Abstract
Background:
Existing knowledge about the cultural beliefs of black and minority ethnic (BME) communities in the UK regarding stigma and mental illness is limited.
Material:
Data were collected in 10 focus groups, five with service users and five with laypersons, from BME communities in London.
Discussion:
Thematic analysis identified that cultural beliefs regarding mental illness reflect four different voices present within the BME communities.
Conclusion:
The study revealed that cultural beliefs influencing both relationships with family and, consequently, help-seeking for individuals with mental illness must be considered in the development of anti-stigma interventions and when engaging communities around mental health.
Background
Social psychiatry suggests that cultural beliefs play an important role in shaping societal responses to people with mental illnesses, influencing stereotyping, service provision and help-seeking (Link, Phelan, Bresnahan, Stueve, & Pescosolido, 1999). Understanding cultural beliefs both within and across ethnic communities is also critical when designing interventions, such as anti-stigma campaigns, so that their message can reach diverse audiences. However, to date research about cultural beliefs of ethnic minorities regarding mental health is limited, especially outside North America.
In North America research conducted on the cultural beliefs of ethnic minorities typically identified perceived discrimination and stigma by the authorities and the medical establishment as a barrier to mental health care and a cause for underutilization of services, and this has continued to be the focus of this kind of research in recent years (Burgess, Ding, Hargreaves, Van Ryn, & Phelan, 2008; Gary, 2005; Grandbois, 2005). This type of stigma or perceived stigma can be considered ‘external’.
There is considerably less research or interest in research that identifies ‘internal’ stigma emanating from (and reinforced within) ethnic communities and families (internal is referring here to the community and should not to be confused with self-stigma), although some exceptions exist. For example Anglin, Link, and Phelan (2006) identified stigmatizing attitudes with some ethnic minorities and linked these attitudes to messages about mental illness communicated by family. Alvidrez, Snowden, and Kaiser (2008) found that concerns about stigma prompted black service users to avoid or delay treatment. Participants in this study grew up in environments where they learned that mental illness was a topic to be avoided and that mental health issues were to be kept within the family. Carpenter-Song et al. (2010) conducted an ethnographic study with 25 African American, Latino and Euro American individuals diagnosed with severe mental illness. African American and Latino participants reported non-biomedical interpretations of behavioural, emotional and cognitive problems, and were critical of mental health services. They also found that although participants across the sample experienced or expected social rejection, stigma was a particularly prominent theme in the narrative accounts of African Americans, for whom severe mental illness was considered to constitute private ‘family business’.
Research in the UK on cultural beliefs about mental illness is also dominated by research referring to ‘external’ stigma, particularly within the black Caribbean community. Several studies pointed to what their authors considered as inequalities in diagnosis, in particular increased diagnostic prevalence of psychosis (Boast & Chesterman, 1995; Davies, Thornicroft, Leese, Higginbotham, & Phelan, 1996; Dunn & Fahy, 1990) and treatment, such as compulsory admission (Callan & Littlewood, 1998; McGovern & Cope, 1991; Singh, Croudace, Beck, & Harrison, 1998) of members of this community by health services. Other studies describe mistrust or hostility towards the medical establishment as a result of perceived stigma (Littlewood & Lipsedge, 1981; McLean, Campbell, & Cornish, 2003).
Again however, there is considerably less research about ‘internal’ stigma within specific communities. Among the exceptions is a recent report of extended family members of South Asian people with mental illness in the UK, which identified feelings of guilt, shame and fear, and the need to hide mental illness from others (Rethink, 2010). The growth of national anti-stigma campaigns in the UK has raised awareness around the need to tailor large anti-stigma interventions in order to reach diverse communities (Rethink, 2010). This has been highlighted in a study by Knifton et al. (2010), which commented specifically on the Scottish ‘see me’ campaign and suggested that cultural beliefs about mental illness within minority communities are commonly neglected in efforts to address stigma (see also Fearn & Wyllie, 2005). Better understanding around beliefs associated with black and minority ethnic (BME) communities, however, could inform anti-stigma interventions and improve engagement around mental health issues among diverse communities.
This study explored these research questions, investigating perceptions of stigma among BME groups, as part of the evaluation of the Time to Change campaign. Time to Change is a national campaign in England aimed at tackling stigma and discrimination surrounding mental illness. One of the aims of the study is to explore ways of increasing the engagement of BME groups with the campaign. This study aimed to explore cultural beliefs about mental illness in three ethnic communities as well as the awareness and response of members of these communities to Time to Change.
This resulting paper focuses only on the first aspect of the study and has two aims: (1) to extend our knowledge about cultural beliefs surrounding mental illness held by the predominant BME communities in London; and (2) to analyse how these beliefs influence experiences of stigma and relationships with family for individuals with mental illness in these communities.
Methods
In order to investigate cultural beliefs surrounding mental illness, qualitative data was collected from 10 focus groups comprised of BME individuals living in London. Focus groups capitalize on communication between research participants in order to generate data and have been extensively used in cross-cultural research and work with ethnic minorities (Kitzinger, 1995). In addition to collecting data from several people simultaneously, focus groups are particularly sensitive to cultural variables, and explicitly use group interaction to capture dominant social norms (Kitzinger, 1995). They are also an effective way to ‘uncover the range and depth of experiences of health services users’ (Lehoux, Blake, & Daudelin, 2006, p. 2091), including among under-researched populations such as ethnic minorities (Esposito, 2001; McLean et al., 2003).
We recruited a diverse sample of participants, both in terms of ethnicity and experiences of mental illness. In the five service user and five layperson focus groups, the three predominant ethnic minority communities in London – South Asian, black African and black Caribbean – were represented, as well as individuals from other BME communities in London. South Asian participants included individuals who self-identified as Indian, British Indian, Asian and Kenyan-Asian. Black African participants included individuals who self-identified as Somali, African, British African and black African. Two focus groups with black African participants were comprised entirely of Somali individuals. Thus, when referring to these groups in the paper, they will be distinguished as Somali. Black Caribbean participants included individuals who self-identified as African-Caribbean and black Caribbean. Our assumption was that cultural beliefs surrounding mental illness would differ between BME communities, but we also wanted to explore similarities in beliefs across ethnic minority groups. It is important to recognize that ethnic categories do not necessarily reflect homogenous cultural beliefs, nor do these communities represent the entire range of beliefs surrounding mental illness in London. However, the emphasis on these communities presents the opportunity to examine similarities in cultural beliefs, experiences of stigma, relationships with family and help-seeking within several ethnic minority populations in London.
Participants were recruited from community organizations (both with and without a focus on mental health issues). Organizations were asked if they would be interested in collaborating with us to run a focus group, or willing to distribute a letter of invitation to participate in the study to individuals from BME communities.
Ultimately, we recruited the following 10 groups (see Appendix 1 for the demographic characteristics for each focus group 1 ):
Two groups (one of service users and one of laypersons) comprised primarily of individuals of South Asian background.
Two groups (one of service users and one of laypersons) with Somali participants.
Two groups (one of service users and one of laypersons) comprised primarily of individuals of black African and/or black Caribbean background. 2
Two groups of laypersons from various BME communities.
Two groups of service users from various BME communities (in order to increase the sample diversity and representation of potential discriminatory experiences, one of the groups comprised service users with other disabilities).
The focus groups investigated: (1) cultural beliefs, attitudes and behaviour towards individuals with mental illnesses within BME communities; and (2) their awareness of and response to Time to Change. Focus groups lasted an hour and a half on average, and were facilitated by members of the research team. The facilitators were assisted by experienced facilitators who were service users and had an ethnic minority background. Local translators/interpreters known to participants and aware of community issues were available to translate questions and responses during the group. The focus groups were audio-taped, with the permission of the participants, and fully transcribed.
Thematic and content analysis were used to analyse the data. The transcriptions were coded using NVivo software. Analysis involved four phases: (1) familiarization with focus group data, including reading transcripts and notes and/or listening to the audio dialogue to extract main themes and ideas; (2) thematic framework development, identifying the key issues and concepts present in the data; (3) indexing of the data, applying the thematic framework to all focus group dialogue; and (4) conducting the focused or axial coding, defining the main concepts and recurring themes present throughout the dialogue, and investigating associations and explanations for the findings. Initially, data were analysed for each focus group separately. This analysis revealed similarities in the ‘voices’ regarding mental illness across the different BME communities and across service users and laypersons (see further below). A secondary analysis of data from all the focus groups together was then conducted and the findings are reported in this paper. The study received the ethical approval of the King’s College London Ethics Committee.
Results
Service user and layperson attitudes and behaviours
One of our initial assumptions was that participants in the layperson focus groups would express their own attitudes towards people with mental illness, while service users would focus more on the experiences of being the recipient of such attitudes. In practice, many of the speakers from both groups discussed the attitudes and behaviour of other people, or simply ‘the people’, in their communities towards individuals with mental illnesses, as well as those of psychiatrists and other professionals. This provided insight into the way stigma is discussed as emanating from others, rather than individuals expressing or identifying their own (stigmatizing or non-stigmatizing) attitudes.
Four voices
Our analysis identified four different approaches to mental illness, defined by cultural beliefs and attitudes towards people with mental illness and towards treatment, represented among the focus group participants across BME communities. We refer to these approaches as ‘voices’. We use the term ‘voices’ because this captures the nature of the representation of beliefs or attitudes in a focus group, and in order to acknowledge the different type of discourse that is expressed in the public compared to the private arena (i.e. in focus groups compared to interviews) (Kitzinger, 1994).
The first of these, the ‘self-critical’ voice (‘self’ here refers to the community not to the person) was characterized by embracing biomedical conceptualizations of mental illness and treatment, and expressing highly critical views about traditional perceptions and beliefs from one’s own culture. Within this was an emphasis on the need to ‘educate’ communities.
The second, the ‘medical critical’ voice, was critical of western conceptualizations of mental illness and was often consistent with anti-psychiatry views. This voice was also critical of and emphasized professionals’ stigma against ethnic minorities, and inequalities in the diagnosis and treatment of people from these populations suffering from mental illness (what we referred to above as ‘external’ stigma).
The third was a ‘traditional’ voice. This voice was expressed by participants who were defensive of the validity of traditional methods.
The fourth, an ‘integrating’ voice, was expressed only by a small number of participants who tried to reconcile biomedical approaches with traditional ones in their conceptualizations of mental illness and treatment.
It is important to note that these voices were not always exclusive of each other and participants sometimes expressed more than one voice. In particular, some critical comments about the practices of the psychiatric system, either in general or with regard to its treatment of ethnic minorities, were made by participants who were also critical of cultural beliefs prevalent in their communities (see further below).
All four voices were identified in more than one ethnic group and the first two of them (the self-critical and the medical critical) were identified both within service user and layperson groups. Some were expressed more frequently than others. Noticeably, the self-critical voice was identified in nine of the 10 groups. The perceived influence of cultural beliefs on stigma, relationships with family and help-seeking are explored within the discussion of each voice below.
The self-critical voice
Many participants, both service users and laypersons, were highly critical of cultural beliefs and practices surrounding mental illness in their communities. The ubiquity of this critical approach is apparent in the high frequency of cognates for either ‘ignorant’, ‘stigma’ or ‘educate’ used by participants across groups. Words cognate with ‘ignorant’ or ‘stigma’ were used in nine out of the 10 focus groups (the group of participants with other disabilities being the only exception) a total of 84 times. Words cognate with ‘educate’ were used in the same nine groups a total of 76 times.
In some of the groups, participants explicitly argued that stigma or lack of knowledge or understanding surrounding mental illness is more of a problem in their communities than in non-BME communities. In the South Asian focus group with laypersons, one of the participants commented: ‘The English community have a stigma, yes, I can believe that, but not that much compared to the Asian community.’ South Asian service users also referred to the ‘lack of knowledge’ about mental health in their community. One of the participants in the focus group with Somali service users asserted: ‘Somalis are the worst community in terms of [norms relating to] mental health.’ Likewise, in the group of Somali laypersons, participants criticized the ‘lack of understanding’ of mental illness in their community. In a group of black African and black Caribbean service users, members commented about the ignorance that existed ‘in the community’ and about the stigmatizing perceptions ‘in our families’. However, the black Caribbean participants expressed fewer critical views about their communities than other ethnic groups.
Participants also referred to the specific contexts in which the lack of knowledge about, or stigmatizing attitudes and behaviour towards, mental illness were manifest. Some critical participants linked these attitudes and behaviours to perceptions or practices that were common in their communities. One Somali layperson commented that depression was not recognized as an illness in their home country: ‘Depression is something which is someone feeling sorry for themselves so it’s usually brushed off and not taken on.’ Another common belief cited was that the condition is incurable. As one of the participants, also from the Somali group, commented: ‘Back home, we used to believe once they get sick they never get better.’ Some participants were critical of beliefs of supernatural causes of mental illness, and of religious rituals aimed at removing possession by evil spirits when someone had an episode of mental illness, seeing them as something that belonged to the past:
Some people are certain to believe in exorcism; [they believe that] some sort of spirit has got in that person and that’s why this person is behaving like this and rather than giving him proper medical help, they call these religious people to get the ghost out of them, you know. They’re completely going in the wrong track. They completely misdiagnose what’s wrong with them. People need to understand the problem. You’d be shocked with the amount of ignorance that people have. They still believe in things that are probably centuries old. (Focus group of laypersons from various BME communities) We tend to believe mental illness is a weakness. It’s to do with spirituality, and your lack of faith in God, whatever. They always find a reason to blame it on, as opposed to just it being an illness… I was really shocked because I never looked at it that way. I looked at it as more modern. It’s an illness. It’s got to be treated. (Focus group of service users from various BME communities)
As the latter comment demonstrates, and contrary to previous research (Waxler, 1979), supernatural beliefs can be stigmatizing and can carry with them assumptions about moral failings on the part of the individual who suffers from mental illness.
The self-critical voice discussing family matters
Participants revealed expectations, and some also personal experiences, about how relationships with family members were affected when they or another family member who suffered from mental illness felt unwell. There was agreement across groups about the strong pressures that exist in families in their communities to maintain secrecy about the mental illness:
Unless it goes out of proportion, and you cannot really control it any more… the mother and father will try to hide it… and seek help themselves. It’s not really common to bring it up with everybody. (Focus group with Somali laypersons)
According to participants, having a member of the family with a mental illness could severely harm the family’s reputation and the marriage prospects of siblings. The family is likely to become the centre of gossip and ridicule and people may avoid interacting with them. One consequence of these norms was the pressure they put on individuals to try and hide their mental illness from the family:
Sometimes that’s why they don’t seek help early enough because they feel ashamed, they feel it is a weakness, they have to hide it: “We mustn’t tell the family, we mustn’t tell the community. The parents will be blamed”, whatever. (Focus group of service users from various BME communities)
If the nuclear family did find out about it, the challenge for both the individual and his family became how to conceal this knowledge from the extended family:
In the beginning I was afraid that someone might put me in a mental hospital [so I did not talk with my family about it] but then problems became noticeable so my family noticed. But with my extended family, I feel like I can’t tell them at all and I don’t want to tell them anything about my problem because I’m afraid that they will gossip about me and spread gossip. (Focus group of South Asian service users)
Similarly, when a participant in the group of laypersons from various BME communities was asked whether he would feel comfortable to discuss mental health problems with his family he replied: ‘Not extended family, just within ourselves, not extended one. Even in this country I wouldn’t do that.’ In the group of Somali service users, one participant commented: ‘If someone’s mad, they are a danger, insult maybe, disgrace to the family, so that’s why you have to hide him, don’t say anything.’
While some of the participants described this reality as a given, others, in line with the self-critical voice, expressed clear opinions that such norms were unacceptable, and stressed the damage that is involved in hiding mental illness. Participants suggested that hiding one’s problem and not discussing it with their families could only make things worse for that individual. On participant from the focus group with Somali laypersons said: ‘I don’t think we should be hiding them; I think we should look after them and care for them, and be proud of them.’
Keeping secrets from the extended family was not a simple task either, because some service users lived close to their extended family:
[When] living in an extended family sometimes there is little space ’cos there is so much activity going on, you need a safe place and maybe there are times when you just don’t feel safe because you don’t want to disclose what you are feeling and you just keep bottling it up. (Focus group with South Asian service users)
Some of the service users made an effort to maintain at least a ‘safe zone’ where they did not have to hide or disguise their mental illness:
To me, if someone comes to my house, that’s where I have to be free. If they are not comfortable with my situation, they have to go. I’m not going to hide a piece of paper that I am mentally ill, I’m not going to hide my medication because I’m mentally ill. I will just take it in front of them. If you are not comfortable, you get out. If I come to your home, and I’m taking these tablets, you can tell me to go. But in my house, that is my area where I have to go to be free. (Focus group with black Caribbean service users)
Views and experiences regarding relationships with the nuclear family were much more varied than with the extended family. On the one hand, there was a broad consensus that the nuclear family should support and care for any of their members who suffered from mental health problems:
The one group of people who should be supporting you is your family, and I think if you don’t have that you’ve got nothing. And that’s what could really take you over the edge. Because we are all looking, no matter what age we are, to be accepted by our families. And when you don’t have that, I think that can take one over the edge… in itself, apart from the doctors, and the nurses and the hospital and the fear that you’re having inside anyway. (Focus group of service users from various BME communities)
However, people had different perceptions or personal experiences regarding the actual attitudes of the rest of the family when one of their relatives had a mental illness.
Some service users reported having a supporting and caring family, and some of the carers described their commitment to and treatment of relatives with mental health problems. One participant in the South Asian laypersons focus group stated more generally that Asian families ‘will mostly stand by whoever it is in the family that is going through that, that’s something which is quite universal in the community’.
However, some participants described much less supportive experiences, which in some cases ended in disconnecting ties with one, several, or all of their family members. Some of them attributed such family reactions to the norms in their communities that the family responsibility for people with mental illness was not unlimited:
At the beginning, it’s the responsibility of the family. They try traditional things, and when these things don’t improve his mental illness people will give up. So the person will be wandering in the streets, so back home many people are in the streets. And this is normal for the community. (Focus group with Somali laypersons)
Others pointed to rifts between the family and the individual with mental health problems due to disagreements about approaches to deal with the situation:
Family is… supposed to be a source of comfort but most of the time they are not, because a lot of people have complained about their own families calling the police on them, calling the social worker, putting them under section. Because it’s my sister that called the hospital, and I’m on section… because they’re the ones that live with you. And when the psychiatrists ask your sister, they’ll take their word. They won’t take your word. So sometimes, if you’ve got family like that, you are better off away from them. (Focus group of black African and black Caribbean service users)
This speaker went on to argue that calling on the authorities to hospitalize people with mental illness is a typical (and unnecessary) action in her community, a result of perceiving anyone who is mentally ill as dangerous. Although we emphasize this further below, it is important to note here that such reactions are not exclusive to families of ethnic minorities and exist in some majority families as well (Thornicroft, 2006, p. 180; see also Rose et al., 2011).
Other voices
As noted, even though the self-critical voice could be identified in most of the groups it was not the only voice. The other voices are presented here more briefly, mainly because they were expressed less frequently and also because some of them, in particular the medical critical voice, have been discussed before in the literature (this is what we referred to above as external stigma) (Littlewood & Lipsedge, 1981; McLean et al., 2003).
Critical comments about the psychiatric system or about psychiatric staff were made in six of the groups (the two black African and black Caribbean groups, the two South Asian groups, the Somali service users focus group and the group of services users from various ethnic minority backgrounds), and in two of them – the service user and layperson groups with participants from various BME communities – criticism of the psychiatric system dominated much of the discussion. ‘Anti-psychiatry’ views also included denial of the authority of medical staff to diagnose a condition as a mental illness; arguments against the labelling nature of the process; suggesting that the aim of psychiatric medication was to neutralize patients (rather than cure them); and pointing to the disregard of psychiatrists to some of the side effects of psychiatric medications. There were also more specific criticisms, in particular by participants from black Caribbean communities, regarding higher rates of diagnosis and treatment of ethnic minorities. 3
A third, ‘traditional’, voice, was expressed by participants in three layperson groups (the Somali, the South Asian the mix ethnic minority background - one person in each group). These participants did not accept the general criticism of the use of religious rituals in order to tackle mental illness, and defended traditional models. One speaker from the Somali layperson group referred to the attacks of some of his colleagues upon religious forms of treatment:
I’m going to disagree with my colleagues. They tend to follow the Eurocentric way of thinking. You can’t leave people like that. We have never had any research on how effective are our ways of dealing with mental health… This community, this nation [used these methods] for 1000s of years, but we seem to be abandoning all of it, just throwing it on the dustbin saying look we have got a new way of doing this. (Focus group with Somali laypersons)
Finally, three participants in the same three groups (the Somali, the South Asian and the mixed ethnic minority background) expressed an ‘integrative’ voice. Their comments suggested that the traditional models of mental health and biomedical ones are legitimate approaches, each working for different people or in different situations, and each available to be tried if the other method did not work. For example, this is how a participant in the group of Somali laypersons endorsed the use of a combination of medical and spiritual methods:
I’ve been looking after my brother for 14 years. He didn’t want the medicine, he didn’t believe the medicine was working, so I had to try some other ways to meet his needs, even though medication is number one, the priority, but at the same time why not try also spiritual methods, I feel like we have to move heaven and earth for our loved ones to get better. (Focus group with Somali laypersons)
Discussion
This study examined cultural beliefs surrounding mental illness, and how experiences of stigma impact on relationships with family and help-seeking behaviours. The paper identified four voices of BME communities regarding how people with mental health problems are being viewed and treated by others and how they should be viewed and treated by others. Two of these voices in particular, the self-critical voice and the medical critical voice, deserve further discussion.
Some of these voices are consistent with previous studies (Carpenter-Song et al., 2010; Littlewood & Lipsedge, 1981; McLean et al., 2003). In particular, this study identified a medical critical voice, which denounces various aspects of the established psychiatric system, especially its dealing with ethnic minorities in terms of both diagnosis and treatment. This voice demonstrates the experience of external stigma across the communities included in the study, and at times is representative of anti-psychiatry perspectives, which previous research has identified among ethnic minority communities (Dunn & Fahy, 1990). Participants identified inequalities in diagnosis, particularly psychosis, and treatment. These experiences also echo previous research, particularly relating to higher rates of diagnoses of psychosis among BME groups as well as compulsory admission (Boast & Chesterman, 1995; Davies et al., 1996; Dunn & Fahy, 1990; McGovern & Cope, 1991; Singh et al., 1998). This finding that external stigma compromises the trust of ethnic minorities demonstrates how experiences of stigma impact on help-seeking behaviours and treatment. Ultimately, stigma from authorities or medical services can lead to the under-utilization of the medical system by ethnic minorities (Burgess et al., 2008; Gary, 2005).
Less frequently discussed in previous studies, however, is the self-critical voice. This was expressed in nine of the groups in this study, was highly critical of internal stigma of individuals with mental illness in the communities studied, and showed a tendency to embrace the biomedical mental health system. As discussed, these voices should not necessarily be identified with distinct groups of people, as some participants expressed both. However, they provide an indication of the multiple challenges that stigmatizing attitudes and practices create for service users.
One theme identified from participants criticizing traditional perceptions and beliefs surrounding mental illness was the need to educate the communities perpetuating this internal stigma. Participants suggested that mental health problems are not recognized as illnesses, and in some communities are seen as incurable, or stemming from supernatural causes, which may result in internal stigma towards individuals with mental illness in the community. This theme surrounding the perceived need to educate communities has also been recognized in previous research (Alvidrez et al., 2008; Rethink, 2010) and stems from the perception, identified by the participants, that internal stigma is communicated by the community or through the family, which previous research supports (Anglin et al., 2006).
In this paper we focused on the impact of ‘internal’ stigma on relationships with the nuclear and extended family. However, the different voices expressed in the focus groups suggest that, while for some service users their relationships with their families and other members of the community may be the major source of stress, for others it is their relationships with the medical establishment, while for still others it may be both. The latter outcome of being subject to combined external and internal stigma (perceived or experienced) is typically ignored in the literature, which, with regard to ethnic minorities, either focuses on external or, less often, internal stigma. The findings in the present study demonstrate that the multiple challenges that may be the outcome of both internal and external stigma should be acknowledged and addressed by future anti-stigma campaigns.
Another, more encouraging finding for future anti-stigma campaigns in this research is that there is a considerable degree of recognition not only by service users, but also by laypersons from these communities of the existence of stigmatizing attitudes and their damage. This suggests that there is some readiness for accepting anti-stigma messages within some ethnic communities, which is reinforced by previous findings (Knifton et al., 2010). In particular, there seems to be readiness to accept messages about the damage involved in pressures to hide mental illness. This may be a leading message in future anti-stigma campaigns.
Limitations
While the focus groups provided valuable data about social norms regarding mental health, there were some limitations to the study. Beyond the limitations of the qualitative method of focus groups to provide a measure of the frequency of different voices, these groups mainly captured the participants’ views of the attitudes of others rather than their own. It is also important to acknowledge that language barriers may have impacted on the data collected and the study findings. Further research, using primarily quantitative methods, could be conducted to provide a more accurate picture of the prevalence of stigmatizing views in each of these communities.
Many of these challenges and the ways of dealing with them are not unique to ethnic minorities, particularly as these communities’ perspectives are clearly not defined by ‘traditionalism’. It is important, when discussing the difficulties experienced by BME service users, not to assume that their ethnicity is the dominant factor in the challenges that they are facing. Many of the difficulties experienced by BME service users, for example stigma, are shared by non-minority service users as well (Rose et al., 2011).
Conclusion
This paper reveals how complex the communication about one’s mental illness to each of the various groups of people with whom he or she interacts (close family, extended family, other community members, or medical staff) can be for these different ethnic communities. It is another demonstration that ‘there is no known country, society or culture in which people with mental illness are considered to have the same value and to be as acceptable as people who do not have mental illness’ (Thornicroft, 2006, p. 180).
Footnotes
Appendix 1
Acknowledgements
This research was funded by the Big Lottery, Comic Relief and SHiFT (Department of Health).
We would like to especially thank Doreen Joseph who devoted a great deal of time to the planning, organization and facilitation of the focus groups. We also thank Chandra Shah for feedback on study design, translation and recruitment, and Abdi Gure, Patricia Chambers and Mahesh Amin for help with participant recruitment and translation. We thank Sue Baker (Time to Change), Maggie Gibbons and Paul Farmer (MIND), Paul Corry and Mark Davies (Rethink) for their collaboration on the evaluation, and Bettina Friedrich and Liz Corker for their comments on earlier drafts of the paper. GS, CH, SEL and DR are supported by a grant to Time to Change from Big Lottery and Comic Relief and a grant from SHIFT. GT, CH and DR are funded by an NIHR Applied Programme grant awarded to the South London and Maudsley NHS Foundation Trust, and GT and DR are supported by the 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. GT has received grants for stigma-related research in the past five years from Lundbeck UK and from the National Institute for Health Research, and has acted as a consultant to the UK Office of the Chief Scientist.