Category: Journal Publications

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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.

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Stories of Chronic Kidney Disease: Listening for the Unsayable

The aim of this paper is to explore individuals’ stories of chronic kidney disease, particularly those aspects of experience that are difficult to discuss using language (i.e. unsayable).

Abstract:  Chronic kidney disease (CKD) is frequently described as a chronic illness. It is also a life-threatening illness, although this is rarely discussed. When people with CKD face declining kidney function, they need technological assistance to extend life. Many people receiving treatment will also die within 5 years. The experience of living with CKD is often difficult to articulate, and little is known about the aspects of this illness that are often ineffable, difficult to discuss, or beyond words. The purpose of this dissertation is to present four papers in which I investigate the concept of the unsayable and illuminate how this concept may be helpful in exploring individuals’ stories of living with CKD. Located in social constructionism, this narrative research explores the unsayable aspects of experience for people living with CKD as portrayed through their stories and symbols. In the first paper, I present a concept analysis of the unsayable and I define the unsayable as that which is not expressed yet alluded to through language and may be conscious or unconscious. Although the unsayable is intertwined with language, it also transcends articulation. In the second paper, I offer a qualitative meta-synthesis and I show how people with kidney failure have experienced restricted freedom that brings about distant connection, dependent autonomy, abnormal normalcy, and uncertain hope. In the third paper, I present a narrative inquiry using secondary analysis of 46 interviews conducted over 3 years with 14 people living with CKD. Narrative expressions of the unsayable include the following: living with death, embodied experiences that were difficult to language, that which was unthinkable, unknowable mystery, and that which was untold / unheard. Lastly, I offer a narrative visual analysis of symbols that represent living with CKD for 13 participants. Descriptive themes of the symbols include hopes and inspirations, reflections on ?who I am,? and confrontations of illness. Participants’ expressions through symbols are described through stories of memories, emotions, and poetic devices. Consideration of the unsayable may offer insights for nurses who work to support individuals and promote quality of life for those living with this chronic and life-threatening illness.

Reference: Schick Makaroff, K., Sheilds, L., & Molzahn, A. (2013). Stories of Chronic Kidney Disease: Listening for the Unsayable. Journal of Advanced Nursing, 69(12), 2644-2653. doi: 10.1111/jan.12149. PMID: 23594086.

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Lessons Learned about Art-Based Approaches for Disseminating Knowledge

In this paper we discuss some of the key lessons we learned in organizing an art exhibit and other forms of art-based approaches to communicating narratives.

Abstract:

Aim: To present a case example of using an arts-based approach and the development of an art exhibit to disseminate research findings from a narrative research study.

Background: Once a study has been completed, the final step of dissemination of findings is crucial. In this paper, we explore the benefits of bringing nursing research into public spaces using an arts-based approach.

Data Sources: Findings from a qualitative narrative study exploring experiences of living with life-threatening illnesses.

Review Methods: Semi-structured in-depth interviews were conducted with 32 participants living with cancer, chronic renal disease, or HIV/AIDS. Participants were invited to share a symbol representing their experience of living with life-threatening illness and the meaning it held for them.

Discussion: The exhibit conveyed experiences of how people story and re-story their lives when living with chronic kidney disease, cancer or HIV. Photographic images of symbolic representations of study participants’ experiences and poetic narratives from their stories were exhibited in a public art gallery. The theoretical underpinning of arts-based approaches and the lessons learned in creating an art exhibit from research findings are explored.

Conclusion: Creative art forms for research and disseminating knowledge offer new ways of understanding and knowing that are under-used in nursing.

Implication for Practice/ Research: Arts-based approaches make visible patients’ experiences that are often left unarticulated or hidden. Creative dissemination approaches such as art exhibits can promote insight and new ways of knowing that communicate nursing research to both public and professional audiences.

Reference: Bruce, A., Makaroff, K. L. S., Sheilds, L., Beuthin, R., Molzahn, A., & Shermak, S. (2013). Lessons Learned about Art-Based Approaches for Disseminating Knowledge. Nurse Researcher, 21(1), 23-28.

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The unsayable: A concept analysis

One of the members our research team, Kara Schick-Makaroff has published her concept analysis on the unsayable found.  The conclusion of the resulting paper, emphasizes that “although literature on the unsayable has been developed primarily outside the discipline of nursing, exploration of the concept within nursing may assist nurses to consider situations and experiences that are challenging, elusive, and perhaps impossible for patients to language while living amid illness“.

 

Abstract: 

Aim: To report an analysis of the concept of the unsayable.

Background: Within nursing, there is recognition that not all experiences of illness can be fully voiced and therefore may be unsayable. However, focus has been on that which is sayable, those experiences that can be communicated through language, leaving the unsayable unexamined. There is little examination of the meaning or relevance of the concept for nursing practice.

Data Sources: The literature search was not limited by date and includes English, peer-reviewed texts in the databases CINAHL, Web of Science, and PsychINFO from 1959-2011.

Design: Rodgers’ method of evolutionary concept analysis was used.

Review Methods: References were read and analyzed according to surrogate terms, related concepts, attributes, antecedents, and consequences.

Results: Three surrogate terms, one related concept, four attributes, four antecedents, and two consequences were identified in this concept analysis. Based on this analysis, the unsayable refers to what is not expressed yet alluded to through language and may be conscious or unconscious. The meaning of this concept differs substantially between psychology and nursing.

Conclusion: Although literature on the unsayable has been developed primarily outside the discipline of nursing, exploration of the concept within nursing may assist nurses to consider situations and experiences that are challenging, elusive, and perhaps impossible for patients to language while living amid illness.

Reference: Schick-Makaroff, K. (2013). The unsayable: A concept analysis. Journal of Advanced Nursing, 69(2), 481-492. doi: 10.1111/j.1365-2648.2012.06083.x. PMID: 22765505

https://www.ncbi.nlm.nih.gov/pubmed/22765505

https://www.researchgate.net/publication/228329620_The_unsayable_A_concept_analysis

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Symbolic representations of living with chronic kidney disease

Our team has published an article on ‘Symbolic representations of 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.

Refefence: Schick-Makaroff, K., Sheilds, L., & Molzahn, A. (2013). Symbolic representations of living with chronic kidney disease. Nephrology Nursing Journal, 40(6), 517-526. PMID: 24579398

https://www.ncbi.nlm.nih.gov/pubmed/24579398

https://www.researchgate.net/publication/260439591_Symbolic_Representations_of_Living_With_Chronic_Kidney_Disease

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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.

 

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People Living with Serious Illness: Stories of Spirituality

In this paper we examine stories of spirituality in people living with serious illness.

Abstract:

Aim: To examine stories of spirituality in people living with serious illness.

Background: Although knowledge about the experience of people with various chronic illnesses is growing, there is little known about peoples’ beliefs and perspectives relating to spirituality where there is a diagnosis of a serious

Design of the Study: A social constructionist approach to narrative inquiry was used.

Methods: In-depth narrative interviews were conducted on one occasion with 32 participants. This included 10 people with cancer, 14 people with end stage renal disease (ESRD) and eight people with HIV/AIDS. They ranged in age from 37-83 and included 18 men and 14 women.

Results: The themes were reflecting on spiritual religious and personal beliefs, crafting beliefs for their own lives, finding meaning and transcending beyond words. Participants melded various belief systems to fit their own lives. They also looked to find meaning in their illness experience and described what gave life meaning. For some aspects of these belief systems, participants could not or would not express themselves verbally, and it seemed that aspects of their experience were beyond language.

Conclusions: The stories revealed considerable depth relating to perspectives on life, illness and existential questions, but many participants were not comfortable with the term ‘spirituality’.

Relevance to Clinical Practice: Nurses must remain open to learning about belief systems of each individual in their care, regardless of that individual’s declared religious affiliation or declaration of no religious affiliation, given that personal beliefs and practices do not always fit into specific categories.

Reference: Molzahn, A., Sheilds, L., Bruce, A., Stadjuhar, K., Schick Makaroff, K., Beuthin, R. & Shermak, S. (2012). People Living with Serious Illness: Stories of Spirituality. Journal of Clinical Nursing, 21(15-16), 2347-2356.

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Language and the (Im)possibilities of Articulating Spirituality

In this publication we  explore spirituality and the incompleteness of definitions used to describe spirituality.

Abstract: Despite growing interest in spiritual matters throughout society, definitions and descriptions of spiri-tuality seem incomplete or otherwise unsatisfactory. In this article, the authors consider the possibility that such incompleteness is perhaps necessary and welcomed in addressing spirituality. In particular, they investigate the challenges of using metaphor and metonymic approaches to “languaging” spiritual-ity. By exploring these figures of speech they hope to diversify how nurses articulate deeply personal and perhaps enigmatic human phenomena such as spirituality. Metaphoric language uses everyday structures to help make sense of complex, emotional, and abstract experience. Whereas metaphor cre-ates substitutive relationships between things and provides insights into conceptualizing spirituality, metonymy and metonymic writing establish relationships of contiguity. Whereas metaphor functions to represent and facilitates understanding and feelings about spirituality, metonymy disrupts while open-ing possibilities of moving beyond binary thinking. Attending to language and its various ontological assumptions opens diverse and potentially more inclusive possibilities.

Refefence: Bruce, A., Sheilds, L., & Molzahn, A.  (2011). Language and the (Im)possibilities of Articulating Spirituality.  Journal of Holistic Nursing, 29(1), 44-52.