Culture

1. Introduction
Personal narratives are descriptions of an individual’s past experience reflective of the narrator’s personal history[1]. Various models of evidence-based medicine disregard anecdotal sources of information[2] such as personal narratives in favour of quantitative data. According to McCluskey[3] the occupational therapy profession has been slow to adopt evidence-based practice in comparison to medicine, nursing and physiotherapy. Perhaps this is because due to the subjective nature of occupation poorly applied evidence-based practice can impair the client-centred approach[4]. Occupational therapy needs models incorporating subjective and qualitative[5] factors. This blog entry examines the place of personal narratives in the occupational therapy evidence base.

2. The need for subjective assessment.
Any evidence-base for occupational therapy must be built on studies of occupation and health. The World Health Organisation (WHO)[6] defined health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” Well-being is a poorly defined term often used interchangeably with other concepts such as life satisfaction[7]. Stanley and Cheek[7] aspire to a professional consensus on the definition of well-being. A contrived consensus could however confuse the public, just as our profession’s use of the word ‘occupation’ has. It is therefore likely that well-being can only be measured subjectively. Therapy is unlikely to be service-user centred unless narratives are taken into account[14]. Non-service-user centred intervention may impair wellbeing, and thus by the WHO[6] definition impair health.

“My urologist . . . wanted to cut off my testicles . . . that . . . would depress me.” [15: p.107]

Ethical implications prevent Occupational Therapy research from paralleling that of medicine and pharmacology. For example, extrapolations about the role of occupation in wellbeing can be made from accounts of occupational deprivation[8] but it would be inhumane to recreate such conditions for clinical controlled trials. Randomised controlled trials may also be unsuitable for testing the effects of occupations due to their artificial nature[9]. Analysing narratives may be the best method.

The socio-cultural context of activity is also subjective. It would be difficult to assess volition without subjective data and service-users’ interpretations of stressors sometimes correlate closer than objective markers, with effects on health[10]. It could therefore be argued that occupation is most accurately assessed subjectively. These constraints arguably increase the relative value of any insight gained from narratives.

Some diseases such as chronic fatigue syndrome[11] can only be diagnosed by analysis of illness narratives, and scepticism about the existence of some diseases such a chronic fatigue[11] and post traumatic stress disorder[12] has initially been overcome due to sheer weight of narratives. The latter is a pertinent example because it can directly link health problems to previous occupations. ‘Somatic metaphor’ is a term used to describe physical disorders that appear to be metaphorically linked to psychologically traumatic experiences[13]. Broom[13] found 137 of 513 cases (26%) in a disease and story database fell into the somatic metaphor category. Broom’s research was flawed because he only assigned 36% of his patients to the database (he excluded those with symptoms of known allergic cause) and used his own interpretations of the meanings of illnesses, rather than his patients’. Somatic metaphor is a narrative theme that could link occupation to health, and deserves further research.

3. Examples of narratives linking occupation to wellbeing.
Narratives can be classed as progressive people are moving towards their life goals, stable when they sustain the same position relative to their life goals and regressive when they are moving away from valued goals[16]. Progression towards valued goals is likely to be occupation dependant and may create a sense of well-being. Narratives have illustrated that non-occupation-based treatments lead to poor compliance [17] and well-being can correlate better with occupational opportunity than physical parameters of health.

“I am the healthy person and they are the sick . . . All your life you think you have to hold back your craziness, but when you’re sick you can let it all out” [15: pp.100-101]

Finally only narratives can describe the personal significance of routine activities[14].

“I couldn’t sleep, urinate, or defecate . . . when my doctor changed all this . . . what a voluptuous pleasure it was!” [15: p.112]

4. Difficulties with narrative analysis.
As a basic-grade occupational therapist, I sometimes find my seniors are unable to understand me. I am unable to understand why they stick to certain working assumptions and they seem unable to understand why I disregard them. Though we are using the same medium (English) it is apparent that we are using different languages. A similar miscommunication (arguably due to cultural incompetence) within the networking group ‘Occupational Therapists Having External Reproductive Systems’ recently resulted in minor outrage. Reflecting on the frequency and impact of intra-professional miscommunication one might assume the scope for error is higher when trying to understand the narratives of service-users or members of the public.

Narratives themselves contain several sources of inaccuracy. People select elements of an experience to describe when constructing narratives. Each time a story is told elements may be selected and put together differently depending on the teller’s emotional state[18]. Information may also be omitted to reduce self-disclosure[19] or for social acceptability[16].

Narrative structures are culture-specific. In England for example narratives are expected to have a beginning, middle and end. Perez and Tager-Flusberg[20] studied 39 paediatric clinicians’ assessments of anonymised narratives of 2 Euro-American, 2 African-American and 2 Latino-American children who were free of emotional or behavioural problems and of comparable intelligence quotients. The Euro-Americans received 21 diagnoses, the African-Americans received 33 diagnoses and the Latino-Americans received 53 diagnoses. Narrative styles of African-American and Latino-American children are not culturally constrained by the temporally sequenced logical structure characteristic of Euro-American narratives[20]. Lack of temporal sequential organisation is an indicator of psychosis in Euro-Americans[20]. Perez and Tager-Flusberg[20] therefore concluded that the misdiagnoses were a result of inter-cultural misunderstanding. Health care professionals could better understand their patients by transcending the constraints of normal social structure[21].

Structure can detract from the meaning of narratives because feelings are meaningful but cannot always be expressed logically[22]. People may feel pressured to construct their narratives around culturally determined roles to avoid loss of identity[23], for example infertile women who feel that society expects women to have children, may incorporate reasons for their lack of child into their life narratives[24]. Audiences[16] and circumstances[23] influence the way narratives are told. Service-users may only include information they feel is of medical relevance when speaking to health care professionals, or may be directed by interview structure. People may also omit data that they consider normal, because they expect it to be pre-conceived or pre-understood[17]. This can cause problems with communications across sub-cultures between people who have had dissimilar life experiences.

Construction of a narrative is itself an occupation and can change a person’s experience of the event he or she is trying to describe. Evolving narratives can become ingrained in a person’s identity[11] and alter his or her reflections on past experience. Occupational therapists can therefore guide service-users’ narrative constructions to produce therapeutic processes[25]. This inherent interference however reduces the validity of narratives as an assessment tool. As people’s narratives evolve and their perceptions of past events change they may encounter contradictions or dilemmas. People usually try to stabilise their narratives to maintain plausibility[23]. Versions constructed in the past may therefore inhibit a person’s expression of new but true meanings when re-telling his or her story.

The value of narratives depends on the ability of audiences to interpret them accurately. Just as a young child may not be able to understand stories written for adults, people with radically different life experiences may be unable to contextualise each others narratives. Health care professionals interpret patients’ stories on the basis of their own professional and personal experiences. This phenomenon has been termed ‘pre-understanding’[21]. Pre-understanding is culture-specific and can be a source of inaccuracy[20]. The overall scope for error in narrative analysis is therefore great.

5. Conclusion.
Narratives may be seen as a weak source of information due to their subjective nature, but they are essential for the assessment of subjective aspects of health, such as well-being. Without narrative analysis therapy cannot be truly service-user centred, and is unlikely to be successful if measured against the WHO[6] holistic definition of health.

V

6. References
1. Minami M. (1998) Politeness markers and psychological complements: wrapping-up devices in Japanese oral personal narratives. Narrative Inquiry, 8(2): 351-371
2. Pomeroy V.M., Tallis R.C. (2003) Avoiding the menace of evidence-tinged neuro-rehabilitation. Physiotherapy, 89(10): 595-601
3. McCluskey A. (2003) Occupational therapists report low level of knowledge, skill and involvement in evidence-based practice. Australian Occupational Therapy Journal 50: 3-12
4. Price-Lackey P., Cashman J. (1996) Jenny’s story: reinventing oneself through occupation and narrative configuration. The American Journal of Occupational Therapy, 50(4): 306-314
5. Bennett S., Tooth L., McKenna K., Rodger S., Strong J., Ziviani J., Mickan S., Gibson L. (2003) Perceptions of evidence-based practice: A survey of Australian occupational therapists Australian Occupational Therapy Journal 50: 13-22
6. World Health Organisation (1948) Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19-22 June, 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of the World Health Organization, no. 2, p. 100) and entered into force on 7 April 1948. http://www.who.int/about/definition/en/
7. Stanley M., Cheek J. (2003) Well-being and older people: a review of the literature. Canadian Journal of Occupational Therapy, 70(1): 51-58
8. Peters J., Nichol J., Pearson W. (1998) Tornado Down. London: Penguin.
9. Clark F., Carison M., Polkinghorne D. (1997) The legitimacy of life history and narrative approaches in the study of occupation. The American Journal of Occupational Therapy, 51(4): 313-317
10. Fuller T.D., Edwards J.N., Sermsri S., Vorakitphokatom S. (1993) Housing, stress and physical well-being: evidence from Thailand. Social Science & Medicine 36(11): 1417-28
11. Hughes J.L. (2002) Illness narrative and chronic fatigue syndrome/myalgic encephalomyelitis: a review. British Journal of Occupational Therapy, 65(1): 9-14
12. Weston S. (2003) Bestoftimesworstoftimes. The Sunday Times Magazine, October 5, 2003: 13
13. Broom B. (2002) Somatic metaphor: a clinical phenomenon pointing to a new model of disease, personhood and physical reality. Advances in Mind-Body Medicine, 18(1): 16-29
14. Finlay L. (2004) From ‘gibbering idiot’ to ‘iceman’, Kenny’s Story: a critical analysis of an occupational narrative. British Journal of Occupational Therapy, 67(11): 474-480
15. Broyard A., cited in: Major W. (2002) Aesthetics and social critique in Anatole Broyard’s Intoxicated by my illness. Journal of Narrative Theory, 32(1): 97-121
16. Robinson I. (1990) Personal narratives, social careers and medical courses: analysing life trajectories in autobiographies of people with multiple sclerosis. Social Science & Medicine, 30(11): 1173-1186
17. Barrett L., Beer D., Kielhofner G. (1999) The importance of volitional narrative in treatment: An ethnographic case study in a work program. Work, 12: 79-92
18. Semerari A, Carcione A, Dimaggio G., Falcone M., Nicolo G., Procacci M. (2003) Assessing problematic states in patients’ narratives: the grid of problematic states. Psychotherapy Research, 13(3) 337-353
19. Gross R. (2001) Psychology The science of mind and behaviour. London: Hodder & Stoughton
20. Perez C., Tager-Flusberg H. (1998) Clinicians’ perceptions of children’s oral personal narratives. Narrative inquiry, 8(1): 181-201
21. Fredriksson L., Eriksson K. (2001) The patient’s narrative of suffering: a path to health? Scandinavian Journal of Caring Sciences, 15: 3-11
22. Goleman D. (1996) Emotional Intelligence London: Bloomsbury
23. Taylor S. (2003) A place for the future? Residence and continuity in women’s narratives of their lives. Narrative Inquiry, 13(1): 193-215
24. Kirkman M. (2003) Infertile women and the narrative work of mourning: barriers to the revision of autobiographical narratives of motherhood. Narrative Inquiry, 13(1): 243-262
25. Rowe N., Wickham J. (2004) We live by the stories we tell: narrative and health. Therapy Weekly 16th December 2004: 9-12

This is a somewhat old post that I had been taking my time to finally post it so here goes..it is based around two letters that were submitted to the Telegraph way back about a year ago:

“Tea test

SIR - Office juniors are not the only people who have no idea how to make real tea (Letters, July 15). My mother was assessed last year by an occupational therapist as to whether she was fit to return home after a stroke. The OT considered she was not fully compos mentis. Why? She warmed the teapot with hot water, then poured it away before putting leaf tea in the pot and adding boiling water.

I was not believed when I pointed out that this method was correct and she had not been making the tea twice over.

N. Beale London, SE3”

Telegraph 18 July, 2006

I can’t of course speak on behalf of the OT in question but I know this complaint, if not directly the same, is not unheard of (from both patients and staff). The therapist in question has not been able to reply to these letters but there could of well been a reasonable reason for saying these patients in question were not “compos mentis”. Or of course they never actually said those things but hinted towards it. Whatever the case its simply not on.

So why is it that this sometimes occurs? Well the problem lies with that little thing called activity analysis which OT’s are supposedly fantastic at. The problem in particular is that we all have our preconceived idea of how a person should do something. Tea making is a classic example used by OT’s as a every day activity and as James suggests it is a somewhat subjective measure:

“One of the main criticisms of kitchen assessments in hospital - usually in the hospital OT kitchen, is that it isn’t actually the same as in the person’s own home, where they will probably be returning to. Someone might quite happily manage to do all sorts of things in their own kitchen, but appear to be confused and unable to the OT kitchen”

With much regret to my workmates I regularly provide an example of getting this activity “wrong” and that’s simply because I don’t make tea. Actually scrap that - I don’t drink tea. Infact my friends and family ban me from trying to make tea because I’m so lousy*. Yes, I am a total social outcast! God forbid the day if I have a brain injury and someone asks me to make a cup of tea - I would invariably fail with the above example.

Here’s a little side story which will let you into a little about me. I spoke to an old computer programming friend the other month and completely unprompted (regarding my current role as an OT) he said the following:

“I had to write a program for a job interview to simulate making a cup of tea. do you know it had about 200 steps?! a cup of tea is hard you know! … the worst bit was working out which order to put it all in - I’m a milk before tea man myself but realise its not the common method”

Aye, I certainly do.. there are more coincidences between computer programming and OT but that is for another post. The point is that OT’s sometimes forget the complexity of the task and more importantly the route in which it is taken. There is also another thing to remember we all have cultural differences between the way we do things. George Orwell recognises this issue when he talks about the “Russian style” of tea drinking in his essay “A Nice cup of tea”:

“Lastly, tea—unless one is drinking it in the Russian style—should be drunk without sugar. I know very well that I am in a minority here. But still, how can you call yourself a true tea-lover if you destroy the flavour of your tea by putting sugar in it? It would be equally reasonable to put in pepper or salt”

Unlike George we need to be understanding of these cultural differences, and some would argue this means learning about them. If you aren’t aware, the strange technique of warming the teapot is not unusual and infact it has been declared as the scientifically best way of making tea:

“Yesterday, he said the keys to producing the perfect cup were using soft water, warming the pot before filling and allowing the tea to brew for three minutes. It was also essential to use loose-leaf Assam tea rather than tea bags - “they slow down the infusion”.” From the Guide to the perfect cuppa starts a storm in a teacup

And now for the second letter in this posting.

“World Cup Revision

SIR - I was interested to read Neville Beale’s letter (July 18) about his mother who failed her stroke recovery test because medical staff did not understand the old-fashioned way she made tea. It does not Surprise me.

Eight years ago, during the World Cup, I had a stroke. The nurses were going to write me off because I could not answer their questions on football. They would not believe my wife when she told them I had no interest in the subject. “All men know about football” the said.

It took a visit to the hospital by my boss, to converse with me about nuclear engineering, to convince them I was actually compos mentis.

Since then, the joke every World Cup has been that I have to do my revision in case I have another stroke.

Richard Chester-Browne. Warrington, Cheshire.”

Telegraph 25 July, 2006

So what about the second letter writers experience? What can be the excuse for that? Lets imagine for a moment that the writer meant “OT’s” rather than “nurses” which could well have been the case*. Well, if that’s the case then I have to say there isn’t really any excuse - and even if they were nurses that’s still no excuse. OT’s *should be skilled in being client-centred and at the heart of this, working out what it is that engages & motivates individuals. We realise that no-one individual is the same and we are all different. Or at least we should.

In certain environments mistakes do happen and the reasons are often so numerous and complex that no one person is to blame. The football one is a classic mistake that I have kind of witnessed when you run a group five times a week, every week and your mind goes blank when trying to think of a current affairs topic to discuss and the general group seems to like football - but on a one-to-one basis? The mistake is perhaps borne out of routine and to a certain degree the human trait of stereotyping people. It can be difficult to assess a persons interests if they cannot easily communicate or their friends & relatives are not around. You could argue that if you take the average OT, their understanding of nuclear engineering would be quite limited (or perhaps “we were never taught that at college!” would be the response) - but now I’m stereotyping right?! So if you have been in this situation buck this worrying stereotype; What trouble would it take to google “nuclear engineering” and spend 5 minutes over lunch discovering that the man may be interested in that MRI scan you have recently taken of his brain! (if you haven’t worked it out, “nuclear engineering” covers a whole range of topics - one of which is nuclear medicine/physics read wikipedia for more info). What, do I hear you say “We don’t have time to look on wikipedia what nuclear engineering is!”?? Im afraid that I would equally say “this isn’t a luxury - its part of your job!”

* My Brother believes that there is a more sinister reason for me not being able to make tea: that it gets me out of making the tea. A clever approach that can get you out of doing all sorts of things but I have to say in this example its simply not true.

** I admit I hold onto this line of thought for quite sometime. If they were nurses then it could be more of an argument for OT’s on that ward which turns the argument into something entirely different..!