Louise Conneeley - Self and TBI

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Reconstruction of self following TBI - Opportunities and challenges

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Louise Conneeley - Self and TBI

  1. 1. 9/24/2012 Aims of the presentation Reconstruction of the Self  Raise awareness of issues of life-course following traumatic brain injury: disruption, personal identity, status and opportunities and challenges. reconstruction  Aim is to prompt reflection Dr Louise Conneeley Senior Lecturer in Occupational Therapy - personal reflection Coventry University - reflections on practice l.conneeley@coventry.ac.uk  May result in more questions than answers! Session outline Session outline Understanding the Self  Interactive Self awareness, self consciousness and consciousness of self  Integration of literature Life-course disruption Identity  Research findings Status  Practice Reconstructing self  Current context Relevance for practice? Understanding ‘Self’ Understanding self  Composed of different facets (Jones et al 2011) Who am I?  Contextually dependent  Shaped by social world  Dynamic, not static (Gelech & Desjardins 2011) How do you define yourself  But also involves a stable core (Muenchberger et al 2008) egocentric aspects (Gelech & Desjardins 2011) What is involved?  Normally unconscious, not consciously defined 1
  2. 2. 9/24/2012 Self and conscious experience Conscious experience and the ‘self’ Experience of ‘self’ is central to conscious  ‘Lostness in space and to himself as a space expressed itself in frustration and denial as well. In mental ‘places’ experience where Erik had previously felt at home – as, for example, in working algebra equations, mastering Part of conscious awareness geometry, or solving calculus.. – he now wandered in Includes self recognition confusion as he tried to find his way. Often he erupted in anger against his speech therapist, who doubled as Awareness of awareness maths tutor, denying vehemently that he was no longer at home in his computational house. Who was he if his Self-knowledge former abilities and means of experimenting in and with (see Zeman 2001) his world were so compromised?’ (extract Johansen 2002 p129) Life-course and disruption Information and planning Life-course, plan  ‘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. Set of beliefs/assumptions which we hold The psychologist, with all their years of about our life plan experience, they might be able to think of something apart from Oh, It’s early days yet and Some events not anticipated everyone’s different. I know it’s true, it takes Potential threat to self-identity 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 People have capacity to respond, re-order, come back, then we’ll have to learn to live with construct new plans but it but it would be nice to have some idea, which is one of the things they can’t supply you with’ Basic taken for granted assumptions still required (Exley & Letherby 2001) Life-course disruption and self- Social and personal identities identity Disrupted life-course: a challenge to self-identity  The self is defined by inner aspects of self and Person with injury relationships with the social world (Gelech and Desjardins 2011) Close relatives/others  Social reality (Ellis-Hill et al 2008) ‘I found going to work very supportive, because  Collective experience of the injury experience: I had been dreading it. But it was lovely. I felt surrounded by love and support and people who  recognising significant others during the I realised knew me apart from this trauma. All ‘movement of the selves’ (Gelech & Desjardins 2011) the care I’d received from everyone, everyone  Brain injury can challenge the basic sense of was relating to me in relation to this patient’ self, on a social level as well as the ‘stable core’ 2
  3. 3. 9/24/2012 Altered sense of self – egocentric? Egocentric attributes ‘I do think differently. It’s strange, but  Hard to articulate true. I don’t know, just a sense that there’s something not quite right as such.  Recur through research (Gelech & Desjardins Some of my mates think I’m normal, but 2011, Muenchberger et al 2008) I’m not. There’s normal and there’s Don  Often seen as negative ‘lost the old me’ normal. How I see Don at the moment, there’s the human race and there’s Don,  Don is not sounding totally negative but going OOOhhh, OOhhh, I’m in no man’s things have changed, the ‘self’ land. I just float round. It’s quite good experienced differently sometimes’  Impact of altered body on experience of self? Altered body, a challenge? Altered body: challenge to ‘status’?  I went there [college] for nearly 2 years before my ‘I’ve always been a keen cyclist, very keen accident , and all the people in wheelchairs, everywhere cyclist’….. ‘very important, I generally went out they went, people, looking…..’ with my friends,… I had friends with the same  ‘……Everyone says, you were there before, it won’t be interests as I had, we all enjoyed cycling’ any different. And I say, I know, but now I’m in a Altered physical status has capacity to interfere wheelchair, it’s not quite the same, …’ with valued activities and social relationships Co-occupation and identity (Pickens & Pizur-  ‘Now they have got disabled things attached to the Barekow 2009) college…like the incapacitated people’s ramp’ Physical status, the body is integral to ability to maintain a coherent sense of self? (Giddens  Status? Master Status? (Exley& Letherby 2001) 1991, Mattingly 1998) Social construction of ‘self’? Social construction of self? The ‘self’ is defined socially and culturally (Gracey  ‘I don’t feel like I did about myself when I didn’t have et al 2008) 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 Work status? used to be an assistant general manger. So of course, I Work often priority in goals of young adults (16- was involved in lots and lots of things all of the time. So 65) in neurological rehabilitation 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, The ‘self’ framed in terms of work, employment, I haven’t got the abilities, the capabilities that I used to gives status, sense of personal identity have, being involved with everything like I used to be, ‘I’m a carpenter and joiner, and no-one can take knowing everything that was going on around me.’ that away from me’ 3
  4. 4. 9/24/2012 Master Status: Head Injured Social construction? Patient Disabled people viewed as ‘less’ in some way  ‘Because I’ve been classed as this head- (Ellis-Hill et al 2008) injured patient, other people approach me Response of others influenced by expectations, and talk to me and I can tell they’re stereotypes? (Kirsh 2009) making assumptions about what I can take and what I can’t take, or coming to Identity re-affirmed by response of others some conclusions. And sometimes they’re (Giddens 1991) right and sometimes they’re not and I feel Therapeutic encounters? like shouting back, Hang On, I’m a normal human being too!’ Affirmation of identity and Current context others Not clear from data if this response referred to  Literature: focus on notions of therapists or friends, - disability How do we relate to patients? - impairments - improvements following interventions What language is used - outcome evaluation How is this used?  Driven by need to invest limited resources well Critical reflection on practice can help unpack  Assumption: outcome indicators chosen by the subtleties of interactions and the way ‘experts’ reflect areas of greatest importance as interactions are used (Fook & Gardner 2007) perceived by those with brain injury (Levack et al 2010) Challenges! Opportunities for reconstruction? Many facets, complex Different constructs Impact of trauma on body and altered body  How important are these constructs Impact on egocentric attributes of the ‘self’  To the patient, their relatives? Impact of significant others, employers, friends  To you as therapist? on identity, status and sense of self Societal stereotypes, social stigma (Levack et al  How do we know if they have been addressed? 2010) 4
  5. 5. 9/24/2012 How important? Re-evaluation? Reconstruction of the self requires the  ‘I thoroughly enjoyed my work. And that’s one feeling of being like a complete individual of the things about having the accident that has and being accepted as one by other upset me a little bit…. The accident has made me re-look at everything, all that I’m concerned people (Levack et al 2010) about now is my husband and my son and my But is it really important? sister and that we have a valuable life head of If so, what is the process, how does it come us an a long life ahead of us. As for work, not about? that important really, lets do the things that are And what can we do about it? important’ Sense of self, status and life So what are the ‘opportunities?’ satisfaction? ‘Compare your life before you had the  Opportunities for therapists? bang [accident] and then compare it now  Interventions aimed to promote personal and I’d say Yukk! I’m disabled. Make no reconstruction appearing in literature bones about being disabled. Until you are  Levack et al (2010) disabled you don’t’ know what it’s like, going round in a push chair, being pushed - life-thread model (Ellis-Hill et al 2008) around a store, make no bones about how -identity-oriented goal training (McPherson et I am at the moment’ al 2009) - Counselling (Patterson et al 2009) Understanding discourses Meaningful occupation? Medical discourses versus empowering repertoires (Cloute  Focus on Meaning in rehabilitation as well as more et al 2008) traditional areas for focus (physical, cognitive etc) - raise awareness of the discourse (language and  Relevance of the activity in interventions to construction of language) - reinforce who I am - requires positive self-reflection - feel part of things - can result in awareness of the potential implications of - discussions, questions involving personal the narratives/discourses adopted in our dealings with others meanings to specific individuals and Collaborative practice, empowering models which contexts (Gracey et al 2008 p643) encourage move from passivity to pro-active empowered  Opportunities to explore changed capabilities and new state (Cloute et al 2008, Fook & Gardner 2007, Ellis-hill et al 2009) strengths and limitations (Petrella et al 2005) 5
  6. 6. 9/24/2012 Occupational adaptation Get back or move forward Personal reconstruction linked with ‘doing’  Aims and goals ‘who I am is intimately and completely  Expressed often through intertwined with what I do and how I do it’  ‘get back to normal’ (Klinger 2005 p12)  What does that mean? ‘I am different therefore I must change my  ‘you know, walk, talk, get back to work, be doing’ (p13) normal’ Self-identity work is fundamental to adaptation  ? after brain injury  ‘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? Moving forward  Acceptance of disability? Giddens (1991) need to let go of the past in  Retraining skills? order to grasp new opportunities which crisis can present (p78/9)  Redefining ‘success’  Revision of personal narratives ‘I don’t see it simply as a question of ‘getting back’, of re-integrating, just getting back to  ‘I am no longer trying to crawl back to my old life… I am where I was before. The future’s going to be now trying to find who I really am and what my life is different anyway. It’s a case of saying, in what about’ (Levack et al p995) way is the future going to be different from the past, and are those difference, differences that I  ‘I think it’s the best thing that’s every happened because have worked out for myself or are those it makes you realise so much really. It makes you differences somehow being forced upon me that appreciate just how good this life is to you because I I have to adjust to’ survived through it and all that’ Resources? Evaluation? Coping and moving on can involve  No standardised measure to evaluate experience - capacity for hope of loss of personal identity or satisfaction with - optimism reconstruction of identity - spirituality  Call for measure to reflect these constructs - ability to appreciate success - support, professional and personal  Move way from impairment based or functional outcomes - opportunities to experiment and test - meeting others in similar situation (Levack et al  May miss the essence of what is really important 2010) (Levack et al 2010) 6
  7. 7. 9/24/2012 Final thoughts References and reading Bear MF, Conners BW, Paradiso MA. 2001. Neuroscience, What to use, how, when , where to  exploring the brain. 2nd ed .Lippincott, Williams & measure are all recurring questions Wilkins Philadephia USA  Conneeley AL (2001) The impact of rehabilitation for Aims and goals? those with severe ttraumatic brain injury: perspectives of the patient, significant other and rehabilitation team. Maybe the focus should be to enable the PhD Thesis. Coventry Universtiy individual to work towards a life with  Elder GH & Giele JZ (2009) The craft of life-course research. New York Guilford Press meaning which is consistent with a  Ellis-Hill C, Payne S, Ward C (2008) Using stroke to coherent sense of self? 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 References and reading Fook J & Gardner F (2007) Practicing critical reflection. A  Johanen RK (2002) ‘Listening in the Silence, Seeing in resource handbook. Open University Press Berkshire the Dark. Reconstructing life after brain injury’. Gazzanigga M, Ivy RB. Mangun GR (2002) Cognitive University of California Press . Berkeley Los Angeles Neuroscience. Biology of the mind. 2nd ed. Chapter 16  Jones JM, Haslam SA, Jetten J, Wiliams WH, Morris R & The problem of consciousness p654-681. Norton, New Saroyan S (2011). That which doesn’t kills us can make York us stronger (and more satisfied with life): The Gelech JM, Desjardins M (2011): I am many: contribution of personal and social changes to well-being reconstruction of self following acquired brain injury. after acquired brain injury. Psychology and Health 26 (3) Qualitative Health Research 21 (1) 62-74 353-369 Giddens A (1991) Modernity and self-identity. Self and  Ironside P, Scheckel M, Wessels C, Baily M, Powers S & society in the late modern age. Polity press. Cambridge Seeley D (2003) Experiencing Chronic Illness: co- Gracey F, Palmer S, Rous B, Psaila K, Shaw K, O’Dell J, creating new understandings. Qualitative Health Cope J & Mohamed S. (2008) ‘Feeling a part of things’ Research 13 (2) 171-183 Personal construction after brain injury. Neuropsychological rehabilitation 18 (5/6) 627-650 References and reading References and reading Kirsh, B., Stergiou-Kita, M., Gewurtz, R. (2009). From  Mason J & Conneeley L (2012) The meaning of margins to mainstream: what do we know about work participation in an allotment project for fathers of pre- integration for persons with brain injury, mental illness school children British Journal of Occupational Therapy and intellectual disability? Work, 32, 391-415. 75 (5) 1-7 Klinger, L. (2005). Occupational Adaptation: Perspectives  McPherson KM, Kayes N, Weatherall M (2009) A pilot of people with traumatic brain injury. Journal of study of self-regulation informed goal setting in people Occupational Science, 12(1), 9-16. with traumatic brain injury. Clinical Rehabilitation 23 Levack WMM, Kayes NM, Fadyl JK (2010) Experiences of 296-309 recovery and outcome following traumatic brain injury: a  McPherson KM, Kayes N, Weatherall M (2009) A pilot metasynthesis of qualitative research. Disability and study of self-regulation informed goal setting in people Rehabilitation 32 (12) 986-999 with traumatic brain injury. Clinical Rehabilitation 23 Mcoll MA, Bickenbach J, Johnson J, Nishihama S, 296-309 Schumaker M, Smith K & Yelland B (2000) Changes in  Mattingly C (1998) Healing dramas and clinical plots: the spiritual beliefs after traumatic disability Arch Phys Med narrative nature of experience Cambridge UK. Rehabil 81 June 817-823 Chamberlain University Press. 7
  8. 8. 9/24/2012 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 8

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