Faecal incontinence (FI) is described as the involuntary loss of stool, which can be of either solid or liquid consistency (Menees et al, 2018). The way in which people experience FI varies. For instance, a person might have urge incontinence or the inability to defer defaecation in time to reach the toilet. Conversely, passive soiling can occur, where the person passes stool without being consciously aware of having done so. Faecal leakage can occur as a result of not fully emptying the bowel, that is, where the patient has passed stool, but the rectum has not emptied completely.
There are multiple reasons why a person might develop FI. These can include structural damage to the anal sphincters due to surgical intervention or childbirth. FI that is described as functional is where there is an absence of structural abnormality, but the person experiences incontinence due to problems such as not being able to find a toilet in time or not being able to clean themselves properly following defaecation (Musa et al, 2019). There may be issues with the consistency of the stool or other underlying contributory factors, such as irritable bowel syndrome (IBS), which makes it difficult for the person to defer defaecation.
FI can occur at any age, although it has been found that there is a greater prevalence in older people (Musa et al, 2019), with 55% older people experiencing FI compared with 18% people in the general population (Alavi et al, 2015). The prevalence of FI in the community is difficult to quantify, and statistics vary (Sharma et al, 2016). One of the reasons for this is that FI is an under-reported problem (National Institute for Health and Care Excellence (NICE), 2007). People are reluctant to divulge this information, as it is still largely a taboo topic (Collins and Norton, 2013). The emotional and psychological impact of this condition on the person can be complex, may be interconnected with childhood experiences and can be linked to deep emotional trauma (Stern, 2007).
Nurses and health workers who care for people with FI in a variety of settings can themselves be affected emotionally and experience distress in relation to the process of caring (Ostaszkiewicz, 2018). Sometimes, health workers become involved in assisting with aspects of personal care following an episode of FI. The emotional impact of this on the health worker may initiate a response to the patient that is not always therapeutic (Ostaszkiewicz, 2018). This, in turn, generates feelings of guilt and shame in the patient, which can lead to a breakdown in the therapeutic relationship.
The aim of this article is to explore some of these issues. It is hoped that by improving understanding of the multifaceted issues that affect both patients and caregivers surrounding the subject of FI, care can become more mindful and supportive.
Quality of life
FI is a distressing symptom at any life stage (Butcher, 2019). It is associated with anxiety, altered body image, reduced confidence and low self-esteem (Collins and Norton, 2013; Ness, 2018). Social isolation can be a problem for those living with FI because the person may be reticent to go out in public (Bartlett et al, 2009) for fear of losing control of bowel function. Such lifestyle restrictions can result in a diminished quality of life.
Continence and competence
Bowel continence can be connected with childhood development and be integral to a person's sense of competence. During toilet training, children are often rewarded for their ability to hold on or defer defaecation and to pass stools in the toilet or potty. From a very young age, it is expected that human beings master the ability to control their bowel function.
Deferring defaecation is something that most of us take for granted as adults. Most people have the capacity to recognise the need to pass stools and can normally wait until an appropriate time to do so. Hence, the experience of losing that function that was an early marker of childhood development can influence the person with incontinence, leading to feelings of failure, hopelessness and incompetence.
Psychodynamic theory
The roots of bowel continence are grounded in psychoanalytical theory. Freud (1908), in his seminal work Theory of psychosexual development, described the ‘anal stage’ of development as being a time when children learn how to control the expulsion of bodily waste via toilet training. The impact of parental guidance throughout this stage is particularly important. Freud contended that parents who encouraged and praised efforts to use the toilet or potty instilled in the child a sense of accomplishment, pride and power. It was considered that such children would carry this sense of competence, independence and capability into adulthood. Contrary to this, parents who project a harsher, stricter attitude to the child, using punishment or derision towards a child who soiled him/herself, could have a negative impact. The child would experience feelings of guilt and shame if they were not able to defaecate in the appropriate place at the appropriate time.
It is theorised that these experiences can have a significant effect on the unconscious and influence the way people feel about themselves in later life. Erikson, a psychoanalyst and humanitarian, echoed some of Freud's views in his theory on the stages of psychosocial development. Erikson (1950) contended that, in early childhood (between the ages of 1 and 3), the parental approach to toilet training plays a significant role in the child's experiences of shame, doubt and autonomy.
The significance of this for individuals with FI is twofold. First, an episode of incontinence may spark unconscious feelings of being dirty or degenerate, which affects a person's confidence and sense of self. Second, it may ignite fears of admonishment or provoke a response of disgust or revulsion in others. This, in turn, can lead to sense of self-disgust and a fear of rejection (Inspector and Burns, 2016).
Stern (2007:67) maintained that there is a ‘pervasive disapproval of incontinence’ and pointed out that the terminology itself is associated with a lack of control. For example, phrases such as ‘verbally incontinent’ refers negatively to someone who is unable to, but should, keep quiet. Negative experiences during toilet training can induce feelings of guilt and shame. Diem-Wille (2014) explained that some people have had painful and humiliating experiences during this stage of their lives, including experiences of being mocked, criticised, physically punished for making a mess or physically restrained until they were able to perform appropriately. The adult experience of shame in FI in a person who has had an adverse history can give rise to the ‘ultimate injury to an already weakened sense of self’ (Knight, 2017:3). This may lead to loss of identity and a sense of incompetence.
Disgust and revulsion
It is important to understand the dynamics of the relationship between the caregiver (nurse or health support worker) and the patient with FI. In order to do this, one must attempt to acknowledge the feelings and thoughts experienced by the care worker when assisting with aspects of continence care.
Nurses are expected to be professional, non-judgmental, caring and supportive to patients. The Nursing and Midwifery Council (NMC)'s code (NMC, 2018) outlines a set of professional standards of behaviour that nurses must abide by in order to remain registered in the profession. Among these are expectations to uphold the dignity of others and treat them with respect, compassion and kindness. Additionally, nurses are advised not to express personal beliefs in an inappropriate manner.
Pioneering research identified that nurses were constantly exposed to situations that were upsetting, unpleasant and, at times, repugnant (Menzies, 1960). In response, they would implement strategies that included evasion and circumvention of the issues. These findings were similarly demonstrated by Ostaszkiewicz (2018), who suggested that nurses and care workers are continually exposed to situations that evoke strong emotional responses, which might include compassion and pity, but conversely, fear, disgust and revulsion. These contradictory feelings can create a dissonance in the caregiver, whereby they must balance negative emotions with professional duty. Hence, it is suggested that nurses are socialised into maintaining a sense of self-control that can lead to denial of their own sense of personhood and humanity. Nurses might emotionally detach themselves from the patient, creating a professional distance that is self-protective. Ostaszkiewicz (2018) asserted that feelings of disgust are interwoven with fear of contamination, which induces a response to protect the self and maintain a safe distance. This distance may take the form of not just a physical barrier but a psychological distance in the form of a detached professional quality, which can sometimes make patients feel emotionally isolated.
Kaiser et al (2018) discussed nurses' attempts to avoid being overwhelmed by feelings of disgust by working faster and systematically, suppressing their feelings. Muggleton et al (2015) claimed that nurses did not feel comfortable to acknowledge or share such feelings. This is most likely a reflection of their understanding of professional duty and expectations of what is means to be a nurse. Furthermore, the notion of disgust is associated with judgment (Kaiser et al, 2019), which is disapproved as a quality in the nurse.
Courtesy stigma
In his seminal work, sociologist Erving Goffman (1963) first described a phenomenon whereby society has diminished respect for someone purely because of their association with a stigmatised person. He referred to this as courtesy stigma. This is sometimes attributed to people with mental health conditions, racist behaviours, strong political beliefs or disease (Tyler and Slater, 2018), where a socially undesirable trait in one person is extended as a stigma to family or close associates.
In this context, Ostaszkiewicz et al (2016) contended that the self-identity of care workers can be substantially affected by negativity associated with their job role. Caring for a person who has FI involves deeply personal care, which crosses familiar social boundaries. The act of assisting a person in the toilet, changing soiled continence products, changing bed linen, helping someone shower or cleaning the person's skin are part of a role that is not typically sought after or desired by mainstream society. The authors suggested that public perception of their work can be damaging to a care worker's sense of self-worth (Ostaszkiewicz et al, 2016).
When the conflict for nurses is considered—upholding the NMC's principles of dignity, respect and compassion, while simultaneously concealing their own aversion to carrying out certain dirty tasks—the thought that society might feel contempt or disdain for their position is an added emotional burden. To overcome the emotional impact of this and do their job well, nurses and care workers must use resilience, but what this actually translates to in practice can differ among individuals.
In their study involving care workers in long-term facilities, Ostaszkiewicz et al (2016) established that in order to transcend the emotional labour involved in caring for a person who requires regular continence care, staff adopted different coping mechanisms. Some of these included disassociating or distancing themselves physically, through various forms of personal protective equipment (PPE) and emotionally detaching through developing ritualistic practices within their work. Some staff expressed an attitude of ‘blame’ towards some patients with incontinence, asserting that their actions were deliberate or ‘attention seeking’. Of importance, staff felt the need to not only cope but to seen as coping.
Shame
While disgust is connected with fear of contamination by something outside of oneself, shame is the reflection of a belief that the self is the contaminant (Giner-Sorolla and Espinosa, 2011). The person with incontinence may hold a belief that they are sullied or unclean, not just physically but as a reflection of their own personhood or sense of self. Feelings of guilt and shame are an outcome of such a belief (Nussbaum, 2004).
Haslam (2012) contended that women in particular have anxieties about their bowel habits. Excretion is considered to be more hidden, as it is not compatible with a sense of femininity.
In both genders, however, a sense of shame can lead to attempts to conceal episodes of FI. These actions may be driven by a fear that the excreta may evoke disgust in others and the sense of guilt for having violated an important social norm (Giner-Sorolla and Espinosa, 2011). The person, already anxious about the situation, may perceive that the caregiver is disgusted or repulsed by the episode.
Ostaszkiewicz et al (2016) stated that feelings of shame are more likely to be experienced by people who have a history of sexual abuse or trauma. Emmanuel (2017) added that adverse childhood events, abuse and trauma can negatively correlate with functional bowel disorders that lead to FI. It was found that close to half the population of patients who attended a tertiary care setting for a functional bowel disorder had a history of abuse (Emmanuel, 2017).
A fear of chastisement can also be experienced by patients who experience FI (Ostaszkiewicz et al, 2016). The fear may be generated by past experiences, even as far back as their childhood experience of toilet training. Unfortunately, fear of reproach may not be unfounded. Some caregivers do respond with admonishing behaviour at times, and this response may be triggered by their own learned behaviours, that is, their experience of childhood chastisement for having an accident.
Implications for practice
Nurses need to consider not only the physical assistance that can be provided to a patient with FI but also the emotional support that should be offered. It is important that a therapeutic relationship is built with the patient and that this is based on principles of person-centred care (Simrén et al, 2017). Giving patients the opportunity to discuss their anxieties about their symptoms will help them to feel reassured, be less prone to anxiety and help them to develop coping mechanisms (Inspector and Burns, 2016).
It has been recognised that this is not easy, due to the emotional reactions experienced by the nurse or caregiver. It has been acknowledged that a way of coping with distressing situations in the workplace is for nurses to protect themselves emotionally by detaching and reducing their sensitivity to situations (Chen and Hsu, 2015). However, this is not helpful to the patient. Denying one's own emotions as a nurse contributes to dehumanising the self and leads to deviation from person-centred care, where the patient is treated as a task or duty rather than as a person.
Unfortunately, nurses are not always aware of the impact of their approach on patients. Chen and Hsu's (2015) research revealed that there is a discrepancy between what patients valued as good nursing traits and what nurses considered to be the ideal. Traits favoured by patients tended to be the human qualities, such as patience, consideration and interpersonal communication; these were considered by patients to be deficient in nursing care. Conversely, nurses considered that clinical nursing skills were important. Nurses who practise self-awareness through reflection may be better able to understand their own attributes and may be more likely to move towards meeting the true needs of patients.
Morin (2011) asserted that there is a difference between being conscious of one's actions and environment and being self-aware. It is theorised that a person becomes self-aware through reflecting on an experience and how it feels to the self.
It is important that nurses are able to be mindful of not only the patient's feelings in relation to guilt, shame and embarrassment when experiencing FI, but also to be aware of their own emotional response and outlook on this. Nurses need to be aware that there is no shame in acknowledging one's own feelings; to do so would be denying one's own personhood and humanity. Experiencing feelings of revulsion and disgust is common, but it is the actions in response to these feelings that are important. The patient's dignity should still be upheld through all communication and action, and feelings of social integrity should be encouraged. Recognising and understanding one's own feelings and humanity may help reduce distancing behaviours and defensive, self-protective reactions.
Conclusion
It is commonly known that discussion of bowel habits is not encouraged in society. The topic still remains a taboo and is rarely discussed, as it is considered distasteful. Having little or no control over these functions can induce feelings of repulsion in the patient, and nurses and care workers may feel like distancing themselves from the person with the symptoms or they may develop ritualised ways of working. Nurses and caregivers who adopt a detached approach and rely on clinical skills alone rather than placing importance on the therapeutic relationship are at risk of making the patient feel increased shame, guilt and isolation regarding their condition. Developing self-awareness through honest reflection on one's own feelings is key to meeting the emotional needs of patients with FI.