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A meta-ethnography to understand the experience of living with urinary incontinence: 'is it just part and parcel of life?'

ABSTRACT: BACKGROUND:Urinary incontinence (UI) is highly prevalent and affects the lives of many men and women. We aimed to conduct a qualitative evidence synthesis (QES) to explore the experience of living with UI and to develop a conceptual model that can help us to understand this experience, and the potential barriers to appropriate healthcare. METHODS:We used the methods of meta-ethnography developed by Noblit and Hare and recently refined for larger studies. Meta-ethnography involves identifying concepts from the studies and abstracting these concepts into a line of argument. We searched for studies that explored the experience of adults with UI. We used the GRADE-CERQual framework to assess confidence in review findings. RESULTS:We screened 2307 titles, 429 abstracts, 107 full texts and included 41 studies (36 unique samples) in the synthesis. We organised the concepts into 26 conceptual categories, which we further abstracted into 6 themes: (1) Am I ill or is this normal? (2) It effects who I am and how I feel; (3) I feel stigmatised, ashamed and guilty; (4) talking can be difficult but it can help; (5) keeping incontinence under control; (6) have I got to the point that I need help? Our model conceptualises living with UI as navigating antagonists: Is UI normal or am I ill? Do I need help or am I managing? Do I keep UI to myself (and manage alone) or do I tell other people (and get the support that I need)? Do I use control strategies that focus on concealing (avoid risky situations, wear pads) versus, I use strategies that focus on improving the bodily function to improve continence. Our model highlights the experience of stigma, shame and guilt which exert a pull towards concealment. CONCLUSIONS:The culture of secrecy and profound sense of shame is barrier to seeking help. An environment which reduces the shame and stigma of UI may help people to switch the focus to strategies that will improve continence, rather than conceal incontinence.

SUBMITTER: Toye F

PROVIDER: S-EPMC6964106 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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A meta-ethnography to understand the experience of living with urinary incontinence: 'is it just part and parcel of life?'

Toye Francine F Barker Karen L KL

BMC urology 20200116 1

<h4>Background</h4>Urinary incontinence (UI) is highly prevalent and affects the lives of many men and women. We aimed to conduct a qualitative evidence synthesis (QES) to explore the experience of living with UI and to develop a conceptual model that can help us to understand this experience, and the potential barriers to appropriate healthcare.<h4>Methods</h4>We used the methods of meta-ethnography developed by Noblit and Hare and recently refined for larger studies. Meta-ethnography involves ...[more]

PMID: 31941470

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Project description:ContextStress urinary incontinence (SUI) and urgency urinary incontinence (UUI) are associated with physical and psychological morbidity, and large societal costs. The long-term effects of delivery modes on each kind of incontinence remain uncertain.ObjectiveTo investigate the long-term impact of delivery mode on SUI and UUI.Evidence acquisitionWe searched Medline, Scopus, CINAHL, and relevant major conference abstracts up to October 31, 2014, including any observational study with adjusted analyses or any randomized trial addressing the association between delivery mode and SUI or UUI ≥1 yr after delivery. Two reviewers extracted data, including incidence/prevalence of SUI and UUI by delivery modes, and assessed risk of bias.Evidence synthesisPooled estimates from 15 eligible studies demonstrated an increased risk of SUI after vaginal delivery versus cesarean section (adjusted odds ratio [aOR]: 1.85; 95% confidence interval [CI], 1.56-2.19; I(2)=57%; risk difference: 8.2%). Metaregression demonstrated a larger effect of vaginal delivery among younger women (p=0.005). Four studies suggested no difference in the risk of SUI between spontaneous vaginal and instrumental delivery (aOR: 1.11; 95% CI, 0.84-1.45; I(2)=50%). Eight studies suggested an elevated risk of UUI after vaginal delivery versus cesarean section (aOR: 1.30; 95% CI, 1.02-1.65; I(2)=37%; risk difference: 2.6%).ConclusionsCompared with cesarean section, vaginal delivery is associated with an almost twofold increase in the risk of long-term SUI, with an absolute increase of 8%, and an effect that is largest in younger women. There is also an increased risk of UUI, with an absolute increase of approximately 3%.Patient summaryIn this systematic review we looked for the long-term effects of childbirth on urinary leakage. We found that vaginal delivery is associated with an almost twofold increase in the risk of developing leakage with exertion, compared with cesarean section, with a smaller effect on leakage in association with urgency.

Project description:Background:Rheumatoid arthritis is an autoimmune disease that causes joint inflammation. It affects around 400,000 people in the UK and 1 million adults in the USA. Given the appropriate treatment, many can have relatively few symptoms. It is therefore important to understand what it is like to live with rheumatoid arthritis and gain insight into peoples' decisions about utilising healthcare. The aims of this study were: (1) to bring together qualitative evidence syntheses that explore patients' experience of living with rheumatoid arthritis and (2) develop a conceptual understanding of what it is like to live with rheumatoid arthritis. Methods:We used the methods of mega-ethnography. The innovation of mega-ethnography is to use conceptual findings from qualitative evidence syntheses as primary data. We searched four bibliographic databases from inception until September 2018 to identify qualitative evidence syntheses that explored patients' experience of rheumatoid arthritis. Results:We identified 373 qualitative evidence syntheses, removed 179 duplicates and screened 194 full text studies. We identified 42 qualitative evidence syntheses that explored the experience of pain or arthritis and 9 of these explored the experience of rheumatoid arthritis. We abstracted ideas into 10 conceptual categories: (1) rheumatoid arthritis is in control of my body (2) rheumatoid arthritis alters reciprocity; (3) rheumatoid arthritis is an emotional challenge; (4) rheumatoid arthritis disrupts my present and future self; (5) the challenge of balancing personal and work life; (6) I am trying to make sense of what is happening; (7) rheumatoid arthritis is variable and unpredictable; (8) rheumatoid arthritis is invisible; (9) I need a positive experience of healthcare, and (10) I need to reframe the situation. We developed a conceptual model underpinned by living life precariously with rheumatoid arthritis. Conclusions:This is the second mega-ethnography, or synthesis of qualitative evidence syntheses using the methods of meta-ethnography. Future research should consider the proliferation of qualitative evidence synthesis in order to avoid duplication of research effort. Our model for rheumatoid arthritis has some important clinical implications that might be transferable to other musculoskeletal conditions.

Project description:BackgroundStress urinary incontinence (SUI) affects 10%-39% of women. Its first-line treatment consists of lifestyle interventions and pelvic floor muscle training (PFMT), which can be performed supervised or unsupervised. Health apps are increasing in number and can be used to improve adherence to treatments. We developed the Tät app, which provides a 3-month treatment program with a focus on PFMT for women with SUI. The app treatment was evaluated in a randomized controlled trial, which demonstrated efficacy for improving incontinence symptoms and quality of life. In this qualitative interview study, we investigated participant experiences of the app-based treatment.ObjectiveThis study aimed to explore women's experiences of using an app-based treatment program for SUI.MethodsThis qualitative study is based on telephone interviews with 15 selected women, with a mean age of 47 years, who had used the app in the previous randomized controlled trial. A semistructured interview guide with open-ended questions was used, and the interviews were transcribed verbatim. Data were analyzed according to the grounded theory.ResultsThe results were grouped into three categories: "Something new!" "Keeping motivation up!" and "Good enough?" A core category, "Enabling my independence," was identified. The participants appreciated having a new and modern way to access a treatment program for SUI. The use of new technology seemed to make incontinence treatment feel more prioritized and less embarrassing for the subjects. The closeness to their mobile phone and app features like reminders and visual graphs helped support and motivate the women to carry through the PFMT. The participants felt confident that they could perform the treatment program on their own, even though they expressed some uncertainty about whether they were doing the pelvic floor muscle contractions correctly. They felt that the app-based treatment increased their self-confidence and enabled them to take responsibility for their treatment.ConclusionsUse of the app-based treatment program for SUI empowered the women in this study and helped them self-manage their incontinence treatment. They appreciated the app as a new tool for supporting their motivation to carry through a slightly challenging PFMT program.Trial registrationClinicalTrials.gov NCT01848938; https://clinicaltrials.gov/ct2/show/NCT01848938 (Archived by WebCite at https://clinicaltrials.gov/ct2/show/NCT01848938).

Project description:BackgroundQuality of life (QoL) in women with urinary incontinence (UI) is mainly affected by UI severity, but it is also affected by the UI subtype, comorbidities, age, and socioeconomic status. e-Health is a new method for providing UI treatment. This study aimed to identify factors with the highest impact on QoL in women that turned to e-health for UI self-management.MethodsWe analysed data from three randomized controlled trials (RCTs) that evaluated e-health treatments for UI. We included baseline data for 373 women with stress urinary incontinence (SUI) and 123 women with urgency/mixed UI (UUI/MUI). All participants were recruited online, with no face-to-face contact. Participants completed two questionnaires: the International Consultation on Incontinence Questionnaire-Urinary Incontinence Short Form (ICIQ-UI SF, range: 0-21 points), for assessing UI severity, and the ICIQ Lower Urinary Tract Symptoms Quality of Life (ICIQ-LUTSqol, range: 19-76 points), for assessing condition-specific quality of life (QoL). To identify factors that impacted QoL, we constructed a linear regression model.ResultsThe mean ICIQ-LUTSqol score was 34.9 (SD 7.6). UI severity significantly affected QoL; the adjusted mean ICIQ-LUTSqol score increased by 1.5 points for each 1.0-point increase in the overall ICIQ-UI SF score (p < 0.001). The UI type also significantly affected QoL; the adjusted mean ICIQ-LUTSqol score was 2.5 points higher in women with UUI/MUI compared to those with SUI (p < 0.001).ConclusionsWe found that women that turned to e-health for UI self-management advice had a reduced QoL, as shown previously among women seeking UI care through conventional avenues, and that the severity of leakage had a greater impact on QoL than the type of UI. Condition-specific factors impacted the QoL slightly less among women that turned to e-health, compared to women that sought help in ordinary care. Thus, e-health might have reached a new group of women in need of UI treatment.

Dataset Information

A meta-ethnography to understand the experience of living with urinary incontinence: 'is it just part and parcel of life?'

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A meta-ethnography to understand the experience of living with urinary incontinence: 'is it just part and parcel of life?'

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