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The Impact of Urinary Incontinence in African American Women
Urinary incontinence (UI) is a condition of uncontrollable loss of urine - a condition one can physically smell, see, and feel.1 Urinary incontinence occurs in people of all ages but older women are most commonly affected.2
Ample evidence suggests that UI affects a person's quality of life. Harris3 observed that the social and physical effects of UI interfere with an individual's relationship with others. One relationship that was significantly affected was the spousal sexual relationship, with some women avoiding sexual intimacy.3 Failure to seek medical care is common, as are social isolation and limitations on activities of daily living.2 The AHCPR Guidelines (1996) reported that urinary incontinence significantly impacts families and caregivers as well as patients who suffer from low self-esteem with isolation and a decreased ability to maintain an independent life style.4
In a subsequent study to test a quality of life instrument using a sample of 288 women, 10 of whom were African American, Patrick et al5 reported the presence of avoidance behaviors with psychosocial impact and social embarrassment.
In a clinical trial of behavioral therapy with elderly white women, Yu6 found that urinary incontinence was associated with feeling blue, anxiety, and helplessness. Additionally, the women expressed concern about the smell of urine, bedsores, and other skin problems.
Results from a large national survey of more than 36,000 community-dwelling people with incontinence suggest that that each individual perceived the loss of bladder control differently.7
While a majority of respondents described their loss of bladder control as relatively minor with limited impact on their life style, 17.7% described their UI as a major problem with important social implications. As in previous studies, the majority (95.9%) of study participants were Caucasian.
In a later but similar survey, Jeter and Verdell8 found that embarrassment was the number one concern, followed by odor. The least worrisome was isolation from family and friends. Nearly 14% described urine loss as a major problem, 26% said it was an occasional nuisance, and 55% said that although the loss of bladder control was always bothersome, it was manageable.
A detailed study of the affects of UI on quality of life was conducted using a small sample of 20 men and women. All (100%) said they felt embarrassed, 80% felt it was important to know the location of restrooms, 70% worried about having sex and avoided going places because of worry about leaking, 50% planned everything in advance, and 45% reported feelings of depression.9
More recently, Fultz and Herzog10 conducted a telephone survey to ascertain the social and emotional impact of urine loss among individuals age 40 or older. The sample included 206 incontinent and 1,116 continent men and women. Eighty-one percent (81%) of individuals with incontinence reported no restrictions in their activities and 61% said it did not affect their feelings about themselves. However, people with incontinence who were younger, male, less educated, and in poorer health, as well as those losing greater quantities of urine, were more likely to report psychosocial distress. Although these correlations were not consistently significant, people with incontinence were significantly more likely to feel depressed, lonely, or sad than people who were continent. A small number of people in this study were African American (6.9% of individuals with incontinence) and race was not found to be a significant variable for any of the outcomes evaluated.
Using a nationally representative sample of 3,566 non-Hispanic Caucasian women and 606 non-Hispanic African American women who were 70 years of age and older and not institutionalized, Fultz et al11 found that older African American women were less likely than older Caucasian women to experience involuntary urine loss.
Payne12 observed that even though UI is not life-threatening, it has far-reaching medical and social implications, affects all levels of society, and data on racial and ethnic trends in the U.S are sparse. It has been suggested that UI among African Americans is more common than originally thought, in part, because data for black women are based on small sample sizes.13
In addition to its emotional costs, UI is a financial burden. In a 1999 study of 115 community-dwelling women with incontinence, the median annual cost for pads alone was $76 per person per year (range $36 to $177).14 Wilson et al15 estimated the annual direct costs of UI to be $16.3 billion in 1995. They reported the costs for community-dwelling individuals with UI were $8.6 billion, which was similar to other chronic disease costs in women.
Because information about the impact of UI in African American women is controversial and based on small sample sizes, data from a descriptive study were analyzed to describe the impact of urinary incontinence on African American women. Specifically, the purpose of the study was to describe the duration and frequency of UI, identify activities affected by UI, and ascertain how much women were bothered by their UI.
Methodology
This was a descriptive study using secondary data from a previous, unpublished study designed to identify risk factors for urinary incontinence in African American women. Using a convenience-sampling method, study participants from the previous study were recruited from an African American women's organization. The organization held its conferences at two sites in North Carolina and two in Virginia.
Inclusion criteria. All members of the organization who attended the conferences were eligible to participate. At the beginning of each conference, the author made a public announcement to invite attendee involvement. The same instructions were given at each location; participants were requested to meet with the author during coffee breaks or following lunch. Completion and return of the survey form constituted subjects' consent to participate. Data were collected from all four meeting locations during a 1-month period of time (October). Five hundred surveys were distributed and 233 were completed and returned for a return rate of 47%. The resulting sample size was 233 participants for the parent study on risk factors. Eighty-five of the 233 participants (38%) reported incontinence symptoms and constituted the sample for this descriptive study.
Assessing incontinence. Urinary incontinence was defined as leaking urine involuntarily and was measured by self-report on the Incontinence Screening Survey.16 The Incontinence Screening Survey consists of 11 questions that differentiate urge and stress incontinence and provides information on number of pads used and amount of leakage. The instrument is scored using a Likert scale, where participants may choose from the options of never, few times/year, few times/month, few times/week, or daily. The instrument also measures the degree of bother using a visual analog rating scale of 0 (not at all) to 10 (intolerable) (see Figure 1). The test-retest reliability of the Incontinence Screening Survey was established by the author. Test retest reliability was determined using split-half calculation on a sample of 233 African American women. The resulting alpha coefficient was .63.
Data analysis. The characteristics of the sample were summarized using descriptive statistics. Descriptive statistics also were used to summarize incontinence duration, frequency of accidents, and pad wetness. The degree of bother scores were tabulated and summarized.
Results
Sample. A purposive sample included 85 African American women, all of whom reported incontinence. Their mean age was 51.94 years (range 20 to 80 years). Participants in this sample were well educated with a minimum of college student status. Approximately one-half of the participants (45%) reported an income in the $25,000 to $49,999 range (see Table 1).
The women's history showed that 54 (64%) had one or more vaginal deliveries - 37 (44%) reported one to two and 16 (19%) reported three to four vaginal deliveries. One person said she had five vaginal deliveries. Only nine women had not delivered vaginally. When asked if they had experienced a hysterectomy, 27 (32%) of the women said yes. Twenty women (24%) reported taking medications, most commonly blood pressure pills (seven or 8%), followed by hormone replacement therapy (five individuals or 6%), as well as tranquilizers, and various others such as allergy medicine, insulin, and prescription arthritis medications. Specific trade or generic drug names were not included in the survey.
Description of incontinence. The women had been dealing with incontinence from a few weeks to 30 years (see Table 2); six (8%) women said they had been incontinent 6 months or less, six (8%) reported incontinence of 10 to 30 years duration, and 11 women (13%) had sought treatment for their involuntary urine loss. The types of treatment included surgery (three women or 4%) and oral medication such as tolterodine tartrate (Detrol, Pharmacia and Upjohn, Peapack, NJ), oxybutynin chloride (Ditropan, Ortho-McNeil, Raritan, NJ), and other unspecified pills.
Of the women with incontinence, nine (11%) reported one or more daily accidents as a result of coughing or sneezing and 25 (30%) said they got wet daily or at least a few times a week when they felt the urge and could not reach the bathroom in time (see Table 3). The prevalence for urge (83%) and stress (74%) incontinence was reported at similar rates; 51 participants (60%) reported mixed incontinence. Regarding pad use, 35 women (60%) reported using one or more pads a day (see Table 4). With respect to pad wetness, 10 women (almost 12%) said their pads were wet to soaked during daytime hours and four said they were wet to soaked at night (see Tables 5A and 5B).
Of the women reporting bladder-emptying symptoms, 22 (26%) had to push or strain to start the flow of urine; six (7%) indicated they had to do so on a daily basis. Thirty-six women (42%) described the urine stream as dribbling, interrupted, or weak. The majority (73 women or 86%) reported they were aware of the urine loss when it occurred; whereas, eight (9.6%) said they found themselves wet after unknowingly passing urine.
The women were asked to identify activities they avoided because of urine loss. Ten (12%) said they modified their behavior by avoiding the following activities: exercise, including running, walking and aerobics (6); sneezing (2); long excursions (2); shopping (3); drinking fluids during a long trip (1); and yard work (1). In addition, the women rated the degree to which their urine loss bothered them (see Table 6). Twelve of the 77 women who responded to this question reported not being bothered at all. A considerable portion (25%) fell at or above the median of 5 on the rating scale. Four (5%) of those said the incontinence bothered them to the point of being intolerable.
Finally, women were asked how they managed their incontinence. Responses included changing underwear more often, wearing extra absorbent underwear, using Vagisil powder (Combe, Inc., White Plains, NY), doing extra laundry, and wearing pads and panty liners. Thirty-nine (16.7%) said they had to spend extra money on laundry and purchasing pads, panty liners, deodorizers, and extra absorbent underwear. The estimated extra costs ranged from $1 to $25 per week.
Discussion
An important outcome of the parent study was documentation of the prevalence of urinary incontinence in African American women, which was found to be similar to the reported prevalence in Caucasian women. This descriptive study also provides preliminary data on the impact of urinary incontinence in a group of non-institutionalized middle-class, highly-educated African American women. The sample was atypical of the general population of African American women. The age range of this sample, 20 to 80 years, demonstrates that some younger women also experienced urinary incontinence. Because 33% of the women reported having had a hysterectomy, one could question if the number of hysterectomies was significantly higher in this group. A history of hysterectomy and increased parity have both been associated with urinary incontinence.17
More than 20% of the women in this group reported losing urine a few times a week or daily, suggesting a considerable impact. It is not known whether the 11 women (13%) who sought treatment were receiving treatment at the time of the survey or if their treatment had been effective. Even though the majority of women had experienced incontinence for 3 years or less, a sizeable portion had endured incontinence for as long as 20 to 30 years.
Of special interest is why the women endured incontinence for so many years. Wyman et al2 suggest several possibilities, including: embarrassment, lack of knowledge about available treatment options, and the belief that urinary incontinence is a normal part of the aging process. The belief that incontinence is a "normal part of aging" does not appear to be affected by culture, country, or race.18,19
Another important outcome is the finding that the number of African American women reporting symptoms of stress and urge did not differ. The presence of stress incontinence similar to that of urge incontinence in African American women is consistent with findings of Duong and Korn,20 who reported that genuine stress rates were higher and urgency rates were lower for African American women than previously reported.
The finding that women modified their behavior for incontinence management by avoiding exercise and/or decreasing fluid intake could have significant health implications, including potential weight problems in the future. This self-report showed that a sizable portion of the women experienced incontinence severe enough to require three or more pads a day. This also may have included some of the women who reported curtailing exercise because of UI. Another future consideration might be to discover why more women did not avail themselves of highly publicized prescription treatment. When daytime and nighttime wetness were compared, more than half of the women were dry at night, versus 13% who were dry during the day. This appears plausible because activities such as lifting, standing, and coughing are curtailed during sleeping hours.
The financial impact of UI on this group (as high as $25 per week) was considerable. Ten women used four or more pads per day and nearly half of the women said they incurred added costs because of the UI. Interestingly, some women said they were not bothered by the incontinence while others found it intolerable. This is consistent with findings of Wyman et al,2 who reported that the experience of incontinence is unique to each individual. The documentation of difficult urinary emptying symptoms in the women has implications for health teaching regarding regaining normal urinary patterns.
Because the data in this study were collected from a convenience sample, the findings cannot be generalized beyond this group. Another limitation of the study is the use of self-reporting, making the results accurate only to the extent that participants were willing to disclose the presence of UI. Despite the fact that the results of this study cannot be generalized, these data could serve as a beginning for understanding the impact of incontinence on a select group of African American women.
Conclusion
Urinary incontinence was present in this group of African American women at similar rates to those reported in Caucasian women. The rates of stress and urge incontinence were similar and caused considerable bother for some, to the point of being intolerable. They managed their UI through avoidance of activities as well as spending extra money on incontinence supplies. Because of the important implications inherent in incontinence coping tactics, more research is needed, particularly in the African American population. Further study could include a comparison of incontinent and continent African American women, as well as descriptive research using a larger and more diverse group of African American women.
