Health Care Professionals, Continence, Stigma and Taboos

Christine Norton, PhD, MA, RN

Nurse Consultant (Bowel Control), St. Mark's Hospital & Honorary Professor of Nursing, Florence Nightingale School of Nursing, King’s College London

Author for correspondence:
Professor Christine Norton.
Physiology Unit, St Mark’s Hospital,
Northwick Park, Watford Road,
Harrow, HA1 3UJ, ENGLAND
Tel: +44 (0) 208 235 4167.
Fax: +44(0) 208 235 4162
E mail: chris.norton@nwlh.nhs.uk 

Normal bladder and bowel control

The human body is essentially characterized by “absence”, a lack of conscious awareness of physical functioning (1) . Until something goes wrong we do not generally notice the day-to-day internal functioning, which we want to be able to take it for granted, paying little attention to what how or why it functions in health. This has been termed the “organic silence” of the body in health (2) . We only become aware of the body’s functioning when it is not working properly (1) . Illness or dysfunction call forth an awareness of bodily functions, an effort is involved in normally taken-for-granted activities and we turn inwards and become increasingly sensitive to the functional performance of the body (2) . The body is an environment which can become anarchic, our sense of self is threatened by disease and by social stigmatization (3) . We are obliged to “own” our body, but may well wish to disown dysfunctional parts which give rise to stigmatizing symptoms such as incontinence.

Bladder and bowel control are complex, and as yet poorly understood, skills and most adults have great difficulty in describing what they actually do to defer the urge to urinate or defecate until a socially convenient time and place is reached. Most people learn control at a time of life prior to that accessible to the conscious memory of adults later in life (usually thought to start at about four years old). Many complex voluntary skills, once learned and truly “incorporated”, become inaccessible to, indeed interrupted by, conscious effort (1) . Bladder and bowel control are among many bodily functions which, while not reflex processes, are difficult for the individual to describe; one knows “how” to do it, but cannot necessarily access the individual components of the activity. When a habit is acquired the body harmoniously “understands” what needs to be done, without conscious effort (4) . As with other complex skills, such as riding a bicycle, one can describe the components of the activity, without actually being able to articulate “how” to put those components together and achieve the desired result.

This makes communication about incontinence difficult, both for the individual to describe the problem and for the health professional to help by “teaching” techniques for improved control. There may be a lack of a mutually understood vocabulary with which to express symptoms. The individual who has never discussed these bodily functions before may lack internal constructs with which to describe what is happening verbally, or may genuinely not understand how to express a change from a former state that was never consciously articulated or even thought about.

Stigma and social exclusion in health care

Attitudes of health care professionals can promote or exacerbate exclusion of people from accessing legitimate health care. Attitudes to incontinence do seem to be changing gradually, but often remain negative. Incontinence is still too likely to be seen as inevitable in some patient groups, particularly older people and those with disabilities.

Given that continence is a socially defined concept, maybe attempting to manage it within the medical model of “illness” is doomed to failure. In the UK InContact surveyed incontinent people, asking what would help the most. By far the most common request was not for treatment, but for more public toilets (insert ref). As health professionals, we often seem to blame the individual for having a bladder or bowel which does not conform to normality and then spend our efforts seeking to cure the individual, when really the “problem” is that adequate facilities are not provided to enable people to cope. If you are sick, you need to be made better, taking the onus of control away from the individual and creating an expectation that drugs or surgery will find the cure (5) . However, in multiple studies of treatment for incontinence, it is seen that behavioral change and showing the person how to retrain their own bladder or bowel has as good, if not better results than medical treatment (6) .

Because incontinence is seen as embarrassing, people are not vocal about their needs, hence becoming marginalized. Few people are willing to “come out” and campaign for better services or greater awareness. Society is held together by common norms. Because incontinence transgresses one of the basic rules of society that we are all taught in infancy, it is too easy to see incontinent people as outsiders, deviant.

Coping and control

Continence is essentially a matter of control. When a disease or disability cannot be “cured” the individual must try to cope with symptoms and their ramifications. Nurses can help patients to “reframe” a previously held secret so that the tension and fear of discovery are transformed into the open sharing of a problem (7) . What is often needed is to let go of an unattainable ideal, to re-define the situation and develop realistic expectations of function (7) . By recognizing the patient’s own expertise about their body, the experiential knowledge gained from living with a chronic condition, people can learn to recognize their own bodily signs and listen to their own body.

The concept of coping has been extensively researched, seemingly without a great deal of consensus between experts as to what they are trying to measure and what constitutes positive coping. People cope with stressors in their lives in many different ways. Some take positive action, while others are more passive or even withdraw and deny. It cannot be said that any particular coping style is “better”. Lewis has proposed five types of control: processual, contingency, cognitive, behavioral and existential (8) . When an individual experiences an uncomfortable or stressful event, different types or levels of control may become operant. Increased participation in decision-making has been found to be associated with a reduction in anxiety (8) .

Processual control involves an exchange between an individual experiencing a stressful event and a relevant other who is seen as having power to affect the event. The individual is not seen as a passive recipient of information but rather an active participant in decisions about her/his own health. Contingency control involves the patient perceiving a direct relationship between her/his response to an event and the outcome. Locus of control has been used as a concept to describe an individual’s habitual beliefs about this control.

Some people exhibit “learned helplessness” in an environment that is perceived as beyond control (9) . They give up, as there is an expectation that whatever their response to a situation is, it has no effect on the event; outcomes are not seen as linked to her/his own behavior. Anxiety is caused by unpredictability and uncontrollability. Conversely, those who perceive a link between their actions and the outcome, or who can predict events and outcome experience a sense of control, with higher levels of motivation and lower levels of anxiety and depression. If events are experienced as totally unpredictable, there is a lack of a safety signal to predict unavoidable danger and so the individual never has a sense of being safe (9) .

Cognitive control refers to being able to handle an event emotionally so that it is redefined or reappraised as manageable rather than catastrophic. Behavioral control involves using a behavioral repertoire that actually does change the properties of the event. Existential control involves the individual understanding a situation; if it has meaning the potential for threat is diminished. An event with meaning and purpose is more tolerable, and it has been found that this need for meaning may be more important than “objective” control of a situation (10) . Even though the event may still happen, it is perceived as understandable and so less threatening as the world is in control. The individual perceives themselves not as a random victim, symptoms have a cause and a meaning and they are not alone in their plight and the stressor can be re-evaluated more positively.  Health education is more than simple imparting of information; it should also include strategies to increase the individuals ability to employ these five types of control (8) . If a stressful situation permits control, then that control should be aimed for. If not, emotions engendered by that lack of control need to be managed and coped with.

Nursing and incontinence

Bladder and bowel care is one of the "basics" of nursing care. However, there is a very limited research knowledge base from which to plan effective nursing interventions. Even prominent nursing texts which devote a whole chapter to elimination, give no guidance as to nursing care for someone with faecal incontinence other than the practicalities of changing the incontinent person (11) . While these authors encourage a positive attitude ("…faecal incontinence should be seen as a preventable and curable problem. It must not be accepted as inevitable"), they offer no clues as to how this might be done.

"Basic" nursing has come to have a low status in a technological era, and this, together with an ambivalence to body care (12) , has often meant that continence care is the preserve of the most junior nurses. Clearing up incontinence has always been seen as an inevitable part of nursing, that few question. Many assume that common sense alone will suffice to cope (13) . Because of society’s taboos on excreta it is almost inevitable that many will feel repulsion when dealing with excreta, but as nurses they are expected to repress these feelings and it has been suggested that some nurses may derive satisfaction from the care involved in transforming a soiled patient into a sanitary condition (13) .

Perhaps the fact that nurses must break society's rules and become involved with the excreta of others, has meant that nurses in turn have developed their own rituals in order to enable detachment from their emotions on the subject, such that they can deal with incontinence without having to think about it too much. This has been labeled “mutual pretence” in relation to urinary incontinence, with both nurses and patients reluctant to initiate a discussion about the topic. Care for incontinence is seen as a job to be hurried and finished so as to get on to the more pleasant aspects of nursing; patients carefully guard their embarrassing secret. Both nurse and patient see the other as unconcerned by incontinence, neither initiating a conversation (14) . It may be that dealing with bowels in a highly ritualized, routine manner may help to manage the nurse’s own distaste and embarrassment, but this will militate against individualized patient-centered care and exploring the issue in any depth.

Because some aspects of bodily care are normally considered private and unspeakable (12;15) it has often been difficult to articulate nursing's knowledge about the body and how to care for it, with both a lack of vocabulary and a failure to describe processes which are so fundamental to basic nursing. Incontinence is a topic that is likely to make many people (both nurses and their patients) feel uncomfortable, and so it is often easier for the problem to be ignored or managed symptomatically rather than confronted and tackled. Nurses find faeces (and sputum) difficult, but are not allowed professionally to display any discomfort (12) .

Nurses have a special relationship with the bodies of their patients. We are allowed, indeed expected, to know things and to do things to the bodies of others that are normally considered taboo in our society. This "dirty work" (12) tends to make others feel socially uncomfortable. The body has been "privatized" in our social life (12) . Nurses have privileged access to the bodies of others and can discuss matters normally hidden because of taboos.

Nurses themselves are the therapeutic agent in many situations. In our technological age, human pain and dilemmas are easily reduced to “problems to be solved”, with the patient seen as a series of separate symptoms rather than as a whole person with a lived experience of their particular problem. The help that nurses give goes beyond narrow definitions of “therapeutic” (where change equals a measurable improvement) to helping which is much more difficult to quantify, including mobilization of hope, finding an acceptable interpretation or understanding of the condition and assisting the individual to use social, emotional or spiritual support (7) .

Patients have identified many ways in which nurses facilitate coping: by spending time with people, facilitating learning, independence, coping, acceptance of a new body image, calming fears, building trust, giving confidence, allowing the experience to unfold (16) . The nurse acts as a facilitator of coping behaviors by assisting patients in locating and choosing among their own life choices (16) .

Interaction between the nurse and patient is a two-way process, and often the patient’s perspective has been relatively unexplored. In chronic conditions a quick easy remedy will seldom be found and patients need realistic expectations, but also to learn to trust their own judgment and evaluation of the situation (17) . The nurse must also learn to trust the patient, in a reciprocal relationship of trust, acknowledging and accepting the patient’s use of their own skills and competencies (17) .

Patients want a health care provider who gives information, but is also caring and sensitive to their needs so that they feel cared for as people not as an illness (18) . People need orientations and conditions congruent with their expectations and health care beliefs. Satisfaction with care is not clearly related to the “objective” outcome of that care (19) . Satisfied patients are more likely to co-operate with their health care providers by giving information and complying with suggested therapy (19) . Doctors and patients have been observed to live in different perceptual worlds, not necessarily sharing an understanding of the problem (20) .

Specialist Continence Nurses

The past 20 years has seen a huge expansion in the numbers and scope of practice of specialist nurses in Western health care (21) . Many nurse specialists cater for patients with chronic conditions, enabling a wider more holistic approach to care which is well-suited to a nursing philosophy (22) . It is seen as important that such specialists do not become over-technical or mini-doctors and lose touch with the human art of caring (23) . Some have seen this as a positive opportunity to change the focus and delivery of care away from a medical model, towards a more patient-centered approach. Not only can nurses perform as well as doctors over a range of procedures and problems, but there is growing evidence that specialist nurses can improve patient information, outcomes and satisfaction with care . Enabling patients to cope with symptoms, often chronic, is as valid an end point in nursing as the successful completion of a technical procedure or achieving a "cure".

Shaw et al., in qualitative interviews with recipients of specialist nursing continence advice, have found that the main themes that emerged were the interpersonal and technical skills of the nurse, which together led to effective treatment (24) . An informal friendly approach by nurses with good communication skills relieved patients' embarrassment and anxiety, giving them confidence and trust in the nurse, thus facilitating information exchange and the effectiveness of care. Communication was not too technical, but not patronizing. A friendly rapport was felt to promote compliance, without which treatments cannot be effective.

Re-defining a problem - evidence from a research study

In the present author’s PhD work, a randomized controlled trial compared four groups of people with faecal incontinence, who all received six one-hour education and support sessions, with or without exercises, clinic biofeedback or home biofeedback (25) . There was no difference between the groups on any of the multiple outcome measures, whatever was done 80% were improved. This suggests that the technical aspects of care were less important than the interpersonal relationship, and this was reflected in the patients’ comments. It seems for some patients, breaking down the taboos on talking about their problem was a great relief. Nurses have to find ways of managing embarrassment if they are to help people with problems considered embarrassing. Nurses have been found to have highly sophisticated and subtle skills developed to deal with what they know is potentially or actually embarrassing, threatening, frightening or unfamiliar to patients (15) . The patients in this study almost universally permitted a level of intimacy and talked about taboos. Many commented about the successful management of embarrassment.

Patients were allowed to discuss this taboo topic and commented on not feeling embarrassed, suggesting that the therapists had constructed a situation in which faecal incontinence was not embarrassing: “Being able to talk freely about the problem knowing that the nurse will understand and not be disgusted” (Patient 145). Maybe going through the process of treatment helped people to reappraise their disgust, just as women learn to cope with menstrual blood at an earlier age. Most still had some degree of faecal incontinence, which must still be messy and unpleasant, but many felt that they could live with it.

Lawler has noted that this helping patients to manage their embarrassment is fundamental to helping patients during illness (15) . This comes about by re-defining the situation and making incontinence a legitimate health care problem. By recognizing and managing the patients' vulnerability, maybe patients were enabled to face the problem and cope with it. Benner (7) has described a context of acceptance when the expert nurse is comfortable and familiar with a problem, creating an environment of permission, where normally taboo subjects can be discussed. Instead of the normal and expected social reaction of revulsion and rejection these people were treated as having a legitimate health care problem.

Salter has suggested that patients need three types of support from nurses - emotional, information, and instrumental (practical aid). Acceptance of another individual, despite their inability to conform to society's norms, can give powerful affirmation to a patient. Nurses must "help patients as they try to come to terms with their life" (26) . This intervention allowed this time and space in which to adjust body image and life goals. Maybe the unconditional positive regard and acceptance offered to patients, and the fact that they were not rejected or mocked, and the therapists were not disgusted, enabled people to drop their usual performance and be themselves (27) .

Goffman has proposed the concept of “the wise” as knowledgeable people who know about a stigmatizing condition and the secret life of the stigmatized individual and can offer practical help and sympathy, without the usually needed pretences and face-saving performances. People gain support if they find that others share the same stigma (28) . Having a designated clinic devoted to this symptom gave the message to patients that this was an important problem, there are others with the same problem, and they were being taken seriously: “The realization one is not unique / a freak.  “Great to find this level of knowledge and care about this issue”. Indeed, a patient must have this symptom to attend this clinic; in the context of the clinic faecal incontinence was the norm and people without this symptom were “unacceptable”, and discharged from the clinic.

Patients identify feeling that a nurse has time to spend with them, with a sincere caring attitude is very important during information-sharing. They need to feel supported (29) . An important element of this treatment was possibly simply allowing adequate time for the patients to feel that they had been heard and that someone was really listening to them: “… I really appreciated the time spent with me. Was always relaxed and unhurried which made me feel much better..”.

Part of living with a stigma is learning to pass as normal. Most people with a problem start from a self-centered viewpoint of certainty that everyone must know. Later there is a realistic appreciation that this is not so (28) . The clinic enabled people to discuss their incontinence at ease, with no need to disguise the problem, and many appreciated this. A relationship obliges the exchange of an appropriate amount of intimate facts as evidence of trust and mutual commitment (28) . Once disclosure of the worst about oneself is over, adaptation can commence.

It is very reinforcing to be able to admit to a problem and not be rejected. "…when you're talking about bowel movements and ….soiling your underwear…You can bond. It's very bonding when you have something like that in common and you can actually admit it" (30) . There is a human need for true understanding and a sense of alienation from a body which does not work as one would wish (30) . Achieving or maintaining a sense of control in chronic illness is necessary to self-esteem and quality of life (30) . Possibly taking positive action and being heard, not rejected, achieved this for some of these patients.

Getting better

Changing self-efficacy by building up a patient’s confidence and self-worth is one of the most important components of any behavioral healthcare intervention (31) . Self-efficacy “is promoted whenever an intervention is designed to provide the patient with the confidence that she / he can cope or behave in such a way the she / he can manage the disease or its treatment” (31) . There are two major components to this: interaction self-efficacy empowers the patient to be more involved in decision-making; management self-efficacy results from the patient acquiring self-management skills, and believing in them. Positive outcome expectancy alone, and information alone, are not as beneficial for health outcomes as when combined with such specific skills; patients need strategies to respond appropriately to information (31) .

Treatment must help people to change their horizons and re-define health. Understanding gained about the condition will help people to re-construe  incontinence, with a biological explanation for their symptoms. Many seem to see it as a condition for which they are somehow to blame, to feel guilty about, that they could control if only they tried harder or were a better person. Maybe talking about the problem helps people to “own” their body and take responsibility for the problem. This was not something that is happening to my body as separate from myself, but something that is happening to myself, “my incontinence”. We use instruments of social control to potty train our infants – to use the pot is “good” and makes the parent pleased; to be incontinent is “naughty” “baby-like” and “dirty” and we use that sense of shame and embarrassment to socialize the infant and produce the desired behavior.

Many conditions and diseases, such as incontinence, are chronic or recurrent in nature. These chronic conditions account for a large part of the health care budget. The UK government has proposed the concept of the "expert patient" to address this issue. The emphasis is changed to teaching self-management, rather than the traditional paternalistic hospital-based "illness service". The hospital becomes only a part of the patient’s health care, with an interactive relationship between the professional and patient tailored to the individual’s ability and willingness to take responsibility for their own health care (32) .

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