26 Jun 08

32 carers were interviewed about their experiences of caring for someone with mental health problems

People from black and minority ethnic backgrounds with mental health problems, and their carers, can benefit from the experiences of others with similar conditions on a new section of the award-winning DIPEx patient website, thanks to research by Oxford University and the University of Westminster.

‘The website gives voice to people with mental health problems and carers from black and minority ethnic (BME) backgrounds, many of whom would like services to be more culturally appropriate and would like to support others by sharing their story,’ explains Dr Krysia Canvin, Senior Researcher at the University of Oxford, who conducted interviews as part of the research.

Many people from BME communities report that they benefit from sharing experiences and look for personal stories when searching the internet for health information.

Dr Canvin interviewed 32 people across the UK from different backgrounds about their experiences of having a mental health problem. The site, www.dipex.org.uk, features their individual stories, including what happened when they developed mental health problems, how it affected work, relationships and finances, and experiences of mental health services and treatments. Each contribution contains video, audio and written clips from the interviews.

‘You could read in the paper what the symptoms of schizophrenia are, but if you read it as somebody’s story, that’s much more powerful,' says Dolly, a mental health service user.

Jorun Rugkåsa, Senior Research Fellow at the University of Westminster, interviewed 32 carers who were looking after their children, parents, siblings and other relatives. The topics raised by participants – such as what it takes to care for someone with mental health problems, how being a carer affects health, social life, and relationships, and the cultural appropriateness of mental health services – are featured on the DIPEx website.

‘One size doesn’t fit all, so not all Muslim people will have the same issues, not all Hindu people,’ explains Nita, a carer. ‘So you can’t have a package that’s going to fit all BME carers.’

In these two studies, the DIPEx research team spoke to people from backgrounds including Black British, Black African, Afro-Caribbean, Bangladeshi, Pakistani, Indian, Chinese, European, Latin American and Japanese. Participants talk about what it’s like to have, or to care for someone with, anxiety disorders, depression, bipolar disorder, schizophrenia, personality disorder and dementia.

As well as acting as a source of support and information, the DIPEx site is also widely used for teaching health professionals, helping them to understand users’ and carers’ needs.

The DIPEx research group within the University of Oxford was set up by Dr Ann McPherson CBE, University Lecturer in General Practice, and Dr Andrew Herxheimer, after their own personal experiences of illness. Experiences of over 40 health conditions have been published to date, including sexual health of young people, teenage cancer and young people with long-term health conditions. Each section is based on academic research and includes interviews with approximately 40-50 people from a variety of ages, backgrounds and ethnic groups.

The DIPEx website is run by the DIPEx charity and won the BUPA Foundation Communication Award in 2004, and in 2005 won prizes from the Health Services Journal and the BMA book awards for websites.

The research with people with mental health problems was funded by the Care Services Improvement Partnership and the research with carers was funded by the Department of Health.