Persons’ Experiences of Suffering from Nephrotic Syndrome

BACKGROUND: Little is known about health and wellbeing among patients with nephrotic syndrome (NS), despite it being a serious condition in patients with renal failure. In order to promote health, it is important that both healthcare professionals and patients are aware of the signs and symptoms of the disease. OBJECTIVES: The aim was to explore patients’ experience of suffering from nephrotic syndrome. DESIGN: An inductive, qualitative method. PARTICIPANTS: Ten adult patients with either newly diagnosed or a relapse of NS treated in a University hospital, south of Sweden from February 2016 to February 2019. MEASUREMENTS: Data were collected using open‐ended interviews and analysed by means of Lindseth and Norberg's phenomenological‐hermeneutical method. RESULTS: Suffering from NS meant being a stranger in an unfamiliar world of symptoms, signs and medical treatment without professional guidance or piloting, illustrated by four themes: Feeling ill and well at the same time, Being passively adherent, Being in uncertainty, and Trying to comprehend and cope. IMPLICATIONS FOR PRACTICE: The result provides an in‐depth understanding of the illness experience among patients with NS and constitutes a foundation for clinical guidelines on treatment, follow‐up and health promotion. CONCLUSION: Patients with NS end up in a state of ambiguity due to a profound knowledge deficit that causes uncertainty and a lack of self‐management. The experienced lack of professional self‐management support is partly compensated for by social support from relatives, enabling those with NS to manage everyday life in a reasonable way.