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Abstract
Introduction Urinary incontinence (UI) is a common condition among older adults with adverse consequences to health and well-being. Shame, stigma and cultural perspectives can prevent treatment-seeking behaviour. Although there is an abundance of studies in the health research literature that explore the physiological basis of UI, there is limited evidence on the role culture plays in shaping knowledge of, attitudes to and beliefs about UI. This review aims to answer what is known about the role of culture in shaping the attitudes and beliefs on UI to identify gaps in the literature and direct future research.
Methods and analysis The Joanna Briggs Institute method for scoping reviews will be used to conduct the review, in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). The MEDLINE, Embase, PsycINFO, Cumulated Index in Nursing and Allied Health Literature, EBSCOhost, Scopus databases and WHO Index Medicus databases will be searched, without any restriction on language and publication date, enhancing the comprehensiveness and inclusivity of the review. A preliminary search of MEDLINE was conducted (09 February 2024) to identify articles. The screening and analysis of the search results from the databases will be managed using Covidence software. Two authors will screen articles, with a third involved as needed to resolve any differences. Findings will be organised using tables and key themes will be identified.
Ethics and dissemination Formal ethics approval is not required for this review as it does not involve any human or animal participants. Findings will be disseminated in a high-impact peer-reviewed journal with a focus on open-access publication at conferences and used to inform studies on the development of culturally sensitive management programmes for UI with the full involvement of patients.
Trial registration Open Science Framework https://osf.io/3d97f
- GERIATRIC MEDICINE
- Urogynaecology
- Health Literacy
- Urinary incontinences
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STRENGTHS AND LIMITATIONS OF THIS STUDY
This scoping review will be rigorously conducted according to internationally recognised methods.
To ensure consistency and rigour in how cultural elements are extracted, the research team will meet regularly to refine the critical analytical lens through which the data are interpreted.
Given the bidirectionality of religion and culture it may be challenging to tease apart the role of cultural and religious elements in shaping attitudes to and beliefs regarding urinary incontinence.
Cultural elements are not always captured in a publication abstract; hence, some papers may be missed due to limitations of the abstract screening process.
Introduction
Urinary incontinence (UI), defined as the involuntary loss of urine, is a complex public health issue with a range of social and health consequences.1 2 UI can affect anyone at any life stage; however, it most commonly affects multiparous women, older adults, children and people with cognitive or physical impairment.3 4 UI has significant consequences on quality of life, with higher rates of social isolation and depression in those living with UI. Additionally, pressure wounds, urinary tract infections and rates of hospitalisation are all higher in populations with UI than those without UI.5
Although behavioural interventions, medications and surgical interventions can improve the quality of life of those living with UI, cultural and social barriers can prevent health-seeking for the condition.6–8 Cultural values are deeply rooted forces that guide people’s thoughts about their bodies, health-seeking, family involvement in health decisions, complementary medicine, religious beliefs and management of UI.6 8 Culture is a nuanced phenomenon; in the context of this scoping review, culture is defined as a system of concepts, rules, shared ideas and meanings that underlie and are expressed in the way humans live.6 9 The ‘expression’ of culture can be in the form of beliefs, art, action, lack of action, morals and/or any other tangible outcome that provides evidence of cultural beliefs shaping the perception of UI.9
Globally, the availability of healthcare services, like physiotherapy sessions for UI, does not ensure their uptake, given the cultural barriers that exist in diverse settings, such as a difference in caste, family dynamics and a lack of privacy in the joint family setting and blaming ‘destiny’ as a cause of their ‘natural’ problem, given that they are ageing.10 Furthermore, culturally informed health-seeking behaviours become more nuanced through immigration, where ethnic groups move to a country where health services are based on a value system different from their own.11 Identifying the role of culture in influencing health-seeking can inform the design of multifaceted, culturally sensitive healthcare services for the management of taboo conditions like UI.12
Urination is one of the most private human functions, and the occurrence of a UI episode in social situations may lead to shame or embarrassment.13 According to Erving Goffman, a stigmatised identity is based on ‘an attribute that makes one different from others…and of a less desirable kind’.14 In the early 19th century, women with UI were considered ‘contaminated, sexually undesirable, and repulsive outcasts and excluded from social rituals’.15 The stigma of UI can lead to hesitancy in discussing the condition with healthcare providers, which is further exacerbated by societal norms and misunderstandings, as some adults may consider UI to be a normal part of ageing and an untreatable condition.13 Although some literature focuses on the generalised, cross-cultural stigma of UI, stemming from it being a ‘below the belt’ condition, there is a gap in research examining the role of specific factors (eg, culture, religion and folklore) in shaping the nature of stigma and/or restrictions faced by someone experiencing UI.16 There is a dearth of literature that investigates the role of race, ethnicity, culture, religion and folklore on the knowledge, attitudes, beliefs and management practices associated with UI. This review will address culture, both in the sense of an input domain shaping the knowledge, attitudes, beliefs and management practices regarding UI and as an overarching phenomenon.
In addressing its research question, this review aims to go beyond the surface-level stigma of UI and deepen the understanding of the role culture plays in shaping experiences of UI in men and women across the world. This review uses the scoping review methodology as it is most useful for initially mapping the literature on emerging topics and to identify gaps, which will inform future qualitative studies involving UI in diverse populations.17
Review question
What is known about the role of race, ethnicity, culture, religion and folklore on the knowledge, attitudes, beliefs and management practices associated with UI?
Eligibility criteria
Participants
Inclusion criteria
Studies which (a) include a discussion of UI and the role of race, ethnicity, culture, religion and/or folklore, in relation to the knowledge, attitudes, beliefs and/or management practices associated with UI, (b) use either qualitative or mixed methods and (c) all include participants of age 18 years or older will be included. For mixed methods studies, focus will be on the qualitative component for analysis, while highlighting dissonance between qualitative and quantitative findings. Since both women and men are eligible as participants for this review, where sex or gender has been reported as variables, those data will be extracted and analysed separately. It is not necessary for participants to have lived experience of UI. Any experience of UI (eg, lived, as a caretaker or health professional) will be analysed and is considered equally informative for this review. If a study includes participants both under and above 18, only data applicable to adults (18+ years) will be analysed. Studies where all participants are below 18 or where the data are not stratified by age will all be excluded.
Exclusion criteria
Articles that (a) are quantitative, (b) have participants under 18 and/or (c) focus on the overall stigma of UI as a ‘below the belt’ condition without a deeper discussion on the role culture may play in shaping attitudes and beliefs regarding UI and/or (d) are review papers will be excluded. The reference lists of review papers will be explored to identify any other papers meeting the inclusion criteria. Secondary analysis papers will be included if they are derived from a qualitative/mixed methods paper and satisfy all other inclusion criteria.
Concept
The concept is based on adult perspectives on UI and its management, stemming from culture, ethnicity, religion and folklore. Our main focus is on culture as defined above,6 9 and ethnicity, religion and folklore will be viewed either as standalone knowledge or as contributory factors.
Context
Any setting from which there is documentation of the role culture, ethnicity, religion and folklore plays in shaping knowledge, attitudes and beliefs on UI and its management.
Types of sources
Only qualitative and mixed methods, primary research studies will be included for full-text data extraction. This review will focus on qualitative research as it is most suitable for exploring a nuanced phenomenon like culture, requiring an understanding of the human experience, which often cannot be easily put into numbers.18 Reference lists of reviews will be explored to find relevant qualitative studies. A search for full papers of conference abstracts will be performed. A grey literature search will be conducted, in which content identified through Google, blogs, social media and any other unpublished format will be considered for inclusion. General searches will use Google, while targeted searches will explore the subject matter being addressed by national (eg, Canadian Continence Foundation) and international organisations (eg, International Continence Society, World Federation of Incontinence and Pelvic Pain).
Methods and analysis
The scoping review will be conducted based on the Joanna Briggs Institute (JBI) method for scoping reviews and will be reported based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) checklist.19 This protocol was developed using JBI’s scoping review protocol template.20 21
Search strategy
A preliminary search of MEDLINE was conducted by a health sciences librarian (MK) experienced in scoping reviews (09 February 2024), to identify relevant articles and develop the criteria for inclusion and exclusion (online supplemental appendix I). Given the nuances of the topic, several meetings between research team members were executed to refine the search and to obtain relevant articles. Prior to submission for publication, the search will be updated to reflect any newly published studies. The planned start and end dates of this review are 07 February 2025 and 03 April 2025, respectively.
Supplemental material
In the comprehensive search, the following bibliographic databases will be searched: MEDLINE (1946-present), Embase (1974-present) and PsycINFO (1806-present) via OVID, Cumulated Index in Nursing and Allied Health Literature (1936-present) via EBSCOhost, Scopus (1976-present) and the WHO Global Index Medicus (inception to present). Databases will be searched using a combination of natural language keywords and subject headings, such as Medical Subject Headings, wherever they are available. The search strategy will be derived from two main concepts: (1) UI and (2) ethnicity, race, culture, religion, language, tradition, folklore or society. Results will be limited to qualitative literature using a filter adapted from the qualitative filter outlined in McKibbon, Eady, & Marks22 and Evans.23 Mixed methods studies will also be included. To increase search sensitivity, no language or publication date limits will be applied to the results. Translations from two validated online language translators will be compared—Google Translator and DeepL translator for languages other than English (LOTE), in consultation with colleagues who are native speakers of the LOTE.24 25
In addition to academic publications, a grey literature search will be conducted, as recommended by JBI. Grey literature refers to materials that are unpublished or published by sources that are neither academic nor commercial (eg, thesis dissertations, policy documents, blogs and media sources). General and targeted internet searches will be conducted, as discussed above.
Study/source of evidence selection
Results will be exported into Covidence (Veritas software, Melbourne, Aus), a software program that streamlines synthesis review management and collaboration.26 Once the deduplication of results is carried out using Covidence, two reviewers will independently screen the abstracts and titles of 5% of studies identified by the literature search. To ensure reliability between reviewers, inter-rater agreement for study inclusion will be calculated using per cent agreement, and when it reaches >75% across the team, the process will proceed to the next stage.27 28 If lower agreement is observed, reviewers will meet to review and refine the eligibility criteria. The remaining abstracts will be similarly screened with reviewers meeting regularly to discuss selections and record their decisions in Covidence. Each abstract will be independently screened by two reviewers, who will then meet to discuss and finalise a decision regarding exclusion or inclusion. Following abstract screening and a decision to include the paper, full-text versions of all publications will be uploaded to a shared Google Drive folder.
Data extraction
Included full-text papers will be divided among authors who will then meet and come to a consensus about inclusion. Each paper will then have data extracted independently by two reviewers. To ensure accuracy of extraction, the two reviewers will regularly meet to discuss their findings, during which any points that may have been overlooked will be recorded. Disagreements not amenable to consensus will be resolved by a third reviewer. Data will be extracted using a data collection form, inspired by JBI’s data extraction form template (online supplemental appendix II) and created on Microsoft Excel. The data extraction form will include details such as the publication date, location of publication, sample size, aim/purpose of the study, population description, setting, recruitment method, methodology and relevant findings related to the research question.
The data collection form will be refined by having two reviewers test it by independently extracting five studies and meeting to discuss the form’s strengths and weaknesses, modifying it accordingly. Once all studies have been extracted, authors of papers will be contacted if additional information is required. The reference lists of included studies and excluded systematic reviews will be reviewed to find additional qualitative studies that may meet the inclusion criteria. One of the authors will then organise the collected data from the included studies into a spreadsheet, which will be shared with other authors. Reviewers will meet to discuss key findings and themes, which will be communicated through tables, figures and written explanations in a peer-reviewed publication.
Patient and public involvement
Patients or the public were not involved in the conceptualisation, conduct or dissemination plans of this scoping review protocol; however, the findings of this review will be used to inform the design of a concurrent study for the co-creation of a culturally sensitive self-management programme for older Sikh women with UI, in collaboration with the Sikh community. This review may inform further research advocating for the active use of cultural context in providing patient-centred care for UI.
Risk of bias
In accordance with the JBI method for scoping reviews, no quality appraisal will be conducted, as the purpose of this type of review is to provide an overview of existing evidence, as opposed to generating recommendations for clinical practice.29 To ensure rigour, this protocol is registered on the Open Science Framework as a Preregistration (18 June 2024).30
Data analysis and presentation
Given the nature of the topic, the data analysis process will be conducted using the descriptive-analytical method. Any dissonance between the findings of studies relative to each other or most of the included studies will be critically appraised and presented in the final publication. Findings will be presented through tables, charts and figures, accompanied by a narrative summary, in relation to our research question. Results will be reported using the PRISMA-ScR checklist. Depending on the nature of the included studies, results will be stratified according to the economic status of the country (eg, low-income, middle-income or high-income country), social and health context (eg, personal lived experience of UI, caregiver of someone with UI or healthcare provider), ethnicity, race, sex and gender.
Ethics and dissemination
No ethics approval is required for this review as it does not involve any human or animal participants. Findings will be disseminated as presentations at health workshops or conferences, through health blogs and social media/networking sites (eg, Instagram, Linkedln) and peer-reviewed publications. Community partner organisations (eg, local older adult health groups) and patient advisory boards will be engaged to inform the dissemination of findings in lay formats.
Ethics statements
Patient consent for publication
Footnotes
X @adrianwagg
Contributors Author contributions: SP: concept, design, writing, critical analysis, editing and final approval; SR: concept, design, writing, critical analysis, editing and final approval; MK: concept, design, writing, editing and final approval. AW: concept, design, writing, critical analysis, editing and final approval. Guarantor is AW.
Funding This work was supported by internal funds from the Muhlenfeld Family Trust and from graduate scholarship funding, consisting of the CGS-M Canadian Institutes of Health Research (CIHR) Master’s Scholarship and the TD Bank Financial Group Grant for Health Sciences Interdisciplinary Research Fund Award. The funders had no role in conceptualising and designing the protocol and will have no role in further execution, analysis, or reporting.
Competing interests SP: declares research support from the Muhlenfeld Family Trust, CIHR Master’s Scholarship and the TD Bank Research Fund Award.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.