“A secret club”: focus groups about women’s toileting behaviors

Women’s bladder health has followed in the footsteps of women’s heart health by becoming a priority at the national level in the United States. The National Institutes of Health National Institute of Diabetes and Digestive and Kidney Disease (NIDDK) expanded its focus on girl’s and women’s urologic health by creating a research consortium to investigate multi-level factors, including behaviors necessary to prevent lower urinary tract symptoms (LUTS) in women [1, 2]. Better understanding about the reasons for and impact of women’s behaviors and how they may act as barriers or facilitators to bladder health in different environments (i.e., personal environment of home versus public environments that include workplace and social/community) is viewed as being important to prevent and manage two prevalent LUTS: 1) urinary incontinence (UI), and 2) overactive bladder (OAB), which includes urinary frequency, urinary urgency with and without urgency urinary incontinence [3, 4].

Because women live and work in various physical and socio-cultural environments, they may adapt their usual toileting behaviors or develop new ones either by choice or out of necessity. For example, some women may ignore the physiologic need to urinate and not use the toilet while they are at work due to limited breaks [5], limited number of available toilets, or lack of opportunity to leave work to urinate [4, 6]. As a result, women may develop a habit of pre-emptively voiding when the opportunity to urinate arises [7] or straining for voiding initiation [8]. Our objective for this study was to better understand what women know about bladder health and what they say about meeting urination needs.

Focus groups were conducted between January and March 2015 in two locations in the United States: Chapel Hill, North Carolina and Philadelphia, Pennsylvania. The aim was to elicit women’s responses about what a healthy bladder meant to them and to identify behaviors they used to urinate at home and away from home. Administrators from the sites, an urogynecologic clinic (North Carolina) and two senior centers (Pennsylvania), provided access to potential participants and private conference rooms on the day of the focus groups. Senior centers are community centers where older adults engage in multiple social, physical and intellectual activities to help them remain healthy and independent. The Institutional Review Boards of the University of North Carolina at Chapel Hill and the University of Pennsylvania approved this study.

Women, regardless of their UI and OAB status, from ethnically diverse backgrounds aged 21 years and over who were not pregnant, and who could read and write English were eligible to participate. Women were recruited by displaying IRB-approved flyers in clinics and senior centers, email listserv, and by word of mouth. They were contacted again by email or phone call 24-h prior to the focus groups. Women who agreed to participate provided written informed consent prior to the focus group discussion.

Two trained female research team members (BR and DKN) moderated the focus groups and used a discussion guide with probing questions to facilitate participation. The discussion guide reflected major constructs from the Toileting Behaviors: Women’s Elimination Behaviors (TB-WEB) questionnaire: place preference for voiding, premature voiding, delay voiding, straining voiding, and position preference for voiding [9]. The research team revised the discussion guide that included seven interview questions with associated probing questions in consultation with a qualitative study design expert. An additional file contains the discussion guide, see Additional file 1. A research team member attended each focus group to obtain written informed consent, take field notes, assist with distributing refreshments and study materials, administer and collect questionnaires, and distribute $25 gift cards to the participants.

Women were told that the session would be audiotaped, but they were assured their identity would be kept anonymous. At the end of each focus group, they were asked to complete an anonymous questionnaire that elicited information on several demographic variables, and two validated instruments that are part of a series of questionnaires used in clinical practice to evaluate treatment effectiveness and impact of symptoms. The International Consultation on Incontinence Questionnaire-Short Form (ICIQ-UI SF) (four items) [10] is used to assess symptoms and impact of UI and the International Consultation on Incontinence Questionnaire-Overactive bladder (ICIQ-OAB) (eight items) [11] is used to assess symptoms and impact of OAB.

The audiotaped data were transcribed and then coded/analyzed using Atlas.ti7. Coding was an iterative process in which two investigators reviewed transcripts independently to develop coding schema and identify common themes. The investigators discussed the themes they identified and refined/collapsed those themes. The transcripts were re-reviewed and to the greatest degree possible, the investigators sought to define themes and coding schemes based on the input of focus group participants, as opposed to the structure of the focus groups, which can be influenced by the moderator, or existing frameworks, or definitions in the literature.

Twenty-four women (average age 68 ± 13.4 years) participated in focus groups that lasted approximately 60 min. Most women reported had UI or symptoms of OAB, see Table 1.

Animated talking, often interrupting or talking over each other, was a frequent behavior. Participants expressed support for women with UI, with one woman saying, “we are not embarrassed with it.” Another woman said, “it’s not an old-lady, you know, syndrome. It can happen to anyone.” She also said that it was as if they belonged to, “a secret club.”

The moderators asked the women what bladder health meant to them. Many women had difficulty in describing it. They talked in general terms such as: 1) how the bladder functions; 2) the presence or absence of infection or disease; and 3) control over the bladder. For example, when the women talked about bladder function, they mainly talked about the bladder’s emptying function, e.g., emptying all the urine stored in the bladder, having a blockage that did not let urine empty, getting rid of wastes, and not having to use the bathroom frequently. The women also talked about bladder health, in terms of the presence or absence of symptoms. One woman mentioned, “burning,” and another woman said, “pain in her back.” A woman talked about having bladder cancer in the context of bladder health because a family member had had bladder cancer.

Most women talked about bladder health as control, i.e., the ability to control or hold urine and keep it from emptying accidently or unintentionally. One woman said bladder health was, “pretty much control.” Control under certain conditions was also discussed such as drinking large amounts of water, holding urine and waiting too long to go to the toilet, and being able to hold urine longer at certain times compared to other times. Women also discussed bladder control challenges when taking medications, especially diuretics for blood pressure.

The women participating in the focus groups were willing to talk about bladder health and toileting behaviors. They had difficulty in describing bladder health. This is not a surprising findings given that until recently no bladder health definition existed, [12] and there has been little emphasis by researchers or clinicians on the importance of bladder health as a component of overall health [13]. In this study, most women viewed bladder health in terms of the bladder’s emptying function, absence of infection or disease, and control over urination. Despite their difficulty in describing bladder health, women readily described behaviors they used to manage urination. They were frank and unabashed in discussing personal experiences of being incontinent, about wearing pads or panty liners, and having urinary urgency or uterine or bladder prolapses with a group of women they just met. Some women used humor when talking about their bladders. During most focus groups, there was laughter and talking over each other as women volunteered personal information about near or actual episodes of urine loss. The use of humor when talking about UI has been described as, “testing the social waters for risks to self-esteem or safety in disclosure” [14].

Women used terms like, “pressure”, “fullness”, “heaviness”, “urge to go”, and “indicator feeling.” These are similar to categories created by Das and colleagues (i.e., “urgency, fullness, pressure, tickle/tingle, pain/ache, heavy, normal, intense, sudden, annoying, uncomfortable, anxiety, unique somatic,” [15] p. 161). Understanding the language women use in describing sensations related to their bladder and its function is important for healthcare providers to know and potentially use when eliciting information from women during screening, clinical assessment, and education. This information may help clinicians to discriminate the urinary urgency sensation in women who have urinary urgency from women who do not [16].

Earlier a focus group conducted with 25 women explored the relationship between “conscious decision-making processes and bladder sensation to determine the need, time, and place to void” [17]. The authors found that women are often prompted by cues or signals other than the urge sensation to urinate, although awareness of bladder volume was the key final factor in decision to urinate. Our findings were similar to Harvey et al.¹⁷; many women talked about making decisions to urinate because toilets were available, it was a convenient thing to do in relation to other activities, or other women suggested using or were using the restroom. Some women anticipated the need to urinate before the need itself occurred by considering the amount of fluid they had ingested, the distance and times to the next restroom, and upcoming work and social activities. Women considered a range of factors beyond bodily functions when deciding to use the toilet to urinate. A combination of physiologic, cognitive, psychosocial, and environmental factors appears to play a role in toileting behaviors. The cumulative effect of these behaviors and environmental effects on risks of developing UI or OAB over the lifecourse is not known.

Many women worried about cleanliness of public toilets. This worry can start in childhood, with children disliking unpleasant smells or experiencing bullying in school restrooms [18], and continue throughout adolescence [19] and adulthood. As other authors noted, women must attend to several biologic functions: urination, defecation, and menstruation, often in public places. The sight and odor of the products of these functions can elicit feelings of disgust and generate an unconscious disease-avoidance behavior [20].

Variation in perceptions about cleanliness existed with some women saying that they did not worry about cleanliness of public toilets while others had considerable worry and used different toileting positions away from home. In a recent survey, 98% of employed women (average age 48 years) reported sitting on the toilet often or always when at home, while only approximately 68% sat on toilets often or always when away from home [21]. Young women between 18 and 25 years old also reported worry about toilet cleanliness (87%); approximately 47% pre-emptively voided, and 67% delayed voiding due to busyness [22]. These researchers found that specific toileting behaviors were associated with LUTS.

Further research is needed to better understand the relationship between toileting behaviors and UI and other LUTS. Two unidirectional relationships may be possible. First, women change their behaviors to adapt to LUTS and second, behaviors women use to urinate play a role in LUTS development and progression. A bidirectional relationship may also exist; thus, more research is necessary to explore the underlying mechanism between behaviors women use and disease development and prevention. A surprising finding was that some women intentionally did not fully empty their bladders when they urinate, usually when they were away from home. Further investigation is needed about the prevalence of this behavior in the adult female population and its impact on bladder health.

Women with and without UI and OAB participated in the focus groups and no attempt was made to correlate behaviors with urinary symptoms due to the exploratory nature of the study. Women with UI and other LUTS may engage in different behaviors than women who do not. Better understanding the role of behavior and environment in the natural history of different LUTS, especially UI and OAB, is vital to prevention and treatment of these prevalent symptoms.

Understanding how women talk about their bladders and the behaviors they use to manage urination will assist researchers in identifying factors that may affect bladder health. In our focus groups, women were willing, often eager, to talk about their bladder symptoms as well as their toileting behaviors despite the sensitive nature of the topic. The information gained from this study will facilitate the development of relevant public health messaging and interventions to raise public awareness about LUTS. More research is needed about the relationship among bladder health, toileting behaviors used in different environments, and the development and progression of UI and other LUTS in women.