Illness Narratives Through the Eyes of Parents of Children With End-Stage Renal Disease

摘要

The purpose of the present study was to learn about the experiences of parents of children diagnosed with renal failure at different stages of the disease in order to get closer to the process they carry out as caregivers. Semi-structured interviews were conducted with 12 parents and analyzed using interpretative phenomenological analysis method. Data analysis revealed two axes: spatial and temporal. The present article focuses on the temporal axis comprised of diagnosis, coping, and remission. These phases are discussed according to Frank’s illness narratives of chaos, quest, and restitution, representing stages in the sequence people undergo while coping with a disease. However, in the case of incurable diseases, such as end-stage renal disease, when there is no restitution and regression in the medical condition is followed by chaos, we suggest a new narrative structure, the Sisyphean Narrative, to symbolize the recurring nature of struggling with the disease.