The Sociology of Chronic Illness

1
The Sociology of Chronic Illness Disability

• Jonathan Gabe
• Royal Holloway, University of London

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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)

• 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)

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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

• Socio-medical
• Interactionist / Post modern
• - treat together as both concerned with
  meaning of chronic illness consequences
• Conflict
• - Disability Studies

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1. Socio-Medical Approach (1)

• 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
• - peoples ability to cope (Conover 1973)

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Socio-Medical Approach (2)

• UK focus mapping the degree of Impairment
• - physical changes in peoples 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)

• Wood and Bury International Classification of
  Impairments, Disabilities Handicaps (WHO 1980)
• Found Impairment / Handicap often used
  synonymously
• Attempt to clarify terminology used in research

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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/cant 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)

• Impact of conceptual clarification
• Research to measure the degree of disability
• - scale created degree to which peoples
  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

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2. Sociological Approaches Interactionism /
Postmodernism

• 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

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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

• 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 interactionisms view of
  society
• product of interaction negotiation

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Interactionist studies in the UK

• 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

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Living with asthma

• Key findings
• 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

• So many have got it (asthma) that you cant
  really leave people out (of sport) or everybody
  would be left out. (15 year old male
  interviewee)
• I know I have asthma and I do limit myself but
  when people say Oh you shouldnt 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)

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Interactionism the work of Mike Bury

• 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

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Chronic Illness as Biographical Disruption (Bury
1982) (1)

• 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

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The problem of recognition an example

• Well at first I thought Id broken, chipped
  the bone in the finger, with it being a knuckle.
  I thought, I bet Ive banged it, really, because
  I do bang my hands a lot sometimes and I thought
  Id 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 didnt 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 1982171)

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Chronic Illness as Biographical Disruption (Bury
1982) (2)

• 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

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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

• Were 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)
  wouldnt be too pleased, I know that for a fact.
  Shed say Oh its not worth your while working
  here. Thats the kind of thing you get if they
  know you are going to be off every so often. So I
  dont say anything if Im off, Im just ill. The
  doctor doesnt even put down what is wrong with
  me. I invent something and he puts it on the sick
  note.
• (female factory worker in Bury 1982176)

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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)

• 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.

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Coping, Strategy Style (Bury 1991) (2)

• 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

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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 peoples 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)

• 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

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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 cant 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)

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Postmodern approach to chronic illness (1)

• According to Frank (2004) need to go beyond
• - simply documenting patients 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

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Postmodern approach to chronic illness (2)

• 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?

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3) Sociological Approaches Conflict /
Disability studies

• 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

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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
• Medicines role to Regulate Manage disability
• Solution political challenge oppression
  collectively.

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Impact of social oppression model

• 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

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Response of disability movement

• 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
  dont have.
• Some sociologists of chronic illness recognise
  must take more account of structural forces

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Conclusion

• 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.

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References

• 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
• Williams, S. (2000) Chronic illness as
  biographical disruption or biographical
  disruption as a chronic illness. Sociology of
  Health and Illness, 22, 40-67.