Co-production and evaluation of an e-learning resource to improve African-Caribbean families’ knowledge about schizophrenia and engagement with services: a pilot randomised controlled trial protocol

Abstract

Abstract Background A higher proportion of African-Caribbean people in the UK are diagnosed with schizophrenia spectrum disorders than other ethnic groups. High levels of shame and stigma at individual and community levels contribute to delayed access to care, potentially increasing the duration of untreated psychosis and so worsening outcomes. Inferior access, more coercive care, and worse outcomes have created a ‘circle of fear’ of mental health services within African-Caribbean communities. This further discourages early engagement with statutory services and increases the burden of care for families living with schizophrenia. Providing tailored and relevant information about psychosis (psychoeducation) has the potential for improving outcomes for patients and families. However, there are no culturally appropriate psychoeducation programmes for African-Caribbeans in the UK. We aim to determine whether an e-learning resource, co-produced with African-Caribbean stakeholders to improve knowledge about psychoses, would be culturally acceptable and accessible to members of this population. Methods A pilot randomised controlled trial of the feasibility of co-producing and testing a novel e-learning resource to improve knowledge about and attitudes towards schizophrenia in African-Caribbean families. We will seek to recruit 40 participants, aged ≥ 16 years, either to receive the intervention or as controls. They will self-refer or be referred via inpatient and wellbeing services, family and carers’ forums, statutory community mental health teams, and voluntary sector/non-governmental agencies (NGOs). Participants will complete the Ca-KAP, ASMI, and SF-12. Acceptability will be explored qualitatively via focus groups and individual semi-structured interviews. Discussion The proposed trial will demonstrate the feasibility of conducting a fully powered RCT to evaluate the efficacy of an e-learning resource about schizophrenia with African-Caribbean families. Qualitative work will explore the intervention’s accessibility and barriers/facilitators to participation, including attitudes to randomisation. These data will facilitate further refinement of the intervention. Trial registration ISRCTN11394005, retrospectively registered 20/03/2018.

Keywords

• African-Caribbean
• Schizophrenia
• Psychosis
• E-learning
• Digital health