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Life Threads and Identity following a Stroke

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Presentation on theme: "Life Threads and Identity following a Stroke"— Presentation transcript:

1 Life Threads and Identity following a Stroke
Dr Caroline Ellis-Hill School of Health and Social Care Bournemouth University Share my own journey into this area Present some of my work and work from others Incorporate the voice of a person following stroke who spoke at a conference earlier in year in UK Highlight the nature of invisible narratives How linked with life changes, sense of self and agency How we can tap into these in practice Stroke –but feel could apply to any acquired physical disability

2 Very often dealing with the visible –in providing services seen mainly as physical challenge to get over /manage -peoples response etc

3 Recnetly more recognition of invisible aspects people go through (deeper water) - I will be talking about this evening Bit my own research etc etc

4 Sudden life change ‘Its a very severe thing to happen to anyone
its not like getting a -you know - having a broken arm or something like that which incapacitates you for a couple of months Put your arm in plaster and normally just take the plaster off and get back to where you were before 1364/1 ... you lead a normal life one day and within a matter of minutes, overnight it all comes to an end ’ 1387/1

5 Fundamental change in life
“Nobody knows I didn’t know that Friday it was just a perfectly ordinary Friday .. just the same routine and it was gone within seconds it was gone your whole life is completely changed within seconds and that’s all it takes with a stroke is seconds one thing and your life is completely different I don’t know, its a strange feeling its the most frightening thing” 1151/2 Huge life change Have to take responsibility for everything in both peoples lives Ellis-Hill and Payne (2001)

6 Life Thread Model Ellis-Hill et al 2008

7 Parallel life threads

8 Life threads frayed Predictable future lost, makes no sense in temr sof their past lives –need to reconfigure their future –work out a new way forward (kearney, 2009)

9 New reality I had entered the strange and new experience which I now know as ‘disability country.’ Of course it is not a different country but it often felt like it ‑ with different names, expectations, conventions and possibilities. McKenzie 1996, p42 She wrote of her experience of being a professional counsellor in a social services setting. She had worked with many people who had an acquired injury, and was considered to be an expert in the field. Following a car crash she said: I had entered the strange and new experience which I now know as ‘disability country.’ Of course it is not a different country but it often felt like it ‑ with different names, expectations, conventions and possibilities. (McKenzie 1996, p42) Although being an ‘expert’ she still found herself in a new foreign land, with foreign discourses and narratives. –PhD

10 Loss of confidence I had not been conscious of loosing it [confidence], but in the period since my stroke it ‘leaked away’. I had become very well adapted to living in an institutional environment and had not experienced many of those small day to day cues that keep you informed that you are an okay ‘normal’ person. Now my unconscious was dominated by a ‘disability outlook’ and a fear of failure in the ‘real’ world. This was nobodies fault. Merely an inevitable consequence of institutionalisation. Cant 1997, p303 This experience was highlighted by Cant (1997) when describing his loss of confidence when considering his return to work following a stroke. I had not been conscious of loosing it [confidence], but in the period since my stroke it ‘leaked away’. I had become very well adapted to living in an institutional environment and had not experienced many of those small day to day cues that keep you informed that you are an okay ‘normal’ person. Now my unconscious was dominated by a ‘disability outlook’ and a fear of failure in the ‘real’ world. This was nobodies fault. Merely an inevitable consequence of institutionalisation. (Cant 1997, p303)

11 Both visible and invisible work
Person and family have to work to develop new physical and social skills and practical ways of being in the world (visible work) This is underpinned and can only take place by creating and re-creating new life threads to guide future plans in life (invisible work) Support sense of personhood and identity

12 Life threads frayed Predictable future lost, makes no sense in temr sof their past lives –need to reconfigure their future –work out a new way forward (kearney, 2009) particularly fluid following a stroke influenced by social interaction can be enhanced by validation of experience through narrative sharing life possibilities can be re-evaluated Recognise that life possibilities are not limited by bodily function

13 Life threads joined See role of nurse to help person connect who they were to who they want to be May be that help person physically improve –observable world May be that help person achieve goals through equipment –adaptations –observable world May be that help person maintain past narratives into the future but in a new way May be that help create new positive narratives re future May be that help person tie off past narratives in way feel right/comfortable for them

14 It can be a difficult journey
Low narrative energy Past – fixed –but not work for you any more May be narratives available for you not wanted –ideas around disability dominate your life –may have negative connotations –not want to take on Physically tired – stroke - tiredenss important but unrecognised Become passive , entered new world which is not yours – ‘unhomelike’ where you do not belong It can be a difficult journey

15 Need support for re-creation –creativity

16 To access own creativity need support to
Have patience Be open-minded Be non- judgemental Be able to be vulnerable Tolerate uncertainty Let down mask to others Focus on process not outcomes/goals Setting Claxton and Lucas (2008) –book 4)p12 creative contexts positive creative environment = creatogenic ; negative creative environment = creatocidal Claxton and Lucas (2008)

17 Van Lith 2010 [People] regarded art making as an activity that they used to change or transform themselves in some way, as opposed to them being passive recipients of services. Using art making as a vehicle to take control, empowered [people], and resulted in them feeling stronger, and more confident [in their life]

18 Creativity Arts for Health –gaining recognition
London Arts in Health Forum (www.lahf.org.uk) Developing research at Bournemouth University Can be creative and express self in many ways for example, through sport, gardening , cooking , music etc

19 cehill @ bournemouth .ac.uk
Thank-you ! To find out more please Caroline Ellis-Hill bournemouth .ac.uk


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