S haring Lived Experience in Mental Health Settings

1. Sharing Lived Experience in Mental Health Settings Jonny Lovell PhD Student International Centre for Mental Health Social Research Department of Social Policy and Social Work University of York

2. Background Career in voluntary sector since 1996 in variety of roles including: • Sexual health and community development work with men who have sex with men, and young men involved in selling sex (North and West Yorkshire). Genuine occupational qualification for workers to be (a) men who have sex with men, and (b) “out” about their sexual orientation • Work with young people at risk on the streets(Manchester); project manager for national children’s charity (Cornwall) providing community development services for Sure Starts, and with Traveller communities; variety of other roles • Returned to education to train as social worker in 2011, qualified in 2013

3. Social Work MA - 2012 • First placement instructed to hide my sexual orientation & if asked, deny it, because clients may be homophobic, self-disclosure unprofessional, and dangerous – clients will use information against you • Research for MA dissertation: little written about self-disclosure in social work (more within counselling); contentious - invokes strong feelings among practitioners • Explored attitudes to different types of disclosure including: Sexual orientation Family structure Religion/ethnicity Mental health

4. Sharing Lived Experience • Contacted by Recovery & Social Inclusion Worker at Leeds and York Partnership NHS Foundation Trust (mental health trust) – want to explore issue within mental health services • Debate in the Trust about sharing “lived experience” of mental health experiences and conditions by practitioners with service users

5. Sharing Lived Experience SLE integral to the role of Peer Support Workers (a genuine occupational requirement) – their status is known automatically by colleagues and service users More controversy about wider practitioners – what is acceptable to share, when, with whom, and why? Anecdotal evidence suggests: • Some professionals share their lived experience • Many more professionals do not • Reasons for not sharing include: it is unprofessional, risky, and practitioners are prevented from disclosing by their professional codes of practice/ethics

6. Peer Support Workers & Sharing Lived Experience 2014 systematic review (Lloyd-Evans et al, 2014) suggests: While there is debate about efficacy of peer mentor programmes and impact on outcomes such as hospitalisation, readmission, quality of life etc. evidence suggests peer mentor programmes can: • Promote recovery • Provide hope for the future • Empower service users

7. Peer Support Workers and Wider Practitioners • Sharing lived experience is integral to the role of Peer Support Workers (implicitly beneficial to the role) • Is sharing lived experience only perceived as helpful if it is done by Peer Support Workers? • Might it be more or less helpful for wider practitioners to share their lived experience too? • How do practitioners and service users see the benefits of sharing lived experience?

8. The research • Partnership between the University of York and Leeds and York Partnership NHS Foundation Trust • Developed in collaboration with peer support service in consultation with service users • Data collection to begin July 2014 • Multiple methods design: • 1. Quantitative survey (ratings scales) • 2. Qualitative survey (free-text boxes) and follow up focus groups

9. Survey: Practitioners & Service Users 3 main parts: 1. Asks for examples of things that have been shared by a practitioner, and what was helpful or unhelpful about them. 2. Ratings: how helpful/unhelpful are different types of disclosure perceived to be? Including: religion, physical health, mental health, sexual orientation, your family circumstances, difficult or traumatic life experiences, and hobbies or out of work activities. 3. Ratings: how helpful/unhelpful is it for different practitioners to disclose? Including doctors, nurses, peer support workers, psychologists, psychiatrists etc. Free-text boxes enable respondents to explain why they answered the way they did.

10. Analysis & Focus Groups Service users will be involved throughout the research including data analysis Emerging themes will be explored in: • Practitioner Focus Groups • Service User Focus Groups Co-facilitated by service users

11. Hypotheses Ratings and views on the helpfulness of sharing lived experience will be affected by: • The job role of the disclosing practitioner • The subject of the disclosure (i.e. what is being shared) • The level of intimacy of the disclosure • Whether the respondent is service user or a practitioner

12. International Partner • Research mirrored in Melbourne, Australia • Proposed collaboration between University of Melbourne, NorthWestern Mental Health (Melbourne) and University of York Will enable: • Cultural comparison • Wider perspective

13. Training and Guidance Training and guidance for practitioners on sharing lived experience will be produced, piloted and evaluated: • In collaboration with service users and practitioners • Incorporating feedback from survey and focus groups • Including a short film of service users’ and practitioners’ views of sharing lived experience • Made available internally (LYPFT) and externally

14. Timescale

15. Updates Updates are being posted on www.jonnylovellblog.wordpress.com

16. Relevant literature Barker, T., Routley, B., Nettle, M. and Leech, F. 2011. The Case for a Formal Peer Support Service in Worcestershire. [On-line]. Available: http://www.hacw.nhs.uk/EasysiteWeb/getresource.axd?AssetID=21244&type=Full&servicetype=Attachment [Accessed: 15.08.13] Henretty, J. & Levitt, H. 2010. ‘The role of therapist self-disclosure in psychotherapy: A qualitative review.’ Clinical Psychology Review. 30 (1): 63-77. Lloyd-Evans, B., Mayo-Wilson, E., Harrison, B., Istead, H., Brown, E., Pilling, S., Johnson, S., and Kendall, T. 2014. ‘A systematic review and meta-analysis of randomised control trials of peer support for people with severe mental illness.’ BMC Psychiatry. 14:39. Lovell, J. 2013. ‘Social Workers’ Attitudes towards Practitioner Self-Disclosure of Sexual Orientation with Clients’. Unpublished. York. University of York. McManus, S., Meltzer, H., Traolach, B., Bebbington, P. and Jenkins, R. (Eds). 2007. Adult psychiatric morbidity in England, 2007: Results of a household survey. [On-line]. Available: https://catalogue.ic.nhs.uk/publications/mental-health/surveys/adul-psyc-morb-res-hou-sur-eng-2007/adul-psyc-morb-res-hou-sur-eng-2007-rep.pdf [Accessed 20.08.13] Reidy, H. and Webber, M. 2013. Edited by Rayner, S., Anthapoulos, S. and Doue, P. Evaluation of the Peer Support Scheme in Southwark. [On-line]. Available: http://www.hacw.nhs.uk/EasysiteWeb/getresource.axd?AssetID=21244&type=Full&servicetype=Attachment [Accessed: 12.08.13] Repper, J., & Carter, T. 2010. Using Personal Experiences To Support Others With Similar Difficulties. A Review Of The Literature On Peer Support In Mental Health Services. London. Together and The University of Nottingham. Singleton, N., Bumpstead R., O’Brien, M. , Lee, A. and Meltzer, H. 2000. Psychiatric morbidity among adults living in private households. London. The Stationery Office.