Aboriginal and Torres Strait Islander women’s experiences of living with urinary incontinence

Introduction Urinary incontinence (UI) refers to the intermittent or continuous involuntary loss of urine, with an estimated prevalence of 31% among Australian women in 2023, and minimal data on the prevalence of UI among Aboriginal and Torres Strait Islander women. There are many social, economic, physical, and psychological consequences of UI for the individual, society and healthcare services. This research aimed to describe Aboriginal and Torres Strait Islander women’s experiences of living with UI, and with healthcare services. Method Aboriginal and Torres Strait Islander women, attending an urban Indigenous primary healthcare service, participated in semi-structured interviews. They described their understanding and experiences of living with and managing UI, its impacts on their everyday living, and with healthcare services including treatments. Results Twenty-three Aboriginal and Torres Strait Islander women, aged ≥40 years, participated in the interviews. Five themes identified from synthesis of information from all interviews included describing UI; managing incontinence; treatments for incontinence; challenges of living with incontinence; and strengthening the delivery of health services. Participants understanding of UI reflected their individual experiences. Strategies used for managing UI included acceptance, containment aids and controlling frequency of UI. Participants identified many negative consequences of UI on daily living, and strategies to enhance health care services. Conclusion The research findings have identified the need for a comprehensive primary health services model of care to increase awareness, dispel myths, identify women at risk of, or experiencing UI, and provision of appropriate individualised conservative and specialist treatments.