Category: Kidney Disease

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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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Contrasting Stories of Life-threatening Illness: A Narrative Inquiry of People Living with Cancer, Chronic Kidney Disease and HIV

In this publication we explore  and contrast how people story and re-story living with cancer, chronic kidney disease and HIV.

Abstract:

Background: Advances in science and technology have resulted in longer lives for people with life-threatening illnesses. However, little research compares the stories of people with different life-threatening illnesses.

Objectives: The objectives of this study were to explore and contrast how people story and re-story life-threatening illness specifically cancer, chronic kidney disease (CKD) and HIV.

Design: Narrative inquiry within a social constructionist perspective was used.

Methods: A total of 113 in-depth interviews were conducted with 32 participants over a period of three years.

Participants: Study participants included 32 people: 10 with cancer, 14 with CKD and 8 with HIV/AIDS. Participants varied in age (37-83 years old, mean=61.2 years), gender (17 men and 14 women), location (urban and rural), time post-diagnosis (median=8 years), intensity or invasiveness of treatment, and prognosis (continuous treatment, remission, cure, palliative).

Results: Participants described living with a life-threatening illness as a delicate balance. They focused on living their lives yet were fully and acutely aware of their own mortality. There was an undercurrent of sustained uncertainty that permeated their lives. Stories of life-threatening illness differed across the three illness groups and shifted over time as disease trajectories changed. Each disease brought specific challenges. With cancer, turning points and uncertainty were prominent. With CKD, a stealthy beginning to life-extending treatment through dialysis or transplant was evident, and with HIV, a shift from a perceived death sentence to a focus on hope and living was notable.

Conclusions: Findings revealed that trajectories of illness for participants living with cancer, CKD and HIV are complex and differ markedly across the groups. Narratives shifted across all of the illness groups as participants navigated and re-storied the terrains of their life-threatening illness. Findings illuminated the need for health care providers to focus on person specific and contextualized aspects of the illness experience.

Reference: Sheilds, L., Molzahn, A., Bruce, A., Schick Makaroff, K., Stajduhar, K., Beuthin, R., & Shermak, S. (2015). Contrasting Stories of Life-threatening Illness: A Narrative Inquiry of People Living with Cancer, Chronic Kidney Disease and HIV. International Journal of Nursing Studies, 52, 207 – 215. doi: 10.1016/j.ijnurstu.2014.10.008

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Three presentations from our first study

Following are three presentations from our first study  where people shared their experiences of living with HIV, cancer and renal disease.  People were asked to share symbols that represented living with a life-limiting illness.  The first presentation explores peoples experience of living_with_chronic_kidney_disease, the second  offers narratives_of_life_limiting_illness and the third focuses on storying_and_re-storying_life_limiting_illness

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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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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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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.