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Reconstruction of the Self following traumatic brain injury:

opportunities and challenges.

Dr Louise Conneeley

Senior Lecturer in Occupational Therapy

Coventry University

l.conneeley@coventry.ac.uk

Aims of the presentation

Raise awareness of issues of life-course disruption, personal identity, status and reconstruction

Aim is to prompt reflection

- personal reflection

- reflections on practice

May result in more questions than answers!

Session outline

Understanding the Self

Self awareness, self consciousness and consciousness of self

Life-course disruption

Identity

Status

Reconstructing self

Relevance for practice?

Session outline

Interactive

Integration of literature

Research findings

Practice

Current context

Understanding ‘Self’

Who am I?

How do you define yourself

What is involved?

Understanding self

Composed of different facets (Jones et al 2011)

Contextually dependent

Shaped by social world

Dynamic, not static (Gelech & Desjardins 2011)

But also involves a stable core (Muenchberger et al

2008) egocentric aspects (Gelech & Desjardins 2011)

Normally unconscious, not consciously defined

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Self and conscious experience

Experience of ‘self’ is central to conscious experience

Part of conscious awareness

Includes self recognition

Awareness of awareness

Self-knowledge (see Zeman 2001)

Conscious experience and the ‘self’

‘Lostness in space and to himself as a space expressed itself in frustration and denial as well. In mental ‘places’ where Erik had previously felt at home – as, for example, in working algebra equations, mastering geometry, or solving calculus.. – he now wandered in confusion as he tried to find his way. Often he erupted in anger against his speech therapist, who doubled as maths tutor, denying vehemently that he was no longer at home in his computational house. Who was he if his former abilities and means of experimenting in and with his world were so compromised?’ (extract Johansen 2002 p129)

Life-course and disruption

Life-course, plan

Set of beliefs/assumptions which we hold about our life plan

Some events not anticipated

Potential threat to self-identity

People have capacity to respond, re-order, construct new plans but

Basic taken for granted assumptions still required (Exley & Letherby 2001)

Information and planning

‘The trouble with this problem is that no-one can say to you, in a year’s time he will be X,Y or Z. The psychologist, with all their years of experience, they might be able to think of something apart from Oh, It’s early days yet and everyone’s different. I know it’s true, it takes time, I know it sounds silly but all we really want to know is he’ll be 99%, or he’ll be, - if it doesn’t come back, then we’ll have to learn to live with it but it would be nice to have some idea, which is one of the things they can’t supply you with’

Life-course disruption and self-identity

Disrupted life-course: a challenge to self-identity

Person with injury

Close relatives/others

‘I found going to work very supportive, because I had been dreading it. But it was lovely. I felt surrounded by love and support and people who I realised knew me apart from this trauma. All the care I’d received from everyone, everyone was relating to me in relation to this patient’

Social and personal identities

The self is defined by inner aspects of self and relationships with the social world (Gelech and Desjardins 2011)

Social reality (Ellis-Hill et al 2008)

Collective experience of the injury experience:

recognising significant others during the ‘movement of the selves’ (Gelech & Desjardins 2011)

Brain injury can challenge the basic sense of self, on a social level as well as the ‘stable core’

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Altered sense of self – egocentric?

‘I do think differently. It’s strange, but true. I don’t know, just a sense that there’s something not quite right as such. Some of my mates think I’m normal, but I’m not. There’s normal and there’s Don normal. How I see Don at the moment, there’s the human race and there’s Don, going OOOhhh, OOhhh, I’m in no man’s land. I just float round. It’s quite good sometimes’

Egocentric attributes

Hard to articulate

Recur through research (Gelech & Desjardins

2011, Muenchberger et al 2008)

Often seen as negative ‘lost the old me’

Don is not sounding totally negative but things have changed, the ‘self’ experienced differently

Impact of altered body on experience of self?

Altered body, a challenge?

‘I’ve always been a keen cyclist, very keen cyclist’….. ‘very important, I generally went out with my friends,… I had friends with the same interests as I had, we all enjoyed cycling’

Altered physical status has capacity to interfere with valued activities and social relationships

Co-occupation and identity (Pickens & Pizur-Barekow 2009)

Physical status, the body is integral to ability to maintain a coherent sense of self? (Giddens 1991, Mattingly 1998)

Altered body: challenge to ‘status’? I went there [college] for nearly 2 years before my

accident , and all the people in wheelchairs, everywhere they went, people, looking…..’

‘……Everyone says, you were there before, it won’t be any different. And I say, I know, but now I’m in a wheelchair, it’s not quite the same, …’

‘Now they have got disabled things attached to the college…like the incapacitated people’s ramp’

Status? Master Status? (Exley& Letherby 2001)

Social construction of ‘self’?

The ‘self’ is defined socially and culturally (Gracey et al 2008)

Work status?

Work often priority in goals of young adults (16-65) in neurological rehabilitation

The ‘self’ framed in terms of work, employment, gives status, sense of personal identity

‘I’m a carpenter and joiner, and no-one can take that away from me’

Social construction of self?

‘I don’t feel like I did about myself when I didn’t have this incapacity. I don’t feel like I used to be, I feel, if you like, like a lesser person than I used to be because I used to be an assistant general manger. So of course, I was involved in lots and lots of things all of the time. So now things are different. So I don’t feel the same as I used to. A bit like a second class citizen because I’m not, I haven’t got the abilities, the capabilities that I used to have, being involved with everything like I used to be, knowing everything that was going on around me.’

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Social construction?

Disabled people viewed as ‘less’ in some way (Ellis-Hill et al 2008)

Response of others influenced by expectations, stereotypes? (Kirsh 2009)

Identity re-affirmed by response of others (Giddens 1991)

Therapeutic encounters?

Master Status: Head Injured Patient

‘Because I’ve been classed as this head-injured patient, other people approach me and talk to me and I can tell they’re making assumptions about what I can take and what I can’t take, or coming to some conclusions. And sometimes they’re right and sometimes they’re not and I feel like shouting back, Hang On, I’m a normal human being too!’

Affirmation of identity and others

Not clear from data if this response referred to therapists or friends,

How do we relate to patients?

What language is used

How is this used?

Critical reflection on practice can help unpack the subtleties of interactions and the way interactions are used (Fook & Gardner 2007)

Current context

Literature: focus on notions of - disability - impairments - improvements following interventions - outcome evaluation Driven by need to invest limited resources well Assumption: outcome indicators chosen by

‘experts’ reflect areas of greatest importance as perceived by those with brain injury (Levack et al 2010)

Challenges!

Many facets, complex

Different constructs

Impact of trauma on body and altered body

Impact on egocentric attributes of the ‘self’

Impact of significant others, employers, friends on identity, status and sense of self

Societal stereotypes, social stigma (Levack et al

2010)

Opportunities for reconstruction?

How important are these constructs

To the patient, their relatives?

To you as therapist?

How do we know if they have been addressed?

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How important?

Reconstruction of the self requires the feeling of being like a complete individual and being accepted as one by other people (Levack et al 2010)

But is it really important?

If so, what is the process, how does it come about?

And what can we do about it?

Re-evaluation?

‘I thoroughly enjoyed my work. And that’s one of the things about having the accident that has upset me a little bit…. The accident has made me re-look at everything, all that I’m concerned about now is my husband and my son and my sister and that we have a valuable life head of us an a long life ahead of us. As for work, not that important really, lets do the things that are important’

Sense of self, status and life satisfaction?

‘Compare your life before you had the bang [accident] and then compare it now and I’d say Yukk! I’m disabled. Make no bones about being disabled. Until you are disabled you don’t’ know what it’s like, going round in a push chair, being pushed around a store, make no bones about how I am at the moment’

So what are the ‘opportunities?’

Opportunities for therapists?

Interventions aimed to promote personal reconstruction appearing in literature

Levack et al (2010)

- life-thread model (Ellis-Hill et al 2008)

-identity-oriented goal training (McPherson et

al 2009)

- Counselling (Patterson et al 2009)

Understanding discourses

Medical discourses versus empowering repertoires (Cloute et al 2008)

- raise awareness of the discourse (language and construction of language)

- requires positive self-reflection

- can result in awareness of the potential implications of the narratives/discourses adopted in our dealings with others

Collaborative practice, empowering models which encourage move from passivity to pro-active empowered state (Cloute et al 2008, Fook & Gardner 2007, Ellis-hill et al 2009)

Meaningful occupation?

Focus on Meaning in rehabilitation as well as more traditional areas for focus (physical, cognitive etc)

Relevance of the activity in interventions to

- reinforce who I am

- feel part of things

- discussions, questions involving personal

meanings to specific individuals and

contexts (Gracey et al 2008 p643)

Opportunities to explore changed capabilities and new strengths and limitations (Petrella et al 2005)

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Occupational adaptation

Personal reconstruction linked with ‘doing’

‘who I am is intimately and completely intertwined with what I do and how I do it’ (Klinger 2005 p12)

‘I am different therefore I must change my doing’ (p13)

Self-identity work is fundamental to adaptation after brain injury

Get back or move forward

Aims and goals

Expressed often through

‘get back to normal’

What does that mean?

‘you know, walk, talk, get back to work, be normal’

?

‘I struggle daily to do my job and be the person I used to be’ (Levack et al 2010 p996)

Get back or move forward?

Giddens (1991) need to let go of the past in order to grasp new opportunities which crisis can present (p78/9)

‘I don’t see it simply as a question of ‘getting back’, of re-integrating, just getting back to where I was before. The future’s going to be different anyway. It’s a case of saying, in what way is the future going to be different from the past, and are those difference, differences that I have worked out for myself or are those differences somehow being forced upon me that I have to adjust to’

Moving forward

Acceptance of disability?

Retraining skills?

Redefining ‘success’

Revision of personal narratives

‘I am no longer trying to crawl back to my old life… I am now trying to find who I really am and what my life is

about’ (Levack et al p995)

‘I think it’s the best thing that’s every happened because it makes you realise so much really. It makes you appreciate just how good this life is to you because I

survived through it and all that’

Resources?

Coping and moving on can involve - capacity for hope - optimism - spirituality - ability to appreciate success - support, professional and personal - opportunities to experiment and test - meeting others in similar situation (Levack et al 2010)

Evaluation?

No standardised measure to evaluate experience of loss of personal identity or satisfaction with reconstruction of identity

Call for measure to reflect these constructs

Move way from impairment based or functional outcomes

May miss the essence of what is really important (Levack et al 2010)

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Final thoughts

What to use, how, when , where to measure are all recurring questions

Aims and goals?

Maybe the focus should be to enable the

individual to work towards a life with meaning which is consistent with a coherent sense of self?

References and reading

Bear MF, Conners BW, Paradiso MA. 2001. Neuroscience, exploring the brain. 2nd ed .Lippincott, Williams & Wilkins Philadephia USA

Conneeley AL (2001) The impact of rehabilitation for those with severe ttraumatic brain injury: perspectives of the patient, significant other and rehabilitation team. PhD Thesis. Coventry Universtiy

Elder GH & Giele JZ (2009) The craft of life-course research. New York Guilford Press

Ellis-Hill C, Payne S, Ward C (2008) Using stroke to explore the life-thread model: an alternative approach to understanding rehabilitation following acquired disability. Disability and Rehabilitation 30 (2) 150-159

Exley C & Letherby G (2001) Managing a disrupted life-course : Issues of identity and emotion work. Health 5 (1) 112-132

References and reading

Fook J & Gardner F (2007) Practicing critical reflection. A resource handbook. Open University Press Berkshire

Gazzanigga M, Ivy RB. Mangun GR (2002) Cognitive Neuroscience. Biology of the mind. 2nd ed. Chapter 16 The problem of consciousness p654-681. Norton, New York

Gelech JM, Desjardins M (2011): I am many: reconstruction of self following acquired brain injury. Qualitative Health Research 21 (1) 62-74

Giddens A (1991) Modernity and self-identity. Self and society in the late modern age. Polity press. Cambridge

Gracey F, Palmer S, Rous B, Psaila K, Shaw K, O’Dell J, Cope J & Mohamed S. (2008) ‘Feeling a part of things’ Personal construction after brain injury. Neuropsychological rehabilitation 18 (5/6) 627-650

References and reading

Johanen RK (2002) ‘Listening in the Silence, Seeing in the Dark. Reconstructing life after brain injury’. University of California Press . Berkeley Los Angeles

Jones JM, Haslam SA, Jetten J, Wiliams WH, Morris R & Saroyan S (2011). That which doesn’t kills us can make us stronger (and more satisfied with life): The contribution of personal and social changes to well-being after acquired brain injury. Psychology and Health 26 (3) 353-369

Ironside P, Scheckel M, Wessels C, Baily M, Powers S & Seeley D (2003) Experiencing Chronic Illness: co-creating new understandings. Qualitative Health Research 13 (2) 171-183

References and reading

Kirsh, B., Stergiou-Kita, M., Gewurtz, R. (2009). From margins to mainstream: what do we know about work integration for persons with brain injury, mental illness and intellectual disability? Work, 32, 391-415.

Klinger, L. (2005). Occupational Adaptation: Perspectives of people with traumatic brain injury. Journal of Occupational Science, 12(1), 9-16.

Levack WMM, Kayes NM, Fadyl JK (2010) Experiences of recovery and outcome following traumatic brain injury: a metasynthesis of qualitative research. Disability and Rehabilitation 32 (12) 986-999

Mcoll MA, Bickenbach J, Johnson J, Nishihama S, Schumaker M, Smith K & Yelland B (2000) Changes in spiritual beliefs after traumatic disability Arch Phys Med Rehabil 81 June 817-823

References and reading

Mason J & Conneeley L (2012) The meaning of participation in an allotment project for fathers of pre-school children British Journal of Occupational Therapy 75 (5) 1-7

McPherson KM, Kayes N, Weatherall M (2009) A pilot study of self-regulation informed goal setting in people with traumatic brain injury. Clinical Rehabilitation 23 296-309

McPherson KM, Kayes N, Weatherall M (2009) A pilot study of self-regulation informed goal setting in people with traumatic brain injury. Clinical Rehabilitation 23 296-309

Mattingly C (1998) Healing dramas and clinical plots: the narrative nature of experience Cambridge UK. Chamberlain University Press.

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References and reading

Muenchberger H, Kendall E & Neal R (2008) Identity transition following traumatic brain injury: a dynamic process of contraction, expansion and tentative balance. Brain Injury 22 (12) 979-992

Patterson FL & Staton AR, (2009) Adult-acquired traumatic injury: existential implications and clinical considerations. J Mental Health Councel 31, 149-163

Petrella L, McColl M, Krupa T & Johnston J (2005) Returning to productive activities: Perspectives of individuals with long-standing acquired brain injuries. Brain Injury 19(9) 643-655

Pickens ND, Pizur-Barnekow K (2009) Co-occupation: extending the dialogue. Journal of Occupational Science, 16(3), 151-56.

Zeman A (2001) Consciousness. Brain 124 (7) 1263-1289