Culturally-Adapted Family Intervention Study (CaFI)

Culturally-adapted family intervention for African and Caribbean people diagnosed with psychosis, and their families.

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Project background

People with psychosis, who come from African and Caribbean backgrounds, often get poor treatment in mental health services.

The National Institute for Health and Care Excellence (NICE) recommends talking therapies, like family intervention, to treat schizophrenia and psychosis. However, Sub-Saharan African and Caribbean people, including people of Mixed heritage, are not usually offered talking therapies.

A research team led by Professor Dawn Edge at The University of Manchester pilot-tested a new talking therapy, Culturally-adapted Family Intervention (CaFI), with Caribbean families. People diagnosed with schizophrenia, and their family members, liked CaFI. They thought it helped them better cope with the illness. However, the study was too small to see if the therapy really works.

Based on this work, the National Institute for Health Research (NIHR) has funded a larger-scale study to see whether CaFI can help people diagnosed with schizophrenia/psychosis and their families. This time, there are two main differences:

  1. CaFI was originally for families of Caribbean origin only. Now, people of Sub-Saharan African and Caribbean heritage can take part. This includes people who identify as Black British or Mixed heritage.
  2. The previous study was open to participants in Manchester only. This time, the new study will be open to people in Greater Manchester, Merseyside, London, Midlands and Southampton.

 

You can learn more about the first CaFI study in the video below. The video has short interviews with participants and the research team.

Project aims

This project has a number of different goals.

Our main focus is on finding out whether CaFI is at least as good as usual care offered on the NHS, which usually makes up of medication.

We also aim to:

  • Understand what helps and stops mental health services to offer CaFI 
  • Understand how to help services give CaFI to families regularly
  • Understand how we could overcome challenges to deliver CaFI to families in services
  • Find out if CaFI is good value for money

Timeline and process

See our timeline for what we want to do in the next four and a half years.

0-12 months
  • Get research ethics and other approvals
  • Set-up the CaFI research sites
  • Work with people of Sub-Saharan and Caribbean origin who are diagnosed with schizophrenia/psychosis, their relatives/carers/loved ones and health professionals to make CaFI and other materials better
  • Therapist recruitment and training
  • Recruiting and training Family Support Members (‘FSMs’) who can support people, who have lost contact with family, receive CaFI
13-24 months
  • Finding people to test CaFI
  • Making sure that people of African and Caribbean backgrounds like CaFI 
13-52 months
  • Finding more people to test CaFI
  • Giving CaFI to people diagnosed with schizophrenia/psychosis, their families and Family Support Members
  • Collecting information before receiving CaFI
  • Collecting information directly after receiving CaFI
  • Collecting information 6 months after receiving CaFI
  • Collecting information 12 months after receiving CaFI
  • Analysing the collected information
43-54 months
  • Share what we have learned with the public (including people who took part in the study), health professionals, policy makers and academics
  • Deciding what to do next

Meet the research team

Our research team makes up of research and healthcare experts from all over the country.

Manchester

 

Professor Dawn Edge: Professor of Mental Health & Inclusivity, Division of Psychology & Mental Health, at the University of Manchester. Prof Edge will lead the project, overseeing all aspects including setting up, data collection and analysis, dissemination, ethics and governance. She supervises the Trial Manager and Research Assistants (RAs) and oversee coordination across all sites. Prof Edge is currently on sick leave. She is expected to return in spring 2020.

Professor Kathryn Abel: Professor of Psychiatry & Director of the Centre for Women’s Mental Health. Kathryn provides expertise in schizophrenia, trial design and senior oversight of the trial.

Dr Lesley-Anne Carter: Lecturer at the University of Manchester. Dr Carter provides expertise in trial design and statistics.

 

Professor Katherine Berry: Professor of Clinical Psychology and HCPC registered Consultant Clinical Psychologist. Prof Berry contributes to trial design, refining the intervention and supporting materials, and therapists’ training.

Dr Richard Drake: Senior Lecturer/ Honorary Consultant Psychiatrist, at the University of Manchester.
Dr Drake contributes expertise in trial design and evaluating psychosocial intervention in schizophrenia, including expertise in culturally-adaptation.

 Professor Anthony Morrison: Professor of Clinical Psychology at the University of Manchester. In addition to expertise in trial design, Anthony facilitates service access and contribute expertise in trialling psychological interventions.

 

Mr Paul Wilson: Senior Research Fellow at Alliance Manchester Business School and the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care Greater Manchester (NIHR CLAHRC GM).

 

Professor Linda Davies: Professor of Health Economics Research at the University of Manchester. Linda has experience in the economic evaluation of interventions for people with mental health problems and provides expertise in health economics.

 

Mrs Helen Wilson: Project & Trial Manager at Greater Manchester Mental Health NHS Foundation Trust. Helen’s role includes ensuring that the project is run smoothly in all sites, and that it is conducted according to all legal and ethical guidelines.

Dr Henna Lemetyinen: Research Associate at Greater Manchester Mental Health NHS Foundation Trust. Henna previously worked in Prof Edge’s Culturally-adapted Schizophrenia Psycho-Education Resource (CaSPER) project. Henna supports the day-to-day activities of the Manchester site.

Mr Kieran Blaikie: Kieran will work as a Junior Statistician to conduct statistical analyses under Dr Carter’s supervision and guidance.

 

Jamal Alston: Jamal works as a Research Assistant, which for example includes participant recruitment, data collection (like interviewing people), and qualitative data analysis.

 

Miss Alison Wilkinson: Alison is an undergraduate psychology student. She is working with the CaFI team as an honorary research assistant till the end of July 2020 as part of her degree prior to starting her last year in university. Alison duties include data entry, data collection and analysis, maintaining records, assisting with study approvals, study promotion and participant recruitment.

 

 

London

Dr Claire Henderson: Consultant Psychiatrist at the Kings College London. Dr Henderson’s role in this project is to provide expertise in trial design and mental health related stigma and discrimination. Dr Henderson will be the site lead in London. Dr Henderson is the Acting Chief Investigator during Prof Edge’s temporary absence.

Dr Shubulade Smith CBE: Consultant Psychiatrist at the Kings College London. She was appointed a CBE in 2019 for services to forensic psychiatric intensive care. Dr Smith’s role in this project is to provide expertise in transcultural and forensic psychiatry, and mental health policy.  


Dr Louisa Codjoe: Psychologist at the Kings College London. Dr Codjoe’s role in this project is to provide expertise in transcultural psychology.

 

 Research Assistant – to be confirmed.

Midlands

Coventry & Warwickshire

Professor Swaran Singh: Head of Mental Health and Wellbeing at the University of Warwick. With a strong track record of multi-disciplinary collaboration and successful trials, Prof Singh will be site lead for the Midlands

 

Miss Bliss Gibbons:  Research Assistant based at the Coventry & Warwickshire (CovWark)Partnership NHS Trust. She is responsible for the day-to-day activities of the Midlands site, which, in addition to CovWark, include also Birmingham & Solihull Mental Health NHS Foundation Trust.

 

Nottingham (a reserve site)

Professor Gillian Doody: Dean of Medical Education at the University of Nottingham. Gillian will contribute expertise in psychosis and medical education. Her experience as member of the Aetiology and Epidemiology of Schizophrenia and Other Psychoses (AESOP) team will be invaluable. She will be site lead for Nottingham.

South

Southampton

Professor Shanaya Rathod: Visiting Professor, University of Portsmouth.  Shanaya’s role is to provide expertise in cultural adaptation and to be the site lead for Southern Health Care (Southampton).

 

Bristol (reserve site)

Dr Jonathan Evans: Consultant Senior Lecturer, Centre for Academic Mental Health, School of Population Health Sciences, Bristol Medical School, at the University of Bristol. As site lead in Bristol, Dr Evans will provide expertise in psychosis and liaison with clinical services. 

Collaborators

Reverend Paul Grey: Independent Service User Consultant and ‘expert by experience’. Rev Grey will provided invaluable insight from the service user perspective.

Ms Sonia Lindsay: Carer Consultant and ‘expert by experience’. A member of the RAG in our CaFI feasibility study, Ms Lindsay will provide expertise from the carer perspective.

Mrs Michelle Ayavoro: Community Member and activist. A member of the RAG in our CaFI feasibility study, she will be a community-focused Independent Consultant on this project.

Dr Josanne Holloway: Clinical Lead, Greater Manchester Mental Health NHS Foundation. Dr Holloway will facilitate access to services via clinical PI and community forensic services.

Dr Nicholas Jon Kennedy: Consultant Psychiatrist, Birmingham & Solihull Mental Health NHS Foundationb Trust. Dr Kennedy’s role will be to provide expertise in transcultural psychiatry and Clinical PI for Birmingham.

Dr Judith Richardson: Programme Director – Quality and Leadership, Health and Social Care, NICE. Dr Richardson will contribute expertise in Health Service Policy and service implementation.

Participant resources

If you are interested in taking part in our study, please find information in the drop-down menu. 

 

 

Events and participation 

We meet with communities regularly by organising events and workshops to give everyone opportunities to learn about CaFI. These events are opportunities for you to let us know what you think about the project and share any ideas you may have. The events you see on our website are organised by date.

 

 

Mental Health Services & the African and African-Caribbean diaspora Conference 23rd October 2019

The CaFI study lead, Professor Dawn Edge, and a Co-Investigator, Dr Shubulade Smith, are organising a conference with the Royal College of Psychiatrists titled Mental Health Services and the African and African-Caribbean diaspora – the impact of discrimination and how to combat this. 

This 1-day conference will take place in London. For more information, please go to the conference webpage: https://www.rcpsych.ac.uk/events/conferences/detail/2019/10/23/default-calendar/black-mental-health 

Manchester Service Users' Focus Group (September, 2019)

We ran a focus group with sevice users to learn about their views on the content and materials of the CaFI, and what we should consider when CaFI is delivered in the next phase of the study. The focus group took place in the Windrush Millennium Centre, Moss Side, Manchester. 

Manchester Relatives/Carers' Focus Group (September, 2019)

We ran a focus group with relatives/carers of people diagnosed with schizophrenia/psychosis. The focus group aimed to learn about their views on the CaFI therapy content and materials, and anything we will need to think about when we start to deliver CaFI in the next phase of the study. The focus group took place in the Windrush Millennium Centre, Moss Side, Manchester.

Manchester Healthcare Professionals' Focus Group (September, 2019)

We run a focus group with professionals to learn about their views on the CaFI content and materials. We also asked them about what else we should consider before we start delivering CaFI in the next phase of the study. The focus group took place in the Rawnsley building, Manchester Royal Infirmary.

Resource Development Day (September 2019)

This full-day workshop was attended by a range of key people in the study, including relatives/carers, family therapists, Clinical Psychologists/Trainee Psychologists, researchers from the cultural adaptation field and some CaFI team members. The workshop included group work to find ways to adapt and make CaFI therapy resources better. The resources will be used by CaFI therapists, service users and families/Family Support Members. The event took place at the Greater Manchester Mental Health NHS Foundation Trust (Manchester Royal Infirmary campus). 

 

Information & Recruitment Event (August 2019)

This evening event took place in the Amani Centre, Moss side, Manchester, to tell the local communities about the project and how they could take part. This was also an opportunity for people to meet the Manchester team. 

Manchester Launch Event (July 2019)

We organised a lunchtime launch event in the Amani Centre, Moss Side, Manchester to talk to service users, relatives/carers and community members about CaFI. This was an opportunity for  members of the public to meet the CaFI Manchester team and find out how to take part.

Networking Lunch (April, 2019)

This is our first London-based event, which was organised together by  the Manchester and London teams. This event was aimed for mental health and social care professionals to learn about CaFI. The event took place in ORTUS Conferencing Centre, Denmark Hill, London.

Study Logo Workshop (February, 2019)

We organised a workshop with service users, relatives/carers and community members to design the CaFI logo. The workshop was run together with an organisation called HerArt CIC. The event took place in Trinity House Community Resource Centre, Rusholme, Manchester. 

Outputs

We have a number of outputs related to CaFI and other work available.

 If you have difficulties with accessing any of these articles/reports, please contact the CaFI team (cafi@gmmh.nhs.uk) for further information.

CaFI Feasibility Pilot Study Report

The CaFI pilot study report can be found on the National Institute of Health Research Journal Library. The report outlines the methods and findings from the first CaFI study, which tested CaFI with families of Caribbean origin in Manchester. For example, the report discusses how CaFI was developed with families, how it was tested and how families and healthcare professionals found CaFI. The report is available to all for free of charge.

Culturally-adapted Knowledge About Psychosis Questionnaire

This article presents findings from a study that culturally-adapted a well-known questionnaire, Knowledge About Psychosis, to make it more relevant to people of African-Caribbean heritage. This study produced a reliable questionnaire, that can be used in research and healthcare settings. The article can be viewed on the publisher’s website. 

 

Case examples from CaFI therapists

This article reports on 3 completely anonymous examples of families who took part in the CaFI feasibility pilot study. Their therapists reflect on how they worked with these families, and the strengths and weaknesses of CaFI as a ‘talking therapy’ for these families. The article can be accessed on the publisher’s website. 

CaFI Feasibility Pilot Study Protocol

This paper outlines the methods and procedures used in the ‘CaFI-1’ (pilot) study. The article can be viewed on the publisher’s website.

Culturally-appropriate e-Learning Resource Study Protocol

This paper outlines the methods and procedures used in CaFI’s sister study, Culturally-appropriate Schizophrenia Psychological Education Resource, or CaSPER for short. CaSPER was developed and pilot tested together with families of Caribbean heritage in Manchester. It will be used as a resource in the current CaFI study. The CaSPER protocol paper can be found on the publisher’s website.

Psychology Across Cultures

This article explores how mental health interventions could be made more relevant, culturally-appropriate, and effective globally. The article can be viewed on the publisher’s website.

Getting involved

There are a number of ways to get involved in this project, with a variety of roles on offer.

Whether you are a service user, a family member/carer, a community member, a health professional, a student or an academic, there is a part for you to play in this study.

If you would like to register your interest, please contact the research team on cafi@gmmh.nhs.uk 

Alternatively, you may contact Helen Wilson, Project & Trial Manager, directly on:

Email: helen.wilson@gmmh.nhs.uk
Tel: 0161 276 3312

@cafistudy