Understanding the impact of incontinence on Veterans’ self-management strategies, quality of life and treatment experiences

BackgroundUrinary and fecal incontinence contribute to significant quality of life impairments for patients and caregivers. Preliminary research suggests that incontinence rates may be higher among Veterans. However, few studies have examined incontinence experiences among Veterans and their caregivers.ObjectivesWe aimed to demonstrate the feasibility of conducting a one-year, telephone survey with Veterans and their caregivers to help inform larger studies. By including both Veteran and caregiver perspectives, we explored how incontinence impacts Veterans’ self-management strategies, quality of life, and treatment experiences.DesignWe used a mixed methods design, employing quantitative (i.e., cross-sectional survey) and qualitative approaches (i.e., semi-structured interviews).ParticipantsOur sample included 64 Veterans with urinary incontinence, fecal incontinence, or mixed incontinence, and 36 caregivers. A subset of 18 Veterans and 8 caregivers completed semi-structured interviews.MethodsData were collected via telephone surveys over the course of 1-year from a small research team at the Veterans Health Administration (VHA). Participants completed measures about the Veteran’s incontinence severity, quality of life, and VHA treatment experiences. Interviews asked participants about their perceptions and satisfaction in receiving treatment for the Veterans’ incontinence. Qualitative themes were extracted using a Rapid Assessment Process model.ResultsVeterans’ self-reported physical quality of life correlated negatively and significantly with both urinary and fecal incontinence severity, as well as negatively and significantly with urinary continence bother (rs range: −.36 to −.47, ps < .01). Veterans’ mental quality of life correlated negatively and significantly with urinary incontinence bother (r = −.43, p < .001). About 67% Veterans experienced incontinence symptoms for 5-years or more, yet 44% waited at least 1-year to discuss incontinence with a VHA provider. Most Veterans (92%) reported speaking with a VHA provider about incontinence, while only 42% reported speaking with a non-VHA provider. Qualitative findings revealed that, upon speaking to a provider, Veterans felt comfortable but also desired more incontinence education from their providers, including obtaining more appropriate and tailored treatment options. While most Veterans followed their provider’s treatment recommendations, some felt unsatisfied with treatments that they perceived as embarrassing.ConclusionsRecruiting a substantial sample of Veterans with incontinence, and their caregivers, is feasible using our recruitment methods, which can inform larger studies. Our study revealed that incontinence symptoms interfere significantly with the quality of life of Veterans and their caregivers. Intervening at the healthcare level by educating providers and systematizing inquiry into incontinence for higher risk populations would be fruitful to explore.Contribution of the PaperWhat is already known about this topic?Urinary incontinence is more prevalent than fecal incontinence, and both are associated with significant impairments in physical, mental, and social functioning.Urinary and fecal incontinence become more prevalent with older age and additional chronic health conditions.There is a lack of incontinence diagnoses documented in Veteran’s medical records, even when incontinence is present. Few studies have reported on caregiver burden related to incontinence care.What this paper addsThis study is the first to report on the potential delay between Veteran’s experiencing symptoms of incontinence and informing their healthcare provider or caregiver about those symptoms (sometimes 5-years or more).Insights on Veteran and caregiver satisfaction with incontinence care can guide healthcare interventions to improve incontinence care.Both Veteran quality of life and caregiver burden correlated significantly and negatively with satisfaction with incontinence treatments tried and number of treatments tried. Only 21% of Veterans were satisfied with the treatment plan they were given, suggesting a potential knowledge gap or opportunity for improvement in healthcare provider approaches to incontinence management.