Stories of chronic kidney disease: listening for the unsayable.




Schick Makaroff, Kara Lee

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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.



unsayable, chronic kidney disease, kidney failure, narrative inquiry, narrative visual analysis, concept analysis, qualitative meta-synthesis, nursing, renal