Sharing Lived Experience in Mental Health Interventions. Jonny Lovell University of York November 2017

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1 Sharing Lived Experience in Mental Health Interventions Jonny Lovell University of York November 2017

2 Process Overview Policy and practice impact Issue identified by LYPFT Sharing lived experience by peer workers inherently beneficial. Why not other mental health professionals? Research conducted and analysed Research questions and approach Approached University of York Previous research in community care magazine about social workers use of self-disclosure

3 Survey Questions 1. Real life examples. 2. Is mental health lived experience the most helpful type disclosure? Rated 7 types of disclosure: Personal mental health, mental health of family member or friend, religion, physical health, difficult or traumatic experiences, hobbies and out of work experiences, sexual orientation. 5 point scale, 1 unhelpful, 5 helpful. 3. Is mental health disclosure seen as more or less helpful depending on who does it, for example, doctors, nurses, peer mentors, occupational therapists etc? 5 point scale 4. Explored issues in focus groups particularly risk vs benefits of disclosure, and job roles

4 Analysis Statistical analysis of quantitative responses Qualitative analysis. Coded written responses according to various criteria, including: whether statements were positive or negative whether they contained mediating statements such as sharing lived experience might be helpful if done in this way or unhelpful if done in that way.

5 Problems: Pressure, Process, Consent and Capacity Research proposal was well received by service user groups (Leeds Researchers, University of York Service User and Carer Participation Advisory Group), however several complaints were received regarding: Practitioner concern that they may be at risk if a service user mentioned poor or inappropriate disclosures they had made and named them. Links to research finding: practice on sharing lived experience was influenced by fear of repercussions from service users (misusing information) and staff (negative judgements). Placed pressure on practitioners to either (a) not disclose, or (b) conceal disclosure practice. Patients being contacted who would prefer not to have been contacted, or who were concerned about how the research team had obtained their details. This raised issues about consent. Common in other areas of research, not just LYPFT. Contacting patients with dementia who were unable to complete the survey. Raised issues about capacity.

6 Key findings Most practitioners had shared something about themselves with service users (not necessarily mental health experiences) Although service users found mental health disclosures most helpful, they were shared least often Service users rated sharing mental health information as helpful by all types of practitioner. Practitioners only rated sharing by peer workers as helpful.

7 Key findings Many benefits associated with disclosure, but also many risks (similar to previous non-mental health self-disclosure research, but specific to context) Practitioners shared hobbies & activities most often, because it was seen as easier and less risky. This was the only type of disclosure service users rated as less helpful than practitioners. Risk increased with practitioner responsibility and authority, with doctors at the top. May be related to beliefs about professional codes of conduct & ethics.

8 Boundaries and professionalism Reviewed major codes of conduct, ethics and practice for most mental health roles (psychiatrist, nurse, social worker etc.) Usually do not mention disclosure Where they mention disclosure, stress disclosure management, not avoidance However all emphasise: Fitness to practice: importance of awareness of own mental health, and how it could affect practice Boundaries May convey implicit message that disclosure of mental illness could be a dangerous to perceived competency and a boundary violation.

9 Risk of non-disclosure Non-disclosure might help to avoid risk, BUT May remove some risks, but also removes many benefits of disclosure. May not be effective in reducing risk because: It might not be possible. Service users often know all kinds of things about practitioners that they have not disclosed. Many examples given of unavoidable disclosures (religion, pregnancy, being seen using services, being known in a community). It doesn t necessarily protect practitioners. Practitioners gave examples of information that service uses had made up about them, in the absence of real information. Can create its own risk.

10 Risk of non-disclosure Spoke about benefits of disclosure but also the negative impacts of non-disclosure and lack of connection with practitioner: Spoke about 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. Health professional didn t help, I talked to the consumers that s why I m alive today.

11 Key finding: mediating factors Practitioners who rated disclosure as helpful mentioned mediating factors much more frequently than those who rated disclosures as unhelpful. Same pattern across all 7 types of disclosure. Suggests practitioners who see disclosure as unhelpful are less reflective than those who rate disclosure as helpful.

12 Quandary 311 respondents. 7 focus groups. 493 examples given; 46 about personal mental health experiences; from service users and practitioners. Almost exclusively positive. Very few negative. Most negative examples low-key. Wider literature either says disclosure is mostly helpful or neutral, rarely unhelpful Large scale campaigns, e.g. Time to Change, Time to Talk encourage efforts to reduce stigma & talk openly about mental health Organisations increasingly make positive statements and take actions to encourage recruitment and involvement of people with lived experience

13 Quandary Mental illness in mental health workforce is probably higher than general public Nothing in codes of conduct to explicitly deter disclosure But there is still a reluctance for practitioners to be open about their own experiences with colleagues and service users. How is non-disclosing culture perpetuated?

14 Perpetuation of non-disclosing culture Norm circle theory (Elder-Vass). Imagined versus real situation. Belief: colleagues do not disclose; do not have lived experience; disclosure discouraged by codes of professional conduct/ethics. Effect: Conceal illness, conceal disclosure, perpetuate status quo. Covariation theory (adapted from Kelley, 1973). Belief: mental illness repetitive, inescapable, affects minority. Associated with instability, incompetence, absence from work. Effect: conceal illness, perpetuate stigma.

15 Some service users may think:

16 Reality is more like this:

17 Suggestions for future action Alignment: of what really happens in practice re. mental illness prevalence & disclosure vs. what people think happens. Visibility: Greater visibility and openness: mental illness is common; not restricted to certain groups of people; exists in the workforce; people with lived experience can be reliable, competent, and credible; disclosure is mainly positive and helpful; negative, damaging disclosures are rare. Multiple level action: not just large scale campaigns which have a limited effect (Haghighat). Includes policy and practice development.

18 Policy and practice impact Findings being disseminated through: Social work BA & MA, University of York Think Ahead mental health social work training programme Conferences (LYPFT Research Forum; 5th Health & Justice Summit November 2017) And influencing LYPFT policy and practice

19 Influencing LYPFT policy and practice C-0007 Making the most of therapeutic relationships whilst maintaining boundaries guidance for all staff effective from 20/10/16, to be reviewed 19/10/19 Utilising the research findings to develop a training package with a decision making framework to support the implementation of the above policy with a small group of clinicians. Six 3 hour training pilot delivered in October 2017 within LYPFT; advertised via Staffnet. 80 potential training places available, actual number received = 12.

20 Average Score (11 sets of data) Influencing LYPFT policy and practice - continued Sharing Lived Experiences training feedback Pre-training Post-training 1 0 Competence Relevance Comfort Confidence Preparedness Supervision Training area

21 Influencing LYPFT policy and practice - continued What was good/most helpful? Good handouts and knowledge base Really useful, more please! All content in the session was helpful and informative All aspects were helpful well-presented and clearly defined Framework for disclosure was most helpful Having a framework to take away and use presenters were honest and I felt valued All of the discussions that took place were helpful Discussion points in groups sharing each other s experience was great All of it was great! It s very informative and well worth attending The open discussion as a group was most helpful for me Group discussions were very helpful, it was useful to hear other people s experiences, even if they were negative

22 Influencing LYPFT policy and practice - continued What could be improved? Make mental health learning the focus Role play would be a good idea Would be good if it could be a bit longer, to explore more scenarios Making it part of mandatory training Possible clarification on policy Further literature to read about disclosures Maybe more time Remove the specific example as I felt like we talked about this already Roll out the training and make it mandatory!

23 Influencing LYPFT policy and practice - continued What next Respond to feedback received. Utilise ilearn as a medium to manage training places over 2018; providing six learning opportunities across the Trust. Continue to gather training data and six month post training to monitor impact. Share with other organisations; the Recovery & Outcomes group within forensic provider services, Releasing potential: Higher Education sector s contribution to adult and young people s mental health, York St Johns University, York - June 12 and 13, 2018

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