Category: Uncertainty

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Life and priorities before death: A narrative inquiry of uncertainty and end of life in people with heart failure and their family members

Our research team has published an article in the   European Journal of Cardiovascular Nursing: https://doi.org/10.1177/1474515120918355 

Abstract:
Background: Most patients with advanced heart failure are ill-prepared and poorly supported during the end of life. To date, research has focused primarily on generalized patient accounts of the management or self-care phase of the
syndrome. Little research has examined the end of life in depth or from the perspectives of family members.

Aims: The purpose of this study is to describe how people diagnosed with heart failure and their family members describe uncertainty related to impending death.

Methods and results: A narrative inquiry was undertaken using a social constructionist perspective. Twenty participants took part in over 60 interviews: 12 participants with heart failure (eight male and four female; mean 67.3 years) and eight family members (mean 61.6 years) engaged in two in-depth interviews, approximately 3–4 months apart, followed by a telephone follow-up 2–3 months later. Six key themes/storylines were identified. These included: prognosis messages received from physicians; whenever I die, I die; loss isn’t new to me but . . . ; carrying on amidst the
fragility of life; ultimately living not knowing; and the need to prepare.

Conclusion: The six key storylines of death and dying with advanced heart failure were consistent for both patients and family members. There was a desire for better communication with physicians. Many participants were critical of how the prognosis of advanced heart failure was communicated to them, even if they anticipated the news. Participants wanted frank, open conversations with their healthcare providers that both acknowledged that they were at end of life but did not remove all hope.

Reference:  Molzahn, A. E., Sheilds, L., Bruce, A., Schick-Makaroff, K., Antonio, M., & Clark, A. M. (2020). Life and priorities before death: A narrative inquiry of uncertainty and end of life in people with heart failure and their family members. European Journal of Cardiovascular Nursing, 1474515120918355.

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Stories of Liminality: Living with Life-threatening Illness

In this publication, we examine the  liminal experiences of living with the uncertainty of life-threatening illness.

Abstract:

Purpose: The purpose of the study is to examine liminal experiences of living with the uncertainty of life-threatening illness. Increasing numbers of people with life-threatening illness live in-between the promise of treatment and the threat of recurrence or progression of disease, and yet this experience is not well understood. Design: A narrative inquiry methodology within a constructionist frame was used. Method: Semistructured in-depth interviews were conducted with 32 participants from three populations of interest: (a) 10 people living with cancer, (b) 13 people with chronic renal disease, and (c) 9 people living with HIV/AIDS. Findings: An overarching theme of “pervasive liminality” and four narratives are identified: storying into fear(lessness), being alive but not living; knowing and not knowing, and the (in)visibility of disease. Conclusions: Over time, living with a life-threatening illness produces complex and paradoxical experiences that do not easily fit within familiar categories of experience. Findings highlight pervasive liminal experiences as in-between narratives that are neither problematic nor need to be resolved, and endure over time.

Reference: Bruce, A., Sheilds, L., Molzahn, A., Beuthin, R., Schick-Makaroff, K., & Shermak, S. (2014). Stories of Liminality: Living with Life-threatening Illness. Journal of Holistic Nursing, 32(1), 35-43.

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Symbolic Representations of Living with Chronic Kidney Disease

In this article we share stories of symbols that represent the experiences of individuals living with chronic kidney disease.

Abstract: Visual or aesthetic data can contribute to understanding experiences that may not be able to be fully understood through spoken or written words. This article describes stories of symbols that represent the experiences of individuals living with chronic kidney disease. Symbols included both objects (i.e., a family photograph) and intangible representations (i.e., apiece of music) that were chosen because they innately held meaning to the person. Descriptive themes of the symbols included hopes and inspirations, reflections on “who I am,” and confrontations of illness. Participants’ expressions through symbols were further described through the use of stories of memories, emotions, and poetic devices. We contend that symbols convey aspects of experience that cannot easily be translated into oral expression.

Reference: Schick Makaroff, K., Sheilds, L., & Molzahn, A.E. (2013). Symbolic Representations of Living with Chronic Kidney Disease. Nephrology Nursing Journal, 40(6), 517 – 530.