Understanding the inclusion and participation of adults from Black African Diaspora Communities (BAFDC) in health and care research in the UK:a realist review protocol

Introduction: People from Black African Diaspora Communities (BAFDC) experience poorer health outcomes, have many long-term conditions and are persistently under-represented in health and care research. There is limited focus on programmes, or interventions that support inclusion and participation of people from BAFDC in research. Through coproduction, this realist review seeks to provide a programme theory explaining what context and mechanisms may be required, to produce outcomes that facilitate inclusion and participation for people from BAFDC in health and care research, in the UK.Methods and analysis: A group of people from BAFDC with lived and professional experience, representing all levels of the health and care research system, will coproduce a realist review with a team of African-Caribbean, white British and white British of Polish origin health and care researchers. They will follow Pawson’s five steps: (1) shaping the scope of the review; (2) searching for evidence; (3) document selection and appraisal; (4) data extraction and (5) data synthesis. The coproduction group will help to map the current landscape, identifying key issues that may inhibit or facilitate inclusion. Data will be extracted, analysed and synthesised following realist logic analysis, identifying and explaining how context and mechanisms are conceptualised in the literature and the types of contextual factors that exist and impact on inclusion and participation. Findings will be reported in accordance with Realist and Meta-narrative Evidence Synthesis Evolving Standards .Ethics and dissemination: The coproduction group will agree an ethical approach considering accountability, responsibility and power dynamics, by establishing a terms of reference, taking a reflexive approach and coproducing an ethical framework. Findings will be disseminated to BAFDC and the research community through arts-based methods, peer-reviewed publications and conference presentations, agreeing a coproduced strategy for dissemination. Ethical review is not required.PROSPERO registration number: CRD42024517124

Ethnicity and impact on the receipt of Cognitive Behavioural Therapy in people with psychosis or bipolar disorder:an English cohort study

Objectives: 1) To explore the role of ethnicity in receiving Cognitive Behavioural Therapy (CBT) for people with psychosis or bipolar disorder whilst adjusting for differences in risk profiles and symptom severity. 2) To assess whether context of treatment (inpatient versus community) impacts on the relationship between ethnicity and access to CBT.Design: Cohort study of case-register data from one catchment area (January 2007 to July 2017).Setting: A large secondary care provider serving an ethnically-diverse population in London.Participants: Data extracted for 30,497 records of people who had diagnoses of bipolar disorder (ICD Code F30-1) or psychosis (F20-F29 excluding F21). Exclusion criteria were: <15 years old, missing data, and not self-defining as belonging to one of the larger ethnic groups. The sample (N=20010) comprised the following ethnic groups: White British, n=10393; Black Caribbean, n=5481, Black African, n=2817; Irish, n= 570; and ‘South Asian’people (consisting of Indian, Pakistani, and Bangladeshi people) n=749.Outcome Assessments: Odds ratios for receipt of CBT (single session or full course) as determined via multivariable logistic regression analyses.Results: In models adjusted for risk and severity variables, in comparison to White British people; Black African people were less likely to receive a single session of CBT (OR 0.73, CI 0.66 to 0.82, p<.001); Black Caribbean people were less likely to receive a minimum of 16-sessions of CBT (OR 0.83, CI 0.71 to 0.98, p=.03); Black African and Black Caribbean people were significantly less likely to receive CBT whilst inpatients (respectively OR 0.76, CI 0.65 to 0.89, p=.001; OR 0.83, CI 0.73 to 0.94, p=.003).Conclusions: This study highlights disparity in receipt of CBT from a large provider of secondary care in London for Black African and Caribbean people and that the context of therapy (inpatient versus community settings) has a relationship with disparity in access to treatment

Trust and distrust: Identifying recruitment targets for ethnic minority blood donors

Background: We explore the role of trust, distrust, and the prevailing socio-political context to better understand why people from ethnic minority communities are less likely to be blood donors compared to people from White communities. Recruiting more ethnic minority donors will enhance representativeness, reduce inequality, and help meet the clinical need to increase the proportion of blood with Ro Kell antigen to treat Sickle Cell Disease (SCD). Study design and methods: A 2 (donor-status: current donor; non-donors) by 4 (ethnicity: People from Asian, Black, Mixed and White ethnic backgrounds) quasi-experiment (N=981) was conducted to examine perceptions of trust/distrust and their influence on willingness to donate blood, within the socio-political context of the Windrush scandal and Brexit. Results: We identified five domains of trust (‘National Health Service [NHS] and staff,’ ‘NHS Blood and Transplant,’ ‘outgroups,’ ‘individuals’ and ‘politics’), and a single domain of conditional distrust domain. Trust across all the domains was lower, and ‘conditional distrust’ higher for ethnic minorities. Trust in ‘individuals’ and ‘NHSBT’ predicted willingness to donate in non-donors from ethnic minorities and White non-donors, respectively. Concerns about the Windrush scandal were related to lower political trust. Viewing Brexit as ‘positive for the UK’ was related to lower trust across domains and reduced willingness to donate in White non-donors through its influence on reduced trust in NHSBT. Conclusion: Distinct domains of trust and distrust are identified, and targeting ‘trust in others’ through conditional cooperation is recommended as a strategy to increase donor numbers from ethnic minority communities

Culturally-adapted Family Intervention (CaFI) for African-Caribbeans diagnosed with schizophrenia and their families : a feasibility study protocol of implementation and acceptability

Background African-Caribbeans in the UK have the highest schizophrenia incidence and greatest inequity in access to mental health services of all ethnic groups. The National Institute for Health and Care Excellence (NICE) highlights this crisis in care and urgent need to improve evidence-based mental healthcare, experiences of services and outcomes for this group. Family intervention (FI) is clinically and cost-effective for the management of schizophrenia but it is rarely offered. Evidence for FI with minority ethnic groups generally, and African-Caribbeans in particular, is lacking. This study aims to test the feasibility and acceptability of delivering Culturally-adapted Family Intervention (CaFI) to African-Caribbean service users diagnosed with schizophrenia. Methods/Design This is a feasibility cohort design study. Over a 12-month intervention period, 30 service users and their families, recruited from hospital and community settings, will receive ten one-hourly sessions of CaFI. Where biological families are absent, access to the intervention will be optimised through ‘family support members’; trusted individuals nominated by service users or study volunteers. We shall collect data on eligibility, uptake, retention and attrition and assess the utility and feasibility of collecting various outcome measures including readmission, service engagement, working alliance, clinical symptoms and functioning, perceived criticism, psychosis knowledge, familial stress and economic costs. Measures will be collected at baseline, post-intervention and at 3-month follow-up using validated questionnaires and standardised interviews. Admission rates and change in care management will be rated by independent case note examination. Variability in the measures will inform sample size estimates for a future trial. Independent raters will assess fidelity to the intervention in 10 % of sessions. Feedback at the end of each session along with thematically-analysed qualitative interviews will examine CaFI’s acceptability to service users, families and healthcare professionals. Discussion This innovative response to inequalities in mental healthcare experienced by African-Caribbeans diagnosed with schizophrenia might improve engagement in services, access to evidence-based interventions and clinical outcomes. Successful implementation of CaFI in this group could pave the way for better engagement and provision across marginalised groups and therefore has potentially important implications for commissioning and service delivery in ethnically diverse populations. This study will demonstrate whether the approach is feasible and acceptable and can be implemented with fidelity in different settings

Exploring Dementia Care Systems Across the African Caribbean Diaspora: A Scoping Review and Consultation Exercise.

BACKGROUND AND OBJECTIVES:Understanding the influences of marginalized cultural and social identities as experienced by the African Caribbean diaspora within the context of dementia care is essential to minimize the gaps in current practice and policy in the health care setting. This study explores the impact of marginalized identities upon the meaning-making process, access to services and experience of care provisions through a scoping review and consultancy exercises with key stakeholders. RESEARCH DESIGN:Fourteen databases were searched using key terms. Primary studies in English, any year, study design, and country of origin were eligible. Titles, abstracts, and full texts were screened for inclusion and data were extracted in stages. Thematic analysis was performed and the findings were discussed in a series of consultation meetings with people with dementia, carers, and health care professionals in Manchester (United Kingdom) and Jamaica. RESULTS:The scoping review retrieved n = 1,989 research articles. Nineteen were included, most were qualitative (n = 14), 3 quantitative, and 2 mixed-method. The findings revealed limited insight into cultural and multiple individual identities in explaining conceptualization and service access. Consultation meetings confirmed these findings and highlighted differences in health care services and systems in the United Kingdom and Jamaica. DISCUSSION AND IMPLICATIONS:This study suggests there is a complex interaction of sociocultural processes that marginalize African Caribbean persons in and across various national settings within the context of dementia care. The study highlights the importance of acknowledging and addressing how prevalent racialized- and class-based divides and related marginalized social locations are reflected in inequities in access to and use of dementia services

“They Are Not Hard-to-Reach Clients. We Have Just Got Hard-to-Reach Services.” Staff Views of Digital Health Tools in Specialist Mental Health Services.

Background: Digital health products designed to help people with severe mental health problems appear to be feasible, acceptable, and efficacious. The challenge facing the digital mental health field is implementing digital tools in routine service delivery. To date, there has been a paucity of qualitative research exploring staff views of digital health solutions in the context of mental healthcare. Engaging and involving frontline staff in the design and rollout of new technology to improve utilization is imperative for successful uptake and adoption of digital tools. The aim of the current study is to explore frontline staff views regarding the utility and appropriateness of using digital tools in the healthcare pathway for people accessing specialist secondary care mental health services.Method: Qualitative study using framework analysis was used with 48 mental health staff working in early intervention for psychosis services. Six groups comprising 5–10 early intervention service staff members in each group were conducted across the Northwest of England. Robust measures were used to develop a stable framework, including member checking, triangulation, and consensus meetings.Results: Three themes were identified a priori: i) perceived barriers to adopting smartphone apps for early psychosis; ii) acceptability of digital health tools for early psychosis patients; and iii) data security, safety, and risk. Alongside exploring the a priori topics, one theme was generated a posteriori: iv) relationships.Conclusions: Staff working in specialist early intervention for psychosis services found digital tools on the whole acceptable in mental health service provision, but raised a number of concerns that will likely affect implementation of such systems into routine service delivery and practice. Thirteen recommendations are made in this paper as a result of the themes generated in these data. Implementing of digital systems needs to be simple and uncomplicated and improve clinical workflows for staff rather than hinder and increase clinical workflows. Furthermore, organizational support with a clear plan for implementing technological innovations is required for successful adoption of digital systems. Consideration of staff views around digital systems is important if successful adoption and implementation of such systems are to occur.Clinical Trial Registration: http://www.isrctn.com, identifier ISRCTN34966555

Improving mental healthcare access and experience for people from minority ethnic groups : an England-wide multisite experience-based codesign (EBCD) study

Background Long-standing ethnic inequalities in access and mental healthcare were worsened by the COVID-19 pandemic. Objectives Stakeholders coproduced local and national implementation plans to improve mental healthcare for people from minority ethnic groups. Methods Experience-based codesign conducted in four areas covered by National Health Service (NHS) mental health trusts: Coventry and Warwickshire, Greater Manchester, East London and Sheffield. Data were analysed using an interpretivist–constructivist approach, seeking validation from participants on their priority actions and implementation plans. Service users (n=29), carers (n=9) and health professionals (n=33) took part in interviews; focus groups (service users, n=15; carers, n=8; health professionals, n=24); and codesign workshops (service users, n=15; carers, n=5; health professionals, n=21) from July 2021 to July 2022. Findings Each study site identified 2–3 local priority actions. Three were consistent across areas: (1) reaching out to communities and collaborating with third sector organisations; (2) diversifying the mental healthcare offer to provide culturally appropriate therapeutic approaches and (3) enabling open discussions about ethnicity, culture and racism. National priority actions included: (1) co-ordination of a national hub to bring about system level change and (2) recognition of the centrality of service users and communities in the design and provision of services. Conclusions Stakeholder-led implementation plans highlight that substantial change is needed to increase equity in mental healthcare in England

The impact of reduced routine community mental healthcare on people from minority ethnic groups during the COVID-19 pandemic : qualitative study of stakeholder perspectives

Background: Enduring ethnic inequalities exist in mental healthcare. The COVID-19 pandemic has widened these. Aims: To explore stakeholder perspectives on how the COVID-19 pandemic has increased ethnic inequalities in mental healthcare. Method: A qualitative interview study of four areas in England with 34 patients, 15 carers and 39 mental health professionals from National Health Service (NHS) and community organisations (July 2021 to July 2022). Framework analysis was used to develop a logic model of inter-relationships between pre-pandemic barriers and COVID-19 impacts. Results: Impacts were largely similar across sites, with some small variations (e.g. positive service impacts of higher ethnic diversity in area 2). Pre-pandemic barriers at individual level included mistrust and thus avoidance of services and at a service level included the dominance of a monocultural model, leading to poor communication, disengagement and alienation. During the pandemic remote service delivery, closure of community organisations and media scapegoating exacerbated existing barriers by worsening alienation and communication barriers, fuelling prejudice and division, and increasing mistrust in services. Some minority ethnic patients reported positive developments, experiencing empowerment through self-determination and creative activities. Conclusions: During the COVID-19 pandemic some patients showed resilience and developed adaptations that could be nurtured by services. However, there has been a reduction in the availability of group-specific NHS and third-sector services in the community, exacerbating pre-existing barriers. As these developments are likely to have long-term consequences for minority ethnic groups’ engagement with mental healthcare, they need to be addressed as a priority by the NHS and its partners