Black Women’s Perspectives on Bladder Health: Social-Ecological and Life Course Contexts

Abstract

Aims:

This paper explores Black women’s perspectives on bladder health using a social-ecological conceptual framework and life course perspective.

Methods:

We conducted a directed content analysis of data from the Study of Habits, Attitudes, Realities, and Experiences (SHARE), a focus group study by the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium. Analysis was conducted on data from five focus groups and a member checking session where all participants self-identified as Black or African American.

Results:

Forty-two participants aged 11–14 or 45+ years reported life course experiences with their bladder. The intersection of race and gender was the lens through which participants viewed bladder health. Participants’ accounts of their perspectives on bladder health explicitly and implicitly revealed structural racism as an explanatory overarching theme. Participants described (a) historically-rooted and still pervasive practices of discrimination and segregation, engendering inequitable access to quality medical care and public facilities, (b) institutional barriers to toileting autonomy in educational and occupational settings, promoting unhealthy voiding habits, (c) internalized expectations of Black women’s stereotyped role as family caregiver, compromising caregiver health, (d) lack of reliable information on bladder health, leading to unhealthy bladder behaviors, and (e) potentially stress-related comorbid chronic conditions and associated medication use, causing or exacerbating bladder problems.

Conclusions:

Bladder health promotion interventions should address social-ecological and life course factors shaping Black women’s bladder health, including social and structural barriers to accessing equitable health information and medical care.

Introduction

Across the life course, Black women experience a cumulative burden of chronic comorbid conditions potentially impacting bladder function. Black women have identified heart disease, diabetes, cerebrovascular disease, and obesity as serious health concerns.¹ Compared to women of other races or ethnicities, Black women have higher complication rates from these conditions and carry an excess burden of cardiovascular mortality.^2–4 Yet, Black women are underrepresented in health disparities research. As a result, prevention or treatment protocols may not align with their unique needs.⁵ Understanding Black women’s perspectives on bladder health during various stages of life could inform approaches for bladder health promotion and prevention of lower urinary tract symptoms (LUTS) for this population.

In health research based on racial identity, methodological approaches typically position the White perspective as normative, eclipsing aspects of Black women’s experiences not within the White paradigm. The centrality of race in Black women’s lives and its intersection with gender is a critical lens for interpreting and contextualizing a range of experiences, including health-promoting and health-compromising exposures.⁶

The literature demonstrates how societal, institutional and interpersonal systems and processes, including structural racism, negatively influence social determinants of health. Structural racism refers to societal mechanisms fostering racial inequities through self-perpetuating discriminatory systems⁷ negatively impacting social determinants of health by reinforcing unequitable conditions of people’s daily lives.⁸ Discriminatory systems impact health through individual sociodemographic and interpersonal factors, proximal community environments, and distal institutionalized policies and practices that produce inequity in distribution of resources needed for maintaining health, seeking treatment, and managing illness.⁹

Research suggests Black women link their community’s experience of poorer health to structural and interpersonal forms of racism.¹⁰ For example, research on Black adults’ perceptions of the etiology of type 2 diabetes demonstrated the salience of sociocultural and historical contexts of illness representations, with participants describing a legacy of legally sanctioned racial discrimination.¹¹ Descriptive data also revealed Black women’s beliefs about the effect of systemic racism on their ability to self-manage diabetes.¹² Among Black women in a large longitudinal cohort study, greater perceived stress of both gender and race discrimination were associated with more burdensome LUTS and impact.¹³ Researchers also have identified associations between low socioeconomic status and LUTS, including urge urinary incontinence, overactive bladder symptom severity, and undiagnosed urinary incontinence^14–16

The purpose of the current analysis was to understand social-ecological contexts shaping Black women’s bladder health perspectives and experiences. While previous research with Black women has utilized a social-ecological frameworks to characterize perspectives on a variety of health conditions, applying this framework to bladder health is novel. This work considers how societal and institutional systems and processes, including structural racism, function as social determinants of bladder health among Black women.

Materials and Methods

Overview

The current work is a secondary analysis using data from the “Study of Habits, Attitudes, Realities, and Experiences” (SHARE). SHARE was conducted by the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium, a transdisciplinary network for expanding research on prevention of LUTS and promotion of bladder health in adolescent and adult women.¹⁷ Using focus group methodology, the aim of SHARE was to explore participants’ experiences, perceptions, beliefs, knowledge, and behaviors about bladder health and function across the life course. The full protocol for the parent study is published elsewhere.¹⁸ This paper reports a directed content analysis of transcripts from 5 focus groups and a follow-up member checking session composed exclusively of Black participants.

Participants

A racially, ethnically, geographically, and socioeconomically diverse sample of 360 adolescent and adult women were recruited from seven research centers across the United States (U.S.). Demographic data on the full sample are published elsewhere.¹⁹ Applying a cross-sectional life course perspective, participants were organized into six age groups: 11–14 years; 15–17 years; 18–25 years; 26–44 years; 45–64 years; and 65+ years. Participants were included without regard to LUTS status. The study was approved by the University of Pennsylvania Institutional Review Board (IRB), the central review board for six of the seven centers, and a local university IRB at the remaining site. All participants provided written informed consent.

Of the 360 SHARE study participants, 114 (31.7%) identified as Black. While some focus groups included both Black and White women, five focus groups were composed exclusively of adolescent or mid-life and older women (45+ years), self-identifying as Black or African American and residing in northeastern, southern and midwestern U.S. regions. Data for the current analysis was drawn from transcripts of these five focus groups (n=42), a member checking session with Black adult participants who were recontacted and invited to participate, and corresponding field notes and debriefing discussions.

One focus group was conducted with young adolescents (ages 11–14 years; n=6); another with middle-aged women (45–64 years; n=11); and three with older women (65+ years; n=6, n=10, n=9). The member checking session included a subset of women from the two older groups, ages 45–64 and 65+ years (n=15).

Procedures

Forty-four age-concordant focus groups were conducted between July 2017 and April 2018. Focus groups were facilitated by moderators with standardized instruction in the study protocol, qualitative research principles and a trauma-informed protocol for addressing participant distress. Sessions were audio-recorded and transcribed verbatim. A designated team member documented focus group observations in a fieldnote template used for team debriefings after each session. Sessions followed a semi-structured guide informed by the PLUS Social-ecological Conceptual Framework, which comprised societal-community, institutional, interpersonal, individual, and biological systems to explore potential influences on bladder health.²⁰ A follow-up member checking session elicited feedback on emerging findings from Black focus-group participants.

Data Analysis and Interpretation

Data analysis and interpretation characterized life course and social-ecological factors shaping Black women’s lived experiences of bladder health. Preliminary in-depth review of data revealed robust accounts of Black women’s experiences of bladder health consistent with social-ecological perspectives. Subsequently, the lead author identified domains and defined subcodes at each level of the PLUS Social-ecological Framework,²⁰ which was operationalized as a priori coding categories: (1) Biological systems: clinical issues such as bladder function/dysfunction and comorbidity; (2) Individual systems: bladder health beliefs and behaviors; (3) Interpersonal systems: family, friendships, and other close relationships; (4) Institutional systems: occupational and educational organizations; (5) Societal-community systems: historical and societal factors broadly influencing health among populations and communities. Working independently, the first and last authors assigned sections of text to social-ecological categories. Coding decisions were reviewed and reconciled. The final body of excerpts were interpreted by an interactive transdisciplinary team of racially and ethnically diverse investigators from social-behavioral science, psychology, anthropology, social work, nursing, pediatrics, adolescent medicine, urogynecology, gerontology, public and community health, clinical research, and biostatistics disciplines. Two Black members of the PLUS Consortium Community Partnership Council, which advises PLUS on its research, reviewed a complete manuscript draft and offered recommendations for interpretating and presenting findings.

Results

Structural racism and its impact on bladder health emerged explicitly and implicitly as an overarching explanatory theme. Participants described present-day bladder health concerns (current self), provided retrospective accounts of earlier experiences and changes in bladder health over time (past self), and offered speculative views of anticipated bladder health developments (future self). Results are presented in a top-down ordering of the social-ecological framework, indicating that policies and practices embedded in societal and institutional systems can trickle down, impacting interpersonal, individual, and biological systems. Exemplary quotations corresponding to each system are provided (Tables 1–5).

Table 1:

Societal-Community Systems: Medical Care and Public Facilities

Centrality of Race in Health Care Perspectives

See we sit and we always say race don’t play no part in it [health] but it does. It plays a part… a lot of things is different, and we try to say that we are the same, which we are. We can make the same money. We can make the same sum it up, but when it come down to our roots, we’re totally different. (age 45–64).

White people, they don’t look at situations like Black people do… Just a lot of our opinions is just different you know what I’m saying? And it is not, you know it could be money that a class that we came up in. It’s just a lot of different factors whereas we look at stuff a little bit different than each other do. (age 45–64).

Caucasians got open communication. It’s open. We didn’t know about birth control but as I got older, I learned people have been taking birth control since they was like 13 or 14. I was like where were they? I didn’t know about it. And my OB/GYN… he say I’m going to tell you something, if you was a Caucasian woman, you would have had a hysterectomy. (age 45–64)

Medical Care

In our generation as we came up, our healthcare was like old sayings or hand me down information. You know we could not just go to the doctor and as Caucasians, they went to the doctor, they had doctors, you know they uncle was a doctor you know we weren’t privy to that. And even if you did go to a doctor, he’s not telling me the same thing he will tell you… If we got a doctor, he was our doctor and he gave us medicine based on his background, which a lot of our stuff coming up was you know like old sayings or you know whatever… They (parents) wouldn’t let me go downtown to a doctor. If I went, (it was) in somebody’s house in the back, you know, so it is a difference in healthcare. (age 45–64)

My mother was born and raised on the farm and we weren’t raised on the farm ourselves, but she was, and I’m sure much of what she taught us was based on what she learned from her mother on the farm, and she just passed it down, exactly. She would tell us you know we, we feel like we’re having some, well for example, if your, if your stomach hurts or if you, you sick on your stomach, well you know she’ll, she’ll give you some cod liver oil or something, cause your system need to be cleaned out [group in agreement], you know, or with the bladder, with stomach problems again, she’ll say, “Well you’ve been drinking your water. You’ve been drinking enough water? There was six of us and she wouldn’t necessarily take us you know to a physician herself because she used a lot of what she had learned to bring us back to a normal level of health before she called a doctor. (age 65+)

My grandmother, she took me to the midwife. And what she did was she took one of those White cloths that could go around your waist. And what she did was she had me to lie down and she took both her hands and came up like this several times and around. She said now keep this, you can have it loose on at the top, but at the very bottom, have it as tight as you possibly can… So what I had to do those same procedures that she did, because that, at that particular time, we weren’t able to go to, didn’t have finance enough to go to the doctor. (age 65+)

Growing up, we did not go to a doctor until we were, it was either an emergency. You got cut, you were bleeding or we didn’t go to a doctor probably till out of high school, you know. No need. I mean, they fix it. Grandmama had a cure, you know, or it was no need to go to a doctor. I think I remember going to the dentist as a child because my teeth would come up but they wouldn’t come out. That’s, that’s all the medical care I had, you know. (age 45–64)

Pattern of Blended Approaches to Healthcare

I have a sister who would probably try more natural or herbal type remedies to fix her health issue before she would contact the doctor… She’s over 60 years old now, so, she’s always done it that way, and then if she can’t, she would also discuss it with older women and get input from them. She liked what older women would say about using home remedies for issues I think that happen to them, to their bodies. (age 65+)

Every time I laugh or every time I sneeze but it’s scary but so I have been talking to the doctor about it you know so we, I’m not one for a whole lot of surgeries and cutting on me and stuff like that and so I’m talking to my elders about it but I’m so, I’m going to get a second opinion you know make sure I’m going if this is what we see, if this was happening and this what we need to do, I want to make sure that I’m following the right path. (age 65+)

Moderator: So if you have a question, people your age have a question about their bladder or any concern, who do they turn to first? Participant: I would say it’s my doctor. My elders, you know. Ladies this close to me in my circles, you know, that might have went through some changes and things, and but first I’d say my elders and then I would say my doctor. (age 65+)

Moderator: How about if you or someone else your age had a question or a problem with your bladder or a question about bladder health, who would you go to? Participant: I would go to my doctor. Well, first I would go to my mom and then she would take me to my doctor ‘cause my doctor would know more. (age 11–14)

Toileting and Hydration Facilities

I just figured I was wetting the bed because we, I grew up in the south and it would be dark. We had outdoor toilet, and I was always scared of the night to go have to go out to the outdoors toilet, and it just dawned on me all these years, that’s why I wet the bed because I was scared to go to the toilet. It was outdoors, and it would be dark. (Several speaking at once, but in agreement, suggesting they had similar experiences.) (age 65+)

They had the outhouse, they had these things they called slop jars, like if you were in the house at night, to keep from going out to the outhouse, you used the slop jar… I didn’t like using this slop jar. Sometimes I would just hold it, because I didn’t want to get on it. (age 65+)

If you visit some of my cousins, they didn’t have a slop jars. They would go out and they had little holes in the ground. They didn’t have no outhouse. They would have little holes in the ground. They have Sears catalog paper. That’s what you wiped yourself with. So when I would go there, I would do nothing. (age 65+)

I remember when department stores downtown did not have bathrooms for colored. These were the large, nice department stores that White people shopped in and were in the nicer part of downtown. If you wanted to shop in a store with a bathroom for colored, you had to go farther downtown, and into the Black part of town where White people wouldn’t go. (age 45–65+)

Growing up we could only drink out of the colored water fountain. (age 45–65+)

The colored fountains were not the new fountains, we got the hand me downs and the White people got the new fountains, so half the time ours didn’t work right anyway. (age 45–65+)

Table 5:

Biological Systems: Comorbidities and Medications

Bladder Health Issues

I know me personally when I go to the bathroom, I’ll go and like two minutes later, I have to go again because I didn’t go all the way the first time. (age 11–14)

It’s just not as easy to empty your bladder as you get older because when you go to the restroom, you’ll urinate and then you’ll sit there a few minutes, so then you’ll urinate a little more and sit there a few minutes, then a little bit more. It doesn’t just all come out at one time. (age 65+)

As long as I’m sitting down, I can hold it. But if I stand up, then I got to go… it’s very uncomfortable when you have to run to the bathroom, rush to the bathroom. Just rush all the time. (age 65+)

I try to go no matter where I am. If you say I went just 15 minutes ago, well tough, I’m going again. And that’s because I have to go. (Age 45–64)

I have the urgency to get up. I never get a good night’s rest because I know I’m up four to five times a night going to the bathroom if it’s nothing but a drop or two, I have to go. (age 65+)

Sometimes when I’m sleeping, like when I used to sleep, I never felt the pee come out. So I just peed on myself, I never felt it. (age 11–14)

Comorbid Conditions Impacting the Bladder

You know being a hypertension person… That will make it go more than you usually go. Because I think your body pick up a lot of fluid, due to that health problem you have. And that’s make you wanna go more frequent. (age 65+)

I don’t know how many peoples are in here are a diabetic. I know that have a lot of do with your bladder… And when my sugar is up, my sugar tell me I need to go to the bathroom, I need to go to the bathroom right then and there… once the sugar is up, that urine is not going to stay in you. Your bladder is not going to work right, point blank. (age 65+)

I think there are, like, certain diseases that can affect your bladder and stuff like that. I know, ‘cause I have asthma, when I get coughing, I’m really having to go to the bathroom. (age 11–14)

Stress and anxiety can affect whether you have to go to the bathroom a lot frequently or not. I know it does in my situation many times I have to go. (age 45–64)

Medications Affecting Bladder Function

The diabetic pill … is so good for your diabetes but the side effect is thirst… so I’m just constantly going. It has really interrupt my outside life. (age 45–64)

Sometimes we’re on a lot of medications. I’m personally, I’m on a lot of medication that makes you have to go. (age 65+)

I was put on Lasix fluid pill. And they will make you go to the bathroom. When it says go, you better go. (age 65+)

I’m on diuretics, so when I go to church or go anywhere, I don’t take the diuretic that day. I mean, till I get back home. (age 45–64)

For me that if I got somewhere to go seriously like in my car, I won’t take my pressure pill that morning… there’s nowhere to go to go to the bathroom, and I won’t lie. I will not take it but I’ll take it when I get back home… I won’t risk it because I know that water pill, I got to go. (age 45–64)

Societal-Community Systems

On the Societal-Community Level, findings focused on the centrality of race to participants’ perspectives on health, representing an overarching influence shaping the social ecology of participants’ lives, and directly or indirectly influencing conditions on other social-ecological levels. (Table 1) Black participants discussed how health perspectives of Black and White people are rooted in different sociohistorical experiences. Black adult women’s perspectives on bladder health were shaped in a society where racial discrimination and segregation were embedded in social structures restricting engagement with societal- and community-level institutions, including healthcare systems, as manifested in limited access to formal healthcare resources. Mid-life and older participants described lacking reliable health information and quality medical care available to White women, relying instead on home remedies handed down through generations. While most participants reported currently seeking healthcare from licensed clinicians, remnants from earlier years remained with reliance on a blend of lay and professional resources. Adolescents described a similar pattern of health information seeking, first going to their mothers as conduits to formal healthcare services.

Structural racism permeated community spaces, fostering a dual system of public facilities. Older participants described childhood experiences of racism and segregation impacting bladder health due to legalized practices designating inferior and less accessible public restroom facilities and water fountains for “colored” people. The impact of structural racism extended to private spaces, potentially compromising development of healthy bladder habits. During formative years in the rural South, for some participants, lack of indoor plumbing cultivated toileting habits such as holding urine that may have caused bedwetting. Fear of using outhouses in the dark and dislike of containers for urine and excrement (slop jars) were disincentives to voiding at night.

Institutional Systems

On the Institutional Level, accounts of restricted voiding practices in schools and workplaces resonated with historic and contemporary institutionalized practices regulating Black women’s bodies.²¹ Adolescents discussed how school schedules and rules imposed unnatural voiding routines. They saw bathroom access as subject to teachers’ discretion. In some cases, students advocated for one another’s toileting needs; in other situations, students pushed back, exercising personal agency, and challenging notions that teachers have authority over students’ bodily functions. A system of bathroom escorts and monitors added another layer of psychological stress to the “bathroom situation,” particularly when monitors were men.

In occupational settings, voiding behaviors seemed grounded in implicit biases about not prioritizing bladder needs in the workplace. Participants described work environments in hospitals, classrooms, food service lines, and piecework garment shops where leaving their stations unattended was not allowed. Voiding constraints often were self-imposed to avoid loss of productivity and income in service sector employment. Participants held urine as a strategy for managing workloads and performing duties. (Table 2)

Table 2:

Institutional Systems: Schools and Workplaces

Educational Sector

Restrictive Voiding Environments

At my school, like the situations, they have like this whole bathroom situation at school, like they have certain time periods for a certain class when you go to the bathroom and we only have two, so I think that sort of affects the routine of the bladder. (age 11–14)

We can’t go to the bathroom unless it’s after 9:30, and it’s only one person out of the class at a time. And, like, our bathroom is right near the office, so, if they look out the office, they’ll see a lot of people going in, some people have to go back to the classroom. (age 11–14)

I go to high school, and we can’t go to the bathroom the first 10 minutes and I’ll try to ask, but we have like a line and there’s students in every, in each period, who go to the bathroom and take a very long time. So I don’t have enough time to ask because the first 10 minutes, we don’t get to go and the last 10 minutes we don’t get to go, so I don’t go until the end of the day. So I hold it all day. (age 11–14)

Stress Imposed by Bathroom Gatekeepers

My teacher, she is so strict. She like to be mad. I don’t like to be mad. She made me stay in the classroom… I have to use the bathroom. She say no, sit in the seat… So, I was like around, “well when you have to go, you could go, when I have to go, I can’t go?” (age 11–14)

I think that like when students that have bladder problems, they ask to go to the bathroom, there are other students who say this person has a problem in using the bathroom and then the teacher, they don’t let them. They still don’t. They’ll be like no, you’re joking around. (age 11–14)

Some people do cry when they really have to use the bathroom, and I think that’s affected because it affects your emotions. Some people don’t cry when they have to use the bathroom because they know how to hold it when they really have to go. But, yeah, some people do cry… because you really had to go bathroom and you just gotta cry because it hurts. (age 11–14)

Stress Imposed by Bathroom Monitors

And it will be like a bathroom monitor standing out there, which is my Spanish teacher, and we’ll have to wait in the line if like too many people come in at once, or she’ll send some people back. (age 11–14)

There’s cameras outside the bathroom and it’s inside the bathroom, not inside the stalls but it’s like right near the mirrors and the driers… they know who’s really going to the bathroom and who’s not, so. (age 11–14)

There are some teachers who escort you to the bathroom, but I feel like it should be like your gender teacher, like if you’re a girl, like a girl should go in the bathroom, because in this situation, the guy he’s like the assistant, he, sorta, like went into the girls’ bathroom while some girl was using the bathroom, and I felt like that was just nasty and gross. (age 11–14)

Occupational Sector

I know when I was working I never had time to go to the washroom… sometimes I would work and I would go all day… And then you, you realize later on you waited too long. It’s like your bladder is really, really full…You’re not supposed to go all day with your bladder being full. (age 65+)

When I was working, you know, I’m a seamstress. And we have like two breaks and I try to go to the bathroom on them breaks because you working and you trying to make money because you working on piece rate. So you going to try to sit in your chair and work as long as you can instead of just run to the bathroom and stuff. I think that had a lot to do with me, too, because I used to hold mine. (age 45–64)

I’m one that do work in the school system and there are times when you cannot go. You cannot leave the children unsupervised so you have to be in the classroom so you have to hold it till someone relieve you and sometimes that could be all the way up until lunchtime. (age 65+)

When I was working, I was in the kitchen and rush hour you couldn’t leave that line until the rush hour was over, so I had to stand here and dance and prance until it was my time, I could leave you know, so that have a lot to do with it, holding it. (age 65+)

I have held my urine in younger years, I worked in surgery, recovery, and intensive care, so you couldn’t leave… when I think back, I’ve held it seven and eight hours and the muscles were good and strong then. Just kind of tighten up and you wouldn’t have to go. But now I couldn’t do that. (age 65+)

Interpersonal Systems

On the Interpersonal Level, findings suggested institutionally embedded expectations about family caregiving²² can shape health behaviors among Black women. Adult participants described how bladder health is family-focused and embedded in multigenerational familial norms for provision of informal, often long-term, support to relatives with declining health, functional disabilities, or cognitive decline. By assuming informal caregiving roles for family members, participants often neglected their own health. Retrospective and contemporary accounts characterized Black women as health keepers of the family with responsibility for taking care of family members with illness or disabilities impacting bladder function. This included monitoring voiding needs, assisting with toileting and changing absorbent products and bedding. (Table 3)

Table 3:

Interpersonal Systems: Caregiving

Caregiving for Family Members’ Bladder Needs

My husband before he died, he had a catheter… he had kidney problems all the time and he was bedridden. He couldn’t do anything for himself. (age 65+)

I took care of my mom but after she got to a certain stage, we have to put the Depends on her because… as time was going on, we would take her to the bathroom and she wouldn’t use it and sometimes you put her back in the bed, she would use it then. (Group in agreement.) So that’s the experience I had. We had to do the plastic sheets. I didn’t realize that an older person have so much urine in their body when they urinate because it will be the whole bed, so we had to like cover the whole bed, and I never thought it was that much urine. (age 65+)

If you be around Alzheimer’s people a lot, you have to monitor them their bladder because before they go somewhere, it just like a kid. You know you take, when you a kid, you are, you gotta use the bathroom before you leave, and when you, you know going to the restroom, you got to use the bathroom right there. Then when you coming back home, you got to use the bathroom… just be patient, make sure because they can’t tell you, ooh, I got to go to the bathroom, you just got to monitor them, you got to tell them when to go and even if they go and don’t do nothing, just like sometimes when you training kids and you tell them oh, you better go to the bathroom. (age 65+)

Neglecting One’s Health While Caring For Others

My days are full caregiving… I’m a caretaker of my husband. He had a lung transplant. Also, my mother’s 84 and I have to take care of her and I do think that a lot of times, I just don’t take time to go to the restroom. (age 65+)

I think one of the biggest issues with women health is that we do not take care of ourselves as well as we should because we’re so busy taking care of family and everything else and we kind of neglect ourselves, so and we need to you know we can’t take care of everybody else if you don’t take good care of yourself… And I think your bladder, you know, because that, it gets lots to do with your functions and care and all that stuff, cause a lot of time we do things hold out a little longer than you normally need to hold it. (age 65+)

If you have a lot of children, you cannot leave them and go to the bathroom when you need to go. And then you’re holding your urine and that infects the bladder some. (age 65+)

When I think about women’s health, I think about women not having time to take care of their health or you know knowing just being so busy with family and, and children and grandchildren and just not having time to really do it. I think we know what to do. We just forget about ourselves and put ourselves, you know do things for everybody else. (age 45–64)

We, you know, everybody in the house is gonna be you know 100% health, and we the only one going down and we still standing there trying to make sure they healthy. You know and we could get it in our mind we come first and, and, as you know women, we’ve always looked at ourselves as the last person. You know we fixing up everybody, you know, and then when we up and just die for no reason you know they’ll say, “well but, you know, our family is so healthy but she wasn’t doing enough for her. (age 65+)

I think being a woman period is a big responsibility... The overall responsibility of everything that we have to do, the things that whether we want to do it or not, we have to do it. So you have to really look at yourself overall. Otherwise, you know you’re going to leave something out, where you’re neglecting yourself or your children or tiring yourself out caring for family member or whatever. It’s just a big responsibility. If you are not in good health, you cannot carry out your responsibilities. (age 65+)

I think most of all, we need to pay attention to our bodies more… sometimes our body is telling us that something is wrong, and we have a tendency to ignore it. We put it off, like she said, take care of everything and everybody but ourselves… If it was your child or your husband, we’d be rushing them off to the doctor to see what’s wrong with them, but when it comes to us, we don’t always do that and I, I think that’s why we get into a lot of problems that probably should, could be avoided if we would take care of it sooner. (age 65+)

Individual Systems

On the Individual Level, findings indicated Black women historically have had limited access to information about bladder health risk and protective factors. Adult participants provided retrospective accounts of bladder habits, describing toileting practices developed without benefit of bladder health knowledge. They reported knowing little about bladder function during formative years, speculating that uninformed bladder habits contributed to current bladder issues. Participants considered it important to learn about health and share bladder health knowledge with younger women so they could avoid dysfunction later in life. Adult participants observed bladder changes over time, including impacts of pregnancy, childbirth, menopause, and aging on bladder control. Many considered development of bladder problems as unavoidable with aging. (Table 4)

Table 4:

Individual Systems: Knowledge and Behaviors

Bladder Health and the Life Course

Female health for me has been a long-haul journey trying to understand what’s going on with my body and then able to understand some of what I’ve got going on (with my bladder), I can pass it down to my children and they to their grandchildren… So female health is something, it’s to learn. New development, you know information, it’s unending to understand. (age 65+)

I just think that you know the more we know [about the bladder] and the more we share with even younger women because when I was young, I had no idea that this is on the way and I talked to my nieces, I talked to younger women, and I tell them enjoy, because you know it could happen. (age 45–64)

I think because parents have like a different perspective because like they’re our parents and like their body are different because they’re developed already and we’re still developing so it’s like we might go through different stages. (age 11–14)

Past Self: Retrospective Accounts of Bladder Health Knowledge and Behavior

Knowledge

We weren’t taught at a younger age about bladder, but now we was taught, so I think never too late to learn. (age 65+)

Back in those days, they didn’t explain anything about the body. They just felt like you should know and how would you if nobody explained? Even the doctors didn’t explain. (age 65+)

As you’ve gotten older, so that’s one of the things, that’s what made me start realizing that if it happened to me when I was younger, and we weren’t educated on nutrition health and wellness, we weren’t educated on the importance of drinking water, we weren’t educated on the importance of eliminating the, you know, your bowels and things of that nature. (age 65+)

Behavior

I remember playing outside all summer and when riding bikes. We would ride and not think about it and then realize we had gotten too far from home when we needed to go to the bathroom. (age 45–65+)

I’m a senior now and I didn’t really take care of myself earlier but now I’m trying to now and it’s very important what you eat, what you drink, what you do, you know so I’m really becoming aware of what I need to do for my body, for my life, and so forth. You know sometimes when you’re younger, you don’t think about all this stuff. (age 65+)

We drank Kool-Aid, pop, and all that, you know and, you know, I feel that if you really would take care of your bladder when you’re younger, it make it easier on you when you get older. But when you’re younger, you want what you want. Okay? I want a pop, I want some cognac, I want some gin, I want some wine you know and, you know, you just really don’t think about you know whether it’s going to affect you later. (age 65+)

Current Self: Emergence of Bladder Control Issues

I guess it’s the weak muscles or something that cause you not to be able to hold like you used to but controlling it. You can’t do it anymore at this age. I can’t. (age 65+)

When I was younger, like you didn’t think about it. But now when, when you have to go, it’s like I got to go now. I can’t hold it anymore like I used to, so there’s an urgency. (age 65+)

As I had children, I have five children, I definitely could not hold after I started having children… But now like we can wear Depends and things of that nature and that’s because we can’t hold it as long as we used to. (age 65+)

All of us have it, you know after a certain age, you got some kind of leakage, whether severe or not, you got it but you don’t hear anything about it until you have a problem with it. (age 45–64)

Future Self: Anticipated Bladder Decline

Moderator: Do you think people can have a healthy bladder their entire lifespan? Participant: No, I do not, from experience, age… I think that when you get up in age, you have trouble with it. (age 65+)

Supposedly it’s a known thing that the older you get, your bladder is not going to work and you’re going to have to go a lot, so we just accept it. (age 65+)

If you’re a senior, it’s going to go bad. No matter what you do… you can get whatever but as a senior, your body going to start deteriorating and your bladder is going to deteriorate no matter what. No matter what you take, eventually, it’s going to go bad and when it go bad, sooner or later. (age 65+)

I was thinking you can’t stop it. It’s something you can’t put a Band-Aid on. You can’t literally, like if you cut your finger or cut your hand or something, you going to put a Band-Aid on it, it eventually heal something inside you. You know like your bladder or something like that. You can’t stop it from getting weaker. You can’t stop yourself from not going to the restroom because it going to go (whether) you go or not. It’s going to come. (age 65+)

Before you close is it inevitable that all of us will be wearing diapers one day? I mean, really? [responses from other women in the focus group] Yes. Yes. Yes, mmm hmm. Start saving up now. (age 65+)

Biological Systems

On the biological level, findings echoed concerns about the burden of chronic comorbid conditions impacting racially minoritized women.¹ Participants reported experiencing high blood pressure (hypertension), obesity, and diabetes, seeing a causal connection between comorbid conditions and bladder problems, including issues with emptying, frequency, urgency, incontinence, nocturia, and nocturnal enuresis. Frequency and urgency attributed to diuretic medications were commonly expressed concerns, often prompting delayed use of medication to avoid interference with activities. (Table 5)

Discussion

Participants’ accounts of bladder health experiences and perspectives revealed the influence of racism. They expressed differences in the outlook of the world compared to White women, due in part to early-life and contemporaneous exposures to racial segregation and discrimination. Adult participants described a healthcare system of their formative years that excluded them from accessing information and services because of race. These patterns are embedded in society, reinforcing discriminatory systems and practices, and engendering inequities in health outcomes for Black women.⁷ Currently, participants described seeking healthcare input from elders prior to, or in conjunction with, seeing a doctor. Blended approaches to healthcare, including reliance on elders, may be more common in communities where previous generations were denied access to healthcare, provided with low-quality healthcare, or unable to afford healthcare because of racial identity and related societal constraints on wealth.

Participants described educational and occupational settings that impacted voiding practices. Adult participants described work settings where delaying micturition was a response to job demands. Research on the impact of workplace voiding practices on women’s bladder health indicates women who limit or delay restroom use at work have a higher prevalence of other unhealthy bladder habits and higher rates of LUTS compared to other working women.²³Black women may be more likely to hold jobs with restrictive voiding environments, which have been shown to be associated with bladder health later in life.²⁴

Adolescents detailed school-based restrictions and bathroom monitoring practices which delayed voiding. Schools sometimes used men to police women’s restrooms, breaching privacy, eliciting feelings of vulnerability, and discouraging voiding as needed. Findings are consistent with literature suggesting adolescents perceive school personnel as voiding gatekeepers, prioritizing order and control over students’ bladder needs.^19,25 Recent research with young women reported an association between delayed voiding and urinary incontinence.²⁶

Participants described family caregiving responsibilities including assisting with toileting and monitoring toileting behaviors. They described neglecting their health while attending to family members. Research exploring caregiving practices and expectations among Black women suggests gendered socialization for caregiving occurs early in life and becomes a life-long obligation,²⁷ and for some Black women “a life course of care.”²⁸ The cumulative impact of caregiving by Black women can compete with and compromise physical health and emotional wellbeing.²⁹

Participants’ accounts of bladder health illustrated a growing recognition about how bladder problems can result from bladder habits developed without benefit of mainstream prevention knowledge. Many women believed declines in bladder function were predictable and unavoidable with aging, while also voicing a need for educating younger generations about potential risk and protective factors for bladder health. Although unhealthy bladder habits earlier in life may negatively influence bladder health later in life, some contributing factors may be amenable to change, and awareness and adoption of heathy bladder habits may counter deleterious outcomes.³⁰

Comorbid chronic conditions and medications for treating them were salient concerns. The prevalence of urgency urinary incontinence and nocturia are higher among Black women than women of other races and ethnicities.³¹ Large population-based studies have identified an association between diabetes mellitus and urinary incontinence,³² consistent with participants’ perceptions of the etiology of LUTS. Some participants described occasionally skipping or rescheduling daily medication to avoid urgency or incontinence when away from home, highlighting the need for providers to partner with patients in medication management.

Across the social-ecological spectrum, participants’ comments spoke to the role of intersecting identities of race and gender, as in discussions of caregiving in Black families. Black women’s comments about medical care suggest that structural racism has impacted their bladder health not only as women but as Black women. In contrast, gender is most likely driving bathroom access in educational and occupational settings.

Implications.

On the societal-community level, systemic racism perpetuates barriers to healthcare for LUTS among women from minoritized racial groups.³³ Considering the history of healthcare marginalization and pathways through which structural racism influences health behaviors and outcomes, findings highlight opportunities to address structural issues in healthcare education and services to ensure equitable access for Black women.³⁴ Identification and development of interventions addressing structural determinants of bladder health, particularly those entrenched in racism, should be a priority in research examining Black women’s bladder health.

On the institutional level, service-sector occupational settings staffed by workers from minoritized populations could be refashioned in supportive ways to facilitate productivity without engendering unhealthy toileting practices. Sensitizing workplace managers, school administrators and teachers to implicit biases about toileting behaviors can facilitate the promotion of voiding autonomy in schools and workplaces.

On the interpersonal level, engaging with Black women and their communities is essential to promoting wellness.⁵ Neighborhood or community-based wellness programs for Black women caregivers can provide a supportive environment for empowering them to practice self-care. On the individual level, pediatric, adolescent, adult, and geriatric providers could consider balancing problem-focused treatment with prevention-focused care to preserve bladder health across developmental phases of a Black woman’s life. This could include informing patients about behavioral strategies for optimizing bladder function. On the biological level, individuals with varying sociodemographic characteristics are differentially exposed to social determinants of health. More research is needed to understand how cumulative stress of living in a racialized society can have a weathering effect, impacting physiological processes and producing inequitable health outcomes for Black women.³⁵

Strengths and Limitations.

Strengths of the study include racially and ethnically diverse investigators and two Black members of the PLUS Community Partnership Council, who provided critical review. Study limitations include is its cross-sectional design and the absence of data from 15–44-year-old participants; therefore, our life course perspective uses retrospective, current, and speculative accounts of bladder health experiences of primarily mid-life and older women.

Our findings are not intended to portray or encompass perspectives of all Black women nor are they exclusive to Black women’s experiences. Caution should be taken to avoid re-enforcing stereotypes about Black women’s roles in the home or workplace.

Conclusions

As a composite of social-ecological factors, our findings sensitize us to lived experiences of Black women’s bladder health within the context of structural racism as manifested in (1) healthcare inequities; (2) institutionalized limits on voiding autonomy; (3) patterns of caregiver self-care neglect; (4) lack of access to bladder health information alongside expectations of bladder health decline; and (5) disproportionate burden of chronic illness. Approaches to bladder health education and research for similarly situated Black women should address social-ecological factors.

Appendix: Focus Group Guide Questions

HEALTHY BLADDER

1. Have you heard about the bladder (where it is)?

2. What are your ideas about what it means to have a Healthy Bladder? (or When you hear the phrase Healthy Bladder, what does this mean to you or what comes to mind)  • Do you ever even think about your bladder and it being healthy or not?  • How does it work/function (i.e. what does it do)?  • How does it feel to have a healthy bladder?

3. What are your ideas about what it means to have an unhealthy bladder? (or When you hear the phrase Healthy Bladder, what come to mind?)

4. In your view, what are some of the things that help people to have a Healthy Bladder?  • Anything we do in our daily routines?  • What we do? What we eat/drink?  • Anything about our environment at home? At school? At work? In the community?

5. What are some of the things that might cause our bladders to be unhealthy? (or cause bladder problems)  • Anything we do in our daily routines?  • What we do? What we eat/drink?  • Anything about our environment at home? At school? At work? In the community?

6. Are there certain conditions that might affect your bladder health?

7. Are there rules at home or on the job that might affect your bladder health?

8. When your bladder gets full or is ready to empty, how does that feel to you?  • How do you respond to that feeling?  • How do you decide whether to hold it for a while or to go ahead and go to the bathroom?

KNOWLEDGE ACQUISITION

9. What have you heard about the bladder, where it is, and what it does?

10. How/where, did you learn about your bladder and how it works?  • From whom? Your parents? Siblings? Friends?  • Was it part of any health class at school?

11. How do you think people (your age) learn about bladder habits, that is, when to go to the bathroom or how often?  • Does someone tell you about this? Or did you just figure it out on your own?  • Does anyone teach people your age any certain way to urinate (posture? hygiene?)

12. If someone (your age) had a question about their bladder and/or bladder function, who do you think they would talk to?  • If you had a problem with your bladder, whom would you want to talk to?

LUTS and CARE-SEEKING

13. What challenges have you (or people your age) faced with the bladder, how it feels, or how it works?

14. How do you (or people) cope with the challenges when it happens?  • What do you (they) do to avoid it happening?  • Did you (they) go for treatment?

15. Is there a certain time of day (or night) when your bladder is especially a problem?

16. Are there certain places or activities when your bladder is especially a problem?

TERMINOLOGY

17. What do you (people your age) call it when you go to the bathroom to pass urine?  • Running to the bathroom frequently?  • Waking up at night to go to the bathroom?  • What do you call it when someone has accidental loss of urine before they can get to the bathroom?

PUBLIC HEALTH MESSAGING

18. We are thinking of developing some programs to inform the public about bladder health.  • Do you think people will be interested in this type of information?  • Would the information be useful?  • What are the best ways to get this information to people? (TV? social media, internet? pamphlets? classes?)

Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium

Research Centers and Investigators

Loyola University Chicago -Maywood, IL (U01DK106898)

Multi-Principal Investigators: Linda Brubaker, MD; Elizabeth R. Mueller, MD, MSME

Investigators: Marian Acevedo-Alvarez, MD; Colleen M. Fitzgerald, MD, MS; Cecilia T. Hardacker, MSN, RN, CNL; Jeni Hebert-Beirne, PhD, MPH

Northwestern University - Chicago IL (U01DK126045)

Multi-Principal Investigators: James W. Griffith, PhD; Kimberly Sue Kenton, MD; Melissa Simon, MD, MPH; Investigators: Oluwateniola Brown, MD; Julia Geynisman-Tan, MD; Margaret Mueller, MD; Andrea Villegas, PhD

University of Alabama at Birmingham - Birmingham, AL (U01DK106858)

Multi-Principal Investigators: Alayne D. Markland, DO, MSc; Camille P. Vaughan, MD, MS

Investigators: Tamera Coyne-Beasley, MD, MPH, FAAP, FSAHM; Kathryn L. Burgio, PhD; Cora E. Lewis, MD, MSPH; Gerald McGwin, Jr., MS, PhD; Beverly Rosa Williams, PhD.

University of California San Diego - La Jolla, CA (U01DK106827)

Principal Investigator: Emily S. Lukacz, MD

Investigators: Sheila Gahagan, MD, MPH; D. Yvette LaCoursiere, MD, MPH; Jesse Nodora, DrPH.

University of Michigan - Ann Arbor, MI (U01DK106893)

Principal Investigator: Lisa Kane Low, PhD, CNM, FACNM, FAAN

Investigators: Janis M. Miller, PhD, APRN, FAAN; Abby Smith, PhD

University of Minnesota (Scientific and Data Coordinating Center) - Minneapolis MN (U24DK106786)

Multi-Principal Investigators: Gerald McGwin, Jr., MS, PhD; Kyle D. Rudser, PhD

Investigators: Sonya S. Brady, PhD; Cynthia S. Fok, MD, MPH; Bernard L. Harlow, PhD; Peter Scal, PhD; Todd Rockwood, PhD.

University of Pennsylvania – Philadelphia, PA (U01DK106892)

Multi-Principal Investigators: Diane K. Newman, DNP; Ariana L. Smith, MD; Investigators: Amanda Berry, MSN, CRNP; Andrea Bilger, MPH; Terri H. Lipman, PhD; Heather Klusaritz, PhD, MSW; Ann E. Stapleton, MD; Jean F. Wyman, PhD

Washington University in St. Louis - Saint Louis, MO (U01DK106853)

Principal Investigator: Siobhan Sutcliffe, PhD, ScM, MHS

Investigators: Aimee S. James, PhD, MPH; Jerry L. Lowder, MD, MSc; Melanie R. Meister, MD, MSCI.

Yale University - New Haven, CT (U01DK106908)

Principal Investigator: Leslie M. Rickey, MD, MPH

Investigators: Deepa R. Camenga, MD, MHS; Shayna D. Cunningham, PhD.

Steering Committee Chair: Linda Brubaker, MD. UCSD, San Diego. (January 2021-)

NIH Program Office: National Institute of Diabetes and Digestive and Kidney Diseases, Division of Kidney, Urologic, and Hematologic Diseases, Bethesda, MD.

NIH Project Scientist: Julia Barthold, M.D.

Data availability statement:

We invite interested investigators to contact the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium.