A qualitative study of family caregiver experiences of managing incontinence in stroke survivors

Abstract

Background: Incontinence is a common problem faced by family caregivers that is recognized as a major burden and predictor of institutionalization. However, few studies have evaluated the experiences of family caregivers caring for stroke survivors with incontinence. Purpose: To describe experiences of caregivers managing incontinence in stroke survivors. Design: This qualitative descriptive study employed a grounded-theory approach. Methods: Semi-structured in-depth interviews with ten family caregivers of stroke survivors with incontinence were conducted during 2011. Audiotaped interviews were transcribed and analyzed using content analysis. Findings: Data analysis identified four themes: chaos, hypervigilance, exhaustion, and creating a new life. There were nine related subcategories: fluster, dirtiness, urgency, fear of potential health-hazard, physically demanding and time-consuming, mentally draining, financial burden, learning by doing, and attitude adjustment. Together, these described a process of struggling to cope with the care of stroke survivors with urinary/fecal incontinence. Of the four categories, "creating a new life" developed gradually over time to orient caregivers to their new life, while the other three categories occurred in a chronological order.