Experiences of children and young people from ethnic minorities in accessing mental health care and support: rapid scoping review

Article history

The research reported here is the product of an HSDR Evidence Synthesis Centre, contracted to provide rapid evidence syntheses on issues of relevance to the health service, and to inform future HSDR calls for new research around identified gaps in evidence. Other reviews by the Evidence Synthesis Centres are also available in the HSDR journal.

The research reported in this issue of the journal was funded by the HSDR programme or one of its preceding programmes as project number NIHR135075. The contractual start date was in June 2021. The final report began editorial review in October 2021 and was accepted for publication in February 2022. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HSDR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.

Disclaimer

This report contains transcripts of interviews conducted in the course of the research and contains language that may offend some readers.

Copyright statement

Copyright © 2022 Coelho et al. This work was produced by Coelho et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This is an Open Access publication distributed under the terms of the Creative Commons Attribution CC BY 4.0 licence, which permits unrestricted use, distribution, reproduction and adaption in any medium and for any purpose provided that it is properly attributed. See: https://creativecommons.org/licenses/by/4.0/. For attribution the title, original author(s), the publication source – NIHR Journals Library, and the DOI of the publication must be cited.

2022 Coelho et al.

Inclusion criteria

The full final inclusion criteria are described in Appendix 1.

Stakeholder engagement

To inform our methods and description of findings, we engaged with two clinical/service topic experts (by e-mail). One (Professor Kam Bhui) was a psychiatrist and academic researcher with experience and interest in sociocultural risk and protective factors to prevent and reduce inequalities in population mental health and suicide, including understanding ethnicity as a driver of inequalities. The other expert advisor (Professor Julian Edbrooke-Childs) was a chartered research psychologist and academic researcher whose research focuses on empowering young people to actively manage their mental health and mental health care, with a particular focus on social inequalities.

Both advisors provided comments on the review protocol before it was finalised and provided valuable comments on a draft of the review’s report and findings before the discussion and conclusions had been written. The policy customers of this report, who were members of the DHSC’s mental health policy team, also had an opportunity to comment on a draft of the report (which contained the findings, draft discussion and draft conclusions).

Patient and public involvement

There was little time to recruit and involve young people from ethnic minorities early in the process of this rapid scoping review. However, through an intermediary organisation [Healthy Teen Minds (London, UK)], and using a relevant online network/e-mail list, we recruited three young black people (aged 21, 22 and 23 years, all identifying as male and with lived experience of accessing mental health support) to comment on our findings (see Scientific summary) and help us craft our Plain English summary.

Search methods

Bibliographic database searches were designed by an information specialist (SR) in consultation with the review team. Searches were carried out on 23 June 2021 in Applied Social Sciences Index and Abstracts [(ASSIA) ProQuest], Cumulative Index in Nursing and Allied Health Literature [(CINAHL) EBSCOhost], Health Management Information Consortium [(HMIC) Ovid], MEDLINE (Ovid), PsycInfo (Ovid), Social Policy and Practice (Ovid) and Web of Science (Clarivate Analytics).

Terms for the mental health conditions (as determined by the team) were combined with terms for the Office for National Statistics ethnic minority group categories (as defined for the 2011 national census). 25 These were further combined with terms for children and young people, and for the UK setting. 26 A qualitative study filter was added27 and studies were limited to those published from 2010 onwards. The full MEDLINE search strategy is shown in Appendix 2.

A later decision was made to limit to studies published from 2012 onwards and this was done during screening; see below. Reference lists for the final included studies were checked and forward citation chasing was carried out in Scopus (Elsevier).

Screening and study selection

As an initial calibration exercise of inclusion judgements, two reviewers applied inclusion and exclusion criteria to a subsample of search results (n = 50) and discussed the screening decisions. The calibration exercise was used to refine the clarity of the inclusion criteria to enable more consistent reviewer interpretation and judgement. This helped refine subtle boundaries/rules in applying the criteria and did not change the inclusion criteria themselves. For example, it clarified whether or not study abstracts needed to indicate if there were young people from ethnic minorities in the sample or subsample (our rule: yes, unless there was no information at all about the population characteristics, in which case investigate at full-text stage).

Following the calibration exercise, titles and abstracts of bibliographic database search results were independently screened by two reviewers. Disagreements were resolved through discussion. Full-text articles were retrieved and independently screened by two reviewers, with disagreements resolved through discussion (in consultation with a third reviewer when needed). When studies contained a subset of eligible participants, these were included when the majority of participants reflected the target population, or when data from eligible participants were reported separately. Papers excluded at the full-text stage are reported in Appendix 3.

Data extraction and quality assessment

Overview of included studies

Included studies were highly heterogeneous in terms of the type of mental health need, service setting, and ethnicity and age of the young people (Table 1). Table 2 provides a fuller description of the key characteristics of all included studies.

Note that the labels and categories used in the table (e.g. to describe the ethnicity of the samples) are those used in the original studies. By today’s conventions, we acknowledge that some of these labels [such as the acronym BAME (black, Asian and minority ethnic)] may no longer be seen as appropriate, that they may not reflect people’s self-perceived ethnic background and cultural identity, and that they may be a poor reflection of the true diversity among young people from different minority ethnic backgrounds.

Seven studies36–43 included a mixture of young people from different non-white British ethnic minority backgrounds, and six others30–35 had a mixture of young people from different ethnic minorities that also included some white British young people. Other studies were conducted in more specific, selected ethnic groups (black and Asian young people,54 Orthodox Jewish young people,50 South Asian young people,53 Pakistani and Bangladeshi young people,55 black British and South Asian British students,49 and mainly Afghan refugees45–48).

The populations of interest varied and included unaccompanied teenage refugees (typically from a wide range of Middle Eastern or North African countries), university students, school students and the general population of young people from different ethnic groups and with different mental health needs. Most studies were local to a particular British city or region, although four studies30,36,37,44,54 had study participants from several cities or regions across the UK. There was no evidence that any studies had been conducted among young people living in the south-west of England, or the south-east of England outside London, and only one study36,37 included some participants from Wales (Cardiff) or Scotland (Glasgow).

Correspondingly, given these different service contexts and populations of interest, the age range of the young people in the study samples also varied. In six studies31–33,40,41,51 the young people were all or mostly aged ≥ 18 years, and in seven studies34,35,38,39,42,43,45–48 they were all or mostly aged < 18 years. In six studies30,36,37,50,53,54 there was a wider age range, including children (aged < 16 years), older teenagers and those in their twenties.

The included studies have primarily been summarised in four overlapping groups:

1. studies of young people in particular circumstances or institutional settings (e.g. university students, refugees/asylum seekers) (n = 9)

2. studies among people with specific mental health needs (e.g. schizophrenia or psychosis, eating disorders, self-harm) (n = 14)

3. studies among people receiving specific treatments (e.g. CBT, multisystemic therapy) (n = 3)

4. other studies not already covered in the first three groups (n = 1).

It should be noted that the above four groups of studies are not mutually exclusive. For an outline of which studies are covered in which findings section of this report, see Table 3. For example, of the four studies about access to mental health care among university students, one32 was about experiences of living with schizophrenia while at university, and another53 was about barriers to help-seeking for eating disorders among South Asian students. As social stigma was a recurring factor affecting care-seeking and access to mental health services and support across a number of need groups and settings, there is a section summarising the relevant findings from across studies in which this was a key factor affecting service use or engagement.

Figure 2 shows that the majority of the papers or reports found were published quite recently within the 10-year period, with 16 published from 2018 onwards and five published in 2020 or 2021. 30,31,35,49,51 However, this may not reflect the years in which the studies were actually conducted (for example, the four papers by Majumder45–48 – published in 2015, 2016 and 2019 – were based on analyses of mental health service use in 2010 and 2011).

FIGURE 2.

Number of papers by year of publication.

Quality of included papers

The quality assessment of the included papers is shown in Table 4. We assessed the quality of each included paper or report (rather than each study) because many of the quality criteria in the Wallace checklist relate to how well studies describe and justify what they did and what they found, and this may vary between papers and analyses conducted for different purposes. 28

Overall, the majority of papers were of good quality and were sufficiently well reported to identify information about the aims, methods of data collection, and approaches to data analysis and interpretation. Seventeen of the 26 papers addressed > 10 of the 13 quality questions. The nine lower-quality papers, meeting < 10 of the 13 criteria, were those by Bunting et al. ,35 The Children’s Society,30 Chowbey et al. ,41 Davies Hayon and Oates,44 Fazel et al. ,36,37 Gleeson et al. ,54 Gray and Ralphs,55 and King and Said. 39

The most poorly reported aspect of studies was whether or not any claims to generalisability followed logically and theoretically from the data: in the papers by Bunting et al. 35 and Channa et al. ,33 the claims did not appear to clearly follow the data, and in a further 1730,34,36–41,43–47,51,52,54,55 of the 26 papers there was insufficient evidence to judge this. Other quality criteria frequently not met were making explicit the theoretical or ideological perspective of the author (or funder) (not met by 15 papers30,32,36,38,39,41,43–48,50,51,55) and giving consideration to any limitations of the methods or data that may have affected the results (not met by eight papers30,33,36,39,41,45,52,54). The methods of data collection were also judged not to be adequately described in nine of the papers. 35–37,39–41,49,54,55

Refugees/asylum seekers

Five studies focused on the mental health experiences of, and support or service use by asylum seekers and refugees; these were reported in nine papers, four of which were based on the same data set from the same lead author, Majumder, and two were on the same data set from Fazel et al. (Fazel,36 Fazel et al. ,37 King and Said,39 Davies Hayon and Oates,44 Hurn and Barron,38 Majumder45–48) (Table 5). In addition, Birch et al. 31 included some limited data from refugees; however, these are reported separately in Studies on access to other resources or support, as they focused on exposure to nature as a determinant of mental well-being, rather than access to formal mental health services.

The studies carried out among refugees and asylum seekers included some specific factors that suppressed acknowledgement of mental illness. Some extreme negative associations were expressed about mental ill health, raising concerns among young people that they would be treated with prejudice and rejection by friends and family if they were labelled as having a mental health issue:48

. . . For them it was mad, they are mad. So they should be put in mad asylums.

Carer48

. . . So sometime my friends don’t wants to be with me because I’ve got this problem.

Young person48

These fears could be compounded by mistrust of mental health services, the origin of which was attributed by some to their experiences in their home country and their experiences as a refugee:45

. . . didn’t say to anything about my problem, I didn’t tell it to anybody, you know, because I don’t trust anybody.

Type of participant not given45

In some cases, it was implied that this mistrust was associated with a fear of incarceration in a mental health facility:48

I say no I don’t want to go hospital to be with the mentals or that kind of people.

Type of participant not given48

Davies Hayon and Oates44 recognised the role that nurses can play in overcoming this mistrust among young refugees. However, to be in contact with mental health nurses, young people must already be engaged with the service. Breaking down negative perceptions could therefore be key to overcoming this initial barrier to access.

Some interviewee comments indicated that refugee minors may access mental health services via non-traditional routes, more frequently going through local authorities and teachers than following visits to a general practitioner (GP):44

When I joined the high school yeah . . . I tell my the teacher . . . I have this problem which can make me not concentrate . . . and she advised me to see X.

Type of participant not given44

The location of services may also be important in ensuring that refugees feel comfortable making contact. For example, Fazel et al. 37 found that two-thirds of participants preferred to be seen at school. However, experiences reported at school were varied, with some participants avoiding telling their teachers about their background as an asylum seeker for fear that they would be treated differently:

Just some of them, not all of them, just some of the teachers . . . they are like racist or . . . yeah and or like some of them would be really nice . . . We do want them to be nice, we want them to treat us like other students.

Brother37

Similarly, Davies Hayon and Oates44 highlighted the importance of being able to access mental health support via facilities commonly used by the population in question, including community centres.

In addition, the content of services could be improved through being tailored to suit the communication needs of refugees (e.g. accounting for culture, language, age and experiences). One example is that the Arabic-speaking service users involved in Hurn and Barron’s38 study preferred oral communication to paper-based assessment (perhaps relating to other general fears among refugees around filling and signing forms). They also preferred to have direct instructions rather than a more flexible approach.

Another theme seen in the predominantly Afghan population of Majumder’s45 study was a preference for medication over talking therapies. This was attributed to the participants preferring to look forward, and seeing being positive as a better alternative to reliving traumatic experiences in their home country:

That doesn’t helps me . . . that makes me more hard because um the all the time I was talking about the past . . . so every time I went there . . . reminding me after I went home again . . . same depression and same problems.

Type of participant not given45

Language and culture were also commonly cited as barriers to effective engagement once services had been accessed. In some cases, service users reported trusting English-speaking facilitators; however, they felt better understood when they could communicate in their native language. 47 Facilitators mentioned that the use of an interpreter could make it more difficult for them to control sessions, as interpreters occasionally went beyond what was actually said. 38 This was reported as a particular challenge to overcome in ensuring that facilitators can effectively treat young people while making them feel as comfortable as possible.

The background of mental health service facilitators was another aspect that was discussed. 47 Some of the participants mentioned a lack of trust in Asian practitioners in particular, although the reason for this was not explored. In addition, some reported being more likely to open up about their issues with a male practitioner47 (although it was not stated whether it was male or female service users who felt this). This was attributed by the authors to the cultural attitudes of study participants, in which it may be important to protect females from stressors:

To S [young person], women need to be protected, women need to just see the soft side of things and don’t have to suffer, and if there is any burden of suffering, it is good for the man to carry this burden and not for a woman . . .

Carer47

King and Said39 reported on a service that was successful with unaccompanied asylum seekers in a group cognitive–behavioural therapy (CBT) setting:

Before I came to the group I felt very sad and worried, since coming here I have opened up and I feel relaxed.

Male, 17, Somalian39

Participants valued both the content of the sessions and the opportunity to meet peers in similar positions to themselves. In addition, they appreciated that the group was kept flexible to cater for their needs and that the group setting helped normalise the process:39

I come here and saw everyone that has problems just like me. Everyone is working together to help each other.

Male, 17, Somalian39

This was a seen as a successful programme for these asylum seekers, which saw good rates of repeat attendance, overcoming a significant obstacle to service provision. One further possibility for improving access to services, considered by Hurn and Barron38 was providing rewards for attendance at mental health appointments. One example given was an educational reward, as education is often highly regarded by refugees; in this case a family trip to the Yorkshire Dales was added as a fourth and more activity-based education session.

University students

Four studies included a focus on understanding the mental health care-seeking experiences of undergraduate students from ethnic minority backgrounds. 32,49,51,53 These four papers focused on the experiences of African Caribbean students in accessing mental health services,51 the mental health and help-seeking experiences of black British and South Asian British students at two universities,49 South Asian students with eating disorders53 and students of various ethnicities living with schizophrenia. 32

The main features of these studies are summarised in Table 6, below.

In three of the studies,32,51,53 interviewees reported a lack of knowledge and understanding of the relevant mental health issue, although this theme was more prominent in the studies of Cadge et al. 32 and Wales et al. ,53 which focused on specific mental health conditions. In contrast, the study51 focusing on experiences of African Caribbean students identified a lack of trust in the services to which the students had access. Misdiagnosis was raised as an issue, with some (services or professionals) missing the signs of the mental health problem. When interviewees recognised a mental health issue themselves, there was an indication that they may not seek help owing to underappreciating the severity or seriousness of the issue:

I just think [. . .] eating disorders they’re easily fixed so why go seek help if you can do it yourself?

Male, < 25 years53

A similar quotation was found in Cadge et al. ’s32 paper, which focused on schizophrenia:

It’s all well saying I’d probably seek help but I honestly don’t think I would . . . you think you’re strong enough to probably get over it yourself.

Keshini (pseudonym), Indian32

This illustrates that, for some problems, the perceived expectation that young people can just ‘get over it’ (implicitly, on their own) is itself a barrier to help-seeking and may stem from views within their communities. This may be particularly the case for male participants:

Where I am from, men need to be in control, we are head of the home. I’m the first boy and in my culture that’s a big deal.

Type of participant not given49

Indeed, the perceived need to deal with issues alone, combined with a lack of knowledge around conditions and lack of available support, may be linked with internal conflict between interviewees’ Western beliefs and those of their religion and community:

I think I’m quite Western in the way I think about this but I know there’s a spiritual aspect to these things too.

Type of participant not given49

A related theme that emerged through these papers was stigma, although this was not exclusive to university students (see later section on the stigma findings, Stigma as a barrier to accessing or seeking help, for more details). For example, the study by Sancho and Michael,51 which included African Caribbean students, found that students, particularly those identifying as male, felt that they have to conform to certain ideals, and that having a mental health issue would depart from this. More generally, having a mental health issue may be less commonly discussed in some ethnic minority groups

In my community . . . they’re like this doesn’t exist . . . it’s a white person thing.

Waqas (pseudonym), Pakistani32

For some, religious beliefs might either deter care-seeking or provide an additional source of support and advice. In the study exploring the experiences of African Caribbean students,51 religion appeared to add to the stigma of mental health issues. In contrast, in the study by Wales et al.,53 which included South Asian students with schizophrenia, it was highlighted that religion or the religious community and leaders might be the first point of access to mental health support (before accessing formal or professional support).

If ethnic minority students feel that they are misdiagnosed, or that health professionals and services miss signs of mental health issues and that they are on their own dealing with these issues, then it is clear that ethnic minority students will need as much information and help as possible to understand what services are available to them. Students in the Wales et al. 53 and Sancho and Michael51 studies also suggested that the promotion of available support services is inadequate. Students in both studies highlighted the importance of publicity, and of ensuring that campaigns reach ethnic minority students by placing leaflets and posters in areas around the university most frequently accessed by students from these communities. 49

Studies among people with specific mental health needs

There were 13 studies, published in 16 papers,32–34,38,40–42,44–48,52–55 about seeking or accessing care for specific mental health needs. These studies related to young people with PTSD or trauma (n = 3, already described as part of Refugees/asylum seekers), schizophrenia or psychosis (n = 3), risk/experiences of self-harm (n = 2), eating disorders (n = 3), substance abuse problems (n = 2) and OCD (n = 1).

Studies about accessing and engaging with specific interventions

Three of the identified studies35,43,52 investigated the experiences of young people accessing or receiving specific treatments or types of intervention for mental health problems. The studies were among young people or their families engaging with multisystemic therapy (MST),35 young people receiving CBT for mental health problems43 and a family-based talking therapy among African Caribbean young people. 52

Stigma as a barrier to accessing or seeking help

Seven studies, reported in 10 papers,32,33,38,40,44–48,50 focused on or yielded specific findings relating to social stigma as a barrier to care-seeking or accessing support for mental health problems (four publications by Majumder et al. 45–48 were from the same study). Social stigma could deter care-seeking in two ways: it could relate to anticipated stigma owing to the perceptions of others about the young person’s own problems, or to stigma and fears held by the young person about the services or places/hospitals where other people with mental health problems are being assessed and treated.

Table 8 shows the key characteristics and findings of the papers that yielded specific findings about social stigma.

Several studies highlighted stigma as a theme, and, across nearly all the included studies, misconceptions of what it means to have a mental illness were significant barriers to help-seeking, diagnosis and compliance with taking medication. These effects seem to be magnified when there was both community and self-based stigma.

Studies on access to other resources or support

Summary of main findings

This rapid scoping review identified 22 qualitative research studies (published from 2012 onward) on the experiences of young people from ethnic minority groups regarding access to or ongoing retention/engagement with mental health care and support. The review had a broad scope of inclusion (ethnic minority groups were broadly defined; participants could include relatives, service providers, commissioners and referrers as well as the young people themselves; and ‘mental health care and support’ could include specialist, third-sector and any other alternative provision or support). Given this broad remit, it is unclear whether 22 qualitative research studies is more or less research than might be expected to understand this important topic from the perspectives of young people, their parents and others.

Several priority topics related to young people’s access to mental health services within the UK are either not covered by the included literature or only briefly touched on in relation to one specific minority group. For example, the included studies did not investigate access issues in relation to transition from child to adult services, or focus on access to treatment for common mental health problems such as anxiety and depression.

A full commentary on potential gaps in the literature (and whether they are important gaps relative to people from ethnic minorities, service providers or policy-makers) is beyond the scope of this review. However, the studies that were identified provided detailed preliminary insights into the experiences of young people from various ethnic backgrounds in a variety of regions and cities accessing or trying to access a wide range of mental health-care support.

We found evidence that had been conducted:

• among university students (n = 4 studies32,49,51,53) and refugees/asylum seekers (n = 5 studies31,36–39,44–48) experiencing a variety of mental health problems, and from a range of ethnic backgrounds

• among those in ethnic minorities from specific cities or regions who were experiencing or needing care for particular mental health needs/conditions – schizophrenia or psychosis (n = 3 studies32,40,52), eating disorders (n = 3 studies27,41,53), PTSD/trauma (the five studies31,36–39,44–48 among refugees/asylum-seeking young people), self-harm (n = 2 studies30,34), OCD (n = 1 study42), and users of substance misuse services (n = 2 studies54,55)

• among those in some ethnic minorities from specific cities or regions who were receiving particular types of treatment or intervention (n = 1 study in young people or their families engaging with multi-systemic therapy,35 n = 1 study in young people receiving CBT for mental health problems,43 and n = 1 study in African Caribbean young people taking part in family-based talking therapy52)

• to look at the perceived impacts of access to nature in urban settings on mental well-being for young people from various ethnic groups (n = 1 study31).

Encouragingly, most of this research has been based on interviews or focus groups with the ethnic minority children or young people themselves. Only 341,50,54 of the 22 studies did not include some data from the children or young people whose mental health needs were of interest. Other studies combined data from interviews of the young people with interviews or focus groups with parents/carers or family members. The views and experiences of care professionals or care provider organisations were collected and analysed in only six studies,38,40,41,52–54 whereas the views or experiences of service commissioners were captured in only one study. 40

In contrast to describing the types of mental health needs, services or ethnic groups for which there is research evidence, it is harder to specify where there is no evidence, or not as much as one might expect or want. Fewer than one-third of the included studies were wholly (or mostly) conducted in a particular ethnic minority group;44–48,52,53,55 such studies might reveal distinctive barriers to accessing care related to family and community circumstances, or the cultural beliefs of the young people, families and communities from those specific ethnic minority backgrounds. Two studies51,54 analysed experiences from both black and South Asian ethnic backgrounds within the same study, but did not set out to distinguish any differences in experience that may have been associated with the different ethnicities. The majority of studies involved young people or their parents/carers from a much wider range of ethnic backgrounds within a particular city or region, sometimes also including white British young people in the sample. That, and the fact we have not formally synthesised study findings, means any generalisation of these findings to other places, services or to specific ethnic minorities would be highly uncertain.

There were relatively few studies in younger children (< 15 years old), or studies of access to services and support linked to schools. Anxiety and depression are the most common forms of mental ill health in children and adolescents. However, there were surprisingly few studies that explicitly focused on access to care and support for these more common mental health issues (except one study34 focusing on self-harm, and perhaps indirectly the study43 on accessing CBT and the two33,53 on eating disorders).

Nevertheless, the included studies do indicate a range of potential factors that influence access to and engagement with mental health care that may be relevant to young people from different ethnic minorities experiencing mental health difficulties. The factors highlighted by authors of some of the included studies were as follows:

• Lack of awareness and knowledge about some mental health issues/conditions, sometimes including underappreciation of the seriousness and misunderstanding of the causes of the conditions, both of which could deter care-seeking.

• Lack of trust in care professionals, potentially due to perceptions of services or professionals operating in a way that is not culturally sensitive and/or past experiences of feeling let down by services. Note that, among refugees or asylum seekers, this distrust had different root causes (such as fear of links to the justice/asylum system and language differences) and different manifestations (such as resistance to paper form-based assessment or therapy exercises).

• Lack of awareness/lack of information about available services and support for mental health difficulties.

• Social stigma – either self-perceived by the young person and/or embedded in and related to the services and institutions providing care.

• Culture-, community- and religion-specific reasons for either hiding/suppressing the admission of having mental health difficulties, or for seeking support from informal or alternative sources rather than mainstream mental health services.

• Differing expectations about mental resilience and levels of ease in talking about problems between different ethnic groups, and between boys/young men and girls/young women within particular ethnic groups.

Strengths

This rapid scoping review was conducted by an experienced team of reviewers according to a prespecified protocol and with input from researchers and clinicians with relevant clinical and care provision experience. Our searches were comprehensive, and were developed and conducted by an experienced information specialist (SR). The review team also systematically extracted relevant standard information from each study and independently assessed the quality of included studies using established criteria.

The majority of included studies were judged to be of good quality in terms of their methods and reporting, although nine met fewer than 10 out of the 13 ‘Wallace’28 study quality criteria. In addition, as far as possible, we have ensured that this report meets the relevant Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews. 56 Many of the studies had been published quite recently (see Figure 2), which means that they may be more applicable to current services and policies, although there is typically a time lag of 1 or 2 years between data collection and publication.

Limitations

For systematic reviews, there are two main sources of limitations: those related to the review methods, and those related to the studies ultimately found and included.

Implications for future research

The quality and usefulness of future qualitative research and other studies in this area could be improved by the following:

• Purposively sampling young people and/or their parents from particular ethnic minority groups to be able to identify recurring experiences, issues or factors that explain poor access to care, poor engagement with services, or poor cultural adaptation or racist practices within services that might be distinctive to particular ethnic minority groups, or experienced in a different way by them. Purposively sampling in qualitative studies to also gain a diversity of experiences from enough boys/men and girls/women to understand gender differences in how they experience mental health problems and services.

• Conducting larger, qualitative studies with purposive sampling that enable separate and comparative analysis of the experiences of those in different minority ethnic groups would also be useful to identify factors that are specific to particular groups. Larger samples might also allow more valid and trustworthy insights about how ethnic identity and cultural beliefs affect boys/young men, or girls/young women differently (or those with other gender identities), for example in relation to acknowledging, talking about and seeking care for mental health problems, or understanding practitioner and service accessibility.

• Including data from multiple stakeholders’ perspectives – importantly, from young people and their parents/carers, but also from community members and service providers, service commissioners and other professionals. In addition, studies would ideally cover multiple regions, including rural areas, with related variations in local population need, service configurations and accessibility.

• Focusing on the different routes to mental health care/support followed by those from ethnic minority groups – not exclusively on the experiences of those who manage to access specific services. There was a particular lack of qualitative evidence from those professionals, whether in the NHS or in schools, who might identify and refer children and young people experiencing mental health difficulties to other services.

• Focusing on how children and young people from ethnic minority backgrounds experience being supported by multiple teams or services, for example when there are complex needs and factors involved (mental health and physical health services, mental health and social care).

• Focusing on how the (lack of) ethnic diversity in the mental health workforce shapes the experiences of children and young people seeking support for their mental health, and their willingness to engage with and trust those providing such support.

• Better reporting, especially in terms of describing the methods of data collection adequately. For example, future studies need to make explicit the theoretical or ideological/cultural (including ethnic) perspective of the authors, showing greater consideration to any limitations of the methods or data that may have affected the results, and more carefully basing any claims to generalisability on the strength and plausibility of the data, and the integrity of any themes and theoretical insights produced. Also, the demographic (including ethnic identity) characteristics of the originator of all quotations could be more consistently reported in qualitative studies.

More nuanced and context-sensitive insights may also be yielded by conducting a more formal evidence synthesis of selected groups of qualitative studies summarised in this scoping review. For example, synthesising qualitative evidence from the four studies about university students, or the five studies about refugees/asylum seekers might yield more detailed and context-sensitive insights for improving access to mental health support and services for young people in those situations and settings. Such formal evidence synthesis should consider using an explicit theory or logic model for understanding access to health-care services.

These are just preliminary suggestions, based on the apparent evidence gaps and shortcomings in study quality that we have identified. Stronger recommendations for commissioners of research would require a more collaborative, comprehensive and inclusive engagement process with a wider range of stakeholders than was possible within our short project. Such a research priority-setting exercise could compare the ‘gaps’ in evidence about ethnic groups, mental health needs or services for which there is no or little evidence (as identified by our review) with those mental health needs, contemporary service developments or policy changes that are of particular importance to ethnic minority children, young people, their parents/carers and other stakeholders.

A recent research priority-setting exercise by the McPin Foundation (with guidance from the James Lind Alliance) was conducted in 2017 about interventions and services for children and young people’s mental health,64 and it echoes some of the findings from our review. The McPin Foundation’s consultation with young people produced a wide range of mental health research priorities, including priority 11 – ‘How can the number of effective culturally appropriate approaches available in children and young people’s mental health services be increased, particularly for ethnic minority groups?’. 64 As well as being an important stand-alone question, the young people consulted wanted this question to be a consideration within every one of the top 10 priorities identified.

Contributions of authors

Helen Coelho (https://orcid.org/0000-0002-4799-4300) (Research Fellow) led the drafting of the review protocol and project planning and management (until the end of July 2021). She contributed to screening search records; researching and drafting the report’s background section; crafting the review findings; and drafting, editing and finalising the final publication.

Anna Price (https://orcid.org/0000-0001-9147-1876) (Research Fellow) contributed to the drafting of the review protocol and project planning and management (until the end of September 2021); screening of search records and full-text publications; advising and supporting Fraizer Kiff and Laura Trigg in assessing qualitative research studies; crafting of the review findings; and drafting, editing and agreeing the final publication.

Fraizer Kiff (https://orcid.org/0000-0002-6008-3907) (Graduate Research Assistant) contributed to screening of full-text publications; data extraction; study quality assessment; drafting of the review findings; and drafting, editing and finalising the final publication.

Laura Trigg (https://orcid.org/0000-0002-8447-2616) (Graduate Research Assistant) contributed to screening of full-text publications; data extraction; study quality assessment; drafting of the review findings; and drafting, editing and finalising the final publication.

Sophie Robinson (https://orcid.org/0000-0003-0463-875X) (Information Specialist) led the design and conduct of the searches; managed the EndNote [Clarivate Analytics (formerly Thomson Reuters), Philadelphia, PA, USA] databases; and contributed to the drafting of the review protocol, screening of search records, drafting of the review methods, and editing and finalising the final publication.

Jo Thompson Coon (https://orcid.org/0000-0002-5161-0234) (Professor of Evidence Synthesis and Health Policy) contributed to the drafting and finalising of the review protocol, project planning and management, screening of search records, crafting of the review methods and findings, and editing and finalising the final publication.

Rob Anderson (https://orcid.org/0000-0002-3523-8559) (Professor of Health Services and Implementation Research) led and provided academic oversight of the project; co-ordinated the recruitment and engagement with clinical and policy stakeholders; led the drafting of the discussion, conclusions, scientific summary, abstract and Plain English summary; and contributed to editing and finalising the final publication.

Data-sharing statement

All studies and data used to produce this report is in the public domain. Data (such as EndNote search files, data extraction tables or search strategies) can be obtained from the corresponding author.

Disclaimers

This report presents independent research funded by the National Institute for Health and Care Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, the HSDR programme or the Department of Health and Social Care. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, the HSDR programme or the Department of Health and Social Care.

MEDLINE and MEDLINE in Process (Ovid): 867 hits

Date searched: 23 June 2021.

Search strategies for the other databases are available on request.