An ethnic-group comparison of caregiver beliefs about early psychotic illness in a UK sample: Implications for evidence-based caregiver interventions

Abstract

This study aimed to investigate potential ethnic differences in cognitive responses to caregiving in psychosis that might be relevant to the delivery of caregiver interventions for difficulties related to psychosis. We compared cross-sectional outcomes across early-stage caregivers who self-identified as white British (n = 37) and those who self-identified as black African or Caribbean (n = 41) using United Kingdom (UK) census ethnicity criteria. Self-report questionnaires were used to examine caregiver beliefs about psychosis, including the perceived causes, consequences, timeline, the degree of control that patients have over their difficulties, as well as their appraisals of caregiving. Caregivers from black African or Caribbean backgrounds reported a significantly shorter expected duration of illness than white British caregivers. They were also more likely to cite psychosocial causes (e.g., relationship issues), and less likely to cite biological and genetic causes, as their principal explanations for problems. However, overall differences in perceived causes of illness between ethnicities were not significant, despite the power in this sample to detect medium-sized effects. Factors associated with ethnicity may contribute to individual differences in explanatory models of illness and in experiences of caregiving. A degree of sensitivity to the range of views that people might hold about psychosis may help to engage caregivers from diverse ethnic backgrounds.

Keywords

caregivers ethnicity illness beliefs models of illness psychosis

Introduction

Evidence has indicated a higher incidence of psychosis among certain ethnic minority populations by comparison with the white British (WB) population in the United Kingdom (Kirkbride et al., 2017). The highest rate of psychotic illness has been reported among people who are black and who identify as of Caribbean or African descent (Kirkbride et al., 2012; Qassem et al., 2015). Further disparities between ethnic groups have been observed in access to, and experiences of, clinical interventions for these difficulties (Ajnakina et al., 2017). For example, studies suggest that black males in the UK are more likely to access frontline Early Intervention Psychosis (EIP) services via emergency or criminal justice routes, rather than through general practitioners (Anderson, Flora, Archie, Morgan, & McKenzie, 2014; Ghali et al., 2013). Black Caribbean and black African patients also have worse clinical and service outcomes over time than do WB patients (Morgan et al., 2017). Certain studies, although not all (Peters et al., 2015), have recorded higher dropout rates from treatment among non-WB individuals (Kreyenbuhl, Nossel, & Dixon, 2009; Rathod, Kingdon, Smith, & Turkington, 2005; Turkington, Kingdon, & Turner, 2002). As a result, debate continues over how to respond clinically to the needs of diverse communities, and to ensure the acceptability and efficacy of recommended treatments for potentially more marginalised ethnic groups (Edge et al., 2016; Rathod et al., 2013; Weisman, Duarte, Koneru, & Wasserman, 2006).

National treatment guidelines for schizophrenia and psychosis, for example, the UK National Institute for Health and Care Excellence (NICE) (2014) guidelines, recommend information and support for caregivers, alongside cognitive behavioural therapies and medication. The recent consideration of caregivers in treatment guidelines acknowledges both the central role that caregivers are known to play in facilitating positive outcomes from treatment for patients (Doyle et al., 2014; Garety et al., 2008; Ramírez García, Chang, Young, López, & Jenkins, 2006) and the specific toll that caregiving in psychosis may take on their own health and wellbeing (Del Vecchio et al., 2015; Fridgen et al., 2013). Internationally, a range of evidence-based interventions for psychosis caregivers has been developed, from brief needs-led sessions, through self-led online programmes, to more intensive Family Interventions (Claxton, Onwumere, & Fornells-Ambrojo, 2017; Lobban, Glentworth, et al., 2013; Roddy, Onwumere, & Kuipers, 2015). A core aim of these psychological interventions is to increase understanding about the potential impact of psychosis on caregivers and to increase the confidence and coping skills of the caregiver in managing difficulties (Onwumere, Grice, & Kuipers, 2016). As such, tailored psychoeducation that targets beliefs about psychosis is a common and principle component in caregiver interventions (Lobban, Postlethwaite, et al., 2013; Yesufu-Udechuku et al., 2015) and is one of the few specific recommendations made for caregivers within treatment guidelines (National Institute for Health and Care Excellence, 2014).

Therapeutic work with beliefs about psychosis in caregivers is based on research that has shown that individual conceptualisations of problems/illness are strongly predictive of responses to caregiving, including levels of distress and attitudes towards patients (Jansen, Gleeson, & Cotton, 2015; Kuipers, Onwumere, & Bebbington, 2010; Onwumere et al., 2017). Strongly held negative views about the consequences and timeline of illness, for example, predict distress in caregivers (Barrowclough, Gooding, Hartley, Lee, & Lobban, 2014) and the belief that a patient has more control than they seem to be demonstrating over challenging behaviour can lead to patient blame and criticism (Barrowclough & Hooley, 2003; Fortune, Smith, & Garvey, 2005).

Few studies have attempted to analyse caregivers’ beliefs about psychosis across ethnicities in the UK (Patel, Chawla, Krynicki, Rankin, & Upthegrove, 2014). Yet evidence from patient samples suggests that differences in perceived causes of problems may be observable at an ethnic group level and may be influential in determining treatment outcomes (Bhui & Bhugra, 2002; Bhui, Rüdell, & Priebe, 2006; McCabe & Priebe, 2004; Singh et al., 2015; Upthegrove, Atulomah, Brunet, & Chawla, 2013). Greater endorsement of “supernatural” causes, for example, alongside “psychosocial” or “biological” causes (as common categorisations) has been associated with greater consultation with faith-based institutions among black and Asian patients in the UK and with reduced acceptance of pharmacological treatments elsewhere (Caqueo-Urízar, Boyer, Baumstarck, & Gilman, 2015; Singh et al., 2015). Additionally, perceived capacity to gain control over one’s difficulties has been associated with completion rates of individual cognitive behavioural therapy for psychosis, irrespective of illness severity (Freeman et al., 2013). An examination of potential ethnic differences in the perceived causes and consequences of problems among early psychosis caregivers may therefore reveal important variations, which ought to be considered when identifying those at risk of distress and carer burden and when considering engagement and satisfaction with treatments.

As part of a wider research project investigating ethnic differences in caregiving processes in psychosis (Smith, 2013), the current study aimed to examine specific illness beliefs across ethnic groups in caregiver populations and to explore their associations with appraisals of caregiving as a predictor of caregiver distress (Barrowclough, Lobban, Hatton, & Quinn, 2001; Leventhal et al., 1997). The study focused on the core cognitive representations of problems/illness as specified within a self-regulatory model (Leventhal et al. 1997). Consistent with the findings of the only known study of illness appraisals in psychosis across relevant ethnicities in the UK, it was predicted that black African and black Caribbean (BA_BAC) caregivers would endorse more psychosocial and less biological illness causes than WB caregivers (McCabe & Priebe, 2004).

Methods

Procedure

Ethical approval for the study was granted by the Berkshire Research Ethics Committee (REF: 10/H0505/79). Participants were recruited via EIP services across London. The EIP services are multidisciplinary community mental health teams in the UK that provide rapid assessment and support for people experiencing a first presentation of psychosis or who are at high risk of developing psychosis (National Institute for Health and Care Excellence, 2016). The EIP services support typically continues for 3 years and aim to provide a range of evidence-based interventions for people with psychosis and support for their caregivers (National Institute for Health and Care Excellence, 2014).

Caregivers self-identified and were identified by patients as fulfilling a main caregiving role. To be included in the study, they had to have maintained regular contact with the patient for at least 10 hours per week, with a minimum of one face-to-face interaction per week, over a period of at least 3 months. Questionnaires were completed for the study as part of a longer face-to-face interview. In addition to the measures detailed below, a standard form was used to collect information on caregiver and patient socio-demographic characteristics, including ethnicity (self-identified using UK Census ethnicity criteria, 2001), country of origin, and number of years as a permanent UK resident. Caregivers reported patient characteristics, including age, gender, number of admissions, and estimated illness time in weeks (calculated from first presentation at emergency services in which a diagnosis was given or registration date with EIP teams).

Measures

Brief Illness Perceptions Questionnaire (BIPQ) (Broadbent, Petrie, Main, & Weinman, 2006)

The Brief Illness Perceptions Questionnaire (BIPQ) is a 9-item measure of cognitive and emotional representations of illness (Broadbent et al., 2006). The core constructs in the measure reflect those specified in a self-regulatory model, which proposes that individuals’ cognitive responses to a health-threat form around distinct components that predict illness-related behaviours, relationships with service providers, and resultant health outcomes (Leventhal et al., 1997). The BIPQ was adapted from the full-scale IPQ and has shown moderate to good associations with the original scale (Weinman, Petrie, Moss-Morris, & Horne, 1996). Minor changes to the text were made in the current study to make it appropriate for use with caregivers, following previous studies in caregivers of individuals with psychosis, for example, how much control do you believe your relative has over their problems/illness (Barrowclough, Lobban, Hatton, & Quinn, 2001; Kuipers et al., 2007; Lobban, Barrowclough, & Jones, 2005). Items were examined that assessed the perceived negative consequences for caregivers (BIPQ_conseq), the expected duration of problems/illness (BIPQ_timeline), and perceived patient control (BIPQ_control). Additionally, perceived causes of problems/illness were examined. In the final BIPQ item, caregivers were asked to list the three most important causal factors in rank order. This approach is considered superior to those scales that assume that the first response given is held as the principal causal belief (Broadbent et al., 2006). Clarifications were sought by the attending research clinician for any ambiguous responses.

Experience of Caregiving Inventory (ECI) (Szmukler et al., 1996)

The Experience of Caregiving Inventory (ECI) is a 66-item questionnaire designed to measure caregiving experiences, with a particular focus on subjective appraisals made by relatives of patients with severe mental health problems (Szmukler et al., 1996). It is one of the most frequently used measures of caregiving appraisals in psychosis and is strongly correlated with other measures of caregiver distress (Jansen et al., 2015). The negative subscale (ECI_neg) is a sum score of 52 items across the domains: Difficult behaviours, negative symptoms, stigma, problems with services, effects on the family, the need to provide back-up, dependency, and loss. The positive subscale (ECI_pos) is a sum score of 14 items assessing rewarding personal experiences and good elements of the relationship (Szmukler et al., 1996). The instrument has demonstrated good reliability and validity with family members of those with psychosis (Joyce, Leese, & Szmukler, 2000) and the constructs and content have been deemed both acceptable and important to caregivers (Harvey et al., 2008).

Multi-Group Ethnic Identity Measure (MEIM) (Phinney, 1992)

The Multi-Group Ethnic Identity Measure (MEIM) is a 12-item questionnaire designed to assess feelings or reactions to ethnicity (as self-ascribed from a predefined list). It has been validated across ethnic groups and age groups (Phinney, 1992). It was selected for the current study as a broad measure of affirmation, belonging, or commitment to one’s ethnic identity. Hence, we used it as an indicator of the likelihood that factors associated with ethnicity might be influential in guiding one’s beliefs about psychosis. It includes items such as “I am active in organizations or social groups that include mostly members of my own ethnic group.” Overall mean scores are used for comparison. Evidence suggests that mean scores for WB populations are typically lower than for other British ethnic groups (Phinney, 1992).

Data analysis

Qualitative data gathered from the final item of the BIPQ was content analysed and coded into categories a posteriori following the principles of thematic analysis described in a study by Braun and Clarke (Braun & Clarke, 2006). Responses to the question “Please list in rank-order the three most important factors that you believe caused your relative’s problems/illness” were initially coded into 11 categories: (1) genes/inherited/chemical, (2) personality/individual differences, (3) cannabis/substance misuse, (4) physical illness, (5) other mental illness, (6) trauma, (7) family/relationship issues, (8) stress, (9) peer pressure/social influence, (10) sleep deprivation, and (11) other environmental causes. Initial coding was conducted by the first author, LS, who had facilitated the interviews and measures completion with all participants. A randomised sub-sample of responses (approximately 20%, n = 45) was coded blind by a second rater, JO. Cohen’s K was calculated to assess inter-rater agreement over and above the level of chance. According to Cohen, there was “substantial” agreement between the two coders (K = 0.645, 95% CI, 0.490–0.800, p < .005, percent agreement = 65%) (McHugh, 2012). Categories were then combined by discussion, blind to frequency counts by ethnicity, to form four groupings that we hypothesised might relate to treatment decisions or interactions with services, and that might enable comparison with previous studies in patients: Biomedical (1,4,5,10), substance misuse (3), psychosocial (2,6,7,9), and environmental (8,11). Please see Appendix 1 for category example responses and post-hoc cell counts by ethnicity (supplementary material can be found online with this article).

Statistical analysis

Power analyses indicated that a total sample size of N = 80 would have 80% power to detect medium effect size differences, in accordance with Cohen (1988), in the range r = 0.31–0.39 for categorical analyses of proportionate differences in perceived causes of illness, degrees of freedom = 1–4, using a 0.05 alpha level (Cohen, 1988). The distributions of variables were examined graphically. Transformation procedures were attempted for skewed variables (Tabachnick & Fidell, 2012). Group differences in demographic data and outcome variables were assessed using t-tests and Mann–Whitney U tests for continuous variables and chi-squared or Fisher's Exact Tests (FET) for categorical variables. An estimation of effect size was calculated for Mann–Whitney U comparisons using eta-squared (Fritz, Morris, & Richler, 2012; Lakens, 2013). Multiple linear regression was used to examine the relationships between illness beliefs (perceived consequences and duration of illness, and perceived patient control of symptoms) and appraisals of caregiving. Scatterplots and Q-Q plots were inspected to assess linearity, normality, and homoscedasticity. Multicollinearity of independent variables was tested on the basis of Variance Inflation Factor values, and autocorrelation of residuals using the Durbin Watson statistic (Durbin & Watson, 1950, 1951). All analyses were conducted in SPSS 22 (IBM Corp. Released 2013. IBM SPSS Statistics for Mac, Version 22.0. Armonk, NY: IBM Corp).

Results

First-episode caregivers: Demographic data

A total of 78 caregivers participated in the study. Demographic details by ethnic group are given in Table 1. Caregivers were most frequently mothers, looking after a son or daughter in the home. A high proportion of participants were living with the relative to whom they provided help and support (78%). The only statistically significant difference between the ethnic groups in patient or caregiver demographic characteristics (including illness-related variables and face-to-face contact time) was current living arrangements. BA_BAC caregivers were significantly more likely to be living with extended family members than with an individual partner (p < 0.001, FET).

Table 1.

First-episode caregiver characteristics: Ethnic groups.

Proportions in % Multi-Group Ethnic Identity Measure score: t (74) = 4.17, p < .0001	Black/African/ Caribbean/British (BA_BAC) 3.1 ± 0.6	White British/Irish (WB) 2.5 ± 0.6
Number of participants	41	37
Sex	88% female	84% female
Age (mean years)	51.2 ± 8.1	52.7 ± 9.6
Employment status
Full-time paid	37	14
Part-time paid	12	33
Self-employed	15	13
Unemployed/sick leave/incapacity	24	27
Retired/volunteering/studying	12	13
Formal education^a
A level & above	52	35
GCSE/NVQ/BTEC	40	51
No qualifications	8	14
Weekly income^b
≤£149	27	27
£150–£329	32	41
£330–£459	15	8
£460 or more	27	24
Accommodation
Owned outright	15	35
Owned with mortgage	42	35
Rented/social housing	43	30
Living arrangements
Alone	3	8
With partner	27	62
With extended family	70	30
Marital status
Single	46	22
Married/civil or long-term partner	52	68
Divorced/separated/widowed	2	10
Relationship to patient: Parent	96	84
Living with patient?	78	78
Face-to-face contact (hours)	Mean = 15.7 ± 10.6	Mean = 19.3 ± 15.2
Patient: age	Mean = 24.7 ± 4.5	Mean = 24.7 ± 5.1
Sex	66% male	70% male
Illness length (weeks)	Median = 88, min = 16, max = 313	Median = 75, min = 7, max = 565
Number of inpatient admissions	Mean = 0.9, min = 0, max = 4	Mean = 1.2, min = 0, max = 4

Or international equivalent.

Household income given in the absence of personal income.

The ethnicities reported by the BA_BAC caregiver sample were as follows: Black British (of African/Caribbean descent) = 42%, Black Caribbean/African–Caribbean = 32%, Black African = 27%. Forty-two percent (17/41) of the BA_BAC sample were born and raised outside of the UK and moved to the UK as adults (mean length of time in the UK = 24 years). The majority were either born in the UK or moved with parents to the UK permanently before 10 years of age. Approximately 84% of the WB sample self-identified as white British and were born in the UK (31/37). The remainder chose to self-identify as white Irish or white European but had lived in the UK for most of their adult lives (mean = 28 years, 6/37). As expected, BA_BAC caregiver participants scored significantly higher than WB caregivers on the MEIM measure of ethnic identity and affiliation (t (74) = 4.17, p < .0001).

Ethnic differences in illness beliefs

BA_BAC caregivers expected a significantly shorter duration of illness than WB caregivers, see Table 2 (U = 465.5, p = .005, η² = 0.11). The eta-squared statistic indicated that 11% of the variance in perceived length of illness might be explained by ethnicity in this sample. This is a medium to large effect size in accordance with Cohen (1988). No further differences were observed in perceived consequences of illness or patient control of symptoms.

Table 2.

Ethnic differences in illness beliefs and appraisals of caregiving.

	Total (n = 78)		BA_BAC (n = 41)	WB (n = 37)	U	p ^a	η²
	Mean	Range	Median, IQR	Median, IQR	U	p ^a	η²
BIPQ_conseq	6.8	0–10	7.0, 5–10	7.0, 5–9
BIPQ_control	5.4	1–10	5.0, 4–8	6.0, 3–8
BIPQ_timeline	6.4	1–10	5.5, 5–7.75	8.0, 5–9.5	465.5	.005	0.11
			Mean, S.D
ECI_neg	76.9	8–167	77.8 ± 30.5	76.0 ± 39.4
ECI_pos	30.0	9–55	31.4 ± 9.9	28.6 ± 8.4

Only significant differences shown. Significance value is given as p = 0.005.

As their principal explanation for illness, BA_BAC caregivers less frequently cited biomedical causes, for example, genes or chemical imbalance, and more frequently cited psychosocial causes, for example, trauma or relationship issues than did WB caregivers (Figure 1). However, overall differences in proportions were not statistically significant χ² (3, 74) = 5.39, p = 0.15 (see Appendix 1, non-codable responses excluded, n = 4). Moreover, disparity in the categorical responses between the groups was minimized further when all three ranked responses were analysed in cumulative comparisons. Yet the directions of difference remained the same, for example, BA-BAC caregivers continued to cite cannabis/substance misuse more frequently than WB caregivers in cumulative comparisons.

Figure 1.

Principal explanations for illness across ethnic groups.

The relationship between illness beliefs and experiences of caregiving

Caregivers held equivalent levels of positive (t (76) = –1.34, p = 0.18) and negative appraisals of caregiving (t (76) = 0.234, p = 0.81), see Table 2. Multiple linear regression was used to test whether illness beliefs (perceived consequences and duration of illness, and patient control of symptoms) significantly predicted appraisals of caregiving. A significant regression equation was found for negative appraisals of caregiving (F (3,73) = 19.068, p < 0.001), with an R² of 0.416. The results of the regression indicated that greater perceived negative consequences of illness (β = 0.451, p < 0.001) and less perceived patient control of symptoms (β = –0.247, p < 0.05) explained 41.6% of the variance in negative appraisals of caregiving. Perceived timeline of illness explained no further variance, although it correlated positively with negative appraisals of caregiving (β = 0.136, p = 0.17). None of the illness beliefs examined predicted positive appraisals of caregiving.

Discussion

Ensuring the suitability of treatments and their delivery for diverse groups of people is an issue that is pertinent across medical disciplines (Chu & Leino, 2017; Escoffery et al., 2018). Public mental health services operate on the basis of evidence-based practice (Drake et al., 2001). Yet demographic changes in the UK and elsewhere have increasingly led researchers and clinicians to consider the representativeness of their relevant evidence base over time (Dinos, 2015; Kirmayer & Ban, 2013). The research questions for the current study were influenced by concerns about the acceptability and efficacy of existing evidence-based interventions for ethnically diverse caregivers and were set against a backdrop of increased incidence of psychosis in black African and Caribbean communities (Edge et al., 2016; Rathod et al., 2013). We chose to focus on key caregiver cognitions about early psychosis and the process of caregiving itself, as these are common targets for a range of cognitive-behavioural interventions that aim to reduce caregiver distress and to improve supportive interactions with patients. Our research therefore aimed to assess whether modifications to the core content of interventions for caregivers might be required, as opposed to more “surface” processes, for example, language, timing, or set-up of sessions (Resnicow, Baranowski, Ahluwalia, & Braithwaite, 1999).

Our results suggested that factors associated with ethnicity may influence certain beliefs about psychotic problems. In this sample, caregivers from BA_BAC backgrounds were more likely to expect a shorter duration of illness than WB caregivers. However, contrary to our hypothesis, there were no other statistically significant differences in the perceived causes of problems reported by caregivers across the ethnic groups, or in perceived negative consequences or patient control. The possibility of null findings being influenced by Type 2 error must be considered. Yet the study was adequately powered and the recruited sample sizes were greater than those reported in other studies that have observed significant differences in illness beliefs across ethnic groups (e.g., Patel et al., 2014). One explanation for disparities in findings is that BA_BAC caregivers in the current study had resided in the UK for several years. There may therefore have been more commonalities in the experiences of this sample of caregivers of different ethnicities than in other studies.

The finding that BA_BAC caregivers perceive a significantly shorter duration of illness is intriguing, given that the first standardised epidemiological studies of schizophrenia, conducted internationally by the World Health Organization in the late 1960s, led to a prolonged debate about possible prognostic differences across countries (Cohen, Patel, Thara, & Gureje, 2008; Esan, Ojagbemi, & Gureje, 2012; Hopper, Harrison, Aleksandar, & Sartorius, 2007). It was initially observed that individuals diagnosed with schizophrenia in economically “developing” countries might have a better prognosis than those in Western nations (Jablensky et al., 1992; Sartorius et al., 1986; Sartorius, Jablensky, & Shapiro, 1977; Sartorius, Shapiro, Kimura, & Barrett, 1972). The binary “developed” versus “developing” nations distinction was subsequently abandoned in favour of a more nuanced understanding that social and cultural factors appeared to modify outcomes (Jablensky & Sartorius, 2008). However, it is possible therefore that a shorter perceived illness duration amongst BA_BAC caregivers reflects some influence/experience of actual cross-cultural prognostic differences. Other factors that might vary by ethnicity that could explain a difference in the expected timeline of illness would include accessibility to accurate information about psychosis or religiosity, for example. BA_BAC caregivers in the current sample were also more likely than WB caregivers to cite psychosocial determinants as their principal explanation for illness. Although the observed difference was not statistically significant across the groups, a shorter perceived duration of illness in BA_BAC caregivers may reflect divergent views about contributing factors to psychotic problems and their potential resolvability. Further research would be required to explore which specific aspects of ethnicity or culture might influence differences in illness beliefs and other cognitive processes in caregiving.

Implications for evidence-based caregiver interventions

The observation that people of different ethnicities may have alternative expectations of psychotic problems certainly underscores the need to assess fully people’s understanding of illness early in communications with families and to involve caregivers where possible (Islam, Rabiee, & Singh, 2015). Previous research has shown that individuals may hold multiple, competing, and even contradictory beliefs about illness (Bhui & Bhugra, 2002; Islam et al., 2015; Singh et al., 2015) and that therapeutic relationships are stronger if there is a shared conceptual understanding (Freeman et al., 2013; Sen, 2017). A comprehensive assessment of illness appraisals offers the opportunity to evaluate and initiate discussions about the perceived suitability of treatments (Bhui & Bhugra, 2002; Caqueo-Urízar et al., 2015) and to provide accurate and accessible information about the certainties and uncertainties of aetiology and recovery in psychosis (Kuipers, 2010).

It may be that practitioners require further training or different tools to work with families from diverse backgrounds and to meet established clinical competencies in cross-cultural assessment and formulation (Lewis-Fernández et al., 2017; Roth and Pilling, 2013). There is a wealth of research that has been invested into the development of training programmes for cultural competencies and debate continues as to the efficacy of existing programmes in improving patient satisfaction with mental healthcare (Clegg, Heywood-Everett, & Siddiqi, 2016; Govere & Govere, 2016; Schouler-Ocak et al., 2015). Supervision for clinicians by experts who work transculturally has also been recommended in the NICE guidelines for schizophrenia and psychosis (National Institute for Health and Care Excellence, 2014).

The results from the regression analyses in the study also provide some validation that the cognitive targets of existing interventions (i.e., beliefs about patient control, consequences, and timeline of illness) remain predictive of negative appraisals of caregiving, even in a sample of mixed ethnicities. Notably, however, the illness beliefs examined were not correlated with positive appraisals of caregiving and this may also represent an area for future research (Kulhara, 2012).

Experimental design

The decision to conduct a comparison in illness beliefs across broad ethnic groups needs some discussion. Investigating variations in psychological constructs across people from different sociocultural contexts is widely recognised for the methodological challenges it presents (Canino, Lewis-Fernandez, & Bravo, 1997). Current views of culture accurately conceptualise this aspect of human experience as something fragmented, fluid, and context-specific, more than a sum of parts, and not just residing within an individual (Kirmayer & Ban, 2013; López & Guarnaccia, 2000). These are notions that are difficult to reconcile with a system of evidence-based practice that is limited, to the extent that it largely depends on population-based sampling and the development of universal treatments for identifiable groups of people (Greenhalgh, Snow, Ryan, Rees, & Salisbury, 2015; Hunt, Schneider, & Comer, 2004). The use of ethnicity as a proxy for culture in the current study has obvious limitations, as further discussed below. However, we selected this approach because we were concerned, in the first instance, with answering the question whether practitioners should be doing something different in their dealings with a group of people that were identified as vulnerable to illness in previous research. It was assumed that for any effect to be translatable into a change in the proposed content of psychological interventions for caregivers, it would need to be large enough to be observed across broad categories. However, there remains a debate over the potential ethical and practical issues associated with having multiple culturally adapted interventions for multiple ethnic groups, for example, the risk of typecasting or alienating people in the assignment of interventions (Dinos, 2015).

Limitations

There were several limitations to the current study. First, the brief measure used for illness beliefs may have overlooked more comprehensive or alternative conceptualisations of mental illness. The study was a preliminary investigation and there was a strong evidence base to support the clinical significance of both the theoretical framework and the quantitative measure used. However, potential future research might aim to employ a mixed-methods or ethnographic approach to allow for a deeper understanding of the topic. Second, it is likely that differences in illness beliefs that were observed across the groups of caregivers are not related directly to ethnicity per se, but rather to other factors associated with ethnicity, which the study was not designed to assess, for example, locus of control, knowledge of mental illness, or optimism. Future research should aim to focus on single specific cultural dimensions that are hypothesized to relate to core elements of caregiving (Bhugra & McKenzie, 2003; Knight & Sayegh, 2010; O'Driscoll, Sener, Angmark & Shaikh, 2019). Third, homogeneity within the ethnic groups cannot be assumed and the results are therefore limited in their generalisability to other ethnic groups in the UK or elsewhere. Finally, there was also inevitable overlap in the coding of perceived causes of illness into categories. For example, the profound effects of trauma on mental health are both biological and psychosocial (Christopher, 2004). In accordance with the principles of thematic analysis, responses were categorised in such a way as to best describe the data and to inform potential inferences about the perceived suitability of recommended interventions (Braun and Clarke, 2006).

Conclusion

The issue of addressing ethnic inequalities in mental health services was given particular prominence in UK government policy during the period 2005–2008 (Department of Health, 2005). However, work remains ongoing as to how best to respond to the challenges that ethnic differences present for statutory mental health services, particularly within the field of psychosis (The Schizophrenia Commission, 2012). With the feasibility of translating research findings into practice in mind, research might consider framing cultural hypotheses in terms of how the results might relate to adaptations in the content, format, or delivery of recommended interventions to improve services for diverse groups of people. We focused here on particular ethnic groups in the local demographic that had been identified in previous research as vulnerable to mental healthcare inequalities, namely, BA_BAC individuals. However, this is not the only ethnic minority population in the UK to have a reported excess incidence of psychosis or to experience barriers to treatment. It would be helpful if future research and any subsequently proposed adaptations to caregiver interventions are made on the basis of ensuring suitability and efficacy for all.

Supplemental Material

TPS900596 Supplemental Material - Supplemental material for An ethnic-group comparison of caregiver beliefs about early psychotic illness in a UK sample: Implications for evidence-based caregiver interventions

Supplemental material, TPS900596 Supplemental Material for An ethnic-group comparison of caregiver beliefs about early psychotic illness in a UK sample: Implications for evidence-based caregiver interventions by Lindsay M Smith, Juliana Onwumere, Tom KJ Craig and Elizabeth Kuipers: on behalf of the eGFR-C Study Group in Transcultural Psychiatry

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This article represents independent research partly funded by the National Institute for Health research (NIHR) Biomedical Research Centre at South London and the Maudsley NHS Foundation Trust and King’s College London. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

ORCID iD

Lindsay M Smith

Lindsay M Smith, MA (Oxon), MSc, PhD, DClin, is a Clinical Psychologist working at the National and Specialist Child and Adolescent Mental Health Services within South London and the Maudsley NHS Foundation Trust, London, UK. She holds an Honorary Research Affiliation with the Institute of Psychiatry, Psychology and Neuroscience, King’s College London. Her research and clinical interests relate to the issue of widening access to effective psychological interventions within diverse communities.

Juliana Onwumere, PhD, DClin, is a Senior Lecturer in the Department of Psychology at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London. She is a Consultant Clinical Psychologist in the South London and Maudsley NHS Foundation Trust in London, UK. Her research and clinical interests are focused on family issues in psychosis, particularly improving the development, training, and wider provision of family interventions. She developed the first international massive open online course (MOOC) on caring for people with psychosis and schizophrenia ().

Tom KJ Craig, MBBS, PhD, FRCPsych, is Emeritus Professor of Social Psychiatry at King’s College London, Institute of Psychiatry, Psychology and Neuroscience. His published works focus on mental health services research, psychosocial interventions, and epidemiological studies of disadvantaged and minority populations.

Elizabeth Kuipers, OBE, PhD, DClinPsy, FBPsS, FAcSS is Professor Emerita of Clinical Psychology at the Institute of Psychiatry, Psychology and Neuroscience, King's College London. She was the Chair of the National Institute of Health and Clinical Excellence (NICE) Psychosis and Schizophrenia updated treatment Guideline for England and Wales in 2014 and 2009. Her published works focus on developing and understanding interventions in psychosis; carer and family interventions, and individual cognitive-behaviour therapy. In 2018, as part of the UK New Year Honours List, Elizabeth was awarded an OBE for services to psychosis research, treatment and care.

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