"It's not additive it's synergistic: Survivor + researcher does not equal Survivor researcher who USES reflexively and collectively Survivor experience in all work"
- Diana Rose, Professor of Service User Led Research
What is Lived Experience Research?
The above quote from Professor Diana Rose beautifully describes the different approach used by researchers who actively work from the lens of lived experience, sometimes called 'Survivor' or 'Lived Experience' researchers. The benefit of the approach is to centralise focus on the people who should benefit from the research - the people who live with mental health conditions. This is achieved through consciously keeping them at the heart of the entire research process. This will often inform the approach and method, the questions asked, the framing of these questions, thinking about the ethics process, the lens through which analysis takes place and thought to dissemination of findings.
Lived Experience Researchers are at their most effective when employed from the beginning of a project, in order to incorporate this approach directly into the chosen research method. Lived Experience Researchers are far less able to use this skillset when employed to work on a project that has been developed from a purely academic lens.
Many Lived Experience Researchers have academic qualifications and working experience within their specialisms, in addition to the lived experiential knowledge they actively draw on. There are several Professors, Doctors and academics actively working in this field in the UK. Lived Experience research naturally tends to lean towards understanding more about how or why something is happening, how people feel about something, or if a service is meeting a need. These types of projects are often qualitative in nature, and fall within a constructionist frame of reference. They often require conversation, and the open disclosure of lived experience to research participants can often result in a different dynamic and access to different data than may be obtained through an academic approach. The research design should acknowledge the lens within the methodology to address critique of bias.
Tamar has extensive experience of working within commercial market research since 1998 and later went on to specialise in arts marketing research with an Arts Council funded Audience Development agency. She has a Master of Science award and a Post Graduate certificate in Analysis & Evaluation from the Chartered Institute of Marketing . The MSc research dissertation was written from a Lived Experience lens. She has more recently undertaken academic projects working this way, which she would describe as being very different from the approach used as a non-lived experience researcher. Her experience as a market researcher also taught her that even research which is designed using a quantitative or statistical approach and often from a positivist lens has limitations in terms of giving an accurate representation of what a person wanted to communicate and the box available to tick. The gap between the two is what interests Tamar, and why she now prioritises working in this way.
Examples of what this type of working can looks like in practice are detailed below:
Current Research Projects
LIVED EXPERIENCE PRACTITIONERS RESEARCH STUDY
The Lived Experience Practitioners Research Study is a collaboration between Fiona Stirling, Melanie Ann Ball and Tamar Jeynes. The study is designed as an initial exploration of the enablers and barriers to staffs who use their lived experience when working within the field of personality disorder. Their shared interest in this area was generated by personal working experience, shared conversations with colleagues, and observation of similar issues being reported elsewhere. The aim of the study is to gather perceptions of helpful and hindering features within relevant work/ volunteering environments, identifying common themes and aiding understanding in this area.
An invitation was given to staff undertaking what was referred to as ‘lived experience practice’ to complete an anonymous online survey. This term was defined to include individuals who were working or volunteering within the field of mental health directly related to the personality disorder diagnosis, or who had received a personality disorder diagnosis and were currently working in generic mental health settings (e.g. peer support workers who might be based in a CMHT or CRHT). Examples of this could include: registered professionals (e.g. clinical psychologists, nurses, occupational therapists) who also have a lived experience of receiving a personality disorder diagnosis, or volunteers, peer support workers, KUF trainers, commissioners, or strategists.
The online survey was completed in 2018 with 105 participants, and the topline findings were presented at the annual conference of the British and Irish Group for the Study of Personality Disorder, in March 2018. A video of the 20 minute talk is below, along with the Question & Answer session that followed. Currently a more in-depth analysis of the data is being undertaken, which we hope will provide an initial look at the perceived prospects for those who identify as Lived Experience Practitioners. Results will be submitted to a peer reviewed journal by then end of 2019. . The research has been ethically approved by the University of Abertay, Dundee.
BIGSPD CORE RESEARCH TEAM
Tamar recently joined the British and Irish Group for the Study of Personality Disorder (BIGSPD) core research team as one of two 'Lived Experience' researchers, alongside Dr. Gary Lamph, Dr. Alison Coak and fellow LE researcher Jake Dorothy.
They are undertaking a research project with the aim to collate perceptions of the diagnosis of 'Personality Disorder' from a range of staff from a variety of disciplines and persons with lived experience of the diagnosis. The method used will be a World Cafe event held at the BIGSPD 2019 conference, assisted by a team of facilitators from lived experience and working experience backgrounds.
Analysis of topline data will be presented at the conference, with further in-depth analysis carried out and findings produced for submission to a relevant academic journal in 2019.