Who?

Young people (aged 16 to 25) who have experienced psychosis.

What?

Collecting young people’s stories about what experiencing psychosis is like for them. 

AIM

To create a new multi-media web-based resource at www.healthtalk.org, where people can find out about what life is like for young people who experience psychosis.

The new Healthtalk web pages will provide practical information, advice and support to young people who have experienced psychosis, and to their family and friends. It will also be a valuable resource for medical and social care professionals, students and trainees.

WHAT IS INVOLVED

Collecting people’s stories about what experiencing psychosis is like for them. This will be done through video/audio recorded interviews with 30-50 young people (aged 16 to 25) in England.

Clips from the interviews will be used to build the web resource. It is hoped that someone visiting the new website might see/hear things that are familiar to their own experiences, and gain insight into what it is like for others.

HOW THIS WILL HELP

The new Healthtalk resource will help young people, their friends and family, medical and social care professionals, students and trainees to:

  • Find out what really matters to young people who experience psychosis;
  • See how young people understand and manage their mental health;
  • Answer common questions from the viewpoint of people who experience psychosis themselves.

The idea is that seeing and listening to other people talking about their experiences on the Healthtalk website will provide young people (and their family and friends) with additional help, emotional support and practical information. Young people can read about and hear their peers talk about all aspects of their health experience, including what has helped, or not helped, and why; how they have managed difficult situations; and their plans for the future.

Health and social care professionals, students and trainees who want to understand what it is like for young people with lived experience of psychosis can also gain valuable information and advice from the website and tell young people under their care about the website.

HOW WE WILL DO IT (METHODS)

Our researcher, Fauzia Knight, based at the Health Experiences Research Group will travel around England to interview young people who would like to share their experiences of psychosis with others.

Interviews will be relatively informal, asking participants to talk about whatever is most important to them about their experience of psychosis. Fauzia will also ask questions about experiences of diagnosis, hospitalisation, support, friendships and relationships, and school/study/work. Interviews are recorded using video and audio equipment (depending on the participant’s preference). Participants can choose whether video, audio or written clips from the interviews are shown on the Healthtalk website. Participants are given a copy of the written transcript of their full interview and have the opportunity to edit out any bits they chose.

All participants are given a £20 shopping voucher as a thank you for taking part.

Fauzia will use the interviews to write summaries showing the different experiences people have had. The summaries will include short 1-2 minute video, audio and written clips from the interviews to illustrate some of the things that people spoke about. After being checked by other experienced researchers at the Health Experiences Research Group, and an advisory panel member, the summaries will be used to create a new web resource at Healthtalk.org. The website is maintained by the charity Dipex.

The project is funded by NIHR CLAHRC.

WHY THIS IS IMPORTANT

Psychosis begins for most people in adolescence and early adulthood. The first experience of psychosis can be traumatic and can affect the young person’s sense of identity, their relationships with their peers and family members, and their plans for the future.

Research suggests that young people are more likely to rely on others for support. When it comes to living with psychosis and its impact on day to day life, advice and support from their peers is highly valued.

An impact report in 2015 showed that users of the Healthtalk website felt “less alone”. People using the website felt better informed, found information they did not find elsewhere and found that watching videos of their peers talking about their experiences helped them to understand the issues better. They also felt “reassured”, and that those sharing their experiences on the website understood what was important to them. After using the website people felt better prepared for possible changes in their own health.

HOW TO GET INVOLVED

If you are aged 16 to 25 and would like to take part in an interview and share your experiences of psychosis, our researcher, Fauzia Knight, would like to hear from you. You can get in touch by e-mailing Fauzia (e-mail: Fauzia.knight@phc.ox.ac.uk; by phone (mobile: 07595 288 116) or on twitter (@FKnightOx)

You can also download a flyer with Fauzia’s contact details here.

Further links:

Blog page: www.livedpsychosis.wordpress.com

Twitter page: @FKnightOx

More about Healthtalk:  http://www.healthtalk.org/about/overview

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