Table 4

Key themes identified from stakeholder workshop

ThemeNumber of occurrencesIllustrative quotes
Education (of healthcare professionals, patients, parents and carers)39“There are so many clinicians I came across that just label it IBS it seems easy to call it IBS I had to say to my GPs I have no IBS symptoms at all other than urgency, I have nothing, I’ve never suffered with it, and they’d just look at me and say oh I don’t know then.”—Person with FI
“Primary physicians are not screening for urinary incontinence (or FI), and therefore the patients aren’t even getting the questions asked of them about whether FI is a problem. This may be because of poor education in medical schools, if not now, 30 years ago and therefore there are problems even opening the conversation with patients or where to send people, particularly in rural communities or for diagnostic tests in low-income countries, or in areas which require insurance for treatment plans.”—HCP
“It is common for parents of young children who are soiling to be told it is a toilet training issue when it is not at all, and it needs to be identified and recognised from that really early age.” - Parent of a child with constipation and FI
Impact and burden of living with FI26Prioritisation in healthcare systems: “If you can’t show the impact it has in dollars and cents it is probably not going to get much prioritisation, that’s what we have to build on.”— HCP
“(It impacts] all aspects of life, social life, how you can get out and be physically active, how to remain an active member of the community, whether you can engage in hobbies that you like, the financial side of things (increases cost of living) etc.”—Person with FI
Psychological support20“I became so stressed and distressed I felt I couldn’t live with this anymore. I went back to the doctor and said how I actually felt and from then on got a referral… even so there has been absolutely no form of psychological support of any sort from anybody.”—Person with FI
“It’s really quite difficult because we don’t have training in psychology and counselling skills only very few bowel tertiary centres in [city in UK] actually employ a psychologist as part of the team.”—HCP
“We had to pretend someone had a different condition to get them psychological support.”—HCP
Healthcare service improvements and inconsistencies19“The typical GP appointment is only 10 minutes if you don’t get straight in there and explain just how difficult this is, just how much you struggle then you just get a box of loperamide…Having more time whether that’s through specialist areas or a much quicker referral.”—Person with FI
“One of the most common issues was that when patients came in [to hospital], they were automatically given pads and then the incontinence was cited later as the main reason why people were going to care homes when it wasn’t the reason they were admitted in the first place.”—Physiotherapist
Stigma19“Bowel dysfunction taboo subject in nearly all cultures, like what urinary incontinence was 10 or 12 years ago. Need to educate people and talk about it and open up the discussion…”—HCP
“You are not expected to be a functional adult walking about and not be able to control yourself.”—Person with FI
Treatments and management17“When you use medication at what point and at what stage do you use it? For example, at what stage do we use psyllium over loperamide? The evidence for recommendations is lacking in these types of questions.”—HCP
The need for a personalised approach: “Different people benefit from different treatments. It’s unhelpful to say there are no treatments. Most people can get some improvement in some aspects (eg, lifestyle, drugs, psychological support, nerve stimulation, PFMT).”—HCP
Cultural management9Better education about the body and the bowel: People didn't have the language to express their problems, or to describe what was going on, they didn't feel in the past that had ever really been properly listened to and so they weren't confident to talk about their problem.”—HCP
“What management aspects constitute 'lifestyle' in mid to low-income countries? We have to think about religious practices such as time spent praying, quality of toilets and how this leads to toileting practices that causes chronic constipation with overflow.”—HCP
Technology and accessibility (apps, products, facilities, communication platforms)5Improvements are needed in containment technology: “Pads for urinary incontinence have improved (more absorbency etc.), but management products for FI are still limited. Could technology be improved?”—HCP
“Planning a journey, particularly in an unfamiliar place, as it’s important to know the location of toilets etc. Need to plan ahead (sister who has Parkinson’s has a card saying, ‘just can't wait’ which she is supposed to give to shops etc. when she is desperate).” The patient also has a radar key which has been a “godsend in lockdown’ when toilets have been closed in lockdown.—Person with FI
  • FI, faecal incontinence; HCP, healthcare professional.