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We just don't talk about it: Men living with urinary incontinence and multiple sclerosis


Professor Tina Koch, Domiciliary Nursing, Flinders University of South Australia, GPO Box 2100, Adelaide, South Australia, Australia.Email:


For people with multiple sclerosis (MS), urinary incontinence can become central to their experiences of managing the consequences of the disease. The Research Unit at the Royal District Nursing Service in South Australia conducted a study between October and December 1998 that aimed to understand how people living with multiple sclerosis manage urinary incontinence. This paper reports the findings from a participatory action research group consisting of four men who lived with MS and urinary incontinence, two continence nurse advisors (CNA) and the researcher. Incontinence was found to be a subject that men had found difficult to talk about previously. Themes that emerged from the conversations with the men were: planning your life around toilets; today will not be the same as tomorrow; managing myself; and motivated to make changes. The men and the CNA experienced a valuable exchange of knowledge about living with incontinence. We consider it essential that the voices of these men are clearly heard so that health-care providers may be responsive and sensitive to their clients' needs.

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