title: Feeling Well and Having Good Numbers: Renal Patients' Encounter With Clinical Uncertainties and the Responsibility to "Live Well".
abstract: Individuals living with chronic kidney disease (CKD) must be mindful of their diet and exercise, take multiple medications, and deal with other compounding illnesses. We observed renal patients' encounters with health professionals at a renal clinic for tensions and gaps in patients' and health professionals' understandings of "living well" with CKD. We found that the renal patients at the clinic become emotionally invested in the fluctuations in the numbers on their blood work. Narrative practices of health professionals greatly affect how patients emotionally deal with the possibility of dialysis, transplant, death, or aging. Expectations to "live well" can become a moral burden to be a "good" patient. The gaps between the priorities of patients, their caregivers, and health professionals complicate the notion of "living well" with CKD. Trust, rapport and the practice of listening appear to have the greatest impact in addressing these gaps.
authors.affiliation: British Columbia Centre for Excellence in HIV/AIDS, Vancouver, British Columbia, Canada hkang@cfenet.ubc.ca.
authors.forename: Helen
authors.initials: H
authors.lastname: Kang
authors.affiliation: Karolinska Institutet, Stockholm, Sweden.
authors.forename: Terese
authors.initials: T
authors.lastname: Stenfors-Hayes
mesh_terms: D017028:Caregivers; D004644:Emotions; D015438:Health Behavior; D006801:Humans; D011369:Professional-Patient Relations; D006435:Renal Dialysis; D051436:Renal Insufficiency, Chronic; D035501:Uncertainty
keywords: North America; conversation analysis; ethics / moral perspectives; health care, teamwork; illness and disease, chronic; nephrology; observation, participant; qualitative; relationships, patient–provider