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Authors; Umair Majid, and Carolyn Spry.
Fecal incontinence (FI) is a condition where an individual has the inability to control bowel movements due to the weakening of rectal and anal sphincter muscles, which may result in the accidental or involuntary leakage of fecal matter,1 in liquid or solid form, as well as gas.2 Like FI, accidental bowel leakage (ABL) also refers to the loss of normal control of the bowels.1 A recent systematic review showed that about 1 in 12 individuals worldwide have FI.3 FI is most prominent in women and older individuals but can still occur among other groups.3 This condition is often embarrassing and can pose difficulties in social situations and environments.1 Due to such embarrassment, FI often goes unreported,2 making determining the true occurrence of FI difficult.4
Various management and treatment options exist for FI. People with FI can self-initiate FI management, primarily through dietary and lifestyle modifications, as well as seek further provider-guided and/or surgical treatment. Provider-guided treatment options include dietary and lifestyle modifications, physical therapy, biofeedback, medications, and supplements.4 However, surgical interventions are the next option when non-invasive treatment options fail. SNS, or sacral neuromodulation, is among the surgical interventions.2 SNS is a procedure in which the sacral nerve is given electrical pulses at its spinal origin to stimulate the pelvic floor muscles.2,4 Currently, in Canada, SNS is offered as a treatment option for people living with FI in 5 provinces.5 As other jurisdictions deliberate on adopting SNS to treat FI, it is important to understand people’s experiences living with, caring for and managing FI. This rapid qualitative review aimed to summarize the evidence on the perspectives and experiences of people living with FI and their care providers on their care and management of FI, with a particular focus on SNS.
Recognizing Indigenous Peoples’ experiences, values, needs, and priorities is crucial for understanding and advancing the state of health technologies and health services in Canada. They also play a vital role in guiding decision-making concerning the management and care of FI. In the interest of fostering culturally safe practices and following careful consideration, we have determined it would not be appropriate to seek input from Indigenous Peoples regarding their perspectives and experiences for the following reasons. The rapid nature of this review precluded the ability to engage with Indigenous Peoples and Knowledges appropriately. Due to the limited time frame for establishing respectful and meaningful relationships with Indigenous Peoples to inform this work, CADTH acknowledges that any efforts to incorporate Indigenous Knowledges and voices would not be culturally appropriate or safe. Moreover, such attempts may have inadvertently perpetuated harm. CADTH acknowledges the lack of engagement with and inclusion of Indigenous perspectives and voices constitutes a major limitation and gap in our work. In the spirit of reconciliation, CADTH is committed to engaging with Indigenous partners to develop a strengths-based approach and process to conduct future work that respectfully explores and incorporates Indigenous Knowledges, perspectives, and experiences.
What are the perspectives and experiences of people living with fecal incontinence, as well as their care providers, on their care and management with a particular focus on engaging with sacral nerve stimulation for the management of fecal incontinence?
An information specialist conducted a literature search on key resources, including MEDLINE, CINAHL, Scopus, the Cochrane Database of Systematic Reviews, the International HTA Database, the websites of Canadian and major international health technology agencies, as well as a focused internet search. The search approach was customized to retrieve a limited set of results, balancing comprehensiveness with relevancy. The search strategy comprised both controlled vocabulary, such as the National Library of Medicine’s MeSH (Medical Subject Headings), and keywords. Search concepts were developed based on the elements of the research questions and selection criteria. The main search concepts were fecal incontinence and sacral nerve stimulation. CADTH-developed search filters were applied to limit retrieval to qualitative studies. The search was completed on September 22, 2023 and limited to English-language documents published since January 1, 2013.
One reviewer screened citations and selected studies. In the first screening level, titles and abstracts were reviewed and potentially relevant articles were retrieved and assessed for inclusion. The final selection of full-text articles was based on the inclusion criteria presented in Table 1.
Selection Criteria.
Articles were excluded if they did not meet the selection criteria outlined in Table 1, were duplicate publications, or were published before 2013. Specifically, studies were excluded because they either combined patients with both urinary and fecal incontinence in their samples, concentrated on pediatric populations, or included people with FI in the presence of another disease or condition (e.g., obstetric injury, low anterior resection syndrome, irritable bowel syndrome, and rectal or pelvic cancer).
A single reviewer critically appraised the included publications using the Quality of Reporting Tool (QuaRT) as a guide.6 This tool assesses the reporting quality of included studies based on 4 methodological characteristics: question and study design, selection of participants, methods of data collection, and methods of data analysis. Summary scores were not calculated for the included studies; rather, the strengths and limitations of each included publication were described narratively.
Using a structured data extraction template, a single reviewer extracted the following descriptive details from each article: the objectives, country of publication, study design, qualitative methodology or analytic strategy, data collection techniques, sample size, gender distribution, age, and race/ethnicity. One reviewer analyzed this information using descriptive statistics to provide an overview of the range of literature characteristics and participant demographics.
The qualitative metasynthesis approach guided the data analysis.7 This approach consolidates findings from the selected studies, ensuring that the original meaning of each study’s finding is retained in the final collective interpretation. Employing the constant comparative method from constructivist grounded theory,8 the reviewer extracted, juxtaposed, and amalgamated findings to comprehensively interpret the themes and concepts identified in the selected studies. The interpretation was crafted with a focus on informing policy and decision-making deliberation.
The reviewer undertook 2 iterative coding cycles using Microsoft Word. In the first stage, the reviewer analyzed 3 studies from diverse geographical regions. The reviewer analyzed these studies to discern, question, deconstruct, and reconstruct themes and concepts through a line-by-line analysis. This swift perusal of the data facilitated a broad comprehension of themes and concepts, creating a pilot coding framework that captured some of the challenges and experiences faced by people with FI. Then, the reviewer extracted relevant themes and concepts from the remaining studies using the coding framework. These findings either reinforced the existing themes and concepts in the framework or introduced novel insights. The reviewer shared an analytic memo with another researcher to solicit feedback to ensure alignment with the research question. The emphasis during this stage was on extracting themes and concepts that might be useful for policy deliberations and could offer insights on the topic. Subsequently, the reviewer probed deeper into the data to assess the feasibility of conducting nuanced subgroup analyses. The goal was to distinguish between the perspectives of people with FI and their health care providers, recognizing that each group might have unique experiences and insights.
Moreover, special attention was directed toward understanding the experiences across various social identity characteristics. The reviewer used the Scoping and Evaluation stages of the Equity Checklist for Health Technology Assessment (ECHTA) as a guide to attune to the possible equity-related insights from included studies related to FI.9 Health equity was framed as fair and just opportunities for individuals to access, engage with, and benefit from FI care, all while striving for optimal health outcomes and experiences. The term ‘equity of access’ was defined as fair and just opportunities for individuals to secure and provide immediate care throughout their journey with FI. ‘Equity of use’ was understood as fair and just opportunities for patients and their families to receive care that fully addresses the physical, mental, cultural, and spiritual dimensions of FI. Conversely, ‘equity of benefit’ was identified as fair and just opportunities for all involved, from patients and families to health care providers, to strive for holistic health for people with FI. The reviewer used descriptive analysis to identify whether and which voices and experiences of equity-deserving groups were represented in the included literature. Attention was paid to discern whether qualitative data points were explicitly linked to equity-deserving communities or were aggregated experiences of multiple communities. In cases where findings were disaggregated based on social identities, we aimed to highlight such distinctions in the findings; however, the included studies did not provide findings across various social identities. Throughout data analysis, the reviewer was attentive to potential disparities in access, application, and benefits associated with FI. The analysis also probed if uneven distributions, systemic biases, or care approaches might have influenced these disparities. Rather than strictly using equity dimensions as a coding blueprint, these elements served as foundational pillars, enriching the interpretation of the data.
In the final coding stage, the reviewer re-evaluated and restructured all coding to ensure a thematic saturation by pinpointing consistencies, overlaps, and discrepancies among themes in the subsequent focused coding phase. The reviewer then summarized each theme narratively, and all summaries were amalgamated to formulate an integrative interpretation of the findings.
A total of 494 citations were identified in the literature search. Following the screening of titles and abstracts, 405 citations were excluded, and 89 potentially relevant publications from the electronic search were retrieved for full-text review. In addition, 3 potentially relevant publications were retrieved from the grey literature search for full-text review. Of these 92 potentially relevant publications, 79 publications were excluded for various reasons, and 13 met the inclusion criteria.1,10-20 These comprised 11 (85%) primary qualitative studies,1,10,12-20 and 2 (15%) primary mixed-methods studies.11,21 Appendix 1 presents the PRISMA flow chart of the study selection.22
Additional details regarding the characteristics of included publications are provided in Appendix 2.
Of the included studies, 85% (n = 11) of the publications were primary qualitative studies,1,10,12-20 and 15% (n = 2) were primary mixed methods studies.11,21 Of these, 38% (n = 5) publications employed content analysis,1,11,12,15,18 31% (n = 4) employed grounded theory and adapted approaches,10,14,19,20 8% (n = 1) used framework analysis,21 8% (n = 1) used phenomenology,16 8% (n = 1) used thematic analysis and adapted approaches,17 and 8% (n = 1) did not specify the qualitative approach.13 For data collection methods, 46% (n = 6) of publications used semistructured interviews,13,15,16,19-21 23% (n = 3) used focus groups,10,11,18 23% (n = 3) used both semistructured interviews and focus groups,12,14,17 and 8% (n = 1) used an open-ended survey.1
Of the included publications, 38% (n = 5) were from the United States,1,10,12,14,18 31% (n = 4) from the UK,17,19-21 15% (n = 2) from Canada,13,15 8% (n = 1) from Norway,11 and 8% (n = 1) from Sweden.16
Approximately 69% (n = 9) of the publications focused on individuals with FI alone,1,10,12,16-21 23% (n = 3) focused on both individuals with FI and health care providers,13-15 and 8% (n = 1) focused solely on health care providers.11 In total, the included literature represents the experiences and perspectives of 306 participants (30 health care providers and 276 people with FI). 77% (n = 10) of the publications reported the participants’ gender.1,10-12,14,16-20 70% of 10 (n = 7) of the publications had only female participants,1,10-12,14,16,18 and 30% of 10 (n = 3) publications had both male and female participants.17,19,20 In total, the publications included 234 females and 10 males with FI.
The race and ethnicity of participants were reported in 46% (n = 6) of the publications.1,10,12,14,17,18 All of these publications included participants who identified as Caucasian or white;1,10,12,14,17,18 83% of 6 (n = 5) publications had participants who identified as Black, African American, or Afro-Caribbean;1,10,12,17,18 50% of 6 (n = 3) publications had participants who identified as Hispanic;12,14,18 and 17% of 6 (n = 1) included participants who identified as Asian.17 From the publications that reported the ethnicity and/or race, the total number of participants was 237. Out of the 237 participants, 172 (73%) were Caucasian or white, 23 (10%) were Black or African American, 1 (0.4%) was Afro-Caribbean, 10 (4%) were Hispanic, 3 (1%) were Asian, and 28 (12%) were either in the other or unknown category.
Of the 13 publications, 0 provided a research question; however, 92% (n = 12) provided research objectives,1,10-12,14-21 and 8% (n = 1) did not provide a research question or objective.13 Of the publications, 69% (n = 9) provided participant selection criteria;1,10,12,14-16,18-20 whereas 15% (n = 2) did not,13,17 and 15% (n = 2) was unclear.11,21 All 13 publications identified the data collection methods used.1,10-21 92% (n = 12) publications described the data analysis approach,1,10-12,14-21 and 8% (n = 1) did not.13
Additional details regarding the strengths and limitations of included publications are provided in Appendix 3.
The following sections provide the analytical findings of this review, highlighting the perspectives and experiences of people living with FI and their care providers with the care and management of FI. In particular, we discuss the following topics: the complex experience of FI; self-initiated management strategies, non-invasive provider-guided and surgical treatments for FI; the barriers to treatment-seeking for FI; and suggestions for improving continence care. However, it is important to note that none of the included studies focused on perspectives or experiences of SNS. Only 1 of the 13 studies included perspectives and experiences of people with FI specific to SNS.
The symptoms of FI presented a spectrum of experiences. Individuals from the included studies frequently highlighted the significance of monitoring stool consistency.19,20 The variability in symptoms ranged from those who experienced constant leakage to occasional episodes. Daily life became a delicate dance for the severely affected, with daily routines and activities centring around managing FI. Factors such as the type, volume, and frequency of leakage, combined with the associated noise and odour, shaped their perception of the severity of their condition.18,19 The unpredictability of leakage episodes further compounded the challenges. While some could occasionally anticipate an episode through sensations like “a sharp pain” or “cramping,” many navigated a sea of uncertainty, never genuinely knowing when leakage might strike.18,19 This unpredictability often pushed them to withdraw socially and abandon activities they once cherished.18,19
The emotional landscape of those living with FI is complex and marked by various negative feelings. Individuals with FI expressed anger, frustration, disappointment, hopelessness, despair, and sadness, painting a vivid picture of the emotional toll FI takes.16 The emotional toll of FI, together with worsening symptoms, negatively affects mental well-being. While some believed that FI is a natural part of aging,12,13,15,16 others viewed FI as an inevitable consequence of aging, genetic inheritance or childbirth.12 In contrast, other individuals with FI were in denial, believing their symptoms were temporary aberrations that would resolve without clinical intervention.12
Living with FI is a deeply personal and often distressing journey, marked by many emotions and challenges. For people with FI, articulating their experiences becomes challenging, especially when delving into relationships, sexuality, and encounters with friends, family, and health care providers. The profound nature of this condition is evident in the words of those who endure it. Individuals described FI as the “worst thing to suffer,” associating it with feelings of repugnance and shame.12,16 They used vivid terms like “bad,” “smelly,” “dirty,” “funky,” and “nasty” to convey how FI disrupts their sense of self and interferes with daily life.12,16 Central to the narrative of FI was the looming anxiety and fear of potential leakage in public spaces. This fear was intensified by concerns about odour and the possible judgments of others, leading to overwhelming feelings of guilt and embarrassment.12,16 Furthermore, while the condition might not always manifest visibly, its invisibility presents a paradox for those affected.16 On the 1 hand, there was a wish for their struggles to be more recognizable; on the other, there was a genuine desire to keep FI hidden from others, emphasizing the importance of discretion.10,12,16,17,19
Study participants viewed FI as a taboo, a sentiment reinforced by popular culture.12,15-17,19 Living with FI was fraught with embarrassment, with individuals attributing their symptoms to personal actions, often leading to self-blame.12,16 As described by this individual living with FI, “I think it‘s hard to live with it…It reflects a lot of my self-image…How I perceive myself physically. I have other images of how I see myself as a human and I am competent in other ways, but as a woman…As a physical object, I feel…devastated.”16
The fear of public leakage episodes and concerns about odour and societal perceptions amplify guilt and embarrassment.16 While the odour of accidental flatulence might not have been a source of embarrassment in public for some, the sound certainly was.18 Terminology also shaped perceptions, with terms like “anal” or “fecal” being embarrassing. Instead, people with FI showed a preference for terms like “accidental bowel leakage” and “leakage” over “incontinence.”18
This stigma often manifested in social behaviours. People with FI frequently reported avoiding social interactions because of their FI, eventually leading to isolation.12,16,18,19 They often felt alone in their FI experience and, out of consideration for others, took measures to ensure others did not get exposed to their fecal matter.12,19,20 This concern extended to their perceptions of what others might think of them, with people with FI fearing negative judgments.16 Some even said they would rather die than disclose their condition to loved ones.12 As this 1 study participant living with FI reported, “The older I get, you see, the more I think maybe I don’t ever have to tell my children. I could have a stroke or a heart attack; they’ll never know, you know? Just quietly die.”12
While individuals deemed FI as not an acceptable topic of conversation with others, some felt they could discuss their FI with partners and health care providers.16 The tension between the need to seek care and the embarrassment of doing so was evident in included studies, with some seeking care due to shame and others being reluctant but eventually seeking help.10,12,17
Living with FI brings about profound changes in the lives of those affected. People with FI consistently expressed how their daily routines and interactions have been altered due to the condition.16 The unpredictability of FI was a looming concern for people with FI. They believed there was no guarantee against leakage, which often made home the only true sanctuary—where the fear of unexpected events was minimized.16 As this individual with FI highlights, “Because you don’t know when it’s going to come. It’s just the weight of this fear, that it’s coming and I don’t know when.”18
The unpredictability of symptoms often resulted in individuals limiting their social interactions and foregoing previously enjoyed activities.12,15,16,18,19 However, some individuals felt that FI did not significantly impact their interactions with friends and family, highlighting how the experience of FI differs across this population.16 Factors such as the type, volume, frequency of leakage, and its overall impact on life shaped how people with FI perceive the severity of their condition.18 For some, deteriorating health and bowel control lead to increased dependency on others.19 Other individuals, especially those grappling with poor mobility and comorbidities, felt that FI consumed their lives.20 The condition’s impact on vitality and productivity was palpable, slowing daily activities, including aquafit, travel, volunteering, bathing or sunbathing in public places, using public transportation, and being physically active.15,16 Some people with FI reported avoiding sex due to the fear of leakage during intercourse, although some reported that their sex life remained unaffected.12,16 Others reported physical symptoms associated with FI, such as urinary tract infections, burning sensations in the genitals, and persistently sore skin.16
Living with FI requires practical strategies and emotional and psychological coping mechanisms. People with FI adopted practical, self-initiated and often time-consuming strategies to manage and mitigate leakage risks.16 While some individuals established daily routines to cope, others found it challenging to plan their day, choosing instead to address issues as they arose.16 This constant need for preparation and planning permeated every aspect of their lives, from daily activities to intimate moments, such as sexual activities.16 People with FI often resorted to self-initiated lifestyle modifications, encompassing pharmaceutical, dietary, or practical measures—such proactive measures allowed for better self-management. Some individuals also sought further provider-guided and surgical treatments. In contrast, those adopting a more passive or resigned stance tended to achieve less adaptation to the changes brought by FI to their lives.19
Some individuals expressed a need to adapt, emphasizing that life must continue despite the challenges.16 While some prepared themselves by always expecting the worst-case scenario, others acted as if nothing happened when faced with public leakage incidents.16 Humour emerged as a coping mechanism for some, who joked about their predicaments or laughed at their misery.16 Others indulged in self-pity, while some remained in denial, awaiting clinical treatment.19
Acceptance played a pivotal role in coping. Some people with FI came to terms with what could not be changed, with their approach often influenced by how they perceived themselves about others.16,19 Some found solace in thinking of others who might be in worse situations or reflecting that FI, while challenging, was not a fatal disease.16 This perspective allowed some individuals to remain hopeful and optimistic about the future. However, concerns lingered for others, particularly about the potential worsening of their condition with age and the fear of becoming dependent on family and friends.16 The following sections will discuss self-initiated diet modification and lifestyle strategies; motivations to engage in non-invasive provider-guided or surgical treatment for FI; experiences with surgical treatments for FI; and provider recommendations and strategies for the management and non-invasive treatment for FI.
People with FI recognized that diet played a pivotal role in the manifestation and severity of FI.10 This realization was a product of a lengthy process. While some were initially skeptical, through “trial and error,” they discerned that specific dietary components exacerbated their FI symptoms.10,19,20
Through self-monitoring, various foods emerged as triggers, including coffee, chocolate, dairy products, certain meats, leafy greens, beans, fruits, fruit juices, and even certain sauces and gravies.10 The method of food preparation also mattered, with fried, spicy, greasy, rich, and hot foods identified as exacerbating factors.10 Moreover, the size and frequency of meals played a role, with large meals or even small amounts of food sometimes triggering bowel urgency and leakage.10
Specific dietary modifications included avoiding certain foods or food groups, modifying preparation methods, and adjusting the timing and amount of food consumed.10,14,16 For instance, some individuals opted for smaller, more frequent meals, changed meal timings, or established routine eating habits.10,14 Some individuals want to prepare their food to control the ingredients and preparation methods.10
Despite these findings, individuals’ willingness to modify their diets varied. While many were open to dietary changes, some were reluctant to give up foods they enjoyed, especially if the symptom improvement from removing these foods from their diet was modest.10 Some even confessed to occasional indulgences, like eating out without antidiarrheal medication or ignoring toilet urgency when busy with other activities.20 While people with FI self-initiate diet modification strategies, they also seek further provider-guided support in managing their diets. However, any dietary modification plans, they felt, should consider an individual's readiness for change, as this might predict adherence to care plans– some individuals may be more willing to change their diet more drastically than others to address FI symptoms.10
People with FI described many strategies they adopted to manage the urgency and odour associated with FI. Many resorted to frequent toilet visits, with some choosing to go right after each meal.14,16 Others adopted the practice of taking enemas in the morning or symptom relief medication before dining out to manage their symptoms pre-emptively.16,19 Practical solutions like using diapers, panty liners, and carrying extra clothes when venturing outside became commonplace for some individuals.16 The challenge of managing FI outside the home has led some to stay indoors, given the additional preparations required when leaving.16 A constant awareness of nearby toilets provided a sense of security and comfort for people with FI, ensuring they could respond promptly to any urgency that might occur unexpectedly.16,19 To control the smell associated with accidental leakage or flatulence, some individuals avoided using public toilets, choosing instead the privacy of their homes.16 Constant attention to genital hygiene was also a common strategy, ensuring they remained as clean and odour-free as possible.16
The journey toward symptom improvement involved exploring various treatment options. However, treatment experiences and choices were deeply personal and varied among individuals. Having learned to cope with FI over time, some individuals declined treatments like SNS, preferring to continue refining their lifestyles through dietary or medicinal strategies.20 Yet, there was hope and motivation among some people with FI to partake in new treatments stemming from a profound belief in the potential benefits of these treatments in improving their daily lives and function.15 The overarching desire was to lead a life free from the constant worry of bowel movements and leakage, travel without fear, engage in daily activities, provide care, and experience intimacy without the looming threat of leakage.1 Some were also motivated by a desire to prevent the worsening of their condition.1 For others, the responsibility or intention of being a caregiver for someone else was a driving force to manage their FI better.20
At its core, FI improvement revolved around regaining control over bowel movements. For example, people with FI said making stools firmer would significantly alleviate the impact of their condition on their lives.18 Furthermore, decreasing the volume and frequency of leakage emerged as a crucial treatment outcome, offering them a semblance of normalcy.18 The unpredictability of FI was a significant source of distress; thus, having a better awareness of signs when bowel leakage might occur was vital. As this individual with FI described, “If I had enough time to make it to the bathroom before it starts to come out, that for me would be a measure of success.”18
Decreasing the associated urgency and feeling cleaner, without the need for repeated wiping, were viewed as improvements in their condition.18 Furthermore, the ability to distinguishing between flatus and fecal or mucus material was helpful awareness.18 Such heightened awareness would allow individuals to plan better for containment strategies and managing timely bathroom access; thereby, improving predictability in leakage and bowel movements.18
One study reported experiences of people with FI with surgical SNS and percutaneous tibial nerve stimulation (PTNS), a less invasive surgical intervention compared to SNS.21 People with FI had positive experiences with SNS and PTNS treatments, highlighting the high acceptability and satisfaction with both treatments. People with FI reported substantial symptomatic relief, such as improved ability to defer defecation, heightened self-confidence, and better hygiene. These benefits gave hope and optimism for the future, offered patients a sense of control and freedom and allowed them to return to normality. Additionally, there was a notable reduction in anxiety levels, feelings of support from the health care providers, and some expressed regret for not initiating surgical treatment sooner.
However, people with FI experienced inconveniences, including delays leading to work absenteeism, added costs, and challenges related to the logistical demands of treatment sessions.21 Specifically, people with FI receiving SNS expressed apprehension about postoperative recovery and associated disruptions to daily life (e.g., transportation, time off work, indirect costs), while individuals receiving PTNS reported treatment side effects like aching feet. Furthermore, while bowel diaries were user-friendly, they were insufficient for those with constant symptoms, and the extensive questionnaires completed during medical visits were deemed time-consuming and often irrelevant to their experiences and concerns.
Providers’ recommendations and strategies played a pivotal role in shaping patient outcomes. A consensus among physicians was endorsing certain lifestyle and dietary modifications for people with FI. Recommendations commonly include increased fibre intake, pelvic floor exercises, and the use of a food diary to pinpoint triggers and optimize bowel consistency and regularity.14 Additionally, there was general agreement on the benefits of laxatives, antidiarrheal medications, enemas, and biofeedback for specific patients. Encouragingly, physicians believed that a significant majority, around 70% to 80%, of patients would experience improvement in their FI with these therapies.14 Providers suggested several lifestyle strategies such as regular toileting, maintaining good bowel hygiene, and establishing routine eating habits. The overarching theme was a shift toward preventive health for FI, with therapies meticulously tailored to the individual and their expectations.15 No studies discussed providers’ perspective on surgical treatments for FI.
As symptoms become increasingly intrusive and interfere with daily life, the urgency to seek treatment intensifies.12 This interference manifested in various ways, from limiting social interactions to affecting one’s professional life. The more these symptoms infringe upon an individual’s quality of life, the more people living with FI seek clinical intervention. Yet, even as the need for care becomes apparent, the shadow of embarrassment looms. Both individuals and providers believed that the nature of FI, with its societal taboos, makes it a condition that many find difficult to discuss openly.12,14 This embarrassment can be so profound that it delays provider-guided or surgical treatment and sometimes deters individuals from pursuing it altogether.10,13,17 Beyond embarrassment and shame, many barriers limit care-seeking among people with FI. This section discussed the barriers faced by people with FI seeking care and by providers managing FI: lack of knowledge or awareness about FI; the fear and experience of provider-guided non-invasive or surgical treatment for FI; feeling unheard and helpless during medical encounters; limited access to provider-guided non-invasive or surgical treatment for FI, and administrative and interprofessional challenges in managing FI.
A lack of knowledge and understanding about FI was a significant barrier to effective care-seeking and treatment. This knowledge gap was not limited to people with FI but extended to health care providers, creating a dual challenge in addressing the condition.12-15 From the perspective of people with FI, there was an apparent lack of awareness about the very nature of their condition.13 This lack of awareness extended to treatment options, with individuals uninformed about potential treatments beyond surgery.15 Individuals with FI were unaware that ABL or FI were recognized medical conditions with non-invasive treatment options.12,13,15 Such gaps in knowledge led to feelings of helplessness and resignation, as individuals believed that no viable solutions existed for their condition.14
Health care providers also mentioned a prevalent misunderstanding among people with FI about available treatments. This lack of awareness was further exacerbated by a common misconception among individuals that FI was an inevitable consequence of aging.14,15 At the same time, providers felt constrained by the perceived limited assortment of treatments for FI.14 Physicians in 1 study expressed reluctance in treating people with FI stemming from the perceived complexity of the condition and doubts about its efficacy.14 Some providers felt helpless, especially when non-invasive treatments did not yield the desired results.15 Compounding this issue was that providers reported getting limited formal education on FI management, which left many relying heavily on hands-on experience to navigate this complex condition.13 Yet, amidst these challenges, providers genuinely hoped to improve the quality of life of those grappling with FI.15
People with FI wanted more information about their condition and available treatment options,14 and providers wanted more educational material and training sessions.13 However, individuals with FI reported relying primarily on personal experiences rather than guidance from health care providers to learn about potential treatments.14 Both people with FI and health care providers voiced the need for comprehensive education and training to ensure that those with FI can access and benefit from the care they need and deserve.
For individuals with FI, the physical symptoms are just 1 aspect of their struggle. An equally challenging barrier to seeking care was the psychological fear associated with treatment and the evaluation process.12 This fear was multifaceted and deeply rooted in concerns about the unknown and potential adverse outcomes of surgical treatment. A significant concern for many was that seeking care would lead to an unwanted diagnosis.12 This fear was not just about being labelled with a medical condition but also the implications of that diagnosis for their future. There was a looming anxiety that any proposed treatment might either be ineffective or result in intolerable side effects.12 Such fears can be paralyzing, making some individuals hesitant to begin the evaluation process.10,12,16
Compounding this fear was avoidance and denial. Some individuals with FI harboured the belief that their symptoms were merely a temporary aberration, hoping they would spontaneously resolve without provider-guided or surgical treatment.12 Even if individuals overcame these fears and beliefs, they reported experiencing distress from the procedures and the diagnostic process; they explained how the diagnostic exams for FI were humiliating and repulsive, adding another layer of aversion to seeking care.16
A recurring theme among individuals with FI was the feeling of discomfort and being dismissed by providers. Individuals in 1 study reported feeling that their physicians were uncomfortable discussing their condition, leading to dismissive or discouraging interactions.12 People living with FI described some physicians as not listening to their concerns, leaving them with a profound sense of being unheard, feelings of failure, and hopelessness.12,16 The disconnect between individuals with FI and providers was further exacerbated by the way providers approached the subject of FI. While providers might deal with FI regularly and consider themselves familiar with the condition, individuals found that their providers often generalized the problems they shared, failing to consider their unique experiences and challenges.16 This generalization and a lack of active listening made individuals with FI feel undervalued and uninvolved in their care decisions.12,16
The emotional toll of these negative interactions was significant. People with FI reported feeling neglected and vulnerable when in contact with physicians.12,16 Such experiences led to a sense of futility, with many feeling that seeking continence treatment was fruitless.14 This sentiment was further reinforced when individuals with FI, already frustrated, struggled to identify which provider would be most knowledgeable about the specific aspects of FI, such as dietary modifications.10
Even those who confidently entered the health care system, hoping for solutions, often felt deeply disappointed when their needs were unmet.16 Past negative experiences have a lasting impact. Some individuals with FI abandoned further care-seeking efforts after 1 or more negative encounters.12 This decision was often rooted in a belief that primary care physicians were either unaware of or unwilling to provide or refer them to the needed services.17 Such beliefs were not unfounded. People with FI reported their ABL or FI not being addressed, especially when symptoms were episodic or when they had other competing medical issues.12 Furthermore, physicians’ lack of direct inquiry about FI symptoms, possibly due to embarrassment toward the topic, further prevented individuals with FI from expressing their concerns about FI during medical consultations.17
With its intricate web of referrals and specialists, the health care system can be a maze for people with FI. Changes in primary care providers disrupt the continuity of care, making it harder for individuals to effectively communicate and manage their FI symptoms.20 Moreover, the complexity of the health care system’s structure led individuals with FI to be referred to departments that might not be best equipped to handle their specific needs.17 Delays in receiving treatment, sometimes 6 or even 18 months, generated distress and discomfort in those seeking relief.13,17,21
A recurring theme in the experiences of people with FI was the perceived invisibility of continence services at hospitals. Many believed these services were “hidden away” a sentiment rooted in primary care providers’ apparent lack of awareness or unwillingness to refer to these specialized services.17 This lack of promotion or advertisement further shrouded these services in obscurity, leaving individuals with FI feeling lost and unsupported. Even if they could access continence care, people with FI felt they were receiving a mere “pad service”,17 a band-aid solution that does not address the root of their issues. Some even felt prematurely discharged from continence services, reluctant to seek another referral given the challenges they have already faced.17
From the providers’ perspective, the intensity and duration of some treatments, such as those spanning 12 treatments over 12 weeks, can be daunting for people with FI. Providers believed that the potential time and financial constraints deterred individuals with FI from committing to such treatments, even if they were inclined to seek help.15 The treatment commitment was challenged because of various concerns, including time and transportation. Given the nature of their condition, travelling long distances without easy access to a washroom was a daunting prospect. This challenge was magnified when considering factors like winter weather or the associated costs of parking at medical facilities to receive treatment.12,15,17 Financial barriers further impeded access. The financial toll can be prohibitive for some, from the direct costs of treatments to indirect expenses like transportation and time off work.15
The management of FI extended beyond patient-provider interactions and delved into the broader organizational framework of heath care systems. Within this framework, providers highlighted several challenges, painting a complex picture of the health care landscape. A predominant issue was staffing. Many facilities reported being understaffed, which posed challenges in delivering optimal care.13 However, despite this constraint, providers showcased resilience, with many feeling comfortable in managing FI even amidst staffing shortages.13 Time constraints were another challenge, compounded by staffing shortages.11
Interprofessional collaboration, or rather the lack thereof, stood out as another significant challenge. Multiple health care providers described being involved in the care planning of patients with FI with limited professional collaboration and interaction.11,15 There was a prevailing uncertainty among providers on how to best communicate and report care information.11 For example, nurses found it difficult to allocate adequate time for tasks like patient assessments and developing care plans.11 Even when these tasks were completed, nurses felt that other health care providers did not thoroughly read or follow their detailed assessments and care plans.11 This made it difficult to disseminate accurate and consistent information to individuals with FI regarding assessments and care decisions.11
The introduction of FI guidelines was helpful for providers. These guidelines served as a guide, prompting providers to approach FI systematically and critically.11 The guidelines offered a structured approach to bowel assessments and assisted in identifying the cause of FI and potential interventions. They further acted as a decision support tool, aiding in meticulously developing and documenting care plans.11 Providers reported that implementing these guidelines improved patient outcomes, including reduced FI episodes, encouraging adherence to care plans and creating a positive feedback loop in FI care.11
However, while guidelines were beneficial, providers faced challenges when using digital tools. Providers grappled with inefficient software and a limited number of computers in their units, which hampered their ability to manage FI effectively.11 Additionally, some providers were reluctant to use computers, indicating a potential resistance to the use of digital tools in managing FI.11
Finding and obtaining appropriate care for the management of FI can be filled with challenges, but not all experiences are negative. Some individuals with FI recounted positive interactions and outcomes, particularly in the proper care settings. A segment of individuals reported positive experiences with their providers, emphasizing the importance of a compassionate and understanding health care provider.16 Once individuals with FI navigated their way into specialized continence services in the hospital, their experiences were generally positive. The environment within these specialized services seemed more attuned to their needs, with providers being comforting and responsive.15,17 However, the initial delay in accessing these specialized services remained a significant concern.15,17
People with FI voiced clear wants and had suggestions on how to enhance the management of FI. Their insights suggest adopting a person-centred approach, ensuring effective and empathetic care, as described below.
The importance of a positive approach from providers was central to FI care and management. People with FI valued being treated with empathy, having their concerns taken seriously, being listened to, and being seen as individuals with unique experiences and needs.16 They also emphasized the importance of providers initiating conversations about FI, as labelling it as a medical diagnosis can shift perceptions, potentially moving it from a self-blamed issue to a recognized medical condition.12,19
To enhance continence care, providers have offered a suite of suggestions. These ranged from logistical improvements, such as increasing staffing levels and ensuring better washroom signage, to more holistic approaches, like resident education on FI to alleviate stress and more hands-on training at the college level. Providers highlighted the need for more resident-centred care, family education about FI, and dedicated care time per resident. Providers also emphasized the importance of hospital or clinic management listening to staff concerns, advocating for permanent staff-resident pairing, and a judicious approach to using laxatives.13
The body of evidence in this review presents certain limitations. The first is the exclusion of studies on FI that are associated with other specific diseases or conditions. Eligible studies included in this review referred to people with FI or ABL outside of the context of other particular diseases or conditions. The rapid nature of this review precluded a comprehensive exploration of the topic. This decision aligned with the broader focus on FI, which removed studies linked to specific conditions such as obstetric injury, rectal cancer, low anterior resection syndrome, and irritable bowel syndrome. Such exclusions limited the breadth of perspectives and experiences of people with FI included in this qualitative rapid review, especially since many FI patients often have coexisting medical conditions. It is important to recognize that the non-mention of disease associations in the included studies does not guarantee the absence of such conditions among the study participants. It is possible the authors of the included studies did not consider disease associations in their eligibility criteria when recruiting their sample. As a result, insights from patients with an excluded condition might have unintentionally been incorporated into this review. Recognizing these research gaps there is a need to explore FI in the backdrop of associated diseases or conditions. Recent literature trends indicate an increasing focus in this direction, necessitating future research to offer a more comprehensive understanding of FI. However, integrating these additional studies would expand the topic's scope beyond the confines of a rapid qualitative review, warranting a full qualitative evidence synthesis.
Furthermore, only 1 of the included studies discussed SNS in the context of managing and treating FI.21 This limitation is significant given that the original scope of this work was to understand the experiences of individuals and their providers with SNS as a treatment modality for FI. The lack of literature specific to SNS underscores a critical gap in the current body of evidence. Future research needs to examine the experiences and outcomes associated with SNS, as it could offer valuable insights into its efficacy and the lived experiences of those undergoing this treatment.
Another limitation is the lack of representation of health care providers' perspectives. While some studies explored these perspectives, more detailed information can help fully understand the challenges and strategies from the providers' standpoint. Similarly, none of the included studies discussed the perspectives of caregivers and care partners. These limitations of the included literature underscore the need for in-depth research on providers. Gaining a deeper understanding of their challenges, strategies, and experiences is pivotal for a holistic approach to FI management.
Moreover, although several studies included a significant proportion of participants from equity-deserving groups, the findings failed to delineate their experiences and perspectives in the included studies explicitly. This generalization poses a considerable limitation, hindering our understanding of diverse communities' distinct challenges across various social identities. Considering Canada's diverse demographic, this limitation becomes even more pronounced when extrapolating these findings to the Canadian health care landscape. The undifferentiated experiences across multiple equity-deserving groups necessitate more detailed research. Given Canada's multicultural makeup, it is imperative for future studies to probe deeper into the distinct challenges and experiences of various social identities, including but not limited to race, ethnicity, Indigenous identity, and gender.
This rapid qualitative review included 13 studies to explore the perspectives and experiences of people living with FI and their care providers on their care and management. The rapid review provided a nuanced understanding of the various challenges people with FI face daily when seeking treatment for and managing FI. Beyond the physical symptoms, this review delved into the profound emotional and psychological toll of FI on individuals, affecting their self-worth, daily routines, and social interactions. The review also highlighted the societal perceptions and stigmas associated with FI, often leading to shame, guilt, and isolation. Furthermore, it underscored the various strategies individuals adopt, self-initiated and provider-recommended, to manage their symptoms—from dietary modifications to lifestyle changes and clinical interventions. Finally, this review highlighted the barriers to seeking care, emphasizing the need for a more patient-centred approach to managing FI. By integrating these diverse aspects, this review offers a holistic perspective on FI, emphasizing the importance of understanding and addressing the physical and emotional dimensions of it.
The findings of this review highlighted the resilience and adaptability of individuals with FI. They employ many strategies, from dietary shifts to lifestyle modification, to self-manage and mitigate their FI symptoms. Importantly, as reported in 1 study,21 people with FI described positive experiences and benefits with surgical SNS and PTNS treatments, including improved symptoms, heightened self-confidence and better hygiene. They also highlighted the need to address inconveniences associated with accessing and undergoing these treatments (e.g., transportation, time off work, indirect costs) and related apprehensions, like postoperative recovery concerns and side effects, such as aching feet after receiving PTNS.
The profound impact of FI on individuals extends beyond its physical symptoms, influencing emotional and psychological well-being. This condition, often shrouded in societal stigma, exacerbates feelings of shame, guilt, and isolation, making it more than just a medical ailment. Such feelings are further intensified by a significant gap in awareness and understanding of FI, a challenge that spans individuals with FI and their health care providers. This lack of understanding often translates into barriers to accessing appropriate care. In seeking relief and understanding, people with FI frequently confront systemic hurdles and, at times, health care providers who lack knowledge of FI or are uncomfortable discussing it because of the societal taboos surrounding it.
Drawing on the findings of this review, targeted interventions at both societal and professional levels may support access to FI care and outcomes. Concurrently, these findings highlight health care professionals’ need to integrate FI management into medical curricula and organize specialized seminars. This dual approach can bridge the knowledge gap, ensuring people with FI receive informed and compassionate care.
People living with FI described suggestions for a transformative shift toward a more patient-centric model for FI management. This involves provider-guided and surgical interventions, as well as understanding and addressing the emotional and psychological dimensions of the condition. People with FI are actively participating in their care journey, and their experiences and insights are valued and incorporated into treatment plans. Addressing systemic barriers, from protracted wait times to lack of specialized continence services, may improve experience and outcomes. Streamlining care pathways and enhancing the accessibility of specialized services can ensure timely and effective care. Furthermore, people living with FI and health care providers emphasized how a cohesive approach to FI treatment and management necessitates collaboration across health care providers; a unified, interdisciplinary strategy for FI management and care can improve outcomes and experiences.
While this review offers insight into the experiences of individuals with FI, it is essential to approach its findings with a discerning lens when considering broader applications. The included literature was limited in identifying how the experience of FI varies across social identity characteristics such as age, gender, ethnicity, and comorbid conditions. Equity-deserving groups face heightened challenges based on broader societal patterns, such as transportation, time, and insurance issues. For instance, individuals from lower socio-economic backgrounds might struggle with FI treatment's direct and indirect costs such as transportation costs. Furthermore, given the potential high out-of-pocket expenses in jurisdictions where not all FI treatment options are included in universal insurance plans, those without provincial insurance plans might find it challenging to access specialized continence services and treatments. Cultural and linguistic barriers can further complicate the care-seeking journey for some equity-deserving communities. They might find it challenging to communicate their experiences or understand medical advice, especially if health care providers have not received cultural sensitivity training or translation services are not readily available. For some cultures, discussing bodily functions might be particularly taboo, amplifying the shame and guilt associated with FI. Individuals from these communities might also have unique coping mechanisms rooted in cultural practices that might not be captured in the broader narrative included in this review.
However, we cannot draw these conclusions directly from the included literature. While studies included participants from various equity-deserving groups, the findings did not explicitly explore their views and experiences in light of their social identity and contexts, limiting our understanding of the challenges of these groups. Furthermore, the single study on experiences with SNS did not report participants' basic social identity characteristics.21 Decision-makers and health care providers should consider their target population's social identities, context and demographics when extrapolating these findings. Tailoring interventions and policies based on diverse and unique needs and experiences will be crucial to ensure effective and culturally sensitive care.
Furthermore, targeted research on the experiences of equity-deserving communities with FI is needed. Such research will support health care providers and decision-makers to develop interventions and policies tailored to equity-deserving communities' unique challenges and needs.
accidental bowel leakage
Equity Checklist for Health Technology Assessment
fecal incontinence
percutaneous tibial nerve stimulation
Quality of Reporting Tool
sacral nerve stimulation
Contributors: Francesca Brundisini
Selection of Included Studies.
Note that this appendix has not been copy-edited.
Characteristics of Included Publications.
Note that this appendix has not been copy-edited.
Strengths and Limitations of Included Studies Using the QuaRT.
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