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An exploration of the pilot implementation of an online symptom monitoring diary to support people living with cystic fibrosis self-manage their condition

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Roehrer, E (2013) An exploration of the pilot implementation of an online symptom monitoring diary to support people living with cystic fibrosis self-manage their condition. PhD thesis, University of Tasmania.

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Abstract

This
thesis
explores
the
pilot
implementation
of
an
online
symptom
monitoring
diary
(myCF
pilot
implementation)
developed
to
support
people
living
with
cystic
fibrosis
(CF)
through
symptom
monitoring.
The
research
was
conducted
within
a
broader
study,
the
myCF
project,
that
was
implementing
an
online
symptom
monitoring
diary
in
Tasmania.
The
myCF
pilot
implementation
was
designed
in
conjunction
with
health
care
practitioners
with
the
intention
of
increasing
the
patient's
symptom
awareness
and
in
turn
their
CF
self-­‐
management.
This
thesis
presents
findings
on
how
the
myCF
pilot
implementation
was
incorporated
into
the
daily
lives
of
people
living
with
CF
and
how
the
myCF
pilot
implementation
influenced
people’s
ability
to
self-­‐manage.
More
broadly,
guided
by
the
use
of
Normalisation
Process
Theory,
this
thesis
contributes
to
improving
understanding
of
the
socio-­‐technical
factors
and
processes
that
arise
during
the
integration
of
online
symptom
monitoring
with
supporting
chronic
disease
self-­‐management.
ICT
tools
have
been
proposed
as
a
mechanism
to
contribute
to
improving
people’s
self-­‐
efficacy
for
managing
their
condition,
which
in
turn
lead
to
improved
health
outcomes
(Cummings
et
al.,
2010,
Ekberg
et
al.,
2010).
There
is
a
need
for
more
qualitative
research
to
understand
the
requirements
for
ICT
self-­‐management
tools
(Ahern,
2007)
and
to
improve
the
efficacy
of
these
tools
(Gomez
and
Pather,
2012,
Cummings,
2008).
This
research
explores
the
potential
link
between
self-­‐management
tool
efficacy
and
developing
self-­‐
management
‘knowledge’.
ICT
tools
that
are
specifically
designed
to
support
individuals
in
symptom
monitoring
are
still
in
their
infancy
and
there
is
minimal
evidence
of
the
implementation
of
such
tools
(Gaikwad
and
Warren,
2009,
Nijland
et
al.,
2008,
Solomon,
2008).
Currently
most
self-­‐management
tools
include
a
monitoring
component
with
reporting
back
to
health
care
professionals
for
decision
making
on
the
management
of
the
patient’s
condition
(Hardiker
et
al.,
2013,
McDermott
and
While,
2013).
The
monitoring
of
symptom
data
by
health
care
professionals
contradicts
the
foundations
of
self-­‐management,
aligning
the
self-­‐management
tool
to
a
compliance
model.
CF
has
been
identified
as
a
chronic
condition
where
patients
could
potentially
benefit
from
ICT
supported
self-­‐
management.
CF
is
one
of
the
most
common
life-­‐threatening
genetic
diseases,
Tasmania
has
a
high
incidence
of
CF
and
much
of
the
CF
population
is
geographically
dispersed
and
socially
isolated.
This
thesis
contributes
to
the
current
substantive
and
conceptual
knowledge
to
the
field
of
information
systems
by
presenting
findings
on
the
interactions
between
the
online
symptom
monitoring
diary
and
CF
in
Tasmania.
The
research
methodology
employed
a
qualitative
approach
that
was
underpinned
by
a
subjective
ontology
and
an
interpretative
epistemology.
The
research
strategy
consisted
of
a
case
study
and
a
three-­‐stage
data
collection
over
6
months.
Three
groups
of
participants
were
involved
in
this
research,
for
all
three
stages.
These
groups
are:
1.
Children
(0-­‐10
years)
and
a
parent;
2.
Teenagers
(11
to
17
years)
with
CF,
a
parent
may
have
been
included;
and
3.
Adults
(18
years
plus)
with
CF.
The
research
design
consisted
of
three
research
stages:
Stage
one
explored
participants’
expectations
and
the
initial
introduction
to
the
myCF
pilot
implementation
by
conducting
semi-­‐structured
interviews,
observations,
and
field
notes.
Stage
two
explored
the
participants’
experiences
of
the
myCF
pilot
implementation
and
utilised
semi-­‐structured
interviews,
observations,
field
notes
and
web-­‐logs.
Stage
three
used
unstructured
interviews
to
develop
individual
case
studies
and
additionally
used
data
collected
from
the
first
two
research
stages.
Data
was
analysed
with
an
inductive
thematic
approach
that
developed
abstracted
themes,
which
generated
insight
and
discussion
from
three
different
lenses
for
this
research;
the
research
stages,
the
individual
cases,
and
at
a
holistic
level.
The
themes
were
interpreted
to
gain
insights
for
each
research
stage,
resulting
in
the
development
of
initial
findings.
Concept
maps
were
used
to
identify
clusters
of
the
initial
findings
and
to
enhance
the
interpretation
of
the
initial
findings
from
all
three
stages
of
the
research.
The
interpretation
process
resulted
in
research
findings
that
represented
both
individual
and
group
experiences.
Further
interpretation
of
the
research
findings,
assisted
by
the
use
of
Normalisation
Process
Theory,
answered
the
research
questions
and
research
objectives,
producing
the
final
four
key
findings.
In
order
to
understand
in
detail
the
attitudes,
insights,
perceptions,
and
individual
CF
attributes
over
times
as
they
interact
with
the
myCF
pilot
implementation,
a
qualitative
approach
was
adopted.
The
key
findings
for
the
research
are
as
follows:
o KF1:
Without
a
transition
from
self-­‐management
‘understanding’
to
self-­‐management
‘knowledge’
it
is
not
possible
for
an
online
symptom
monitoring
diary
to
provide
self-­‐management
support.
o KF2:
Symptom
monitoring
is
a
background
activity
for
those
with
CF,
and
a
focused
activity
for
those
who
care
for
people
with
CF.
o KF3:
Evaluation
methods
that
focus
on
use
of
electronic
tools
for
self-­‐management
support
are
not
able
to
holistically
capture
all
aspects
of
perception
of
helpfulness.
o KF4:
Lack
of
consistency
in
user-­‐interface
design
directly
impacted
on
perceptions
of
satisfaction
during
interaction
and
overall
evaluations
of
the
entire
online
symptom
monitoring
diary.
This
research
has
made
contributions
to
information
systems
knowledge
at
substantive,
methodological
and
theoretical
levels.
At
a
substantive
level
it
has
provided
a
case
study
of
how
the
myCF
pilot
implementation
was
incorporated
into
the
lives
of
participants,
and
how
self-­‐management
support
was
not
evident
from
the
pilot
implementation.
At
a
methodological
level
the
design
of
this
research
has
demonstrated
the
value
of
linking
the
analysis
of
the
research
stages
through
inductive
thematic
analysis.
The
thematic
analysis
moved
the
segmented
data
to
abstracted
themes
that
facilitated
individual
case
development
of
the
participants’
experiences
during
the
research.
The
interpretation
of
the analysis
through
the
use
of
a
concept
map
developed
the
basic
initial
findings
into
comprehensive
research
findings
that
reflected
both
the
individual
and
group
perspectives
present
in
this
research.
At
a
theoretical
level,
using
the
knowledge
management
hierarchy,
the
research
has
highlighted
that
the
myCF
pilot
implementation
does
not
support
self-­‐
management
without
a
transition
from
self-­‐management
‘understanding’
to
self-­‐
management
‘knowledge’.
The
research
has
demonstrated
that
current
evaluation
techniques
do
not
capture
the
intangible
criteria
that
indicate
whether
the
myCF
pilot
implementation
was
a
success
or
a
failure.
Finally,
this
research
has
demonstrated
that
before
technology
is
implemented
to
support
people
living
with
CF
with
symptom
monitoring
and
self-­‐management,
we
first
need
to
be
aware
of
what
the
participants
understand
self-­‐management
to
consist
of.

Item Type: Thesis (PhD)
Keywords: online symptom monitoring, cystic fibrbrsis, self-management, eHealth, self-management ICT tools, patient centred symptom monitoring
Additional Information:

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Date Deposited: 23 Feb 2014 21:50
Last Modified: 15 Sep 2017 01:06
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