Introduction
Fecal incontinence (FI) affects up to 8.3% of the population and may have physical, psychological and social consequences. Sadly, patient experiences remain under-explored and most symptom measures are based on clinical outcomes rather than key priorities or concerns of affected individuals. This study aimed to describe the lived experience of FI through review of published qualitative studies.

Methods
A systematic literature search of studies of patients with FI published between 2003-2023 was conducted across Medline, Embase, CINAHL and PsycINFO. Studies were included if they provided qualitative data on patient experiences of living with FI. Studies in children and those principally focused on experiences following stoma formation were excluded. Methodological quality was described using the Critical Appraisal Skills Programme (CASP) tool for qualitative studies. An inductive approach by 2 reviewers enabled identification of key concepts. Collaboration with a third reviewer then generated higher-order interpretations. Finally, a meta-ethnographic method was utilized to construct a comprehensive thematic framework of lived experiences of FI.

Results
Of the 3394 studies identified, 13 studies were included in this synthesis. All studies were judged to be of good quality. Six major themes were identified (figure 1): quality of life, adaptation, protection, wider environment, perception and healthcare experiences. The theme ‘Quality of Life’ reflected the impact of FI on mental health, physical health, social well-being and functional ability. ‘Adaptation’ encompassed behavioral changes, dietary modification, and adjustments to daily routine to manage FI. The theme ‘Protection’ comprised risk management strategies and symptom concealment. ‘Wider Environment’ described navigation of the professional and public environment. ‘Perception’ reflected the impact of FI on self-perception, as well as the perception of other people’s attitudes towards FI. Finally, ‘Healthcare Experiences’ reflected patient experiences of accessing care and interactions with clinical care teams.

Conclusion
This qualitative synthesis offers a novel patient-centric framework of the lived experiences of FI and provides insight into the breadth of factors contributing to the burden of this condition. Many factors identified in this review are not represented in current outcome measures, highlighting the need for new ways of holistically assessing and measuring the impact of FI on patient wellbeing.

Figure 1 - Diagram illustrating themes and subthemes of the lived experience of FI

Emma Carrington

Imperial College London

Appearances