Category: Unsayable

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Holding secrets while living with life-threatening illness: Normalizing patients’ decisions to reveal or conceal.

Our research team has published an article about how patients hold secrets and the role these secrets may play regarding health and illness.

Abstract: Communicating openly and directly about illness comes easily for some patients, whereas for others fear of disclosure keeps them silent. In this article, we discuss findings about the role of keeping secrets regarding health and illness. These findings were part of a larger project on how people with life-threatening illnesses re-story their lives. A narrative approach drawing on Frank’s dialogical narrative analysis and Riesman’s inductive approach was used. Interviews were conducted with 32 participants from three populations: chronic kidney disease, HIV/AIDS, and cancer. Findings include case exemplars which suggest keeping secrets is a social practice that acts along continuums of connecting–isolating, protecting–harming, and empowering–imprisoning. Keeping secrets about illness is a normative practice that is negotiated with each encounter. Findings call health-care providers to rethink the role of secrets for patients by considering patient privilege, a person’s right to take the lead in revealing or concealing their health and illness experience.

Reference:  Bruce, A., Beuthin, R., Sheilds, L., Molzahn, A., & Schick-Makaroff, K. (2019). Holding secrets while living with life-threatening illness: Normalizing patients’ decisions to reveal or conceal. Qualitative Health Research, , 104973231988771. doi:10.1177/1049732319887714

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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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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