Faecal Incontinence: A Review of Definition, Quality of Life and Psychosocial effects in the Elderly
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Faecal Incontinence: A Review of Definition, Quality of Life and Psychosocial effects in the Elderly
In this literature review, the writer proposes to discuss the need for a universal definition for faecal incontinence (FI) and will seek to discuss the psychological impact faecal incontinence has on patients. This literature review will also consider whether such a definition will assist nurses in their initial assessment, treatment and day to day care with the view of improving the quality of life of such patients.
Faecal incontinence is a common condition of the elderly which causes shame and embarrassment and this can lead to isolation from family and friends who find it difficult to cope with the situation. The failure to control stool not only causes psychological stress to individuals but to an ill patient it can also be a great source of infection thus adding and leading to complications.
Matibag et al (2003) defines FI as the loss of normal control of the bowels, which leads to stool leaking from the rectum at unexpected times. A similar view is held by Macmillan et al (2004) who reports that FI is a loss of voluntary control of the passage of liquid or solid stool. On the other hand, Faltin et al (2001) purports that FI is anal or complete incontinence when gas leakage is included and faecal or partial incontinence when leakage of stool is considered. The writer is of the opinion that it should include constipation, overflow, gas, duration, frequency and amount. This, whilst not comprehensive, would provide a much clearer basic guideline to practicing nurses.
Following recent rudimentary trial(s), the General Health Questionnaire offered a simple description of Urinary Incontinence along with guidelines and methods of assessing patients suffering from this condition. This was done with a view of developing a holistic approach to treatment. However, it appears no such trials or questionnaire has been undertaken with regards to faecal incontinence, thus leading to great inconsistencies when dealing with such patients, mainly the elderly.
Levene (2003) and Batty (2003) have pointed out, even though the
National Service Framework for Older People sets out clear guidelines for the way in which elderly patients should be cared for, there are still considerable inconsistencies…and the way that NSF’s provisions are implemented and enforced.
Cohen (2003) argues that there is a need for society as a whole to restructure the way in which it perceives elderly people. He strongly believes this is the only way that the elderly will be able to assume a meaningful and productive role in society as they are generally perceived to be problematic with very little ability to contribute to their communities.
Due to the nature of this condition, patients, especially the elderly, feel isolated and find it extremely difficult to fit into their social community where they are already seen and considered as a generic group.
In addition, it is important to remember that cultural factors will also come into play. It is sometimes assumed by those in the mainstream community that particular minority groups will take care of their loved ones within their local subculture. This is a misconception in itself. In fact, such a perception is misleading as many are deprived of care and also do not have access to nurses who are familiar with their own culture and understand their particular requirements.
For the purpose of this research, the writer utilised a number of databases to procure current literature for this review, including Medline, CINAHL, PubMed and InterNurse, accessed on-line through the Athens website. A manual search was also undertaken.
The literature sought to identify as many research articles as possible that had examined the definition and epidemiology of faecal incontinence and its effect on the patients’ quality of life. The search was conducted between 1990 and 2007.
The key words and phrases used when searching the databases were: fecal or faecal incontinence, quality of life, psychological aspects, epidemiology, elderly, dependency and incontinence generally. The search yielded 3555 records which was too broad. This was scaled down by using limiters; full text only and research articles resulted in 200 citations. This was further limited by age which resulted in 98 citations which were potentially relevant.
The inclusion criteria were limited to English written papers, and articles providing information on faecal incontinence. Papers were included if they had the term(s) searched for and if they were of particular interest to the writer. The writer felt that articles which focused on faecal impaction along with papers which could only be retrieved by pay per view methods and those which provided abstracts only were excluded.
Due to restrictions and availability, 20 articles were obtained and reviewed.
Over the years, the physical and psychological aspect of patients suffering with Urinary Incontinence has shown vast improvements. However, the development of a clear universal definition for identifying what constitutes FI has been very slow. Although academics argue that there is a need for a much clearer definition or description, they are still not able to come to a general consensus as to whether such a definition should include psychological as well as physical conditions of such patients. Still yet, a few appear to be of the opinion that this definition should include the above as well as the socio and economic impact on the patient’s quality of life.
As such concerns are still being addressed; the difficulties nurses face on a daily basis in the early assessment of patients, still remains unresolved.
The Department of Health (1999) states that incontinence is a treatable condition but goes on to add that in practice nurses implement a conservative care plan focused on managing the problem rather than treating the underlying cause (DoH 1999).
It is observed that one of the main causal factors for this is the lack of a universal definition and that there is no uniformity in the treatment of these patients. It should also be noted that funding plays a crucial part for any such future research. In the meantime, the cost of treatment offered varies according to post code.
From studies reviewed, it is observed that FI can and does have a negative impact on patients, especially the elderly. Such effect has considerable psychosocial consequences, which include stress and depression with the latter impacting severely on the patient’s quality of life (Rothbarth et al 2001).
In order to fully understand the impact of FI among elderly patients, this review will focus on the following: the description and epidemiology of faecal incontinence and the quality of life of the elderly suffering from such a condition.
Faecal incontinence can be defined as the loss of anal sphincter control or the inability to postpone defecation to a more appropriate time and place, resulting in unwanted release of liquid or solid stool or gas (Matibag et al 2003).
The studies reviewed show that there are several descriptive statements of faecal incontinence with a lot being dependent on the duration, type, amount of leakage, urge and passive faecal incontinence (Matibag et al 2003).
The Rome Multinational Working Team devised a definition for faecal incontinence as “recurrent, uncontrolled passage of faecal material in an individual (with a developmental age of at least 4 years) who has no evidence of neurologic or structural aetiologies”. This definition excludes flatus incontinence and faecal incontinence of an organic nature. This led Macmillan et al (2004) to conclude that the above description is not useful for cross-sectional studies of prevalence. Macmillan also showed that this definition which was used by Thompson et al (2002) in their study reflected a low prevalence rate which is not a true reflection of the prevalence of faecal incontinence. Macmillan et al (2004) posits that a sensitive definition of faecal incontinence is needed that does not merely investigate the need for tertiary services. Such a definition should take into account assessment, severity, frequency and alteration of quality of life.
2.1 Epidemiology of FI
Of the literature examined, different prevalence rates emerged. Population based studies gave prevalence rates ranging from 0.5% to 50%. Johansen and Lafferty (1996) reveal that among those seen in primary care, the rate was 13.7%, thus highlighting the underestimation of faecal incontinence. Walter et al (2002) reported that soiling of under garments more than once per month occurred in 21% of men and 14.5% of women. In the United Kingdom 1% of persons with an age greater than 65 suffers from faecal incontinence (Edwards and Jones 2001). Nelson et al (1995) suggested that faecal incontinence affects 2% of the general population. However, a Chan et al (2002) show there was a prevalence of 12% in urogynaecology clinics. An Australian study revealed that the overall prevalence rate was 15%, with men scoring 29% and women 11% (Lam et al 1999); this shows that the prevalence rate is higher in men than women. However, Nakanishi et al (1999) reported a prevalence rate in Japan of 8.7% in men and 6.6% in women over the age of 65 years. This correlates to a worldwide incontinence rate of about 5% (Nakanishi et al). Having reviewed these studies, it appears that women are more willing to report symptoms of faecal incontinence than their counterparts although they are just as likely to suffer from the condition. It is fair to say that failing to do this will, and does have adverse effect on the level of care such patients will receive. The main cause for concern is that nurses will not be able to have an accurate initial assessment of their patients and thus unable to administer the appropriate treatment and education needed.
In recent years, the published literature has attempted to quantify the prevalence of faecal incontinence and the impact it has on the elderly.
Although these studies appear to have been appropriately undertaken, the writer is most concerned that the findings may be flawed as a result of bias, patients’ fear of being identified and the manner in which they were carried out. It is observed that three of the study findings did not correlate and as a result, the accuracy of the prevalence rate of faecal incontinence is questionable. This is largely due to the fact that nurses were working from their own perception of what constitutes faecal incontinence and thus the care to the patients varied tremendously. The results of these studies could not pooled in a formal way because of lack of homogeneity in population, definition and data collection methods. On the other hand, those that could be said to have been appropriately carried out, showed that the prevalence rate for faecal incontinence as 11-15 per cent. This confirms the general consensus among the nursing profession that faecal incontinence is much higher than perceived. This seems to be supported by the study undertaken by Lam et al who was the only one to use a validated tool in their data collection. Such findings affirm that a lack of consistently used validated tool for the assessment of faecal incontinence impedes the ability to accurately investigate prevalence.
A similar finding is seen in a cross-sectional study, combined with comparative and correlative methods undertaken by Stenzelius, Westergren and Hallberg (2005). They found that Faecal incontinence is highly prevalent amongst the elderly, but that the scale of the problem is not considered big enough or there is a general belief that help cannot be provided as few seem to seek such help.
Previous studies indicates that the quality of life of patients with faecal incontinence is worse than that of a control group (Perry et al 2002, Bai et al 2002, MacLennan et al 2000, Wexner et al 2002). It is crucial to measure patient’s health as this is known to have an effect on their quality of life (Fitzpatrick et al 1992). It is also important to use QOL questionnaires based on reliable and valid tools which can assess incontinence by using a formal scoring system. Matibag et al reports that the Cleveland Clinic and St Marks Hospital continence scoring systems are improvements over previous systems as they include a global assessment on incontinence of stool and flatus, taking into account the frequency of losses, the need to use pads and the effect of FI on lifestyle. These assessment tools also takes into account the ability to defer defecation for over 15 minutes and the use of constipating medications (Matibag et al 2003) The most important drawback of the available scoring systems is the inability to assess passive incontinence in any detail (Matibag 2003). Passive incontinence is not normally noted until sometime after leakage and the volume of the leakage is almost impossible to quantify (Malouf et al. 2001). Malouf et al also asserts that an additional drawback to this system is that the same scores can be obtained from very different patients, which does not always equate to similar clinical experiences or levels of incontinence.
A similar view is held by Madoff et al (1992) who suggests that taking the above points into consideration might improve the validity of the Cleveland Clinic Incontinence Score.
The varying degree of incontinence between liquid and solid stool does not necessarily reflect or measure the social consequences of incontinence. Outcome should be measured objectively against the patient’s own assessment of faecal incontinence’s impact on his or her lifestyle, for example, on personal loving relationships and social relationships.
Matibag reports that there are many generic, well validated QoL instruments, but only one pertinent to faecal incontinence (Rockwood et al 2000). This tool comprises four scales taking into account lifestyle, depression and self perception, coping, behaviour and embarrassment. He asserts that health outcome assessment should take into account disease specific and generic quality of life tools.
Stenzelius et al conducted a cross sectional study combined with comparative and correlative methods (Kazdin 1998) into the bowel habits of the elderly, over 75 years of age reporting faecal incontinence in relation to help seeking, dependency and quality of life. The sample size consisted of 284 persons, 142 women and 206 men, aged 75 – 96, mean 82.0, SD = 5.20. The study participants completed the questionnaire if they stated they had problems with faecal incontinence in the last three months prior to completing the questionnaire (Stenzelius et al 2005). The study sample drawn was from a postal questionnaire which was distributed to 8500 people of 75 years and above. The study sample was divided into two groups, independent and dependent based on the level of help needed with activities of daily living. The independent participants were sent a postal questionnaire with one reminder and appointments made to visit with the dependent patients in their homes (Stenzelius et al 2005).
The interview was structured and consisted of the same questions as in the postal survey. Stenzelius et al adopted this method as it assisted them in compilation of their study. The statistics revealed that the ratio between the youngest age group and the oldest varied with the greater need, naturally being those who are dependent.
In addition, Stenzelius et al used an accompanying questionnaire to support their findings. The purpose of which was to assess patient’s bowel functions, stool consistency and related symptom. The questionnaire used was largely influenced by the St Marks Hospital (UK) and an unidentified hospital in Sweden. The questionnaire was based on the Likert Scale with responses being used to measure patient’s quality of life. The average age of the study participants was 82 years. Half of these study participants stated that they experienced handicaps in life relating to faecal incontinence issues (Stenzelius et al 2005). It was interesting to note that women experienced faecal incontinence symptoms far longer than men with many complaining of ‘redness of the skin or wounds in the genital area’.
The method of data collection used by Stenzelius et al was that of a questionnaire and interview. It is known that postal questionnaire seeks to reduce generalisability of findings and they tend to have a lower response rate than interviews (Barker 1996, Grey 1998). Another limitation of written responses to questionnaires is that honesty might be influenced by fear that answers could be traced back to them (Parahoo & McKenna 1999). Despite these weaknesses, the information collected seem to have addressed and satisfied the purpose for which Stenzelius et al intended. This can be substantiated by the richness that would follow during the interview process (Polit & Hungler 1997) as this method clearly gave little or no room for mis-information or misunderstandings.
Questionnaires and structured interviews are reported to be the main methods of data collection in quantitative research Parahoo & McKenna (1999). According to Polit and Hungler (1997) interviews have a better and higher response rate than questionnaires. Questionnaires also allow collection of data from larger geographical areas and economical to use.
Whilst it would appear that that qualitative and quantitative research methods are not reciprocal, in practice they can be interlinked (Porter 1999) and researchers sometimes use both styles to conduct their research. Carter (1996) believes that both types can make a valuable contribution when researching significant trends in nursing.
Faecal Incontinence is associated with high levels of anxiety and depression in older people (Edwards & Jones 2001) but the psychological effect of resolving or reducing the burden has not been explored.
Faecal Incontinence sufferers are aware of the stigma attached to the condition and many have extensive and elaborate plans before attempting a social outing as well as “keeping the secret of FI” (Peden-McAlpine & Bliss, 2002).
A qualitative study, using a semi structured interview format was carried out by Collings and Norton (2004) into psychosexual and psychological effects on women suffering Faecal incontinence.
In this study the participants they felt anger, shame, embarrassment, isolation, low self esteem amongst others as a result of faecal incontinence. This, of course, is in addition to the physical discomfort and the inconvenience faced in wearing continence aids. Many, if not all have chosen to wear ill fitting clothing as a means of disguise. They seek to address these issues by either denial or becoming familiar with their surroundings and the use of medical aids and medications.
It is an unspoken universal language that individuals are taught from childhood to manage their bowel movements. Failure to do so would be considered a taboo or an illness. The psychological effect of this does not change among the elderly and the inability to do this, creates a sense of guilt, fear and self loathing. Unfortunately, society is not very kind in helping patients to address or live with such issues. As a result, patients are unwilling to disclose their problems because of fear of being humiliated and stigmatised.
Koch et al (2002) conducted a community based participatory research programme in Australia, to investigate what the effects of being excluded because of faecal incontinence. The study was conducted over a period of five years and the participants were women with multiple sclerosis. This experience enabled the women to talk openly about sex and incontinence, which was previously taboo.
A similar study was replicated in the UK by Chelvanayagam and Norton (2000) who ran two focus groups in order to develop a research questionnaire, ‘Effects of bowel leakage’. They found that for most of the study participants, this was the first opportunity they had of speaking openly about the effect faecal incontinence had on their lifestyle (Chelvanayagam and Norton 2000). The study participants also felt that hearing how their peers coped with stress and potential humiliation of faecal incontinence mutually supportive (Chelvanayagam and Norton 2000). As with the Australian women living with MS, access to toilets and sexual relationships were cited as issues of concern. There was however, evidence of how living with FI affected all aspects of their life. Skin care, shopping, food, employment, travel, appearance, and socialising were all given as examples where there were difficulties experienced in daily living (Chelvanayagam and Norton 2000).
There were limitations of the study carried out by Collings and Norton. The study was small and involved a self-selecting and articulate group of women which means that they were unlikely to be a representative sample of women who suffer from faecal incontinence. Be that as it may, Collings and Norton contend that their findings offer a useful and largely unexplored insight into the range of experience and some of the strategies used to manage these symptoms.
Norton (2004) conducted out a qualitative study on living with Urinary Incontinence and studied the attitudes of health care workers and perceived barriers toward the care of nursing home residents with urinary incontinence. It is felt that such a study can be reproduced in persons with faecal incontinence to obtain a better understanding of the impact faecal incontinence has on all aspects of living. Such a study should be done without prejudice or bias; for example that the issues surrounding faecal incontinence and urinary incontinence are identical.
Deutekom et al (2005) researched the impact of faecal incontinence severity on health domains. The study was done as a part of a large cohort study between 2001 and 2004. A questionnaire was used which addressed mobility, self care, usual activities, pain and discomfort and anxiety and depression. Each area had three levels: no problems, some/moderate problems and extreme problems/unable to (Deutekom et al 2005). The responses were converted into a summary utility measure, expressing valuation of health state; this ranged from -0.594, worst imaginable health state to 1, optimal health state (Deutekom et al 2005). The results revealed that the severity of incontinence was linked significantly anxiety and depression, pain and discomfort, and in all areas, study participants reported more problems than members of the same age in a reference population (Deutekom et al 2005).
There were a number of potential limitations to this study; the researcher’s exclusion criteria excluded some groups of patient suffering from faecal incontinence. Their study sought patients with faecal incontinence existing 6 months and eight years on average; therefore their results cannot be said to be generalised to al patients suffering faecal incontinence.
Deutekom et al (2005) reports that ninety per cent of the participants were female and that the imbalance between genders was not due to a form of selection bias but is inherent to the condition of faecal incontinence. The limited number of men in this study prevented Deutekom et al to make meaningful comparisons between genders.
The study population was given a generic questionnaire to complete. Such questionnaires have been shown to contain nonspecific items and scoring systems, applicable to various health states (Kelleher 2000). Another criticism of this mode of questionnaire is that it appears to lack sensitivity in women with non life threatening conditions such as faecal incontinence (Keller, C 2000).
It has been alluded to that the continence scoring system which exists has not received universal uptake (Byrne et al 2002). In their study Deutekom et al used a tool developed by Vaizey et al. This scale consists of three items about the type (gas, fluid, solid) and frequency of incontinence which is scored from 0 to 4. Four additional items addressing social invalidation, the need to wear use a pad or plug, the use of constipating medication and the presence of urge incontinence. The total score using the Vaizey method range from 0, which is complete continence to 24, complete incontinence (Vaizey et al 1999).
Byrne et al questioned the value of clinical scales, as they are developed by clinicians and is of a quantitative nature, whereas patients tend o place more emphasis of social limitations and quality of life caused by the incontinence. However, Deutekom et al contends that quantitative measurements are a good reflection of the consequences of faecal incontinence on the health of patients.
Faecal incontinence is a physically and psychologically disabling condition which impacts heavily of quality of life (Rothbart et al 2001). This can lead to isolation, alienation from family and friends, loss of independence and self esteem which could account for the high levels of anxiety and depression Deutekom et al 2005).
Deutekom et al should be commended for conducting this research with a large patient cohort as it examines the relationship between clinical severity and health outcomes.
Deutekom’s study is comparable with the study compiled by Hunskaar and Sandvik (1993) into urinary incontinence. Hunskaar and Sandvik found that urinary incontinence had a negative psychosocial impact that increased with severity.
3.0 Nursing Implications
In 2004, Bliss et al conducted a research on faecal incontinence and asserts that there is an imminent need for international consensus on terminology used in research as well as practice as without a common vocabulary it is impossible to replicate methods, compare and interpret results and evaluate conclusions across studies. Norton et al (2002), Whitehead et al 1999 have made a start towards common language in the field of continence and gastrointestinal nursing. This is important as nurses need to define and integrate commonly used terms in continence nursing into a shared language. Bliss asserts that standard terms and definitions of stool characteristics, difficulty or ease of defecation, gastrointestinal sensations, and nursing interventions need to be established and validated.
An abnormal bowel function has enormous psychological implications for an individual and the burden of carrying such a secret has been acknowledged. Patients are often reluctant to discuss their symptoms with anyone, including a professional working in this field; it is therefore imperative that nurses are approachable and able to discuss this subject. The nurse should be knowledgeable on the subject and be able to empower the patient, should compliance be necessary (Butcher 2004). Nurses should not underestimate the power of simple supportive interaction with their patients.
In reviewing the studies, it came to light that none of the articles were randomized controlled trials. Randomized controlled trials are thought of as the most valid method for determining efficacy because biases associated with other designs can be avoided (Polit, Beck and Hungler (2001). It has been suggested that such a system’s usefulness is limited to policy makers in health care because of lack of generalisability of results (Polit, Beck and Hungler 2001). Most of the studies used postal questionnaires to find out the prevalence of FI; this type of survey has its own limitations.
Barker (1996) contends that the self-selective nature of responses compels the researcher to question any final conclusions. Grey (1998) highlights the problem with accuracy which is inherent in all forms of verbal or written self reports, whereby the subject might respond in a way that makes a favourable impression (the Hawthorne effect), and acknowledges the lack of control a researcher has in this regard. Because there is no way to know whether a subject is telling the truth or answering in a socially desirable way Grey (1998) suggests that the researcher is forced to assume that the subject is telling the truth. Measures that assure anonymity and confidentiality may also contribute to the quality of responses. Barker (1996) posits that the layout of self-report questionnaires will affect the response rate, and that all self-report questionnaires should be accompanied by a clearly written, friendly letter, providing a general explanation of the purpose of the research, supported by a stamped, addressed envelope for return to the researcher.
Much of this research was done using material based on evidence in the UK, with comparative reference made to a study carried out in the USA, Japan and Sweden.
Due to paucity in this area of research, more investigation needs to be conducted to enhance the nursing knowledge and research in relation to treatment and care of patients with faecal incontinence. The development and implementation of a recognised international definition and terminology of faecal incontinence is needed.
Whilst conducting this literature review, it was found that there is a dearth of knowledge about urinary incontinence and attempts have been made to deal with double incontinence. The writer feels that there should be intensive collaboration and synergy between researching faecal incontinence and urinary incontinence to bridge the gap between the two disciplines. It became apparent that a universal definition of FI could help to improve initial assessment and treatment for patients suffering from this condition. Studies carried out by Perry et al 2002, and Wexner et al 2002 would suggest that by adopting a similar approach to that of urinary incontinence could provide a basis for better treatment. Consequently, a universal definition could be used by nurses effectively to reduce patients' problems associated with faecal incontinence and other chronic bowel disorders, provided they receive special training in the care of these conditions.
There should also be a tool specifically developed for assessment of faecal incontinence which incorporates a psychological assessment. The definition should take into account the lived experience of faecal incontinence, encompassing attitudes and cultural beliefs and the role and effect of faecal incontinence as it relates to anxiety and depression.
It would appear that cost, time and patient’s confidentiality also affects academics ability to carry out additional research and findings in this area, thus impeding progress. However, in order to provide quality care and to aim for better service to patients there is a need to ensure uniformity and application of such care would be of great importance and effect. By identifying such weaknesses, future implementations will consider this medium as a means of seeking to bring about a working definition even if there is no “formal” one in the UK.
There is a need for additional research to support patient outcome as very little is known about the full effect faecal incontinence has on the individual and their quality of life.
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