‘Like a ticking time bomb’: A qualitative study exploring the illness experiences of adults with kidney stone disease

Abstract

AbstractObjectiveKidney stone disease (KSD) is a common, complex and painful urological condition, but how patients make sense of and respond to the challenges of KSD is poorly understood. Using the common‐sense model of illness self‐regulation (CSM‐SR), we aimed to explore the illness experiences of individuals with KSD.DesignA qualitative design using individual semi‐structured interviews.MethodsThirty‐three patients with KSD attending outpatient urology services participated in interviews informed by the CSM‐SR. Data were analysed using reflexive thematic analysis. Themes were mapped onto the domains of the CSM‐SR.ResultsFive main themes were generated, broadly echoing domains within the CSM‐SR: (1) making sense of KSD, (2) normality paused, (3) the psychological burden of KSD, (4) the tensions of managing KSD, and (5) improving understanding of KSD. Additionally, findings suggested that partners' perceptions of KSD were an additional contextual factor that informed patients' own perceptions and management of KSD. Participants appraised initial KSD symptoms as indicative of a serious health threat. Diagnosis brought some relief, however, KSD wielded multi‐dimensional impacts on patients' perceptions, self‐management and well‐being. Anxiety, including fear of KSD recurrence, and low mood were common psychological burdens across narratives.ConclusionThe majority of the themes identified were commensurate with an extended CSM‐SR. This model has utility in informing how patients perceive and manage KSD. Examining patients' KSD representations and routinely assessing for psychological distress may be of benefit to improve health outcomes for this patient group.