By Robbyn Lanning
Living with death and dying is a reality for many of those diagnosed with chronic disease. Experiences of dying are often difficult, if not impossible, to express. As a result, many people coping with chronic disease focus on the positive and hopeful aspects of treatment. In the case of nephrology patients, treatment could mean dialysis or kidney transplant(s) resulting in life extension. Even when treatments are successful however, the possibility of death is always present. For those receiving kidney dialysis this is especially true; a patient can choose to stop treatment at any time, with the body ceasing to function within 4 to 10 days as consequence.
Little is known about the experiences of living with chronic kidney disease that are difficult to discuss, ineffable, and beyond words. These unsayable aspects of experience may be expressed consciously or unconsciously through indirect and non-verbal means. UVic School of Nursing doctoral candidate Kara Schick Makaroff’s qualitative research works to give voice to the unsayable ideas and concerns faced by those living with incurable kidney disease. By employing narrative inquiry as a methodological approach, Schick Makaroff ensures that the unsayable is acknowledged and communicated, thus addressing a need to know
what is happening in the lives of people affected by end-stage renal disease.
Schick Makaroff’s research includes secondary analysis of interviews with people living with chronic kidney disease who are living with dying (Interviews were originally conducted in the Re-stor(y)ing Life Within Life-threatening Illness project; Dr. Sheilds, PI). These patients make meaning from their experiences by relating stories about their lives. Part of the discussion with patients involves visual elicitation: the discussion of objects, symbols, photographs and images significant to, and representative of, the patient’s lived experience. By engaging in a visual analysis of images and objects, patients are able to create dialogue regarding aspects of their illness that they may have previously found incommunicable. Schick Makaroff believes that “stories beget stories.“ In sharing their stories through research, these patients make their experiences accessible to the community — not just health care professionals. Schick Makaroff and the Re-stor(y)ing Team plan to further expand the reach of their research through an exhibition of the symbols, images and stories from participants’ lives.
Schick Makaroff begins her post-doctoral studies with Dr. Anita Molzahn at the University of Alberta School of Nursing this Fall. She has been awarded a 3-year funded position as a post doctoral fellow with the Kidney Research Scientist Core Education and National Training Program (KRESCENT). Funding through KRESCENT is provided through the Kidney Foundation of Canada, CIHR, and Canadian Society of Nephrology.
From 2011 Summer Communiqué
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