Summary study characteristics of the included articles are shown in Table 2. Articles were published over a 23-year time period (1999 to 2022), mostly in academic journals (56/66). Papers focused on the experiences of adults and young people and a mix of service users/carers (n = 21), communities (n = 18), service providers (n = 7), with some articles including information from a combination of lay, service user, and provider perspectives with experience of both statutory and voluntary sectors (n = 20). Studies focusing on service experiences were mostly located in secondary care (n = 27). Articles included information on the experiences of people from 14 different ethnic groupings from 15 UK cities/regions. A list of all included papers is provided in the supplementary table (S2 Appendix).
Key interpretative metaphors
We identified 12 interpretative metaphors relevant to our research question. Table 3 shows how these metaphors relate to second-order constructs and provides a summary of each construct, using the language and key phrases of the authors and study participants where possible. Metaphors are listed in a temporal sequence categorising key transition points relating to help-seeking, access, experience, outcomes, and desired changes. These are categorised as:
- Practical barriers that prevent or stall help-seeking or help-giving, which relate to the shortage of resources (Metaphor: “It’s not possible”)
- Fears and concerns about service access and provision that relate to anticipated costs and benefits (Metaphors: “Not allowed”; “Not worth taking the risk”; “Epistemic tensions”; “It’s useless”; “Turned all the stones”)
- Experiences and consequences of service use (Metaphors: “Battling against”; “Turning away”; “Turning towards”; “Falling through the net”; “Victim of the system”)
- Desired solutions and changes to mental health services (Metaphor: “Business as usual is not enough”).
The organisation of metaphors in these categories does not imply linearity. However, this approach provided a valuable starting point for organising the data, particularly in terms of understanding the relationships between access, experience, outcomes, and desired changes.
Reciprocal and refutational synthesis
The reciprocal synthesis found strong resonance in the experiences of study participants in relation to the key metaphors. These metaphors were meaningful regardless of gender and age groups, across long established ethnic minority groups in the UK, more recent migrants, and refugee groups, and across communities, service users, and providers. The perceived dominance of a biomedical and “Eurocentric” model of mental healthcare and exclusion of alternative epistemological frameworks was identified as a powerful theme that cut across metaphors relating to access, experience, outcomes, desired solutions, and barriers to progress. The current system of care was perceived to be designed for people from white British backgrounds and experienced as meaningless, oppressive, and outdated. This related to the perceived reduction of individuals to labels and symptoms and exclusion of social, racial, religious, and other cultural aspects of illness and person during clinical assessment and treatment. This is discussed in detail in the line of argument synthesis below. An important common theme across ethnic groups in terms of positive experiences was that participants were seeking a safe space to be seen, heard, and understood in the context of their lived experience without judgement or bias. In this context, nonstigmatising and expressive modes of therapy were highly valued including talking therapy and creative therapy.
A nuanced analysis of accounts that appeared refutational revealed universal themes in relation to the importance of good supportive relationships, trust, and accommodation of cultural diversity in the provision of support for mental illness. It was difficult to make generalisations about the experiences of a specific ethnic group given the nature of sampling in qualitative research and lack of information on participant intersections (i.e., by generation, social class, social deprivation). Moreover, this was not the intention of our analysis as this is generally an inappropriate use of qualitative methods. However, we did note that certain themes were more powerful for some groups than others. For example, the impact of systemic racism and oppression was a particularly powerful theme in research focused on African Caribbean/African/black groups. Services appeared to be most challenged in meeting the needs of ethnic groups who had complex needs (including severe trauma) and fragile social circumstances (unemployment, housing difficulties) such as refugees and asylum seekers. We found that the most distressing accounts of service use were located in narratives from these ethnic groups. While clinical diagnoses were experienced as oppressive across all ethnic minority groups, the storylines differed depending on the extent of social oppression and marginalisation experienced by individuals and communities. In this context, we identified important intersections relating to experiences of racism, social marginalisation, migration status, the role of faith and spirituality in a person’s life, English language literacy, experiences of complex trauma, fragility of social circumstances (including employment, housing), and the presence of supportive informal networks.
Line of argument synthesis
While we used all three methods of interpretive synthesis, we found that the line of argument synthesis provided a better conceptualisation of and fit for emerging themes and the complex relationship between the metaphors. The line of argument synthesis conceptualises how experiences of trauma, including interpersonal, systemic, and institutional dimensions of racial oppression, collide with autocratic and monocultural service responses to create ethnically differentiated experiences of mental illness and healthcare. The results of the line of argument synthesis are depicted visually in Fig 2. All of the concepts in the line of argument build upon and relate directly back to first-order accounts. Fig 2 highlights the complex recursive relationship between service access, experience, and outcomes. Below, we discuss the line of argument synthesis highlighting refutational accounts where relevant to our research question. Unless otherwise stated, the literature referenced in this section are papers included in our meta-ethnography and as such constitute the evidence on which these themes are based.
Oppression and the medical model of illness.
We found that experiences of oppression such as racism impacted help-seeking for symptoms of mental illness across ethnic minority communities. Participant accounts revealed that experiences of racism have multiple interrelated oppressive, social, economic, and traumatic consequences. Experiences of everyday racism [52,54–70], and the trauma such experiences produce, erode mental health, well-being, and capacity and trust for formal help-seeking, particularly when they are replicated in different contexts and over time [56,62,65]. These include experiences of interpersonal verbal and physical racist attacks as well as institutional and societal racism. Participant narratives resonate with the concept of “racial battle fatigue,” which described the cumulative effect of racist micro- and macroaggressions on personal resources [71,72]. As highlighted in previous work , our synthesis shows that racist violence does not need to have been experienced personally for it to have an impact on an individual’s mental health and help-seeking for mental illness. Vicarious racism, and the psychological tension associated with living in fear of exposure to racist discrimination and violence (including in healthcare), is particularly strong for established ethnic minority communities who consider racism to be systemic in the UK. For example, historical experiences of slavery and everyday injustice in education and employment characterise experiences of the black community [48,56,57,65,74]. The fear of Islamophobia shapes experiences in Muslim communities [54,63]. For recent migrants, racialisation may be a new experience but they attribute this to negative societal stereotypes and narratives about immigration [67,69]. The indirect effects of racism on formal help-seeking for mental illness are highlighted in narratives describing how prejudice and negative stereotypes produce social [54,57,59,60,66,67,75–82] and economic [59,60,65,66,69,75,79,83] marginalisation. Financial constraints result in low personal resources, creating practical difficulties in accessing mental health support services, including those identified in the metaphor “it’s not possible” (Table 3).
Narratives around social explanations of illness were strong and consistent across the different ethnic minority groups explored. Participants made sense of distress as originating from social risk factors with mental illness seen as a “social problem” [49,54,56,63–67,69,74,75,78–80,84–90]. Social stressors were particularly overwhelming for ethnic minority groups who had recently migrated to the UK, particularly in response to civil war and conflict in countries of origin such as refugees and asylum seekers. These included social disruption (i.e., social isolation, unemployment), exposure to previous complex trauma, and dealing with the immigration system described as “a killer” and a significant source of anxiety “It’s like you are on death row waiting to die” [60,66,75,79,88].
Participants, including service providers, described how services based on (typically) biomedical/reductionist understandings of ill health deny the impact of wider structural determinants of health, as well as the importance of faith for managing mental illness for religious patients (see metaphor “Epistemic tensions”, Table 3). In addition, some participants perceived that mental health services were epistemologically “white”/“Eurocentric”/”racist” and not designed to meet the needs of people from ethnic minority groups [55–58,71,92–95]. Such experiences contribute to a sense of trauma and marginalisation. Participant accounts resonate with the notion of epistemic injustice , a form of hermeneutical injustice related to knowledge including exclusion, silencing, or undervaluing alternative interpretations [48,55–57,59,61,64,67,69,79,87,92]. Consequently, our synthesis showed that many people from ethnic minority groups are searching for alternative ways of getting help and healing compared to what is currently available to them in the way of a strictly western biomedical approach to mental health. While this concern may also apply to the white majority ethnic group, it was considered that the social model of mental illness had (even) more to offer to people where issues of race and culture were central to their lives: “The race and culture group doesn’t fit in the medical model at all” . Participants spoke about the need for integrated models of health where there was parity between social and biomedical models of mental illness and between service user and provider voices. This includes better attention to risk factors that have a disproportionate negative impact on the mental health of people from ethnic minority groups such as racism and migration.
Vulnerability and social survival in the context of existing marginalisation.
As our data show, racism operates, and can directly affect mental health, through the impact of negative stereotypes that present members of a particular ethnic group as inherently problematic and deviant [56,61,62,67,74]. Racism undermines an individual’s sense of personhood and validity and is experienced as traumatising, stigmatising, and disempowering. This includes producing experiences of spoiled/discredited or precarious/discreditable identities . Oppression related to racial identity can result in distress by generating feelings of powerlessness, injustice, and social defeat. In addition to the direct psychological consequences of living with a spoiled or precarious identity, those living with this precarity will take action to preserve or reinforce positive reflections on their identities, and avoid risks of further stigmatisation, which may directly undermine engagement with health services, especially when they are perceived to exacerbate this marginalisation. This is shown by the barriers to acknowledging mental distress identified in the metaphor “not allowed” (Table 3) [48,49,65,67,69,78]. Participants described how oppressive experiences do not allow the space for vulnerability and act as powerful disincentives to falling ill . Consequences include emotional suppression and the development of racialised identities such as the “strong black woman/man” in response to systemic racism and oppression [48,49,65,67,69,78].
Individuals also deny their experiences of mental ill health where this label risks undermining relationships within their existing social network. This includes a reluctance to acknowledge experiences of mental ill health among family members in an effort to prevent spoiling the identities of family members [64,76,78,83,91,95,98–101]. Formal help-seeking becomes synonymous with the acquisition of (additional) stigmatising and oppressive labels and diagnoses [48,81,88,89,102,103], particularly where faith and other communities and families encourage a view that (mental) illness is equated with weakness and moral failings [48,65,78,88,102–105]. A diagnosis of mental illness can therefore be seen as equivalent to a form of social death, which “cuts short any types of aspirations and hope” , particularly in the context of precarious minority identities, racist social exclusion, and strong interdependence in ethnic minority communities in response to that [49,69,75,78,81,88,89,91,102,103,106,107]. As such, for some families, the need for social survival in the context of social marginalisation results in emotional suppression and the censoring of conversations around mental illness [64,76,78,83,91,98–100,105]. Refutational accounts reveal that there is much heterogeneity between the attitudes of individuals, families, and wider communities in the extent to which mental illness, and formal help-seeking for mental illness, is perceived to be allowed [54,63,78,94,99]. Some participants thought that concerns about stigma and related pressures to suppress emotions and illness were exclusive to older/first generations , with evidence of young people finding formal help more acceptable [68,89,94,108]. The intergenerational tensions were revealed in narratives that indicated the presence of secrecy and parental disapproval in relation to service access . For refugee communities, especially unaccompanied minors, there was a particular fear that association with formal “mental” services would result in abandonment by social circle, social isolation, and homelessness . In this context, the word “mental” was experienced as highly stigmatising and this stigma extended to services and diagnoses that used this word.
Anticipated fears and costs of service access and provision.
The metaphor “not worth taking the risk” (Table 3) reflects concerns that the costs of help-seeking could easily outweigh the opportunities offered by seeking respite from the symptoms of poor mental health. In addition to these anticipated social costs, participants fear that they will not receive safe or equitable care within services themselves. Participants feared that their cultural preferences and beliefs (i.e., spirituality) and social problems would be pathologised as a mental disorder in services [83,85,87,89,95]. Other fears included being misunderstood by service providers in the face of linguistic and conceptual miscommunication (relating to the use of different concepts for illness between patients and doctors) as well as risks of confidentiality breaches [78,98,100], fears of structural racism [57,63,65,67,74,93,109], and medical harm [48,56,58,60,66,69,74,80,106,110]. These fears are related to the perceived lack of cultural competency in services including a lack of diversity in staff teams [48,74].
Our analysis revealed considerable resonance between professionals and lay communities, with ethnic minority staff discussing these fears in the context of their own marginalised identities within services that are perceived to be structurally and epistemologically “white” and “Eurocentric.” Actions by these staff to facilitate culturally or racially sensitive approaches to service delivery are considered too risky to attempt or even discuss within the clinical setting [92,111]. Practitioners also feel silenced when they witness, and attempt to report, racism in diagnostic and treatment decision-making [56,58]. Clinicians describe feeling inhibited in a medical system where it does not feel safe or acceptable to talk about religion or spirituality with their patients without being judged by their colleagues . Fear of rejection from the British medical community for being “anti-modern” or “unscientific” led to the suppression of concerns about the lack of attention to patients’ spiritual and religious needs in services . This related to the epistemological paradigm and culture of mental healthcare in the UK, which was perceived to be reductionist and racist. We found that ethnic minority staff, while more likely to recognise racist practice and respond to the cultural and religious needs of patients, often felt disempowered (within the wider organisation) to intervene. This allows ethnic inequalities in care to perpetuate and indicates that the presence of ethnic minority staff in services is not enough to tackle these. A service provider expressed that it was difficult for her and other ethnic minority staff in general to “fit in” and work in mental healthcare due to the presence of “institutional racism” and the feeling of being “watched and monitored” . The important role of institutional culture in medicine was highlighted by migrant psychiatrists (medically trained outside the UK) who discuss the negative implications of having to adapt their clinical practice to the UK context, from a holistic model that considered faith to a secular model where talk of religion was perceived to be controversial . We did not find any distinct patterns in relation to the use of spiritual explanations for poor mental health across ethnic or faith groups. Interestingly, among those who were not service providers, we identified strong refutational accounts in the extent to which spiritual/religious explanations of illness were perceived positively and/or conflicting with the biomedical paradigm [66,78,85,87,89,94]. Some participants attributed a tendency to view illness through a spiritual lens with low levels of education and mental health literacy [66,94,106]. However, closer inspection revealed a nuanced storyline that indicated a general recognition of the value of holistic illness explanatory frameworks and a desire for institutional cultural change that allowed faith-integrated approaches and better inclusion of, and attention to, religious and spiritual beliefs. These views were shared by communities, service users, carers, and psychiatrists [56,66,74,79,89,92].
Fears and concerns about formal help-seeking resulted in multiple attempts to identify alternative sources of support that would enable individuals to receive mental healthcare without the involvement with mainstream services. Participant narratives revealed that statutory services were commonly viewed, or accessed, as a last resort when “all the stones have been turned” and there is “nowhere else to turn” [51,56,69,76,89,107].
Key junctures in the help-seeking process.
The metaphors “turning towards” and “turning away” (Table 3) indicate key junctures in the help-seeking process and highlight experiences that result in engagement and disengagement with services, respectively. It is here that refutational accounts are the strongest. There were refutational narratives relating to turning towards and away from general practitioners (GPs), ethnically similar/dissimilar practitioners [71,93–95,98–101], and informal support [54,64,69,75,76,78,84–87,89,99,103]. In mainstream NHS services, GPs are positioned as the first port of call for help-seeking for mental illness, but most participants do not consider this approach useful. There is a perceived overreliance on medication among GPs, who “normally just give you tablets” , despite a preference among most participants for talking and trauma informed therapy. That said, some refugee minors appreciated the mood enhancing effects of medication as talking therapy was experienced as (re)traumatising due to its requirement to revisit earlier experiences . Other perceived limitations of GP practice included the short duration of consultations: “these aren’t 10-minute conversations you can have with someone!” particularly given the potential need to explain your cultural context and alternative conceptualisations of illness during that time [64,84,85]. Participants also suggest that GPs are “not qualified enough”  to deal with emotional distress [54,69,78,89,110]. Yet despite these perceptions of low benefit, GP settings were considered to be safer and less stigmatising than psychiatric hospitals [60,69]. Positive experiences with GPs were associated with characteristics of a good therapeutic relationship including approachability and trust “I just feel that I can talk to her, we just start talking about everything and anything” . Similar storylines emerged from refutational narratives relating to informal support. These accounts revealed the importance of good quality relationships in terms of safety, trust, understanding, and confidentiality [89,108]. The ethnicity of the practitioner did not always appear to be important if the fundamental qualities of a good therapeutic alliance were met [63,67,68,78,99,100]. However, for some participants, having a practitioner from the same ethnic group helped strengthen this therapeutic alliance, overcome linguistic barriers [84,99], and was considered key to recovery [54,64,69,78,85–87,99]. Ethnically dissimilar practitioners were preferred when there were concerns about judgement and confidentiality [98–101]. For example, South Asian GPs were perceived to be cultural gatekeepers of the community and thought to breach patient confidentiality [98,100].
Battling against the system.
Participants describe having to “shout to be heard” within mainstream services . They describe “battling against” a system which was not designed to support them, and which is seen to directly contribute to their sense of victimisation and harm [51,56,60–64,67,69,74,75,77,79–81,84,87,89,99,103,112]. People reflected on the problems of services that ignored the needs and preferences of clients and failed to provide holistic care, while denying the mental health and other consequences of the testimonial injustice, cultural pathologisation, and direct and indirect racist, verbal, physical, and symbolic violence they inflicted. The synthesis showed that these approaches resulted in service users “falling through the net” and feeling like the “victim” of a service unable to support them effectively (Table 3) [51,55,56,61–64,67,69,79,87,88,112]. Such experiences exacerbated people’s mental distress and their sense of systemic injustice and, for some, led to a “turning away” from the service entirely.
The persistence of “business as usual” in services, despite a plethora of existing evidence highlighting the problems and documenting community solutions and recommendations to improve care, was a source of frustration raised by service providers and people from ethnic minority groups [59,79,87,95]. The lack of progress despite numerous policies and recommendations was attributed to superficial attempts at coproduction and insufficient adoption of community solutions by services. Service providers suggested that community solutions were considered too radical for statutory services and commissioners to implement. In addition, service providers thought that the implementation of policies was discriminatory and done by seniors from “privileged middle class white male backgrounds” who were perceived to have little understanding of the needs of people from ethnic minority groups . Failures in coproduction and implementation of solutions exacerbated feelings of mistrust and created a sense of hopelessness. This was felt particularly strongly by people from African Caribbean communities where inequalities are considered most entrenched and where there have been multiple unsuccessful attempts to address them.
Business as usual is not enough.
As shown in Table 3 (metaphor “business as usual is not enough”), we found a wide array of solutions and recommendations in the literature. Table 4 presents a list of the key desired solutions and recommendations by each metaphor category relating to service access, experience, and outcomes. A major recommendation related to the need for a paradigm shift from traditional western “Eurocentric” and “medical” models of care to more democratic, holistic, and person-centred approaches [52,54,56,57,64,66–69,74,75,79,81,83,85,87–89,92,110–113]. Studies show that services and medical training should move away from a medical “symptoms and labels” approach to a “whole-person” understanding of distress . The third sector was identified as a source of holistic and nonstigmatising support and studies highlighted the need for better collaboration between statutory services, the third sector, and existing community assets. This was perceived to require the provision of financial and political support to third sector organisations and collaborative approaches that allowed statutory and community services to meet in the middle. Other suggested solutions included the removal of stigmatising language such as “mental” or “depression” from services, and better access to talking therapy, creative therapies, and well-being activities. Interestingly, while we found very few accounts relating to recovery and healing, these were all largely related to creative activities (see metaphor “turning towards”, Table 3). Creative engagement and expression of illness narratives was viewed as empowering, healing, and transformative [64,65,75,84,87,112]. This included storytelling and sharing of illness narratives, joining a singing group “release my feelings” and “heal my heart” , and journaling. Participation in qualitative research allowed participants to share their story and be heard, sometimes for the first time, and was experienced as therapeutic. In this sense, engaging with and making sense of the illness narrative through creative expression helped transform the illness experience (empowering/normalising/humanising). Stories were seen to allow and open the door to healing “I didn’t feel like an alien, it didn’t feel like an illness or a sick thing or a broken thing. I could see myself as a person who has gone through a lot and is reacting actually quite appropriately to the distress that has been heaped on her… So that was actually the turning point in my life” .
In addition, studies highlighted a need for community and workplace interventions to tackle forms of societal oppression and enable empowerment of people from ethnic minority groups, particularly the black community where the impact of systemic racism was considered to be deeply ingrained [56,57,59,64,65,74,88]. Studies highlighted that strategies to tackle ethnic inequalities in mental healthcare need to go beyond increasing recruitment of ethnic minority staff and must include empowerment of existing staff and the introduction of anti-racist approaches to tackle racist practice and cultural misunderstandings in clinical care [56,114]. This includes building capacity of service providers to deliver culturally resonant and anti-racist treatment and care through training [55,56,60,77,81,82,88,92,98,111].