Living normally without being oneself: A qualitative study on the experience of living with advanced chronic kidney disease

Abstract

The aim of the study was to describe and analyze the experience of people with advanced chronic kidney disease. Chronic kidney disease is a growing public health problem that is on the increase worldwideThe experience of living with this illness is paradoxical, as it can include feelings of dependent autonomy, distant connection, abnormal normalcy, and uncertain hope. Every chronic disease involves a biographical alteration from the onset. For those who suffer it, it implies a breaking down and reconstruction of their everyday life. Despite the prevalence of the disease and the increase in the number of qualitative research studies in recent decades, there has not been much research on the experience of people with Chronic kidney disease. This is a qualitative study that began in 2018 and concluded in 2021.Twenty-one people with advanced chronic kidney disease were interviewed. They participated voluntarily with informed consent Participants were selected by purposive sampling. Data analysis was guided by grounded theory procedures using the Nvivo 12 software. This study reveals that people with advanced chronic kidney disease do not feel the same as they used to because their control over their lives is limited; because they feel their health is in a continuous state of deterioration; and because of the changes in themselves and in their relationships with others. With chronic kidney disease, their identity is continually called into question. The normal lives of these people–their biographical constructions–are precarious and are continuously being remodelled by the effects of treatment and the inexorable course of this disease. This study contributes to an understanding of the experience of people with advanced chronic kidney disease. It can contribute to helping health care professionals effectively support these patients in their efforts to lead a normal life and in making decisions about their treatment.