Mental Illness Beliefs and Help-Seeking Strategies by African-descended UK-based groups

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16th Dec 2019 Dissertation Reference this

Tags: Mental Health

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Understanding Mental Illness Beliefs and Help-Seeking Strategies Utilised by African-descended UK-based groups

Contents

Word count

Declaration

Copyright Statement

Acknowledgements

Abstract

Introduction

Method

Search strategy

Inclusion criteria

Results

Quantitative findings

Formal help seeking

Semi-formal and informal help-seeking.

Qualitative findings

Formal support (accessing help from the GP)

Formal support (counselling and psychological therapy)

Quantitative and qualitative synthesis

Discussion

Conclusion

Abstract

Introduction

Materials and Methods

Participants

Measures

Mental-Illness Beliefs

Symptoms of psychosis

Perceived discrimination measure.

Socio-demographics

Recruitment

Procedure

Statistical Analysis

Results

Sociodemographic variables and descriptive statistics

Exploratory analyses

What proportion of schizophrenia-related experiences did participants attribute to mental health problems, side effects of medication and/or other factors?

What causal beliefs did participants have in relation to their mental health experiences?

What is the relationship between the IPQ-S timeline cyclical subscale and attitudes towards mental health services?

What is the relationship between IPQ-S timeline subscale and attitudes towards mental health services?

What is the relationship between personal blame and attitudes towards mental health services?

What is the relationship between emotional representation and attitudes towards mental health services?

Hypotheses-driven analyses

Hypothesis One: Treatment control, illness coherence and personal control will be positively associated with attitudes towards accessing help from services.

Hypothesis two: Consequences will be negatively associated with attitudes towards accessing help from mental health services.

Discussion

Conclusion

 Paper One: Systematic review.

A review of the sources of support sought by UK-based African-descended groups for

 psychological difficulties.

 

The following two papers have been prepared for submission to the journal ‘Ethnicity and Health’. Guidelines for authors can be found in Appendix One. The maximum word count for the journal is 7,000 words, which was exceeded for this paper to provide contextual information.

Word count for systematic review:

Abstract

Objective: This paper reviewed studies that provide information on the informal and formal types of assistance sought by African descended UK groups from mental health difficulties.

Methods: A mixed methods approach was utilised to identify and synthesise qualitative and quantitative findings from specified electronic data bases. Rickwood, Thomas and Bradford’s (2012) definition of help seeking was used to clarify the studies inclusion criteria. 4 quantitative, 4 qualitative and 2 mixed methods studies were reviewed, synthesised and quality assessed.

Results: Despite the fact that the majority of quantitative studies focused on similar mental health difficulties they did not demonstrate a consistent formal help seeking pattern for participants, whereas different conceptualisations of informal help-seeking made it difficult to draw clear inferences on preferences. Qualitative findings illustrated a hierarchy of help seeking where informal help seeking was the conclusion. Difficulties in relation to GP consultation and referral, along with a preference for a black therapist/culture specific services was highlighted in the qualitative literature.

Limitations: A small number of studies, the varying conceptualisations of formal and informal help seeking and lack of clarity on generation of ethnic group are all limitations.

Discussion: Findings suggest that African descended groups access support from multiple sources, sometimes simultaneously. Clinical implications of findings such as ethnic matching, GP detection rates and culture-specific services are addressed.

Introduction

The higher prevalence rates of psychosis in UK-based African-descended[1] groups and in particular in African-Caribbean groups is well documented (Qassem et al. 2015; Fearon et al. 2006), whereas rates of common mental health disorders (CMD) such as anxiety and depression have been shown to vary. One household survey indicated no significant differences in CMD prevalence rates in Black, White (all White ethnic groups), South Asian and ‘Other’ groups (McManus et al. 2009), whereas findings from a community survey with more specific ethnic categorisation indicated that the rate of CMDs in Black-Caribbean groups was higher than White British and Black-African groups (Hatch et al. 2011), indicating potential inter-group differences in depression rates for African-descended groups.

Factors which have been shown to have an impact on the development of mental health difficulties include migrant status (e.g. first generation, settled population, Pinto, Ashworth, and Jones 2008), level of acculturation, reasons for migration (Alegria et al. 2008), culturally-specific way of expressing distress (Odell et al. 1997) and the intersection between gender and experiences related to migration (Pannetier et al. 2017; White 2006). The literature also purports that potential reasons for the disparities between the prevalence of mental health difficulties in African-descended and white UK-based groups include discrimination and social exclusion related to racism (Karlsen and Nazroo 2002).

The process of acculturation and its impact on mental health is multi-dimensional (Schwartz et al. 2010). Higher rates of schizophrenia are reported in second than first generation Black Caribbean immigrants (Pinto, Ashworth, and Jones 2008) and an ‘immigrant paradox’ is suggested in the literature whereby migrants with more exposure to the receiving cultural context reported poorer mental and physical health outcomes (Alegría et al. 2008). It has also been suggested that acculturation has an impact on people’s likelihood to access mental health services, with previous US-based research showing that first generation Black Caribbean immigrants were less likely to access mental health services than Black Caribbeans born in the US (Jackson et al. 2007) and UK-based qualitative research with African-Caribbean women suggesting that the acceptability of talk therapy increased between first and second generation migrants (Sisley et al. 2011). The higher rate of mental health difficulties also being reported in second generation UK-based African-Caribbean immigrants (Pinto, Ashworth, and Jones 2008; Alegría et al. 2008) may therefore appear to be unexpected. However, openness to psychological therapy does not infer an offer or receipt of psychological therapy, with UK-based reports showing that Black people are less likely to receive psychological treatment than their white counterparts (Keating and Robertson 2004).

Findings which show that GPs have a lower likelihood of detecting mental health difficulties in African-descended groups than in White-British groups may point to one of the potential reasons for the disparity between this openness and rate of access, with researchers stating that detection shortcomings may reflect different mental illness beliefs, ways of expressing distress and approaches to help-seeking (Odell et al. 1997). However, the most recent research found that the mental health difficulties of Black-African groups were less likely to be detected than African-Caribbean and White-British groups (Maginn et al. 2004), with researchers finding that the strongest predictor of detection was the person’s willingness to talk about their mental health difficulties with their GP, a process which Black-African groups were found to be less likely to engage in.

This finding points to two important processes that takes place in relation to the cultural barriers people from African-descended groups can be faced with in relation to recognising and acknowledging mental health difficulties. Firstly, admitting to an experience of distress may be believed to be a sign of weakness and/or a threat to self-identity in instances where culturally-defined archetypal identities such as ‘strong black woman’ (Edge and Rogers 2005; Adkison-Bradley et al. 2009) and ‘hyper-masculine man’ (Myrie and Gannon 2013) are endorsed.

Secondly, a barrier to the acknowledgement of distress in UK-based African-descended faith communities is the binary conceptualisation of mental health difficulties in terms of ‘sanity’ versus ‘insanity’ rather than in relation to a medical model or continuum. In addition, an association was found between mental health difficulties conceptualised in this way, with moral failing perhaps further preventing the acknowledgement of distress (Mantovani, Pizzolati, and Gillard 2017).

Explanatory models can have a two-fold impact on the acknowledgement of mental health difficulties and choosing where it is one seeks help for these difficulties. Previous qualitative research with a UK based sample of African-descended service users and carers suggest that individuals who cite djin and possession by an entity as causal beliefs for mental health difficulties show a preference for traditional healers and a disregard for western medicine, whereas if difficulties were conceptualised in terms of paranoia, a preference for medication was cited (Rabiee and Smith 2014). However contrastingly research on illness attributions and ethnic variations in pathways to care in Black, White and Asian samples (Singh et al. 2015) and research which utilised a self-report checklist to investigate the explanatory models of mental distress in UK based White British, Bangladeshi and Black Caribbean groups (McCabe and Priebe 2004a) showed that explanatory models did not always correspond to a specific treatment preference.

There is recognition within the literature of the limitations of individual-level models of help-seeking behaviours, such as explanatory models, in terms of their failure to take into account the complexity of social networks and systems which influence health-seeking behaviours and within which help-seeking behaviours are embedded (see MacKian, 2003). Instead, such models view the individual as a rational decision-maker, who with the correct ‘health information’ will adjust their behaviour in accordance with the required help-seeking pathways to alleviate the distress (Edge 2004). The term ‘reflexive communities’ is used by McKian (2003, 8) to describe the former-mentioned social embeddedness of help-seeking, decision-making processes and the specific ways that groups think and behave in relation to decision-making that in turn reflects the social construction of their position within society. In terms of the aims of the current review it was thought that an investigation of the sources of support being chosen by African-descended groups may indicate the conclusion of this decision-making process.

Within the literature a lack of consensus exists in terms of what defines help-seeking and its process (as outlined in the review by Rickwood, Thomas, and Bradford 2012). Some definitions point toward individuals requesting support from other people, defining help seeking as ‘the first stage of the social support process; that is, to a person, the recipient, taking the initiative and communicating with others to request any kind of support, whether affective, valuative, or instrumental’ (Shirom and Shperling 1996, 564). Whereas others are more ambiguous in terms of how they constitute help-seeking sources conceptualising it as the active search for resources that are relevant for the resolution of the problem (Zartaloudi and Madianos 2010), the location of such resources, whether they be internal (e.g. coping mechanisms) or external to the individual, remain unclear. The current review draws on the definition laid out by Rickwood, Thomas, and Bradford (2012) which states, ‘in the mental health context, help-seeking is an adaptive coping process that is the attempt to obtain external assistance to deal with a mental health concern’ (4). Of particular note is the focus on ‘external assistance’ within this definition as accessing sources of support separate to oneself (rather than incorporating personal coping mechanisms such as ‘self-talk’ or ‘praying’ which do not require sourcing support externally) was an integral delineation in the inclusion criteria. The current review investigated what sources of support are being sought by UK-based African-descended groups for mental health difficulties and what their attitudes are towards accessing support for themselves.

Method

The current review was a mixed-methods review that incorporated both quantitative and qualitative peer-reviewed papers. Guidelines outlined by Harden and Thomas (2005) for combining diverse study types in a systematic review were followed. Quantitative and qualitative literature were synthesised separately initially and were then combined in a third synthesis. The low number of quantitative articles yielded prevented a meta-analysis. The rationale for carrying out a mixed-methods review rather than a methodologically singular review was to enable multiple perspectives and a combination of theory development and empirical development.

Search strategy

Web of Science, PsycInfo, Embase, Social Policy and Practice and CINAHL were searched for qualitative and quantitative literature from commencement to November 2017. The last search was carried out on the 18th November 2017 using the following terms:

  1. Africa* OR Black* OR Caribbean* OR West Indi* OR ethnic* OR minorit* OR BME* OR rac* OR mixed*

And

  1. Mental OR psychological OR psychiatr* OR psychopatholog* OR psychosoc*

And

  1. help-seek* OR helpseek* OR help seek* OR seek* help OR seek* treatment OR treatment seek* OR service use* OR service utilisat* OR service utilizat*

This search produced 17,902 citations which were transferred to the reference manager program Mendeley. Duplicates were eliminated leaving 13,298 citations. All citations and abstracts were screened by the lead author. Following this, 72 citations remained. These were reviewed at the full-text level and screened against the review’s inclusion criteria, which were discussed at length amongst the research team. The reference lists of these 72 papers were reviewed at the title and if necessary abstract level for relevant papers. This search added 9 papers to the full-text screening. From this it was determined that 10 papers reached the full review criteria. A percentage of the papers (10%, n = 1,320) were double screened by a psychology research student at the title and abstract level showing a high level of concordance between the two raters (k = .92). The pair of raters met to discuss papers for which there were eligibility discrepancies at the full-text level and consensus agreement for inclusion was reached. See figure 1 for PRISMA flow diagram.

 

Citations obtained through database search (n = 17,902)

Identification

Duplicates removed (n = 4,604)

Total citations screened at title and abstract level (n = 13,298)

Citations excluded at the title and abstracts (n = 13,226)

Screening

Additional citations identified from reviewing reference lists of citations screened at full-text level (n= 9)

 

 

 

 

 

 

Total citations screened at full-text level (n = 81)

Total citations rejected at the full text (n = 71)

Pathways to care rather than help-seeking preference (n=19)

Looked at experiences/opinions of services rather than help-seeking (n=11)

Help-seeking preferences not for self (n=11)

Study based outside UK (n=7)

Conference abstract (n=5)

Ethnic breakdown of sample not specified (n=5)

Help not sought for psychological difficulties (n=3)

Sample not African-descended (n=3)

Description of ‘ideal support’ (n=2)

Opinion piece (n=1)

Barriers to help-seeking rather than help-seeking preferences (n=1)

Review/Charity report/magazine article (n=3)

 

 

 

 

Eligibility

 

 

 

 

 

 

Included

Papers included in the review (n= 10)

Figure 1. PRISMA flow diagram of results.

Inclusion criteria

The review utilised Rickwood, Thomas, and Bradford’s (2012) definition of help-seeking to define the  help-seeking related inclusion criteria, it states ‘in the mental health context, help-seeking is an adaptive coping process that is the attempt to obtain external assistance to deal with a mental health concern’ (6). Please see all inclusion criteria below.

  1. The source of assistance sought needs to be clearly distinguishable as one/more of the following: professional health service providers with a specified role in delivery of mental health care (formal); service providers and professionals that do not have a specified role in delivery of mental health care (semi-formal); informal social supports (informal) self-help resources (self-help).
  2. The help-seeking ‘process’ can include the following: general orientation or attitude toward obtaining assistance; future behavioural intentions; or observable behaviour (either in the past or prospectively in the future, this can be self-reported).
  3. In terms of psychological difficulty or mental health concern the review included all types of psychological disorders/difficulties, including stress and bereavement.
  4. Study design: both qualitative and quantitative studies
  5. Sample made up of African-descended adults residing in the United Kingdom
  6. Adults (18+) seeking help for themselves/on their own behalf for psychological difficulties. There must be a clear indication that the help is being sought by the person, e.g. it is not just the acceptance of a particular type of support offered as a record of attendance does not necessarily indicate that the individual actually sought out help from that service for themselves.
  7. English language
  8. Peer-reviewed

Criterion 1 includes external support sought for psychological difficulties. In terms of self-help resources these were classed as self-help resources that were external to the individual but used in isolation (e.g. online psychoeducational resources, self-help books, reading the bible) rather than a self-coping mechanism that the individual could utilise without coming into contact with something outside of their person (e.g. self-talk, praying). In terms of criterion 5 African-descended ethnic backgrounds incorporated included Black-African, African-Caribbean, Black-British and Mixed-African ethnicities. Criterion 6 includes participants responses that pertained to their own opinions/experiences of help-seeking for psychological difficulties, not participants views on where other people from their ethnic group access help/should access help for psychological difficulties.

Data extraction

The information that was extracted from the final review papers was the following: aims/objectives, geographical setting, participant number, gender, ethnic group, employment status, education, design, measure for help-seeking and psychological difficulties, type of analysis, type of help-seeking process, assistance and mental distress.

Quality Assessment

The quality of the studies was measured with use of the quality assessment tool for studies with diverse designs (QATSDD, Sirriyeh et al. 2011). The 16-item tool can be applied to both qualitative and quantitative research (see appendix ?). Such items pertained to issues such as the representativeness of the sample, validity and reliability measurements and strength of the theoretical framework. Domains were rated on a scale from 0 to 3, depending on the fulfilment of certain methodological criteria. Mixed methods studies were rated on all 16 items whereas quantitative and qualitative studies were rated on a maximum of 14 items as 2 items pertained to qualitative studies only and 2 items pertained to quantitative studies only. Total quality scores for studies are calculated as a proportion of the maximum score for that study design. They are presented as rating the papers quality from 0 (low quality) to 100 (high quality). The lead author and psychology research student rated the 10 papers separately which showed excellent inter-rater reliability, intraclass correlation coefficient estimate = .8. Following discussion of conflicting scores agreement was reached across all items, these are the results presented on appendix X.

 

 

 

 

 

 

 

 

Results

The review search yielded 4 quantitative, 2 mixed-methods and 4 qualitative studies all of which utilised a cross-sectional design, see table 1 for further study characteristics. In line with Harden and Thomas’ (2005) guidelines the approach to the synthesis will be the following. First the results from the 4 quantitative and 2 mixed-methods studies synthesis will be presented. This is because the qualitative components of the mixed-methods studies utilised structured tools for the gathering and analysis of open-ended interview data which was then quantified to make it suitable for statistical analysis. Where appropriate these are incorporated into the qualitative synthesis which is reported subsequently.

Quantitative findings

The quality of the 4 quantitative and 2 mixed-methods studies ranged from 48% to 76% indicating that they of moderate to high quality. Of the 6 studies, 2 reported results for formal help-seeking only whereas 4 reported results on participants’ formal, semi-formal and informal help-seeking (definitions of types of help-seeking were those conceptualised by Rickwood, Thomas and Bradford 2012 and are outlined in the methods section). 2 of the 4 studies conceptualised informal help-seeking in a different way to the current definition, it is stated where this is the case.

  Table 1. Study Characteristics
Author (Year) Research setting N/diagnosis Aims Design Distress measure/Help-seeking measure
Brown, J.S.L., Evans-Lacko, S., Aschan, L., Henderson, M.J., Hatch, S.L., and Hotopf, M. (2014) South-East London/Recruited from households Total, n=1610. Black Caribbean, n=137. Black African, n=225/ 386 ‘cases’ To investigate factors associated with informal help-seeking for mental health problems and contrast these with factors associated with formal help-seeking. The factors were socio-demographic, economic and clinical indicators. Type of informal help people used was also explored. Quantitative cross-sectional study using face to face computer assisted survey interviews The Revised Clinical Interview Schedule[2]/Two questions on formal and informal help-seeking
Febles, A and Ogden, J. (2005) Inner-city London/recruited from GP Practices. Total, n=480. Black Caribbean, n=163. Black African, n=48/no information on diagnosis To explore patients’ beliefs about stress, their association with help-seeking behaviour, and to examine differences by ethnic group. Quantitative cross-sectional study using questionnaires administered in GP practice A unique questionnaire was designed to assess patients’ beliefs about stress, i.e. which stress symptoms were indicative of stress on 3-point scale, and the associated help-seeking behaviour.
Brown, J.S.L., Casey, S.J., Bishop, A.J., Prytys, M., Whittinger, N., and Weinman, J. (2010) South London. Total, n=145. Black Caribbean, n=73. Black African, n=72/No formal diagnosis self-reported or provided. Inclusion criteria was Black-African and WB women who had previously experienced depression. To assess differences in the perceptions of depression of black African and

white British women and to explore whether there are differences in ethnic groups with regard to reasons for not seeking formal help.

Quantitative cross-sectional study using surveys. Information about previous depressive experiences was sought using the question: ‘Have you ever in your life been markedly depressed, that is for several weeks or more, you felt sad, lost interest in things and felt lacking in energy?’. The General Health Questionnaire (GHQ-12, Goldberg, 1972) was used to assess current levels of distress/ In relation to the vignette participants were asked ‘would you seek help/advice from a GP for these difficulties?’ and ‘Why would you NOT seek help/advice from a GP for these difficulties?’
Brown, J.S.L., Boardman, J., Elliott, S.A., Howay, E., and Morrison, J. (2005) South London. Total, n=196. Black, n=45 in the self-confidence group. Black, n=5 in the stress group (Black in this instance was made up of Black-African, Black-Caribbean and Black-other)/ CIS-R, BDI and STAIT results for Black group not provided To investigate the psychiatric status, demographics and prior help-seeking behaviour of those who self-referred to self-confidence and stress workshops. Quantitative cross-sectional study using pre-workshop psychiatric interview and self-report questionnaires Clinical Interview Schedule-Revised (Lewis 1994). Beck Depression Inventory (Beck et al. 1961): State-Trait Anxiety Inventory (Spielberger 1983). Ethnicity-specific results not reported for all these measures/ Info. about past contact with services, including the GP was collected from participants.
Shaw, C.M., Creed, F., Tomenson, B., Riste, L., Cruikchank, J.K. (1999) Central Manchester 1st phase – 612 – total

337 – African Caribbean, 275 – White Europeans.

2nd phase – 29 White Europeans, 29 African Caribbean’s/ People were included in phase 2 if their GHQ score is higher than 3 (which indicates psychiatric morbidity), also 1 in 4 people with a score of 2 or below were included (these were randomly selected)

To determine the prevalence of common mental disorders (anxiety and depression) and help-seeking behaviour in African-Caribbean’s and White Europeans. Mixed-methods cross-sectional two-phase study using surveys 1st phase: GHQ was used to assess psychiatric morbidity,

2nd phase: The Schedules for clinical assessment in neuropsychiatry/The short explanatory model questionnaire/ Short explanatory model inventory (SEMI, Lloyd et al. 1998)

Rüdell, K., Bhui, K., and Priebe, S.(2008) East London. Total, n=365/117 participants met criteria for a common mental disorder: Black Caribbean, n=21, White British, n=39, Bangladeshi, n=57. To examine the pattern of help-seeking strategies in response to experiences of mental distress, to explore people’s views on the helpfulness of medical services and to determine whether use of alternative services correlates with less use of medical services. Mixed-methods cross-sectional design using structured interviews Clinical Interview Schedule-Revised (Lewis 1994)/ Barts Explanatory Model Inventory (BEMI; Rudell, 2006).
Sisley, E.L., Hutton, J.M., and Goodbody, C.L. (2011) Central London 7 African Caribbean Women/no diagnosis specifically mentioned, participants had self-referred to community self- help workshops on self-confidence, sleep, anger or stress To explore African Caribbean women’s conceptualisations and experiences of distress and help-seeking, including access to mental health services. Qualitative cross-sectional design using semi-structured interviews none
Edge, D. (2008) Northwest of England. 12 Black Caribbean women/ combination of women who were (i) only depressed during pregnancy (n=2), (ii) only depressed after pregnancy (n=3), (iii) depressed during and after pregnancy (n=2); and

(iv) never depressed (n=5)

– To explore Black Caribbean women’s beliefs about perinatal depression and the relationship between these beliefs and help-seeking.

– To explore the impact of BC women’s experiences of engaging with healthcare professionals on their help-seeking practices.

Qualitative cross-sectional design using in-depth interviews Edinburgh Postnatal Depression Scale (EPDS, Cox 1987). Questions were also asked about psychosocial risks for depression, partner and social support, previous history of mental illness/ none
Edge, D., and MacKian, SC. (2010) Northwest of England. Same as above study The study aim was to examine prevalence and psychosocial risks for perinatal depression among this ethnic group. The study also sought to explore women’s models of help-seeking. Same as study above Same as study above
Edge, D., Baker, D., and

Rogers, A. (2004)

Northwest of England. Same as above study To examine and compare the prevalence of perinatal depression among Black Caribbean and White British women and to examine Black Caribbean women’s beliefs about perinatal depression and their attitudes to

help-seeking.

Same as study above Same as study above

Formal help seeking

The 2 studies which reported on formal help-seeking (help sought from professional health service providers with a specified role in delivery of mental health care) only were undertaken in London and scored quality scores of 52% (moderate quality) and 67% (high quality) respectively (Febles and Ogden 2005; Brown et al. 2005). The first study aimed to explore the association between participants’ beliefs about stress symptoms and their self-reported likelihood of seeing a doctor. 4 distinct groups of stress symptoms were specified, namely negative mood symptoms, specific somatic symptoms, non-specific somatic symptoms and social symptoms. For Black African and Black Caribbean participants, no significant correlation was found between the social symptoms group and the reported likelihood to see a doctor for Black Caribbean participants (examples of symptoms include the inability to have fun, feeling lonely and feeling that nobody cares, r=0.25, p=0.005). These results differed to the White-British group, as the more they perceived a symptom to be associated with stress the more likely they were to seek help in all symptom groups. In terms of previous behaviour, more White-British participants self-reported that they ‘sometimes’ or ‘always’ visited the GP for stress over the last year (42.8%) than Black-Caribbean (31.3%) or Black-African (29.2%) groups, however these differences did not reach significance on a chi-square test. No significant differences were found for self-reported GP visits for stress over the last year. A limitation of the Febles and Ogden (2005) study was that the sample was recruited from one GP practice in inner-city London, which limited generalisability of the results. The second limitation is that it was unclear how many, if any, of the 10 patients who had a role in choosing stress symptoms for the scale were of an African descended background, bringing the cultural suitability of the scale into question. In addition, no information was given on the validity of the questionnaire or measurement of other psychometric properties of the scale (e.g. factor analysis).

Two types of help-seeking processes were reported on in the second study (Brown et al. 2005), self-reported prospective behaviour and actual observable behaviour. Firstly, actual observable behaviour is reported in terms of the number of African-descended participants who self-referred to stress workshops (StW) and self-confidence workshops (SCW). The number of Black people who self-referred to the SCW (n=45, 28.3% of whole SCW sample) far outweighed the number of participants who self-referred to the StW (n=5, 9.4% of whole StW sample). By means of comparison, 88 White participants self-referred to the SCW (55.3%) and 44 (83%) to the StW. It terms of the whole study sample, it is reported that more people with social anxiety and depression referred to the SCW whereas those with anxiety and agoraphobia were more likely to self-refer to the StW (χ2=14.27, df=8, p=0.075), however although we are told that over 70% of the sample met criteria for psychiatric diagnoses, no ethnic breakdown is given in relation to participants diagnoses and it is therefore unclear whether this relationship is maintained for the African-descended participants. The percentage of African-descended people who self-referred to the groups (23.5% of total group number) was reported to be close to the population percentage of African-descended people in the area (25.9%). Findings on self-reported prospective behaviour was generated when participants were asked ‘have you ever seen your GP about anxiety/depression?’ with researchers finding ethnicity to be the only significant distinguishing factor, 79% (N=104) of white participants and 56% (N=28) of Black participants, reported that they had previously consulted their GP (χ2=33.38, p=0.001).

This finding is consistent with GP help-seeking results from the Febles and Ogden (2005) study which showed that African-descended people were less likely to report they would request help from their GP for symptoms they conceptualised as stress-related and were less likely to have visited their GP for stress-related difficulties than White-British groups (although the latter difference was not significant). Given the that the rate of African-descended people who self-referred to the workshops was similar to the percentage of in the population these findings may suggest that African-descended people are more likely to access help from community workshops than to access help from their GP. A limitation of the Brown et al. (2005) study was that the ethnic breakdown of the African descended group was not given.

The 4-other quantitative/mixed-methods studies also took place in urban settings. 3 were based in London (Brown et al. 2014; Brown et al. 2010; Rüdell et al. 2008) and 1 was based in Central Manchester (Shaw et al. 1999). Quality assessment scores for the studies ranged from moderate to high quality, they were 64%, 76%, 56% and 48% respectively. Study participants were recruited from diverse settings, e.g. directly from randomly selected households in London (Brown et al. 2014); from public libraries in South London (Brown et al. 2010); from GP practices in central Manchester (Shaw et al. 1999) and GPs and community organisations in East and South London (Rüdell et al. 2008). In terms of mental health concern, all of the studies focused on help-seeking for common mental health disorders such as anxiety/depression. For 2 studies meeting the criteria for a common mental disorder, as measured either by the GHQ and Schedules for Clinical Assessment in Neuropsychiatry (Shaw et al. 1999) or the CIS-R (Rüdell et al. 2008), were prerequisites for inclusion. For the 2 other studies (Brown et al. 2010; Brown et al. 2014), reaching specified clinical criteria were not prerequisites for participants’ inclusion in the part of the study that involved reporting on help-seeking, although self-reported experience of depression was a screening question for the former study. The help-seeking process explored in all studies was self-reported behaviour and in addition future behavioural intentions for one of the studies.

In terms of the former mentioned process the study by Brown et al. (2010) found that a significantly lower number of Black African women (30/73, 41.7%) than White British women (43/72, 59.7%) reported previously seeking help from their GP for their self-reported depression, χ2 = 4.7, df = 1, p<.05. This was despite the fact that Black African women reported significantly higher levels of distress than White-British women on the GHQ. Future willingness to seek help from the GP was assessed by asking, in relation to a depression vignette, if participants would seek help from a GP for these difficulties. Although we are not provided with ethnic specific results in response to this question, we are informed that no ethnic differences were found (U = 2226.0, p = 0.109). However, a significant association of 0.384 (p < 0.001) was found between willingness to seek help from a GP and actual previous GP consultation suggesting that actual behaviour may be a good indicator of future intentions. Recruiting from a library for the Brown et al. (2010) study allowed for the inclusion of participants who may not have typically accessed professional help and therefore could be seen as a strength of this study However, this recruitment approach  resulted  in less diversity in the level of education of the sample as the vast majority of both the African-descended and white participants were highly educated.

In contrast to the studies by Brown et al. (2005) and Brown et al. (2010), studies by Rüdell, Bhui and Priebe, (2008) and Brown et al. (2014) found that the rate of formal help-seeking was marginally higher or roughly the same for Black Caribbean and White British participants. However, we are not contrasting like with like with these two pairs of studies. Namely, the Brown (2005) sample incorporated Black-African, Black-Caribbean and Black-other ethnic groups as one ‘Black’ group and was mostly female, the Brown (2010) sample was all female and Black-African, the Rüdell, Bhui and Priebe (2008) sample was Black-Caribbean and mostly female and the Brown et al. (2014) study looked at  Black-Caribbean and Black African groups separately. In addition, the Brown et al (2014) study is the only one of these four which incorporated counsellors/therapists into definition and question about formal help-seeking, all others focused on GP help-seeking alone. For the Brown et al. (2014) study no significant differences were found between the White, Black Caribbean, Black African, Asian and ‘other’ groups on self-reported formal help-seeking over the past 12 months. However, when the ‘informal help-seeking only’ and the ‘informal and formal help-seeking’ categories were combined greater differences were found between the Black African (15%) and Black Caribbean (19.1%) groups than the white group (19.6%), greater differences being found between the African-descended groups than between the white group and either of the African-descended groups.  A weakness of the study was that the mental health concern mentioned in the ‘informal help-seeking’ and ‘formal help-seeking’ questions were different. Namely with regard to formal help-seeking participants were asked “in the past 12 months have you spoken to a GP, family doctor, psychological therapist/counsellor or other sources of help on your own behalf, either in person or by telephone about being anxious or depressed or a mental, nervous or emotional problem?” whereas in terms of informal support people were asked “in the past 12 months have you gone and seen any of the following for an emotional problem?” with options including friends, family members or spiritual/religious leaders. The different wording of these questions potentially had an impact on the results generated. One of the limitations of the study in relation to the current review was that not all of the findings were divided by ethnic group, limiting the amount of inferences that could be made.

For the Rudell et al. (2008) study a higher proportion of Black Caribbean’s (N=10, 50%) reported talking to their GP in relation to their mental health problem, in comparison with White-British (N=13, 36.1%) but not Bangladeshi (N=30, 52.62%) participants. There were no significant differences between these groups. Of these participants, it was found that a slightly higher proportion of Black-Caribbean’s (8/10, 80%) in comparison to White-British (6/13, 46.2%) and Bangladeshi participants (N=15, 50%) reported finding this helpful. However, given the small sample size of this study these comparisons are viewed tentatively. A strength of the Rudell et al. (2008) study was the use of a mixed methods sampling approach (reactive and proactive strategies), which led to the recruitment of a diverse range of participants.

The Shaw et al. (1999) study found that a high proportion of African Caribbean (22/29) and White European (21/29) participants, who researchers found to be diagnosable with a mental health problem (e.g. depression/anxiety), reported seeing their GP in the past 6 months. However, only a small proportion of these participants presented with mental health difficulties as the problem for which they were seeking help (2/29 African Caribbean, 3/29 White European), the majority presented with physical health difficulties as their primary concern. A limitation of this study was the small sample size and the lack of adequate information reported from the Short Explanatory Model Interview (Lloyd et al., 1997).

To conclude on the quantitative formal help-seeking findings there did not appear to be a consistent pattern in the rates of previous self-reported help-seeking from a GP or counsellor. This might seem surprising given that results for 5 out of the 6 studies were related to help-seeking for the same psychological difficulties (e.g. anxiety and/or depression). However, there were considerable differences in terms of the timeframes of the questions posed in relation GP help-seeking. In some studies participants were asked if they had ever sought help (Brown et al. 2005), in others they were asked about the last year (Febles and Ogden 2005; Brown et al. 2014) whereas in one other they were asked about the last 6 months (Shaw et al. 1999). Two studies did not indicate a timeframe at all (Rüdell, Bhui, and Priebe 2008; Brown et al. 2010). Results did not correlate with timeframe as one might expect (e.g. higher levels of help-seeking reported for longer timeframes posed). Other differences between studies which may have had a confounding effect on results were differing recruitment strategies and inclusion criteria.

Semi-formal and informal help-seeking.

In terms of semi-formal and formal sources of support the Brown et al. (2010) study grouped alternative therapies (classed as semi-formal support in current study) and social support (classed as informal support in current study) together with self-coping and religious beliefs (neither of which are classified as help-seeking using the current definition). They found that in comparison to White British women (19/72) that significantly fewer Black-African women (6/73) proposed seeking help from these alternative sources generally and were more likely to seek help from their GP’s. However, differentiations were not made in terms of what proportions of which group identified these different types of alternative supports as ones they utilised (e.g. no results reported on proportion that used religious beliefs specifically for example). What was meant by ‘self-coping’ and ‘religious beliefs’ was also unclear in the study.

The Brown et al. (2014) study which defined ‘informal help-seeking’ as help sought from spiritual/religious leaders, friends and family members found no significant difference between the proportion of White British, Black Caribbean and Bangladeshi participants who reported seeking help from the totality of the informal sources alone and who utilised a combination of these sources with formal support. However, similar to previously reported results when the ‘formal help-seeking’ and ‘informal and formal help-seeking’ categories were combined a greater difference was found to exist between the Black African (29.5%) and Black Caribbean (35.2%) groups than the White group (36.7%). The ethnic-specific break-down of participants use of different help-seeking sources that made up the ‘informal help-seeking’ category for this study was  not given in full, however some of this ethnic-specific information was randomly provided, e.g. we are told that Black Caribbean’s tended to seek help from friends (77.9%) more than other groups and were less likely to seek support from family members and that religious leaders were more likely to be used by Black-Africans (17.8%), than Black-Caribbean’s and White British.

The highest proportion of participants in all ethnic samples indicated that they had chosen ‘no help’ for mental health difficulties or emotional problems in the past 12 months. It is worth noting that unlike some of the other studies, reaching criteria for psychiatric diagnosis was not a necessary inclusion criterion for the study. It may have therefore been the case that the majority of the study sample did not have significant mental health difficulties, which may explain why a proportion of this group indicated they had not sought help over the last year.

Although it utilised a smaller sample than the Brown et al (2014) study the Rudell et al. (2008) study presented a similar pattern in terms of social support help-seeking for Black-Caribbean participants, namely it showed that 9 (45%) BC’s talked to family (in comparison to 23, 63.9%, WB’s and 39, 68.4%, Bangladeshis) and 12 (60%) BC’s talked to friends (in comparison with 27, 75%, WB’s and 32, 56.1%, Bangladeshis) by means of seeking help for mental health difficulties.

The Shaw et al. (1999) study showed that 12 African-Caribbean’s sought non-medical help in comparison to 5 White-British participants , 7 African-Caribbean’s stated that they went to see the herbalist (self-treatment with herbal remedies from the Caribbean) and 4 stated they went to the church, it is unclear where the last individual sought help.  It is not made clear in the paper whether they were seeking help here for MH difficulties or other types of difficulties.

In conclusion, it was difficult to draw specific inferences on the different forms of informal help-seeking due to the different conceptualisations and categorisations of sources of support. Two studies suggested a preference for seeking help from friends rather than family (Rudell et al. 2008; Brown et al. 2014). Results on semi-formal help-seeking such as from the church and alternative therapists (e.g. herbalists) was reported on in a way that was varied and unclear. However, it appeared to be a less popular source of support than friends and family members.

Qualitative findings

There were 4 qualitative studies that fulfilled the inclusion criteria for the review (see inclusion criteria section in methods). Relevant qualitative quotes from the 2 mixed studies (Shaw et al. 1999; Rudell et al. 2008) are also reported to in this section. Of these studies 3 utilised data from the same sample and set of interviews (Edge, Baker and Rogers 2004; Edge 2008; Edge and MacKian 2010). The quality of these 3 studies were 68%, 62% and 64% respectively, indicating that they were of moderate to high quality. This sample was made up of Black-Caribbean women (n=12), with or without perinatal depression, recruited at a large teaching hospital or community clinic in the northwest of England. The 3 studies were included in the review as all reported diverse findings relevant to the review. The remaining study sample was also a Black-Caribbean female-only sample (n=7). With a score of 69% it was a high-quality study (Sisley at al., 2011). Four themes were identified which related to African-Caribbean women accessing help for mental health difficulties. These were: formal support (accessing help from professional services), formal support (counselling and psychological therapy), semi-formal support (Black-led churches) and informal support (family and friends).

Formal support (accessing help from the GP)

Three of the studies reported findings related to accessing help from formal services. Two studies reported on the disparity between the brevity of the depression symptoms they reported to their GPs and the subsequent response of their GPs. For example, in the Edge, Baker and Rogers (2004) study GPs were reported to endorse social explanations for depression that led women to believe their depression was perhaps not responsive to treatment, one respondent indicated:

‘[H]e [the GP] actually sat me down and said… “Your husband’s from abroad, he can’t work, but you seem to think you can do everything – you’ve just had a baby … you’re older… the fact is you can’t do everything … You will get ill. It will wear you out. It’s simple …’ (434).

In the Sisley et al. (2011) study women were reported feeling that they had to ask the GP for help numerous times or go through a crisis (e.g. overdose) before input from formal services was achieved. Some of the few Rudell, Bhui and Priebe (2008) qualitative quotes provided also suggested that GP’s unresponsiveness was unhelpful:

‘[it’s] not helpful to talk to doctor, because he gives the same answer “it takes time”’ (7).

Searching for the right support or service was described by Sisley et al (2011) as a task unsupported by health professionals but which led to the discovery of previously hidden ethnic-specific services. In the Edge and MacKian (2010) study, seeking help from the GP was the third and final point of access outlined in a lay hierarchy of help-seeking, preceded by self-reliance and social network resources. As outlined by Edge, Baker and Rogers (2004) reluctance to access formal support was associated with participants’ fear that as Black people they would be given more severe mental health diagnoses by the GP (e.g. schizophrenia) due to their ethnicity:

‘I’m very much aware that black people are more likely to be labelled as having psychiatric problems … They’re not recognised with postnatal depression, but yet they recognise other [more serious] forms of psychiatric problems quite readily …Therefore I don’t want people labelling me … you know what I mean?’ (434)

A low number of participants from the suite of Edge studies (n=2) eventually sought help from mainstream services. It is stated in the Edge and MacKian (2010) study that only 7 of the 12 participants actually experienced depression (as defined using the Edinburgh Post-Natal Depression Scale, Cox et al. 1987] at some point before, during or after their pregnancy. Variable beliefs around what the GP was able and expected to deliver were also communicated (Sisley et al. 2011). For different participants this included a prescription of antidepressants, provision of an illness cert and someone to talk to. Whereas some of the few qualitative quotes reported in the Shaw et al (1999) study suggested a disbelief that GP’s could help with ‘this sort of problem’ (304) and that they were limited to offering tablets which were not desired, ‘doctors give you tablets and I don’t want tablets’ (304). The results of the Sisley et al. (2011) study also suggested that participants approached their GP with physical difficulties which, after counselling, were recognised as being rooted in psychological distress. A limitation of all of the qualitative studies is their limited gender representativeness in terms of the fact that the samples are made up of females only. All studies also had low sample sizes with no indication of whether or not saturation was reached during the analysis stage.

Formal support (counselling and psychological therapy)

The preference to receive counselling/therapy from a Black therapist for reasons such as increased understanding due to mutual cultural and historical experiences and therefore increased ability to empathise was raised in 2 studies. However, disbelief regarding the likelihood of these cultural requirements being satisfied was also aired, coupled with the belief that counselling would therefore be incapable of adequately meeting participants needs (both studies utilised the same sample, Edge 2008; Edge and MacKian 2010).

‘you need someone who’s on the same wavelength as you, who shares the same cultural experiences as you, which sometimes isn’t available. I wouldn’t wanna particularly unburden myself to some White woman, if I’m honest about it… It’s about having someone who you can chat to who understands where you’re coming from’ (Edge 2008, 385).

In another study, those who reported that they previously accessed psychological therapy (n=4, Sisley et al. 2011) reported finding it unhelpful for reasons such as being seen by an inexperienced therapist, feeling pre-judged, patronised and unsupported. Despite this, one participant shared that she was open to accessing help in the context of discussing therapy. One participant shared feeling that her therapist did not understand her, however the reason for this misunderstanding (e.g. potential cultural mismatch as highlighted in Edge, 2008; Edge and MacKian, 2010) was not made clear.

 

Informal support (family and friends)

Seeking help from family and friends was highlighted as the second step on the aforementioned lay hierarchy of help-seeking, after self-reliance and before formal services (Edge and MacKian 2010). Another study that this help came in the form of practical support from family (n=1) and speaking to friends/family who had also experienced low mood (n=4) resulting in feelings of understanding and acceptance (Sisley et al. 2011).

Quantitative and qualitative synthesis

Akin to the sample recruited for the Brown et al. (2005) study all participants from the Sisley et al. (2010) study had previously referred to community well-being self-confidence workshops (N=7) with 4 participants communicating that the title of the ‘self-confidence’ workshop as advertised on the leaflets appealed to them. Although we are not provided with a comparison group of those who chose not to attend the self-confidence workshop this finding, coupled with the higher popularity of the self-confidence workshop over the stress workshop from the quantitative study (Brown et al. 2005) suggests that the psychosocial rather than biomedical terminology used (‘self-confidence’) was appealing, perhaps on the basis of being less associated with stigma, making access more acceptable. The Sisley et al. (2011) findings which suggests that participants initially approached their GP with physical difficulties which later recognised as being psychological in nature perhaps brings some insight to the quantitative findings on the African-Caribbean sample from the Shaw et al. (1999) study, which showed that the majority of participants with diagnoses of anxiety and/or depression accessed help for physical rather than psychological difficulties. Quantitative results from the Brown et al. (2014) study which showed that both Black African and Black Caribbean groups utilise a higher rate of informal than formal support for psychological difficulties may compare with the Edge and MacKian (2010) lay hierarchy findings.

Discussion

This review took a comprehensive look at where African-descended UK-based samples seek support for mental health difficulties and what their attitudes are towards accessing this support (although findings on the latter topic proved limited at present). Due to the variability in both the content and presentation of findings, no consistent inferences regarding the ultimate preference of one form of support over another could be drawn from the quantitative literature. It was indicated that African-descended groups access support from multiple sources, sometimes simultaneously. The 4 qualitative studies focused on African-Caribbean female populations. They indicated that help was sought from multiple sources, including GPs, counsellors, friends and family.

Previous research carried out by Morgan et al. (2005) on patients with a first episode of psychosis indicated that levels of help-seeking from the GP was higher for White-British patients than it was for African-Caribbean and Black African patients. Although 4 of the review papers indicated a similar pattern, in terms of a higher level of GP consultation in White-British participants (Brown et al. 2005; Febles and Ogden 2005; Shaw et al. 1999; Brown et al. 2010), 1 study showed that there was only a marginal difference in consultation rates (Brown et al. 2014), whereas another found that the rate of self-reported consultation was higher for Black Caribbeans, bearing in mind that the latter study was based on a small sample (Rudell et al. 2008).

In all quantitative studies we are provided with data on participants self-reported rates of previous GP access for psychological difficulties. Although some studies do provide information on how participants rate the helpfulness of this support, we are not provided with information on how these concerns were acted upon by the GP. The qualitative literature suggests that when people decided to request help from the GP that similar to previous research on a White-British sample (Rogers and Pilgrim 1997), this was after exhausting self-coping strategies and practical and emotional support from friends and family. When sought out for help the current sample found the GP somewhat unresponsive and that it took a long time and at times a significant worsening of symptoms, until service-users were referred to appropriate help (Rudell et al. 2008; Sisley et al. 2011). This may mirror previous research which has found that the rates of referral to mental health services by GPs was higher for White-British patients than it was for African-Caribbean and Black African patients, even when variables related to GP referral such as male gender and living alone were controlled for. Further research which looks at the interactional process that takes place when GPs are confronted with mental health difficulties may be indicated. It would be interesting to look at what the signs are responded to before stepping up the case, whether they are common cross-culturally or whether training focusing on culturally specific ‘display rules’ needs to be considered for GPs. As outlined by Saint-Arnault and Oksoo (2008) ‘Display rules are the social expectations about the appropriate and expected mode through which distress should be expressed’ (7), comprehensive assessment tools which encapsulate such indicators and training on how to respectfully explore and manage them may be indicated.

Although one participant did indicate a higher level of openness to accessing psychological therapy than generations that were older than her, on the whole review studies did not make it clear whether participants were predominantly first or second-generation immigrants and therefore the impact of factors such as level of acculturation on accessing support from services and other sources was unclear.

Limited results were reported on people’s attitudes towards and experiences of accessing therapy. However, from the review papers that did report results a preference for a Black therapist was indicated (Edge, 2008; Edge and MacKian, 2010). These findings are echoed by research on UK-based African-Caribbean parents’ attitudes towards accessing support from child and adolescent mental health services (Fatimilehin and Coleman 1999), which suggests a preference for a Black psychologist for reasons such as understanding the impact of racism, the importance of Christian beliefs, language and communication. Although reports from participants who had previous experiences of psychological therapy were scarce (n=4) they aligned with previous research involving UK based Black Caribbean’s which showed a general dissatisfaction with services. The clinical implications of these findings point towards the importance of giving service-users a choice to access help from Black therapists who perhaps work from an Afrocentric rather than Eurocentric knowledge base.

A meta-analysis carried out by Smith and Cabral (2011) on the preferences and outcomes of racial/ethnic matching of client and therapist showed that although across ethnic groups in general outcomes did not substantially differ when clients did or did not see a therapist of the same ethnicity, an exception to these findings was found for African-American participants who showed mildly better outcomes when they were matched with African-American therapists. Potential reasons cited were strong racial/ethnic identification and wariness about mental health services provided by white therapists, which could be seen to mirror UK-based findings on the high levels of fear and mistrust of mental health services within African-descended groups (Frank Keating and Robertson 2004), perhaps highlighting an increased need for ethnic matching with therapists for this group. However, the process of this ‘matching’ is not straight forward, as outlined by Smith and Cabral (2011)

‘the reality is that clients and therapists of the same race/ethnicity may be very dissimilar. For instance, a female Korean American therapist raised in Houston may have very little in common with a young man who recently emigrated from Myanmar, although a researcher could technically consider this a dyad ―matched‖ on race’ (6).

In addition, , a potential dearth of black psychologists working in the UK means that ethnic matching, for the most part, may not be possible. Previous reports have shown that of the 54,855 British Psychological Society members only 181 have identified as black (Bullen 2016). Although membership does not equate to practitioner status it is potentially an indicator of the low number of African-descended practitioner psychologists available, therefore indicating that a more realistic recommendation in terms of implementation would be around increasing the cultural competence of mental health professionals in working with people from diverse ethnic backgrounds.

The need for assistance with sign-posting to culture-specific services was also implicated in the review (Sisley et al. 2011). However, although previous UK-based research has indicated a higher level of satisfaction with ethnic-specific services than statutory services in African-descended participants (Hutchison, Gilvarry, and Fahy 2000), the dependence on such services to provide total care to those experiencing mental health difficulties is somewhat unreasonable given the unreliability of income and therefore sustainability (Brindle 2015). Again, the need for training mainstream staff in culturally competent ways of assessing and assisting service-users from different ethnic groups being indicated.

Review studies which incorporated findings on informal help-seeking indicated that various forms of this support are commonly utilised by service-users for both practical and emotional assistance. However, as outlined by Brown et al. (2014) its utility is under-researched. Further research into what components of this form of support are helpful could be useful in understanding its utility and in making recommendations to the wider public regarding its provision.

Limitations and methodological considerations

Multiple methodological differences existed across the review studies, bringing comparability and generalisability into question. Firstly, different timeframes were posed in questions related to formal help seeking. Secondly, different groups had different criteria for inclusion in terms of psychiatric presentation, e.g. for some   a mental health diagnosis was required whereas for others results were reported for all people regardless of a diagnosis. In addition, the types of mental health concerns concentrated on in different studies varied, although most focused on anxiety and depression. The current review is further limited by the lack of provision of an ethnic breakdown of diagnostic results in some studies. This omission made the psychiatric make up and severity of difficulties of the African descended specific sample unclear. This may have also informed differences in rates of help-seeking across studies as results from an ethnically diverse sample suggests a significant relationship between severity of disorder and previous GP consultation (Brown et al. 2005). Thirdly, ethnic groups were categorised in different ways across different studies, bringing the comparability of findings into question. Although some studies differentiated between African-Caribbean and Black-African, further information about such groups was lacking, e.g. country of origin and whether they were first or second-generation immigrants. Limitations of categorisations such as ‘black’ are shown in studies that demonstrate closer similarity between African-Caribbean and White-British participants than between African-Caribbean and Black-African participants (Brown et al. 2014). Such findings simultaneously emphasise the inaccurate assumptions that can be made in relation to the similarities within ethnic groups and the inherent complexity and imprecision of race and ethnicity (Smith and Cabral 2011). Fourthly, the preponderance of females across almost all samples was evident, with some study samples being made up of females only, limits the generalisability of the findings. Fifthly, the fact that the majority of the review sample have depression and anxiety also limits the generalisability of the findings.

In terms of the approach to the systematic review that was taken, although some of the qualitative findings could be seen to support and inform, to a degree, quantitative findings, it is imperative to mention that 12 of the 19 participants who were part of the qualitative analysis focused on peri-natal depression. Although this is a clinical presentation not addressed in the quantitative literature, which for the most part reported on anxiety, depression and stress, its treatment and symptomology is more similar to CMDs than severe mental illnesses and it could therefore be seen as a strength of the review. Another limitation of all but one study was that the results were self-report rather than being a record of actual help-seeking, although previous research has found a relationship between the two one does not necessarily infer the other which brings into question the majority of the results presented.

Conclusion

This is the first review that systematically examined papers related to what sources of support African-descended UK groups are seeking for help with psychological difficulties. It suggests that similarly to White-British groups personal coping is prioritised initially followed by help from social support sources and then from more formal sources. Participants are also likely to seek out multiple sources of help simultaneously. Inferences were restricted by the variability in help-seeking conceptualisations and measurements. The findings point towards the need for training healthcare staff to deal with clients in a culturally competent way. However, further research and evidenced-based guidance on the content and format of this training is required.

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Rickwood, Debra, Kerry Thomas, and Sally Bradford. 2012. “Help-Seeking Measures in Mental Health: A Rapid Review.” https://www.saxinstitute.org.au/wp-content/uploads/02_Help-seeking-measures-in-mental-health.pdf.

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Rüdell, K, K Bhui, and S Priebe. 2008. “Do ‘Alternative’ Help-Seeking Strategies Affect Primary Care Service Use? A Survey of Help-Seeking for Mental Distress.” BMC Public Health 8 (1). Affiliation at time of research, Centre for Psychiatry, Barts & the London School of Medicine, Queen Mary University of London, UK. [email protected]: BioMed Central:207. http://search.ebscohost.com/login.aspx?direct=true&AuthType=ip,shib&db=jlh&AN=105685947&site=ehost-live.

Rüdell, Katja, Kamaldeep Bhui, and Stefan Priebe. 2008. “Do ‘Alternative’ Help-Seeking Strategies Affect Primary Care Service Use? A Survey of Help-Seeking for Mental Distress.” BMC Public Health 8 (1). BioMed Central:207. https://doi.org/10.1186/1471-2458-8-207.

S.P., Singh, Brown L., Winsper C., Gajwani R., Islam Z., Jasani R., Parsons H., et al. 2015. “Ethnicity and Pathways to Care during First Episode Psychosis: The Role of Cultural Illness Attributions.” Edited by Archie Anderson  Banerjee, Bechard-Evans, Bhui, Cole, Drake, Fisher, Gater, Ghali, Harrison, Hatfield, Helman, Islam, James, Lloyd, Mann, Marshall, McCabe, Morgan, Razali, Rogler, Singh, Singh, Singh, Singh, Zafar. BMC Psychiatry 15 (1). S.P. Singh, Mental Health and Well Being, Warwick Medical School, University of Warwick, Coventry CV4 7AL, United Kingdom. E-mail: [email protected]: BioMed Central Ltd. (E-mail: [email protected]):287. https://doi.org/http://dx.doi.org/10.1186/s12888-015-0665-9.

Secker, J, and C Harding. 2002. “Users’ Perceptions of an African and Caribbean Mental Health Resource Centre.” HEALTH & SOCIAL CARE IN THE COMMUNITY 10 (4):270–76. https://doi.org/10.1046/j.1365-2524.2002.00372.x.

Shaw, C M, F Creed, B Tomenson, L Riste, and J K Cruickshank. 1999. “Prevalence of Anxiety and Depressive Illness and Help Seeking Behaviour in African Caribbeans and White Europeans: Two Phase General Population Survey.” BMJ (Clinical Research Ed.) 318 (7179). BMJ Publishing Group:302–5. http://www.ncbi.nlm.nih.gov/pubmed/9924059.

Shirom, Arie, and Zipi Shperling. 1996. “Missile Stress, Help-Seeking Behavior, and Psychological Reaction to the Gulf War.” Journal of Applied Social Psychology 26 (7). Wiley/Blackwell (10.1111):563–76. https://doi.org/10.1111/j.1559-1816.1996.tb02731.x.

Singh, Swaran P, Luke Brown, Catherine Winsper, Ruchika Gajwani, Zoebia Islam, Rubina Jasani, Helen Parsons, et al. 2015. “Ethnicity and Pathways to Care during First Episode Psychosis: The Role of Cultural Illness Attributions.” BMC Psychiatry 15 (1). S.P. Singh, Mental Health and Well Being, Warwick Medical School, University of Warwick, Coventry CV4 7AL, United Kingdom. E-mail: [email protected]: BioMed Central Ltd. (E-mail: [email protected]):287. https://doi.org/http://dx.doi.org/10.1186/s12888-015-0665-9.

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Sisley, Emma J., Jane M. Hutton, C. Louise Goodbody, June S.L. L Brown, Sisley E.J., Hutton J.M., Louise Goodbody C., et al. 2011. “An Interpretative Phenomenological Analysis of African Caribbean Women’s Experiences and Management of Emotional Distress.” Edited by Adkison-Bradley Acheson  Barney, Beauboeuf-Lafontant, Berry, Bhui, Bhui, Bhui, Brocki, Brown, Brown, Cole, Edge, Edlund, Elliott, Fatimilehin, Jackson, Jones, Kleinman, Link, Lloyd, Loewenthal, Mclean, Morgan, Nazroo, Okello, Osborn, Paradies, Prior, Pugliesi, Schreiber,. Health and Social Care in the Community 19 (4). E.J. Sisley, Homeopathic Hospital, 41 Church Road, Tunbridge Wells, Kent, TN1 1JU, United Kingdom. E-mail: [email protected]: Blackwell Publishing Ltd (9600 Garsington Road, Oxford OX4 2XG, United Kingdom):392–402. https://doi.org/10.1111/j.1365-2524.2010.00986.x.

Sobo, E. J. 1996. “The Jamaican Body’s Role in Emotional Experience and Sense Perception: Feelings, Hearts, Minds, and Nerves.” Culture, Medicine and Psychiatry 20 (3). Kluwer Academic Publishers:313–42. https://doi.org/10.1007/BF00113823.

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Paper 2. Empirical paper: Mental illness beliefs and help-seeking in an African-descended sample

Word count: XXXX

Abstract

Background: Research has shown that African-descended groups have more negative pathways to care and are less likely to access care through a GP than White-British groups. Potential reasons for this disparity are complex. Varying mental illness beliefs may play a role as African-descended groups have been shown have some different mental illness beliefs to White-British groups.

Aim: To investigate the relationship between the mental illness beliefs and attitudes towards accessing help from services in an African-descended UK-based sample.

Method: Mental illness beliefs and openness to accessing help from services were investigated using the IPQ-S and the IASMHS. Relationships were examined using Pearson’s product moment correlation coefficient tests.

Results: Illness coherence was negatively correlated with indifference to stigma. Treatment and personal control were positively associated with the help-seeking propensity subscale. Consequences were found to be positively associated with indifference to stigma, however this association was not maintained when symptoms were controlled for. A more cyclical timeline was associated with a higher level of willingness to access and seek professional psychological help. Stress, drugs, bereavement and supernatural causes were the most highly cited mental illness causal beliefs.

Discussion: This study indicates that the relationship between mental illness beliefs and attitudes towards help-seeking is complex and multifaceted. Findings suggest that a clearer understanding of mental health difficulties may be associated with a higher awareness of stigma. Given the preponderance of research which reports the higher level of mental health stigma in ethnic minority groups the lower rating of perceived consequences in relation to mental health difficulties in the current sample when compared to a research on a White-British sample is interesting. Clinical implications are discussed. They include the need for person centred approaches, clear objective psycho-education and collaborative psychological formulations delivered by culturally competent clinicians.

Introduction

Psychosis refers to false beliefs and seeing or hearing things that others don’t (National Institute of Mental Health, 2018). Annual prevalence rates of all psychotic disorders are reported to be 4 in every 1000 of the general UK population (Kirkbride et al. 2012). Schizophrenia and other psychoses are associated with a heavy economic burden in terms of direct and indirect healthcare costs, unemployment and lost productivity due to illness (Chong et al. 2016). Longer duration of untreated psychosis is associated with poorer clinical outcomes and higher unemployment and therefore higher burden (National Collaborating Centre for Mental Health, 2014), illustrating the grave importance of treatment access.

Higher rates of psychosis in ethnic minority populations in general and in African-descended ethnic groups[3] in particular are reported as being almost universal in Western industrialised nations (Qassem et al. 2015). Although consistent with this assertion, different community and service level psychosis rates for this group have been reported in the UK. For example, the British National Mental Health Survey showed that African-descended groups (defined as Black-Caribbean, Black-African, Black-Other, and Mixed White/Black) were 2.72 times more likely to experience psychosis than the White majority (all countries of origin included in ‘White’ ethnic group). Whereas other research on people presenting to secondary mental health services with their first episode of psychosis indicated that the incidence rates for psychosis in African-Caribbean (AC) and Black-African (BA) groups were between 8 to 9.1 and 5.8 to 6.2 respectively (Qassem et al., 2015; Fearon et al., 2006).

Research has shown that people from African-descended groups have more negative pathways to care and a higher likelihood of receiving coercive treatment methods than White-British service-users. Specifically, they have been shown to be more likely to be admitted to hospital under the mental health act (Lloyd and Moodley 1992; Audini and Lelliott 2002; Morgan et al. 2005; Singh et al. 2015), be brought to hospital by police (Goater et al. 1999), be involved with criminal justice agencies (Morgan et al. 2005), receive depot anti-psychotic medication (K. Lloyd and Moodley 1992) and receive emergency injections (Goater et al. 1999). Concurrently, they have been shown to be less likely to access care through a general practitioner (Morgan et al. 2005) and to receive psychotherapy (Frank Keating and Robertson 2004). African-descended groups have been found to have poorer outcomes following diagnosis in the form of higher dropout rates and poorer changes in insight (Rathod et al. 2005) and have been found to have longer stays in low secure services (Mental Health Taskforce 2016).

The reasons for the differences in pathways, treatment and outcomes are multifaceted and complex. In addition to institutional racism within the National Health Service (Metzl in Lane 2010), it has been suggested that services may not be adequately meeting the culture-specific needs of African-descended people. This could include the sense of isolation experienced as a result of stigma and racism (Ric et al. 2007), which in turn leads to dissatisfaction with services, reluctance to seek help and re-admission to hospital at crisis points (Secker and Harding 2002).

High levels of fear and mistrust of mental health services in African-descended communities has been reported in focus group research, with service-users and carers communicating the belief that accessing services is a degrading, alienating and stigmatizing experience effected as a last resort. The inclusion criterion for the service user sample in the study was previous experience of using mental health services and so prevalence of psychosis and associated disorders were therefore unclear. Loss of control and a negative impact on quality of life may also limit engagement with services (Keating and Robertson, 2004).

Whilst wider UK-based research on African-descended groups is limited, qualitative interviews carried out with 17 African-Americans with diagnoses of depression indicated a belief that treatment from mental health services couldn’t be trusted, was of little use in managing mental health difficulties and that people should instead seek help through prayer (Campbell and Long 2014). Although this finding is based on an American sample, the similarities that exist between US and UK based African-descended groups in terms of the common sense of discrimination experienced in relation to racism (Qassem et al. 2015), allow certain comparisons to be drawn between the groups. Therefore, although it is unclear how beliefs related to the controllability of mental health difficulties might apply to psychosis and related disorders in this group, in terms of belief in treatment utility, from the current literature one may expect a higher belief in treatment control to be related to more positive attitudes towards accessing help from professional services.

Research using semi-structured interviews with African-descended faith-communities in the UK showed that perceived associations between mental health difficulties and moral failings/weaknesses were problematic in terms of help-seeking. This was because the former did not command the same empathic understanding and therefore level of response as physical difficulties (Mantovani, Pizzolati, and Edge 2017), indicating a negative relationship between certain causal illness beliefs and service access.

Focus group and interview research carried out with service-users diagnosed with schizophrenia, ethnic community lay members and mental health practitioners showed previous wrongdoing, supernatural causes and misunderstandings by the police to be important causal mental-illness beliefs in a UK-based African-Caribbean sample (Rathod, Kingdon, Phiri, Gobbi, et al. 2010b). Although this study indicated that seeking help from faith healers was a common help-seeking practice and that service-users feared, mistrusted and lacked confidence in professional services, the direct relationship between participants’ mental illness beliefs and attitudes towards accessing help from services was not indicated. Other research which suggested that African-Caribbean groups who conceptualize mental health difficulties as having supernatural causes accessed folk-healing based on religious and cultural beliefs (Schwartz, 1985), similarly this research did not make the related attitudes towards accessing professional help clear.

The current study aims to look directly at the relationship between mental-illness beliefs and attitudes towards accessing help from professional services using the Illness Perceptions Questionnaire for Schizophrenia (IPQ-S). It is a reliable and valid measure of cognitive representations of mental health problems held by people with a diagnosis of schizophrenia (Lobban, Barrowclough and Jones, 2005). However, the scale was developed in a predominantly White-British sample, and therefore does not incorporate all of the causal beliefs about mental illness that are relevant to an African-descended group. For example, supernatural powers (Nigerian sample, Ilechukwu, 1988; UK-based AC sample, Rathod, Kingdon, Phiri and Gobbi, 2010), previous wrongdoing, drugs, a series of misunderstandings (UK-based AC sample, Rathod, Kingdon, Phiri and Gobbi, 2010) and racism (two African-American samples, Ward, Clark, Heidrich, 2009; O’ Conner et al. 2010). The current study will therefore use a culturally-refined version of the scale which included these beliefs.

The literature suggests that culture-specific needs not being met, fear and mistrust of services, potential disbelief in the utility of professional treatment and certain mental illness beliefs may inform African-descended people’s attitudes towards and willingness to seek help from mental health services. However, to date, although UK-based studies have looked separately at mental illness beliefs (e.g. Rathod, Kingdon, Phiri, and Gobbi, 2010) and perceptions of services of African-descended service-users, professional and carer groups (e.g. Mclean, Campbell, and Cornish, 2003), none have looked directly at the relationship between these two concepts. The aim of the current study is to begin to address this knowledge gap by investigating this relationship in African-descended people who have a diagnosis of psychosis. Such research could be crucial in understanding the impact of wider culturally-specific mental illness beliefs on African-descended participants attitudes towards accessing services and/evidence-based care. The following hypotheses will be tested: Treatment control, illness coherence and personal control will be positively associated with attitudes towards accessing help from services. Consequences will be negatively associated with attitudes towards accessing help from mental health services. Some exploratory analyses will also be carried out to see how timeline cyclical, timeline, personal blame and emotional representation are associated with attitudes towards accessing help from services. Causal beliefs will also be investigated.

Materials and Methods

Participants

Participants met the following inclusion criteria: a self-reported diagnosis of psychosis (i.e. diagnosis on schizophrenia spectrum such as schizophrenia, schizo-affective disorder, delusional disorder) or experience of psychosis with diagnosis of bipolar disorder; self-identified as ‘African Caribbean’, ‘Mixed African Caribbean’, ‘Black British’, ‘Black-African’, or ‘Mixed Black-African’; aged 18 or above; had the ability to give informed consent and had sufficient English to complete the measures. Exclusion criteria were: being from a different ethnic group to those previously outlined in the inclusion criteria and a lack of capacity to understand questions. The latter criterion applied to face to face participants only as this was the only group with whom this could be assessed.

Measures

Mental-Illness Beliefs

Participants beliefs about psychosis were assessed using a refined version of the illness perception questionnaire for schizophrenia (IPQ-S, Lobban et al., 2005). The questionnaire has been shown to be a reliable and valid measure of mental illness perceptions in people diagnosed with schizophrenia (Lobban, Barrowclough, and Jones 2005). Its subscale dimensions are as follows: perceived identity (label/symptoms), consequences (physical, social or behavioural), causes, timeline acute/chronic, timeline cyclical, personal control, personal blame, treatment control, illness coherence and emotional representation.

Measure refinement. The Illness Perception Questionnaire for Schizophrenia (IPQ-S, Lobban et al., 2005) is a well-established measure of mental health beliefs in people with psychosis developed from the Illness Perception Questionnaire (IPQ). Adaptations of the IPQ can be used for a variety of health difficulties, it has a specific number of core items but allows the user to add items for particular patient groups or health concerns (Weinman et al. 1996). For that reason, a small number of items were added to the causal subscale subsequent to the following procedure. Transcript data from focus groups that were conducted for a study exploring the acceptability of the CaFI project were reviewed. These incorporated discussions between African-Caribbean service-users, carers, advocates and community members on experiences of psychosis. Other research relevant to the beliefs of a British-based African-descended sample was also reviewed (e.g. Rathod, Kingdon, Smith and Turkington, 2005). The following causal-belief items were identified as important in the literature and were thus added to the scale: previous wrong-doing; supernatural or spiritual causes (e.g.  Black magic, spirits, obeah, evil eye); being treated unfairly/targeted by the police; racism or racial discrimination; unfulfilled dreams or expectations; feeling like you don’t belong; wanting things you can’t have. Two family-carers for service-users with schizophrenia (one of African-Caribbean ethnicity, one of West-African ethnicity) and one mental health service-user with schizophrenia (African-Caribbean) were interviewed in relation to the accessibility of the refined scale. The consensus of this group confirmed the accessibility of the adapted measure.

Attitudes towards Mental Health Services

The Inventory of Attitudes Towards Seeking Mental Health Services(IASMHS, Mackenzie, Knox, Gekoski, and Macaulay, 2004) is a self-report questionnaire that measures attitudes towards seeking help from mental health services. Responses are measured with use of a 5-point scale. The subscales include psychological openness, help-seeking propensity and indifference to stigma. Higher total scores reflect more positive help-seeking attitudes. It has been found to have good validity and reliability (Mackenzie et al. 2004).

Symptoms of psychosis

The Community Assessment of Psychic Experiences(CAPE, Stefanis et al., 2002) is a self-report questionnaire that measures the severity of psychosis-like experiences. It is consisted of 42 items based on clinical symptoms of patients within three dimensions, which are positive symptoms (20 items), negative symptoms (14 items), and depression (8 items). When symptoms are reported, participants are asked to indicate how frequently they experience them (frequency scale) and how distressed they are by them (distress scale). A total score is generated by adding up the scores on the frequency questions.

Perceived discrimination measure.

As a suitable perceived discrimination questionnaire for use in British based African-descended samples could not be located a two-question perceived discrimination scale was developed.It is scored on a 5-point scale (strongly disagree to strongly agree) and is involved of the following two questions (1), NHS mental health services discriminate against people (treat people unfairly) because of their racial/ ethnic background and (2) NHS mental health services discriminate against me (treat me unfairly) because of my racial/ ethnic background. Please see paper three for details of the deliberation around including this measure.

 

Socio-demographics

Information was collected on age, gender, ethnic group, diagnosis, country of birth and where people heard about the research. See appendix X for full study questionnaire.

Recruitment

The current study utilised diverse recruitment strategies, including online (social media and forums) and community approaches (Waheed, Hughes-Morley, Woodham, Allen and Bower, 2015). Participants were given the option of completing the questionnaires online, over the phone, via post or face to face (e.g. when in the Greater Manchester area). The researcher also contacted 30 participants who had previously taken part in the culturally adapted family intervention project (CaFI) and affiliated student projects, which led to the recruitment of a proportion of the participants. Please see paper three for a more in-depth discussion around the recruitment process, recruitment uptake and a participant flow CONSORT diagram.

 

Procedure

Participants completed questionnaires face-to-face (n=32), over the phone (n=1), or electronically (n=1). See paper three for more details on the procedure. Research protocol and materials were reviewed and approved by the University Research Ethics Committee (UREC) at the University of Manchester, Ref: 2017-0726-3696.

 

Statistical Analysis

The Statistical Package for Social Sciences (SPSS) software package, version 23, was used to carry out data analyses. Preliminary analyses involving review of scatterplots, histograms, skewness and kurtosis established the suitability of the data-set for parametric testing. Cohen’s criteria were used to assess analyses effect sizes. Pearson’s product-moment correlations were used to investigate the relationship between sociodemographic variables and total and subscale CAPE, IASMHS and IPQ-S scores. Reliability was estimated by calculating total and subscale Cronbach’s alpha. Partial correlations were used to investigate the relationship between subscale IPQ-S scales and total and subscale IASMHS scales, controlling for CAPE frequency scores.

Results

Sociodemographic variables and descriptive statistics

Socio-demographic variables are reported in Table 1. No relationship was found between age or gender and any of the subscale and total scores of the CAPE (Stefanis et al. 2002), IPQ-S (Lobban, Barrowclough, and Jones 2005) or IASMHS (Mackenzie et al. 2004) and perceived discrimination measure except for a negative relationship between age and the IPQ-S treatment control subscale, r=-.34, n=34, p=.049. Lower age was associated a higher belief that treatment would be helpful in managing mental health problems. Age will thus be controlled for in cross-sectional analyses involving the treatment control subscale. Total and subscale descriptive statistics and Cronbach’s alpha scores are shown on Table 2.

Table 1: Participant sociodemographic information
Sociodemographic description Mean (SD), range
Age 46.18 (10.56), 30-62
Gender n (%)
     Male 20 (58.8%)
     Female 14 (41.2%)
Ethnicity  
     Black-Caribbean 10 (29.4%)
     Black-African 6 (17.6%)
     Black British 11 (32.4%)
     Black other 1 (2.9%)
     Black British African 1 (2.9%)
     Mixed African-Caribbean 3 (8.8%)
     Caribbean mixed 2 (5.9%)
Country born
     England 25 (73.5%)
     Africa 4 (11.8%)
     Caribbean 5 (14.7%)
Diagnosis (self-reported)
    Schizophrenia/schizoaffective disorder/paranoid schizophrenia 31
    Bipolar disorder (with psychosis) 3
“Best label” (self-reported)[4][5]
    Schizophrenia 9 (26.5%)
    Schizoaffective disorder 1 (2.9%)
    Paranoid schizophrenia 4 (11.8%)
    Bipolar/manic depression 4 (11.8%)
    Psychosis 3 (8.8%)
    Anxiety and depression 3 (8.8%)
    Personality disorder 1 (2.9%)
    Mental health problems 1 (2.9%)
    Voices and hallucinations 1 (2.9%)
    Demons/schizophrenia 1 (2.9%)
    Suicidal thoughts 1 (2.9%)[6]
Table 2: Measures descriptive statistics
Scale/Subscale α Mean (SD), range
Timeline acute/chronic n=32 0.82 14.06 (6.28), 0–24
Timeline cyclical, n=33 0.81 11.03 (3.96), 0–16
Consequences, n=32 0.76 25.03 (8.5), 9-44
Personal Control, n=32 0.47 10.88 (3.15), 4-16
Personal blame, n=34 0.63 7.14 (3.13), 0-12
Treatment control, n=33 0.69 13.18 (4.21), 6-20
Illness Coherence, n=33 0.82 5.91 (4.85), 0-20
Emotional representation, n=31 0.83 17.74 (8.25), 2-36
IASMHS total, n=31 0.72 62.97 (13.62),
Psychological openness, n=31 0.49 16.59 (6.48), 4-30
Help-seeking propensity, N = 34 0.85 25.47 (7.53), 2-32
Indifference to stigma, n=34 0.70 20.91 (7.3), 2-32
CAPE Frequency (total), n=30 0.92 31.26 (18.15), 0-70
CAPE Distress (total), (see below)[7] 23.66 (23.33), 0 – 89
Total discrimination 0.92 3.94 (2.95), 0 – 8

Exploratory analyses

What proportion of schizophrenia-related experiences did participants attribute to mental health problems, side effects of medication and/or other factors?

The proportion of schizophrenia-related symptoms (as outlined on the IPQ-S identity scale) that people attributed to the factors outlined in the questionnaire were as follows. Of the responses given 48.59% (33.98% of all possible responses) of participants attributed a combination of symptoms to mental health difficulties, 21.39% (14.96% of all possible responses) attributed symptoms to side effects of medication and 30.02% (21% of all possible responses) attributed symptoms to other factors[8].

What causal beliefs did participants have in relation to their mental health experiences?

Participants were asked to list the three most important things that they currently believed caused their mental health difficulties. Responses were coded by the primary researcher into the categories shown on Table 3.

What is the relationship between the IPQ-S timeline cyclical subscale and attitudes towards mental health services?

A medium positive relationship was found between IPQ-S timeline cyclical and the help-seeking propensity subscale, r=.35, n=32, p=.044, which was maintained when symptoms were controlled for, r=.38, n=29, p=.036. This indicates that a more cyclical mental illness timeline is related to a higher reported belief that individuals were willing and able to seek professional psychological help.  No relationship was found between timeline cyclical and the IASMHS total or subscales scores. See table 4 for all IPQ-S and IASMHS correlation results.

What is the relationship between IPQ-S timeline subscale and attitudes towards mental health services?

No relationship was found between timeline acute/chronic and any of the IASMHS total or subscale scores.

What is the relationship between personal blame and attitudes towards mental health services?

No relationship was found between personal blame and IASMHS total or subscale scores.

What is the relationship between emotional representation and attitudes towards mental health services?

A negative medium relationship was found between the emotional representation subscale and the indifference to stigma subscale, r=-.41, n=32, p=.016. However, this relationship was not maintained when symptoms were controlled for in the correlation, r=-.3, n=29, p=.106.

Table 3: Causal beliefs
Causal Factors Listed as important Most Important 2nd Most Important 3rd Most Important
  1. Stress/worry/thinking about things too much (factors include work related stress, relationship related stress)
9 5 (14.7%) 2 (5.9%) 2 (5.9%)
  1. Drugs
9 3 (8.8%) 3 (8.8%) 3 (8.8%)
  1. Bereavement
7 3 (8.8%) 3 (8.8) 1 (2.9%)
  1. Supernatural/spiritual cause
6 2 (5.9%) 2 (5.9%) 2 (5.9%)
  1. Trauma
5 3 (8.8%) 2 (5.9%) 0
  1. Family related factors
5 2 (5.9%) 2 (5.9%) 1 (2.9%)
  1. Racism/racial discrimination
4 1 (2.9%) 0 3 (8.8%)
  1. Unfulfilled expectations
4 2 (5.9%) 1 (2.9%) 1 (2.9%)
  1. Violence/aggression
3 1 (2.9%) 1 (2.9%) 1 (2.9%)
  1. Hereditary causes
2 1 (2.9%) 1 (2.9%) 0
  1. Chemical imbalance
2 2 (5.9%) 0 0
  1. Lack of sleep
2 2 (5.9%) 0 0
  1. Childhood factors
2 1 (2.9%) 1 (2.9%) 0
  1. Poor diet
2 0 1 (2.9%) 1 (2.9%)
  1. Targeted/unfairly treated by the police
2 0 2 (5.9%) 0
  1. Financial concerns
2 0 1 (2.9%) 1 (2.9%)
  1. Feeling like you don’t belong
2 2 (5.9%) 0 0
  1. Other[9]
14 2 (5.9%) 6 (17.6%) 6 (17.6%)

 

Hypotheses-driven analyses

Hypothesis One: Treatment control, illness coherence and personal control will be positively associated with attitudes towards accessing help from services.

A medium positive relationship (as defined by Cohen, 1988) was found between the treatment control IPQ-S subscale the IASMHS help-seeking propensity subscale (r=.49, n=28, p=.006), suggesting that the more participants believed their treatment would be helpful in managing their mental health problems the more likely they were to report being willing and able to seek professional psychological help.

Contrary to the hypothesis a negative medium relationship was found between illness coherence and total IASMHS, r=-.42, n=32, p=.013, which was maintained when controlling for symptoms using the CAPE distress and frequency scales, r=-.43, n=29, p=.017. A medium negative relationship was also found between the illness coherence and indifference to stigma subscale, r=-.46, n=32, p=.006, this too was maintained when controlling for symptoms, r=-.42, n=29, p=.019. The former relationship indicates that the more coherent one’s understanding is of their mental health difficulties the less positive their attitudes are towards seeking help from professional services. Whereas the latter relationship suggests that the clearer one’s understanding is of their mental health difficulties the more concerned they are about what various important others might think if they found out that the individual was seeking help for psychological difficulties.

In line with the study’s hypotheses, a medium positive relationship was found between the personal control subscale and the IASMHS help-seeking propensity subscale, r=.37, n=32, p=.033, which was maintained when symptoms were controlled for, r=.38, n=29, p=.037. This relationship suggests that the higher one perceives their personal control to be the more they report to be willing and able to seek professional psychological help.

Hypothesis two: Consequences will be negatively associated with attitudes towards accessing help from mental health services.

No significant relationship was found between the total IASMHS, the help-seeking propensity subscale, the psychological openness subscale and the IPQ-S consequences subscale. However, in line with the hypothesis a medium negative relationship was found between the IPQ-S consequences subscale and the indifference to stigma subscale, r=-.45, n=29, p=.008, indicating the higher the level of participants perceived social, physical or behavioural consequences the more concerned they were about what others might think if they found the individual were seeking professional help for psychological problems. Although not significant, the strength of this relationship was maintained when controlling for symptoms, r=-.34, n=29, p=.06.

Table 4: Pearson’s product-moment correlation and partial correlation analyses
IPQ-S Total IASMHS

r, (n)

Indifference to Stigma,

r, (n)

Help-seeking propensity

r, (n)

Psychological Openness

r, (n)

Treatment control .17, (28) -.12, (28) .48 (28)** -.06, (28)
Treatment control (controlled for CAPE distress and frequency scores) .21,(32) -.03, (32) .45(32)** -.05, (32)
Consequences -.21, (32) -.45, (32)** .14, (32) -.1, (32)
Consequences

(controlled for CAPE distress and frequency scores)

-.15 (29) -.342, (29) .105, (29) -.068, (29)
Illness coherence -.42, (32)* -.46, (32)** -.09, (32) -.27, (32)
Illness coherence

(controlled for CAPE distress and frequency scores)

-.43, (29)** -.42, (29)* -.15, (29) -.26, (29)
Timeline cyclical .06, (32) .26, (32) .35, (32)* .01, (32)
Timeline cyclical

(controlled for CAPE distress and frequency scores)

.17, (29) -.12, (29) .38, (29)* .06, (29)
Timeline acute/chronic .001, (32) -.19, (32) .12, (32) .09, (32)
Timeline acute/chronic

(controlled for CAPE distress and frequency scores)

.11, (29) -.07, (29) .14, (29) .14, (29)
Personal control .28, (32) .11, (32) .37, (32)* .04, (32)
Personal control

(controlled for CAPE distress and frequency scores)

.27, (29) .09, (29) .38, (29)* .03, (29)
Personal blame -.06, (32) -.09, (32) .12, (32) -.18, (32)
Personal blame

(controlled for CAPE distress and frequency scores)

-.04, (29) -.07, (29) .15, (29) -.17, (29)
Emotional representation -.16 (32) -.411 (32)* .11 (32) -.002 (32)
Emotional representation

(controlled for CAPE distress and frequency scores)

.06 (29) -.3 (29) .01 (29) .06 (29)
*=p<.05

**=p<.01

 

Discussion

This study investigated the relationship between mental illness perceptions and attitudes towards accessing help from professional mental health services in African-descended participants who had a diagnosis of schizophrenia or other psychoses. Mental illness perceptions were measured on 9 different subscales, these included causes, consequences, treatment control, illness coherence, timeline acute or chronic, timeline cyclical, personal control, personal blame and emotional representation. Attitudes towards accessing help from professional services were measured using three subscales, psychological openness, hope seeking propensity and indifference to stigma.  Findings suggest that the relationship between mental illness beliefs and different attitudes towards help seeking is complex and multifaceted.

The 5 most highly rated causal factors for mental health difficulties in the current study were stress, drugs, bereavement, supernatural or spiritual causes and trauma. Although not wholly dissimilar to causes cited in studies carried out with majority White-British groups, which found stress or worry, trauma, chemical imbalance and thinking about things too much to be the most highly rated causes (Lobban, Barrowclough, and Jones 2005; Williams and Steer 2011), the lower rating of ‘chemical imbalance’ in the current sample as a potential cause for mental health difficulties may be of note. This item, in addition to the ‘hereditary’ causal item could be identified as reflecting a ‘biological’ framework, neither of which were rated highly by the current participants. This may echo research which found that biological factors were not readily endorsed by UK-based African-descended participants (McCabe and Priebe 2004; Rathod et al. 2010), especially when compared to White-British (McCabe and Priebe 2004b). In terms of the culture-specific ‘supernatural’ and ‘previous wrongdoing’ causal beliefs, findings deviated somewhat from previous focus group research carried out by Rathod and colleagues (2010) with African Caribbean lay people and service users who had a psychosis-related diagnosis. This research found that supernatural causes and previous wrongdoing were the most highly rated causes of mental health difficulties followed by social factors. In the current study ‘previous wrongdoing’ was not listed by participants as one of the most important causal factors whereas social factors such as stress, bereavement and drugs were prioritised over supernatural and spiritual causes. The prioritisation of social factors over supernatural causes may suggest acculturation to western culture in the current sample, which is unsurprising given that the majority were born in the U.K. Findings could be seen to more closely echo research by McCabe and Priebe (2004) which endorsed social causal attributions more than supernatural factors.

Contrary to the study hypothesis, participants who felt they had a more coherent understanding of their mental health difficulties were shown to have less positive attitudes towards seeking professional help. They were also shown to be more concerned about what other people might think if they knew they were seeking help for their difficulties. These findings could be seen to deviate from previous research by Williams and Steer (2011) which found a positive relationship between IPQ-S illness coherence and self-reported engagement with services, another aspect of help-seeking in a sample of predominantly White-British people with diagnoses of schizophrenia. The aforementioned hypothesis presumed that a more coherent understanding of one’s difficulties denoted an alignment of illness perceptions with the dominant ‘western gaze’ of professional services (Lehti et al. 2010) and thus a preference and openness to accessing help from mental health services. However, the current finding perhaps indicate this is not necessarily the case, as a conceptualisation from a cultural or social framework could just as easily be ‘coherent’ but be involved of causal factors such as ‘pressure’ (Littlewood, 1993), overwork (Fisher, 1985) or the belief that difficulties reveal an individual’s character flaw or weakness (Sobo 1996), which wouldn’t necessarily result in individuals choosing to access professional services. The finding that a more coherent understanding of one’s difficulties is associated with more concern about the views of others, suggests that illness coherence does not relate to non-stigmatising views. It may be the case that participants with a more coherent understanding of their mental health difficulties also had a clearer understanding that their experiences were often associated with stigma and thus social consequences in both UK based African-descended groups (Shefer et al., 2013; Palmer, 2007) and the general UK population (Corrigan 2004).

Treatment and personal control subscales were not related to attitudes towards mental health difficulties, with the exception of an association with the help-seeking propensity subscale for both IPQ-S subscales. This indicated that (1) the more participants believed their treatment would be helpful in managing their mental health problems and (2) the higher they perceived their personal control to be, the more likely they were to report being willing and able to seek professional psychological help. In comparison to previous research carried out by Lobban, Barrowclough, and Jones (2005) using the IPQ-S in a predominantly White-British sample the current sample showed lower belief that treatment could be helpful in managing mental health problems (mean score 13.15 vs 17.65) and a lower degree of personal control (mean score 10.88 vs 13.92). This contrast may inform findings which have shown that people from BME communities are less likely to use psychological therapies (Mental Health Providers Forum and Race Equality Foundation, 2015). However, this difference could also be seen to be due to other factors, given the variance in the sample sizes of these different samples coupled with the fact that participants for Lobban et al.’s (2005) study were recruited directly from services (e.g. service attenders) and were all current mental health service users. In terms of personal control, results echo other findings by Keating and Robertson (2004) which showed that loss of control in relation to mental health difficulties was a potential barrier to accessing help from services. A limitation of the current study was that help-seeking and treatment were specifically conceptualised as that which was sought from ‘mental health services’ alone rather than incorporating help-seeking from sources such as social support and organisations that didn’t have a specific role in mental healthcare (e.g. churches). Previous research has shown that participants who viewed their difficulties in spiritual rather than ‘mental’ terms looked to avenues such as religion and traditional-healers for support (Leavey et al., 2017; Campbell and Long 2014). Research on accessing support from traditional healers for spirit possession has shown that patients have reported full/partial recovery when their explanatory models align with the treatment being delivered by healers (van Duijl et al. 2014), showing the impact of belief in treatment utility on outcome and help-seeking. The current study’s conceptualisation of help-sought may therefore be overly exclusive.

Although the significance of the positive relationship between the consequences and indifference to stigma subscales was not maintained when symptoms were controlled for, given that the majority of items on the former subscale measures some form of social consequence the positive association is unsurprising. The former finding may echo previous research carried out with African-descended groups which indicated that experiences of rejection from one’s community is a social consequence of being diagnosed with mental health difficulties (Cinnirella and Loewenthal, 1999; Myrie, C.V., and Gannon, 2013; Mantovani, Pizzolati, and Edge, 2017). No relationship was reported between consequences and other attitude-dimensions, which is perhaps surprising given that a perception of worse consequences have been shown to be associated with lower levels of engagement in previous research (Williams and Steer 2011). When compared to the aforementioned research by Lobban et al. (2005) the current African-descended sample generated considerably lower mean scores on the consequences subscale than the White-British sample, indicating a perception of a lower level of negative consequences in relation to their mental health difficulties (mean score 25.03 vs 37.73). This finding is interesting given the preponderance of research reporting on the higher level of mental health stigma in ethnic minority groups when compared to White-British groups (Shefer et al., 2013; Palmer, 2007).

Unlike previous research which found an association between a longer perceived timeline and GP visiting frequency (Broadbent et al. 2008), the current study found no significant relationship between perceived timeline chronicity and attitudes towards accessing help from services. A lack of clarity exists in terms of the exact association between attitudes towards accessing help and actual help-seeking. It could be the case that positive attitudes do not necessarily predispose one to actual service access and vice-versa. Another potential reason for the absence of findings could be the small sample size. In terms of the timeline cyclical subscale an association was found which indicated that a more cyclical mental illness timeline was related to a higher reported belief that individuals were willing and able to seek professional psychological help. Previous research found that a cyclical timeline was associated with anxiety, although it was not measured directly in the current study it may be the case that increased anxiety predisposed individuals to more openness to accessing help from services in terms of seeking reassurance (Lobban, Barrowclough, and Jones 2005).

No relationship was found between personal blame and IASMHS total or subscale scores. The subscale was excluded from previous analyses by Lobban et al (2005) due to low reliability and inconsistency which may have also had an impact on the current analyses.

Clinical implications

These findings suggest that the relationship between mental illness beliefs and attitudes towards help seeking is multifaceted. Some components of the different explanatory models of the current group (e.g. supernatural causes) could be seen to indicate the need for culture-specific approaches to the delivery of treatment. However, when compared to research with White-British samples, considerable similarity also appears to exist between these groups, perhaps indicating the need for person centred approaches delivered by culturally competent clinicians.

The negative association between illness coherence and help-seeking propensity is inconsistent with previous research. It would be helpful to examine this relationship further in terms of identifying the different content of ‘coherent’ perceptions and determining which what type of content predisposes individuals to positive and negative attitudes towards services or predisposes them to actual help-seeking. It may be that ideas that do not align with a ‘western’ explanatory model of mental health difficulties, although coherent, do not predispose them to access help from mental health services. It could also be the case that the coherent ideas, consistent with diagnoses of schizophrenia and other psychoses may reflect unusual beliefs or fixed ideas which act as a barrier to service engagement.

A need for clear objective psycho-education for individuals on their diagnosis and associated mental health difficulties is indicated. However, an acknowledgement of the preponderant ‘Western gaze’ conceptualisation of mental health difficulties (Lehti et al. 2010) and a recognition of the need for open discussions between mental health professionals and service-users involving culture-specific understandings of symptoms and associations is also indicated. This points to the need to train staff in more culturally competent and person-centred ways of discussing the service-users own explanatory models. Which given the effects of acculturation and media, are informed by a combination of the individual’s host and native country rather than depending on culture-specific stereotypes. This could indicate the utility of training staff in the development of collaborative psychological formulations. The utility of which is supported by previous research which has shown that therapeutic relationship and service-user satisfaction improved when service users and clinicians shared an explanatory model for their difficulties (Priebe et al. 2005).

At the start of this research project emphasis was placed on online advertisement and recruiting participants to complete study materials through the online platform created. However, despite the use of various social media advertising approaches, the method was largely unsuccessful. Potential reasons for this lack of engagement were hypothesised to include trust issues with mental health services in both this diagnostic and ethnic group (Campbell, Cornish, and Mclean 2004; Goepp 2006), potential reduced access to online means in BME populations (Ennis et al. 2012) and more severe symptomology and medication (Singh et al., 2015) perhaps negatively affecting the group’s motivation and concentration to engage online. Given that there is a movement within the NHS to increasingly deliver mental healthcare interventions online (Mental Health Taskforce, 2016), the attempted use of online recruitment strategies for the current study has clinical implications in terms of increased support for BME groups regarding the provision of technology to engage with health information technology.

 

Limitations

There are a number of limitations to consider in interpreting the current results. Although most participants completed the questionnaire face-to-face, one completed it over the phone and one other used an online platform. These different mediums may have had an impact on results generated. The sample size is quite small, which limits the generalisability of the study findings and detection of smaller effect sizes. We used self-report diagnoses and broadened our inclusion criteria to include three participants who had a self-reported diagnosis of bipolar disorder with psychosis which may be considered to be a limitation of the study. The rationale to include participants with bipolar was the overlap that exists between the diagnostic constructs of bipolar disorder and schizophrenia (Laursen, Agerbo, and Pedersen 2009). Similarly, the study depended on self-reported diagnoses that were not validated by the study researcher. The reason that diagnoses were not validated by the researcher was that it was recognised during the study’s design phase that a tool to verify diagnoses could not be utilised uniformly across the various questionnaire administration platforms. All study participants had either previous or current access to mental health services, however a measure on service experience and actual help seeking behaviour was not administered. This may have been a confounding variable and the lack of measurement may therefore be a potential limitation

Conclusion

To the knowledge of the researcher this study was the first to investigate the relationship between mental illness perceptions and attitudes towards accessing help from services using the in an African-descended UK sample. The study has shown that the relationship between mental illness beliefs and attitudes towards accessing help from services is complex and multifaceted. Endorsement of social rather than biological causal factors are reported. Some findings contradicted previous research and assumptions and require a more in-depth examination, e.g. the relationship between illness coherence and help seeking propensity. Person centred approaches, objective psycho-education and training staff to deliver interventions and approach service users in culturally competent and curious ways are implicated in the research.

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Paper three: Critical Appraisal

This paper was not prepared for submission to a journal. For reasons of uniformity with the previous paper the Chicago author-date referencing style will be used.

Systematic review – background

African-descended people in the UK are more likely to be diagnosed with severe mental health difficulties, e.g. the literature has shown rates of schizophrenia and manic psychosis to be more elevated in African Caribbean and Black-African groups than White-British groups (Fearon et al., 2006; King et al., 2005). In addition to this, research has shown that African-Caribbean and Black-African groups tend to have more negative pathways to care than White-British service-users. These groups were found to be less likely to access care through a general practitioner and more likely to be involved with criminal justice agencies (Morgan et al. 2005). For the current review, the initial idea was to look at the barriers to accessing formal help in African-descended groups (e.g. help from professional services who had a role in providing support for mental health difficulties) but a scoping search indicated that a similar review had recently been undertaken (Cordelle et al. 2016). However, the specific sources of support that were opted for by UK based African-descended groups remained unclear. When speaking about a pathway model of care for Black patients in the UK, Gray (1999) highlighted the importance of including voluntary sector services, schools, places of worship and traditional healers – as same would match more closely the help-seeking narratives of Black people.  Another scoping search was carried out which showed sufficient literature on the topic. The current review paper attempted to take a systematic look at these wider support preferences for psychological difficulties in African-descended groups in the UK.

Rationale for mixed-methods approach

The rationale for carrying out a mixed-method review for the current study was that we wanted to look not only at the sources of support that were being sought by African-descended groups but we also wanted to gauge what their attitudes were towards accessing this support on their own behalf. It was discussed amongst the research team how the latter part of the research question would be more likely to be answered by descriptive qualitative style research (as outlined by Harden and Thomas, 2005).

Search terms

The review search terms were developed in line with guidelines outlined by Dundar and Fleeman, 2014. The research team were consulted in relation to synonyms and base terms. This led to the exclusion of the terms ‘attitudes’ and ‘opinions’ and the inclusion of ‘West-Indi*’. Subsequently the systematic review library service was consulted via email and phone in relation to the list of the terms, research question and selection of databases. This resulted in the inclusion of the database ‘social policy and practice’ to the database search to draw out the cultural element of the search. References were imported to and managed in Mendeley.

Inclusion and exclusion criteria

As stated in the review paper much disagreement and debate exists amongst certain authors regarding the definition of help-seeking (as outlined in Rickwood, Thomas, and Bradford, 2012), whereas others are critical of the disregard of individual-level models of help-seeking as they do not take into account the complexity of the role and impact of social factors on help-seeking behaviours (see MacKian, 2003 for a full discussion). Much deliberation took place on the wider research team in relation to whether a definition of help-seeking should be utilised to frame the review’s inclusion/exclusion criteria. One of the main points in need of clarification was the differentiation between self-help and self-coping, as many of the studies generated in the scoping search used the terms interchangeably. The definition that appeared to most appropriately distinguish between the two concepts was the one which made it clear that help-seeking (including self-help) was the attempt to obtain ‘external assistance’ (Rickwood, Thomas and Bradford, 2012) , by association self-coping was defined by strategies that could be used by individuals that did not require one reaching for something external to themselves. Another inclusion criterion which was discussed at length was that there needed to be an indication on the paper that the help/service was being sought by the person rather than being an acceptance of a help that is being offered. Discussions amongst the research team concluded that a record of service attendance does not necessarily indicate that the individual actually sought out that help for themselves or showed a preference for it rather it may be that it was a service provided to them that they didn’t decline, e.g. one study showed how participants were in receipt of outreach support, either through home visits or visits to the hospital ward where they were resident, but this doesn’t indicate that they sought out this help (Secker and Harding 2002). Equally, papers that outlined pathways to care and how people from African-descended groups were more likely to access care through criminal justice means do not indicate preference (e.g. Morgan et al., 2005).

Contacting authors

Authors were contacted for additional information on publications (n=5), they were commonly asked for an ethnic-specific breakdown on help-seeking data provided. The majority did not furnish the trainee with the required information (n=3), however one researcher did supply a dataset and the associated codes for review for information related to self-reported GP help-seeking for stress. Another contacted to say she no longer had access to the dataset used.

 

Quality assessment – Strengths and weaknesses

Following consideration of multiple tools, the quality assessment tool for studies with diverse designs (QATSDD), was chosen for the current review. A weakness of the tool was that the scoring of some of the quality assessment indicators was vague (see Fenton, Lauckner, and Gilbert 2015 for a full discussion). The trainee tried to more clearly operationalise indicators to allow for consistent scoring across studies (see appendix X). For example, with item 5 which was ‘representative sample of target group of a reasonable size’ it was unclear whether one was to judge the representativeness of the sample in terms of the review or the sample that the studies attempted to recruit. Due to the nature of qualitative research in terms of its focus on specificity rather than generalisability this item could be seen to be biased towards quantitative research. However, following discussion with the research team the decision was made to interpret the ‘representativeness of the sample’ indicator in terms of the sample the review was hoping to encapsulate (e.g. African-Caribbean and Black-African etc. rather than one ethnic group) rather than in terms of the sample individual studies were aiming to recruit. This was discussed with the research team prior to the utilisation of the tool and clarified with the other quality assessor. On reflection it may have been more useful to split this indicator for the qualitative and quantitative research and perhaps focus on whether the sample recruited for qualitative research was selected in a way that minimised bias.

Implications

Findings suggested that African descended UK-based groups accessed help from a variety of sources, at times simultaneously. The implications of the review findings are also discussed in the text. A potential preference for ethnic matching of client and therapist is indicated by some review participants. However, practical and conceptual issues around this process, e.g. the dearth of black therapists and the potential dissimilarity of therapist-client dyads matched on race, are discussed, indicating the need to increase cultural competence training for mental health professionals. This recommendation is repeated in relation to signposting to culture specific services, given their instability and potential unsustainable nature. Implications for further research are also discussed. One area of research is examining the interactional process that takes place when GPs are presented with clients who are experiencing mental health difficulties, whether the signs that are picked up on present cross-culturally and perhaps whether training on different distress ‘display rules’ have an impact on GP detection rates for mental health difficulties. Another area of research which could be developed upon could look at uncovering which components of informal help provision are useful and perhaps an exploration of how such supports could be encouraged and monopolised.

Empirical paper

Choosing the sample

Recognising the significant heterogeneity and diversity that exists within and between groups of people described as ‘African-descended’ in terms of factors such as ‘histories, religions, languages, ethnicities and cultures’ (Gilroy 1993, 54) at the planning stages of the study the trainee and wider research team placed a significant emphasis on considering the ethnic make-up of the study sample. The impact of these cultural differences and similarities in relation to mental illness beliefs and attitudes towards accessing help from services were reviewed specifically. Similarities were found to exist in the mental-illness causal beliefs  of both African-Caribbean and Black-African samples in terms of supernatural causes (Ilechukwu 1988; Rathod, Kingdon, Phiri and Gobbi 2010; Shefer et al. 2013) previous wrongdoing (Rathod, Kingdon, Phiri, and Gobbi 2010; Mantovani, Pizzolati, and Gillard 2017) and racism (Ward, Clark, and Heidrich 2009; O’ Conner et al. 2010). Whereas where attitudes towards services were concerned research showed that themes of suspicion, distrust, avoidance (Frank Keating and Robertson 2004) and generally negative views of services (Secker and Harding 2002) were common amongst African-descended groups more generally, perhaps perpetuated by institutional racism and discrimination (Metzl in Lane 2010; Spector 2001).

Given the similarities described between Black-African and African-Caribbean groups across the factors discussed above it was decided to opt for the increased generalisability of an African-descended sample over the specificity of a more ethnic specific sample. An emphasis therefore being placed on drawing on collective rather than differential cultural constructs within the group. Caution was taken in the write-up of the paper in terms of being tentative about the inferences made regarding this varied group and the limitations of the approach (cannot make inferences about specific cultural processes/constructs).

 

Small-scale measure refinement of the Illness Perception Questionnaire for Schizophrenia

The Illness Perception Questionnaire for Schizophrenia (IPQ-S; Lobban, Barrowclough, and Jones, 2005) is a well-established and validated measure. However, the current study required the addition of a small number of items to the causal beliefs subscale as people from African-descended ethnic groups were found to hold some causal beliefs about mental illness that were not common in the White-British population (the majority population that was used for scale development) and were therefore not included in the original scale. The procedure proposed for the small-scale refinement is outlined in the ‘measure refinement’ section in paper two. In the early stages of the project an exploratory factor analysis of the causal items was planned to identify the underlying factor structure of the causal beliefs subscale which could have in turn denoted explanatory models for distress. In assessing specific physical and mental disorder beliefs the IPQ is commonly adapted in terms of items being added and subtracted to increase the causal beliefs scale’s ability to assess specific elements of symptomology, subsequent factor analyses are also typically carried out (Moss-Morris, Weinman, Petrie, Horne, Cameron and Buick 2002; Weinman, Petrie, Sharpe and Walker 2000). In the early stages of project planning it was anticipated that we would recruit a sample size adequate for this analysis due to successes of previous ClinPsyD projects that recruited a sample of people with psychosis, although these projects had no restrictions in terms of the ethnicity of the sample. Unfortunately, as is outlined elsewhere in this paper, we did not experience the same level of success. Due to an insufficient sample size the latter part of the measure refinement was not carried out as a sample size of at least 100 participants would have been necessary for the execution of this analysis (Tabachnick and Fidell 2007). Because the structure of the questionnaire was altered it is likely that the internal reliability and validity of the findings were compromised. However, the alternative would have been to exclude potentially crucial causal belief items. Further research focusing on the validation of this questionnaire in African-descended samples is indicated.

Choosing measures

In terms of the study design it was aimed to maintain a compromise between participant burden and the administration of measures with enough questions that would allow for the development of a comprehensive picture of the outlined research components. Early on the research team discussed whether we should administer a measure on actual help-seeking rather than administering a measure on attitudes towards help-seeking. Measures such as the Actual Help-Seeking Questionnaire (AHSQ, Rickwood et al. 1994) and the General Help-Seeking Questionnaire (GHSQ, Wilson et al. 2005) were reviewed. The AHSQ is reported as three sub-scales which look at whether or not informal help, formal help or no help has been sought. The GHSQ uses a format that can be modified according to study purpose and need. Within this format, help sources and problem-types can be modified to meet sample characteristics and study requirements (Wilson et al. 2005). However, the Inventory of Attitudes toward Seeking Mental Health Service, although it did not include a measure of actual help sought did incorporate measurements on three factors which have been shown to be important attitudinal concepts, namely psychological openness, help-seeking propensity. and indifference to stigma. Due to the fact that previous research has suggested a higher level of mental health stigma in African descended groups the inclusion of the indifference to stigma subscale on the IASMHS was considered to be a strength of the scale. The scale was also shown to have more robust validity and internal consistency (Mackenzie et al. 2004; Mackenzie et al. 2006). In addition, previous rresearch has shown that actual help-seeking is correlated with attitudes towards seeking help (Mackenzie et al. 2006).

It was hypothesized by the research team that perceived discrimination may be a confounding factor in terms of attitudes towards accessing help from services. However, a review of the literature did not produce any measures that focused on discrimination experienced in mental health services. For example, the Perceived Racism Scale (McNeilly et al. 2006) focused on discrimination in work, academic settings and public places, the Telephone Administered and Perceived Racism Scale (TAPRS) focused on group and individual experiences of racism, emotional and behavioural responses, past experiences and concerns for children (McNeilly et al. 2006, see Atkins 2014 for a full review of measures). A previous trainee had a similar experience and as a result she developed a 2-item discrimination measure for her ClinPsyD project (understanding the nature of therapeutic relationships in severe mental illness, 2016). The questions on this measure were assessed on a 5-point likert scale from strongly agree to strongly disagree and were the following: mental health services discriminate against people (treat people unfairly) because of their racial/ ethnic background and mental health services discriminate against me (treat me unfairly) because of my racial/ ethnic background. This measure was deemed most suitable for the current project. On analysis the total measure scores were not found to correlate with any of the total or subscale scores.

A limitation of the study was the fact that participants diagnoses were not validated. Instead participants were asked to self-report whether they had a diagnosis of psychosis or schizophrenia and psychotic symptoms were measured using the Community Assessment Psychic Scale(CAPE, Stefanis et al., 2002), which as previously stated is a self-report questionnaire that measures the severity of psychosis-like experiences.. In the initial planning stages of the study it had been suggested that the structured clinical interview for DSM-5 (SCID) could be used to validate diagnoses. However, because of the high number of participants that I had been hoping to recruit online and the amount of time that it takes to complete a SCID it was decided against validating diagnoses. Some participants may have presented with somatic symptoms and cultural expressions of distress which may have been undetected by the IPQ-S identity scale and the CAPE measure of symptomology and distress.

Decisions around recruitment

Before the study proposal was reviewed at the Clinical Psychology Research Review Panel the recruitment plan involved recruiting participants from the NHS in addition to utilizing diverse recruitment strategies. However, the utility of including NHS recruitment was questioned at the panel, as it was assumed that the majority of responses were likely to come through online means. Subsequent discussions between research team members determined that NHS recruitment would not be sought and that emphasis would be placed instead on utilizing diverse recruitment strategies that were shown to be useful in recruiting ethnic minority populations (Waheed, Hughes-Morley, Woodham, Allen and Bower, 2015). However, given the considerable difficulties experienced in relation to recruiting through these alternative means, in hindsight it may have been advantageous to maintain NHS recruitment as part of the recruitment strategy.

 

Diverse recruitment strategies

Before the study proposal was reviewed at the Clinical Psychology Research Review Panel the recruitment plan involved recruiting participants from the NHS in addition to utilizing diverse recruitment strategies. However, the utility of including NHS recruitment and therefore applying for NHS ethics, was questioned at the panel, as it was assumed that the majority of responses were likely to come through online means. Subsequent discussions between research team members determined that NHS recruitment would not be sought and that emphasis would be placed instead on utilizing diverse recruitment strategies that were shown to be useful in recruiting ethnic minority populations (Waheed, Hughes-Morley, Woodham, Allen and Bower, 2015). However, given the considerable difficulties experienced in relation to recruiting through these alternative means, in hindsight it may have been advantageous to maintain NHS recruitment as part of the recruitment strategy. The following recruitment strategies were employed in the study. Next, these diverse strategies are detailed.

 

Community publicity – Manchester

Posters, flyers and advertisements.Posters and flyers were circulated to four BME third sector mental health charity organisations, 3 mental health specialist social housing projects, the University’s Community Liaison Group and to a Manchester-based leisure centre and library for dissemination to members. Advertisements were placed in the BME Network bulletin and in the Hearing Voices newsletter.

Community Events. Short presentations on the study were delivered at a Black History month event that was held at a BME mental health charity and at two events related to the dissemination of research findings from the NIHR Culturally Adapted Family Interventions project.

 

Online recruitment

Social media pages. Twitter and Facebook pages were created for the study. Facebook posts were circulated and the study was ‘tweeted’ about using appropriate hashtags and requesting retweets from people and organizations it was thought might have potential participants amongst their followers, e.g. hearing voices group pages, mental health advocates (focusing more on those who stated that they had a BME focus), charity pages, celebrities who were vocal about mental health issues and ‘movement’ pages such as Black Lives Matter. Content relevant to mental health and wellbeing was shared on the page to garner interest, gain more followers and therefore a wider reach. Other researchers who utilised online methods to recruit an online sample of people with psychosis advised that a more useful time, in terms of participant responses, to be active on social media was in the evenings and weekends. Analysis of Facebook activity in terms of number of post clicks was carried out which showed a similar pattern for the current campaign and so it was at these times that the researcher predominantly focused on utilising social media.

Facebook Advertisement Campaigns. Two Facebook study adverts were created using ethics-approved content and were targeted towards US and UK audiences consecutively. The adverts ran for a period of two-weeks each on a set schedule from 16:00 to 01:00 every day in line with the time-zones of the countries in which they ran. Census data was utilised so that specific geographic locations, that had higher percentages of African-descended people, were targeted in each country (Rastogi 2011). Areas in America where the population-percentage of African-descended people was reported as being 55% and above were targeted, in addition to some other densely populated city boroughs (e.g. Brooklyn, the Bronx) that had a relatively high percentage of African-descended people living there. Data provided by Facebook on the campaign showed that the advert reached 5834 people and that 890 of them clicked the link.

Website adverts and support group forums. Online advertisements were released on the University of Manchester’s Researching African-Caribbean Health (ReACH) web-page and on the Citizen Scientist website. Adverts for the study were posted in support group forums, e.g. yahoo schizophrenia group.

Community Publicity and Social Capital– London

The online strategy was unsuccessful and the need for a more proactive face to face approach to recruiting participants from community groups was implicated. A short presentation was delivered at a community wellbeing event in London which was attended by representatives from various South London based BME mental health organisations, mental health service-users, carers and family members. This led to liaison with various BME mental health charity representatives and an extended visit to London to promote the study and support service-users to complete questionnaires in two BME mental health community charities and one user-led arts-focused mental health charity.

Cohen and Prusak (2001) describe social capital as the ‘stock of active connections among people: the trust, mutual understanding, and shared values and behaviours that bind the members of human networks and communities and make co-operative action possible’ (4). The support for the current study by a well-respected and connected BME community service leader in London, who had a high level of social capital, was integral to successful networking and participant recruitment in the area. The trainee came to understand that many people associated the educational institution that she was coming from with the mental health services that were strongly distrusted. This further highlighted the need for support from this and other community representatives.

Hearing voices group

Flyer and poster advertisements were disseminated to hearing voices groups in areas that census data indicated were populated by a higher percentage of African-descended people (Office for National Statistics, 2011). These included two groups in Manchester, one in Sunderland, one in Birmingham and nine groups in various London locations.

Participants recruited from other studies

The researcher attempted to contact 30 participants who had previously taken part in one/more other studies. These were the Culturally Adapted Family Intervention (CaFI) project and affiliated student projects. The CaFI project was funded by the National Institute for Health Research (NIHR) Health Service and Delivery Research Programme (project number 12/5001/62). The primary aim of this study was to test the feasibility and acceptability of a culturally adapted family intervention among African-Caribbean service-users (Dawn Edge et al. 2016). All of these projects, apart from the main CaFI project, had the same participant inclusion criteria as the current project and participants had previously consented to be contacted by other researchers. The inclusion criteria for the CaFI project focused on participants who were of African-Caribbean descent only rather than incorporating participants of Black-African descent, i.e. participants had to have at least one African-Caribbean parent/grandparent to participate.

See figure X for participant CONSORT flow diagram and table 1 for information on recruitment uptake.

Table 1: Information on recruitment uptake
Where participant heard about the research (n)
    Mental Health Event 4 (11.8%)
    Hearing Voices Group 1 (2.9%)
    Contacted by researcher (past research) 14 (41.2%)
    Approached by researcher at community project 2 (5.9%)
    Approached by staff at community project 13 (38.2%)

 

Number approached (n=58)*

Number responded to adverts/publicity (n=7)

Total (n=65)

Declined to participate (n=16)

Did not meet inclusion criteria (n=3)

Unable to contact participant (n=11)

Total (n=30)

Eligible (n=35)

Consented (n=35)

Completed full battery (n=34)

 

 

 

 

 

 

 

 

Refusal to answer majority of questions (n=1)**

 

 

 

 

 

Figure 1. Participant Flow CONSORT.

*Given the various recruitment and publicity strategies that were executed, a number of participants were approached by the researcher or community organisation staff members whereas others responded to adverts/other means of publicity.

**Although this participant agreed to take part in the study it became clear after completing a small number of questions that they did not identify with the diagnosis they had been given which prohibited meaningful completion of the questionnaire.

 

 

 

 

Online response and consultation with community representative 

Despite the online recruitment efforts outlined above only two people attempted to complete the questionnaires online (one of whom had been recruited through face to face means and the other only completed the screening questionnaire). Given that we knew that 890 people had clicked the link which brought them to the page with the study’s participant information sheet (PIS) the research team speculated whether there may have been an issue in relation to its accessibility. Following this, the trainee consulted a community representative on wording of the PIS. However, the suggested modifications were minor. The exact reason for people not completing the questionnaire online was unclear. Not meeting ethnicity or diagnostic criteria in addition to people not being offered a tangible incentive for taking part online may have all been factors. The trainee met a lot of people who worked with African-descended groups with mental health difficulties during the project’s completion. Some anecdotal accounts on the potential barriers to people completing questionnaires online echoed previous research, e.g. the suggestion that trust issues (Campbell, Cornish, and Mclean 2004; Goepp 2006) and the physical impact of high doses of medication (which was more likely to be prescribed to this population, Lloyd and Moodley 1992) were barriers. However, suggestions that African-descended groups were less likely to have access to online means were unfounded (Office for National Statistics 2017). Additionally, people from African-descended groups have been shown to have more severe psychosis symptomology which may have an impact on their cognitive skills (Singh et al. 2015).

Although the exact reasons are unclear the relative lack of an online response from the study sample has serious implications for mental health services which are increasingly moving towards delivering services through online means. However, it could be the case that people from African-descended ethnic groups are less likely to engage with this medium, perhaps due to issues of trust and an awareness of institutional racism and others previous negative experiences in service, and therefore may be left behind. As is discussed in the discussion of the empirical paper the importance of increased support for people from these groups to access such resources or offering alternative interventions is implicated.

The mental illness beliefs paradigm

The content of the study questionnaire was framed in a way that assumed experiences related to the diagnosis of schizophrenia were conceptualised by participants as ‘mental health difficulties’ that correspond with specific diagnostic frameworks and thus through a westernised psychiatric lens. The questionnaire was predominantly framed in a way that assumed mental health symptoms were negative experiences (e.g. only one question was framed in a positive way – ‘my mental health problems have had some positive effects on my life’), with questions labelling experiences as symptoms, difficulties and a source of loss. This dominant categorical framework varies from the post-psychiatric standpoint of the hearing voices approach which encourages conceptualising such experiences as aspects of human difference and potentially meaningful life experiences rather been separated off and termed ‘problematic’ (Hearing Voices Network 2018). Given the nature of questionnaire research no flexibility could be provided in relation to opening up to whatever framework participates viewed their difficulties from. This may have acted as a barrier to research engagement for hearing voices group members. One participant’s questionnaire was excluded after completion due to the fact that they did not perceive themselves as having mental health difficulties, which was a necessary way of conceptualising experiences, in terms of answering questions from the ‘mental illness beliefs’ questionnaire.

Assumption of fair service for all

No measures were administered on previous experiences of mental health services or participants actual help-seeking behaviour, which may have been confounding variables in the relationship between attitudes towards services and mental illness beliefs were administered with the research questionnaire. Early in the study process discussions did take place amongst the research team regarding same and it was concluded that due to the administration of an already high number of measures that battery completion should be prioritised over adding extra measures. However, a resultant assumption of the study questionnaire could be seen to be that a fair package of care is provided to all by mental health services, e.g. lower likelihood to access help from services is due to beliefs rather than previous experiences/inequities that exist within service provision. Yet, in the last 20 years the treatment of black men by mental health services has shown this assumption to be unfounded, with reports of numerous deaths due to fatal injuries inflicted during restraint by mental health workers highlighting the failure of the Delivering Race Equality program (2010) which was rolled out in relation to the David Bennett inquiry report (Samuels 2010). With this context in mind, accounts of Black service users having negative experiences of services, being more likely to distrust and be fearful of services are unsurprising. Placing  blame on Black people for not accessing help from primary care services considering the inequity, discrimination and institutional racism that has been shown to exist with the NHS is in and of itself unfair. Anecdotal accounts from service-users and community membersencountered over the course of the current study revealed an awareness of the failure of mental health services to implement recommendations from previous equality initiatives, which led to a feeling of further disappointment, hopelessness and distrust.

Reflexivity and reciprocity

During the research process the trainee reflected on how cultural identity was not solely dependent on race but was impacted by a diverse combination of influences. The trainee reflected on the potential power dynamics related to working as a white researcher with people with mental health difficulties from African descended minority groups. Often this dynamic did not play out in an overt way but as the subtext to conversations with participants and community representatives.

The trainee had an interest in the relational conceptualisation of interactions as outlined in cognitive analytic therapy (CAT) and at the time of the project’s completion was carrying out an elective placement in the modality in a psychotherapy service. In writing about race in the therapeutic space Brown and Msebele (2011), two CAT practitioners and authors, stated that White and Black may helpfully be thought of as an archetypal and/or institutionally embedded reciprocal role that is structurally maintained and re-produced in our social and economic relationships. In relation to this they also discuss how inferior-superior role relations can become the blueprint for all reciprocations, whether complied with or rebelled against. In relation to the African-descended participants and staff encountered in the current research sphere at times the trainee detected a sense of hopelessness, a fear of being taken advantage of and of being treated unfairly. At times this was perceived to present as queries around the utility of the research in the face of institutional racism. At other times a recognition of the trainee’s Irish identity as being different to a White-British identity appeared to appeal to people, some referencing the infamous ‘no Blacks, no Irish, no dogs’ phrase perhaps as a point of contact or mutual understanding of ‘otherness’. An understanding to understood reciprocal role was perceived to have been embedded in this acknowledgement rather than something that was developed during the interaction. In terms of the clinical implications of race-relations and racism in the therapeutic context Heron (2005) cautioned against a tokenistic acknowledgement of privilege which may ‘strike a chord for racially-aware members of the dominant group [but] does not necessarily unsettle its operation’ (344). Instead she calls for a more complex ongoing process of self-awareness, which is likely to be more complicated and perhaps uncomfortable for the therapist, but which may indicate a more meaningful attempt at opening up a conversation about race relations. Brown and Msebele (2011) acknowledge the fallibility and authenticity of therapists in relation to this process arguing for the ‘acknowledgment of race and racism: even if it is done clumsily or tentatively, because to do so at least lays the groundwork for authenticity and demonstrates commitment to a more honest and respectful dialogue’. As the research progressed the trainee realised the need to be transparent in terms of her intention, role and reasons for being interested in and getting involved in this type of research. She reflected on how there was a need for increased reciprocity in working as a researcher in comparison to her clinical work in terms of being more open about herself with those she was working with.

 


[1] When the term ‘African-descended’ is used in the current study it is in reference to people who identify as ‘African-Caribbean’, ‘Mixed African-Caribbean’, ‘Black-British’, ‘Black African’ or ‘Mixed Black African’. When discussing other research, the author will utilize the ethnicity related term from the study being discussed, for this reason terms such as Black-Caribbean and African-Caribbean may appear to be used interchangeably.

[2] Results on this measure were not given for the African-descended sample specifically. Scores reaching a ‘clinical’ threshold on this measure were not an inclusion criterion in the study.

[3] When the term ‘African-descended’ is used in the current study it is in reference to people who identify as ‘African-Caribbean’, ‘Mixed African-Caribbean’, ‘Black-British’, ‘Black-African’ or ‘Mixed Black-African’ (Office of National Statistics, 2015). ‘African-descended’ people are not a homogenous group, considerable cultural heterogeneity between and within African-Caribbean and Black-African groups has been shown to exist in terms of diet, religion, migration experience and history, education, language, beliefs and health behaviours (Elam, McMunn and Nazroo cited in Agyemang, Bhopal, and Bruijnzeels, 2005). However, points of contact also exist between these groups in terms of common experiences such as combined experiences of racism and mental health stigma leading to social isolation (Secker and Harding 2002). In terms of the current research topics considerable similarity exists between the groups. Namely, higher rates of schizophrenia (Qassem et al. 2015) similarities in terms of attitudes towards services (e.g. fear and mistrust) and mental illness beliefs, such as the belief in supernatural causes (KAPI paper reference, Rathod, Kingdon, Smith, and Turkington, 2005; Cinnirella and Loewenthal, 1999; Bettmann, Penney, Clarkson Freeman, and Lecy, 2015) and previous wrongdoing as a cause (Rathod, Kingdon, Phiri, and Gobbi 2010). It is for this reason that the current study focused on an ‘African descended’ group.

[4] These are responses to the open-ended IPQ-S question: ‘Please write the term/label that you feel best describes your mental health problems’

[5] 5 participants chose to not give a response to this question.

[7] The questions that made up the distress subscale were ‘branched questions’, i.e. participants were only required to these questions if they answered frequency scale questions in a way which indicated presence of symptoms. In the current analyses only one participants observed information on all 42 distress items and Cronbach’s alpha therefore could not be calculated.

[8] Bearing in mind that not everyone listed themselves as experiencing all symptoms and that people could allocate more than one attributional factor for individual symptoms

[9] Other factors were the factors that were listed by only one person. The included poverty, hearing a really loud noise, lack of confidence, depression, medication error, lack of employment, bad luck, problems with emigration status, gang related lifestyle, evil people, having a baby and not having appropriate housing.

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