Qualitative studies which explored the phenomena of living with IBD from the patient’s perspective were included in the synthesis. Additional inclusion criteria were studies restricted to English language only, published and unpublished studies and sample population adults > 16 years.

The study focused on only one aspect e.g. living with a colostomy or diet, and mixed studies of irritable bowel syndrome and IBD.

Electronic literature searches were conducted in MEDLINE (1966-2010), PsychInfo (1967-2010), EMBASE (1980-2010) and CINAHL databases (1982-2010) and the British Nursing Index (1994-2010) via the OVID platform. Search filters developed by the Hedges database from McMaster University Health Information Research Unit and Kathryn Nesbit, Edward G Milner Library, University of Rochester Medical Centre, were adapted to aid the search (http://www.urmc.rochester.edu/hslt/miner/digital_library/tip_sheets/Cinahl_eb_filters.pdf). The search was conducted from the inception of the databases to August 2010. Web of Knowledge and CINAHL were used for citation searches, foot note chasing and journal runs. Author searches were also incorporated into the search of the literature from journals including Qualitative Health Research, Gastroenterology Nurse, and Inflammatory Bowel Diseases[35].

Of the 1395 papers generated by the preliminary search of all the databases combined, 1282 were excluded as they were irrelevant to the study question.113 abstracts were selected for further review, of which 92 were excluded based on duplication, quantitative methodology, and wrong subject matter. Four unpublished dissertations were identified within this and obtained, two excluded due to the quantitative methodological approach used[36,37], the remaining two were included for initial screening[38,39]. Full text papers were obtained for the remaining 17 papers. These 17 papers and two dissertations were then screened for initial inclusion using three screening questions: Does this paper report on findings taken from qualitative work? Did the work involve both qualitative methods of data collection and analysis? Is this research relevant to the topic area?[40].

Of the 17 papers and two dissertations screened, 11 papers and one dissertation were excluded from the synthesis. The dissertation was excluded as no qualitative methodological analysis was undertaken[39]. The remaining papers were excluded based on: methodological approach used an online survey method[19]; paediatric age group[41]; subject matter focused on living with an ostomy[42]; narrative journey with no qualitative methodology[43]; participant responses used to validate commonly used indices[21] and six papers excluded as the subject group was a mixture of patients with IBD and irritable bowel disease and unable to distinguish between responses from each group[44-49].

The final selection of six papers[17,50-54] and one un published dissertation[38] were reviewed by all three authors. Data extraction forms were developed and data extraction, including study eligibility, study demographics, study characteristics, and themes, and data extraction were independently completed by three reviewers (Kemp K, Griffiths J, Lovell K).

The CASP[55] tool was used to quality appraise the papers and also to aid the interpretation and exploration process of the synthesis[56]. Further synthesis of the themes from the studies was agreed collectively at synthesis meetings to develop the new translations. The search summary is found in Figure 1 and full details of the search strategy are available from the authors.

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Figure 1 Flow chart summarising search strategy.

The seven selected studies were published from 1996-2010. Two were conducted in the United Kingdom[50,54], one in Sweden[52], one in Canada[51], one in New Zealand[53], and two in America[17,38]. All of the studies used in depth interviews[17,38,51-54] and one study combined interviews with focus groups[50].

A total of 86 patients with an age range was 16-83 years were included and only one reported one patient from an ethnic background[52]. Two studies focused on CD only[52,53], and one study UC patients only[17]. The remaining studies included people with both UC and CD. Patients were recruited from relevant national IBD charities[38,53], directly from outpatients clinics[17,52,54], media advertisements[51], and from a previous community based study[50]. The theoretical perspectives were mainly phenomenology[17,38,51,53] and grounded theory[50,52] with one study using framework[54].

The three authors independently reviewed all of the studies. The emergent themes were subject to constant examination until an argument to explain the data of the combined studies was developed. The themes and findings of each study were compared with one another repeatedly to identify the 1st order constructs. This revealed the similarities and differences in the data, which led to 2nd order constructs and the interpretation of all of the synthesised studies. For example, study 1 may have had findings AB and C, study 2 may have findings AC and D, a new finding. The synthesis from studies 1 and 2 was compared to study 3 and so forth, until all of the papers were synthesised[29,57]. Early on in the synthesis it was clear that the relationship between the studies was mutual, all sharing common themes[58]. As the studies had a “reciprocal” arrangement, a new argument was developed. This process was followed systematically, starting with the oldest study first[17] in keeping with the model of “line of argument” synthesis[58]. The themes and concepts are illustrated in Table 3 and the relationship between them identified in Figure 2.

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Figure 2 Relationship between synthesised studies. IBD: Inflammatory bowel disease.

The synthesis of the seven studies identified that people with IBD endure many daily challenges, stress, pain, fatigue, and fighting for control. The combined impact of living with IBD is the tension they live with. The metasynthesis has provided an in-depth exploration of living with IBD: “pushed and pulled: a compromised life”, people living with IBD experience a constant conflict throughout their lives, they push to be normal but IBD pulls them back.

A disease for life: Participants were acutely aware that they had been diagnosed with a long term condition with no cure. Facing and accepting the incurable illness was met with a variety of responses yet the need to get back to normal, but inability to do so, was a theme running through all of the studies.

Fear of long term effects: The fear of long term effects, of death and dying left people feeling powerless[52]. The risks of cancer development and passing on the illness to children added to the burden of living with the physiological aspects of the illness[38,52].

Invisible disease: A difficult aspect of living with IBD is its invisibility[17,38,52,53]. The studies detail how this concept affected the individuals. The lack of understanding from others doubting that they were actually sick as it was not visible, added to their feelings of anger and frustration, in particular with family members[51]. “My sister says I’m blowing this up...it’s an act...I’m trying to get attention”[51].

Acceptance yet fight: A common theme throughout all of the studies was the individual’s willingness and need to wrestle with their illness. Three of the studies discussed the acceptance of living with the illness yet continuing to fight it[38,52-54]. This can be interpreted as neither a submission to the illness nor as out and out combat but more where individuals made peace with their illness. “This is how I am...to me it’s no different than saying I have a dog”[38].

Control: The concept of control is visible in all seven studies, whether this was trying to control the illness[50], controlling bowel urgency[38] or losing control[51]. Individuals fought to gain and maintain control and find a balance between what they could control and what they needed to control, for life to be acceptable[54]. Gaining “control” had a positive impact on the individuals, recognising “performance accomplishments”[54] and allowing them to feel “normal”[50]. However the cost of achieving this was a large trade off which was capable of wearing the individual down and losing its ability to continue to fight, fatigue becoming a significant problem[50]. Attempting to control their illness was their attempt to try to maintain “normality” for many people within the studies[38,50,52,53].

Knowing my body: Participants voiced the theme of “knowing my body”, with accounts of knowing when their illness flared up better than their doctor. An increased awareness of their body led the individuals to try to identify triggers or patterns and recognise when their illness flared up. By learning about their own body the individual tried to gain some scale of control but often this concluded in them feeling helpless and misunderstood[53]. “He stated that he knew it was not his CD even though it was the physician’s first inclination”[38]. Wrestling with life culminates with the individual pushing to be normal, accepting their illness yet striving to thrive and survive.

Fear of incontinence (unpredictability, humiliation): All of the studies report the patient’s fear of incontinence and how they try to live with this[17,38,50-54]. The fear appeared to be associated with past experiences of actual episodes of incontinence and remembering the humiliation this produced. Actual episodes were rare but the fear remained constant. Patients felt ashamed, not only of the actual incontinence but also of their ongoing fear. Some people reported the overwhelming shame of incontinence. Shame and humiliation was even experienced within the family unit, one grandmother describing the embarrassment should her grandchildren know that she cannot make it to the bathroom[38,51,54]. This fear of incontinence was all consuming for some patients and became a focus of living with IBD, over and above the physical symptoms. “It’s terrible, but that’s the biggest fear”[38].

Behaviour due to fear of incontinence (avoidance): The fear of incontinence and its unpredictability had a profound effect on the individual’s behaviour. For many this fear led to an avoidance or curtailing of daily activities and impaired individuals work, social and leisure and private functioning[17,38,51].

Individuals used a range of coping strategies to either manage or avoid incontinence and included carrying potties and spare clothes, wearing nappies and identifying bathrooms prior to any travel[17,38]. Travelling anywhere required extra time and was dictated by the individual’s bowel frequency and control. “Planning an escape route provided a sense of security even if it was not needed”[38].

The impact of this behaviour led to avoiding places and people. Studies describe patients only attending safe places[50] with a dependency on toilets[51] or avoiding public places all together[17].

Impact of behaviour (missing out on life events, socially isolated): The fear of incontinence, coupled with avoidance behaviour, was immensely detrimental to the individual’s QoL. They became socially isolated very easily: had limited activity with family and friends[38]; became reclusive[50]; and missed out on life events[51]. The self enforced social isolation led to feelings of social inadequacy, lacking the necessary societal skills for everyday living[51]. “I’ve just missed a whole part of my life”[51].

Individuals expressed feeling damaged, a failure, weak and feeble with overwhelming feelings of anger, frustration and depression[50-53]. Unable to identify a pattern or trigger for their disease reinforced all of these negative emotions[17,38,53].

Stress was overtly discussed in five studies[38,51-54]. Triggers for stress ranged from the illness itself to outside factors such as the ability to work and financial concerns and manifested itself in the form of fatigue and exacerbations of their disease. Lack of understanding from family members and feeling redundant in the family home[50] left people feeling alienated from partners and family[51], and people reported complex emotions of “letting people down”[53].

Fatigue, tiredness and exhaustion contributed to people’s feelings of frustration, stress and powerlessness[52]. Some people felt that fatigue was a sign of weakness[53] and was generally misunderstood by others[50] as it was not evidently visible, reinforcing the invisibility of the disease.

Detained by the disease became evident as the analysis of the studies revealed that the fear of incontinence, the behaviour associated with it and the resultant enforced social isolation, resulted in “pulling” the individual back from “normal” living.

A line of argument was derived from the synthesis of the seven studies[58]. The common translations from the studies were taken a step further and constructed into a new interpretation.

Line of argument synthesis: the ongoing factors identified by the qualitative studies impact on the individual’s whole life with IBD leading to a compromised life: the individual pushes to be normal yet IBD pulls them back. The individual is in constant conflict, fighting to be normal with the impact of this resulting in constant tension within.

The synthesised studies revealed the fear and humiliation surrounding incontinence which resulted in severely reduced social interactions. Descriptions how the illness “intruded” into the participant’s life and the constant “fight” for normality was evidenced throughout all of the studies. Phrases, including the “see-sawing of fears and hopes”, illustrate the uncertainties and contradictions of living with IBD. Importantly, the individuals describe the courage required to break the social isolation resulting from bowel symptoms. All of these aspects of living with IBD are directly related to everyday life.

The incidence and prevalence of inflammatory bowel disease (IBD) is increasing and it is being recognised as a global long term condition, with significant morbidity and cost. In order to provide patient centred care, an understanding of the impact of living with IBD, from the patient’s perception, is important. The Rating Form for IBD Patient Concerns and Inflammatory Bowel Disease Questionnaire are widely used measures to describe what it is like to live with IBD but these fail to capture the essence of this. There are few qualitative studies which fully demonstrate the impact of living with this condition. By using metasynthesis methodology, this study adds significant understanding of IBD and the impact of living with IBD, from the patient’s perspective.

There is growing emphasis that the needs and preferences of patients must be addressed when developing and evaluating new models of care delivery. Incorporating patient preference, choice and experience is acquired through qualitative studies. Synthesising qualitative studies of IBD gives a profound insight into the disease. Capturing this evidence can lead to a greater understating of the condition and help to tailor treatments and provide personalised care.

Recent audits from the European Federation of Crohn’s and Colitis Association has demonstrated, on a large scale, the impact IBD has on the individual’s personal, work and social life. This audit highlighted some important considerations of IBD care in Europe, however, a more immersed understanding is required. This is the first metasynthesis of IBD and provides a comprehensive insight of what it is like to live with.

The findings from this study emphasises the impact incontinence has on the individual, even in remission. The fear of incontinence, the behaviour related to this fear and the impact of this behaviour on the individual, are the most significant issues to emerge from the metasynthesis, and requires further qualitative enquiry.

IBD is a collective term for Crohn’s disease and ulcerative colitis. Qualitative studies typically use focus groups and/or interviews to gather data. Qualitative studies, from the patient’s perspective, are used to highlight the lived experience of a phenomenon. Metasynthesis is a method of identifying and bringing together (synthesising) relevant research evidence from a variety of qualitative studies. Metasynthesis methodology seeks to expand the understanding of patient experience.

The enclosed metasynthesis analyses the data from the literature regarding understanding the health and social care needs of patients with IBD. The paper is very well written. The authors observed that the most significant issues were fear of incontinence, the behaviour related to this fear and the impact of this behaviour on the individual. This paper adds a lot of important information on health quality of life in IBD patients and help readers to understand the IBD more.