Transcript Towards a Sociology of Inflammatory Bowel Disease (IBD

Towards a Sociology of
Inflammatory Bowel
Disease (IBD)
Dr. Cassie Ogden
University of Chester
What is IBD?
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Inflammatory Bowel Disease (IBD) is a chronic
disease of the digestive system that can effect
children of any age.
IBD causes symptoms such as diarrhoea, fatigue,
abdominal cramps and loss of appetite.
Patients experience periods of remission and relapse
of the disease throughout their lives.
A variety of treatments available that encourage
remission.
As well as the physical consequences, children can
be affected both psychologically and socially by the
disease (Engstrom, 1992) .
A Sociology of IBD?
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Disability theory (the social model).
Good potential although also need to
sociologically analyse the experience of
impairment.
Sociology of the body seeks to understand links
between biology and culture and work towards
an embodied understanding of reality.
The Quantitative Approach
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Health related Quality of Life (QoL) can be
described as a measure of how a person’s
health, disease or impairment affects the quality
of their physical, mental, cultural, environmental
and economic aspects of living (Ferry, 1999).
A QoL instrument was culturally adapted and
validated for use in the UK (IMPACT-III (UK)).
IMPACT-III (UK) can be used by health care
professionals to measure the psychosocial well
being of their patients with IBD alongside their
physical needs.
What does IMPACT-III (UK)
measure and is it sociological?
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IMPACT III (UK) measures psychosocial well
being of children (aged 8-17) with IBD through
the following domains:
IBD symptoms
Energy
Concerns/worries about living with IBD
Embarrassment
Body Image.
The Qualitative Approach
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The narrative inquiry technique (NI) is a medium
through which to present and reflect upon life
experiences (Goodley, et al., 2004).
Advocates of the approach believe that telling
stories allows other people’s experiences to be
understood more clearly.
Narrative interviews were conducted with a boy
with IBD aged 11 and his mother and a girl with
IBD aged 13.
Quotes from the narratives
I had noticed that some of the puss had been weeping from
my abscess a little. It made me feel a little bit dirty…Mum
and Dad are trying to get me to go out but they don’t know
how embarrassing it would be if I leaked. Katey Belton
(aged 13)
To help me cope with having the disease I take a mixed approach really. Firstly, I
don’t try to hide my IBD (this is why I have told some of my closest friends).
At the same time I don’t go around bragging about it like I am someone
special! I think by telling everyone that I had IBD would make it harder in
the long run and might mean that certain nasty people would bully me.’
Nathan
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A sociological exploration?
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Stories place the individual in the context of the
social environment and allow people to realise
the implications of both the disease and
treatment on their lives.
The embodied nature of the individuals’ lives
and the disabling attitudes of others are evident
within the stories.
The stories act as a tool for others outside the
health care arena to understand the experiences
of this patient group further.
Conclusions
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It could be argued that IMPACT-III (UK) could be
utilised practically in a clinical setting (although
potential to pathologise individuals with IBD further).
NI is perhaps better at exploring individual
experiences within a social context (but is not a
practical clinical tool).
Perhaps both approaches contribute to developing a
sociological understanding of IBD?
The complexity of living and coping with IBD is
clearly illustrated through both approaches and with
further development of sociological theory the
inclusion and improved psychosocial well being for
children with IBD, may eventually be realised.