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

• HD treatment is required when PD is no longer a viable option

•Statistics: • 85% General ESKD population choose HD

• 20 % Cree ESKD population choose HD

RESEARCH APROACH

RESEACH

QUESTION

M E T H O D O L O G Y

DATA COLLECTION DATA

ANALYSISU

N

I

T

S

O

F

A

N

A

L

Y

S

I

S

DESIGN

‘ 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?’

InterpretativeParadigm

Case StudyTradition

Single Case

3 NephrologyNurses (RN)

2 Interviews

Participant Observation

3 Attending Nephrologists

(DR)

1 Interview

3 Weekneebayko Patient

Workers (WPW)

2 Interviews

4 HD patients Multiple Interviews

Participant Observation1. What is there?

2. Identifying patterns

3. Properties & dimensions of patterns

4. Distinguish themes

5. Create chain of evidence

Intercultural Interaction Model

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.

FINDINGS

HD Patients Nephrologists

Interaction

“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)

Finding 4: Health Beliefs

• Doctor

•‘Textbook’ knowledge and Gatekeepers to information

•Ambivalence

• Patient

• Helplessness and hopelessness

• Non-compliant

I L L N E S S E X P E R I E N C E

R

E

L

O

C

A

T

E

T

O

K

I

N

G

S

T

O

N

M

U

S

K

E

G

O

W

U

K

T

E

R

R

I

T

O

R

Y

L

A

T

E

H

D

R

E

F

E

R

R

A

L

0 mo

F

U

L

L

F

U

N

D

I

N

G

Acculturation

Detachment

Adjust to HD

Acclimatization

Acceptance

Negotiating Physical Symptoms

I N I T I A L P H A S E

Li v i n g w i t h E S K D

3 mo

F

U

N

D

I

G

N

A

L

T

E

R

E

D

C H R O N I C P H A S E

Li v i n g i n K i n g s t o n

Coping

Strategies

Challenges Encountered

Relocation

Q

Q U A L I T Y O F L I F E

OVERVIEW OF FINDINGS

HD Patient Conceptualization of their Illness Experience

Living with ESKD

Living in Kingston

Negotiating Physical

Symptoms

Adjusting to HD treatment

Choosing HD treatment

Challenges Encountered

Relocation

Coping Strategies

Cultural connection

Northern community context

Family and community support

HD Patient Conceptualization of their Illness Experience

S

T

A

G

E

S

Onset of ESKD

Referred to the pre-

dialysis clinic to see a DR

Experience uremic

symptoms

Admitted to WHG

Air Ambulance to

KGH

Acutely ill in-patient at

KGH

HD only option for survival

Discharged and remain in Kingston

Learn how to live with ESKD

Learn how to live in

Kingston

Consequence of death

without HD treatment

Deterioration of health and QoL across illness experience

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