Barriers to seeking care for accidental bowel leakage: a qualitative study

Abstract

Introduction and hypothesis Fewer than 50 % of women with urinary incontinence (UI) and 30 % of women with accidental bowel leakage (ABL) seek care. We sought to describe barriers to care seeking for ABL to inform development of an instrument to measure these barriers. Methods We recruited women with ABL with varied prior care-seeking experiences to participate in focus groups and cognitive interviews so we could understand factors that may have prevented or delayed care seeking. Focus groups continued until thematic saturation was reached using conventional content analysis. Final themes were established and characterized by comparing within and across the focus groups and with previously described UI and ABL care-seeking barriers. Cognitive interviews were confirmatory. Results Thirty-nine women (aged 46–85) participated in six focus groups and ten cognitive interviews; 89 % were white, 8 % African American, and 3 % Latina. We identified 12 barriers to seeking care for ABL: (1) Lack of knowledge about the condition; (2) Lack of knowledge about treatment; (3) Fear of testing/treatment; (4) Normative thinking; (5) Avoidance/ denial; (6) Life impact; (7) Embarrassment/shame; (8) Self-blame; (9) Stigma; (10) Isolation; (11) Provider barriers; (12) Access limitations. These 12 barriers encompassed three overarching themes: the internalized self in relation to ABL; perceptions about ABL and its treatments; and interaction with the healthcare system. Conclusions ABL care-seeking barriers are similar to those described for UI, with the notable addition of lack of knowledge that ABL is a medical condition experienced by others. Interventions to promote access to effective treatments for ABL should include information about prevalence and treatability.

If We Don't Ask, They Won't Tell: Screening for Urinary and Fecal Incontinence by Primary Care Providers

“…While several studies to date have examined rates of and reasons for not seeking care for FI in patient populations, 15,20 this study is the first large survey to provide information about rates of and reasons for not screening for FI from the health care provider’s perspective. In the only other study in the English literature that queried physicians about screening for FI, 11/56 physicians responded, 9 of whom potentially provided primary care (8 geriatricians and 1 general internist), and the rate of screening for FI among those 9 physicians was 67%, which is significantly higher than the rate in our study of 35%, but somewhat comparable to the screening rate among geriatricians in our study.…”

“…20 Interestingly, almost 60% of patients who had not sought care for their FI in that study agreed with the statement that patients would prefer to use questionnaires or answer routine questions about FI. 20 In prior qualitative studies, women with FI describe written inquiry as a more comfortable way to broach an uncomfortable topic, 15 and women with dual incontinence seeking care are more likely to verbally disclose urinary than fecal symptoms. 22 Similarly, adults in Ireland are more likely to disclose the use of incontinence aids on an anonymous written survey than they are when asked in face-to-face interviews.…”

“…While as many as 50% of women with UI seek care, 15 estimated rates of care seeking for FI are lower and range from 10% to 30% with delays from onset of symptoms of 2 years on average for women and 3 years for men. 15–18 Screening by primary care providers (PCPs) has the potential to shorten this delay and improve access to effective treatments, but limited data exist about physician screening for these conditions. 19,20 We were able to identify only 1 existing study published in English that queried physicians about screening for FI, and that study included only 11 physicians.…”

Validation of an instrument to assess barriers to care-seeking for accidental bowel leakage in women: the BCABL questionnaire

“…Construct validity of the BCABL item pool was evaluated using focus groups with 29 women and cognitive interviews with 10 women, during which we identified 12 barriers to care-seeking for ABL, and generated and revised potential items for inclusion in the BCABL questionnaire [10]. A survey with a list of potential items was used as a discussion tool for each focus group and cognitive interview; it was revised in an iterative process, informed by our study participants, to reflect their lived experiences.…”

“…In previous qualitative work, our research team explored barriers that may prevent or delay care-seeking through focus groups and cognitive interviews among community dwelling women with ABL with varied earlier care-seeking experiences [10]. The purpose of the current study was to evaluate the validity and reliability of an instrument informed by this work: the Barriers to Care-Seeking for Accidental Bowel Leakage (BCABL) questionnaire.…”