Anita E Molzahn1, Laurene Sheilds2,3,4, Anne Bruce2, Kara Schick-Makaroff1,5, Marcy Antonio6, Lacie White2,7. 1. Faculty of Nursing, University of Alberta, Edmonton, AB, Canada. 2. School of Nursing, University of Victoria, Victoria, BC, Canada. 3. School of Public Health and Social Policy, University of Victoria, Victoria, BC, Canada. 4. Learning and Teaching Support and Innovation, University of Victoria, Victoria, BC, Canada. 5. Can-SOLVE CKD - KRESCENT New Investigator (Canadians Seeking Solutions & Innovations to Overcome Chronic Kidney Disease; Kidney Research Scientist Core Education & National Training Program) Faculty of Nursing, University of Alberta, Canada. 6. School of Nursing and School of Health Information Science, University of Victoria, Victoria, BC, Canada. 7. School of Nursing, University of Ottawa, Ottawa, ON, Canada.
Abstract
AIMS: To describe how people diagnosed with chronic kidney disease and their family members describe uncertainty related to impending death. BACKGROUND: There has been little research about the experiences of people with chronic kidney disease and their family members as they near the end-of-life. We need to understand these experiences to give holistic person-centred care. DESIGN: A narrative enquiry was undertaken using a social constructionist perspective. METHODS: Data were collected in two in-depth interviews, approximately 3-4 months apart, followed by a telephone follow-up 2-3 months later. RESULTS: Eleven people with advanced chronic kidney disease and nine family members/significant others participated. For both participants in the dyad, a number of key themes/storylines were identified. These included recognition that: @life has a boundary, living on the edge, I'm not afraid to die but… and remembering loss and death experiences@. CONCLUSIONS: This enquiry illuminated four key storylines of about death and dying with advanced chronic kidney disease for people with the illness and their family members. Discussion about past experiences with illness, loss, death, and dying can give an entry for discussion about end-of-life. The person with illness and family members often held very similar perceptions and desires, but healthcare professionals' contributions to understanding of the experience were not mentioned. Implications for clinicians include attending to peoples' awareness of death as a distinct opportunity, listening attentively and posing questions that genuinely invite concerns and wishes about end-of-life and living well.
AIMS: To describe how people diagnosed with chronic kidney disease and their family members describe uncertainty related to impending death. BACKGROUND: There has been little research about the experiences of people with chronic kidney disease and their family members as they near the end-of-life. We need to understand these experiences to give holistic person-centred care. DESIGN: A narrative enquiry was undertaken using a social constructionist perspective. METHODS: Data were collected in two in-depth interviews, approximately 3-4 months apart, followed by a telephone follow-up 2-3 months later. RESULTS: Eleven people with advanced chronic kidney disease and nine family members/significant others participated. For both participants in the dyad, a number of key themes/storylines were identified. These included recognition that: @life has a boundary, living on the edge, I'm not afraid to die but… and remembering loss and death experiences@. CONCLUSIONS: This enquiry illuminated four key storylines of about death and dying with advanced chronic kidney disease for people with the illness and their family members. Discussion about past experiences with illness, loss, death, and dying can give an entry for discussion about end-of-life. The person with illness and family members often held very similar perceptions and desires, but healthcare professionals' contributions to understanding of the experience were not mentioned. Implications for clinicians include attending to peoples' awareness of death as a distinct opportunity, listening attentively and posing questions that genuinely invite concerns and wishes about end-of-life and living well.
Authors: Anita E Molzahn; Laurene Sheilds; Marcy Antonio; Anne Bruce; Kara Schick-Makaroff; Robyn Wiebe Journal: Int J Qual Stud Health Well-being Date: 2021-12