Sharing lived experience

Next in my series of posts about chapters from the Routledge Handbook of Social Work Practice Research, I caught up with co-author of chapter 30, Dr Jonny Lovell.

I first met Jonny when he was in the second year of his MA in Social Work at the University of York. He started this in 2011 after working for 15 years in the voluntary sector in health promotion and community development. Instead of taking up a social work job he had secured after completing the programme, he obtained a competitive PhD studentship with me in the International Centre for Mental Health Social Research. I had the pleasure of supervising him and he went on to complete his PhD in Social Policy and Social Work in 2017.

The book chapter reported findings from your PhD research. Can you say a little bit about why you wanted to do a PhD?

Going back to University to do my MA at 40 was scary, but I worked hard, surprised myself by securing a good grade, and then I wanted to see how far I could go and what I was capable of. This PhD enabled me to develop my interest in research and provided an opportunity to contribute to practice development.

Why did you choose to explore sharing lived experience in mental health services?

I didn’t really choose the subject of the PhD, it chose me. When I did the MA in Social Work, I did my research dissertation on the subject of self-disclosure. This was because of an incident on one of my placements where, on discovering that I am gay, my placement supervisor told me I must conceal it from service users and, if asked directly, deny it, because people would not want to work with me if they knew.

I was shocked by that. While I wasn’t planning on proactively telling anyone, I didn’t feel the need to conceal it either. I’d worked for years in gay men’s health promotion, so I’d never had to hide anything. I came out when I was 15, and didn’t really want to be forced back in the closet in my 40s.

So, for my MA, I undertook research on attitudes towards self-disclosure of sexual orientation in social work, because I couldn’t find much in existing literature.

Community Care Magazine did an article on it, which was seen by a Mental Health Peer Worker in Leeds and York Partnership NHS Foundation Trust (LYPFT), Alison O’Connell, who asked me if I would do some research for the Trust on sharing lived experience of mental illness by mental health practitioners.

At the time I said no because I was about to take up a social work job. But when the PhD opportunity came up I got back in touch with Alison, suggesting this would be a great research subject and an opportunity to make a constructive contribution to mental health practice. So that’s how it happened. That social work placement supervisor did me a favour in a roundabout way!

How did you arrive at your research questions?

The research questions came about through discussion with LYPFT, Alison, the service user researcher group, and reading around the existing literature on the subject. We decided we wanted to find out some key things:

• Was there a difference between service users and practitioners in how they viewed the helpfulness of sharing lived experience of mental illness?
• Did views towards sharing experience of mental illness differ to sharing experience of other identities or experiences?
• Did the job role of the person making the disclosure made a difference? Would it be more helpful, for example, for a doctor to share lived experience compared to a nurse or a peer worker?

How did you conduct your research?

We chose to do a survey because it was a practical and cost-effective way of reaching a lot of service users and practitioners. We wanted to be able to generalise results, so we aimed to gain both quantitative and qualitative data from a reasonable proportion of the workforce and service user population.

We also undertook a smaller parallel study in Australia, to gain an international perspective.

What were your findings?

We had hundreds of responses from service users and practitioners, and we explored some of the emergent themes in follow-up focus groups.

Respondents expressed concerns about sharing lived experience, not just about mental health, but a range of other identities and experiences. They were concerned that sharing could go wrong, resulting in damaging outcomes for both the service user and the practitioner.

Despite these concerns, service users tended to rate disclosure as being helpful, more so than practitioners rated it. It could be particularly powerful when the disclosure came from a doctor or a nurse, rather than from a peer worker, from whom disclosure is routinely expected.

Practitioners and service users gave almost 500 examples of real-life disclosures, including about experiences of mental illness, and they were almost exclusively positive.

Jonny Lovell

Practitioners mostly shared less risky information about hobbies and activities, which could be helpful for service users. However, these were not as helpful as disclosures about mental health, which were most valued by service users because they could help reduce stigma, promote discussion, build relationships and trust, and communicate coping strategies.

What are the implications of your findings for practitioners and service users?

Despite some reticence, disclosure tends to go well. There is a lot of lived experience of mental illness in the mental health workforce. Practitioners and organisations should ensure that practitioners are able to be open about their lived experience, and not feel pressured into concealing it by workplace cultures or fear of risk.

What have you learnt through the process of conducting practice research?

Conducting practice research is important. Long standing assumptions and ways of doing things can be scrutinised and challenged, and this can ultimately help service users, practitioners, and organisations to work together more effectively. Going through the process of practice research can be daunting, but it is also very rewarding.

This research gave rise to new training and guidance that has been adopted in LYPFT, and shared nationally at conferences and with trainee social workers, and it feels like it has had a positive impact.

You can read more about Jonny’s research in Chapter 30: Sharing lived experiences in mental health services. His full PhD thesis can be downloaded by clicking here.