Copyright © 2013 by the Wound, Ostomy and Continence Nurses Society™ J WOCN ■ November/December 2013 631 Copyright © 2013 Wound, Ostomy and Continence Nurses Society™. Unauthorized reproduction of this article is prohibited. J Wound Ostomy Continence Nurs. 2013;40(6):631-638. Published by Lippincott Williams & Wilkins CONTINENCE CARE Help-Seeking for Fecal Incontinence in People With Inflammatory Bowel Disease Christine Norton  Lesley Dibley PURPOSE: The purpose of this study was to enhance our understanding of factors that influence help-seeking in people with inflammatory bowel disease (IBD)–related fecal incontinence (FI), and their needs or desire for continence services. SUBJECTS AND SETTING: We conducted a survey of FI in community-dwelling people with IBD, all members of a United Kingdom IBD charity, and received 3264 responses. As part of the study, we asked 3 questions about help- seeking for IBD-related FI to which respondents were able to give free-text responses. We analyzed the responses to these help-seeking questions, continuing until data saturation when no new themes emerged (617 free text comments analyzed, 19% of total respondents). METHODS: For the full survey, a mixed-methods design was used to collect and analyze quantitative and qualitative data. Qualitative (free-text) responses relating to help-seeking behavior reported in this article were analyzed using a pragmatic thematic approach. RESULTS: Seventy-four percent of the total sample (2415 out of 3264 respondents) reported some degree of FI. Of these, only 38% (n = 927) reported seeking help for FI. In the data reported in this article (n = 617), only 13.5% reported seeking help for FI. Help was described as satisfactory, unsatisfactory, or alternative (acupuncture, counseling, hypnotherapy). Reasons for not seeking help included believing nothing could be done, not knowing who to ask, feeling too embarrassed, ashamed or dirty, and perceived lack of interest, sympathy, or understanding from health care professionals. Although respondents wanted to talk to “someone with specialist knowledge about incontinence” only 6 out of 617 (0.9%) reported awareness of specialist continence services. Standard treatments were rarely mentioned (n = 2). Respondents’ focus was on better management of FI rather than on cure. CONCLUSIONS: Many people with IBD-related FI are not aware of the services or treatments that are available to  Christine Norton, PhD, King’s College London, London, and Imperial College Healthcare NHS Trust the United Kingdom.  Lesley Dibley, MPhil, King’s College, London, the United Kingdom. Conflict of interest: none declared. Correspondence: Lesley Dibley, MPhil, Florence Nightingale School of Nursing & Midwifery, James Clerk Maxwell Bldg, 57 Waterloo Rd, London SE1 8WA, the United Kingdom (lesley.b.dibley@kcl.ac.uk). DOI: 10.1097/WON.0b013e3182a9a8b5 ■ Introduction Although bowel control is reported as a major concern by people with inflammatory bowel disease (IBD), 1 fecal in- continence (FI) remains a largely unvoiced symptom. 2 The prevalence of FI is 2.2% to 15% in community-dwelling adults without IBD. 3-6 There is evidence regarding help- seeking behavior for specific health problems, such as for irritable bowel syndrome 7 and among men generally, 8 but none was found that specifically addressed IBD-related FI. We conducted a mixed-methods survey that addressed the following aims: (1) to determine the prevalence of conti- nence problems and concerns in people with IBD, (2) to understand the experience of people with IBD and conti- nence-related issues, (3) to understand the help-seeking behaviors of people with IBD-related FI, and their needs or desire for continence services, and (4) to better understand how people with IBD and continence symptoms manage their problem. This article provides a brief description of help them manage this distressing problem, and most do not seek help, often due to embarrassment and lack of knowledge that help might be possible. Clinical staff could communicate their awareness for the potential for FI to occur by proactively asking about symptoms during clinic appointments to provide an opportunity for symptoms to be disclosed and described. KEY WORDS: fecal incontinence, inflammatory bowel disease, qualitative methodology, treatment seeking