Social Processes Informing Toileting Behavior Among Adolescent and Adult Women: Social Cognitive Theory as an Interpretative Lens.

Little is known about social processes shaping adolescent and adult women's toileting behaviors. The "Study of Habits, Attitudes, Realities, and Experiences" (SHARE) examines adolescent and adult women's experiences related to bladder health across the life course. Forty-four focus groups with 360 participants organized by six age groups were conducted across seven sites. A transdisciplinary team used social cognitive theory as an interpretive lens across a five-stage analysis. The act of observing was identified as the overarching social process informing women's toileting behaviors in three ways: (a) observing others' toileting behavior, (b) being aware that one's own toileting behaviors are monitored by others, and (c) observing oneself relative to others. We found that underlying processes of toileting behaviors, seemingly private are, in fact, highly social. We suggest, given this social embeddedness that health promotion efforts should leverage interpersonal networks for "social norming" interventions and policies to promote healthy toileting behaviors.

Novel (Multilevel) Focus Group Training for a Transdisciplinary Research Consortium.

Health researchers are increasingly turning to qualitative research for a nuanced understanding of complex health phenomena. The quality and rigor of qualitative research relies on individual data collector skills, yet few guidelines exist for training multidisciplinary, multi-institution qualitative research teams. Specific guidance is needed on qualitative research practices that ensure scientific rigor by optimizing diverse experience and expertise across research centers. We describe our systematic approach to training a cohort of 15 focus group moderators from seven universities in the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium's Study of Habits, Attitudes, Realities, and Experiences (SHARE). SHARE's aim was to explore women and girls' experiences, perceptions, beliefs, knowledge, and behaviors related to bladder health and function across the life course. Drawing on adult education and action-learning best practices, a three-phase curriculum was designed to maximize moderator proficiency and qualitative research expertise. The phases involved online, interactive web-based education, in-person didactic training with experiential components, and tailored supplemental online training. Evaluative feedback was collected before, during, and after the training. Feedback was used to identify emergent training needs. This training approach may be used by transdisciplinary research teams conducting multisite research to assure qualitative research credibility and trustworthiness.

I never knew anyone who peed on themselves on purpose: Exploring adolescent and adult women's lay language and discourse about bladder health and function.

AIMS: This analysis explored and characterized adolescent and adult women's lay language and discourse related to bladder health/function. METHODS: Forty-four focus groups were conducted across seven United States research centers with 360 adolescents and adult women, organized by six age categories. Multilevel content analyses classified emergent themes. A transdisciplinary lens and inductive approach guided data interpretation. Interpretive insights were validated by a community engagement panel. RESULTS: A repertoire of bladder function terms emerged, including explicit functional terms, formal and polite euphemistic terms, and informal familiar terms, as well as cultural and regional metaphors and idioms. Terminology usage was historically grounded, developmental, and cumulative across the life course. Lay discourse was contextual and affectively valent, suggesting unspoken, commonly understood, situation-based "rules" for talking about bladder function. Discourse appeared to be siloed within family and friendship circles. Adolescents and adult women often described, rather than named, bladder sensations or problems. Terminology for bladder issues tended to minimize severity and frequency, with medical language only relevant to extreme examples and not applicable to mild episodes. CONCLUSIONS: A definitional discordance between medical and lay views of bladder problems was identified, signifying a need to clarify the meaning of medical terms for lay persons. Adolescents and adult women do not have or use standardized precise terminology for bladder health and function, relying instead on social convention and interpersonal context. Findings can be used to foster shared understandings between lay persons and health professionals, informing development of clinical, research, and public health initiatives to promote bladder health.

Applying concepts of life course theory and life course epidemiology to the study of bladder health and lower urinary tract symptoms among girls and women.

AIMS: Although lower urinary tract symptoms (LUTS) may occur at different periods during the life course of women, a little research on LUTS has adopted a life course perspective. The purpose of this conceptual paper is to demonstrate how life course theory and life course epidemiology can be applied to study bladder health and LUTS trajectories. We highlight conceptual work from the Prevention of Lower Urinary Tract Symptoms Research Consortium to enhance the understanding of life course concepts. METHODS: Consortium members worked in transdisciplinary teams to generate examples of how life course concepts may be applied to research on bladder health and LUTS in eight prioritized areas: (a) biopsychosocial ecology of stress and brain health; (b) toileting environment, access, habits, and techniques; (c) pregnancy and childbirth; (d) physical health and medical conditions; (e) musculoskeletal health; (f) lifestyle behaviors; (g) infections and microbiome; and (h) hormonal status across the life span. RESULTS: Life course concepts guided consortium members' conceptualization of how potential risk and protective factors may influence women's health. For example, intrapartum interventions across multiple pregnancies may influence trajectories of bladder health and LUTS, illustrating the principle of life span development. Consortium members also identified and summarized methodologic and practical considerations in designing life course research. CONCLUSIONS: This paper may assist researchers from a variety of disciplines to design and implement research identifying key risk and protective factors for LUTS and bladder health across the life course of women. Results from life course research may inform health promotion programs, policies, and practices.

Prevention of Lower Urinary Tract Symptoms Research Consortium Focus Group Study of Habits, Attitudes, Realities, and Experiences of Bladder Health.

AIM: The study purpose is to explore adolescent and adult women's experiences, perceptions, beliefs, knowledge and behaviors related to bladder health across the life course using a socioecological perspective. Lower urinary tract symptoms affect between 20-40% of young adult to middle-aged women, with symptoms increasing in incidence and severity with aging. There is limited evidence to address bladder health promotion and prevention of dysfunction. This first study of the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium is designed to address gaps in existing qualitative research in this area. DESIGN: This focus group study will be implemented across seven geographically diverse United States research centers using a semi-structured focus group guide informed by a conceptual framework based on the socioecological model. METHODS: The study was approved in July 2017. A total of 44 focus groups composed of 6-8 participants representing six different age categories (ranging from 11 to over 65 years) will be completed. We aim to recruit participants with diverse demographic and personal characteristics including race, ethnicity, education, socioeconomic status, urban/rural residence, physical/health conditions and urinary symptom experience. Up to 10 of these focus groups will be conducted in Spanish. Focus group transcripts will undergo content analysis and data interpretation to identify and classify themes and articulate emerging themes. DISCUSSION: This foundational qualitative study seeks to develop an evidence base to inform future research on bladder health promotion in adolescent and adult women. IMPACT: This study has the potential to provide new insights and understanding into adolescent and adult women's lived experience of bladder health, the experience of lower urinary symptoms and knowledge and beliefs across the life course. This article is protected by copyright. All rights reserved.

The Prevention of Lower Urinary Tract Symptoms (PLUS) in girls and women: Developing a conceptual framework for a prevention research agenda.

AIMS: The Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium was established by the National Institutes of Health in 2015 to expand research beyond the detection and treatment of lower urinary tract symptoms (LUTS) to the promotion and preservation of bladder health and prevention of LUTS in girls and women. While many multi-disciplinary scientific networks focus on pelvic floor dysfunction and LUTS, the PLUS Consortium stands alone in its focus on prevention. This article describes the PLUS approach to developing a conceptual framework to guide the Consortium's initial prevention research agenda. METHODS: The conceptual framework was informed by traditional social ecological models of public health, biopsychosocial models of health, Glass and McAtee's Society-Behavior-Biology Nexus, and the World Health Organization's conceptual framework for action on the social determinants of health. RESULTS: The PLUS conceptual framework provides a foundation for developing prevention interventions that have the greatest likelihood of promoting and preserving bladder health among diverse populations. CONCLUSIONS: PLUS Consortium work is premised on the notion that programs, practices, and policies designed to promote health will have optimal impact if the conceptual foundation upon which efforts are based is comprehensive and informed by multiple disciplines. The PLUS conceptual framework is broadly applicable to domains of health that have historically focused on the treatment of illness and symptoms rather than the promotion of health. It is also applicable to domains of health that have been examined from a predominantly biological or social ecological perspective, without integration of both perspectives.

Adding silver to the rainbow: the development of the nurses' health education about LGBT elders (HEALE) cultural competency curriculum.

AIM: In 2009, the Howard Brown Health Center received funding from the US Department of Health and Human Services, and Health Resources and Services Administration to develop and disseminate a peer-reviewed, six-module curriculum entitled, Health Education about LGBT (lesbian, gay, bisexual and transgender) Elders (HEALE). BACKGROUND: The HEALE curriculum targets nurses and health-care staff and is focused on the treatment of LGBT elders, a population that is largely misunderstood and discriminated against in health-care settings. The HEALE curriculum was presented in hospital academic centres, community-based clinics and nursing homes over a three-year period, and training staff provided education to over 500 nurses and health-care providers. METHOD: A pre-test and post-test was administered to participants, and all data were collected and archived to measure knowledge gained. Participants also completed an evaluation at the conclusion of the training to report change in personal attitude and individual response to the curriculum. RESULTS AND CONCLUSIONS: From March 2011 to June 2012, 848 individuals attended HEALE curriculum sessions at 23 locations in Chicago and surrounding areas. Participants were 40% white, 25% black, 9% Hispanic/Latino and 25% Asian race/ethnicity. The majority of participants were female and approximately 25% were under the age of 30 years. There were statistically significant gains in knowledge in each of the six modules both in nursing home/home health-care settings and in hospital/educational settings, although participants in nursing home/home health care settings had lower pre-test scores and smaller knowledge gains in each of the six modules than those in hospital/educational settings. Mean increases ranged from 6.4 points (an 8.7% increase) in module 1-14.6 points (a 26.2% increase) in Module 6 (P < 0.01). IMPLICATIONS FOR NURSING MANAGEMENT: The HEALE curriculum sets a standard for best practices in nursing management and for LGBT cultural competency in geriatric education. As such, implementation of this cultural competency training will go a long way to establish fundamental concepts regarding LGBT elder care and provide long-term strategies for providing culturally sensitive patient care.

Toileting Behaviors and Lower Urinary Tract Symptoms: A Cross-sectional Study of Diverse Women in the United States.

Background: Toileting behaviors are increasingly recognized as factors potentially contributing to development of lower urinary tract symptoms (LUTS). Objectives: To examine adult women's toileting behaviors and LUTS across age and race/ethnicity groups and relationships between toileting behaviors and LUTS. Design: Planned secondary analysis of questionnaire data collected in a focus group study on bladder health. Settings: Questionnaires were completed at the conclusion of focus groups conducted in community settings affiliated with seven research centers across the United States. Participants: Community-living women regardless of LUTS status. Methods: Forty-four focus groups were conducted with 360 adolescent and adult cisgender women. After each focus group, participants completed questionnaires to assess toileting behaviors (Toileting Behaviors-Women's Elimination Behaviors Scale (TB-WEB)) and their experience of LUTS (Lower Urinary Tract Symptom Tool), This analysis includes quantitative data from the subgroup of 316 participants who completed the questionnaires. Results: Participants ranged in age from 18-93 years (Mean=50.2 years). A significant effect for age was found for delayed voiding behavior, reported by 76.5% of women ages 18-25 years and 21.9% of those 75+ years (p<0.001). Conversely, reports of premature voiding were lowest in the youngest and higher in the oldest three age groups (p=0.022). Racial/ethnic differences were found for three domains of toileting behavior. Black and Hispanic women expressed a stronger preference for voiding at home rather than away from home (98.9%, 93.5%, respectively) compared to White women (90.4%, p=0.041), were more likely to void prematurely (37.6%, 33.3% vs. 21.2%, p=0.048) and to crouch, squat, or stand rather than sit to void when away from home (69.9%, 58.3% vs. 41.3%, p<0.001). Four toileting behavior domains were significantly associated with LUTS. Premature voiding was associated with any bothersome LUTS (OR=2.5; 95% confidence interval [CI]=1.3-4.8) and any bothersome storage LUTS (OR=2.9; CI=1.5-5.5). Delayed voiding was associated with bothersome emptying symptoms (OR=2.8; CI=1.1-6.6). Straining to void was associated with bothersome storage symptoms (OR=2.0; CI=1.0-3.7), bothersome emptying symptoms (OR=3.7; CI=1.9-7.3), and any bothersome LUTS (OR=2.3; CI=1.2-4.3). Preference for non-sitting positions to void when away from home was associated with bothersome emptying symptoms (OR=2.5; CI=1.3-4.8) and any bothersome LUTS (OR=1.8; CI=1.0-3.2). Conclusions: These findings highlight the need for research to understand underpinnings of age and racial/ethnic differences in toileting behaviors and identify mechanisms by which toileting behaviors might influence development of LUTS over time. Understanding causal pathways is important in the development of public health interventions to encourage toileting behaviors that support bladder health.

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Bladder Health Experiences, Perceptions and Knowledge of Sexual and Gender Minorities.

While recent efforts have been made to understand the bladder health experiences, perceptions, and knowledge of cisgender adolescent females and women, virtually nothing is known about the bladder health experiences of people who identify as sexual and gender minorities (SGMs). A community-based participatory research approach using a focus group methodology to engage 36 adult participants who identify as SGM, including individuals who identify as gender non-conforming, queer, transgender (trans) men, or lesbian, in one of six focus group discussions on bladder health. Using directed content qualitative data analysis from the six unique focus groups, three interrelated themes were revealed: gender socialization of voiding behavior and toilet environment culture producing identity threats, and risks to gender affirmation; consequences of hetero-cis normative bathroom infrastructure necessitating adaptive voiding behaviors; and, physical and psychosocial consequences of chronic anxiety and fear are associated with voiding experiences. Insight on how SGMs navigate voiding behaviors, toilet experiences, and health care seeking is needed to assure that bladder health promotion activities are inclusive of this population's needs.

U.S. Adolescent and Adult Women's Experiences Accessing and Using Toilets in Schools, Workplaces, and Public Spaces: A Multi-Site Focus Group Study to Inform Future Research in Bladder Health.

The World Health Organization recognizes access to clean and safe toilets as crucial for public health. This study explored U.S. adolescent and adult cisgender women's lived experiences accessing toilets in schools, workplaces, and public spaces. As part of the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium, we conducted 44 focus groups with female participants (n = 360; ages 11-93). Focus groups were stratified by age (11-14, 15-17, 18-25, 26-44, 45-64, 65+) and conducted across 7 geographically diverse U.S. sites from July 2017-April 2018. Using a transdisciplinary approach, we conducted conventional qualitative coding informed by our PLUS conceptual framework and used content analysis processes to identify salient themes. Across settings, toilet access was restricted by "gatekeepers" (i.e., individuals who control access to toilets). In contrast, self-restricting toilet use (deciding not to use the toilet despite biologic need to urinate) was based on internalized norms to prioritize school and job responsibilities over urination. In public spaces, self-restricting use was largely in response to lack of cleanliness. Across the life course, participants perceived gender disparities in the ability to easily access public toilets. Further research is needed to determine if and how these factors impact bladder health across the life course.

A Novel Research Definition of Bladder Health in Women and Girls: Implications for Research and Public Health Promotion.

BACKGROUND: Bladder health in women and girls is poorly understood, in part, due to absence of a definition for clinical or research purposes. This article describes the process used by a National Institutes of Health funded transdisciplinary research team (The Prevention of Lower Urinary Tract Symptoms [PLUS] Consortium) to develop a definition of bladder health. METHODS: The PLUS Consortium identified currently accepted lower urinary tract symptoms (LUTS) and outlined elements of storage and emptying functions of the bladder. Consistent with the World Health Organization's definition of health, PLUS concluded that absence of LUTS was insufficient and emphasizes the bladder's ability to adapt to short-term physical, psychosocial, and environmental challenges for the final definition. Definitions for subjective experiences and objective measures of bladder dysfunction and health were drafted. An additional bioregulatory function to protect against infection, neoplasia, chemical, or biologic threats was proposed. RESULTS: PLUS proposes that bladder health be defined as: "A complete state of physical, mental, and social well-being related to bladder function and not merely the absence of LUTS. Healthy bladder function permits daily activities, adapts to short-term physical or environmental stressors, and allows optimal well-being (e.g., travel, exercise, social, occupational, or other activities)." Definitions for each element of bladder function are reported with suggested subjective and objective measures. CONCLUSIONS: PLUS used a comprehensive transdisciplinary process to develop a bladder health definition. This will inform instrument development for evaluation of bladder health promotion and prevention of LUTS in research and public health initiatives.