Transcript SOCIAL AND COMMUNITY PERSPECTIVES

SOCIAL AND COMMUNITY
PERSPECTIVES
The impact of chronic illness on
everyday life
25th February 2003
Why do we need to study patient’s
experiences of chronic illness?
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Any illness disrupts everyday life in some way
Feel both mentally and physically unwell
Look forward to recovering…….
Not the case for chronic illness
Western society chronic illness increasingly
common
• “…..chronic illness can impact upon
sufferers’ daily) and their sense of self (the
view that others hold of them)”
(Nettleton,1995,69)
Why do we need to study patient’s
experiences of chronic illness?
• Biophysical impact
– ‘normal’ functioning of mind and body central to
our sense of self and relationship with others
– If unable to function ‘normally’ because of illness
and/or disability  profound affect on relationships
and our own identity
• Being dependent = problematic
• Chronically ill person needs to be wary of
making too many demands – must do what is
socially acceptable.
• Not only biophysical impact  social impact
on person’s and carer’s life
Why do we need to study patient’s
experiences of chronic illness?
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Important for health service provision
Improved quality of life
Few “magic bullet” cures
Purchasers want to fund effective treatments
Better understanding  appropriate care
To understand QoL need biopsychosocial
approach.
Onset of chronic illness
• Can be striking
• More likely to be insidious
• ‘Normalise’ symptoms  lay
explanations
Onset of chronic illness
I felt like I’d had a bug or something, in
fact I was beginning to think that I was a
bit of a hypochondriac, because I was
feeling very tired and not well, but
couldn’t really put my finger on it.
(Anna)
Getting a diagnosis
• Patients may use lay referral system to
legitimate decision to go to doctor.
• May be prolonged period of uncertainty.
• Process of diagnosis may be very
unpleasant.
Getting a diagnosis
The last barium enema I had, they were
busy taking pictures. The nurse hadn’t
blown up the balloon (the valve to keep
the barium in situ) properly because it
was hurting that much. I started to feel it
coming out. The radiologist said it
wouldn’t. And out it came, it went
everywhere. Oh what an
embarrassment
Reactions to diagnosis
Relief: symptoms are legitimately a disease.
“You have multiple sclerosis”, the doctor at
the hospital said. I couldn’t wait to get out of
the out-patients’ department. Once in the car I
turned to my husband and said gleefully
“thank God, I now know what’s wrong with
me, I’m so pleased.”...Now I knew I could tell
people who asked what was wrong with me I was not imagining things, or going mental Yippee!
Reactions to diagnosis
Shock. e.g. cancer
A doctor came to me in the recovery room
and just said, “You have a tumour.” I said to
him, you know, “Is it canc....?” Well I didn’t
say cancer, I asked him what it was. He said,
“Yes, I’m afraid you’ve got cancer,” and he
went away. And then a nurse came in, she
was a staff nurse I think, and she said, “Oh
they can do so many different things now-adays for that sort of thing, go home and forget
about it.” Could you forget it? You couldn’t
forget it. She meant well. (Liz)
Reactions to diagnosis
• Can be very threatening if diagnosis has
ambivalent status (e.g. ME/CFS) or is
stigmatising (e,g HIV).
Two approaches to
understanding illness
• Functionalist
– Macro approach
– illness  adoption of appropriate role
– ‘sick role’
• Interpretative approach
– Micro approach
– focuses on how person who is ill and those around
make sense of illness
– explores how these interpretations impact upon
action
Functionalist
• Parsons (1951) – Sick Role
• Illness  socially and biologically
altered state
• Sickness = form of deviation from norm
• Sick Role  privileges and obligations
Sick role
Patient’s privileges/rights:
– Allowed to be exempt from normal social
obligations
– In need of care and unable to get well on own
Patient’s obligations:
– Must want to get better asap
– Must seek and co-operate
competent medical help
with
technically
Generally notion within society that should
see to get better asap.
Problems with sick role
• Sick role = ‘ideal’ – temporary state,
based on acute illness
• People do not automatically  sick role
• May not seek help for illness
• Continue to work
• Will
vary according to different
conditions. e.g. HIV, lung cancer
Freidson (1970)
built on Parsons concept
• Extent to which rights and privileges of
sick role granted dependent upon the
perceived seriousness of the disease
and its legitimacy.
• Three types of legitmacy:
• Condtional
• Unconditionally legitimate
• Illegitimate
Freidson
• Conditional
– Those whose disease is treatable and will
recover
• Unconditionally legitimate
– Untreatable – person cannot get well
• Illegitimate
– Illness = stigmatised rights and privileges
unlikely to be granted
“Some people can’t understand why I’m
in a wheelchair sometimes and not
other times…..with some as long as I
look cheerful and say I’m feeling fine
they can cope with me bit if I say I don’t
feel well they ignore me, or say I look
well? I feel that some of them think I’m
being lazy or giving up if I’m in a
wheelchair and they are inclined to talk
right over my head to my pusher”
Functionalist - summary
• Sick role = ideal response to illness,
patient must want and try to get better
• Reality = much more complex
• How people respond to symptoms/
seeking help depends upon social and
cultural circumstances.
• Clearly does not apply to those with
chronic conditions in same way
Interpretative
Need to understand experience of illness
in everyday context
Impact of chronic illness
• Chronic pain may be difficult to cope with
• Some diseases  uncertainty e.g. MS, RA
• Information
• important for ‘control’
• role of self-help groups
• Patients may come to reject medical advice –
may seek alternatives
• Patient  ‘expert’
Biographical disruption
• Physical dysfunctions have social
consequences e.g. incontinence - social
and personal significance
• “Biographical disruption” = assault on
person’s sense of identity. Loss of self Charmaz (1983)
Biographical disruption
“Everything’s changed….. I was working
full-time my husband and I do dance
classes, obviously cleaning the house,
taking the dogs out, I had quite an
active life. And my job at work is quite a
responsible one, and I like to keep quite
active. I hate being on my own, I hate
my own company…. It’s just turned from
all go to all stop.” (Rachel)
Biographical disruption
• Loss of self - Charmaz (1983)
• Former self-image collapses but self-image
that replaces it is not equally valued
Because not feeling like a full woman is
horrible, it really was. It was, I think you feel
so mutilated....I just prefer to be on my own
[in a ward side room] and that’s since my
mastectomy, you know, because I don’t know,
it’s when I felt partly a woman I just didn’t like
getting undressed. (Heather)
Biographical disruption
• Loss of role and loss/change of future 
grieve
No, it’s the fact that people have got futures.
People will come, I feel it worse when people
come to the house, friends, family and say,
we’re going to do so-and-so next year and it’s
not until they’ve left, and I can see them leave
that I think to myself, well they’ve got a future,
they’re planning. And I can’t plan, but there
you are. It’s not being able to look forward.
(Liz)
Biographical disruption
• May feel burdening others  isolation
If I feel bad sometimes Gina’ll
[daughter] ring up and say, “How are
you?” And I’ll say, “Oh I’m good, I’m just
sitting on the sofa watching TV and
that.”....But I won’t say, “I’m feeling
really ill.” They just don’t want it day in
and day out you know. (Katie)
Stigma
• Control of the body  able to present
selves in socially valued ways
• Loss of control  stigma
• Some illnesses are very stigmatising
e.g. schizophrenia, epilepsy, HIV
Goffman (1963) Stigma: Notes on the
management of spoiled identity
Two groups of stigmatised people:
• DISCREDITED
– Physically visible characteristic which sets
them apart e.g. physical disability
• DISCREDITABLE
– Something not able to see, but if found out
 stigma e.g. mental illness/HIV
• Some conditions both e.g. epilepsy –
usually ‘discreditable’ but if have seizure
 ‘discredited’
Stigma
• Stigma can be Felt or Enacted
• Felt
– people feel others treating them in a different way
– Or people would respond to them differently if
knew about diagnosis
....you don’t get treated the same, you get
treated as though you’re a bit senile and
you’re not the same person anymore. The
cancer takes over the family, it’s the condition
it’s not mum or Katie.
Stigma
• Enacted
– actual avoidance
– treated in different way because of diagnosis:
I felt dirty that was the worst thing. My sister
proved that just after I got diagnosed, I’d gone
to her house and I ‘d had a bath, and
everything I touched she threw in the washing
machine. She wasn’t doing it secretly, it was
like, “Can I catch it?” Kind of thing. (Ann)
• Effects of being stigmatised equally
devastating whether felt or enacted.
Patient as expert
• Chronic Illness may  contact with a
number of different health professionals
and services – confusing / time
consuming
• Contact vary between different
conditions:
– In early stages e.g. diabetes, may
decrease as time goes on.
– Other diseases  more help as time
progresses e.g. MS, Cancer
Patient as expert
“You meet so many different people and
you have so many different names to
remember, it just sends you mind blank.
We’ve got enough bleeding people
involved with doctors and things you
don’t want social services on your back,
because once they start they don’t stop.
They’ll be camping out on the bleeding
front lawn!” (Sarah)
Patient as expert
• Person lives with chronic illness 
expert – seek out information
• Tuckett et al (1985) – ‘meeting between
experts’
“We conceive of the consultation as a
meeting between one person who has, by his
training and experience, access to scarce
and specialist knowledge and another person
who has, by experience, immersion in cultural
and past discussion a set of ideas about what
is happening to him” (Tuckett et al,1985,217)
Effects on family and social
relationships
• Chronic illness places huge strain on
personal and sexual relationships:
I’d had to stay in the house all the time,
I was virtually a prisoner. I couldn’t go
out because everywhere I went I had to
make sure there was a toilet. When I
tried to explain to the boyfriend, he just
couldn’t understand. We split up
eventually. (Woman with ulcerative
colitis).
Effects on family and social
relationships
• May be particularly difficult for adolescents,
young people
• Person  distressed at failing in role
A lot of the practical things I’m incapable of
doing, my wife is taking over an increasingly
practical role. For goodness sake she even
checked the oil on her car the other day something that’s been unknown before!....It
seems very strange, I’m about used to it now,
the fact that I can’t and therefore she has to,
but it was a bit of a challenge to the old male
virility! (Roger)
.....the washing up, and the cooking and the
cleaning and that, I don’t do it so much
anymore, and they’re having to do more, and
I don’t like it, because it’s my role. I don’t like
my husband coming in from work and
stacking the dishwasher or unstacking the
dishwasher. I’ve lost control if you like, it’s my
job not his..... I hated cooking anyway, so
that’s been quite easy to give that part up,
although funny enough even that I’ve
resented it because it was my job, it was my
job to do it all. (Anna)
Effects on family and social
relationships
• Impact on carer – change in relationship
“It’s more difficult for somebody who’s
looking after you because it’s not
happening to them and they’ve got to
watch it happen to you, that’s what’s a
bit more difficult.” (Ruth)
• Carers often isolated, suffering from
poor health themselves
Summary
• Chronic Illness increasingly common
• Chronic Illness = huge impact on everyday
life  biographical disruption
• Need to understand patient’s experience
• Patient  experts in own condition – care =
partnership
• Need for co-ordination of multi-agency
working – patient may get confused/annoyed
with different people