Patient and Care Provider Perspectives on the Management of Fecal Incontinence: A Qualitative Rapid Review
Authors: Majid Umair , Spry Carolyn 
Published: November 2023

This rapid qualitative review included 13 studies aimed at collating evidence on the experiences and perspectives of people with fecal incontinence (FI) and their care providers on their care and management, with a particular focus on sacral nerve stimulation (SNS). Only 1 study focused on the perspectives and experiences of people living with FI specific to SNS.
Living with FI is an emotionally taxing experience, deeply affecting individuals' self-perception and daily activities. The symptoms vary, with some facing constant and others occasional leakage episodes, making daily life unpredictable and challenging. Emotional responses included anger, frustration, and despair, with some attributing FI to aging or genetics, while others were in denial. The societal stigma around FI, reinforced by popular culture, led to self-blame and isolation. The unpredictability of FI symptoms altered the daily lives and routines of those affected, making home a refuge. People with FI reported reduced participation in various activities, from travelling to physical exercises, and even affected intimacy for some. Yet, the experiences varied, with some feeling minimal impact on their relationships. For some, however, worsening symptoms made them dependent on others, especially when combined with other health issues. Additionally, FI led to other physical symptoms like urinary tract infections and sore skin.
FI is a challenging condition that necessitates practical and emotional coping strategies. Individuals with FI employed self-initiated lifestyle modifications, including dietary changes, pharmaceutical and practical measures to manage their symptoms, and treatments assessed and managed by a continence specialist or clinic, including provider-guided or surgical options. Diet was crucial for FI management, with individuals self-identifying and avoiding specific trigger foods, adjusting meal sizes and timings, or preparing their own meals to control ingredients. Lifestyle strategies included frequent toilet visits, using protective wear like diapers and maintaining genital hygiene. People with FI reported high acceptability and satisfaction with surgical treatments like sacral nerve stimulation (SNS) and percutaneous tibial nerve stimulation (PTNS). Benefits included, symptom relief, improved ability to defer defecation, heightened self-confidence, and better hygiene. They also reported disruptions to daily life, concerns of postoperative recovery after receiving SNS or PTNS, and side effects after PTNS. Providers’ recommendations around non-invasive treatments included increasing fibre intake, pelvic floor exercises, and maintaining a food diary to identify triggers. They also advocated for laxatives, antidiarrheal medications, enemas, and biofeedback, believing that most individuals with FI can benefit from these interventions. No studies discussed providers’ perspective on surgical treatments for FI.
The urgency to seek care grew as FI symptoms intensified and disrupted daily life. However, societal taboos and the inherent embarrassment of FI delayed or even deterred care-seeking. Another barrier was the lack of knowledge about FI and its treatments. People with FI also feared the treatment process, concerned about potential adverse outcomes or ineffective treatments. Some hoped their symptoms would spontaneously resolve. Negative experiences with health care providers further discouraged treatment-seeking. Access to treatment presented another challenge, with individuals with FI navigating a complex health care system, facing long wait times, and struggling with the perceived invisibility of continence services. Furthermore, from the perspectives of providers, some treatments were too intense for people with FI and required time commitment over multiple days, making it challenging for individuals facing logistical and financial barriers like transportation and treatment costs.
Managing FI presents challenges for health service organizations and health care providers. Staffing shortages in health care facilities strained optimal care delivery, though providers reported persevering despite these constraints. Time constraints further complicated FI care as well as the lack of interprofessional collaboration. FI guidelines were useful, offering a structured approach to care and improving outcomes. However, providers faced inefficient software and limited computer access, and some resisted using digital tools for FI management.
People with FI described positive experiences once they accessed treatment. They underscored the significance of compassionate health care providers, with specialized continence services often providing a more attuned and responsive environment. Motivational messaging from providers, comprehensive education about FI, and proactive discussions about the importance of diet were also essential. People with FI also reported positive experiences with surgical interventions like SNS and PTNS. However, timely access to these services remained crucial. People with FI advocated a person-centred approach, emphasizing quick referrals from primary care physicians and raising awareness about continence care and treatment. They valued care locations closer to home, with practical amenities like convenient parking.
Drawing on these findings, streamlining patient pathways and enhancing the accessibility of specialized services may help improve patient outcomes. Providers viewed logistical improvements like increased staffing, better washroom signage, resident education on FI, family education, dedicated care time, and a cautious approach to laxatives as means to improve patients’ and providers’ experiences.
Experiences of FI vary across social identities, such as age, gender, and ethnicity. Equity-deserving groups might face heightened challenges, including transportation, financial barriers, and cultural stigmas. While some studies included these groups, the findings were not disaggregated to highlight the specific challenges these groups faced. Tailored interventions based on unique needs and targeted research on equity-deserving communities are crucial for effective and culturally sensitive care.