Title: Co-production and evaluation of an e-learning resource to improve knowledge about schizophrenia and engagement with services in African Caribbean families
Funder: Department of Health and Social Care

Abstract: In the UK, African Caribbeans relative risk of schizophrenia in is 9.1 (IRR 6.6-12.6)2 9. In Manchester, African Caribbeans account for less than 2% of the population but 16.5% of in-patents. They access care later in their illness, presenting with more severe symptoms. Community-level misinformation and negative, stigmatising attitudes to mental illness are powerful barriers to help-seeking10 11. Untreated illness exacerbates family tensions and worsens perceptions of the burden of care12. Escalating family hostility, often resulting in police involvement, increases patients risk of estrangement from their families, relapse and social isolation6. Improving families attitudes and knowledge about schizophrenia positively affects carers perceptions and family tension13 14. However, these data relate to White families. There is little/no evidence about family educational interventions in ethnic minorities in the UK2. Aims We aim to co-produce, with African Caribbeans, a culturally-appropriate e-learning resource to improve attitudes and knowledge about schizophrenia and engagement with services in this high-risk group. We shall assess acceptability, resource-use monitoring methods and outcome measures and pilot data collection methods for outcomes relevant for a future RCT. Research questions (1) Can an e-learning resource (co-produced with African Caribbean community members) improve attitudes and knowledge in families of African Caribbeans with schizophrenia? (2) Can this e-learning resource positively impact engagement and perceived experiences of schizophrenia services? (3) Will the resource be acceptable to the families of African Caribbean people with schizophrenia? Plan of investigation This is a mixed-methods study in four phases using MRC s Complex Interventions Framework 15. Phase 1 There is little information about psycho-education in African Caribbeans. We will undertake a realist literature review16 to inform focus groups and our intervention. Phase 2 To identify culturally-salient issues for resource-development, we will conduct 3 focus groups with African Caribbean stakeholders: ex-service users, families, and community members (6-10 in each group, 18-30 in total). Phase 3 In digital storytelling workshops, using creative multi-media, we will co-produce an e-learning resource comprising: 6-8 digital stories (each focusing on a key aspect of schizophrenia), factual information and short multiple-choice quiz about issues raised by each story (e.g. hearing voices). We will produce web-based and DVD versions to enable people without internet access/computer literacy to participate. Phase 4 Participants will be 20-30 African Caribbean community recruits with family members diagnosed with schizophrenia. Using a test-retest design, we will assess their attitudes and knowledge about schizophrenia pre- and post-intervention. Pre-test, we will collect basic demographic data, test attitudes and knowledge to schizophrenia, perceptions of illness and participants own health before issuing link to on-line resource or providing the DVD. We will repeat measures 2 weeks and 6 months post-intervention, collect qualitative data (on acceptability and accessibility), and pilot recruitment, data collection, and outcome measures to inform future studies. Potential benefits for patients and NHS We anticipate the following short and longer term benefits to patients, families and the NHS Short term: 1. Improved attitudes and knowledge about schizophrenia and its management 2. Better understanding of the disorder thus more sympathetic family environments and less family tension, which reduces risk of relapse 3. Better engagement and experiences of schizophrenia services for African Caribbean families Long term: 1) Reduced delays in help-seeking 2) Better care pathways 3) Reduced relapse rates 4) Reduced rehospitalisation rates Wider potential future Public Health and NHS benefits: Knowledge transfer to improve engagement with other minority groups Better experience of services for high risk groups Facilitate MHSCT and other NHS organisations meet their Equality Duties Costs savings from reduced rehospitalisation and Commissioning for Quality and Innovation (CQUIN) payments linked to early intervention

Lay abstract: Educating families about schizophrenia reduces family tensions, facilitates engagement with services, and improves patient and carer experiences and outcomes. No culturally-appropriate resources specifically aimed at African Caribbean families with schizophrenia are available. This is important because African Caribbeans in the UK not only have far higher rates of schizophrenia than other groups, but are also much less likely to access services early. In consequence, they are more ill when the enter services, and have far worse outcomes. NICE guidance acknowledges deficiencies in provision and the need for work with African Caribbean stakeholders. We will co-produce an educational e-resource with African Caribbean stakeholders to improve families attitudes and knowledge about schizophrenia and facilitate engagement with services. First, we shall gather up-to-date literature and hold focus groups about constructing and delivering the intervention. Using this information, we shall produce 6-10 short digital-stories &ndash; each illustrating a key topic about schizophrenia from carer and user perspectives. We anticipate topics will include: diagnosis, symptoms, and treatment &ndash; especially medication. These will become the core of the resource together with factual information about schizophrenia and its management. Participants will be able to test their knowledge in question and answers related to each story and reflect on personal experiences. We shall test attitudes and knowledge before and after the intervention and 6 months later. We shall also test feasibility, acceptability and accessibility of the resource, along with methods for collecting requisite monitoring data on 20 families use of the resource. We shall collect key patient, family, carer-centred outcomes determined in focus groups and pilot collection of service-centred and cost data for future exploratory Randomised Controlled Trial (RCT). Anonymity and confidentially are important ethical priorities in this community given high levels of mental health stigma. We shall adhere to NHS and University ethics and Data Protection procedures.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH