Introduction
In March 2020, the COVID-19 pandemic was declared a worldwide emergency by the World Health Organisation and caused multiple unprecedented changes to society. The UK Prime Minister at the time, Boris Johnson, ordered a national lockdown instructing the public to “Stay at home, Protect the NHS and Save lives” [
1,
2]. The public were not allowed to leave their homes unless it was thought essential [
3]. Since then, the COVID-19 pandemic has caused multiple lockdowns, which have resulted in restricted delivery of UK healthcare services and made access more difficult [
3,
4]. Many individuals, with and without pre-existing mental health conditions, experienced a decline in their mental health [
5] leading to soaring demands for NHS support [
6]. Poorer mental health outcomes were linked to COVID-19-related factors such as financial difficulties, infection and mortality rates, and home-schooling [
7,
8].
Even prior to the COVID-19 pandemic, mental health services were already facing significant challenges. These included bed shortages, high service demands, frontline workers struggling with burnout, and staff shortages [
9]. These difficulties were further compounded by inadequate resources and a growing population in need of mental health support. Globally, mental health services have been recognised as of poorer quality than physical health services with greater inequality for ethnic minority communities, asylum seekers, refugees, migrants and those who face racial discrimination [
10,
11]. The arrival of COVID-19 exacerbated existing problems, leading to a more severe situation where service users may not have received the necessary support when needed most [
12‐
15].
For many UK individuals from ethnic minority communities, lack of timely support has been their reality even prior to the pandemic [
16]. The health inequalities experienced by ethnic minority communities are well documented and extend back decades [
16,
17] Historically, the mental health burdens specific to minoritised individuals have been associated with socio-economic factors such as housing conditions [
18]; stigma-related cultural influences [
19‐
21]; long impacting trauma born from long term historical events such as genocide, slavery and forced migration [
22,
23]; and, racism and discrimination [
24]. Alongside this, many minoritised people do not access services due to internalised stigma about mental health services [
25] and others are unaware of the help available [
20]. Among those who do encounter mental health services, minoritised people experience poorer outcomes such as higher rates of detention, higher use of restrictive practices, poorer care, and reduced long-term recovery rates [
21,
25,
26]. Meanwhile, it is evident that COVID-19 has had a disproportionately negative impact on the mental health of people from ethnic minority communities [
15,
27‐
29].
Aside from the historical and structural burdens described above, some ethnic minority communities also have a higher risk of contracting COVID-19, higher rates of hospital admissions, a greater need for intensive care, and increased mortality [
30‐
33]. Researchers [
33] have highlighted 6 key pathways which have potentially led to the unequal impact of COVID-19 on ethnic minority communities through differentials in: virus exposure, vulnerability to infection, health consequences, social consequences, effect of pandemic control measures, and adverse consequences of control measures. These pathways have been corroborated by others [
24,
33‐
35]. We now have an improved understanding of the anxiety and fear associated with COVID-19, and its impact on pre-existing mental health difficulties and access to services [
24]. As we consider the longer-term impacts of COVID-19, NHS mental health services need to do more work to understand the specific needs of ethnic minority communities and provide consistent, timely and equitable access.
This paper describes the process and findings of a co-produced service evaluation to explore ethnic minority community service users’ experiences of accessing a large regional specialist mental health service during the COVID-19 pandemic. It also describes service users’ recommendations for future service development to support equity of access and mental health outcomes for ethnic minority communities. The co-production team was composed of experts-by-experience, public members, health professionals and researchers from different ethnic minority community backgrounds. The team followed guidance on the principles of co-production by the National Institute for Health and Care Research (NIHR) [
36]. This included remunerating experts-by-experience and public members for their involvement, joint decision making and allowing for extra time. The team met monthly via Zoom from January 2021 to May 2022 to discuss study design and conduct. An evaluation of the experiences of ethnic minorities with a learning disability was also planned using proxy methods. However, parents and carers indicated that additional COVID-19 related stresses hindered them from participating and so this aspect was abandoned.
Methods
Design
The aim of this study was to explore ethnic minority community service users’ experiences of mental health services during the COVID-19 pandemic using co-production. A mix of creative workshops and semi-structured qualitative interviews were used for data collection; the frequency, duration, structure, and content of these sessions was decided by the co-production team. The interview guide for the qualitative interviews was informed by information collected through the creative workshops (delivered online, in three parts and using a focus-group style) exploring individual service user journeys. At the point of recruitment to the project, service users were given the option of attending the creative workshops, individual interviews, or both.
This service evaluation was registered with the Sussex Partnership NHS Foundation Trust (SPFT) Quality Improvement Team on 12/04/21 and approved by SPFT Information Governance on 22.07.21 (ref DPIA232SPFT).
Participant recruitment
Participants were service users recruited from SPFT, a large specialist mental health and learning disabilities service. In 2021, national Census data indicated SPFT served 1.7 million residents in Sussex with 9% from ethnic minority community groups [
37]. Recruitment was conducted between October 2021 and January 2022 with the following inclusion criteria: aged 16 or over; from a self-ascribed ethnic minority community background; and, had accessed SPFT services since March 2020. To maximise inclusivity, non-English speaking service users were encouraged to participate, and interpreters were available on request.
Recruitment materials (posters and leaflets) were designed in consultation with ethnic minority community people with mental health problems. These included illustrations of people from different ethnic backgrounds (see Supplementary Materials 1 for the poster; members of the co-production team used personal and community knowledge to identify the best places to display the posters). The materials were used to advertise the project through social media (Facebook and Twitter). SPFT lead mental health practitioners, who had established relationships with service users from ethnic minority communities, were assisted by the co-production team to identify eligible people on their caseload. Practitioners then contacted potential participants directly and shared the recruitment materials. A member of the co-production team also attended an ethnic minority community support group to advertise the study.
Volunteers were invited to an initial one-to-one telephone call with a member of the co-production team who discussed project details, confidentiality, anonymity and the right to withdraw from the project at any time without any effect on their care by SPFT. An opportunity was given to ask questions and then informed consent was gained and demographic information was collected (e.g. age, sex, employment status, service access, and length of time using the service). All service users and public members taking part in any aspect of the project were remunerated for their time. This was either by following the Trust’s Service User & Carer Payment Policy for involvement work guidance, or by receiving £15 for each creative workshop or qualitative interview attended.
Data collection
The topic guide for the qualitative interviews (shown in Supplementary Materials 2) was informed by findings from the creative workshops. The creative workshops were collaboratively designed by the co-production team’s experts-by experience, the peer researcher (KK) and healthcare professionals. They were delivered by a healthcare professional from the co-production team and mental health peer facilitators recruited just for the workshop (i.e. they did not attend co-production meetings). During the creative workshops, participants were invited to illustrate their experiences of using SPFT services using different mediums e.g. art, poetry and/or writing. The facilitators helped participants start and develop their creative pieces during the sessions. Pieces were completed outside of the sessions. During the sessions, participants described how they felt about the process and what their creative pieces represented. For those consenting, creative pieces were collated and published in a book for the participants to own. Workshops took place in November and December 2021. Thirteen people took part in the workshops in groups of four/five with each delivered over three consecutive weeks.
Semi-structured one-to-one interviews, conducted by KK, were used for exploring the lived experiences of service users accessing SPFT mental health services during the COVID-19 pandemic. This method allows for new emerging themes to arise using open-ended questions [
38].
Data analysis
With informed consent, interviews were audio recorded, transcribed and then thematically analysed using Braun & Clarke’s methods [
39] by KK. Identifying information such as names and locations were omitted and pseudonyms were used instead. Transcript coding was guided by set
cycles as defined by Saldaña (2009) [
40]. The first cycle in the coding process refers to the initial coding stage, which involves constant rereading in a descriptive manner where language is identified at a textual level. The second cycle involves analytically indexing codes which were appropriate to the study’s questions, aims, and objectives. Codes were then prioritised and synthesised which culminated in the generation of themes. Data saturation was achieved when no new themes emerged from the data. Themes were checked and confirmed by PA (a public member of the co-production team) and then discussed with the co-production group. These were later confirmed with participants at a celebration and dissemination event in May 2022. Their suggestions were incorporated into the final set of recommendations.
Discussion
It is clear that SPFT service delivery was seriously affected by the COVID-19 restrictions. One service user recalled how it took two lockdowns to be seen by an SPFT mental health service. However, issues such as these were not unique to SPFT [
45] and were driven by hospital staff absences mirrored nationally. In January 2022, 40% (28,000) of UK staff were reportedly off work due to COVID-19 [
46,
47]. This is consistent with the SPFT Annual report (2021) [
48] which highlighted more sicknesses and periods of self-isolation among staff during lockdown periods.
While many face-to-face therapy sessions were halted, SPFT quickly delivered therapy sessions through online platforms. Service users generally viewed the online therapy received as positive (other delivery modalities were not mentioned). This contradicts existing literature which regarded remotely delivered therapy as a negative experience [
49,
50]. Nevertheless, other findings have shown that online interventions are effective and beneficial to mental health [
51,
52]. Service users recommended this approach be used more frequently noting its inclusivity for those physically unable to travel or with anxiety disorders. For those with challenges juggling therapy with work commitments, an online solution is a helpful option which can potentially improve engagement [
53,
54]. However, existing literature has shown that for some, home is not a “safe space” and therefore receiving therapy in their home is not feasible [
55,
56], thus possibly leading to further disadvantage in an already vulnerable group. Offering a choice between remote and face-to-face therapy, as a blended approach, would be beneficial to those unable to attend in-person or unable to talk privately in their home [
57].
Consistent with findings in the literature [
58], socio-demographic factors such as education were found to impact service-user access to mental health services. Therefore, service users have recommended raising awareness among those from different socio-demographic groups (education, social class, and occupation).
Many service users reported facing stigma about their mental health difficulties and felt unable to disclose associated struggles to their families. This is consistent with existing literature which identified that many communities try to hide diagnoses [
59,
60]. Furthermore, those who seek help may not be receiving social support from home which may lead to poorer mental health outcomes [
61]. It is important for mental health services to better understand the existing barriers and social contexts within communities, to act upon this, and find ways to reach out to groups and individuals [
62,
63].
To facilitate reaching out to community groups and networks, cultural community ambassadors and/or mental health champions could be recruited more [
64,
65]. These are individuals from ethnic minority community groups who may or may not have used mental health services. In an advocatory role, they can provide informal mental health support and help community members to access services. These have been shown to improve levels of trust between potential service users and services through their understanding of culture and language [
64,
66].
Peer support was a need and want for our service users. However, many discussed the perceived lack of commonalities they shared in existing peer groups due to being the only ethnic minority present. Studies have highlighted the discomfort many may feel in social settings when group members are predominantly (or otherwise solely) of White ethnicity [
67]. Drawing on the understanding of the impact of peer support and its potential positive effects on mental health outcomes [
61,
68], it is recommended that consideration be given to the set-up of peer groups in ethnic minority communities led by mental health champions or supporting peers from an ethnic minority background.
In terms of language, service users who were Kurdish, Arabic, and Bangladeshi encountered difficulties when interacting with interpreters used by SPFT. This was mainly due to differences in dialects and accents and feeling misunderstood which is consistent with other research findings [
69]. Researchers suggest that this could have serious consequences as interpreted information is used to decide treatments [
70]. It is therefore recommended that the interpreter’s dialect and specific language should match the service user’s whenever possible [
71].
Service users expressed feeling overwhelmed at times by the information provided by health care practitioners when they are unwell. This can pose as a barrier to health improvement as the ability to retain and absorb information can be limited [
72]. Therefore, it is recommended that when providing information, health professionals should be guided by the service user in terms of pace, timing and delivery.
Service users described experiencing trauma because of their culture or ethnicity either as an individual or as part of an ethnic minority community group. For instance, childhood bullying and racial discrimination were seen by a few as having long-lasting negative effects into adulthood. This is supported in the literature which discusses socioemotional and wellbeing difficulties in adulthood following childhood bullying [
44,
73‐
75]. It was felt that the impacts of these experiences were not well recognised by health practitioners. In general, service users recommended practitioners receive more training in cultural awareness and culturally adapted therapies. This is consistent with previous studies highlighting the need for culturally sensitive, competent, and compassionate care [
20,
64,
75,
76]. Recognising this, one London-based NHS trust is already offering a “Traumas of Racism” course [
77] in collaboration with their Recovery College [
78]. This may help improve service provider’s understanding of how deeply rooted the impacts can be. Enhanced knowledge and skills around different cultural contexts not only lead to better therapeutic relationships, linking to improved health outcomes [
64], but may also help healthcare professionals feel better equipped to deal with emotionally difficult situations [
79].
Finally, some felt that there should be more mental health awareness and support offered through schools. This aligns with the literature which indicates that children and young people from ethnic minority communities are at higher risk of experiencing trauma compared to their peers, but are least likely to access mental health care [
80]. The school setting, therefore, would be a convenient location to provide much needed support. Encouragingly in spring 2022, under the NHS Long Term Plan (2019) [
81], there were 287 Mental Health Support Teams (including SPFT) operating in over 4,700 schools and colleges in England [
82]. Future assessments of the programme’s outcomes and impact should take these disparities into account. For instance, a measure of success should be an increase in numbers of children and young people from ethnic minority communities accessing their services. Futher more, patterns of service use from different community groups should be in line with UK population figures. These could be seen as positive steps towards reducing mental health inequalities for these groups with potential impacts into adulthood.
Limitations
The purpose of this service evaluation was to work together with service users, SPFT staff, and stakeholders to design a project to explore ethnic minority community service users’ experiences. As this was a qualitative project without random selection or stratification, we cannot claim to have included a random or representative sample of participants. We therefore cannot generalise our findings beyond SPFT services. Despite this, the service user narratives may be helpful for gaining an understanding of some experiences and planning other services.
Recommendations for the future
Overall, the findings from this service evaluation led to seven key recommendations for SPFT which are summarised in Table
3. Due to the commonalities among specialist mental health services, these recommendations are likely to be applicable to other similarly organised community health services.
Table 3
Service users’ recommendations for SPFT
1. Increase awareness of SPFT mental health services, particularly in those from lower socio-economic groups (education, social class and occupation of the individual). |
2. Increase the number of cultural community ambassadors/mental health champions and supporting peers from different ethnic minority groups within the Trust. |
3. Increase availability of online mental health support as an alternative method to face-to-face sessions. |
4. Cultural training for mental health staff especially to improve understanding of cultural traumas faced by some ethnic minority communities across the life course. |
5. Work with interpreter providers to match more closely the language and dialect of interpreters with the service user they are supporting. |
6. Training staff around information delivery and sensitivity preventing emotional overload and distress. |
7. SPFT to have more presence in schools to help children with their mental health. |
Acknowledgements
In addition to the authors, the co-production team included Elaine Colomberg, Hana Hamaz, Psychology Placement Volunteers, Experts-by-Experience, SPFT staff, and public members. Many thanks go to all the service users, peer facilitators, and ethnic minority community group members who also contributed to this service evaluation by co-designing the project, co-designing or co-delivering the creative workshops, and/or sharing their experiences. We are also very grateful for all the clinicians and community organisations who generously gave their time to support the project.
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