Lower urinary tract symptoms affect between 20-40% of young adult to middle age women with symptoms increasing with age. Limited evidence is available to address bladder health promotion and prevention of dysfunction. This study of the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium uses a life course perspective to engage adolescent and adult women in describing their lived experience of bladder health.

Objective/Purpose

This study explores adolescent and adult women’s experiences, perceptions, beliefs, knowledge, and behaviors related to bladder health across the life course from a socioecological perspective.

Methods

This focus group study was performed across seven research centers using a semi-structured focus group guide informed by a conceptual framework based on the socio-ecological model.

Beginning July 2017 through April 2018, participants, ranging from 11 to over 65 years were recruited to achieve age, racial/ethnic, and regional diversity. The target for participation was to conduct 42 focus group sessions with 6-8 participants per group. Six to ten focus groups were to be in Spanish. Quantitative measures were completed to characterize the study population. Transcripts from the focus groups were reviewed and content analysis performed to identify themes and new knowledge. Two of four primary themes are presented separately.

Results

Multiple, site-specific recruitment strategies led to 44 focus groups being conducted with 360 cisgender adolescents and adult women. The socio-demographics of participants included racial/ethnic, socioeconomic and regional diversity. This foundational study is contributing evidence to further inform research and practice focused on bladder health promotion in adolescent and adult women.

The Study of Habits, Attitudes, Realities, and Experiences (SHARE), a qualitative study of the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium, employed a socio-ecological, life-course model to explore women’s and adolescents’ experiences, perceptions, beliefs, knowledge, and behaviors related to bladder health and function.

Objectives/Purpose

To describe how women and adolescents use a process of normalizing LUTS to try to sustain a valued sense of self.

Methods

Forty-four focus groups were conducted with 360 women and adolescents by age categories (11-14, 15-17, 18-25, 26-44, 45-64, 65+) at seven PLUS study sites across the U.S. Sessions and fieldnotes were audio-recorded and transcribed. Multi-level content analyses identified and classified emergent themes.

Results

The process of normalizing LUTS to sustain a valued sense of self emerged on 3 levels: 1) cognitive - making sense of symptoms; 2) interpersonal - talking about symptoms 3) organizational/institutional: being influenced by public messaging about symptoms. Unintended consequences of normalizing LUTS include altering daily routines to accommodate symptoms and delaying healthcare seeking.

Discussion/Conclusions

Across the life course, normalizing LUTS is a multidimensional process embedded in the social ecology of women’s lives. Viewed contextually, normalizing management strategies, while this may help to sustain a valued sense of self, can have a deleterious impact on quality of life and health. Future research should explore ways to address the impact of social processes on bladder health and to educate women and adolescents about the importance of seeking health care for LUTS.

Little is known about bladder behaviors (voiding, toileting position, fluid intake), which may have novel risk and protective factors impacting bladder health.

Objectives/Purpose

The Study of Habits, Attitudes, Realities and Experiences, the foundational qualitative study of the NIH/NIDDK’s Prevention of Lower Urinary Tract Symptoms Research Consortium, uses a socio-ecological conceptual framework to explore women and adolescent females’ experiences with bladder health across the life course.

Methods

We conducted 44 focus groups (FG) with 360 female participants by life course age groups across seven US research centers. A transdisciplinary interpretive lens was used to analyze FG verbatim transcripts and fieldnotes through multi-staged directed content analysis with community validation enhancing contextual understanding.

Results

Analysis and interpretation revealed an underlying social process of “Monitoring Bladder Behavior” in three distinct types: (1) monitoring others to determine norms and expectations; (2) being monitored by others who gate-keep and guide; and (3) monitoring oneself to assess relative behavior. Participants engaged in comparative analysis of others to determine normality, set personal expectations, and gauge the voiding climate for permission and opportunities to void. Others were described as judging behaviors, providing guidance, or gatekeeping to control access and/or confer legitimacy to the need to void. Self-monitoring involved evaluating urine quality (color, smell, stream), urge threshold, and subjective compliance with perceived norms.

Discussion/Conclusions

These qualitative findings suggest that underlying processes of voiding behaviors are highly social. Given the social embeddedness of bladder monitoring behaviors, prevention science efforts could leverage social networks for social norming intervention and engage gatekeepers for policy changes.

While recent efforts have been made to understand the bladder health experiences, perceptions, knowledge and attitudes of cis-gender adolescents females and adults, virtually nothing is known about the bladder health experiences of people who identify as sexual gender minorities (SGMs).

Objective/Purpose

A community-based participatory research (CBPR) approach was used to engage 36 SGM adult participants identifying as sexual or gender minority individuals (i.e., trans men, gender nonconforming (GNC), lesbian, bisexual, or queer) in a community-based focus group study.

Methods

Six 90-minute focus group discussions were conducted focused on bladder health experiences. This included two focus groups with participants who identify as trans male, one with GNC individuals, one lesbian focus group, one with individuals who identify as bisexual, and one with individuals who identify as queer.

Results

Using directed content qualitative data analysis, we uncovered three interrelated themes: (1) gender socialization of voiding behavior and toilet environment culture produces identity threats and risks to gender affirmation; (2) the consequences of hetero-cis normative bathroom infrastructure necessitating adaptive voiding behaviors, and (3) physical and psychosocial consequences of chronic anxiety and fear are associated with voiding experiences. Insight on how sexual gender minorities 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.