Introduction

Anal incontinence (AI) is prevalent within the Australian community and is projected to increase by 2030.1 Damage to the anal sphincter muscle following vaginal delivery is a predominant cause of AI for women, yet the debilitating impact of AI on a person's quality of life has been poorly represented within research literature.2 As a result, there is a paucity of rich, in-depth information that portrays women's experiences of AI following a history of anal sphincter damage. The inability of health professionals to develop a deep understanding as to the impact of AI on a person's quality of life further affects how appropriate healthcare is assessed, planned and delivered.

This review was initiated to discuss the literature that explores and interprets an understanding of women's experience of AI following a history of obstetric anal sphincter injury (OASIS). Given the lifelong impact of AI on quality of life, it was important to discuss literature that addressed not only the primary OASIS for birthing women but also was inclusive of the longitudinal impact for women. The review identifies what is known of women's experiences of AI following a history of OASIS and the subsequent impact on their quality of life. Furthermore, the literature review recognises the impact of AI on women and identifies the knowledge gaps within the current research literature.

An extensive online literature search was undertaken within the medical and nursing databases including the Cumulative Index of Nursing and Allied Health Literature, Scopus, PubMed and Medline. Key search terms included AI, faecal incontinence, anal sphincter injuries, obstetric complications, trauma, obstetric, postnatal care, experiences, women's experience and quality of life. The literature search was further refined through fields that included English language only, literature published between 2000 to 2012 and full-text articles.

Prevalence of AI

AI is not a disease or illness but the involuntary loss of a liquid or solid stool and flatus due to an underlying medical condition or sign of an illness.2,3,4 Bowel continence relies on an intact anal sphincter muscle and damage to the anal sphincter muscle (OASIS) following vaginal delivery is a predominant cause of AI in one- to two-thirds of women.5,6,7 Rasmussen and Ringsberg7 cite that 47% of women were symptomatic of AI following complete disruption to the anal sphincter; Pollack et al.8 concur with these findings, citing 44% of postnatal primiparous women were symptomatic of AI following damage to the anal sphincter. Risk factors associated with OASIS include instrumental delivery, prolonged second stage, infant's birth weight greater than 4000g and persistent occipito-posterior position.5,6,7 Notably, women who have sustained a previous OASIS are seven times more likely to sustain a further OASIS in subsequent deliveries.6 Subsequent cumulative injury, nerve damage and menopause further increase the risk of AI, for women with a history of OASIS.5,6,7

The long-term incidence of AI following vaginal delivery for nulliparous women was reflected on in a study by Pollack et al.8 in which 15% of 242 first-time Swedish mothers sustained an OASIS following vaginal delivery. Obstetric characteristics of participants identified 19 ventouse deliveries and seven episiotomies; however, no discussion was provided as to the relationship between mode of delivery and resultant AI. The findings show OASIS, maternal age and subsequent childbirth were identified as risk factors for AI. At 9 months, 44% of women who had sustained OASIS reported a history of AI. After 5 years, this rate had increased to 53%.8 Women who had a prior history of OASIS and were symptomatic of AI in the post-partum period were eight times more likely to be at risk of persistent AI at 5 years.8 Interestingly, Pollack et al.8 also indicated that 25% of study participants who had no reported sphincter tears reported symptoms of AI at 9 months. After 5 years, the rate of AI had increased to 32%, representing occult damage to the anal sphincter. It was evident that while AI is an increased risk for women with a prior history of OASIS, AI is also a real risk for all women who give birth vaginally.

Pollack et al.8 provided strong evidence of an increased incidence of AI with ageing, with rates of AI at 5 years postnatal reflecting trends within the aged population. AI rates were often reported in more than 50% of aged care residents and have consequently been cited as the most common factor for admission to residential care.4 It is evident within the reviewed research literature that AI is prevalent within the Australian community affecting one million people, half of whom are women.9 An investigation into the trend of AI within Australian residential and community populations reported an increase of AI to 1835340 people by 2030 of whom 1122749 of these people would be women and 253113 in residential aged care.1

Variations in prevalence rates

While research literature revealed the prevalence of AI within the Australian community, there are noted variations in prevalence rates.5,10 Variations are due to differences within the definition of AI, study size, study sample and disclosure of information by participants.5,10 Lack of consensus with the definition of AI and faecal incontinence limit the comparison of research outcomes, resulting in limited awareness of the true impact of AI within the population.5 Lack of awareness keeps AI hidden and further compounds the provision of adequate healthcare provision to meet women's needs, negatively impacting on quality of life.

The standardisation of terminology relating to AI by the International Consultation on Incontinence (ICI) provided a closer step in accurately reporting the prevalence of AI. The current definition of AI is 'any loss of a liquid or solid stool and involuntary loss of flatus'.4 However, upon the review of past prevalence rates of AI, it is evident that a disparity in reporting exists. This is primarily due to the use of definitions that omit flatus incontinence and accounted for the wide variation in prevalence rates with regard to current research.4 This is apparent when reviewing previous reported research by Kamm.11 Reported rates of faecal incontinence in the mid 1980s were notably lower than the reported prevalence in 2001 of 2-9%.11 Milsom et al.4 cited wider variations of AI from 1.5% to 50%, with the highest prevalence being in aged care.

Two Australian studies reflected further differences within reported faecal incontinence with rates between 6.9% and 20.7% in the general population.5,10 Ho et al.'s10 study included 435 men and women with a mean age of 53 years, attending outpatient clinics. While Ho et al.10 noted an increase in the prevalence of faecal incontinence within the outpatient population, notably there was a relationship between 26.3% of women and difficult delivery. However, their results did not discuss what a difficult delivery included nor could a relationship between AI and a history of OASIS be determined. Conversely, Chiarelli et al.'s5 study included 568 women who were at high risk of anal sphincter injury. High risk deliveries included instrumental delivery and the delivery of babies greater than 4000g. Reported rates of faecal incontinence were cited at 6.9% increasing to 24.4% with the inclusion of precursor symptoms of flatus incontinence.5 The higher rates of faecal incontinence within Chiarelli et al.'s5 research supported the general consensus that AI increased with age, multiparity and high risk vaginal delivery. Importantly, while both studies utilised a similar definition of faecal incontinence, disparity within the study population and inclusion of precursor symptoms reflected differences in the reported prevalence of faecal incontinence. Notably, neither Chiarelli et al.5 nor Ho et al.'s10 research provided discussion that included women with a known history of OASIS.

Two Swedish prospective observational studies reflected higher rates of AI within the postnatal population who sustained OASIS.8,12 Fornell et al.12 cited a pronounced increase of flatus incontinence 10 years post-delivery; however, their study only included 82 postnatal women, and their results could not be generalised. A larger study by Pollack et al.8 included 242 postnatal women and reflected an increased rate of AI at 53% within 5 years of delivery. Comparisons between the reported rates of AI within Chiarelli et al.,5 Ho et al.,10 Fornell et al.12 and Pollack et al.'s8 research were limited due to the definition of AI and the study sample. Nevertheless, reported outcomes reinforced AI as a significant issue within society, and the prevalence was notably higher in the postnatal population who sustained OASIS. Anecdotal evidence provided by Continence Nurse Specialists Steel, Coates, Robinson and Tucker (July 2011) within a large northern metropolitan Australian hospital reflected increased trends of AI following OASIS and further supported the need for research that would uncover an in-depth rich understanding of women's experiences of AI and the impact on quality of life.

Overall, these findings suggest that AI is prevalent across the lifespan and not isolated to the elderly population in residential aged care. Women who sustain OASIS are at risk of AI. This risk is increased through subsequent vaginal deliveries and ageing.6 Of concern is the expected increase of AI within the Australian community by 2030, in particular for women.1 Alterations in clinical practice will provide the greatest contribution in improving identification and management of healthcare for those afflicted by AI. The standardisation and use of the ICI definition of AI provides the clinician with consistent reporting as to its prevalence.4 Understanding the true prevalence of AI will assist the clinician in raising awareness of a hidden problem and in turn improve health planning and provision of care.

Barriers in disclosing AI

Continence is defined by the social fabric in which we live and to be incontinent of faeces is socially unacceptable and carries stigmatisation.13 As a child, we adopt the values and beliefs within our community as to the accepted norms of physical bowel control; by adulthood, we assume control of bodily functions and normal bowel control is buried within our subconscious and is a voluntary process.14 Underlying health conditions disrupt the status quo, and those who are incontinent are challenged by social taboos and stigmatisation of AI that thus impacts on non-disclosure.2

Non-disclosure of AI contributes to a lack of understanding as to the true prevalence and impact of AI on a person's quality of life.15 This has been cited within evidence-based research as a major issue in the underreporting of AI, which further contributes to the low priority given to AI in healthcare education, service provision and policy-making.7,15,16

Healthcare professional's attitudes have the potential to further influence the disclosure of AI.13 Rasmussen and Ringsberg7 reported women often felt marginalised due to health professionals' inability to listen and understand their concerns of living with AI. This may have been contributed to by health professionals' underlying beliefs of AI and the low priority AI receives within society and the healthcare system.13 The recommendations from Rasmussen and Ringsberg's7 study suggest health professionals need to develop an awareness of AI and its impact on quality of life, ask women questions pertaining to AI and provide appropriate management.

The social stigma attached to AI further prevents people from speaking out, yet effective communication was cited within the research literature as essential for those afflicted with AI to voice their experiences in order to raise awareness as to the impact of AI on quality of life.13 The holistic nature of nursing and midwifery as a caring professional practice places the health provider in a prime position to open a dialogue in an area that is deemed taboo within society and allows women to voice their experience.13 The opportunity to share personal experiences of AI provides further information as to the effects of AI and provides a base from which informed healthcare can be built.17

Pregnancy and childbirth are within the midwives scope of practice; however, midwifery research that addresses OASIS and AI is limited. Importantly, nurse researchers have provided insight into the debilitating impact of AI on quality of life. Qualitative interviews commonly utilised by nurse researchers employ the use of informal open-ended interviews to gain an understanding of the multiple complexities of an experience from the participant's viewpoint.18 Qualitative research methodology has been adopted by nurse researchers in providing the opportunity for those afflicted by AI to identify the impact of AI on quality of life.7,19 Wilson's19 research investigated the impact of AI on a community-dwelling population providing a detailed description and understanding of the stigma and shame associated with AI and the resultant negative impact on quality of life. Wilson's19 research raised awareness and understanding as to the debilitating impact of AI on a person's life; however, this mixed gender research provided little information as to the impact of AI for women with a history of OASIS. Rasmussen and Ringsberg7 and Williams et al.20 addressed the psychosocial and emotional impact of OASIS injury. Their research provided the perspectives of women with a history of OASIS across the lifespan (mean ages of sample studies ranged between 28 and 50 years and 27-37 years, respectively).7,20 Importantly, their findings identified that loss of control is a main concern resulting in anxiety, shame, embarrassment and anger. Loss of control severely impacted on women's ability to fill expected social roles resulting in self marginalisation, reinforced by negative professional attitudes. Research outcomes highlighted both the significance of OASIS, its impact on quality of life and the importance for skilled health professionals to develop an understanding of the problems associated with OASIS and AI through open dialogue.7,20

The reviewed literature identified barriers to disclosing AI and ultimately accessing effective healthcare. Lack of professional and public awareness contributes to the social stigmatisation of AI and resultant impact on nondisclosure by those afflicted by AI.7,13 AI negatively impacts on the emotional and psychosocial well-being of an individual. The individual person's perspective of living with AI is paramount in the assessment and implementation of appropriate sensitive healthcare. Unfortunately, their silence remains unbroken as health professionals' attitudes can enhance or detract from the delivery of appropriate healthcare.13 Health professionals need to be proactive in breaking the silence for those afflicted by AI. It is only through a deeper understanding of the individual's perspective that the true impact on their quality of life will become apparent and accordingly appropriate care planned.

Assessing quality of life

The World Health Organization states that a person's quality of life is an individual perception of what their life means and is influenced by culture, personal beliefs and expectations.21 Quality of life is also affected by physical, psychological and social factors and the relationship with the environment.21 Therefore, while similarities exist for a person living with AI, a deeper understanding of the experience is required to understand the complexity of its impact on quality of life.

Anecdotal evidence gathered from conversations with Continence Nurse Specialist Steel; Coates; Robinson and Tucker (July 2011) highlighted the impact of AI on a women's quality of life. Conversations provided insight into the shame, humiliation and anger associated with the impact of AI on the psychological, social, sexual and physical aspects of women's lives. This view is supported by research literature that details the devastating effect of AI on a person's quality of life; however, the nature and depth of AI has been poorly portrayed.7

Clinically derived measuring tools have been developed to assess and measure the impact of AI on quality of life; however, they have been largely unsuccessful. A variety of scoring systems such as the Cleveland, Wexner and St Marks incontinence score (Vaizey score) have been developed to quantify and objectively assess the physical impact of AI on a person's life.22 The Vaizey score is a reliable and objective assessment tool in the identification of severity and impact of AI. The Vaizey score is superior to other symptom severity scores as it is easy to implement and includes two quality of life areas, that is the frequency of wearing incontinence pads and impact on lifestyle.22 However, the Vaizey score is unable to provide in-depth information as to the impact of AI on a person's quality of life.

Fornell et al.12 described the use of a clinically derived questionnaire to assess the long-term psychological, sexual and social impact of AI on women's lives following a history of OASIS and vaginal delivery. Findings add to the paucity within the literature of the long-term effects of AI and OASIS. Each question required a Likert scale response between 1=severe problems and 6=no problems. The findings focused on anal function and the increased incidence and severity of AI; flatus incontinence is of particular concern. No differences were noted in sexual function over the 10-year period. However, the questionnaire was not validated, and the findings of the research provided little depth or understanding on the impact of AI on women's lives. Clinically derived questionnaires by nature often underestimate the participants' perspectives and coupled with non-disclosure by women due to the stigmatisation of AI; this results in the true experience and impact of AI remaining largely unknown.23,24

The validity of clinically derived questionnaires relies on client input. Rockwood et al.25 designed and tested a faecal incontinence quality of life scale (FIQL) that is noted for its reliability and validity. The initial FIQL was formulated by clinicians and pre-tested on 50 participants. Feedback was sought from participants, and the initial 41-item quality of life questionnaire was further refined to include 29 items. The items assessed four health-related areas of lifestyle, coping/behaviour, depression/self-perception and embarrassment. The study sample was mixed gender with a mean age of 58.7 years. The FIQL identified AI affected all four health-related areas; importantly social functioning and self-image. However, the FIQL was not derived from within the postnatal population and may not adequately evaluate the impact of AI, specifically in women who have sustained OASIS.

A mixed-method research undertaken by Cotterill et al.23 highlighted the benefits of including patient perspectives in the development of questionnaires that evaluated incontinence symptoms and impact on quality of life. The research findings identified and incorporated several key areas that had previously been poorly addressed in quality of life scales. These areas included the unpredictable nature of AI, fear of leaving home, shame and embarrassment. Cotterill et al.'s23 research formed the basis for the International Consultation on Incontinence Questionnaire bowel module questionnaire, a tool that provided a more accurate assessment for those people living with AI.

Quality of life following a history of OASIS

Three quantitative research studies utilised validated quality of life scales to capture the experiences of AI in postnatal women following OASIS.26,27,28 Tin et al.28 and Samarasekra et al.27 utilised a clinically derived quality of life scale that focused primarily on the prevalence of AI. The pelvic floor distress and impact questionnaires, which identified a relationship between the extent of OASIS damage and worsening impact on quality of life, were utilised by Tin et al.28 However, there was no in-depth discussion as to the impact on quality of life. Additionally, Samarasekra et al.27 identified the impact of AI on non-disclosure, coping, depression, self-perception and embarrassment. While a brief discussion as to the impact of non-disclosure was provided, it was apparent that little depth as to the experience of living with AI was revealed. Further research by Cockell et al.26 sought to redesign a validated faecal incontinence quality of life tool utilising a mixed method approach, which provided a richer and deeper understanding of the interpersonal impact, health provider response and preoccupation impact of AI on postnatal women's quality of life.

Furthermore, the Cotterill et al.23 quality of life scale captured a deeper appreciation as to the impact of embarrassment as a result of AI on postnatal women's lives in comparison with Rockwood et al.'s25 FIQL. However, as with all quality of life scales, they are disease specific and only reflect a bearing on the status of quality of life and do not provide women the opportunity to have their concerns voiced in any depth within the research.

Qualitative research, in particular grounded theory research, provides a greater understanding into the social impact of AI on quality of life; however, research within this area is limited globally and in particular within Australia. Two qualitative research studies from Denmark and the United Kingdom provided greater insight into women's experiences following a history of OASIS and allowed women the opportunity to articulate the debilitating psychosocial and emotional impact on their quality of life.7,20 Additionally, through women's stories, Rasmussen and Ringsberg7 provided a deeper understanding as to the marginalisation and negative impact of AI on women's quality of life. The mean age for participants within this research ranged between 26 and 50 years, reflecting the long-term impact of AI following a history of OASIS across the lifespan. Conversely, Williams et al.20 provided only a limited discussion in regard to the direct impact of AI on a person's life. The nature of qualitative research findings are difficult to generalise to the wider population. Nevertheless, both Rasmussen and Ringsberg7 and Williams et al.20 provided valuable insight into an issue that is currently poorly researched and understood.

This review of the literature demonstrates that there is minimal research that provides a profound understanding of women's experiences of AI following a history of OASIS. Given the increasing prevalence of AI within the Australian community and potential roadblocks to disclosure, there is an urgent need for clinicians to implement practices and research that will provide personal accounts of the experiences women encounter as a result of AI and its resultant impact on their quality of life. Quality of life questionnaires and symptom severity scores provide an objective guide as to the impact of AI on a person's life. However, clinicians need to be mindful that these scales are validated and reliable and pertinent to the intended population. Furthermore, while it is beneficial to objectify and compare the impact of AI across a population, we are all individuals and our perception of impact on quality of life will vary regardless of the severity of AI. Approaches that derive a deeper understanding as to the impact on quality of life are therefore warranted to assist in the appropriate clinical assessment and planning healthcare.

Conclusion

This paper presents the known contemporary literature relating to women's experiences of AI following a history of OASIS, the impact on quality of life and identified inconsistencies and gaps within research. Findings suggest that alterations in clinical practice will enhance the assessment and management of AI and improve quality of life for women following OASIS. Health professionals need to adopt a standardised definition of AI to enhance accurate identification and true prevalence of AI. Quality of life and symptom severity tools need to be validated and be reliable and specific to the intended population. Health professionals need to be mindful, that while these tools provide valuable information, by nature they are limited in the awareness of the impact of AI from the perspective of those it impacts upon. Additionally, while further qualitative research will provide a greater insight into the impact of AI on quality of life, the health professional can be proactive in breaking the silence surrounding AI through effective communication. Enquiring further as to the impact of AI on quality of life will reveal a complex web of need that the health professional can reassess and plan sensitive, appropriate healthcare.

References