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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.

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Learning from Stories of People with Chronic Kidney Disease

Our publication that explored how people with chronic kidney disease described their experiences of liminality associated with chronic kidney disease and treatment.

Abstract: The purpose of this study was to explore how people with chronic kidney disease (CKD) describe/story experiences of liminality associated with CKD and its treatment. This narrative inquiry was undertaken using secondary data. The people relating the stories described a number of liminal spaces, including living/not living, independence/dependence, restrictions/freedom, normal/not normal, worse off/better off, and alone/connected. Awareness of the liminal spaces can help nurses provide care that addresses the complexity of CKD

Reference: Molzahn, A., Bruce, A., & Sheilds, L. (2008). Learning from Stories of People with Chronic Kidney Disease. Nephrology Nursing Journal, 35(1), 13-20.