Illness experience and perceived quality of life of Cree from the Mushkegowuk Territory with end-stage kidney disease relocated to an urban centre for hemodialysis

Remote Aboriginal communities in Canada struggle with the impact of end-stage kidney disease (ESKD). Three life-sustaining renal replacement options include peritoneal dialysis (PD), hemodialysis (HD) or a kidney transplant. HD is the most common modality however, in remote communities PD is the modality of choice as access to HD treatment often necessitates moving to larger urban centers. People from the remote northern communities of the Mushkegowuk Territory in Northern Ontario must relocate to Kingston, in Southeastern Ontario, for HD treatment at Kingston General Hospital (KGH). The purpose of this investigation was to: (a) describe the illness experience of Cree Aboriginal persons from remote communities receiving HD in an urban center, and (b) to explore the impact of this relocation on their perceived quality of life (QoL). An instrumental, embedded, single case study approach was used to obtain the perspectives of Aboriginal HD patients (n=4) nephrologists (n=3) nephrology nurses (n=3) and cultural support workers (n=3). Data sources included individual interviews, direct participant observation, and analytical journaling. Nvivo7 software was used to assist with data management. The cultural complexity of the Cree illness experience with respect to HD treatment and management of ESKD in an urban center was emphasized by the following findings: (a) nephrologists demonstrated a socially-conscious delay in the referral for Cree patients who required HD treatment to KGH due to the anticipated social and emotional stressors they would experience in the Kingston community, (b) the illness experience of the Cree patients relocated to Kingston for HD treatment consisted of two phases the acute phase of adjusting to living with ESKD and the chronic phase of adjusting to living in Kingston, (c) relocation to Kingston resulted in social isolation and cultural separation which negatively impacted the perceived QoL of Cree HD patients, and (d) demonstrates the divergence of Cree and healthcare providers beliefs which impacted the clinical interactions between patients and healthcare providers. Finally, the Cree HD patients and the investigator each developed models of the Cree illness experience and QoL which were vastly different another demonstration of the impact of culture and environment when interpreting the same situation.