Culturally-adapted Family Intervention (CaFI) for African Caribbean people diagnosed with schizophrenia and their families: A feasibility study of implementation and acceptability
Summary of Research
One of the most consistent findings from mental health research is that African Caribbean people in the UK are more likely to be diagnosed with schizophrenia than all other ethnic groups. The AESOP (Aetiology and Ethnicity in Schizophrenia and Other Psychoses) study in 3 cities (London, Nottingham, and Bristol) reported schizophrenia rates 9 times higher in African Caribbean people when compared to White British people. Despite high numbers in specialist services, African Caribbean people have worse outcomes and experience than any other ethnic group. For example, it takes them longer to receive diagnosis and treatment so they are more severely ill when they come into contact with mental health services. They receive higher doses of medication and are less likely to be offered psychological therapies, such as family therapy. They are also more likely to be brought into hospital by the police under the Mental Health Act. The way African Caribbean people access care is therefore more negative than for other groups and creates fear and mistrust. Thisreduces and delays engagement with mental health services. The ‘burden of care’ that families experience as a result of long periods of untreated illness can be tremendously stressful, creating hostile home environments and family breakdown. This can cause service users to become socially-isolated, which increases risk of relapse and readmission to hospital.
The National Institute for Health and Care Excellence (NICE) highlight the urgent need to improve access toeffective and evidence-based care,experiences of services, and outcomes for African Caribbean groups.Family Intervention is a ‘talking therapy’ delivered toservice users and their families thathas been shown to be both clinically-effective and cost-effective. However, service users diagnosed with schizophrenia are rarely offered it. African Caribbean people diagnosedwith schizophrenia are even less likely to be offered Family Intervention due to high levels of family disruption and the coercive approaches outlined above. Previous discussions with former service users, carers and community members confirmedthat they are dissatisfied with current service provision;they desire more culturally-appropriate treatments including ‘talking therapies’ and want more involvement in care and risk management. We therefore plan to address these concerns and test the feasibility of developing a family therapy which specifically meets the needs ofAfrican Caribbean people. The therapy will be testedwith service usersthat are currently using mental health services in Manchester (Manchester Mental Health and Social Care Trust), across three different settings; 1) acute wards, 2) rehabilitation wards, and 3) Community Mental Health Teams (including those on Community Treatment Orders). Where service users have no contact their own families,we will ask them to nominate ‘trusted individuals’ who we will train to act as ‘proxy families’. We are looking for service-user peers and community volunteers to become members of these ‘proxy families’ and support the service users during the therapy sessions.
Study aims
Our study has 2 key aims:
- To assess the feasibility of culturally-adapting, using and evaluating a new approach to Family Interventionfor African Caribbean service users diagnosedwith schizophrenia and their families in differentclinical settings.
- To test the feasibility and acceptability of delivering Culturally-adapted Family Intervention (CaFI) using ‘proxy families’ where biological families are not available.
Study outline
This is a three year study based at Manchester Mental Health and Social Care Trust and The University of Manchester. The research has been funded by the National Institute for Health Research(NIHR) Health Service & Delivery Research (HS&DR) Programme
The research will be conducted in three main phases:
PHASE 1: Culturally-adapting the family therapy
We will use literature and information from focus groups with current and former service users, families, carers and advocates, and health professionals (24-30 people) to conduct a consensus conference with 24 ‘experts’. These ‘experts’ will identify key elements of an existing family therapy (Family Intervention - developed by co-applicants Barrowclough & Tarrier) that will bechanged to meet the needs of African Caribbean service users and their families. Participants will decide on the content, form and length of CaFI and identify key outcome measures. They will also agree contents of a draft manual which we will refine using suggestions from our Research Advisory Group (RAG) of service users, carers and community members.
PHASE 2:Training
We will provide cultural competence training for therapists who will deliver CaFI. The training is designed to increase their understanding of African Caribbean culture and values. We will also prepare service-user peers and community volunteers to participate as ‘proxy-families’. Finally, we will run 3 cultural competency seminars for staff in the participating NHS settings.
PHASE 3: Feasibility study
We will deliver and evaluate CaFI with 30 consenting service users and/or their families, who express an interest and are able to give informed consent.There will be 10service users recruited in each setting: acute wards, rehabilitation wards, and in the community. The exact form and content of CaFI will be decided during Phase 1 of the study. We anticipate that, over 12 months, participants will receive 10 (1-2 hour long) sessions of CaFI. NICE evidence suggests that this number has long term benefits. ‘Proxy families’ will take the place of absent biological families.
We expect that key components of CaFI will include:
1.Psycho-education on the nature, prognosisand treatment of schizophrenia; including medication (dose, mode of delivery, effects and side-effects), use of the Mental Health Act, and the role of agencies like the police and approved Mental Health Professionals.
2.Stress management and strategies for creating more benign family environments.
3.Problem-solving regarding practical ways to deal with mental health crises and self-care. Additional items from focus groups may include shame and stigma, illicit drug use, and the relationship between spirituality and mental illhealth. To help us design further research, we will also pilot collecting outcome measures and evaluate the acceptability of CaFIto service users, families and professionals.
This project was funded by the National Institute of Health Research Health Service and Delivery Research Programme (Project Number: 12/5001/62)