Carrie Kolewaski, MSc (RHB),OT Reg, ON. PhD Candidate

1. 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

2. 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

3. RESEARCH APROACH M E T H O D O L O G Y RESEACH QUESTION DESIGN DATA COLLECTION DATA ANALYSIS ‘ 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 HDtherapy?’ Interpretative Paradigm Case Study Tradition Single Case 4 HD patients Multiple Interviews Participant Observation U N I T S O F A N A L Y S I S 1. What is there? 2. Identifying patterns 3. Properties & dimensions of patterns 4. Distinguish themes 5. Create chain of evidence Intercultural Interaction Model 3 Attending Nephrologists (DR) 1 Interview 3 Nephrology Nurses (RN) 2 Interviews Participant Observation 3 Weekneebayko Patient Workers (WPW) 2 Interviews

4. 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.

5. 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 Nephrologists • Patient • Helplessness and hopelessness • Non-compliant • Doctor • ‘Textbook’ knowledge and Gatekeepers to information • Ambivalence

6. 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 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 M U S K E G O W U K T E R R I T O R Y 0 mo L A T E H D R E F E R R A L F U L L F U N D I N G F U N D I G N A L T E R E D Negotiating Physical Symptoms Relocation Acculturation Adjust to HD Acclimatization Challenges Encountered Coping Strategies Detachment Acceptance • Q Q U A L I T Y O F L I F E OVERVIEW OF FINDINGS I L L N E S S E X P E R I E N CE R E L O C A T E T O K I N G S T O N

7. HD Patient Conceptualization of their Illness Experience Living with ESKD Living in Kingston Negotiating Physical Symptoms Challenges Encountered Relocation Adjusting to HD treatment Coping Strategies Choosing HD treatment Cree HD Patient Family and community support Cultural connection Northern community context

8. S T A G E S Experience uremic symptoms Admitted to WHG Air Ambulance to KGH Learn how to live with ESKD Learn how to live in Kingston Consequence of death without HD treatment Acutely ill in-patient at KGH HD only option for survival Discharged and remain in Kingston Onset of ESKD Referred to the pre-dialysis clinic to see a DR Healthy RELOCATE HD Patient Conceptualization of their Illness Experience Deterioration of health and QoL across illness experience

9. 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

10. THANK YOU