Women's experience of revealing perinatal bladder function—Implications for midwifery care
Article Outline
Summary
Comments of women engaged in a longitudinal study of urinary leaking from first trimester to 12 months following birth provide the data for this paper. Useful insights into the factors contributing to the maintenance of silence and ways to break the barriers to discussion of urinary incontinence before, during and following pregnancy were revealed. Given the prevalence of 30% of Australian women experiencing urinary leaking following pregnancy, it is imperative that midwives engage in discussion and support prevention of this unwelcome outcome of childbirth.
Keywords: Perinatal, Urinary incontinence, Communication, Midwifery, Assessment
Introduction
Midwives are positioned within maternity care to engage women in meaningful discussions about their bladder function and health. However, midwives and other care providers are hampered by the lack of evidenced-based guidelines to support this area of practice.
In Australia one in three women who have ever had a baby, and six in 10 pregnant women, involuntarily leak urine.1 This prevalence rate means that from the 41% of Australian women giving birth for the first time each year,2 there is a potential of 30,900 new cases of childbirth related urinary incontinence (UI), annually.
In spite of this prevalence rate, very little research has been done in the area of prevention during the childbearing experience. To date, textbooks, curricula and practice do not reflect this area of health in the provision of midwifery care. There is a major gap in the evidence for best practice that prevents the development of evidence-based guidelines for care.3, 4
Developing knowledge and skills in assessing bladder health is important, not only for midwives but for all those providing care to pregnant women. It is a neglected area of the assessment by many health care providers, resulting in a high rate of under-diagnosis.5, 6, 7, 8 The perceived social stigma of urinary incontinence9, 10 plus the fact that women often regard UI as a ‘normal outcome’ of childbearing or ageing11 also leads to under-reporting. A review of the large amount of research in the area of incontinence indicates that little has been done to address perinatal women's perspective on this important women's health issue.8
A recently completed prospective longitudinal study explored women's bladder function through pregnancy and the first postnatal year. The data included childhood and pre-pregnancy factors, as well as those related to pregnancy, labour, delivery and the postpartum. Two of the main findings previously reported from this study were that leaking urine prior to the first pregnancy puts women at 4.14 times the risk for postpartum incontinence,12 and that there is a distinct pattern of urinary leaking across the perinatal period regardless of parity.13 These findings provide the beginnings of a framework for preventive care. This paper reports the analysis of the women's comments about their experiences of bladder health and function before, during and after pregnancy. The aims were to provide access to the women's perspective of being engaged in describing their bladder function and to inform the development of effective modes of assessment and prevention.
Method
Face to face contact, using questionnaires supplemented with discussions with women, were a central feature of engaging women in an ethically approved prospective longitudinal study. A total of 162 women with no known pregnancy complications were recruited from the antenatal clinics during their booking visit. Women completed a series of interactive questionnaires with discussion at the end of each trimester and again 2 days, 3 months and 12 months postpartum. One hundred and thirty-five women completed the full set of study questionnaires and interviews. The main reason for withdrawal from the study was geographical relocation. The final sample for analysis was 124 as 11 women who were pregnant again at 12 months postpartum were removed from the final analysis. A more complete description of the sample has been previously reported and confirmed as representative of the annual birthing population in the hospital.13
Questionnaires (three Antenatal and three Postnatal), included data about women's lifelong bladder function, current bladder function and other related information. At each data collection time the research midwife reviewed the questionnaire with the women. This provided the opportunity to reveal issues, and to clarify or augment their responses verbally as well as to make notes in a “Comment” section at the end of each questionnaire. Thus, the questionnaires have been termed, “interactive questionnaires.” As the study progressed over time, women's comments increased in both quantity and richness as they were talking to someone they knew and trusted.14 Comments made verbally to the interviewer were noted on the questionnaire in the presence of the woman.
These comments were extracted into an Excel database and organised in clusters of similar topic or concern by the first author. Content analysis15 was applied to the comments, searching for similarities and differences within and between the clusters. The second author analysed these clusters and where agreement was unclear, data were discussed and reclassified if necessary to obtain total agreement. This sometimes required reviewing the comment(s) within the context of the questionnaire. Once validated as clusters of similar meaning, concepts were chosen to identify the content of that cluster.
Findings
The women's comments reflect the sensitive nature of bladder function within women's lives and their experiences in describing it to others. It is clear that they were willing to discuss this issue when asked, but that it remains a difficult topic for both women and caregivers.
Maintaining the silenceWomen described the silence that continues to surround this area of women's health care:
“I feel the whole bladder/pelvic floor issue is a conspiracy of silence—I can’t understand why no one talks about it or tells women about it.”
“We need to make this issue less ‘hush hush’!”
“I think this is a very neglected area of women's health—it's hushed up. I hope things are different when my daughter has her babies”
Within the first two trimesters of pregnancy 14% of the women revealed bladder function issues. However, they had not disclosed this information to their primary caregiver. They identified factors that contributed to the silence.
Fear and shame
Feelings of shame, embarrassment and fear were common themes in women's stories. These feelings immobilised some women from seeking help:
“I have been too embarrassed and scared to ask for advice or help”
“I am embarrassed that I need to go to the toilet so often … I was seeing a physio for this problem before the pregnancy but I’m a bit embarrassed to go back as I think they will be annoyed with me”
Worry that existing bladder problems would worsen as a result of their pregnancy also kept 7.2% of the women from asking for information or support:
“I don’t want to end up like an older lady I work with who needed surgery”
“I was really frightened that my bladder problems would get worse and that I would need an operation”
Coping with leaking
Some women (6.4%) employed strategies to manage their problems such as reducing their fluid intake or using inappropriate products such as toilet paper to manage urine loss (2.4%).
“I have decreased my fluids as I worry about urinary leakage and frequency/urgency at work or when travelling to and from work”
Women (4.8%) managed bladder problems within their daily lives in various ways. As one stated, “I always sit on the aisle in the movies or on a plane so I can get to the toilet easily”
Distressing associations
Questions about pre-pregnancy bladder function led to some women making connections to other health issues or life experiences that were unexpected and/or distressing. Associations between urinary leaking and sexual abuse (5.6%), depression (10.4%), eating disorders (1.6%), repeated childhood urinary tract infections (7.2%) or drug use (4.8%) were common reasons for not initiating review or disclosing urinary leaking. Once stated, some women would not elaborate further nor agree to disclose to their caregiver. These issues were multi-layered and interwoven. As these comments and each story of association is unique, direct quotes from these women are not included to protect confidentiality.
A different kind of normal
Pregnant women who had experienced bladder health problems for a long time had difficulty considering them as problematic. One women stated that chronic cystitis had “ruined her sex life” with her husband and she would “lie there after sex wondering if I will have cystitis in the morning.” This woman had taken multiple courses of antibiotics including just prior to her pregnancy. When encouraged to disclose this history to caregivers, she replied, “but I don’t have a problem.” Another woman had first started leaking urine when vomiting late in a previous pregnancy. Her nausea and vomiting were worse with this pregnancy and she was already leaking when vomiting in the first trimester. She had not tried any prevention for vomiting and needed encouragement to discuss this problem with her midwife.
Multiple changes to bladder function during the course of their childbearing experience confused or surprised some women 6 months or more after giving birth. They were required to redefine ‘normal’ bladder function:
“My bladder has changed so much since getting pregnant I’m not sure anymore what is normal”
“I have learned about the changes to my bladder due to different things like hormonal changes—I’m learning what is normal for me”
“I feel like everything is back to normal which really surprised me because all the other women I spoke to had problems so I thought I would too!”
A small number (2.4%) of women on this study acknowledged that they were so used to their bladder problem that it “felt normal”—it had become integrated into their lifestyle and was not necessarily seen as problematic.
“I guess it was easier for me as I already had problems with leaking urine so it didn’t come as such a shock to me to be leaking after the birth as it would for someone who has never experienced this—my life hasn’t really changed much because of it”
“I leak urine but I’m not really sure if that's a problem …”
Postnatal ‘bladder blues’
Postnatal changes to bladder, bowel and pelvic floor function (50.8%), were often the most distressing for women on the study.
“It feels like everything down there is flopping around”
“It feels like everything is falling out when I walk around”
For some women these changes were a primary focus of concern, while others felt it was low in their list of postnatal priorities.
“I need to focus on my bladder once everything else in my body has repaired and my baby is okay”
Women's focus on their bladder and pelvic floor was seen to reduce over time.
“I wondered if I would ever be the same again, but it was just a matter of time for my body to heal and get back to normal”
“We had lengthy discussions about our bladders at the new mother's group (mainly about how no-one was doing pelvic floor exercises), but we’ve stopped talking about our bladders now—we’ve moved on”
Some women believed that changes in their health behaviours during pregnancy, including pelvic floor exercises, had a positive pay off in the postnatal period (32.2%). In some instances women reported a level of bladder function that was even better than their pre-pregnancy level (9.6%).
“I’ve noticed since having my baby I’m more aware of how my body functions and what it needs.”
“Everything is OK. My bladder has improved since giving birth, the pelvic floor exercises have made a big difference.”
Breaking the silenceWhile previously experienced in contributing to the silence surrounding UI, the women also found a voice during the study. Their comments provide several cues for caregivers.
Importance of language and trust
Without prompting, 28.2% of women in the study stated that the trusting relationship built up over time with the researcher, and the language used in the questionnaires, were key features in their being able to discuss embarrassing and very personal issues. This approach was also important in engaging and retaining them in the study over nearly two years.
“… you need to talk to someone face to face about this—someone who makes you feel comfortable, because it's really embarrassing”
“I would only share all this information with you because I know you and I trust you”
“It was nice to have someone to talk to early in pregnancy without getting a big lecture”
Raising awareness increases advocacy
Women overwhelmingly believed that being in the study was a positive personal experience (93.4%), raising their awareness of bladder function and health (91.1%), and allowed many to understand that leaking urine is not normal and requires help and treatment (21.7%).
“It was great being on the study—I really enjoyed it, and even if it didn’t help me (because I don’t have any problems) it might help some other woman”
“It feels good to know that I’m helping others by being in the study”
“I feel really positive about being in the study, I’ve helped other women”
Women on the study also recognised that their participation in this research had positive implications for women's health and the future care of other women (29%), with some (13.7%), using the knowledge acquired on the study to educate and advocate for other women.
“Even though I didn’t have any problems with my bladder after birth I have talked to a few friends who do—I sent them to the hospital for help which has been great. One is going to have surgery because her problem is so serious—I can’t believe she didn’t know she needed help!”
“I tell all my pregnant girlfriends about this because they don’t know anything about it – they’ve never heard about it – I’d never heard about it before the study – yeah I tell them all now – it's really important”
Women felt that being on the study had increased the attention and focus on this aspect of their health both by themselves (31.4%), and the health professionals caring for them.
“Being on the study made me think more about my bladder, my fluid intake and my pelvic floor”
“… being on the study made me pay attention to my body and helped me understand what to do if I had bladder problems”
Coming out of the ‘water closet’
Some women (9.6%) felt liberated to speak about their problems—sometimes for the first time ever. The language of the questionnaires and the discussions of their answers gave them a voice:
“Yeah, I’m more assertive now and more open about it with my husband and my older children”
“If I had not been on the study I don’t think I would have acknowledged or sought treatment for my bladder problems—I would have ignored them and definitely not seen a Physio” (Psychologist)
“I don’t feel so embarrassed now about leaking urine—I know now that I’m not the only one”
Initiation by health professionals
Women's comments indicated they want to be asked about this aspect of their health—and not just when they are having a baby:
“I strongly believe that health care professionals need to ASK women about their bladder”
“Doctors should ask about your bladder every time you have a check-up.”
“I felt the midwives did not really want to talk to me about my bladder problems”
“I learned so much about myself and my bladder, especially pelvic floor exercises—Doctors never talk about them”
As in earlier research16 we learned that women will talk about this issue but they need us to initiate the discussion.
“I have been treated by the same doctor for nearly ten years … the question of whether I had any concerns about my bladder function has never been raised by him. I also never raised the topic and I had come to feel that this function was my own concern, to monitor it by myself, and only to raise concerns if needed.”
Incorrect or inappropriate advice by health professionals was described by 4% of the women, and our words can compound what is already a painful problem for women and contribute to the problem of women remaining silent about this issue.
“I cannot express what a slap in the face this antenatal visit was. How was this midwife to know what I lived with in my everyday life? I felt like changing delivery venues to avoid her care. But the most unfortunate consequence of her ignorance is that when other women do mention the forbidden incontinence problem to someone like her, they will learn to keep their mouth shut and possibly miss the opportunity to be referred to proper care.”
Interestingly women who were also health professionals, acknowledged increased awareness and knowledge:
“It was good that you didn’t presume that just because I’m a nurse that I’d know all about it”
Some of these changes had a direct effect on the care that these practitioners gave to their own patients:
“Even though I’m a GP I learned a lot”
“I work as an AIN in a Nursing Home and became more interested in incontinence among patients as a result”
“I am a GP and I was very aware of the Hawthorne effect on me during the study—it really raised my awareness both personally and professionally. It made me think about how other women get help and information for their bladder problems, and how health professionals should ask about bladder more.”
Discussion
Urinary incontinence is an unwelcome and unacceptable outcome of childbearing. Women's description of leaking urine becoming less problematic toward the end of the postnatal year is consistent with the recently identified pattern of perinatal urine leaking that showed a significant proportion of postnatal UI self-resolves over the first year.13 However, these women also demonstrated the continued normalisation of postnatal UI even though they had become more aware of bladder health during the study.
Implications for practice
Findings from this study highlighted the importance of taking a thorough and integrated history from each woman, as the reason/s for leaking urine may prove complex, varied and highly sensitive. Asking about this issue requires high levels of trust. The relationship between a midwife and a woman that develops over time appears to be the most effective in engaging women in talking about the complex issues that may surround their bladder function. This finding further supports the positive outcomes for women that occur in models providing women with continuity of care and carer. There are implications for rostering and booking-in antenatal clinics to ensure the continuity that allows for more information to be forthcoming over time as we experienced in this study.
Models that fragment history taking to a series of assessments of health and obstetric histories, depression risk, sexual abuse and drug use also reduce the possibility of the woman telling her-story. Midwives must be prepared to explore with caring and respond appropriately to issues that women raise in the course of any interaction. In addition to providing women with appropriate education and treatment, creating a ‘safe’ environment for disclosure is important.
Leaking urine is often embedded or interwoven with other aspects of the woman's experience and midwives need to become more aware of these links in order to ask women about them. Knowing more about healthy bladder habits is important for both midwives and women.17 Midwives also need to access current resources, to gain further information for themselves and for women, in promoting continence and pelvic floor strengthening.18
Acknowledgements
The authors acknowledge with deep gratitude the women who gave their time and willingly provided sensitive information; the staff who facilitated a longitudinal study across the maternity services of a busy hospital and the funding provided through grants from the Royal Hospital for Women Foundation and the NSW Nurse's Registration Board, Category 5 Scholarship.
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PII: S1871-5192(06)00002-3
doi:10.1016/j.wombi.2006.01.001
© 2006 Australian College of Midwives. Published by Elsevier Inc. All rights reserved.
