Conceptualizing Illness Experience and Perceived
Quality of Life of Cree from the Mushkegowuk
Territory with End-Stage Kidney Disease
Relocated to an Urban Center for Hemodialysis
Carrie Kolewaski, MSc (RHB),OT Reg, ON.
PhD Candidate
‘Learning together to work together’: 2007.04.18
Queen’s University, Kingston, ON, Canada
QUIPPED
BACKGROUND
• End-stage kidney disease (ESKD):
• < 10% kidney function
• Must receive renal replacement therapy:
• Hemodialysis (HD)
• Peritoneal dialysis (PD)
• Kidney transplant
•Statistics:
• 85% General ESKD population choose HD
• 20 % Cree ESKD population choose HD
• HD treatment is required when PD is no
longer a viable option
RESEARCH APROACH
M ETH O DO LO GY
RESEACH
QUESTION
‘ What
is the
illness
experience and
the perceived
QoL of Cree
ESKD patients
who required
relocation to a
distant urban
health center
and community
context to
receive their
life-sustaining
HD therapy?’
DATA COLLECTION
DESIGN
Interpretative
Paradigm
U
Multiple Interviews
4 HD patients
N
Participant Observation
I
Case Study
Tradition
Single Case
1 Interview
F
3 Nephrology
A
Nurses
N
(RN)
A
ANALYSIS
1. What is there?
2. Identifying
patterns
T
3 Attending
S
Nephrologists
O(DR)
DATA
2 Interviews
Participant
Observation
L
3. Properties
& dimensions
of patterns
4. Distinguish
themes
5. Create chain
of evidence
Y
3 Weekneebayko
S
Patient
I
Workers
(WPW)
S
2 Interviews
Intercultural
Interaction
Model
FINDINGS
Four key finding emerged from the data:
1. A delay by nephrologists in the referral of Cree patients
who required HD treatment at KGH,
2. Illness experience occurred in two phases of adjustment:
A) Living with ESKD, B) Living in Kingston,
3. Social isolation and cultural separation negatively
impacted the perceived QoL of Cree HD patients and,
4. Health beliefs created a divergence between Cree and
healthcare providers that impacted the clinical interactions.
Finding 4: Health Beliefs
“I got fed up with the
doctor. He asked me
one time, ‘How do you
feel?’ I told him, ‘I don’t
know, I’m not a doctor. I
want you to find out
what’s wrong with me. I
am sick. I don’t know
how I feel. You tell me
how I feel’. He said [to]
me ‘I don’t know, I’m
not a magician.’” (PT3)
“ I think that there
might be a knowledge
deficit. I’m not sure if
that knowledge deficit
is a coping mechanism
or they don’t want to be
bothered” (DR1)
Interaction
HD Patients
• Doctor
•‘Textbook’
knowledge and
Gatekeepers to
information
•Ambivalence
Nephrologists
• Patient
• Helplessness and
hopelessness
• Non-compliant
OVERVIEW OF FINDINGS
I L L N E S S
M
R
U
E
S
L
L
A
C
G
T
A
U
E
T
L
E
L
U
K
H
D
O
T
E
R
R
R
E
F
Negotiating Physical Symptoms
K
Li v i n g i n K i n g s t o n
U
N
Acculturation
Adjust to
HD
D
I
Acclimatization
T
F
N
U
Detachment
N
A
I
N
I
E
R
I
E
G
N
T
R
S
G
O
R
T
R
A
O
Y
L
N
Relocation
G
D
QUALITY OF LIFE
C H RO N I C PHASE
F
O
E
W
3 mo
Li v i n g w i t h E S K D
F
O
I N ITIAL PHASE
L
Acceptance
T
E
D
Q
K
0 mo
E X P E R I E N C E
Challenges
Encountered
Coping
Strategies
HD Patient Conceptualization of
their Illness Experience
Living with
ESKD
Negotiating
Physical
Symptoms
Living in
Kingston
Challenges Encountered
Relocation
Adjusting to HD
treatment
Coping
Strategies
Choosing HD treatment
Family and
community support
Cultural connection
Northern community
context
HD Patient Conceptualization of
their Illness Experience
S
Onset of
ESKD
Experience
uremic
symptoms
Acutely ill
in-patient at
KGH
Learn how to
live with
ESKD
T
A
G
E
S
Referred
to the predialysis
clinic to
see a DR
Admitted to
WHG
Air
Ambulance to
KGH
HD only
option for
survival
Discharged
and remain
in Kingston
Deterioration of health and QoL across illness experience
Learn how to
live in
Kingston
Consequence
of death
without HD
treatment
SUMMARY

Orientation and representation of illness
experience were conceptualized differently
between participant groups and the researcher,
but the components are similar.

Increase cultural awareness of health care
providers to facilitate patient-centered care
THANK YOU