Living with faecal incontinence: a 10-year follow-up study Mary Wilson
Key words: Follow-up studies ■ Defaecation ■ Social support ■ Quality of life
F
aecal incontinence (FI) is defined as the uncontrolled loss of solid or liquid stool or mucus, while anal incontinence includes the involuntary loss of flatus. When a sample of non-institutionalised US adults was asked about accidental bowel leakage within the previous month, 7.7% of men and 8.9% of women had experienced FI, while anal incontinence had occurred in 51% of men and 46.2% of women (Whitehead et al, 2009). FI is a taboo subject and those living with it can feel stigmatised. Although defaecation is a universal physical act, it is associated with social complexities, ‘… a fecal smell remains for others to experience; fecal matter adheres to the body or ends up in one’s clothing; fecal efforts can be overheard; flatulence can be heard and/or smelled’ (Weinberg and Williams, 2005:231). The author conducted a 10-year qualitative follow-up to an initial constructivist grounded theory project, investigating living with FI from the original sample of 22 communitydwelling adults (Wilson, 2007). A qualitative 5-year follow-up was also carried out and 11 of the original sample participated (Wilson, 2013). Each study aimed to seek the subjective meaning of living with FI: the ‘insider’s’ perspective—a term used by Thorne and Patterson (1998) to indicate an insight of what it means to live with chronic illness for those with the condition.
Research methods, initial study Sampling Nine individuals were selected using multivariational sampling, aiming to include a wide range of causes of FI. Multi-variational sampling allowed the researchers to develop a broad understanding of a wide range of causes of FI in both men and women. Researchers excluded those too confused, or with too severe a learning difficulty, to provide a coherent interview, and those with neurodegenerative conditions, who may have exhibited a decline in health unrelated to FI. Theoretical sampling commenced after nine participants had been selected by multivariational sampling, and was then used to fill the gaps in the data and develop the categories. When this was achieved (indicative that data saturation had been reached), sampling was ceased, resulting in a sample of 22 participants. This was made up of 10 men and 12 women; one man was involved in piloting the initial topic guide, seven individuals were referred by, and then contacted through nurses, four were selected as suitable from a database and also contacted by nurses and a further ten selfnominated following local publicity.
Ethical considerations Local Research Ethics Committee (LREC) approval was gained by the author before each study (the initial study, 5-year follow-up and 10-year follow-up) started.
Mary Wilson, retired Nurse Practitioner for Bladder and Bowel Health, Humber NHS Foundation Trust
Initial study: data collection May 2002–September 2003
Accepted for publication: December 2014
Data were collected using semi-structured, guided interviews, which took place at the
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Findings The framework charts on which the codes were entered brought together similar findings; categories were identified when constant comparative analysis identified patterns and interrelationships within the data (Glaser, 2002). The researchers used the term ‘group’ to indicate the categories of participants whose stage in adaptation to living with FI was comparable and ‘theme’ (see Table 1) to indicate categories representing different aspects of adaptation. The core category ‘adaptation’ brought together all the categories. The researchers identified five themes representing relevant aspects of adaptation. As the participants’ expression of the themes varied, adaptation was plotted on a dynamic continuum, spanning a negative to a positive pole, along which movement could be either way. However, individuals with similar characteristics formed three groups along the continuum.
The impact of and response to FI Five individuals, who were given the overall description ‘overwhelmed’ by FI, congregated towards the negative pole, comprising those who were either new to living with FI or had unremitting symptoms. Typically, the impact
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Abstract
Faecal incontinence (FI) is a taboo subject, and people living with it can feel stigmatised. This article reports on a 10-year qualitative follow-up to an initial constructivist-grounded theory project, investigating living with FI. This article will also look back at the initial study and the 5-year follow-up study undertaken. The research examines the challenges associated with living with FI and different ways of managing the condition, including the importance of social support.
participants’ homes, or, if they requested, at an alternative venue of their choosing. The spouses/partners were not formally invited, but one wife was present when her husband was interviewed, contributing infrequently, and two wives joined the interview after the start, but did not contribute. The majority of references to partners’ views were as reported by the participants. The interviews were recorded with the participants’ permission, apart from one woman, who preferred that the interviewer took notes. The recordings were transcribed, numerical coding indices placed in the transcript margins and thematic framework charts were constructed, allowing constant comparative analysis within and between transcripts.
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Table 1. Interdependent themes arising from the initial study Theme
Explanation
1 Impact of FI on self
Self-esteem, confidence, mood, feelings of control of the situation, social acceptability, attitude to FI
2 Response to impact of FI on lifestyle
To the occurrence of FI, ‘ownership’ of FI, adaptations made and responsibility for progress in self-management
3 Interaction
With ‘significant others’, the generalised other (those in the public domain of the individual) and with others who have FI (‘insiders’)
4 Direction in life
Upwards (positive narrative), downwards (negative narrative) or level progress
5 Quality of interaction with health professionals Source: Wilson, 2013
Dynamic continuum to
positive
Overwhelmed to mastery x
Theme 1: Attitudes/feelings about self
x
Theme 2: Responses to impact of FI Theme 3: Interaction
x
with significant others with the generalised other
Theme 5: Interaction with health professionals
x x
Interaction
x suggests position on continuum; not to scale Figure 1. Hypothetical positions, in which a participant expresses some interdependent themes more positively than others (Wilson, 2013)
of FI had reduced their self-esteem, selfconfidence and feelings of social acceptability. They experienced a low mood and used forceful language, describing life with FI as ‘horrendous’, ‘dreadful’, ‘black days’ and said that they ‘shed a million tears’. They reconstructed life before FI as a ‘golden past’, typifying a negative, downward narrative under the direction of life theme. A total of 11 of the participants, displaying different levels of adaptation and progression, were ‘approaching mastery’.Typically, members of this group exemplified an upward ‘direction of life’, displaying a more positive mood and self-concept. They had milder symptoms, either as a result of their clinical condition or their control strategies, having lived with FI for longer, although three in particular could remember having been ‘overwhelmed’. Six participants, positioned between the poles, and labelled ‘accommodating to FI’, were stoically resigned to living with FI and, remaining static, typified a level ‘direction of life’. Displaying higher comorbidity, they often looked to health professionals for solutions. Not experiencing relentless symptoms characterising the ‘overwhelmed’ participants, they organised their lives within personal
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comfort zones in time and place; they were reluctant to risk FI in public, so avoided going out at times of the day when FI was more likely to occur, and avoided places where they were unsure of toilet provision or that were further from home. The only participant who was interviewed twice was included in this group;he demonstrated progression from being ‘overwhelmed’ moving towards ‘accommodating’. There had been insufficient time to carry out more than one interview with each participant. Excluding the interview to pilot the topic guide, this man (who was interviewed twice) was the first to be interviewed, and demonstrated his enthusiasm to contribute to the project. As there was sufficient time to re-interview one individual, and the researchers agreed that he should be approached, his second interview, the penultimate interview of the initial study, took place 17 months after his initial interview. As none of the participants expressed each theme uniformly, to avoid forcing them into inappropriate groups, the researchers allowed for this and acknowledged variation (see Figure 1); the overall grouping was flexible
Significant others (SOs), particularly longterm partners but also children and close friends/confidants, assisted adaptation, becoming ‘honorary insiders’. While not experiencing FI first-hand, they developed empathic understanding and were accepted by the ‘insiders’ with whom they interacted. The majority had been SOs before the onset of FI. The SOs of those ‘overwhelmed’ provided both psychological and physical support, although ‘overwhelmed’ participants reciprocated little. However, those participants who were ‘approaching mastery’, having become more proactive, developed coping strategies within which their SOs often played a part. Some 10 participants had partners who provided significant support, two had understanding partners who were less involved, four did not involve their partners and six had no partner. Some who were new to living with FI were unaccustomed to discussing it with health professionals, finding it embarrassing, especially if consulting a health professional of the opposite gender, although this became easier with time.
Methods For each follow-up study, data were collected and constant comparative analysis was carried out within and between the transcripts of the study being undertaken and also with previous data sets.
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Negative
and dynamic but individuals were largely typified by the characteristics of one of three descriptions. The practical responses of the participants to FI varied and depended on their level of adaptation. The majority had used bowelrelated medication with varying degrees of success. For example, one man ‘approaching mastery’ had devised an effective regime of antidiarrhoeals and laxatives, while two women, ‘overwhelmed’ by FI, did not use antidiarrhoeals, although they were aware of their potential benefit. Only five participants had Royal Association for Disability and Rehabilitation (Radar) National Key Scheme keys to give them access to toilets for disabled people. FI is a condition that is hidden unless it either occurs or is mentioned; participants were unlikely to disclose their FI in order to discover what could help their adaptation, and unaware that they could still qualify for a key. Similarly, only four, one of whom also had a key, had Can’t Wait Cards, that they could use to indicate the urgent need of using a toilet.
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CONTINENCE 5-year follow-up: data collection December 2007–January 2009 The sample comprised five men and six women; one man and three women involved in the initial study had died, one man and one woman were too unwell to participate; the man who had been involved in piloting the topic guide and another who had moved away were ineligible, living out of the area covered by the LREC, and one man and two women did not respond to their invitations to take part in the follow-up study. Although the changes in the number of participants meant the average age was greater than five additional years beyond the initial study and the proportion of self-nominated participants was greater, the sample was comparable to the initial sample regarding the multi-variational quality of the sample and the gender balance.
Findings
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Of the 11 participants, 4 men and 4 women had been judged to be ‘approaching mastery’ in the initial study. While seven described adaptation and resilience allowing them to achieve goals previously rendered impossible, one man, with deteriorating health, had accepted the need to downgrade former aspirations. Severe back problems had put his FI into perspective and he was living with it, along with other chronic conditions. A woman, judged as ‘overwhelmed’ in the initial study, had progressed to ‘approaching mastery’; through trial and error she had developed strategies, including the use of antidiarrhoeals, enabling her to become sufficiently confident to travel the world with her partner. A man who had been ‘overwhelmed’ had progressed to a static comfort zone, ‘accommodating’ to FI. However, the youngest participant, although demonstrating progress in interaction about FI with SOs, the ‘generalised other’ and, particularly with health professionals, overall, continued to be ‘overwhelmed’. Long-term partners in particular continued to support adaptation; the man who had progressed to ‘accommodating’ had reunited with his wife, who joined him for the interview, contributing minimally, but their interaction reflected mutual support. The participant who remained largely ‘overwhelmed’ had no partner, received family support, but had little social interaction beyond this.
10-year follow-up: data collection April 2012–October 2012 A total of three men and six women participated. As those unable to participate (there were 11 participants in the 5-year
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follow-up study) were both male (the participant who had reunited with his wife had moved out of the area and the man who had previously downgraded his aspirations had hoped to be involved but, owing to failing health, was unable to take part). This resulted in a gender imbalance, although the age range, original referral source and clinical background remained comparable to the previous study. The three men available for the 10-year follow-up spanned an age range from 66 to 79 years; those unable to take part had ages between the youngest and oldest. One had a history of colitis and partial colectomy, but another male participant who was taking part also had a history of partial colectomy. The other man unable to participate had Crohn’s disease, but this was also represented by another male participant. However, an important previous finding was that this man, now unable to participate, had progressed from being ‘overwhelmed’ to ‘accommodating’ to FI; he would have provided valuable follow-up data regarding his subsequent adaptation, but his absence from the sample was an insufficient reason to abandon the 10-year follow-up. Of the ten participants in the initial study who had self-nominated, six joined the 10-year follow-up study, their commitment possibly implying an enthusiasm to continue with the study, again affecting the sample. All were ‘approaching mastery’ by the 10-year follow-up study, except one woman who overall remained ‘overwhelmed’ but was now considered ‘accommodating’ to FI. Table 2 shows a comparison between participants’ perspectives in the initial study and the 10-year follow-up.
as she felt able to cope, she had not enquired regarding the possibility of further surgery. These participants had continued, through trial and error, to develop and refine diverse individual lifestyle, dietary or medicinal strategies. Knowledge of Radar keys and Can’t Wait Cards was universal but their use depended on lifestyle requirements. Although FI in public was still avoided and viewed negatively, as time passed it posed less of a threat to those ‘approaching mastery’ and they had incorporated its possibility into their lives. In contrast to their previous fastidious compliance with practices to reduce its possibility, participants now confessed to eating all the food provided in a restaurant because it had been paid for, missing antidiarrhoeal medication before eating out or ignoring toilet urgency while otherwise occupied:
Findings Impact and response to FI
In contrast with the initial study, when FI was taboo and rarely mentioned outside the confines of SOs, participants felt less inhibited, although if it was mentioned it was usually when talking to people who were already aware of their bowel conditions. Generally, FI was not mentioned, not because it was taboo but simply because it was not considered to be part of acceptable conversation. Participants did not want their stools to cause unpleasantness to others, taking measures to avoid them seeing, smelling or having to clean away/dispose of their faeces. However, faecal or flatal odour was treated with humour, particularly if SOs were present, to dissipate any embarrassment. In the initial study, a woman acutely embarrassed and negative about her offensive stools, endeavouring to avoid leaving an odour in
None of the participants anticipated a cure and accepted their FI symptoms, sometimes grudgingly, even when deteriorating. Two participants had been offered surgery; one refused, basing this decision on her current pe gender rspective that she had learned to cope. The other had a potentially effective sacral nerve stimulation device removed following infection; the surgeon had voiced his intention of replacing it, but when he did not make further contact, the participant did not pursue the matter. A third participant who had previously undergone rectocele (a bulging of the front wall of the rectum into the back wall of the vagina (American Society of Colon and Rectal Surgeons, 2015)) surgery had become aware of the return of her rectocele. However,
‘If I’m watching telly and I’ve got maybe a bit engrossed in my soaps, I think “I’ll go in a minute” and by the time I have gone, I haven’t made it to the bathroom.’(Female, aged 59) The participant, who in the previous studies remained ‘overwhelmed’, was struggling with poor mobility and comorbidity; she expressed how her illnesses and incontinence ‘take over’. Since her regular GP had left, she missed being able to discuss symptom management with the same doctor; this included her irritable bowel syndrome medication, that she felt had been overlooked, although she had not mentioned it herself. However, she had become accustomed to using antidiarrhoeals, which proved effective.
Interaction with the ‘generalised other’
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Table 2. Comparison between initial study and 10-year follow-up study participants Initial study Source
Informant’s assessment: cause of FI
Informant’s perspective: life with FI
Overall group
10-year follow-up study Informant’s perspective: relevant treatment
Informant’s perspective: life with FI
Overall group
Female, 59
Nurse referral
Childbirth, badly stitched
‘I used to sit and cry and think “why me?”, it only happens to old people.’
AM (O in past)
Refused sacral nerve stimulation (SNS), but may reconsider in future
Can live with FI at the moment; spouse/family supportive
AM
Male, 75
Selfnominated
Crohn’s disease ‘out of the blue’ (attributed symptoms to work-stress)
Angry about having to retire early, disliked food restrictions
AM
Bowel function improved since last surgery; ‘glue’ used instead of sutures
Can eat a wider variety of foods; fewer problems with hard/soft stools; spouse supportive
AM
Male, 66
Nurse referral
Adverse result following spinal injury surgery
Remembers onset as ‘black AM (O, days’ when there were A in ‘a million tears shed’ past)
SNS performed, seemed effective, but recurrent infection, device removed
Bowel, bladder, mobility problems; adapted, using trial and error; supportive spouse
AM
Female, 57
Selfnominated
Childbirth, surgery, irritable bowel syndrome (IBS)
‘It gets you very depressed and it tends to make you a bit reclusive … at my age I shouldn’t think, “Oh well, I’ll sit in”’
O
Poor mobility, diabetic diet helping bowels, mebeverine discontinued when diabetes medication commenced, has IBS symptoms, no regular GP to discuss concerns with
Aims to improve overall health for own quality of life, and to look after young relative
A
Female, 70
Selfnominated
Liquid stools, urgency after eating, pain from eating certain foods; pelvic floor weakness
‘I’ve come into the office crying because I’ve been so floored that all this has happened. It’s so distressing’
O
Hip problems affecting mobility; urgency after eating, more severe
Increased self-confidence; self-management: loperamide, food exclusion, toilets for disabled people, odour neutraliser spray; partner supportive
AM
Female, 75
Selfnominated
Before rectocele surgery, loose stools, FI when asleep; post-surgery, urgency, loose stools (IBS?)
‘When I know I’ve gotta go, then it becomes a panic station’; obtained book on IBS, commenced food diary
AM
Suspects rectocele has returned. Decided against further surgery, suspects loose stools are food- and stress-related
Intermittent recurrence of loose stools; confident in coping (trial and error, food exclusion); spouse supportive, but participant took on caring responsibilities when he became ill
AM
Female, 71
Selfnominated
Intermittent diarrhoea, FI, diagnosed diverticulitis
‘I thought, “With that smell, they would smell it, standing near you and that would be offensive to them” … I’d think, “I feel terrible”’
AM
Health issues affecting mobility; sought advice for constipation
Balances stool consistency by diet. Believes stress management also helps; spouse supportive, but participant took on caring responsibilities when he became ill
AM
Male, 79
Selfnominated
FI after bowel cancer surgery, frequency, loose stools
‘I’ve learnt to live with it. There are times when I get annoyed … so it does control your life, as well as you controlling it’
AM
Hospital admission for abdominal pain/distension, no treatment necessary
Bowel frequency, day/ night, but able to nap by day; food trial and error ineffective; severe anal soreness; spouse supportive
AM
Female, 65
Database, contacted through nurse
FI after breaking neck, usually occurs if requiring manual removal of faeces
Nurses performed bowel care, carers get her up, put her to bed, friends stay during the night, but sleep; she is happy with this routine
AM
Period of low mood, poor appetite, was treated, improved; stopped taking stool softeners, preferring faeces to be hard
Following ‘low’ period, started going out, choosing supermarket/ clothing purchases, attaining a higher level of rehabilitation/quality of life than before recent disruption
AM
* Age at 10–year follow-up O=overwhelmed A=accommodating AM=approaching mastery
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Gender, age*
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CONTINENCE
KEY POINTS n Individuals with faecal incontinence (FI) may avoid discussing their condition and it may be necessary to ask them about it in order to ascertain whether assistance would be beneficial n Non-medical items, including Can’t Wait Cards and Radar keys (for access to toilets for disabled people), may assist adaptation to living with FI n Concealment of FI may prevent individuals locating other ‘insiders’ (people with FI) for support. Interaction between insiders may be greater if there are also other common characteristics, such as age and gender n Partners can play an important part in supporting people with FI
public toilets, remained seated while flushing the toilet three times. She now viewed her routine light-heartedly: ‘We were on a ship … I thought, “ooh dear, I’ll flush it” and of course, it’s [laughs] a suction one and I gave out a tremendous scream, I thought I was going to go down the toilet.’ (Female, aged 70)
Interaction with significant others Seven participants had a partner and described their empathic support in living with FI; two men used ‘we’ in relation to teamwork with their wives. Two women, one experiencing comorbidity, who were accustomed to their husbands’ caring for them, became carers themselves, when their husbands became ill, now reciprocating their care. The associated stress exacerbated their bowel dysfunction, but they demonstrated self-efficacy and managed the role reversal. The participant without a partner, coping alone with comorbidity and showing little progression, had recently become involved in looking after a young relative. This motivated her to be more proactive, demonstrating selfefficacy. She listed recent life adjustments, some of which she had already made and others that she had commenced recently, as she progressed in her adaptation: ‘I suppose my goal is to keep myself healthier … while [he’s] growing up.’ (Female, aged 57)
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Interaction with ‘insiders’ No participants who previously described ‘insider’ interaction were represented in this 10-year follow-up study. Interestingly, those who now participated in ‘insider’ interaction, found it was facilitated not only by shared experiences of FI, but also by common characteristics, e.g. gender and age. While a woman found that two younger,
British Journal of Nursing, 2015, Vol 24, No 5
male ‘insiders’, linked by family ties, didn’t talk about their bowels (to her), a female neighbour, whose bowel dysfunction she was aware of, telephoned her for advice before they went on a coach trip together. However, when another participant gave advice to a female acquaintance about a bowel problem that they had discussed previously, she acknowledged that the woman was ‘quite a bit older’ than she was, inferring that the interaction would have been easier if they had been of a similar age. This participant, if aware of faecal odour in a public toilet, experienced not revulsion but ‘insider’ empathy, asking herself: ‘I wonder if it’s somebody with my problem?’(Female, aged 70) This contrasted with the findings of the initial study, when many of the participants voiced the despair they felt at the onset of FI, that they alone were living with the condition.
Discussion Adaptation: living with FI and comorbidity After more than 10 years, some participants had improved, while others had learnt to cope with FI. One woman, who was the youngest participant, without partner support and experiencing a high level of comorbidity, had remained static. Bayliss et al (2003) examined the barriers to self-care by those with comorbid chronic illnesses, listing many problems that this participant had also identified, including the compound effects of conditions, physical limitations (including mobility), medication problems from polypharmacy, low self-efficacy or sense of loss of control, the emotional impact of conditions and the need for social support (which she lacked). Unlike other participants with comorbidity, she coped alone; her lack of progress impacting only on herself and she did not have the incentive to reciprocate
a partner’s contribution with proactivity (Lewis et al, 2006). However, her intention to look after her young relative became a turning point, providing her with the incentive to become healthier and she gender demonstrated self-efficacy and progression. Agreeing to look after her relative represented extrinsic motivation, initially externally motivated to serve a particular goal, but by identifying this as having personal importance, she integrated it into her own goals (Gaine and La Guardia, 2009).
Supporting partners Participants described the support received from their partners as ‘teamwork’. Lewis et al (2006) discussed interdependence; when couples engaged in communal coping, they held a shared assessment of a health threat and a joint solution of dealing with it, expressing reciprocity. The 10-year followup study identified an interchangeability, dependent on each partner’s health; two women shifted from being cared for to caring, demonstrating reciprocity and selfefficacy as they rose to the challenge.
‘Insiders’ and homophily As their confidence increased, participants felt able to advise other ‘insiders’, and this was more likely when they had other variables in common. Homophily is the term given to principle that ‘like attracts’. Mark (2003) describes sociodemographic characteristics, as defining positions in a multidimensional ‘social space’, where, for example, age and education define a two-dimensional ‘social space’; those of comparable age and education are located close together. Participants felt more comfortable interacting with other ‘insiders’ when they shared ‘social space’. When Chelvanayagam and Norton (2000) investigated quality of life of people with FI using focus groups, they aimed to make these groups homogeneous by inviting only women experiencing long-standing FI who had failed to respond to treatment. According to researchers, little prompting was required to initiate conversation, although the women were strangers and the topic taboo.
Conclusion After 10 or more years of living with FI, comorbidity and ageing posed further challenges to adaptation and FI was not always the dominant issue. By using past experience and refining by trial and error, adaptation was ongoing, allowing participants
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to identify new self-management strategies, and sometimes relax compliance to others that previously had been adhered to rigidly. Fresh challenges provided motivation and stimulated self-efficacy. SOs, particularly partners, continued to be central to achieving adaptation. Outside the comfort zone provided by SOs or health professionals, participants usually restricted FI-related interaction to other ‘insiders’, especially when facilitated by further similarities or others who were aware of their condition, but otherwise did not consider it to be an BJN acceptable topic of conversation.
Conflict of interest: none American Society of Colon and Rectal Surgeons (2015) Rectocele Expanded Information. http://tinyurl.com/ oaeqwue (accessed 23 February 2015) Bayliss EA, Steiner JF, Fernald DH, Crane LA, Main DS (2003) Descriptions of barriers to self-care by persons with comorbid chronic diseases. Ann Fam Med 1(1): 15–21. doi: 10.1370/afm.4 Chelvanayagam S, Norton C (2000) Quality of life with faecal continence problems. Nurs Times 96(31Suppl): 15-7 Gaine GS, La Guardia JG (2009) The unique contributions of motivations to maintain a relationship and motivations toward relational activities to relationship well-being. Motiv Emot 33: 184-202 Glaser BG (2002) Conceptualization: on theory and theorizing using grounded theory. Int J Qual Methods 1(2): 23-38 Lewis MA, McBride CM, Pollak KI, Puleo E, Butterfield
RM, Emmons KM (2006) Understanding health behavior change among couples: an interdependence and communal coping approach. Soc Sci Med 62(6): 1369–80 Mark N (2003) Culture and competition: homophily and distancing explanations for cultural niches. Am Sociol Rev 68(3): 319–44 Thorne S, Paterson B (1998). Shifting images of chronic illness. Journal of Nursing Scholarship 30(2): 173-8 Weinberg MS, Williams CJ (2005) Fecal matters: habitus, embodiments, and deviance. Social Problems 52(3): 315-36 Whitehead WE, Borrud L, Goode PS et al (2009) Fecal incontinence in US adults: epidemiology and risk factors. Gastroenterology 137(2): 512–7, 517.e1–2 Wilson M (2007) The impact of faecal incontinence on the quality of life. Br J Nurs 16(4): 204–6 Wilson M (2013) Living with faecal incontinence: followup to a research project. Br J Nurs 22(3): 147–50, 152–4
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Key words: Follow-up studies ■ Defaecation ■ Social support ■ Quality of life
F
aecal incontinence (FI) is defined as the uncontrolled loss of solid or liquid stool or mucus, while anal incontinence includes the involuntary loss of flatus. When a sample of non-institutionalised US adults was asked about accidental bowel leakage within the previous month, 7.7% of men and 8.9% of women had experienced FI, while anal incontinence had occurred in 51% of men and 46.2% of women (Whitehead et al, 2009). FI is a taboo subject and those living with it can feel stigmatised. Although defaecation is a universal physical act, it is associated with social complexities, ‘… a fecal smell remains for others to experience; fecal matter adheres to the body or ends up in one’s clothing; fecal efforts can be overheard; flatulence can be heard and/or smelled’ (Weinberg and Williams, 2005:231). The author conducted a 10-year qualitative follow-up to an initial constructivist grounded theory project, investigating living with FI from the original sample of 22 communitydwelling adults (Wilson, 2007). A qualitative 5-year follow-up was also carried out and 11 of the original sample participated (Wilson, 2013). Each study aimed to seek the subjective meaning of living with FI: the ‘insider’s’ perspective—a term used by Thorne and Patterson (1998) to indicate an insight of what it means to live with chronic illness for those with the condition.
Research methods, initial study Sampling Nine individuals were selected using multivariational sampling, aiming to include a wide range of causes of FI. Multi-variational sampling allowed the researchers to develop a broad understanding of a wide range of causes of FI in both men and women. Researchers excluded those too confused, or with too severe a learning difficulty, to provide a coherent interview, and those with neurodegenerative conditions, who may have exhibited a decline in health unrelated to FI. Theoretical sampling commenced after nine participants had been selected by multivariational sampling, and was then used to fill the gaps in the data and develop the categories. When this was achieved (indicative that data saturation had been reached), sampling was ceased, resulting in a sample of 22 participants. This was made up of 10 men and 12 women; one man was involved in piloting the initial topic guide, seven individuals were referred by, and then contacted through nurses, four were selected as suitable from a database and also contacted by nurses and a further ten selfnominated following local publicity.
Ethical considerations Local Research Ethics Committee (LREC) approval was gained by the author before each study (the initial study, 5-year follow-up and 10-year follow-up) started.
Mary Wilson, retired Nurse Practitioner for Bladder and Bowel Health, Humber NHS Foundation Trust
Initial study: data collection May 2002–September 2003
Accepted for publication: December 2014
Data were collected using semi-structured, guided interviews, which took place at the
268
Findings The framework charts on which the codes were entered brought together similar findings; categories were identified when constant comparative analysis identified patterns and interrelationships within the data (Glaser, 2002). The researchers used the term ‘group’ to indicate the categories of participants whose stage in adaptation to living with FI was comparable and ‘theme’ (see Table 1) to indicate categories representing different aspects of adaptation. The core category ‘adaptation’ brought together all the categories. The researchers identified five themes representing relevant aspects of adaptation. As the participants’ expression of the themes varied, adaptation was plotted on a dynamic continuum, spanning a negative to a positive pole, along which movement could be either way. However, individuals with similar characteristics formed three groups along the continuum.
The impact of and response to FI Five individuals, who were given the overall description ‘overwhelmed’ by FI, congregated towards the negative pole, comprising those who were either new to living with FI or had unremitting symptoms. Typically, the impact
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Abstract
Faecal incontinence (FI) is a taboo subject, and people living with it can feel stigmatised. This article reports on a 10-year qualitative follow-up to an initial constructivist-grounded theory project, investigating living with FI. This article will also look back at the initial study and the 5-year follow-up study undertaken. The research examines the challenges associated with living with FI and different ways of managing the condition, including the importance of social support.
participants’ homes, or, if they requested, at an alternative venue of their choosing. The spouses/partners were not formally invited, but one wife was present when her husband was interviewed, contributing infrequently, and two wives joined the interview after the start, but did not contribute. The majority of references to partners’ views were as reported by the participants. The interviews were recorded with the participants’ permission, apart from one woman, who preferred that the interviewer took notes. The recordings were transcribed, numerical coding indices placed in the transcript margins and thematic framework charts were constructed, allowing constant comparative analysis within and between transcripts.
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Table 1. Interdependent themes arising from the initial study Theme
Explanation
1 Impact of FI on self
Self-esteem, confidence, mood, feelings of control of the situation, social acceptability, attitude to FI
2 Response to impact of FI on lifestyle
To the occurrence of FI, ‘ownership’ of FI, adaptations made and responsibility for progress in self-management
3 Interaction
With ‘significant others’, the generalised other (those in the public domain of the individual) and with others who have FI (‘insiders’)
4 Direction in life
Upwards (positive narrative), downwards (negative narrative) or level progress
5 Quality of interaction with health professionals Source: Wilson, 2013
Dynamic continuum to
positive
Overwhelmed to mastery x
Theme 1: Attitudes/feelings about self
x
Theme 2: Responses to impact of FI Theme 3: Interaction
x
with significant others with the generalised other
Theme 5: Interaction with health professionals
x x
Interaction
x suggests position on continuum; not to scale Figure 1. Hypothetical positions, in which a participant expresses some interdependent themes more positively than others (Wilson, 2013)
of FI had reduced their self-esteem, selfconfidence and feelings of social acceptability. They experienced a low mood and used forceful language, describing life with FI as ‘horrendous’, ‘dreadful’, ‘black days’ and said that they ‘shed a million tears’. They reconstructed life before FI as a ‘golden past’, typifying a negative, downward narrative under the direction of life theme. A total of 11 of the participants, displaying different levels of adaptation and progression, were ‘approaching mastery’.Typically, members of this group exemplified an upward ‘direction of life’, displaying a more positive mood and self-concept. They had milder symptoms, either as a result of their clinical condition or their control strategies, having lived with FI for longer, although three in particular could remember having been ‘overwhelmed’. Six participants, positioned between the poles, and labelled ‘accommodating to FI’, were stoically resigned to living with FI and, remaining static, typified a level ‘direction of life’. Displaying higher comorbidity, they often looked to health professionals for solutions. Not experiencing relentless symptoms characterising the ‘overwhelmed’ participants, they organised their lives within personal
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comfort zones in time and place; they were reluctant to risk FI in public, so avoided going out at times of the day when FI was more likely to occur, and avoided places where they were unsure of toilet provision or that were further from home. The only participant who was interviewed twice was included in this group;he demonstrated progression from being ‘overwhelmed’ moving towards ‘accommodating’. There had been insufficient time to carry out more than one interview with each participant. Excluding the interview to pilot the topic guide, this man (who was interviewed twice) was the first to be interviewed, and demonstrated his enthusiasm to contribute to the project. As there was sufficient time to re-interview one individual, and the researchers agreed that he should be approached, his second interview, the penultimate interview of the initial study, took place 17 months after his initial interview. As none of the participants expressed each theme uniformly, to avoid forcing them into inappropriate groups, the researchers allowed for this and acknowledged variation (see Figure 1); the overall grouping was flexible
Significant others (SOs), particularly longterm partners but also children and close friends/confidants, assisted adaptation, becoming ‘honorary insiders’. While not experiencing FI first-hand, they developed empathic understanding and were accepted by the ‘insiders’ with whom they interacted. The majority had been SOs before the onset of FI. The SOs of those ‘overwhelmed’ provided both psychological and physical support, although ‘overwhelmed’ participants reciprocated little. However, those participants who were ‘approaching mastery’, having become more proactive, developed coping strategies within which their SOs often played a part. Some 10 participants had partners who provided significant support, two had understanding partners who were less involved, four did not involve their partners and six had no partner. Some who were new to living with FI were unaccustomed to discussing it with health professionals, finding it embarrassing, especially if consulting a health professional of the opposite gender, although this became easier with time.
Methods For each follow-up study, data were collected and constant comparative analysis was carried out within and between the transcripts of the study being undertaken and also with previous data sets.
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Negative
and dynamic but individuals were largely typified by the characteristics of one of three descriptions. The practical responses of the participants to FI varied and depended on their level of adaptation. The majority had used bowelrelated medication with varying degrees of success. For example, one man ‘approaching mastery’ had devised an effective regime of antidiarrhoeals and laxatives, while two women, ‘overwhelmed’ by FI, did not use antidiarrhoeals, although they were aware of their potential benefit. Only five participants had Royal Association for Disability and Rehabilitation (Radar) National Key Scheme keys to give them access to toilets for disabled people. FI is a condition that is hidden unless it either occurs or is mentioned; participants were unlikely to disclose their FI in order to discover what could help their adaptation, and unaware that they could still qualify for a key. Similarly, only four, one of whom also had a key, had Can’t Wait Cards, that they could use to indicate the urgent need of using a toilet.
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CONTINENCE 5-year follow-up: data collection December 2007–January 2009 The sample comprised five men and six women; one man and three women involved in the initial study had died, one man and one woman were too unwell to participate; the man who had been involved in piloting the topic guide and another who had moved away were ineligible, living out of the area covered by the LREC, and one man and two women did not respond to their invitations to take part in the follow-up study. Although the changes in the number of participants meant the average age was greater than five additional years beyond the initial study and the proportion of self-nominated participants was greater, the sample was comparable to the initial sample regarding the multi-variational quality of the sample and the gender balance.
Findings
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Of the 11 participants, 4 men and 4 women had been judged to be ‘approaching mastery’ in the initial study. While seven described adaptation and resilience allowing them to achieve goals previously rendered impossible, one man, with deteriorating health, had accepted the need to downgrade former aspirations. Severe back problems had put his FI into perspective and he was living with it, along with other chronic conditions. A woman, judged as ‘overwhelmed’ in the initial study, had progressed to ‘approaching mastery’; through trial and error she had developed strategies, including the use of antidiarrhoeals, enabling her to become sufficiently confident to travel the world with her partner. A man who had been ‘overwhelmed’ had progressed to a static comfort zone, ‘accommodating’ to FI. However, the youngest participant, although demonstrating progress in interaction about FI with SOs, the ‘generalised other’ and, particularly with health professionals, overall, continued to be ‘overwhelmed’. Long-term partners in particular continued to support adaptation; the man who had progressed to ‘accommodating’ had reunited with his wife, who joined him for the interview, contributing minimally, but their interaction reflected mutual support. The participant who remained largely ‘overwhelmed’ had no partner, received family support, but had little social interaction beyond this.
10-year follow-up: data collection April 2012–October 2012 A total of three men and six women participated. As those unable to participate (there were 11 participants in the 5-year
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follow-up study) were both male (the participant who had reunited with his wife had moved out of the area and the man who had previously downgraded his aspirations had hoped to be involved but, owing to failing health, was unable to take part). This resulted in a gender imbalance, although the age range, original referral source and clinical background remained comparable to the previous study. The three men available for the 10-year follow-up spanned an age range from 66 to 79 years; those unable to take part had ages between the youngest and oldest. One had a history of colitis and partial colectomy, but another male participant who was taking part also had a history of partial colectomy. The other man unable to participate had Crohn’s disease, but this was also represented by another male participant. However, an important previous finding was that this man, now unable to participate, had progressed from being ‘overwhelmed’ to ‘accommodating’ to FI; he would have provided valuable follow-up data regarding his subsequent adaptation, but his absence from the sample was an insufficient reason to abandon the 10-year follow-up. Of the ten participants in the initial study who had self-nominated, six joined the 10-year follow-up study, their commitment possibly implying an enthusiasm to continue with the study, again affecting the sample. All were ‘approaching mastery’ by the 10-year follow-up study, except one woman who overall remained ‘overwhelmed’ but was now considered ‘accommodating’ to FI. Table 2 shows a comparison between participants’ perspectives in the initial study and the 10-year follow-up.
as she felt able to cope, she had not enquired regarding the possibility of further surgery. These participants had continued, through trial and error, to develop and refine diverse individual lifestyle, dietary or medicinal strategies. Knowledge of Radar keys and Can’t Wait Cards was universal but their use depended on lifestyle requirements. Although FI in public was still avoided and viewed negatively, as time passed it posed less of a threat to those ‘approaching mastery’ and they had incorporated its possibility into their lives. In contrast to their previous fastidious compliance with practices to reduce its possibility, participants now confessed to eating all the food provided in a restaurant because it had been paid for, missing antidiarrhoeal medication before eating out or ignoring toilet urgency while otherwise occupied:
Findings Impact and response to FI
In contrast with the initial study, when FI was taboo and rarely mentioned outside the confines of SOs, participants felt less inhibited, although if it was mentioned it was usually when talking to people who were already aware of their bowel conditions. Generally, FI was not mentioned, not because it was taboo but simply because it was not considered to be part of acceptable conversation. Participants did not want their stools to cause unpleasantness to others, taking measures to avoid them seeing, smelling or having to clean away/dispose of their faeces. However, faecal or flatal odour was treated with humour, particularly if SOs were present, to dissipate any embarrassment. In the initial study, a woman acutely embarrassed and negative about her offensive stools, endeavouring to avoid leaving an odour in
None of the participants anticipated a cure and accepted their FI symptoms, sometimes grudgingly, even when deteriorating. Two participants had been offered surgery; one refused, basing this decision on her current pe gender rspective that she had learned to cope. The other had a potentially effective sacral nerve stimulation device removed following infection; the surgeon had voiced his intention of replacing it, but when he did not make further contact, the participant did not pursue the matter. A third participant who had previously undergone rectocele (a bulging of the front wall of the rectum into the back wall of the vagina (American Society of Colon and Rectal Surgeons, 2015)) surgery had become aware of the return of her rectocele. However,
‘If I’m watching telly and I’ve got maybe a bit engrossed in my soaps, I think “I’ll go in a minute” and by the time I have gone, I haven’t made it to the bathroom.’(Female, aged 59) The participant, who in the previous studies remained ‘overwhelmed’, was struggling with poor mobility and comorbidity; she expressed how her illnesses and incontinence ‘take over’. Since her regular GP had left, she missed being able to discuss symptom management with the same doctor; this included her irritable bowel syndrome medication, that she felt had been overlooked, although she had not mentioned it herself. However, she had become accustomed to using antidiarrhoeals, which proved effective.
Interaction with the ‘generalised other’
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Table 2. Comparison between initial study and 10-year follow-up study participants Initial study Source
Informant’s assessment: cause of FI
Informant’s perspective: life with FI
Overall group
10-year follow-up study Informant’s perspective: relevant treatment
Informant’s perspective: life with FI
Overall group
Female, 59
Nurse referral
Childbirth, badly stitched
‘I used to sit and cry and think “why me?”, it only happens to old people.’
AM (O in past)
Refused sacral nerve stimulation (SNS), but may reconsider in future
Can live with FI at the moment; spouse/family supportive
AM
Male, 75
Selfnominated
Crohn’s disease ‘out of the blue’ (attributed symptoms to work-stress)
Angry about having to retire early, disliked food restrictions
AM
Bowel function improved since last surgery; ‘glue’ used instead of sutures
Can eat a wider variety of foods; fewer problems with hard/soft stools; spouse supportive
AM
Male, 66
Nurse referral
Adverse result following spinal injury surgery
Remembers onset as ‘black AM (O, days’ when there were A in ‘a million tears shed’ past)
SNS performed, seemed effective, but recurrent infection, device removed
Bowel, bladder, mobility problems; adapted, using trial and error; supportive spouse
AM
Female, 57
Selfnominated
Childbirth, surgery, irritable bowel syndrome (IBS)
‘It gets you very depressed and it tends to make you a bit reclusive … at my age I shouldn’t think, “Oh well, I’ll sit in”’
O
Poor mobility, diabetic diet helping bowels, mebeverine discontinued when diabetes medication commenced, has IBS symptoms, no regular GP to discuss concerns with
Aims to improve overall health for own quality of life, and to look after young relative
A
Female, 70
Selfnominated
Liquid stools, urgency after eating, pain from eating certain foods; pelvic floor weakness
‘I’ve come into the office crying because I’ve been so floored that all this has happened. It’s so distressing’
O
Hip problems affecting mobility; urgency after eating, more severe
Increased self-confidence; self-management: loperamide, food exclusion, toilets for disabled people, odour neutraliser spray; partner supportive
AM
Female, 75
Selfnominated
Before rectocele surgery, loose stools, FI when asleep; post-surgery, urgency, loose stools (IBS?)
‘When I know I’ve gotta go, then it becomes a panic station’; obtained book on IBS, commenced food diary
AM
Suspects rectocele has returned. Decided against further surgery, suspects loose stools are food- and stress-related
Intermittent recurrence of loose stools; confident in coping (trial and error, food exclusion); spouse supportive, but participant took on caring responsibilities when he became ill
AM
Female, 71
Selfnominated
Intermittent diarrhoea, FI, diagnosed diverticulitis
‘I thought, “With that smell, they would smell it, standing near you and that would be offensive to them” … I’d think, “I feel terrible”’
AM
Health issues affecting mobility; sought advice for constipation
Balances stool consistency by diet. Believes stress management also helps; spouse supportive, but participant took on caring responsibilities when he became ill
AM
Male, 79
Selfnominated
FI after bowel cancer surgery, frequency, loose stools
‘I’ve learnt to live with it. There are times when I get annoyed … so it does control your life, as well as you controlling it’
AM
Hospital admission for abdominal pain/distension, no treatment necessary
Bowel frequency, day/ night, but able to nap by day; food trial and error ineffective; severe anal soreness; spouse supportive
AM
Female, 65
Database, contacted through nurse
FI after breaking neck, usually occurs if requiring manual removal of faeces
Nurses performed bowel care, carers get her up, put her to bed, friends stay during the night, but sleep; she is happy with this routine
AM
Period of low mood, poor appetite, was treated, improved; stopped taking stool softeners, preferring faeces to be hard
Following ‘low’ period, started going out, choosing supermarket/ clothing purchases, attaining a higher level of rehabilitation/quality of life than before recent disruption
AM
* Age at 10–year follow-up O=overwhelmed A=accommodating AM=approaching mastery
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Gender, age*
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CONTINENCE
KEY POINTS n Individuals with faecal incontinence (FI) may avoid discussing their condition and it may be necessary to ask them about it in order to ascertain whether assistance would be beneficial n Non-medical items, including Can’t Wait Cards and Radar keys (for access to toilets for disabled people), may assist adaptation to living with FI n Concealment of FI may prevent individuals locating other ‘insiders’ (people with FI) for support. Interaction between insiders may be greater if there are also other common characteristics, such as age and gender n Partners can play an important part in supporting people with FI
public toilets, remained seated while flushing the toilet three times. She now viewed her routine light-heartedly: ‘We were on a ship … I thought, “ooh dear, I’ll flush it” and of course, it’s [laughs] a suction one and I gave out a tremendous scream, I thought I was going to go down the toilet.’ (Female, aged 70)
Interaction with significant others Seven participants had a partner and described their empathic support in living with FI; two men used ‘we’ in relation to teamwork with their wives. Two women, one experiencing comorbidity, who were accustomed to their husbands’ caring for them, became carers themselves, when their husbands became ill, now reciprocating their care. The associated stress exacerbated their bowel dysfunction, but they demonstrated self-efficacy and managed the role reversal. The participant without a partner, coping alone with comorbidity and showing little progression, had recently become involved in looking after a young relative. This motivated her to be more proactive, demonstrating selfefficacy. She listed recent life adjustments, some of which she had already made and others that she had commenced recently, as she progressed in her adaptation: ‘I suppose my goal is to keep myself healthier … while [he’s] growing up.’ (Female, aged 57)
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Interaction with ‘insiders’ No participants who previously described ‘insider’ interaction were represented in this 10-year follow-up study. Interestingly, those who now participated in ‘insider’ interaction, found it was facilitated not only by shared experiences of FI, but also by common characteristics, e.g. gender and age. While a woman found that two younger,
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male ‘insiders’, linked by family ties, didn’t talk about their bowels (to her), a female neighbour, whose bowel dysfunction she was aware of, telephoned her for advice before they went on a coach trip together. However, when another participant gave advice to a female acquaintance about a bowel problem that they had discussed previously, she acknowledged that the woman was ‘quite a bit older’ than she was, inferring that the interaction would have been easier if they had been of a similar age. This participant, if aware of faecal odour in a public toilet, experienced not revulsion but ‘insider’ empathy, asking herself: ‘I wonder if it’s somebody with my problem?’(Female, aged 70) This contrasted with the findings of the initial study, when many of the participants voiced the despair they felt at the onset of FI, that they alone were living with the condition.
Discussion Adaptation: living with FI and comorbidity After more than 10 years, some participants had improved, while others had learnt to cope with FI. One woman, who was the youngest participant, without partner support and experiencing a high level of comorbidity, had remained static. Bayliss et al (2003) examined the barriers to self-care by those with comorbid chronic illnesses, listing many problems that this participant had also identified, including the compound effects of conditions, physical limitations (including mobility), medication problems from polypharmacy, low self-efficacy or sense of loss of control, the emotional impact of conditions and the need for social support (which she lacked). Unlike other participants with comorbidity, she coped alone; her lack of progress impacting only on herself and she did not have the incentive to reciprocate
a partner’s contribution with proactivity (Lewis et al, 2006). However, her intention to look after her young relative became a turning point, providing her with the incentive to become healthier and she gender demonstrated self-efficacy and progression. Agreeing to look after her relative represented extrinsic motivation, initially externally motivated to serve a particular goal, but by identifying this as having personal importance, she integrated it into her own goals (Gaine and La Guardia, 2009).
Supporting partners Participants described the support received from their partners as ‘teamwork’. Lewis et al (2006) discussed interdependence; when couples engaged in communal coping, they held a shared assessment of a health threat and a joint solution of dealing with it, expressing reciprocity. The 10-year followup study identified an interchangeability, dependent on each partner’s health; two women shifted from being cared for to caring, demonstrating reciprocity and selfefficacy as they rose to the challenge.
‘Insiders’ and homophily As their confidence increased, participants felt able to advise other ‘insiders’, and this was more likely when they had other variables in common. Homophily is the term given to principle that ‘like attracts’. Mark (2003) describes sociodemographic characteristics, as defining positions in a multidimensional ‘social space’, where, for example, age and education define a two-dimensional ‘social space’; those of comparable age and education are located close together. Participants felt more comfortable interacting with other ‘insiders’ when they shared ‘social space’. When Chelvanayagam and Norton (2000) investigated quality of life of people with FI using focus groups, they aimed to make these groups homogeneous by inviting only women experiencing long-standing FI who had failed to respond to treatment. According to researchers, little prompting was required to initiate conversation, although the women were strangers and the topic taboo.
Conclusion After 10 or more years of living with FI, comorbidity and ageing posed further challenges to adaptation and FI was not always the dominant issue. By using past experience and refining by trial and error, adaptation was ongoing, allowing participants
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to identify new self-management strategies, and sometimes relax compliance to others that previously had been adhered to rigidly. Fresh challenges provided motivation and stimulated self-efficacy. SOs, particularly partners, continued to be central to achieving adaptation. Outside the comfort zone provided by SOs or health professionals, participants usually restricted FI-related interaction to other ‘insiders’, especially when facilitated by further similarities or others who were aware of their condition, but otherwise did not consider it to be an BJN acceptable topic of conversation.
Conflict of interest: none American Society of Colon and Rectal Surgeons (2015) Rectocele Expanded Information. http://tinyurl.com/ oaeqwue (accessed 23 February 2015) Bayliss EA, Steiner JF, Fernald DH, Crane LA, Main DS (2003) Descriptions of barriers to self-care by persons with comorbid chronic diseases. Ann Fam Med 1(1): 15–21. doi: 10.1370/afm.4 Chelvanayagam S, Norton C (2000) Quality of life with faecal continence problems. Nurs Times 96(31Suppl): 15-7 Gaine GS, La Guardia JG (2009) The unique contributions of motivations to maintain a relationship and motivations toward relational activities to relationship well-being. Motiv Emot 33: 184-202 Glaser BG (2002) Conceptualization: on theory and theorizing using grounded theory. Int J Qual Methods 1(2): 23-38 Lewis MA, McBride CM, Pollak KI, Puleo E, Butterfield
RM, Emmons KM (2006) Understanding health behavior change among couples: an interdependence and communal coping approach. Soc Sci Med 62(6): 1369–80 Mark N (2003) Culture and competition: homophily and distancing explanations for cultural niches. Am Sociol Rev 68(3): 319–44 Thorne S, Paterson B (1998). Shifting images of chronic illness. Journal of Nursing Scholarship 30(2): 173-8 Weinberg MS, Williams CJ (2005) Fecal matters: habitus, embodiments, and deviance. Social Problems 52(3): 315-36 Whitehead WE, Borrud L, Goode PS et al (2009) Fecal incontinence in US adults: epidemiology and risk factors. Gastroenterology 137(2): 512–7, 517.e1–2 Wilson M (2007) The impact of faecal incontinence on the quality of life. Br J Nurs 16(4): 204–6 Wilson M (2013) Living with faecal incontinence: followup to a research project. Br J Nurs 22(3): 147–50, 152–4
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