Outline 1. Position statements on the support of recovery Working to - - PowerPoint PPT Presentation

Working to support 'Personal recovery': - The case of personality disorder

Andrew Shepherd - NIHR Doctoral Research Fellow (UoM and GMW Mental Health), Higher Trainee in Forensic Psychiatry

Outline

• 1. Position statements on the support of ‘recovery’
• 2. Historical context
• 3. Definitions of ‘recovery’
• 4. Problems
• 5. Working to understand recovery in different contexts
• 6. Findings
• 7. Moving forward

Personal Recovery

Support of ‘personal recovery’ now defined as goal of modern NHS mental health services; with substantial resource investment (e.g REFOCUS collaboration): “New Horizons sets out the expectation that services to treat and care for people with mental health problems will be accessible
 to all who need them, based on the best available evidence and focused on recovery, as defined in discussion with the service
 user.”

New Horizons. A Shared Vision for Mental Health (2009). Department of Health London.

Historical context

Recovery as ‘cure’ Enlightenment concept, notion

• f distress as ‘disease’ in need
• f cure and treatment (c.f

Various accounts for development of this mode of thinking Foucault, Lieberman, Scull) Recovery as survival of invalidation Emergence of ‘recovery movement’ during process of

• deinstitutionalisation. Need for

space for ‘the mad’ in society (c.f disability rights movement)

Defining recovery

“a way of living a satisfying, hopeful, and contributing life even with limitations caused by illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects

• f mental illness.” (Anthony 1993, p527)

“The goal of the recovery process is not to become

• normal. The goal is to embrace our human vocation of

becoming more deeply, more fully human. The goal is not normalization. The goal is to become the unique, awesome, never to be repeated human being that we are called to be.” (Deegan 1996, p92)

Researching recovery

e.g REFOCUS intervention (Slade et

• al. 2015)

Recovery conceptual framework - CHIME(S) (Leamy, Bird et al 2011)

• 1. Connectedness
• 2. Hope
• 3. Identity
• 4. Meaning
• 5. Empowerment
• 6. Spirituality

Problems?

Recovery still requires greater conceptual clarity if it is to be implemented in clinical practice. Argument: - Greater understanding can be gained by considering marginal, liminal, states Example: - Personality disorder represents a complex experience with varying clinical conceptualisations and understanding by professionals. Claimed prevalence of PD within forensic institutions raises this complexity further. Aim:- To explore lived experience of recovery in personality disorder as described by individuals accessing care in both community and forensic institutional settings. To develop understanding of the enactment of recovery orientated care by practitioners in these contexts

Working to understand recovery in different contexts

Systematic review Conducted with aim of surveying existing literature in relation to understanding of recovery in personality disorder and within forensic institutions. Providing sensitisation to existing practical and theoretical literature, while allowing development of framework understanding. (Shepherd, Doyle, Sanders & Shaw 2016a, b)

Individual interview phase

• 1. Recruitment strategy
• 41 participants (21 Forensic and 20 Community)
• Majority women (n=23 total, 13 in Forensic settings)
• Mixed inpatient, prison, approved accommodation, community mental health team care settings
• Not diagnosis specific: - ‘as if’ one had a personality disorder of any type
• Targeting varying clinical settings, length of contact with services etc responding to emergent

findings

• 2. Interview conduct
• Semi-structured, but with intent of supporting elaboration of participant narrative
• 3. Analysis
• Epistemology - Situational constructivist approach
• Importance in considering reflexivity

Focus group interviews

• 1. Recruitment strategy
• 7 groups (30 participants)
• Homogeneous in membership (clinical

teams accustomed to working together)

• 2. Interview conduct
• Semi-structured with initial elaboration
• f understanding of personal recovery

before moving on to address individual interview themes

• 3. Analysis
• Situational constructivist
• Again considering reflexivity from role of

conductor

Findings - Recovery as a process of identity work

Making sense of experience and the embodiment of distress Participant narratives were replete with descriptions of childhood abuse, isolation, dislocation from their environment: “I had a lot of depression and down days, when I think back now just not fitting in even the foods that I liked were totally different I had nothing in common with the family that I lived with and brought up with. Not in the food, nothing.” Means of communicating distress were presented as response to inability to communicate through other means: “…to me it just felt like, everything did stop, and it just felt like a relief really. (Int: A relief of what?) Stopping all the pressure building up inside me and all the emotions that I didn't know what to do with… I didn't know how to express them in other ways, so by self-harming it kind of released those emotions and I guess in a way I was able to, after I’d done it, sort of take care of myself, in a way, in a way that I would normally never do.”

Diagnosis as representing ideas

• f understanding and hope
• 1. Diagnosis as normalisation leading to

a hope for treatment “They gave me the diagnosis of emotionally unstable personality disorder. So I was put on, obviously, several antipsychotic drugs and antidepressants which were linked with an anti-anxiety as well and I started going to a hearing voices group, which was near where I lived, so that made things a lot easier knowing that I was with like-minded people.”

• 2. Diagnosis as problematic

“I got the understanding that people don't trust it [diagnosis] , or they say it’s a cop out, but I don't care about it, I know I’m ill, I know the things I’ve done, I know I wouldn't be in this service if there was nothing wrong with me…”

• 3. Moral contextualisation

“…if I don’t believe that I’m ill, if I can't believe that this is an illness, and even personality disorder, if I can’t believe it’s an illness then it makes it even worse. Because it makes it that, I’m doing this to myself. That for some reason I can’t control the way I feel and if it’s not an illness then, then I’m a really, really seriously bad person.”

Recovery and its social contextualisation

“…I’m worried about going home, because people will remember psycho-Samantha, people will remember the Samantha who didn't give a shit… the Samantha who’d do anything for anyone… I’m not that Samantha no more… I’ve really changed and I’m worried about if they’d let me be this person…”

Professional understanding

• f recovery

Clinical support as a process of emotional labour Professional accounts of the therapeutic process indicated that they too underwent an intense experience of emotional labour in working with this client group. This led to complex descriptions wherein different professionals sought to make distinction between concepts of ‘support’ versus ‘dependence’.

Professional understanding

• f recovery

Diagnostic uncertainty and the risk of stigmatisation Treatment options were often primarily seen as being driven by psychopharmacological approaches. Apparent failure to respond to these medications led to ideas of ‘un- treatability’ and a desire to exclude individuals from clinical care. Overall these were perceived as challenging individuals to work with, placing a great deal of strain on professionals The need for clinical supervision Supervision was identified as an important means of addressing these difficulties. Providing a manner in which the emotional process, and uncertainty, could be addressed. Supervision was increasingly seen as dominated by non-clinical material however. Supervision was also a restricted resource, squeezed out in a time of budget and resource constraint.

Moving forward - Recovery

Recovery as a social process of identity work

• How do we incorporate this understanding to develop adequate

therapeutic spaces (c.f Nidotherapy - Tyrer, 2008)?

• How do we capture the dynamic of social networks and their role in the

process (c.f Open Dialogue approaches - Aaltonen et al 2011, Seikkula et al 2011)?

• How do we gauge this process through audit or empirical research?

“Once being ‘in recovery’ is under-stood as living a meaningful and self- determined life in the community in the face of an enduring mental illness, it becomes obvious that this requires as much of a change in the community as it does in the person with the illness.” (p306, Davidson, 2008)

Moving forward - Recovery & professional roles

Professionals occupy a powerful position in their ability to support the process and offer hope

• Particular to personality disorder - stigma and misunderstanding are

recognised as persisting and this risks potential exclusion and jeopardising of recovery

• The ability of professionals to offer a reflective space and therapeutic

relationship is valued by patients.

• This represents a process of emotional labour on the part of practitioners

A supervisory process is believed to be necessary to allow full engagement with this process; but this is a restricted resource for many practitioners

Moving forward - future research

• 1. How is the process of recovery enacted within

therapeutic spaces? Need for observational studies, ethnography (c.f Pilgrim, 2009)

• 2. How does the concept of recovery impact on our

understanding of the therapeutic relationship? (e.g Shared Decision Making - Barry, 2012)

• 3. What measures can be used to capture recovery

processes within the empirical framework of evidence based practice? (e.g Individualised Outcome Measures, Pesola et al. 2015)

Acknowledgements

With thanks to my supervisors at the University of Manchester - Caroline Sanders and Jenny Shaw. Community recruitment was supported by the NIHR clinical research network team. Participating NHS trusts included MMHSC, GMW and Lancashire Care. I am funded through an NIHR Doctoral Research Fellowship

• award. The views expressed herein are those of the author

and not necessarily representative of those of the NIHR, or DoH, UK.

Questions?

Aaltonen, J., Seikkula, J., & Lehtinen, K. (2011). The Comprehensive Open-Dialogue Approach in Western Lapland: I. The incidence of non-affective psychosis and prodromal states. Psychosis, 3(3), 179–191. http://doi.org/10.1080/17522439.2011.601750 Barry, M. J., & Edgman-Levitan, S. (2012). Shared decision making--pinnacle of patient-centered care. N Engl J Med, 366(9), 780–781. http://doi.org/10.1056/NEJMp1109283 Foucault, M. (2001). Madness and Civilization. (R. Howard, Trans.) (2nd ed.). Taylor & Francis. Leamy, M., Bird, V., Le Boutillier, C., Williams, J., & Slade, M. (2011). Conceptual framework for personal recovery in mental health: systematic review and narrative synthesis. The British Journal of Psychiatry, 199(6), 445–452. http://doi.org/10.1192/bjp.bp.110.083733 Lieberman, J. A., & Ogas, O. (2015). Shrinks: The Untold Story of Psychiatry. Orion. Pesola, F., Williams, J., Bird, V., Freidl, M., Le Boutillier, C., Leamy, M., et al. (2015). Development and evaluation of an Individualized Outcome Measure (IOM) for randomized controlled trials in mental health. International Journal of Methods in Psychiatric Research, 24(4), 257–265. http://doi.org/10.1002/mpr.1480 Pilgrim, D. (2009). Recovery From Mental Health Problems: Scratching The Surface Without Ethnography. Journal of Social Work Practice, 23(4), 475–487. http://doi.org/10.1080/02650530903375033 Scull, A. (2015). Madness in Civilization: A Cultural History of Insanity, from the Bible to Freud, from the Madhouse to Modern

• Medicine. Princeton University Press.

Seikkula, J., Alakare, B., & Aaltonen, J. (2011). The Comprehensive Open-Dialogue Approach in Western Lapland: II. Long-term stability of acute psychosis outcomes in advanced community care. Psychosis, 3(3), 192–204. http://doi.org/ 10.1080/17522439.2011.595819 Shepherd, A., Sanders, C., Doyle, M., & Shaw, J. (2016). Personal recovery in personality disorder: Systematic review and meta- synthesis of qualitative methods studies. The International Journal of Social Psychiatry, 62(1), 41–50. http://doi.org/ 10.1177/0020764015589133 Shepherd, A., Doyle, M., Sanders, C., & Shaw, J. (2016). Personal recovery within forensic settings - Systematic review and meta- synthesis of qualitative methods studies. Criminal Behaviour and Mental Health : CBMH, 26(1), 59–75. http://doi.org/10.1002/cbm.1966 Slade, M., Bird, V., Le Boutillier, C., Farkas, M., Grey, B., Larsen, J., et al. (2015). Development of the REFOCUS intervention to increase mental health team support for personal recovery. The British Journal of Psychiatry, 207(6), 544–550. http://doi.org/10.1192/ bjp.bp.114.155978 Tyrer, P. (2008). Nidotherapy: a new approach to the treatment of personality disorder. Acta Psychiatrica Scandinavica, 105(6), 469– 471.