Containing acute childhood illness
within family life: a grounded theory
Dr Sarah Neill, University of Northampton, UK
[email protected]
Professor Sarah Cowley, King’s College, London, UK
[email protected]
www.northampton.ac.uk
Acute childhood illness at home
Context
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Acute childhood illness is a universal
experience for children and families
Most such illness is managed at home
without recourse to health care
professionals
But, it still constitutes a significant
proportion of the workload in primary
health care in the UK (Royal College
of General Practitioners (RCGP)
2006)
Little prior theory available to explain
family processes at these times (Neill
2000).
Picture taken by Bob Reck
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The research
Aim:
• To discover the psychosocial processes which take
place in families when a child is acutely ill at home,
and the influence of these processes on families’
response to such episodes of illness.
Acute childhood illness defined as:
• ‘those common childhood illnesses which are of
short duration and are wholly managed at home’.
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Methodology
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Inductive Glaserian grounded theory methodology
(Glaser 1992, 2001)
Purposeful to theoretical sampling, theoretical
sensitivity, constant comparative analysis and
theoretical saturation (Glaser 1978, 1992, 1998)
Four sets of data > 29 interviews with 15 families
with children aged from 0-9yrs in the home
Family interviews with adults
Draw, write and/or tell technique with children over
5 years
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The grounded theory
Containing acute childhood illness
within family life
Parents strive ‘to do the right thing’
for their child and in the eyes of
others by:
• attempting to conform to
informal social rules (ISRs) for
the management of common
acute childhood illness
The key ISR is to:
• contain the illness within family
life unless the illness is serious
when they are expected to seek
help.
“He was a very hungry baby and I
think we were very anxious to do the
right thing by him.”
“Sometimes I feel sorry for them
because they say ‘oh I’ve got a cold
and so and so says off school for a
cold’ and I said ‘ Yes but we’ve got to
go to work, if it’s that serious the
teachers will send you home’.
Sometimes I feel as if, am I doing
the right thing there?”
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The grounded theory
Informal social rules
ISR’s include expectations that:
• the family unit will be defined as parents
and dependent children
• parents will assume traditional gendered
roles for illness management purposes
• normal/minor illness will
be contained within the family
• medical attention will be
sought for ‘real’ illness
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The grounded theory
Informal social rules
Defining family:
Mum:
I don’t really ask anybody else, no. …… I say to M (her partner)
“What do you think?”
Gendered roles:
Mum:
It’s usually me that stays off work… have to work it round..
Dad:
It’s usually their Mum they want anyway, isn’t it?
Dad:
Dad works, mum looks after kids, stay at home, it's still there to a degree.
Contain normal/minor illness and seek medical attention for real illness:
Int:
What do you think parents are expected to know?
Dad:
Spot the symptoms of every disease on the planet and know what it is before
you take them to the doctor…… All the common things, you have to spot everything
from chickenpox to a common cold to… we're supposed to know the symptoms now
for meningitis. You're not told about this as a parent, I mean, but …”
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The grounded theory
The rule frame for seeking help
Family definitions of illness become their
rule frame for seeking help. But…..
Defining the illness is often difficult
creating uncertainty concerning:
• diagnosis, illness trajectory, illness
management and symbolic
uncertainty.
Consequently, parents seek legitimation
of their definition of the illness from:
• written information, lay experts,
Family HCPs or NHS Direct
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The grounded theory
The rule frame for seeking help
Uncertainty
Mum:
Mum:
It’s hard to know really, isn’t it sometimes? It’s like meningitis and stuff and
you just don’t know do you? … Like we had that rash and I was like ..oowh.
I suppose if it goes on for a couple of days and nothings getting better or
whatever, I’ll say right that’s it, got to go to the doctors now.
Seeking legitimation
Mum:
I think we use NHS Direct before taking them to the doctor just so that we
don't waste the doctor's time and just to see if there is anything to be worried
about but ..
Dad:
Mum:
We do talk to my mother or sister who are both ex-nurses …
…if you are a little bit unsure is just to ring somebody to say I'm not a
hundred percent sure about this, what do you think, you know, just to, you
know, to get confirmation that you are doing the right thing as well …
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The grounded theory
Learning informal social rules –
do I, don’t I ask for help?
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Parents’ learn ISRs from interactions with others
as parents
Mostly from experiences of felt or enacted
criticism in encounters with doctors
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Doctors act as moral agents creating an ‘official
morality’ for the management of these illnesses
Mum: “We've all taken a sick child to the doctor only to be pooh
poohed away, you know, ... and then you feel silly…. So I think
you get a reluctance that builds up.”
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These experiences generate a ‘hidden anxiety’,
or fear of felt or enacted criticism, when unsure
about their child’s illness
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The grounded theory
Learning informal social rules –
do I, don’t I ask for help?
Felt or enacted criticism and its consequences
Mum:
… and then he was the one that ended up in hospital as I'd left it too
late and then I was made to feel amazingly silly for having not done
anything. But if, you know, a day earlier… I wouldn't have even got
an appointment because they would have just said, you know, oh…
it's just, you know, this time of year……… in his case he reacted
really badly, didn't he, and ….luckily for me his final like (gasps) of
breath was while he was sat on the GP's knee who had already
called an ambulance because he recognised things had gone on a
level …… and then I felt terrible because I hadn't taken him to the
doctor's until he'd got, you know, quite serious so - you can't win.
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The grounded theory
Learning informal social rules –
do I, don’t I ask for help?
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Parents balance risk of criticism against perceived threat
to their child’s health
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Whether or not they decide to seek help, parents are at
risk of felt or enacted criticism
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The grounded theory
Learning informal social rules –
do I, don’t I ask for help?
Int:
…you said something quite important there
which is about you never know at what point to
take him.
Mum:You don't. Because you don't want to umm,
Dad: You don't want to waste their time and you
don't want to harm him…It's a fine line.
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The grounded theory
Control and conformity
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Parents reduce the risk of criticism through
attempts to retain or regain control, in two ways
– controlling the illness, and
– controlling their exposure to scrutiny
Reducing the risk of felt or enacted criticism
Increasing families’ ability to contain the illness
• Parents desire to be seen to conform to ISRs
represents a form of social control, reflecting
underlying individualism in society.
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The grounded theory
Control and conformity
Preventing or controlling the illness
“…they were fine because I breastfed them”
“I’m very glad I had a first aid course because both of them have had silly accidents
where E has now split her eye open. ….I know how to put them on.”
“I had the routine, because of knowing what to do, everything was ready and you know
we woke up early and we put, if she sounded tight, it’s just switch it (the humidifier) on.
So by the time she woke up later it was really loosened up and you couldn’t hear it was
tight.”
Controlling exposure to scrutiny
“We have sought advice from both M's sister (who is a trained nurse and midwife) and
his mother (retired nurse ) in the past, because…. family health professionals are less
likely to be "critical" of us because their feelings towards us are different to those of our
GP/other medical professionals (feelings of affection and attachment, rather than just
advising another patient).”
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The grounded theory
Containing family life diagram
Identifying child’s illness
Containing illness
Parents’
health
Knowledge
Child’s
distress
• Defining family
• Defining parents’ roles
• Defining illness
Minor/Normal
‘Real’
Social
circumstances
Experience
Rule frame for seeking help
Expected to contain illness
Expected to seek help
Felt or enacted criticism and uncertainty can operate at any stage
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The grounded theory
Containing family life
Influences on definitions of illness:
Parent’s health: “...the times when you’re feeling worn out, rundown,
exhausted, you take on a lot of other people’s comments which can then be
very confusing...”
Child’s distress: “I think sometimes you’re in such a - you’ll be tired and the
child won’t stop screaming and you don’t really know what to do or …”
Social circumstances: “… you’re getting tired, your child is probably overtired
if they’ve been poorly, but it’s that feeling that you’re not going to get help
…because everyone else has gone to bed. So I think it’s that critical point.”
Experience: “… and the first time it happened, yes, we were both really
frightened, but then, once you know what it is it's like you just deal with it
then.”
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The grounded theory
Implications for health & social care
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Health care professionals need to move away from
demand management driven strategies towards
the development of professionals’ skills in:
– facilitating family care,
reducing the incidence of felt or enacted criticism,
reducing ‘hidden anxiety’ for families when seeking help
for a sick child.
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Social systems need to develop more family
support systems based on collective responsibility
for children’s health and welfare.
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