Patients' experience of incontinence and incontinence-associated dermatitis in hospital settings: a qualitative study

Abstract

Objective: To explore the experience of patients with incontinence and incontinence-associated dermatitis (IAD) in acute care hospitals and their family caregivers, including their perceptions and management, as well as the impact on their wellbeing. Method: A qualitative exploratory study design was employed in 18 wards across six acute/subacute hospitals in New South Wales, Australia. Patients with incontinence (with or without IAD) were invited to participate. Where interviews were not possible with the patient, their family caregiver was invited to participate. Semi-structured interviews were conducted. Results: There were 45 interviewees in the study; 41 were patients with incontinence (11 of whom had IAD) and four were family caregivers. The experience of incontinence was captured by three themes: ‘incontinence interrupts every aspect of my life’; ‘actively concealing and cloaking’; and ‘perceived as irreversible’. Incontinence was expected by the patients at their age and did not come as a surprise. It was normalised and approached with stoicism. As such, patients self-managed their incontinence by developing strategies to ensure they avoided episodes of incontinence during their stay. Incontinence left patients feeling anxious, embarrassed and with a sense of shame, and they did not communicate these feelings, or engage with health professionals about their incontinence, nor did health professionals discuss their incontinence with them. There was a strong sense of resignation that incontinence was irreversible and nothing could be done to improve it. All participants displayed little knowledge of IAD. The experience of having IAD was characterised by the theme ‘debilitating and desperate for relief’ and was experienced as a particularly painful, itching and burning condition that left patients distressed and irritable. Conclusion: Patients with incontinence in acute settings required further education from health professionals to reduce the stigma of incontinence, and provide further support to manage their incontinence. Health professionals can also play a key role in educating patients about the risks of developing IAD and how it can be prevented.