Understanding individuals accounts of health trauma: the case of stroke survivors

Understanding individuals accounts of health trauma: the case of stroke survivors Andy Alaszewski and Helen Alaszewski CHSS Open Seminar 17th March 2010

Introduction • Medicine, social science and the illness experience • Disruption: the dominant account • Identifying alternative accounts • The implications of accounts for professionals • Some reflections

Medicine, social science and the illness experience • Dominant biomedical discourse- physical damage to brain of trauma such as stroke- results in variety of disabilities, affecting variously cognition, memory, speech, control of parts of body- medical rehabilitation to maximise recovery • Talcott Parson and the sick role- doctors perform moral role- differentiate illness from malingering- legitimately ill individuals excused normal roles- as long as they accept doctors’ advice and try and get better- this model does not work well with chronic illness, doctor provides advice but there is no return to ‘normal’, permanent changed functioning and roles

Medicine, social science and the illness experience • Mike Bury and chronic illness- shift towards patient perspective- diagnosis of chronic illness a biographical disruption- through narrative accounts normalise new situation • Anthony Giddens, Ulrich Beck and Risk Society- develop focus on the active individuals, reflexivity- intrinsic uncertainty of everyday life in late modernity- the protective cocoon of ontological security- fateful moments, pierce the cocoon, note often indicated by presence of representatives of the abstract system such as doctors- individuals need to actively reconstruct

Eliciting accounts of stroke • A series of linked projects- main one funded by Stroke Association- involved interviewing stroke survivors in Kent, within 3 month of discharge from any acute care- re-interviewing 3 times with final interview approximately 18 months after 1st plus particiaptns invite to keep diaries- 43 in initial round and 31 in final round • Elicit public account of stroke- Marilyn Strathern, account for self- presentation of self in interviews in a moral universe

Disruption: the dominant account • Unpredicted and unexpected: ‘out of the blue’ - lack of warning - can’t prepare self Mr Fry (54 at time of his stroke) I wasn’t one of these people [I] hardly had a cold or anything. This was just totally out of the blue. (Interview 1) Mr Coxon (58 at time of stroke) This was out of the blue. I’d had no inkling. With my back problem it happened once and it’s happened every time - my back goes into spasm, you know when it’s coming on, you can feel it, you’re prepared for it, you’re in pain all the time. But there was nothing to prepare me for this. (Interview 1)

Disruption: the dominant account • Sudden and shocking- Everything happens quickly- One moment life is going on in its own way, next everything has changed- Event is quick though making sense of what has happened may be slowerMrs Jenner (43 at time of her stroke) Gobsmacked, it turned my life upside down, where I was well one minute and collapsed the next. It was as sudden as that, no warning. (Interview 1) Mr Walker, (56 at time of his stroke) I was out jogging. I’m a hard runner but I do that every day. …And suddenly I couldn’t understand what was going on. I couldn’t stand, I fell over. I couldn’t make any sense. People were talking to me but I couldn’t understand what they were talking to me about out. (Interview 1)

Disruption: the dominant account • Immediate inability to function- represented by loss of control- leading to a dependence on others Mrs Jenner (43 at the time of her stroke) And I collapsed about 10 or half ten and that’s all I can remember that night, the first I know of it is waking up at in hospital in London, after brain surgery but the rest of it I don’t remember… [It was] difficult not being able to have a cigarette when you wanted one and having to rely on other people. (Interview 1) Mrs Temple (45 at the time of her stroke) It was frightening because I didn’t know what was happening.. because I had two ambulance up here and my mum and dad was up here, and dad was flapping because that’s what he does…and I was quiet, I was thinking ‘something’s not quite right but what the hell’….it was really, really hard to speak… the ambulance man was saying ‘is this how she normally is?’ and dad was saying ‘no she’s not!’ (3rd Interview)

Disruption: the dominant account • Uncertainty following stroke- For most survivors stroke undermines routine of everyday life, today is different from yesterday and not sure what tomorrow will bring • Source of uncertainty The challenge of everyday life- an unreliable body - visible and immediate such as inability to use one side of body, - others evident in specific circumstance such as memory and cognitive difficulties- third category relatively invisible such as fatigue and depression Interviewer Do you think it’s changed your body image at all? Mrs Earl (41 at the time of her stroke) Yes it has because this side of my face doesn’t smile quite the same. This side of my arm doesn’t work the same. Although you can disguise it, but you still daren’t smile (Interview 1).

Disruption: the dominant account • Undermining ontological security- fear and anxiety- possibility of another stroke Mrs Glover (aged 41 at the time of her stroke) This is the problem, it’s frightened me so much that if I was at home on my own and I got a headache, I’d be beside myself. Mentally I’ve got to learn to keep calm, I’m having relaxation classes now but that is a huge worry, I’m petrified about getting a headache because that’s exactly how it started, from a headache. (Interview 1)

Identifying alternative account s • The biographic disruption account - in retrospect a fateful moment, i.e. one of the major turning points in a person’s life- important in defining their identity and life, for some are a different person pre and post-strokeMrs Jarman (34 at the time of her stroke) I always relate to it, I mean, if I’ve been to somebody’s house, I say, ‘ ooh, I haven’t been here since I was ill’. It’s like that’s the barrier, things that happened before it’s like that was when my life sort of stopped and restarted, that’s really how it feels, there’s a before and after. (Interview 4)

Identifying alternative accounts • Biographical disruption and normalisation- rational planning of activities to achieve recovery milestones- working with experts knowledge and skill- for those in work took the form of a planned return to work in the medium terms, often reduced time- biographically one of the major life events Mrs Glover (41 at time of stroke) I try and give myself a step to climb every week and even though I struggle, I try and go up one more step and eventually I’m going to get to the top of the stairs and that’s how I look at it. I look at it at the moment I’m probably about the eighth step up but by August or September, I’m going to be at the top of that step. (Interview 1)

Identifying alternative account s • Minimising the stroke: personal capacity andresilience- almost immediate return to former lifestyle- business as usual, e.g. if working return within minimal period,week or so- in biography, a minor problem, a blip Mrs Yelland (49 at the time of stroke) I think it’s just more of a hiccup.InterviewerWhat place do you feel it has in your life?Mrs Yelland I know it’s there – I had it. Well I’ve sort of moved on from there really………My daughter’s getting married next year, so I’ve got to think about that (Interview 4)Mr Trueman (49 at the time of stroke) I smashed it in (his leg) about twenty places and he (the consultant) said, ‘you probably won’t walk without a stick’, and that was like a red rag to a bull, I mean particularly because after the operation I was driving out transit camper up to London every day which wasn’t the brightest thing I could have done but it was the bloody-minded part of it that, you know, it’s not going to stop me (Interview 3).

Identifying alternative accounts • The chronic illness account - some survivors were already ill at the time of their stroke, e.g. diabetes, and had already made life adjustments,e.g. often retired from work or on disability benefits- stroke added but did not change things, today is very like yesterday despite the strokeMs Temple (age 45 at time of stroke) No. I’m just the same. I don’t work anyway. I’m on incapacity benefit because I’ve got a few other things. I’ve got something called fibromialgia –.. …and I have chronic fatigue syndrome they kind of – if you’ve got one, you’ve got the other. (Interview 1)

Identifying alternative accounts • The chronic illness account - an added problem not significant on its ownMrs Bryant (aged 54 at the time of her stroke) Well it’s slowed me down considerably in a lot of ways. I used to walk down to the High Street and back sometimes and do some shopping and have a good old look around the shops but I don’t know when I’ll be able to, if I’ll be able to get out again and look around the shops by myself. InterviewerDo you think there are other things in your health that have affected you more than the stroke? Mrs Bryant Well, the blindness doesn’t help and the amputated toe doesn’t help and having bad hands doesn’t help because it hurts to hold my walking sticks to walk far anyway. It’s not as if I can see far to walk, it’s sort of catch 22. (interview 4)

Identifying alternative accounts • Disappointed expectations- individuals start determined to get back to life as it was- however for some their stroke is the start of ill-health- one health problem after another and continual set backs- manage day by day with not real hope of getting back to normal, e.g. work- not a single event but a series of events that result in a new biography- episodic interactions with health and other services Yes, I think sometimes that’s the irony of it, whereas before, it’s like the extreme ends of the stick isn’t it. Whereas before I was flat out now I am just out. (Mr Vernon, age 43, interview 4) At the moment I’m thinking it’s huge. It’s a huge issue for me. Had I recovered, as I said, before I was recovering really well and it didn’t bother me too much but because of all the other health issues I’ve had it’s become the be all and end all of the world and I’m constantly thinking about it (Mrs Jenner, age 43, interview 4).

Identifying alternative accounts • Accounting- narratives serve same function, to present person as rational- dealing with difficult trauma • Accounts changes and develops over time- initial responses very similar- unexpected and undesired trauma- loss of control and initial dependency • Overtime variation in accounts- one response fits well with Bury’s model of biographical disruption and normalisation- rapid recovery emphasised the importance of business as usual, rapid return to ‘normality’ through their personal resilience, minimised the impact of stroke- other survivors also minimized but for different reasons, they placed it within a biography of illness, one more problem- others felt they were healthy before their stroke but it was the start of a period of ill-health – wanted to get back to normal but experienced set backs, nothing really helped

Implications of narratives for professionals • The ‘normal’ recovery- Some individuals who had not been experiencing ill health adopted a ‘rational’ or planned response, - aim to get back to ‘normal’ milestones, - personal efforts + professional advice and skills Mr Riley was willing to accept help from professionals as long as it helped him achieve his targets: And she [Occupational therapy] would walk along the corridor of that hospital with me behind her. She wouldn’t look at me. She would just walk and say ‘well, follow me’ She knew that I couldn’t do it properly so she more or less challenged me to do it.. It might not work with everyone and I’m sure she was very responsive to that. But I like that because it was this challenge and I thought you can walk up there and I’ve got to hold this wall to get along this corridor but she forced me to extend myself, to challenge. [4th Interview].

Implications of narratives for professionals • Rapid recovery- importance of business as usual, - rapid return to ‘normality’ through their personal resilience, - minimised the impact of stroke- regarded professional advice as a challenge, determined to ‘show’ them, overtime indicated disengagement contact a reminder Interviewer Do you feel that you took things for granted before you had your stroke? Mr Fry (Aged 54 at time of stroke) I do, yes. But I still do now. I haven’t really changed. I can’t think of anything that I’ve really changed to be quite honest with you. Even food wise. I know I’m supposed to cut down on a lot of things and eat other things, but I must admit, I haven’t. (Interview 2)

Implications of narratives for professionals • Another episode of illness- if already living with illness, the stroke was an additional problem - already made long term adjustment; retirement of disability benefit- droping contact with stroke specialists but maintain with others Interviewer: Have you been discharged now from the stroke consultant? Ms Temple: Because I had the thing in March and I think the last time I saw him was in September or October, quite a while now Interviewer: Are you still being monitored for your other conditions by the hospital? Ms Temple: Yeah, the GPs doing that now, I was seeing the rheumatologist and he said I was on all the right medication and there wasn’t anything more they could actually do to help me but if I thought it was getting much worse or whatever just to phone and make an appointment and I could go back and see the rheumatologist and I could go straight through without having to see the doctor [GP]….nothings better there at all... I’ve got arthritis in my hip as well now.

Implications of narratives for professionals • Recurring illness- the stroke was the start of a period of ill-health – wanted to get back to normal but experienced set backs- nothing really helped, professional advice needed but not forthcoming in ways which helped, a sign of continued difficultiesMrs Jenner No one will tell me whether I’ll be able to do those things or not in the foreseeable future. I mean I don’t need a definite date, like 27th July, you will be able to swim again. I just want an approximate timing because it will give me a goal – a goal to work for. (Interview 2)

Some reflections • Limits of single models- tendency in some areas of social science to develop a single model that fits all- there are indeed common elements in accounts, especially in those elicited soon after stroke- these fit within biographical/disruption of ontological security and a fateful moment, i.e. sudden traumatic event with loss of control over body, relationships and environment • Diverse accounts- diversified over time, note ideal types- normalisation through personal action, the modern rational response to misfortune- rapid response, biographical minimisation exceptional personal resilience learnt from past adversity- absorption into a biography of chronic illness, again minimise but for different reasons- disappointed expectations, attempt the modern rational response but it seen to fail due to uncontrollable events

Some reflections • The position of professionals in accounts- way of enabling survivors achieve their goal- survivors who adopt the rationalist approach see obvious benefit (and limits) of professional advice- they want professionals help them define and achieve recovery targets- rapid responders want to show how they could exceed professional expectations- survivors who absorb the stroke within a chronic illness biography emphasize their long term relationship with pre-stroke professionals- survivors for whom the stroke is the start of illness and other misfortune felt forced into continuing relationship with professionals but this did not appear to assist their aim of recovery

References Ulrich Beck, Risk society: towards a new modernity, London: Sage. 1992. Mike Bury, ‘Chronic Illness as Biographical Disruption’, Sociology of Health and Illness, 4 (2) pp. 167-182, 1982 Anthony Giddens, Consequences of modernity, Cambridge: Polity Press. Talcott Parsons, The system of modern societies, Englewood Cliffs, N.J.: Prentice-Hall, 1971. Marilyn Strathern (ed.) Audit cultures: Anthropological studies in accountability, ethics and the academy, London: Routledge, 2000.

Centre for Health Services Studies http://www.kent.ac.uk/chss Contact Helen Alaszewski at h.p.alaszewski@kent.ac.uk

Understanding individuals accounts of health trauma: the case of stroke survivors