SHARING LIVED EXPERIENCE IN MENTAL HEALTH SETTINGS
It has long been a matter of controversy whether it is ok for mental health practitioners to be open with service users about their own mental health experiences. This research was undertaken to explore the subject in more depth, and find out what mental health practitioners and service users thought about the topic.
Between 2013 and 2017 research was undertaken to find out whether mental health service-users and practitioners thought it was helpful for practitioners to be open about their own mental health experiences. Talking about personal experiences with others is often referred to as ‘self-disclosure’ or ‘sharing lived experience.’ This report uses the term ‘sharing lived experience’ as it was preferred by service-users when they were consulted about this research.
Some practitioners in NHS mental health trusts said it was controversial for them to share their experience of mental illness with service-users. In contrast, peer support workers were expected to share their experiences with service-users as part of their role. Previous research has suggested that sharing experiences by peer workers may help to normalise service-users’ experiences, promote recovery, and reduce the stigma associated with mental illness. Practitioners wondered whether there might be similar benefits if other mental health practitioners, such as doctors, nurses and social workers, shared their experiences too.
This research was undertaken by the University of York and Leeds and York Partnership NHS Foundation Trust (LYPFT). It asked service-users and practitioners whether they thought it was helpful or unhelpful for practitioners to share their experiences of mental illness with service-users, and why.
HOW THE RESEARCH WAS UNDERTAKEN
In 2014, surveys were sent out to LYPFT service-users and practitioners. The surveys asked participants to:
Give examples of things that practitioners had shared with service-users, and in what ways these were helpful or unhelpful.
Rate the helpfulness of seven different types of disclosure including: personal mental health; difficult or traumatic experiences; the mental health of a family member or friend; physical health or disability; religion; sexual orientation; and hobbies and out of work experiences. They were also asked to say why they gave the rating they gave.
Rate how helpful it is for different practitioners to share their mental health lived experience, including: nurses; social workers; counsellors; psychologists or psychotherapists; occupational health workers or physiotherapists; doctors; peer support workers; health care assistants; and non-clinical staff (such as cleaners or administrators).
Small group discussions were held with some service-users and practitioners to discuss what people said in the surveys, and to explore some of the issues raised in more detail. The feedback from participants was shared with practitioners and service-users in a similar mental health organisation in Australia (NorthWestern Mental Health. Melbourne), to find out whether the findings were unique to the UK.
Service-users at LYPFT were consulted about the research before it took place. This helped the researchers to choose the most suitable research methods. Several service-users were also involved in helping to undertake the research, facilitate group discussions, and analyse the results.
What was found
1. Sharing lived experience tended to go well in real life, but practitioners and service uses had concerns about it being done.
Most practitioners had shared something about themselves with service-users, but not necessarily mental health experiences.
There was most controversy when respondents rated the seven types of things that a practitioner might share. They gave lots of information about potential benefits, but also mentioned a lot of potential risks.
In contrast, when they gave real life examples of previous disclosures, they tended to go well. Service-users and practitioners gave 493 examples of real life disclosures. 46 of these were about practitioners sharing their personal mental health experiences. They were almost exclusively positive. Very few were negative, and most of the negative examples low-level.
Previous research has also indicated 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.
2. Sharing mental health experiences was the most helpful-rated topic, but other types of experience and identity could be helpful to different people for different reasons.
Service-users indicated that personal mental health experiences were the most helpful type of information that practitioners could share with them. It was helpful because it could reduce stigma and feelings of isolation, promote recovery and hope for the future, and allow practitioners to share coping techniques. However, mental health experiences were shared least often compared to other types of information.
The most common kind of information that practitioners shared was about their hobbies and out of work experiences. Both service-users and practitioners felt that sharing information about interests and activities could help build relationships and get people talking. Service-users thought sharing this kind of information could be helpful, but they thought it was less helpful than practitioners did.
Many service-users found sharing different types of information could be useful. For example, sharing information about physical health or disability could help someone to manage a similar condition, understand a practitioner’s physical limitations, or explain work absence. Sharing religion or sexual orientation could help people to have conversations about shared beliefs, identities, or struggles.
Service-users rated most types of sharing as more helpful than practitioners did. This might indicate that some practitioners are less aware of how important and helpful such conversations can be for service-users.
3. Sharing mental health experiences can be helpful from all kinds of practitioner, not just peer workers.
As a group, service-users thought it was helpful for all types of clinician to share information about their personal mental health experiences. This included doctors, nurses, social workers, psychologists, psychotherapists, occupational health workers, physiotherapists, peer workers, and health care assistants. As a group, practitioners only rated the sharing of mental health experiences as helpful when shared by peer workers. Of course, within these groups, some individuals did not think in this way.
4. Weighing up benefits and risks
Practitioners and service-users mentioned many benefits of disclosure but also many risks. This was similar to findings from previous non-mental health self-disclosure research.
Benefits of sharing lived experience were that many service-users valued it. It could help to reduce barriers and build therapeutic relationships. I could help to reduce stigma and normalise service-users’ experiences. It enabled the promotion of recovery and sharing of coping mechanisms. It could also increase practitioner credibility.
Both service-users and practitioner also mentioned many potential risks. Not every service-user wanted disclosure. Disclosure could be seen as unprofessional by service-users and/or colleagues. It could create barriers or damage therapeutic relationship, for example, where clumsy comparisons of illness were made, or where disclosure shifted focus away from service-users. It might burden service-users with the practitioner’s problems, and cause them worry about continuity of treatment. Disclosure could also be seen as a slippery slope, with practitioners not knowing where to stop. Not least, there was some concern that service-users might use information against the practitioner or share it with others.
Practitioners shared hobbies and activities most often, because it was seen as easier and less risky to share than other types of more personal information. Risk increased with practitioner responsibility and authority, with doctors at the top of the hierarchy. It was suggested in the focus groups that if a service-user was upset or angry about the treatment they received, they might be more likely to express this towards doctors, who were seen as representative of services, and who would be responsible for decisions about treatment, rather than nurses or peer workers who were seen as having less power. It was also suggested that practitioners who are qualified and registered with a registering body (such as the General Medical Council, or the Health and Care Professions Council) might be at risk of disciplinary action from both their employer, and from their registering body. Peer workers would only be answerable to their employer, who would expect them to share personal experiences anyway.
Sometimes risk was related to beliefs that practitioners should not or could not disclose because it was forbidden in their professional codes of conduct and ethics. A review of the major codes of conduct, ethics and practice for most mental health roles (psychiatrist, nurse, social worker etc.) indicated that most do not mention disclosure. The few that do mention disclosure stress good disclosure management, not avoidance. However, all codes of conduct and ethics emphasise the importance of practitioners being aware of how their own mental health could affect practice, and the importance of maintaining boundaries. This might lead some practitioners to think that disclosure of mental illness experiences could cause others to think they are unfit to practice, and that disclosure could be seen as a boundary violation.
Practitioners who thought sharing experience was helpful tended to consider a wide range of possibly positive and negative effects of disclosing. Practitioners who thought it was unhelpful to share experience tended to only consider negative potential effects and did not consider potential benefits. This might suggest that disclosing practitioners have a more balanced and thorough understanding of disclosure than those who do not disclose, and this might be why most real life examples of sharing went well.
5. Avoiding risk through non-disclosure
To avoid the risks associated with disclosure, some practitioners chose not to disclosure information about themselves to service-users. This had some risks of its own:
Although it non-disclosure might remove some risks, it could also remove many of the benefits of disclosure at the same time.
Non-disclosure may not be possible. Service-users often know all kinds of things about practitioners that they have not disclosed. Many examples given of unavoidable disclosures, including religion, pregnancy, being seen using services, or being known in a community.
Non-disclosure may not protect practitioners from misuse of information. Practitioners gave examples of information that service uses had made up about them, in the absence of real information.
In addition to these drawbacks, some service-users spoke about powerful negative impacts of non-disclosure and subsequent lack of connection with practitioner. They mentioned:
Relationships “completely devoid of human warmth”
Feeling “humiliated… degraded… angry.”
Increased feelings of loneliness, isolation, and stigma.
Feeling increasingly “suicidal, because there was no connection.”
Disengaging from interaction with psychiatrists because of the lack of connection.
In contrast, practitioner disclosure could mark a turning point in some service-users’ recovery:
“I can honestly say that when I was in hospital it wasn’t any health professional that helped, it was the health consumers, just talking to them, and knowing that I wasn’t bad… that’s why I’m alive today. That’s why I feel that it has power if clinicians can share to some extent, no details, but share a little bit.” (Australian consumer)
“the relief when I found out that this fantastic, strong, vibrant woman, sorry I’m becoming quite emotional [crying]. It was just like, you’ve had mental health problems? You mean, I can do it?….it was such a contrast to what I’d been told, or not told, by other services previously…it gave me hope.” (UK service-user)
6. Australia and the UK
Practitioners and service-users in Australia said very similar things to those in the UK regarding the possible benefits and risks of disclosure and non-disclosure. Practitioners reported using disclosure, but sometimes felt that disclosure was a taboo subject, that they could not speak about the topic of disclosure, and often felt explicit or implicit pressure from colleagues not to disclose, particularly from doctors. However, some service-users, who were (or had been) peer workers, also reported pressure against disclosure. This seemed surprising (to both the researchers and the research participants who expressed this), because disclosure is an expected part of the peer worker role. Although negative views about peer worker disclosure were not verbally mentioned in the UK, doctors in the UK rated peer worker disclosure as unhelpful, whereas other practitioners rated this as helpful. It may be that doctors have more pronounced anti-disclosure views than other practitioners, in both the UK and Australia, and this may influence how disclosure is viewed and discussed within mental health teams.
Despite such pressures, some Australian practitioners reported positive examples of services proactively matching service-users to practitioners with similar identities or experiences, either within or outside of their agencies.
Service-users in Australia, like those in the UK, gave examples of where disclosure had been particularly powerful when made by qualified practitioners with higher status and authority. However, in both countries, in the absence of disclosure from any kind of practitioner, some service-users found the connection and disclosure they needed in the voluntary sector, and were critical of
WHAT HAPPENED AS A RESULT OF THIS RESEARCH
LYPFT has reviewed its guidance, and the policy “Making the most of therapeutic relationships whilst maintaining boundaries – guidance for all staff” supports staff to make decisions about what experiences they might share and how they might best share lived experience.
The research findings were used with a small group of clinicians to develop a training package with a decision-making framework to support the implementation of the above policy.
Pilot training sessions were delivered for practitioners in LYPFT in October 2017. Self-evaluations indicated that staff knowledge and confidence around sharing lived experience increased as a result of the training, and comments indicated more information and training would be welcome in future.
Findings have been disseminated at 2 conferences: LYPFT’s Research Forum (Leeds, 09.11.17), and the 5th Health and Justice Summit (Glasgow, 27.11.17). LYPFT will be providing further training opportunities in 2018, will continue to gather information after the delivery of training to monitor impact, and will continue to share learning with other organisations, for example, through relevant conferences.
CONCLUSION AND RECOMMENDATIONS
Previous research and the current research do not indicate that disclosure should be avoided. Disclosure usually has positive or neutral effects, and rarely has negative effects. Nevertheless, some practitioners are reluctant to share their lived experience because they fear negative consequences, either from other practitioners, or from service-users. Since some level of disclosure is unavoidable, it may be helpful for practitioners to be supported in managing disclosure well, rather than trying to avoid it. Non-disclosure can compound feelings of isolation and despair and may cause some service-users to disengage from practitioners and services. Conversely, disclosure can act as a ‘light-bulb’ moment for some service-users, giving them hope for the future, and reducing feelings of loneliness and despondency.
The authors of this paper do not suggest that practitioners should share their lived experience: some do not wish to, and some service-users do not want it. However, many service-users welcome the sharing of lived experience, and many practitioners would like to share. It is recommended that practitioners should be supported to make their own decisions about what, how and why they share their personal lived experiences and identities with service-users. Excellent work has been undertaken in LYPFT to translate the messages from this research into training for practitioners, and other mental health trusts in the UK have been similarly proactive. Nevertheless, there is a need for a culture change in mental health services to support practitioners to use their lived experience in their work and be open about their experiences if they wish.
This research is indebted to the invaluable help and support of:
All the service-users and practitioners who took the time to complete the surveys and attend focus groups in the UK and in Australia. Your input was greatly appreciated and has contributed to one of the largest UK studies on mental health disclosure.
Leeds and York Partnership NHS Foundation Trust, and NorthWestern Mental Health (Melbourne, Australia).
Leeds Researchers, LYPFT’s service-user research group, and the University of York’s Service-user Participation Advisory Group, who gave valuable feedback on the research in its initial stages.
Those service-users who became involved as researchers, and supported this research throughout.
This research report was compiled and distributed later than intended. Thank you for your patience and unwavering support.