Category: Perceptions of Death and Dying

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Ten minutes to midnight: a narrative inquiry of people living with dying with advanced COPD and their family members.

Our research team has published an article in the International Journal of Qualitative Studies on Health and Well-being

Ten minutes to midnight: a narrative inquiry of people living with dying with advanced COPD and their family 

Abstract:

Purpose: To explore how people with end stage chronic obstructive pulmonary disease and their family members describe living in the face of impending death.

Methods: A narrative inquiry was undertaken using a social constructionist perspective. Data were collected in 2017-18 in two in-depth interviews, lasting 90 to 120 minutes approximately 3-4 months apart, with a telephone follow-up 2-3 months later. Thematic analysis was conducted including analysis within and across participants.

Results: Sixteen people with advanced chronic obstructive pulmonary disease and seven family members participated. For both people with the disease and family members, six key themes/storylines emerged including missing life, being vigilant, hope and realism, avoiding death talk, the scary dying process, and need to prepare.

Conclusion: This study highlighted six key storylines about death and dying with advanced chronic obstructive pulmonary disease for people with the illness and their family members. The participants with the illness and their family members held similar perceptions about end of life. More supports are needed for people with advanced chronic obstructive pulmonary disease and their family members in living with their illness while ensuring that they experience a “good death.”

Reference:  Molzahn, A. E., Sheilds, L., Antonio, M.,, Bruce, A., Schick-Makaroff, K., & Wiebe,R. (2021). Ten minutes to midnight: a narrative inquiry of people living with dying with advanced COPD and their family members. International Journal of Qualitative Studies on Health and Well-being, https://doi.org/10.1080/17482631.2021.1893146

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Living with Dying: A Narrative Inquiry of People with Chronic Kidney Disease and their Family Members

In this open access publication , we explore the experiences shared by people living with chronic kidney disease and their family members:

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.

Reference: Molzahn, A.E., Sheilds, L., Bruce, A., Schick-Makaroff, A.E., Antonio, M., & White, L. (2018). Living with Dying: A Narrative Inquiry of People with Chronic Kidney Disease and their Family Members. Journal of Advanced Nursing.  10.1111/jan.13830

 

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Perceptions Regarding Death and Dying among People with Chronic Kidney Disease

The paper describes perceptions regarding death and dying among people with chronic kidney disease that were shared during our narrative inquiry study.

Abstract: This research explores perceptions regarding death and dying among people with chronic kidney disease. The methodology for the study was narrative inquiry informed by social constructivism. In-depth narrative interviews were conducted on two occasions with 14 participants. The participants included 10 men and 4 women (mean age of 66) who were treated in a mid-size Canadian city. Four themes relating to death and dying emerged from the data: awareness of death as a consequence of kidney failure, close calls, contemplation of suicide and/or withdrawal from dialysis, and preparing for death while living life. From the findings, it appeared that participants were very aware of the risk of dying from their illness, experienced serious health crises, and planned for their deaths. They were comfortable in discussing death and dying and acknowledged withdrawal from dialysis as an option.

Reference: Molzahn, A., Sheilds, L., Bruce, A., Stadjuhar, K., Schick Makaroff, K., Beuthin, R., & Shermak, S. (2012). Perceptions regarding death and dying among people with chronic kidney disease. Nephrology Nursing Journal, 39, 197 – 204.