Sharing Lived Experience in Mental Health Services

Jonny Lovell, PhD student in the International Centre for Mental Health Social Research at the University of York, has recently completed his thesis on sharing lived experience in mental health services. He conducted this research with Alison O’Connell and Sally Rawcliffe-Foo of Leeds and York Partnership NHS Foundation Trust. He has kindly written this short summary of his findings.

From anecdote to evidence

In 2013, anecdotal evidence indicated that sharing personal mental health lived experience by mental health practitioners with service users was controversial, though some practitioners and service users thought it might have many potential benefits.  In response, the University of York undertook research in Leeds and York Partnership NHS Foundation Trust (LYPFT) and NorthWestern Mental Health (Melbourne, Australia) to investigate whether practitioners and service users perceived sharing personal experience of mental illness as helpful or unhelpful.

Methods

The research was undertaken through surveys in the UK, and focus groups in the UK and Australia.  Surveys (sent to practitioners and service users) asked respondents to give real-life examples of information that had been shared with service users, and whether these were helpful or unhelpful.  Respondents also rated the helpfulness of different types of hypothetical disclosure, and the helpfulness of mental health disclosure by different types of practitioners, including peer workers, nurses, social workers and doctors.   Focus groups enabled deeper exploration of issues, analysis of survey findings, and international comparison.  Findings were analysed by the researcher and service users.

Findings

Although service users rated mental health experience as the most helpful type of information that practitioners might hypothetically share with them, it was least often shared in real life.  Practitioners shared less controversial and ‘safer’ information more often, such as hobbies and activities.  In the real-life examples that respondents gave, most practitioners had shared some information about themselves with service users at some point, but mental health lived experience was shared less often than other types of information, mainly because of perceived risks.

To reduce risk, some practitioners avoided making disclosures about their own mental health and other life experiences.  However, some service users indicated that non-disclosure led to cold relationships and disengagement, and compounded feelings of isolation, despair, and stigma.  In contrast, some service users indicated that it could be helpful, and sometimes especially powerful, for all types of practitioner to share their lived experience, because of the positive impact this could have on recovery and stigma reduction. Despite hypothetical risks, when experiences of mental health problems were shared in real life, as with all other types of information sharing, both service users and practitioners perceived sharing as helpful.

Impact

As a result of this research,  LYPFT reviewed policy to support staff to make decisions about how they might best share lived experience.  A training package was developed and delivered for practitioners in LYPFT, and self-evaluations indicated that staff knowledge and confidence around sharing lived experience increased as a result of the training.

Previous research on self-disclosure indicates that disclosure is mostly helpful or neutral, and rarely unhelpful.  The current research agrees with this, and indicates such findings are relevant to disclosure of mental health experiences, rather than other types of disclosure.

Further reading

This summary and the final research report are available at: https://jonnylovellblog.wordpress.com/

The full thesis is available at:  http://etheses.whiterose.ac.uk/19278/1/Jonathan%20Lovell%20PhD%20Thesis%202017.pdf