Table 2.

Types of Responses to Having and Managing Fecal Incontinence

Theme of Response (Number of statements per theme/number of participants)	Example
Bothersome FI Symptoms/ Characteristics (55/32)  Subthemes   frequency of defecation or leaks   loose consistency   odor   flatus/gas   urgency   lack of complete elimination	[Subject} mentions that some days she will have a BM and will have to go and leaks approximately every 20 minutes for a couple of hours, unable to control. (Frequency) “The worst accident that I had was in Disney. We had gotten off the bus and I didn’t make it. I had stool on my shorts and running down my legs.” (Loose consistency) “I can smell myself and maybe other people can smell it too.” (Odor) “I feel bad for my husband, I have plenty of gas.” (Gas) “When I have the urge, I gotta go right now. They should have a support group.” (Urgency) “I’m so sorry I don’t have control when I go to the bathroom; it’s like I don’t finish. I can’t get it all out.” (Lack of complete elimination)
Feelings (53/43)  Subthemes  embarrassment  discomfort discussing FI with others  humor  minimization  undervalue self  guilt/shame  isolation  helplessness  frustration/distress  problem is very significant to them  worry	She said she’s been dealing with this problem for 10 years … She only told her MD this year, because she was embarrassed. (Embarrassment) Subject is not comfortable talking about his bowel pattern or leakage. He does not have good eye contact and says he is having a hard time with discussing these. (Discomfort discussing FI with others) “This is not something you talk about with anyone except a data collector on a fiber study.” (Discomfort discussing FI with others) Was joking around during visit; told me that he can only buy cars with leather interiors and no one understands why but it’s due to FI. (Humor) “I have a good sense of humor. Gas is “ick” for other people -- not me! I enjoy good gas. I’m looking forward to this.” (Humor) Minimized his problem, was embarrassed to talk about it and tell me how bad it was. (Minimization) [Being in study] “I realized having incontinence was not my fault.” (Guilt/shame) “I feel like there is something wrong with me” (Undervalue Self) He says I am the only person he can tell these things to. (Isolation) Feels that her problem is somewhat manageable now but what if it gets worse? How will she live as an older adult? She was crying on the way home and felt so helpless to control the problem. (Helplessness) Had gone to see couple of MDs concerning it but has had no luck or answers … this problem is really an issue for him. He is desperate for a solution. (Frustration/Distress) “I’ve had major things happen in my life but when it comes to this, I can’t think of anything that affects me more physically and emotionally. I sometimes lose my edge about this.” (Problem is significant) “Sometimes I pass gas and start to worry.” (Worry)
Need for Control (33/32)	“Most of the time I make it to the bathroom. I know where they are, but I have to go and there’s no bathroom, I can’t control.” Wants to control FI when doing activities such as golfing, state fair, etc.
Reduced or Impaired Socialization (15/14)	“I never would use trains/planes or anything where I didn’t know where the bathroom would be available.” “Because of the leaks, we haven’t had sex.” Subject shared that she had been fairly house bound before the study and had good results allowing her to go out more and engage in social activities.
Self-Reliance/Self-Care (13/13)	“I rarely bother my doctor with problems but I did tell him about my leakage once. I solved the problem myself and I wear a little pad every day I go out.” Subject uses ‘chucks’, fans them out under her pants in case of big accidents.
Quality of Life (4/4)	“I have 3 children, 2 teenagers and one 10 year old. You could leak anything else from anywhere and they wouldn’t care, but not this. I’m glad you are looking at quality of life.”
Benefits of and Positive Feelings from Participating in a Research Study (35/32)	“I’m excited about the study. I’m gonna find out a lot.” “I’m doing this for the sake of research to help people with my problem.” “Now I’m getting to help myself by being in my study. My husband told me I’m contributing to science but I’m a little selfish, I want to help myself. I’m also glad I might be helping others with this problem. This study is so important.”

^*Statements in quotation marks indicate subjects’ verbatim statements that were recorded in field notes.

Others are notes of the data collectors.