TTC evaluation was funded by the UK Government Department of Health, Comic Relief, and Big Lottery Fund.
Conflict of Interest
The authors have no conflict of interests to declare.
Data Availability Statement
The DISC measure is available subject to terms and conditions at http://www.kcl.ac.uk/ioppn/depts/hspr/research/ciemh/cmh/CMH-Measures.aspx. The Viewpoint dataset is not available. Data sharing would first require an application to the UK’s Health Research Authority, since the research team does not have the capacity to do now it considering that the Viewpoint survey has been discontinued.
Ethical Statement
The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.
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