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 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

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

4. 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

5. HD PatientsNephrologists 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

6. I L L N E S S E X P E R I E N C E RELOCATE TOKINGSTONRELOCATE TOKINGSTON MUSKEGOWUKTERRITORYMUSKEGOWUKTERRITORY LATEHDREFERRALLATEHDREFERRAL 0 mo FULLFUNDING FULLFUNDING 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 FUNDIGNALTEREDFUNDIGNALTERED 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

7. 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

8. HD Patient Conceptualization of their Illness Experience STAGES STAGES 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

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