Transcript The illness experience of CKD

The user’s voice: an
instrument for learning
about the management of
long term conditions
Dr. Jane Bridger
Research Associate
University of the West of
England, Bristol
Overview of the presentation
 An
overview of the study
 Presentation of theory developed
 Discussion of the core category
(enabling life skills) identified
 Application of core category (the
patients voice), with illustrations
 Conclusions
Why bother with the users
voice?
 CKD
does not follow traditional
models of illness cognition;
 Lay referral, comparison, and
subsequent affirmation from self
and significant others are key
triggers for illness recognition;
 There is a paucity of signs &
symptoms;
 We need to explore users
experiences.
Research Questions
 What
is the illness experience
of individuals with chronic
kidney disease?
 How can the insight gained
inform future interventions
for illness and disease risk
reduction with regards to
chronic kidney disease?
The study





Longitudinal study over one year data
collection commenced 11/04, concluded
03/06;
Grounded Theory methodology;
Exploring the illness experience of adults
with early to moderate chronic kidney
disease;
Recruitment from 2 GP practices in southwest England (total lists approximately
28,000 patients);
23 participants recruited from a sample of
119 (Only one with recorded diagnosis of
CKD) Age range from 35-84 years, all HT,
48% DM).
Data collection



Stage One: Semi-structured interviews
using a model of chronic illness
perception, 5 stage framework (Horne
and Weinman, 1994). Journal as aide
memoir (23/23);
Stage Two: (@ 6 months) Unstructured
interviews determined by theoretical
sampling with feedback on analysis to
date (18/23);
Stage Three: (@ 12 months)
Unstructured interviews (+/- drawing)
with feedback on analysis and theory
development to date (19/23).
Participants knowledge of
CKD
23
Participants
7 had
knowledge of
kidney problem
6 had
knowledge of
related issue
e.g. protein
in urine
10 stated no
knowledge of a
kidney problem
Healthcare centred
Collaborative communication
Language of illness
Affirmation
The illness experience of CKD
Person
centred
Personal health
role
Personal Coping
style
Language of
illness
Affirmation
Social
comparison
Collaborative
communication
Phase One
Oh what
kidney
problem?
Phase Two
Finding out
about CKD and
more…
Phase Three
Learning to
live with
CKD
Categories
Categories
Beginning of the
kidney
problem;
Visibility and
recognition of
CKD;
Diagnosing the
problem.
Illness experience
of CKD.. or not?;
Feedback about
CKD; Managing
and monitoring the
situation;
Relationships with
HCP’s; The care
environment
Categories
Learning to live
with CKD;
Gauging change
in status;
Individual illness
experience of
CKD
The core category: the
enabling<>disabling continuum
Socially
centred
Social
comparison
Language of
illness
Affirmation
Six health
related life skills
inter-relating
with the users
world
Core Category:
Enabling/Disabling
Personal
health role
Personal
coping style
Social
comparison
Person
Centred
Collaborative
communication
Affirmation
Language of
illness
Social world
Centred
Healthcare
Centred
Jane Bridger © 2008
“R no, I don’t think
nothing about it,
because I have no
pains at all, I have
nothing that can
indicate that at all,
that there is
something wrong with
my kidneys.”
Application of Core
Category:
Enabling/Disabling
affirmation; personal
health role; social
comparison.
(CM Interview Two)
Visibility and recognition of CKD
“It's hereditary, runs in the
family, my grandmother had
it, my father’s had it, my
brother’s got it….”
(LF Interview One)
“I think it’s different than
being singled out isn’t it,
and coming out of the blue.
It wasn’t such a surprise for
me really, so.”
(LF Interview Three)
Application of Core
Category:
Enabling/Disabling
affirmation; social
comparison;
personal health
role, personal
coping style;
Visibility and recognition of CKD
“I With respect to the kidneys, what
Application of
have they said about the kidneys
Core Category:
R Nothing, only this bit here, check her
Enabling/Disabling
U&E’s. But I don’t know what they
stand for… I know they had checked
them, and I take four of these
affirmation;
Furosemide each day, I don’t wee if I
collaborative
don’t take them now”. (JJ Interview communication;
One)”.
coping style;
“R I don’t think it has ever been
language of illness;
discussed, oh yes, oh your kidney
personal health
function is not very good or
role.
whatever.. She has never said we
shall have to keep an eye on this,
you’re heading….. I don’t know
Diagnosing
whether they tested it before, but
the problem
that was when they started, in
May 2004.” (JJ Interview Two)
“The previous
consultant realised
I had a problem,
and started to see
me every three
months, and each
time the problem
was there, and then
he was the one that
referred me.”
(FW Interview Two)
Application of Core
Category:
Enabling/Disabling
affirmation;
collaborative
communication;
coping style;
language of illness;
personal health
role.
Diagnosing the problem
Findings
There was a lack of awareness of
kidney problems amongst
participants, who also did not know
others with CKD;
Where identified, signs and
symptoms were commonly not
recognised (self, others, HCP), not
revealed to the concerned individual
(HCP), or not managed appropriately;
Active strategies by HCP to identify
CKD are essential.
“R I have been told what
has happened I do not
really want to know what
is wrong with me. They
have said if they can hold
things in this way, and I
have said thank heavens
for that.
I hope this is going to be
all right, give me some
tablets, and that’s it. I
take the tablets and go
back for checkups, and
that’s fine.”
(JH Interview One)
Application of Core
Category:
Enabling/Disabling
collaborative
communication;
coping style;
personal health
role.
Managing and monitoring the situation
“The Professor sent a
letter to everybody saying
he had got me where he
wanted me with regards to
my BP.” (FW Interview
Two)
“I actually believe that
physical exercise does
help bring the BP under
control. I believe it does
because I haven’t looked
back for some time now.”
(FW Interview Three)
Application of Core
Category:
Enabling/Disabling
Affirmation;
collaborative
communication;
coping style;
language of illness;
personal health
role.
Managing and monitoring the situation
“I have to re-affirm that
every time I see them, and
they say about putting me
on tablets. I say look, I
don’t like taking tablets
because this is how I got in
this position in the first
place, I wouldn’t be here if
it wasn’t for taking tablets
that you guys gave me. I
just feel that every time I
have to say that which is
quite sad really.”
(RW Interview Three)
Application of Core
Category:
Enabling/Disabling
Affirmation;
collaborative
communication.
Relationships with healthcare professionals
“R oh yes, he goes through
the whole lot, it’s a
worthwhile chat, he talks
to you about the
situation….and you have
got trust. You feel he is
doing something for you.
Well he has, its not you feel
it, you know he has.….”
(FW Interview Two)
Application of Core
Category:
Enabling/Disabling
Affirmation;
collaborative
communication;
language of illness;
personal health
role.
Relationships with healthcare professionals

“In fact I didn’t know I had one until you
came (laughs). In fact I said to the Doctor
about it and he said oh you know when
you give them a urine sample, there are
bits and pieces floating about in there,
and according to the letter, my condition
was deteriorating, but nothing much to
worry about, it was just deteriorating.
Until that I didn’t know I had a kidney
condition (laughs). No I never talk about
that, I don’t think about it.”
(DF Interview Three)
Application of Core
Category:
Enabling/Disabling
“I have a great facility for
throwing things to the
back of my mind and not
thinking about it, and
therefore whether that is
the right attitude or not I
don’t know.” (JH Interview
Three)
Coping style;
personal health
role;
Learning to live with CKD
Application of Core
Category:
Enabling/Disabling
“R: I check my blood, I check
my sugar
I: That’s right
R: I can know if it’s up or down,
Affirmation;
but I can’t check if my kidneys
collaborative
are up or down, there is no
communication;
physical check I can do, it’s only
coping style
when you take your urine, they
language of illness;
tell you whether there is a bit
personal health
more protein. Actually last time
role;
they told me it was actually
down, there was an
improvement.”
(FW Interview Two)
Gauging change in status
Findings
Participants sought means to gauge status
about kidney function and prognosis;
 Participants used different coping
strategies to cope with living with CKD,
denial, compromising, grieving,
maintaining control, and seeking to retain
a normal life;
 A lack of general awareness of CKD limited
support available from external sources
which resulted in no formal psychological
support for those with CKD.

Furosemide
160mg/day
Conclusions

Chronic Kidney Disease (CKD) (excluding
dialysis and transplantation) generally has an
‘invisible’ personal, public and professional
profile;

The enabling/disabling processes
determine



whether CKD is identified, recognised, and
actively managed leading to control and
regression of disease (FW, HJ, PW),
or whether there is continuing deterioration
(RW, JH, LF, JJ)
and how ‘enabled’ the affected individual is
with regards to learning to live with their
CKD.
Six health
related life skills
inter-relating
with the users
world
Core Category:
Enabling/Disabling
Personal
health role
Personal
coping style
Social
comparison
Person
Centred
Collaborative
communication
Affirmation
Language of
illness
Social world
Centred
Healthcare
Centred
Jane Bridger © 2008