subjective

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
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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