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.

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 womens 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.

INTRODUCTION: Community engagement is increasingly recognized as a critical component of research, but few studies provide details on how to successfully incorporate community perspectives in urological research. This manuscript describes the community engagement strategy used by the Prevention of Lower Urinary Tract Symptoms Research Consortium (PLUS) to design RISE FOR HEALTH (RISE), a multicenter, population-based, prospective cohort study to promote bladder health. METHODS AND RESULTS: The PLUS Community Engagement Subcommittee, guided by a set of antiracist community engagement principles and practices, organized, implemented, and communicated findings for all RISE community engagement activities. Community engagement was conducted through a diverse network of community partners at PLUS clinical research centers called Rapid Assessment Partners (RAPs). Via online surveys (4), virtual discussion groups (14), and one-on-one interviews (12), RAPs provided input on RISE processes and materials, including in-person visit procedures, specimen collection instructions, survey data collection instruments, recruitment materials, the study website, and the study name. This process resulted in significant changes to these aspects of the study design with reciprocal benefits for the community partners. DISCUSSION: Meaningful community engagement improved the design and implementation of RISE. PLUS will continue to engage community partners to interpret the RISE study results, disseminate RISE findings, and inform other PLUS studies toward the development of interventions to promote bladder health. Future urological studies would also benefit from community participation in determining priority research questions to address.

Community engagement has been named a research priority by the National Institutes of Health, and scholars are calling for community engagement as an approach to address racism and equity in science. Robust community-engaged research can improve research quality, increase inclusion of traditionally marginalized populations, broaden the impact of findings on real-life situations, and is particularly valuable for underexplored research topics. The goal of this paper is to describe lessons learned and best practices that emerged from community engagement in a multi-institution population health research consortium. We describe how a foundation was laid to enable community-engaged research activities in the consortium, using a staged and stepped process to build and embed multi-level community-engaged research approaches.. We staged our development to facilitate (a) awareness of community engagement among consortium members, (b) the building of solidarity and alliances, and (c) the initiation of long-term engagement to allow for meaningful research translation. Our stepped process involved strategic planning; building momentum; institutionalizing engagement into the consortium infrastructure; and developing, implementing, and evaluating a plan. We moved from informal, one-time community interactions to systematic, formalized, capacity-building reciprocal engagement. We share our speed bumps and troubleshooting that inform our recommendations for other large research consortia-including investing the time it takes to build up community engagement capacity, acknowledging and drawing on strengths of the communities of interest, assuring a strong infrastructure of accountability for community engagement, and grounding the work in anti-racist principles.

Objective: The purpose of this analysis was to explore adolescent and adult womens preferences for the content and delivery of public health messaging around bladder health. Materials and Methods: This was a directed content analysis of focus group data from the Study of Habits, Attitudes, Realities, and Experiences, which explored adolescent and adult womens experiences, perceptions, beliefs, knowledge, and behaviors related to bladder health and function across the life course. This article reports an analysis of the Public Health Messaging code, which includes participants views on what information is needed about bladder health, attributes of messaging, and preferred locations and delivery methods. Results: Forty-four focus groups were conducted with 360 participants (ages 11-93 years) organized into six age groups. Across age groups, participants wanted messaging on maintaining bladder health and preventing bladder problems. They offered suggestions for a wide variety of methods to deliver bladder health information. Ideas for delivery methods fell into three broad categories: (1) traditional in-person modes of delivery, which included individual communication with providers in clinical settings and group-based methods in schools and other community settings where adolescent and adult women naturally gather; (2) internet-based website and social media delivery methods; and (3) static (noninteractive) modes of delivery such as pamphlets. Participants recommended the development of multiple delivery methods to be tailored for specific audiences. Conclusions: These findings can inform development of broad ranging public health messaging tailored to audiences of all ages with a goal of engaging adolescent and adult women across the bladder health risk spectrum.

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. 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. 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. This foundational qualitative study seeks to develop an evidence base to inform future research on bladder health promotion in adolescent and adult women. 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 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.

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.

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.

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.