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National Collaborating Centre for Mental Health (UK). Psychosis and Schizophrenia in Adults: Treatment and Management: Updated Edition 2014. London: National Institute for Health and Care Excellence (UK); 2014. (NICE Clinical Guidelines, No. 178.)

  • In March 2014, a correction was made by NICE to the wording of recommendation 1.1.3.3 to clarify that it is the hydrocarbons in cigarette smoke that cause interactions with other drugs, rather than nicotine.

In March 2014, a correction was made by NICE to the wording of recommendation 1.1.3.3 to clarify that it is the hydrocarbons in cigarette smoke that cause interactions with other drugs, rather than nicotine.

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Psychosis and Schizophrenia in Adults: Treatment and Management: Updated Edition 2014.

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6ACCESS AND ENGAGEMENT

This chapter has been updated for the 2014 guideline. The review of early intervention has been updated and is now included in Chapter 12, Teams and service-level interventions. Sections of the guideline where the evidence has not be updated since 2009 are marked by asterisks (**2009**_**2009**).

6.1. INTRODUCTION

**2009**Although there is great emphasis on clinical practice and service organisation to deliver effective clinical interventions, it is well known that there are significant social and ethnic inequalities regarding access to and benefit from such effective clinical interventions. Schizophrenia is likely to impact negatively on finances, employment and relationships, especially if the illness begins when the person is very young, which is a vulnerable time and when the adverse social impact of an illness can be most devastating. More attention is now rightly focused on ensuring early access to effective interventions for psychosis, to reduce periods of untreated psychosis, and also to ensure prompt and precise diagnosis, and quicker recovery to minimise social deficits, following the onset of illness.

There is substantial evidence that patterns of inequality regarding access to and benefit from treatment show some ethnic groups are disadvantaged and might benefit from prompt and precise diagnosis and intervention. Furthermore, some people from specific ethnic groups may fear services, or respond to stigma, or find that services do not understand their personal, religious, spiritual, social and cultural needs or their cultural identity. These needs are important for them to sustain and maintain a healthy identity.

6.2. ACCESS AND ENGAGEMENT TO SERVICE-LEVEL INTERVENTIONS

6.2.1. Introduction

Background and approach

Schizophrenia is known to be a devastating illness with significant social and psychological deficits, and it is crucial that service users receive treatments and services that are collectively sanctioned as appropriate approaches in the context of dominant ethical, clinical and legal frameworks of practice and service organisation. These frame- works and standards of care are informed by the evolving evidence base and expert opinion. African–Caribbean people in the UK have been shown to have a higher incidence of schizophrenia, while the treatment practices and service organisation for recovery have not been especially tailored to meet their needs (Kirkbride et al., 2006). South Asian people may also have a higher incidence of schizophrenia, but there is less compelling evidence (Kirkbride et al., 2006). Migrants, people living in cities, and those at the poorer and less advantaged end of society are also at risk (Cantor-Graae & Selten, 2005). Asylum seekers and refugees may face additional risks of poor mental health, but their experience, to date, has not been directly linked to a higher incidence of schizophrenia, although it is related to complex social and health needs among those developing schizophrenia (Royal College of Psychiatrists, 2007). More generally, culture is known to influence the content and, some would argue, the form and intensity of presentation of symptoms; it also determines what is considered to be an illness and who people seek out for remedy. Cultural practices and customs may well create contexts in which distress is generated; for example, where conformity to gender, age, and cultural roles is challenged.

Paradigms for quality improvement

The dominant paradigms for improved standards of care (including service organisation, effective interventions, and integrated care pathways and patterns of treatment received by ethnic groups and migrants) are the cultural psychiatry and equalities paradigms.

The cultural psychiatry paradigm tries to understand the cultural origins of symptoms, as well as: (a) how these symptoms are coloured when expressed across cultural boundaries; (b) which treatments are sanctioned; and (c) whether treatments them- selves, ostensibly evidence-based, are really culturally constructed solutions that work best for people sharing the same cultural norms and expectations of what constitutes illness and treatment. This endeavour is largely clinically motivated and responds to frontline evidence of a lack of appropriate knowledge and skills to benefit all people equally using existing guidelines and treatment approaches. It also draws upon sociology and anthropology as key disciplines.

The equalities paradigm is heavily underpinned by two national policies: Inside Outside (National Institute for Mental Health in England, 2003) and Delivering Race Equality (Bhui et al., 2004; Department of Health, 2003; Department of Health, 2005). These policies promote race equality through institutional and national programmes of actions with leadership from health authorities, mental health trusts and locally organised groups of stakeholders. These actions have not been specific to schizophrenia, but have certainly been motivated by the perceived crisis in the care and treatment of African–Caribbean people with schizophrenia, to which providers have not previously responded in a consistent and visibly effective manner. To date, results from the Care Quality Commission’s patient census (‘Count Me In’) indicate that policies and programmes in this area have not yet had the desired effects (Healthcare Commission, 2008). Perceived, individual and institutional prejudice and racism are also tackled within a broader equalities framework that addresses multiple forms of social exclusion and stigma (McKenzie & Bhui, 2007).

Cultural competence

Encompassed in the above two paradigms is the notion of cultural competence. A recent systematic review (Bhui et al., 2007) suggested that staff cultural competence training may produce benefits in terms of cultural sensitivity, staff knowledge and staff satisfaction. However, despite these promising findings, clinicians should be aware of the problems and controversies surrounding the definition or current understandings of cultural competence. Kleinman and Benson (2006) propose that a cultural formulation, based upon a small scale ethnographic study of the individual or on the DSM-IV cultural formulation, should be written for each patient. This cultural formulation can then be used to help determine and inform appropriate clinical interventions at the individual patient level. On the other hand, others, such as Papadopoulous and colleagues (2004), have suggested a more model-based approach, in which cultural competence is seen as part of a four stage conceptual map, wherein competence is informed by and informs three other processes, namely cultural sensitivity, cultural knowledge and cultural awareness. Whichever approach is taken, it is clear from the literature that cultural competence is now recognised as a core requirement for mental health professionals. Yet despite this increased awareness of its importance, little evaluative work has been done to assess the effects of cultural competence (at both an individual and organisational level) on a range of service user, carer and healthcare professional outcomes.

The 2009 guideline: how did the Guideline Development Group take account of race, ethnicity and culture?

For the 2009 guideline, the GDG did not attempt to examine all evidence relevant to race, culture and ethnicity, but instead focused on three main approaches. First, the two topic groups examining psychological/psychosocial interventions and pharmacological interventions reviewed evidence of benefits for ethnic groups. Second, where there was little evidence for specific effects for ethnic groups, included studies (for the recommended interventions) were reviewed to assess the ethnic diversity of the samples. This was done to establish whether the findings may be of relevance to ethnic groups as well as the majority population. Third, a specific topic group examining clinical questions related to access and engagement was formed with input from special advisers. In particular, the group requested that the literature search should cover specialist ethnic mental health services, that studies of service-level interventions should be examined to assess the ethnic diversity of the samples and that preliminary subgroup analyses of existing datasets should be conducted to inform research recommendations (see Section 6.2.11).

Limitations

The focus on race, culture and ethnicity in this 2009 guideline is welcomed and ground-breaking, but there is a limitation in the sense that all mental healthcare should be similarly reviewed, with a broader focus. Regarding this 2009 guideline, the methodologies developed have necessarily been targeted on some key issues and are not comprehensive in their actions. The 2009 guideline has also not been able to look at broader issues of pathways to care and effectiveness of psychological and pharmacological interventions on the basis of new and different levels of evidence. In part, this is because there is limited evidence. Furthermore, the 2009 guideline has not looked at issues that were not reviewed in the 2002 guideline. Therefore the following might be usefully accommodated in further reviews: matching the racial identity of the professional with the service user, ethnic matching (which is broader than matching racial identity and also encompasses cultural similarities), the impact of social exclusion and racism across generations, and the impact on young people of parents who have been socially excluded, subjected to prejudice and have a mental illness. All of these might seem imperative to service users from black and minority ethnic groups, but were not within the scope of the 2009 guideline. It is vital that future guideline updates attend to these broader issues, perhaps additionally with a guideline for these issues across disease areas.

On evidence and ethnicity

There are general concerns that current evidence relating to ethnicity has not come from adequate samples of ethnic groups (or any socially excluded group). There are also concerns regarding the hierarchy of evidence. First, in the absence of high- quality evidence, expert opinion and the dominant paradigms of treatment are given preference over other forms of evidence (for example, qualitative evidence); second, clinical trials are given preference over other study designs. Thus, existing institutionalised practices are sustained. Research studies propose that there are pharmacokinetic and pharmacodynamic differences in drug handling across migrant, national and ethnic groups, but our scientific understanding of these at an ethnic-group level does not permit generalised statements to be made about a group that can then be applied to the individual from that group. Psychological therapies may privilege psychologised forms of mental distress, perhaps excluding those experiencing social manifestations of distress that is not so easily recognised as having a mental component. However, this 2009 guideline could not fully address these issues.

Assuming that service users from black and minority ethnic groups can benefit from the same interventions delivered in the same way, the next question is whether black and minority ethnic groups have equal access to these effective interventions and whether they remain in contact with services. The access and engagement topic group focused on this broad question of engagement and retained contact with existing innovative services that aim to be flexible and should be culturally appropriate, namely assertive community treatment (assertive outreach teams), crisis resolution and home treatment teams, and case management. For this work, existing reviews of these services were reanalysed for data on ethnic groups with loss to follow-up and contact with services as the primary outcome. The next part reviews the literature for evidence that ethnic-specific or culturally-adapted services were effective or more effective at preventing loss to follow-up, dropout and sustained contact over time. The interventions reviewed are defined below.

Definitions

Assertive community treatment (assertive outreach teams)

The bipolar disorder guideline (NCCMH, 2006 [full guideline]) review of assertive community treatment (ACT) updated the review undertaken for the 2002 schizophrenia guideline, which was based on the review by Marshall and Lockwood (2002). This latter review identified the key elements of ACT as:

  • a multidisciplinary team-based approach to care (usually involving a psychiatrist with dedicated sessions)
  • care is exclusively provided for a defined group of people (those with serious mental illness)
  • team members share responsibility for clients so that several members may work with the same client and members do not have individual caseloads (unlike case management)
  • ACT teams attempt to provide all the psychiatric and social care for each client rather than referring on to other agencies
  • care is provided at home or in the work place, as far as this is possible
  • treatment and care is offered assertively to uncooperative or reluctant service users (‘assertive outreach’)
  • medication concordance is emphasised by ACT teams.

The bipolar disorder guideline (NCCMH, 2006 [full guideline]) adopted the definition of ACT used by Marshall and Lockwood (2002) which followed a pragmatic approach based upon the description given in the trial report. For a study to be accepted as ACT, Marshall and Lockwood (2002) required that the trial report had to describe the experimental intervention as ‘Assertive Community Treatment, Assertive Case Management or PACT; or as being based on the Madison, Treatment in Community Living, Assertive Community Treatment or Stein and Test models.’

ACT and similar models of care are forms of long-term interventions for those with severe and enduring mental illnesses. Thus, the review did not consider the use of ACT as an alternative to acute hospital admission. The review also excluded studies of ‘home-based care’, as these were regarded as forms of crisis intervention, and are reviewed with crisis resolution and home treatment teams.

Crisis resolution and home treatment teams

The GDG for the bipolar disorder guideline (NCCMH, 2006 [full guideline]) adopted the inclusion criteria developed by the Cochrane Review (Joy et al., 2002) for studies of crisis resolution and home treatment teams (CRHTTs) in the management of people with schizophrenia. Crisis intervention for people with serious mental health problems was selected by the bipolar disorder GDG for review and further analysis.

Crisis intervention and the comparator treatment were defined as follows:

  • Crisis resolution: any type of crisis-orientated treatment of an acute psychiatric episode by staff with a specific remit to deal with such situations, in and beyond ‘office hours’.
  • Standard care: the normal care given to those experiencing acute psychiatric episodes in the area concerned. This involved hospital-based treatment for all studies included.

The focus of the review was to examine the effects of CRHTT models for anyone with serious mental illness experiencing an acute episode when compared with the ‘standard care’ they would normally receive.

Case management

Given the variation in models of case management evaluated in the literature, the bipolar disorder GDG adopted the definition used in a Cochrane review (Marshall et al., 2000) where an intervention was considered to be ‘case management’ if it was described as such in the trial report. In the original review no distinction, for eligibility purposes, was made between ‘brokerage’, ‘intensive’, ‘clinical’ or ‘strengths’ models. For the purposes of the bipolar disorder guideline (NCCMH, 2006 [full guideline]) review, intensive case management (ICM) was defined as a caseload of less than or equal to 15. The UK terms ‘care management’ and ‘care programme approach’ were also treated as synonyms for case management. However, the review excluded studies of two types of intervention often loosely classed as ‘case management’, including ACT and ‘home-based care’.

Specialist ethnic mental health services (culturally specific or culturally skilled)

Specialist ethnic mental health services aim, by definition, to offer a culturally appropriate service and effective interventions to either a specific racial, ethnic, cultural or religious group or to deliver an effective service to diverse ethnic groups (Bhui et al., 2000; Bhui & Sashidharan, 2003). Models of specialist services have not been mapped recently but include cultural consultation service styles, and others outlined by Bhui and colleagues (2000).

6.2.2. Clinical review protocol

The review protocol, including the primary clinical question, information about the databases searched and the eligibility criteria can be found in Table 40. For the 2009 guideline, all studies were examined for information about ethnicity of the sample and numbers losing contact with services by ethnic group. The access and engagement topic group and special advisers developing the guideline proposed that a sample of which at least 20% of subjects were from black and minority ethnic groups could be considered ‘ethnically diverse’. It was assumed that a decrease in the number of participants leaving the study early for any reason indicated that the service was more engaging.

Table 40. Clinical review protocol for the review of services.

Table 40

Clinical review protocol for the review of services.

However, the GDG acknowledges that people may leave a study early for reasons other than a lack of engagement with the service.

6.2.3. Studies considered for review

Assertive community treatment (assertive outreach teams)

The bipolar disorder guideline (NCCMH, 2006 [full guideline]) included 23 RCTs of ACT: 13 versus standard care (N = 2,244), four versus hospital-based rehabilitation (N = 286) and six versus case management (N = 890). Studies included had to conform to the definition of ACT given above, and the inclusion criteria used by Marshall and Lockwood (2002) were widened to include populations with serious mental illness.

Of the 23 trials included in the bipolar disorder guideline (NCCMH, 2006 [full guideline]), nine included adequate information about ethnicity of the sample, although none reported outcome data by ethnic group. Therefore, the GDG conducted a sensitivity analysis of seven studies that had an ethnically diverse sample (see Table 41 for further information).

Crisis resolution and home treatment teams

The bipolar disorder guideline (NCCMH, 2006 [full guideline]) included seven RCTs of a CRHTT versus inpatient care (N = 1,207). Of these, three included an ethnically diverse sample, and one (MUIJEN1992) reported the number of people leaving the study early for any reason by ethnicity (see Table 42 for further information).

Case management

The bipolar disorder guideline (NCCMH, 2006 [full guideline]) review updated the review under- taken for the 2002 schizophrenia guideline and included 17 RCTs of case management: 13 versus standard care (intensive and standard case management [SCM]), two intensive versus standard case management, one enhanced case management versus standard case management and one case management versus brokerage case management. One trial (BRUCE2004) was excluded from the present review as 100% of participants had a diagnosis of depression. Of the 16 remaining RCTs, six included an ethnically diverse sample, and three of these studies (FRANKLIN1987; MUIJEN1994; BURNS1999) reported the number of people leaving the study early for any reason by ethnicity (see Table 42 for further information).

Specialist ethnic mental health services

For the 2009 guideline, papers were included in the review if they reported comparisons of UK-based specialist mental-health service interventions and/or initiatives. An inclusive definition of ‘specialist ethnic service’ was used to include those services that were either culturally adapted or tailored to the needs of individual patients, including any religious or ethnic needs. To measure improved access and engagement, the numbers of people from different black and minority ethnic groups remaining in contact with services (as measured by loss to follow-up and loss of engagement) was the primary outcome. All study designs were considered and papers were included even if a formal evaluation of the service had not been intended.

Papers were excluded from the review if: (a) they only reported descriptions of current service use by different black and minority ethnic groups, (b) did not report any comparison between services, and (c) were non-UK based or did not report loss to follow-up/loss of engagement within different black and minority ethnic groups. The reference lists of included papers and any relevant reviews were further checked for additional papers. The review was restricted to English language papers only. The search identified 2,284 titles and abstracts, of which 19 were collected for further consideration. All 19 papers were excluded because of lack of comparator, failure to report loss to follow-up and/or loss of engagement by ethnicity or were non- UK interventions.

6.2.4. Assertive community treatment or crisis resolution and home treatment teams versus control

Table 41Study information and evidence summary table for trials of ACT or CRHTTs

ACT versus standard careACT versus hospital-based rehabilitationACT versus case managementCRHTTs versus standard care
k (total N)5 RCTs (N = 684)1 RCT (N = 59)1 RCT (N =3 RCTs (N = 492)
Study IDAUDINI1994
BOND1998
BOND1990
LEHMAN1997
MORSE1992
CHANDLER1997BUSH1990FENTON1998
MUIJEN1992
PASAMANICK 1964
Diagnosis30–61% schizophrenia61% schizophrenia86% schizophrenia49–100% schizophrenia
EthnicityAUDINI1994: 26% African–Caribbean
BOND1998: 34% black, 2% Latino
BOND1990: 30% black
LEHMAN1997: 61% African–American (ACT), 84% African–American (control)
MORSE1992: 52.5% non-white (mostly African–American)
40% African–American (ACT), 55.2% African–American (control)50% blackFENTON1998: 14% black (CRHTTs), 28% black (control)
MUIJEN1992: 25% African–Caribbean (CRHTTs), 21% African–Caribbean (control)
PASAMANICK 1964: 32.9%
non-white
Outcomes
Leaving the study early for any reasonRR 0.63 (0.48, 0.82), k = 5, N = 684, I 2 = 0%

Excluding studies targeting homeless people: RR 0.62 (0.44, 0.89), k = 3, N = 416, I2 = 0%
RR 1.55 (0.28, 8.62), k = 1, N = 59RR not estimable (nobody left the study early)RR 0.73 (0.43, 1.25), k = 3, N = 492, I2 = 57%

Excluding PASAMANICK 1964: RR 0.66 (0.50, 0.88), k = 2, N = 374, I2 = 0%
Leaving the study early for any reason by black and minority groupAfrican–Caribbean: RR 1.12 (0.51, 2.45), k = 1, N = 43
Other non-white: RR 0.70 (0.21, 2.34), k = 1, N = 26

6.2.5. Case management versus control

Table 42Study information and evidence summary table for trials of case management

Standard case management (SCM) versusIntensive case management (ICM) versus standardICM versus SCM
Total number of studies (number of participants)1 RCT (N = 413)4 RCTs (N = 362)1 RCT (N = 708)
Study IDFRANKLIN1987FORD1995
HOLLOWAY1998
MUIJEN1994
SOLOMON1994
BURNS1999(UK700)10
Diagnosis56% schizophrenia66–83% schizophrenia87% schizophrenia or schizoaffective disorder
Ethnicity25% black, 2% Hispanic (SCM), 24% black, 6% Hispanic (control)FORD1995: 23% black and minority ethnic groups (ICM), 37% black and minority ethnic groups (control)
HOLLOWAY1998: 51% non-white (ICM), 57% non-white (control)
MUIJEN1994: 29% African–Caribbean, 2% Asian (ICM), 17% African–Caribbean, 5% Asian (control)
SOLOMON1994: 83% black, 3% Hispanic
29% African–Caribbean, 20% other black and minority ethnic groups (ICM) 26% African– Caribbean, 20% other black and minority ethnic groups (SCM)
Outcomes
Leaving the study early for any reasonRR 0.95 (0.74, 1.23), k = 1, N = 413,RR 0.76 (0.53, 1.09), k = 4, N = 362, I2 = 3.9%RR 0.56 (0.38, 0.82), k = 1, N = 708
Leaving the study early for any reason by black and minority ethnic group-Black: RR 0.74 (0.48, 1.23), k = 2, N = 121White: RR 0.73 (0.38, 1.40), k = 1, N = 267
African–Caribbean: RR 1.00 (0.53, 1.87), k = 1, N = 270
Lost contact with case manager--RR 1.71 (1.09, 2.69), k = 1, N = 708
Refused contact with case manager--RR 1.44 (0.55, 3.73), k = 1, N = 708
10

Subgroup by ethnicity data obtained from authors.

6.2.6. Secondary subgroup analyses

Given the paucity of evidence available to answer questions about the use of, and engagement with, services by people from black and minority ethnic groups, the GDG examined data from two service-level intervention studies conducted in the UK (Johnson et al., 2005; Killaspy et al., 2006). Patient-level data were made available to the GDG during the development of the guideline for the purposes of conducting secondary post hoc analyses to examine loss of contact and engagement with the service by ethnicity of the participants. These analyses were exploratory in nature and were intended to be purely hypothesis generating as opposed to generating evidence to underpin recommendations. Both studies were non-blind RCTs (see Table 43 for further details).

Table 43. Details of studies included in the secondary subgroup analyses.

Table 43

Details of studies included in the secondary subgroup analyses.

In both trials, participants categorised as black African, black Caribbean or black other were included in the black and minority ethnic subgroup. Additionally, in the North Islington Crisis study (Johnson et al., 2005) participants categorised as ‘mixed race’ were included in the subgroup analysis. As far as possible, the same procedures used in the primary papers were applied to the secondary analysis conducted for this 2009 guideline. For example, where a primary paper excluded missing data, the same procedure was subsequently applied to the present analysis. In addition to looking at engagement with services as measured by numbers losing contact, other measures of access and engagement (including contact with forensic services and engagement rating scales) were included in the present analysis. For continuous measures, because of the high potential for skewed data, Mann Whitney-U tests were applied to test for differences in the median values. For dichotomous outcomes, Chi-squared tests were applied where appropriate to test for differences with relative risks calculated for variables such as relapse and rehospitalisation. Although the main findings are summarised below, more detailed evidence tables for each subgroup comparison can be found in Appendix 23b.

REACT (Killaspy et al., 2006)

The findings can be summarised as follows:

  • In the whole sample, there was no difference in the proportion consenting to treatment in the group of participants allocated to ACT versus standard care. This finding was replicated in the subgroup of black and minority ethnic participants.
  • In the whole sample, ACT was associated with reduced loss to follow-up at both
  • 9 and 18 months. These findings were not demonstrated in the subgroup of black and minority ethnic participants.
  • In the whole sample, ACT improved service user engagement, but this finding did not hold for black and minority ethnic subgroup.
  • In both the whole sample and the black and minority ethnic subgroup, ACT
  • increased the number of contacts with mental health professionals at both 9 and
  • 18 months.
  • ACT had no effect on any measure of detention or hospitalisation (including involuntary admissions) in both the whole sample and the black and minority ethnic subgroup.

North Islington Crisis team RCT (Johnson et al., 2005)

The findings can be summarised as follows:

  • The crisis team intervention significantly reduced hospitalisation rates and number of inpatient bed days for both the whole sample and the black and minority ethnic subgroup.
  • The crisis team intervention had no impact on treatment compliance or numbers lost to follow-up, for both the whole sample and the black and minority ethnic subgroup.
  • The number of professional contacts, including contacts with GPs increased at 8 weeks and 6 months, and although the effect was not significant in the black and minority ethnic subgroup, the point estimate suggests this is because of a small sample size and resulting lack of statistical power, rather than the absence of an effect.
  • For both the sample as a whole and the black and minority ethnic subgroup, the crisis team intervention did not impact upon any measure of involuntary detention or status under the Mental Health Act.

6.2.7. Other sources of evidence

The review of ethnically-specific or adapted services yielded no UK-based studies that investigated loss to follow-up. However, some of the studies, although falling outside the guideline’s inclusion criteria, offer important lessons for clinical practice and research. Bhugra and colleagues (2004) demonstrated that black people in contact with mental health services via contact with either primary care or non-primary care services were equally as dissatisfied as a white group gaining access to services from outside primary care. The most satisfied group were identified as white people accessing mental health service following contact and referral from primary care. Mohan and colleagues (2006) showed, in a non-randomised study, that subsequent to the introduction of intensive case management, black patients were more likely to have greater contact with psychiatrists and nurses, while white patients more often had greater social care contact. Black patients were less likely to require hospital admission. Khan and colleagues (2003) showed in a small qualitative study that South Asian people receiving care from a home treatment team valued the intervention because of the cultural appropriateness in terms of language, religious needs, dietary needs and stigma, while hospitals were preferred for investigations (for example, blood tests).

A systematic review of interventions that improve pathways into care for people from black and minority ethnic groups was recently completed (Moffat et al., 2009; Sass et al., 2009). This was commissioned by the Department of Health through the Delivering Race Equality programme (established in 2005). The systematic grey literature search yielded 1,309 documents, of which eight fully met inclusion criteria. The main findings of the review indicated that:

‘The key components of effective pathway interventions include specialist services for ethnic minority groups, collaboration between sectors, facilitating referral routes between services, outreach and facilitating access into care, and supporting access to rehabilitation and moving out of care. Services that support collaboration, referral between services, and improve access seem effective, but warrant further evaluation. Innovative services must ensure that their evaluation frameworks meet minimum quality standards if the knowledge gained from the service is to be generalised, and if it is to inform policy’ (Moffat et al., 2009).

The review of mainstream published literature identified 2,216 titles and abstracts with six studies meeting the review’s inclusion criteria. In only one study was the initiative UK based, and included patients with depression as opposed to psychosis. The main findings of the review indicated that

‘There was evidence that interventions led to three types of pathways change; accelerated transit through care pathways, removal of adverse pathways, and the addition of a beneficial pathway. Ethnic matching promoted desired pathways in many groups but not African Americans, managed care improved equity, a pre- treatment service improved access to detoxification and an education leaflet increased recovery’ (Sass et al., 2009).

In addition to these findings, the review concluded that further research is needed to facilitate evidence-based guidance for the development of services.

6.2.8. Clinical evidence summary

Although there were no RCTs assessing the effectiveness of ACT for specific ethnic groups, five RCTs including an ethnically diverse sample indicated that when compared with standard care ACT interventions were effective in reducing loss to follow-up. When compared with standard care alone, CRHTTs were also effective at reducing loss to follow-up. Only one RCT (MUIJEN1992) included in the review permitted stratification of these effects by ethnic group. The positive findings from this RCT regarding reduced loss to follow-up held most strongly for Irish people, but was not convincing for African–Caribbean subgroups. However, it must be noted that because of the limited sample size no firm conclusions can be drawn from this one RCT alone. The review of case management included more RCTs permitting stratification of outcomes by ethnicity. Despite this, there was no consistent evidence for the effectiveness of either intensive or standard case management when compared with standard care and other service configurations.

Although the search of specialist ethnic mental health services undertaken for the 2009 guideline did not yield any eligible studies, recent reviews (Moffat et al., 2009; Sass et al., 2009) both grey and mainstream literature provided some interesting examples of how cultural adaptations can lead to improved outcomes. However it must be noted that even within these reviews, there was paucity of information, with the majority of included studies being non-UK based, thus limiting the generalisability to specific black and minority ethnic populations within the UK.**2009**

6.2.9. Linking evidence to recommendations

The systematic review for the 2009 guideline did not provide any robust evidence to warrant changing the service recommendations in the 2002 guideline for people with schizophrenia from black and minority ethnic groups. However, the GDG for the 2009 guideline and the special advisers recognised that there were a number of problems specifically faced by people from different black and minority ethnic groups, including:

  • **2009**People from black and minority ethnic groups with schizophrenia are more likely than other groups to be disadvantaged or have impaired access to and/or engagement with mental health services.
  • People from black and minority ethnic groups may not benefit as much as they could from existing services and interventions, with the aforementioned problems in access and engagement further undermining any potential benefits.
  • For all people with a first episode of psychosis or severe mental distress (including those from black and minority ethnic groups), fears about the safety of the intervention may not be appropriately addressed by the clinician.
  • Conflict may arise when divergent explanatory models of illness and treatment expectations are apparent.
  • Clinicians delivering psychological and pharmacological interventions may lack an understanding of the patient’s cultural background.
  • The lack of supportive and positive relationships may impact on the future engagement with services.
  • Comprehensive written information may not be available in the appropriate language.
  • Participants from black and minority ethnic groups may face additional language barriers with a lack of adequate interpretation services being available. Where such services are available, clinicians may lack the training to work proficiently with such services.
  • Lack of knowledge about the quality of access for specific black and minority ethnic groups and inflexible approaches to service delivery may hamper continued engagement with treatment.
  • There is often a lack of collaborative work between mental health service providers and local voluntary and charitable sectors that may have expertise in the provision of the best cultural or specific services.
  • Race, culture, ethnicity or religious background may challenge the clarity with which assessments and decisions regarding the Mental Health Act are undertaken, especially where clinicians do not seek appropriate advice and/or consultation.**2009**

Therefore, based on informal consensus, the GDG for the 2009 guideline made recommendations that address, in at least an initial way, the problems raised above. Additionally, where possible, specific problems faced by black and minority ethnic groups have been addressed in other parts of the guideline (for example, see Section 9.7.6).

The recommendations from the 2009 guideline remain but because of the change in population addressed by the 2014 guideline the recommendations have been changed to reflect this to say ‘people with psychosis or schizophrenia’

It was further acknowledged by the GDG for the 2009 guideline that all of the recommendations in this section should be viewed as a foundation step in a longer process including the provision of good quality research and development. In particular, the GDG highlighted that the following points specifically need addressing through this process of research:

  • **2009**RCTs of psychological and pharmacological interventions and service organisation have not been adequately powered to investigate effects in specific ethnic groups including African–Caribbean people with schizophrenia.
  • There are no well-designed studies of specialist mental health services providing care to diverse communities or to specific communities.
  • The effect of the cultural competence of mental health professionals on service user experience and recovery has not been adequately investigated in UK mental health settings.
  • English language teaching may be an alternative to providing interpreters to reduce costs and to encourage integration. This has not been tested for feasibility or outcomes.
  • The early diagnosis and assessment of psychosis and comorbid disorders across ethnic, racial and cultural groups needs to be systematically assessed, with research projects including adequate samples from different cultural and ethnic backgrounds. **2009**

Following publication of Service User Experience in Adult Mental Health (NICE, 2011), one recommendation about communication and provision of information, which was covered by that guideline, was removed.

6.2.10. Recommendations

6.2.10.1.

Healthcare professionals inexperienced in working with people with psychosis or schizophrenia from diverse ethnic and cultural backgrounds should seek advice and supervision from healthcare professionals who are experienced in working transculturally. [2009]

6.2.10.2.

Healthcare professionals working with people with psychosis or schizophrenia should ensure they are competent in:

  • assessment skills for people from diverse ethnic and cultural backgrounds
  • using explanatory models of illness for people from diverse ethnic and cultural backgrounds
  • explaining the causes of psychosis or schizophrenia and treatment options
  • addressing cultural and ethnic differences in treatment expectations and adherence
  • addressing cultural and ethnic differences in beliefs regarding biological, social and family influences on the causes of abnormal mental states
  • negotiating skills for working with families of people with psychosis or schizophrenia
  • conflict management and conflict resolution. [2009]
6.2.10.3.

Mental health services should work with local voluntary black, Asian and minority ethnic groups to jointly ensure that culturally appropriate psychological and psychosocial treatment, consistent with this guideline and delivered by competent practitioners, is provided to people from diverse ethnic and cultural backgrounds. [2009]

6.2.11. Research recommendations

6.2.11.1.

For people with schizophrenia, RCTs of psychological and psychosocial interventions should be adequately powered to assess clinical and cost effectiveness in specific ethnic groups (or alternatively in ethnically diverse samples). [2009]

6.2.11.2.

An adequately powered RCT should be conducted to investigate the clinical and cost effectiveness of CBT that has been culturally adapted for African–Caribbean people with schizophrenia where they are refusing or intolerant of medication.[2009]

6.2.11.3.

Studies of ethnically specific and specialist services and new service designs should be appropriately powered to assess effectiveness. Studies should include sufficient numbers of specific ethnic groups and be evaluated using an agreed high quality evaluation framework (Moffat et al., 2009).[2009]

6.2.11.4.

For people with schizophrenia from black and minority ethnic groups living in the UK, does staff training in cultural competence at an individual level and at an organisational level (delivered as a learning and training process embedded in routine clinical care and service provision) improve the service user’s experience of care and chance of recovery, and reduce staff burnout? [2009]

6.2.11.5.

An adequately powered proof of principle study should be conducted to investigate the feasibility of comparing language skills development for those with English as a second language against using interpreters. [2009]

6.2.11.6.

A study should be conducted to investigate engagement and loss to follow- up, prospective outcomes and care pathways, and the factors that hinder engagement. For example, ethnic, religious, language or racial identity matching may be important. This is not the same as ethnic matching, but matching on ability to work with diverse identities.[2009]

6.2.11.7.

A study should be conducted to investigate the use of pre-identification services, including assessment, diagnosis and early engagement, across racial and ethnic groups.[2009]

Copyright © National Collaborating Centre for Mental Health, 2014.
Bookshelf ID: NBK333005

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