Social Representations of Urinary Incontinence in Caregivers and General Population: A Focus Group Study

Abstract

Urinary incontinence (UI) is a major public health problem. Although trivialized, it affects nearly 9% of the world’s population and its prevalence increases with age. It affects many people living in nursing homes. In the literature, there is a lot of information on its symptoms, risk factors and therapeutic approaches, but its social representations are rarely studied. The objective of this qualitative focus-group study is to understand the social representations of urinary incontinence of caregivers of institutionalized elderly people, but also of the general population. Seven focus groups were organized with 41 participants. The data collected were analyzed both manually and using Atlas.Ti software. For caregivers and the general population, urinary incontinence remains a misunderstood and disturbing subject: judged as too intimate, embarrassing, and shameful, it is even considered uninteresting by those who are not affected, with some going so far as to make fun of those affected. It is also represented as a real difficulty for relationships: it can be a source of conflict, but also of questioning by the role of caregiver. However, it is also represented as a means of increasing the empowerment of the residents concerned, thanks to the choice of their means of protection. This study has enabled us to gain a deeper understanding of the social representations of caregivers and the general population on urinary incontinence in the elderly, but also to highlight the various preventive and educational actions that could be taken to improve the management of this health problem. It is part of a larger research program that aims at understanding the representations of urinary incontinence of caregivers, the general population, but also of course, of residents in nursing homes and their carers.