Transcript Postmodern approach to chronic illness

The Sociology of Chronic Illness &
Disability
Jonathan Gabe
Royal Holloway,
University of London
Introduction
Chronic Illness covers wide range of conditions
epilepsy – arthritis – heart disease - asthma
 Has temporal dimension – chronic = khronos (Greek
for time) – long lasting
 Insidious onset – difficult to diagnose – especially
neurological conditions (MS)
 Uncertain trajectory / outcome
- variation in symptoms day to day
long term course
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Reasons for Sociological Interest
(1)
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Ageing Population Structure in Developed
Societies
- demographic transition
– decline in mortality/death rate all ages
- increased life expectancy from birth
- chronic diseases associated with later life
(RA, stroke, CHD, dementia)
Reasons for Sociological Interest
(2)
Problem faced by Medicine in managing /treating
chronic illness
- breakthroughs in treating older people (hip
replacements, cataract surgery) BUT
- doctors can only treat many illnesses of old age
palliatively
- minimise pain / help physical functioning
 Medicine looked to sociology
- understand social psychological consequences of
chronic illness
- inform medical practice
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Sociological response
1.
2.
3.
Socio-medical
Interactionist / Post modern
- treat together as both concerned with
meaning of chronic illness & consequences
Conflict
- Disability Studies
1. Socio-Medical Approach (1)
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Developed by sociologists/social researchers in
university Departments of Public Health 1960s on
Aim – map extent of chronic illness/consequences for
people
USA – focus – impact of social conditions on chronic
illness
– poverty/social class related to onset of disorder
- people’s ability to cope (Conover 1973)
Socio-Medical Approach (2)
UK – focus mapping the degree of Impairment
- physical changes in people’s bodies
 UK survey (Harris 1971)
- Age and impairment – 16-64 years – 4%
- over 65 – 28%
- Gender and impairment – women twice as
likely to be impaired than men
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Socio-Medical Approach (3)
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Wood and Bury International Classification of
Impairments, Disabilities & Handicaps (WHO
1980)
Found Impairment / Handicap often used
synonymously
Attempt to clarify terminology used in research
Impairment, Disability and
Handicap (1)
Impairment
- Abnormality in structure & functioning of the Body
Result of disease or trauma (e.g. road accident)
Disability
Restrictions to activities as a result of impairment
Changes to what a person can/can’t do e.g. everyday tasks such
as self care
Recent version of the schema uses `activities’ rather than
`disability’
Handicap
Social disadvantages resulting from Disability or Impairment
Focus on material or social needs
Recent version of schema uses `participation’ rather than
`handicap’
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Impairment, Disability and
Handicap (2)
Relationship between 3 dimensions not necessarily
direct
- some impairments not disabling - disfigured from fire
but not disabled – can still do some activities.
- BUT can cause handicap – response of others
causes handicap
 Differences in severity on different dimensions
- low degree of disability (tasks undertaken) but high
degree of handicap (response of others)
 Disability not just present/absent
- involves judgement about degree & varies with context
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Impairment, Disability and
Handicap (3)
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Impact of conceptual clarification
Research to measure the degree of disability
- scale created – degree to which people’s movement
affected by a) limited sight
b) limited hearing
Overall impact of this work
- shifted focus from clinic to everyday life
- influenced UK policy – benefits now less reliant on
medical assessment.
- BUT little scope for independent sociological voice
2. Sociological Approaches –
Interactionism / Postmodernism
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Earliest e.g. of interactionist work in USA
Strauss (ed) Chronic Illness and Quality of Life
Series of condition specific studies
Focus on `interactional difficulties’ faced by
people with disabling illnesses
2 studies as illustrations
Chronic Illness and Quality of Life
(Anselm Strauss ed 1975) (1)
Rheumatoid Arthritis (Weiner)
 Focus – How people with RA pass for normal
 Disguise symptoms to avoid negative response
 Maintain normal life by `balancing decisions’
- balance degree of effort required to remain
normal V
- consequences of not doing so
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Chronic Illness and Quality of Life
(Strauss ed 1975) (2)
Respiratory Illness (Fagerhaugh)
 Focus on way those with RI negotiate way through
social life
 Try to manage symptoms of breathlessness & lack of
oxygen
 Yet symptoms still intrude on quality of life
 BOTH STUDIES emphasise
- need to maintain sense of order & self identity
under conditions of considerable strain
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Strauss and Interactionism
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Chronic illness not just biological entity – patterned by
social conditions.
Also a negotiated reality – shaped by
- decisions & tactics
- employed by patients and others
- emphasis on normalisation
- varies according to time/ trajectory of illness
- importance of contingency / context
Illustrates symbolic interactionism’s view of society –
product of interaction & negotiation
Interactionist studies in the UK
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5 examples – Jon Gabe, Mike Bury and Kelly
& Field
Living with asthma – Gabe et al (2003)
Interview based study of 55 young people
living in London, aged 8-16, 28 male, 27
female, with moderate to severe asthma
Focused on the meaning of meaning of
asthma – experiencing, explaining, managing
Living with asthma
Key findings:
1. Meaning needs to be related to context of everyday life - school
and home
- clinical & epidemiological literature focuses only on medical
treatment.
2. Children/young people are actively involved with their condition
and its management
- not passive victims of disease
- developed strategies to manage it – with help from friends,
parents and teachers
3. Evidence of attempts to normalise having asthma
- inhaler part of their lives at school & accepted by other children
- dislike it if teachers treat them as `different’
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Evidence of normalisation
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`So many have got it (asthma) that you can’t really
leave people out (of sport) or everybody would be left
out.’ (15 year old male interviewee)
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`I know I have asthma and I do limit myself but when
people say `Oh you shouldn’t do this because you
have got asthma’. I feel it is unfair, that they are
blocking you and.. I just make myself do it, to show
them just because I have got asthma I am no different.’
(11 year old female interviewee)
Interactionism – the work of Mike
Bury
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3)
Bury (1982, 1991, 1997)
Sees chronic illness as `disruptive event’
- disrupting structures of everyday life
3 aspects of disruption
Disruption of taken for granted assumptions/behaviour
– about body
Disruption to biography – self – re-examine plans for
future
Response to disruption – mobilize resources
Chronic Illness as Biographical
Disruption (Bury 1982) (1)
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Interview study of 30 people with RA, 25-54 years,
mainly Female
Onset and the Problem of Recognition
No one recognised first signs of RA
- Swolllen finger/early morning stiffness just a nuisance
Onset insidious – seen as just wear and tear – too
young to get RA
Eventually admit symptoms to others & see GP
The problem of recognition – an
example
`Well at first I thought I’d broken, chipped the bone in the
finger, with it being a knuckle. I thought, I bet I’ve
banged it, really, because I do bang my hands a lot
sometimes and I thought I’d chipped it and thought `it
will go off’. It was months really before I got round to
going to the doctor because we got married in the July
and I didn’t go to the doctor until September. I just
thought it was one of those things that would clear up.
It never dawned on me it would end up like this.’
(female interviewee. In Bury 1982:171)
Chronic Illness as Biographical
Disruption (Bury 1982) (2)
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Emerging disability and the problem of uncertainty
Uncertainty about impact and course of condition &
how should behave
See disease as separate from self but such separation
precarious
- Disease as outside force yet feel invaded by it
Diagnosis both a relief & source of fear
- Prospect of growing dependency
Chronic Illness as Biographical
Disruption (Bury 1982) (3)
Mobilisation of resources
 Presence/absence of social networks important
 Opportunity to re-organise workload.
- may be limited – get little sympathy – worry
about losing job
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Maintaining normal relations by
mobilising resources at work
`We’re getting some new work .. And some of the girls
just seem to whistle through it, but it takes me all day to
do it. She (supervisor) wouldn’t be too pleased, I know
that for a fact. She’d say `Oh it’s not worth your while
working here’. That’s the kind of thing you get if they
know you are going to be off every so often. So I don’t
say anything if I’m off, I’m just ill. The doctor doesn’t
even put down what is wrong with me. I invent
something and he puts it on the sick note.
(female factory worker in Bury 1982:176)
Health & Illness in a Changing
Society (Bury 1997)
Two types of meaning making when faced with Biographical Disruption
 Meaning as consequence
- practical and social consequences
- extent symptoms disrupt everyday life / increase uncertainty / awareness
of disabling effects
 Meaning as significance
- deeper level – how illness affects identity
- how make sense of condition within broader cultural context
- draw on images
– negative – deformity with RA – soiling with bowel cancer
- more positive – CHD because of overwork
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Coping Strategy & Style (Bury
1991) (1)
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People adapt to challenges to identity & life style posed
by chronic illnesses in 3 ways
Coping
The way in which people put up with illness & disability
Involves cognitive and emotional dimensions
Come to terms with limitations resulting from bodily
changes
Severity of symptoms/stigma attached important e.g.
for epileptics infrequent seizures easier to cope with.
Coping, Strategy & Style (Bury
1991) (2)
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Strategies
How people try and manage their condition
Availability of resources important
Level of social support & material factors
Worst off face most difficulties
Style
Focus on performance
Planning, rehearsing & evaluating own actions with
other people in mind
Some choice of style possible – keeping active
The Body in Chronic Illness (Kelly
and Field 1996)
Kelly & Field argue that sociologists focused too much on
Meaning of chronic illness
 Paid insufficient attention the body, especially in culture dominated
by individualism, self awareness & body maintenance
 How does chronic illness impact on the body?
 Impinges on people’s capacities/shapes identity
 Attempt to maintain sense of continuity in face of bodily change
 But no longer possible to take body for granted
- e.g. when forced to use wheel chair – changes public identity
whatever the meaning of impairment for individual
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Assessment of concept of
Biographical Disruption (1)
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Concept widely used to understand how people make
sense of chronic illness - RA to stroke
BUT how useful is it? What are its limitations?
Based on adult centre model – what about conditions
from birth, early years? Part of self from birth =
biographical continuity
Ignores illness as normal crisis for working
class/elderly
- to be expected like hard work or `being old’
- stroke seen as `not that bad’ rather than `shattering
life’
Assessment of concept of
Biographical Disruption (2)
3. Condition might be biographically reinforcing instead
– HIV for haemophiliac confirms life time experience of illness
- HIV for gay men reaffirms their personal and political struggle/identity
4. In post modern world of constant biographical re-appraisal ( a
consequence of consumer culture) - diagnosis of chronic illness just
involves one more biographical revision.
5 Conclude – can’t assume chronic illness involves biographical disruption –
need to take account of meaning & context, timing & expectation.
6. What is disruptive for some is part of daily life for others.
(Williams 2000)
Postmodern approach to chronic
illness (1)
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According to Frank (2004) need to go beyond
- simply documenting patient’s perspective
- how people normalize effects of illness/disability
Instead focus on the culture in which people located
and how this provides them with multiple discourses to
interpret their world, reinvent their identities.
See chronic illness in positive terms – embarking on a
journey/odyssey
- by facing up to what lost – transcending it
Supports idea of biographical re-invention rather than
disruption
Postmodern approach to chronic
illness (2)
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Instead of people with chronic illness being concerned to
stabilize/normalize condition.
They are seen as embarking on
- ceaseless/nomadic journey
- a journey with no clear end
Chronically ill now part of `Remission Society’
- large numbers of people with chronic illness
- but recovering from it – facing life with illness in remission
Links between body/self/society not one of interactional difficulties
but a shifting terrain – where individuals constructing new
identities
A useful rebalancing but over optimistic?
3) Sociological Approaches –
Conflict / Disability studies
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Developed by Disability Movement & academics (e.g.
Mike Oliver in UK)
Conflict theorists critical of interactionism
a) focuses on micro / social psychological level
- ignores structural / macro level
b) focuses on specific conditions rather than
commonality of experience
Alternative focus on social oppression not personal
tragedy – rights not needs
Social Oppression Model (Oliver
1996) (1)
Disability a social not individual phenomenon
 Disability is socially constructed
- a result of practices & perceptions that seek to
exclude those who deviate from norm of able bodied
e.g. in built environment
 WHO definition of Disability rejected
preferred definition some similarity with WHO definition
- Handicap = Social Disadvantage
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Social Oppression Model (Oliver
1996) (2)
Exclusionary Practices reflect requirements of
capitalism
- define what attributes
- productive/acceptable
- unproductive/abnormal
 Portraying Disability as feature of individual
- reinforces Ideology of Individualism
 Medicine’s role to Regulate & Manage disability
 Solution political – challenge oppression collectively.
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Impact of social oppression model
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Gained influence with organisations that fund research
and practitioners in social care
Been criticised by sociologists of chronic illness
Feel it has an over-socialised view of disability
By focusing on political dimension –
discrimination/oppression –
Ignore fact that many disabled chronically ill have
needs not just rights – especially older people
People with different chronic conditions have different
experiences
Response of disability movement
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Reject criticism of sociologists of chronic illness as
missing the big picture
Tension between the 2 positions may be irresolvable
However some within the disability movement
- accept need to make some distinction between
different impairments
- recognise that some of those with disabilities have
health care needs which others don’t have.
Some sociologists of chronic illness recognise must
take more account of structural forces
Conclusion
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Discussed three approaches to chronic illness/disability
Socio-medical model
Interactionist/Postmodern
Conflict approach of disability movement
Each approach asks different questions and thus
makes a different contribution.
Each has a place in a world where chronic illness &
disability growing as part of the demographic transition.
References
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Bury, M. (1982) Chronic illness as biographical disruption, Sociology of Health and
Illness 4: 137-69.
Bury, M. (1991) The sociology of chronic illness: a review of research and
prospects, Sociology of Health and Illness 13: 451-68.
Bury, M. (1997) Health & Illness in a Changing Society, Routledge, London.
Conover, P. (1973) Social class and chronic illness, International Journal of Health
Services, 3: 357-68.
Frank, A. (2004) When bodies need voices. In Bury M and Gabe, J. (eds) The
Sociology of Health & Illness: A Reader. Routledge, London.
Gabe, J. et al (2002) living with asthma: the experiences of young people at home
and at school, Social Science & Medicine 55, 575-98.
Kelly, M. and Field, D. (1996) Medical sociology, chronic illness and the body,
Sociology of Health and Illness 18: 241-57
Oliver, M. (1996) Understanding Disability: From Theory to Practice. Macmillan,
Basingstoke.
Strauss, A. (ed)(1975) Chronic Illness and the Quality of Life. Mosby, St Louis.
WHO (1980) International Classification of Impairments, Disabilities and
Handicaps. WHO