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The psychosocial impact of chronic wounds on patients with severe epidermolysis bullosa.
[junctional epidermolysis bullosa]
To
explore
the
lived
experience
of
individuals
with
chronic
wounds
associated
with
dystrophic
and
junctional
epidermolysis
bullosa
(
EB
)
,
to
improve
understanding
and
,
therefore
,
enhance
the
care
provided
to
this
group
of
patients
by
acquiring
in
depth
data
on
the
psychosocial
issues
that
affect
them
.
A
phenomenological
study
using
interpretive
phenomenological
analysis
was
employed
.
A
purposive
sampling
method
was
used
with
six
individuals
replying
to
postal
invitation
to
participate
.
Following
one
-
to
-
one
interviews
,
six
superordinate
themes
were
identified
.
These
were
:
coping
,
pain
,
perceptions
,
emotional
impact
,
social
impact
and
support
network
,
each
with
subordinate
themes
.
All
of
the
superordinate
themes
have
been
identified
by
previous
research
into
chronic
wounds
,
burns
and
disfiguring
conditions
;
however
,
new
subordinate
themes
arose
.
This
study
highlighted
the
need
for
individuals
with
EB
to
have
a
multidisciplinary
approach
to
their
care
with
a
particular
need
for
pain
management
,
psychological
intervention
and
nursing
support
from
those
whom
clients
perceive
as
understanding
the
requirements
of
patients
with
EB
.
Further
research
into
identity
issues
in
individuals
with
EB
is
advocated
.
There
were
no
external
sources
of
funding
for
this
study
.
The
authors
have
no
conflicts
of
interest
to
declare
.
Diseases
Validation
Diseases presenting
"perceptions"
symptom
junctional epidermolysis bullosa
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