Gisela Ringstrom, PhD, RN Henrik Sjovall, PhD, MD Magnus Simrén, PhD, MD Eva Jakobsson Ung, PhD, RN
The Importance of a Person-Centered Approach in Diagnostic Workups of Patients With Irritable Bowel Syndrome A Qualitative Study
ABSTRACT The aim of this study was to explore experiences of undergoing a diagnostic workup in patients with irritable bowel syndrome (IBS) at a unit for functional gastrointestinal disorders. Research has been sparse in addressing such experiences and the impact on well-being. Patients with IBS were invited to perform a workup of gastrointestinal tests. Of 120 patients who completed the tests, 20 were invited for an interview. Analysis of interviews was conducted through interpretative phenomenological analysis. One master theme emerged: validation of IBS experience inferred from three subthemes: the duality of suffering in IBS, coping with inflicted discomfort and pain, and capacity for resilience. Patients reported long-term suffering from symptoms including poor management within the healthcare organization. Despite inconvenience associated with the tests, patients expressed appreciation for professional attributes such as attentiveness that were perceived as a sense of being cared for and seen as a “person.” During the workup, patients acquired greater knowledge of what IBS means, including knowledge about their own body functions and experienced relief that symptoms were not caused by any “dangerous” disease. Validation of IBS experience surfaced in the data implying that in such context, patients with IBS appear to find personal solutions to cope with everyday experiences and enhance autonomy.
I
rritable bowel syndrome (IBS) is a functional gastrointestinal (GI) disorder with a prevalence of approximately 3%–20% (Grundmann & Yoon, 2010). Irritable bowel syndrome is defined as a chronic condition characterized by a combination of abdominal pain or discomfort and altered bowel habit (Spiller et al., 2007). Besides the suffering that IBS
symptoms arguably inflict, there are numerous empirical studies that have linked IBS to work absenteeism, reduced quality of life, and psychological distress. Furthermore, there is to date no drug or medical remedy that has been shown to cure IBS symptoms (Kellow, Eckersley, & Jones, 1991; Whitehead & Palsson, 1998).
Received March 27, 2012; accepted June 27, 2012.
Magnus Simrén received unrestricted research grants from Danone and AstraZeneca and served as a Consultant/Advisory Board member for AstraZeneca, Danone, Novartis, Almirall, and Shire/Movetis.
About the authors: Gisela Ringstrom, PhD, RN, is Head Nurse, Department of Internal Medicine, Institute of Medicine, Sahlgrenska Academy and University of Gothenburg Centre for Person-Centered Care (GPCC), University of Gothenburg, Gothenburg, Sweden. Henrik Sjovall, PhD, MD, is Professor, Department of Internal Medicine, Institute of Medicine, Sahlgrenska Academy and University of Gothenburg Centre for Person-Centered Care (GPCC), University of Gothenburg, Gothenburg, Sweden. Magnus Simrén, PhD, MD, is Professor, Department of Internal Medicine, Institute of Medicine, Sahlgrenska Academy and University of Gothenburg Centre for Person-Centered Care (GPCC), University of Gothenburg, Gothenburg, Sweden. Eva Jakobsson Ung, PhD, RN, is Senior Lecturer and Associate Professor, Institute of Health and Care Sciences, Sahlgrenska Academy and University of Gothenburg Centre of Person-Centered Care (GPCC), University of Gothenburg, Gothenburg, Sweden.
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This study was supported by the Swedish Medical Research Council (grants 13409, 21691, and 21692), The Marianne and Marcus Wallenberg Foundation, University of Gothenburg; Centre for PersonCentered Care (GPCC), Sahlgrenska Academy, University of Gothenburg; the Faculty of Medicine, University of Gothenburg; and The Health and Medical Care Committee of the Regional Executive Board, Region Västra Götaland. The other authors declare no conflict of interest. Correspondence to: Gisela Ringstrom, PhD, RN, Department of Medicine, Institute of Medicine, Sahlgrenska Academy and University of Gothenburg Centre for Person-Centered Care (GPCC), University of Gothenburg, Gothenburg, Sweden ([email protected]). DOI: 10.1097/SGA.0000000000000011
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Given its prevalence and the medical enigma that IBS constitutes, the relatively large number of studies that this domain has accumulated seems warranted. Studies with quantitative research approaches have by large focused on the etiology of IBS (Ohman & Simren, 2007) and various interventions aimed at symptom reduction (Ford et al., 2008; Ford, Talley, Schoenfeld, Quigley, & Moayyedi, 2009; Moayyedi et al., 2010). Studies with qualitative research approaches have in contrast directed most attention toward the sometimes negative, judgmental, and problematic encounter that patients with IBS have with healthcare professionals, and the difficulties that living with IBS may imply including extensive focus on negative symptom experiences (Drossman et al., 2009; O’Sullivan, Mahmud, Kelleher, Lovett, & O’Morain, 2000). Although research and common sense suggest that IBS is a disabling and unpleasant condition, it might be useful to expand the number of vantage points employed when attempting to understand this phenomenon. One way of doing this is to shift focus to also incorporate conceptualizations that are adaptive and positive for patients. This approach has the advantage of establishing ways in which patients better can manage and reduce their symptoms and negative experiences. The aim of the current research is thus to explore the experience and meaning that IBS patients attribute to undergoing a diagnostic workup at a unit for functional GI disorders. This exploration will be permeated by a quest to explore how patients conceptualize this experience with regard to their own wellbeing. A further endeavor is to elucidate the means through which patients cope, adapt, and somehow manage what at face value would appear to be an invasive and precarious procedure.
Review of the Literature Pertinent research in IBS is (broadly speaking) assigned to those inquiries that are concerned with the difficult and problematic encounter with healthcare that patients with IBS may endure. In addition, several studies in this domain have been carried out within the remit of exploring patients’ quest, and seeking for a diagnosis and the answers that this endeavor may hold (Kennedy, Robinson, & Rogers, 2003; Meadows, Lackner, & Belic, 1997). Studies on satisfaction with healthcare provision among patients with IBS suggest that their self-perception as patients often is problematic and the time before diagnosis is challenging. Patients frequently report an array of concerns regarding their symptoms, but findings from pertinent studies suggest that healthcare providers often fail to make patients feel validated and taken seriously (Bengtsson, Ohlsson, & Ulander, 2007; Bertram, Kurland, Lydick, Locke, & Yawn,
2001; Casiday, Hungin, Cornford, de Wit, & Blell, 2009; Hakanson, Sahlberg-Blom, & Ternestedt, 2010; Meadows et al., 1997). These suggestions are consistent with studies that have pointed out that patients tend to report a need to justify their medical concerns, the way in which this is attended to by the healthcare domain is unsatisfactory, and sometimes entail demeaning attitudes (Bengtsson et al., 2007). It is, therefore, no surprise that patients with IBS tend to report a sense of abandonment and frustration (Casiday et al., 2009). Many patients also report that their symptoms of IBS are associated with a sense of shame and taboo. There is consequently a reluctance to openly discuss these issues with healthcare professionals (Hakanson et al., 2010; O’Sullivan, et al., 2000). Obtaining a diagnosis of IBS is typically described as a confusing and frustrating process for both patients and physicians, which in part may be due to patients’ expectancy to receive more diagnostic tests than what clinical practitioners use (Bijkerk et al., 2003; Whitehead & Palsson, 1998). Studies also suggest that obtaining a diagnosis early is very important for patients with IBS (Bengtsson et al., 2007; Spiller et al., 2007). However, attitudes and clinical practice regarding the diagnostic process differ depending on the specific healthcare setting in which patients are seen (Lacy et al., 2006). Irritable bowel syndrome can be diagnosed on the basis of patients’ self-reported symptoms (Longstreth et al., 2006). However, to rule out medically more severe conditions, such as inflammatory bowel disease and cancer, patients with IBS may have to undergo invasive and relatively stressful procedures such as gastroscopy and colonoscopy. It is, therefore, understandable that patients report feeling frustrated when they are told that “nothing was found” (Spiegel et al., 2005). Many patients with IBS seem to hold misconceptions about their condition and are interested in learning more about the disorder (Halpert et al., 2007; Lacy et al., 2006). Given the fluctuating nature of IBS symptoms and the level of variance between different patients, it seems highly relevant to teach patients about their condition in a fashion that is personalized (Casiday et al., 2009; Hakanson et al., 2010; Spiller et al., 2007). In summary, the vast majority of the aforementioned studies have aimed to investigate the experience of living with IBS and how the patients experience their encounters within the healthcare system. In a previous study, patients with IBS were invited to perform a diagnostic workup. The aim was to find functional disturbances in the GI tract that might explain IBS symptoms. Although some research has
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been carried out regarding the satisfaction with healthcare in patients with IBS, little research has directly addressed patients’ experiences of undergoing a structured workup. The aim of the current study was, therefore, to explore the experiences of undergoing such procedures in patients with IBS as well as the implications for their well-being. Rather than proposing an increase in specialized healthcare for patients with IBS, this study strives to contribute to the overall knowledge base. The hope is that this, in turn, could enhance the way in which IBS patients are cared for within the healthcare structure in general and perhaps within primary care in particular.
Methods This study has adopted a qualitative methodology referred to as interpretative phenomenological analysis. Interpretative phenomenological analysis is a method concerned with exploring the meaning that people ascribe to major life events (Smith, Flowers, & Larkin, 2009; Willig, 2008) and is underpinned by phenomenology and hermeneutics whereby the use of the researcher’s interpretation is seen as a vital tool. The rationale for the chosen approach is the ambition to gain a deeper understanding of the meaning that patients assign to undergoing a structured diagnostic workup. The current research assumes an epistemological vantage point based on the premise that humans’ subjective and different ways of experiencing the world are valid and of equal importance as well as essential for increased knowledge within the scientific community. This notion is paired with a more realist perspective wherein it is acknowledged that some level of universally constructed reality may coexist with subjective experiences.
The Diagnostic Workup Between 2003 and 2007, 150 people diagnosed with IBS were invited to perform a structured diagnostic workup at a unit for functional GI disorders in Sweden. One hundred twenty patients completed the workup comprising the following: • Small bowel manometry and measurement of potential difference measurement as a measure of small intestinal motor and secretory function (Larsson et al., 2007). • Rectal balloon distension as a measure of rectal sensitivity (Posserud et al., 2007). • Oro-anal transit time measurement with radiopaque markers as an indirect measure of colonic motor function (Tornblom et al., 2012). • A follow-up visit with a gastroenterologist, where the results from the investigations were thoroughly VOLUME 36 | NUMBER 6 | NOVEMBER/DECEMBER 2013
explained and discussed with the patient. A personcentered approach was used during the visit, aimed at gaining a better understanding of the patients’ symptom experience and the impact on daily life. Moreover, the emphasis during the consultation was on trying to explain mechanisms underlying the symptoms and to discuss how the symptom burden could be reduced. Based on this, a treatment plan was initiated that could consist of pharmacological and nonpharmacological treatment options. During this visit, previous investigations and laboratory tests were reviewed, information about IBS was provided, and consequences of this diagnosis were discussed with the patient. The tests were performed by nurses and physicians. The workup comprised four visits with a duration ranging between 30 minutes and 6 hours during a period of 3 months. The patients were informed regarding the aim of the assessment.
Participants A sample of 20 patients of those patients who completed the workup as a whole were invited to an interview. The sample consisted of 16 women and four men (mean age 46 years, range = 27–74 years). All participants had long experience of living with IBS. The average IBS duration was 24 (range = 7–65) years.
Data Collection To capture participants’ lived experiences, data were collected by means of using semistructured interviews that provided participants with an opportunity to share their personal experiences with the researcher. Patients were asked to describe the experiential meaning of the diagnostic workup. The inputs that patients provided during the interviews were followed up with further probes to encourage participants to elaborate (Willig, 2008). The interviews were recorded on tape and transcribed verbatim.
Data Analysis The analysis was carried out using the following procedure: 1. The content of the 20 interviews was read individually by three of the authors a number of times to develop an impression of the experience of each participant. Wide-ranging and unfocused notes that reflected initial thoughts were thereafter made. 2. Following the initial engagement with the data, interviews were read systematically to identify themes. Each of the interviews was read line by line to capture what was represented in the text through thematic labels. Those themes that 445
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shared reference points were clustered (e.g., earlier experience of healthcare, experiences of the diagnostic workup, and consequences of the workup). A summary table was produced for each participant. 3. To obtain a generalized understanding of the participants’ experiences as a whole, the summary table for each participant was integrated into an inclusive list of themes. The process of integration was carried out in a cyclical manner whereby any emerging high-order themes were checked against the transcripts, ensuring that they were grounded in data. Following this procedure, one master theme was identified: validation of IBS experience comprising three superordinate themes: the duality of suffering in IBS, coping with inflicted discomfort and pain, and increased capacity for resilience. Throughout the aforementioned procedure, an emphasis on using interpretation as a tool for understanding was made. This interpretation has been permeated by the researchers’ understanding and previous clinical experience of IBS. These preconceptions have been used when interpreting the data that have emerged in conjunction with the epistemological stance that has been undertaken. To validate the interpretation and analysis of the data, the authors were working collaboratively during the course of analysis. Codes, constituent themes, and master theme were (a) simultaneously analyzed independently by the authors and (b) continuously compared until consensus was reached. Furthermore, similarities within and differences between the themes were judged by all the authors. To describe the results, data were arranged into themes in which the patients’ own words have been intertwined with the descriptions to strengthen the reliability of the results.
Ethical Considerations This study was carried out following approval from the Regional Ethical Review Board of the University of Gothenburg. Participants were informed about the purpose of the study and the procedure involved in the interview. Participants were also informed about their right to withdraw at any time that interviews would be tape recorded and transcribed, as well as the emphasis on removing all identifying details from interviews to ensure patient confidentiality. Both verbal and written consent were obtained at the time of the interview.
Results Through the analysis of data, one master theme emerged: validation of IBS experience. This master theme was inferred from three superordinate themes: the duality of suffering, coping with inflicted discomfort and pain, and capacity for resilience (Figure 1).
The Duality of Suffering in IBS This theme transpired through the analysis and is referring both to the suffering that patients had experienced in terms of their IBS symptoms, and to the suffering that was associated with being poorly managed and treated within the healthcare organization. Participants described a sense of negative estimation of themselves as problematic and bothersome patients. This view was verbalized as a notion of having received a “mock” diagnosis, which means that they in some ways feel like a hypochondriac. The symptom-related suffering, on the other hand, was experienced as cumbersome and impairing daily life during a lengthy course of time. Patients express having experienced a long journey through the healthcare system lasting several years with repeated visits to various general practitioners, specialists, and emergency departments when the
FIGURE 1. Patients’ experience of undergoing a diagnostic workup in irritable bowel syndrome (IBS). 446 Copyright © 2013 Society of Gastroenterology Nurses and Associates
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symptoms of IBS had become too intense. Patients sought an answer as to why they were affected by their symptoms without being given a satisfactory answer. One patient described this experience: I’ve asked for all the help available, I’ve been to all the available doctors, acupuncturists, and all the private practitioners who are involved in this, everything.
Patients also expressed that their encounters with healthcare professionals have been characterized by protocol-driven treatment, incompetence, and a highly limited amount of meaningful interactions with professionals. Subsequently, patients seem to have developed a lack of trust in competence of other caregivers in relation to the assessment and treatment of IBS. This includes things that were missed in earlier workups, perceptions that they were not properly examined, and criticism of the inadequate treatment of symptoms with drugs that rarely had the desired effect. Patients also spoke of having experienced a demeaning treatment in terms of patronizing symptoms or ascribing them to psychological distress. In some cases, this adverse treatment seems to have spiraled into what has been experienced as contempt by patients. One patient told: When I was visiting a doctor, I was told that I suffered from gastritis and that I should stop stressing. Now I have proof of what I am saying. I’m no longer dismissed.
Coping With Inflicted Discomfort and Pain When exploring this theme, it became evident that patients described feeling highly motivated and willing to undergo the workup. This willingness of participating was contextualized against the backdrop of patients’ negative experience when being treated in the healthcare system for their IBS symptoms in the past. Patients also depict that the tests in the workup were seen as invasive and painful and evoke feelings of panic, humiliation, and vulnerability. As one patient noted: The entire issue is controversial and surrounded by a taboo and these kinds of procedures are hence quite unpleasant. However, in order to get answers, you’re willing to put up with almost anything.
Another patient expressed a similar view: I did it in order to get a more endurable life.
As a means to contextualize the passages given earlier, some patients described manometry as a highly unpleasant procedure because they experienced a strong sense of suffocation, a strong urge to vomit, pain, and feelings of panic during the test. Furthermore, VOLUME 36 | NUMBER 6 | NOVEMBER/DECEMBER 2013
a number of patients regarded the rectal sensitivity test as painful, exposing, and humiliating. However, patients expressed that they did not experience the most important benefit to be the tests per se. Instead, the contact and relationships with health care professionals such as doctors and nurses were emphasized as being a vital aspect. This was exemplified by one patient who expressed: I did not benefit that much from participating in the workup as such but more so from meeting the staff at the gastrointestinal unit.
The pleasant atmosphere at the unit (i.e., calm and quiet) and the professional and respectful manner in which they were treated by staff brought about a spontaneously positive response from patients. That is, patients seem to have felt that they were genuinely understood and listened to and felt that they were well cared for in conjunction with the tests. Patients also seemed to have valued staff attributes such as being professional, open, welcoming, accommodating, and attentive. On the whole, this contributed to patients not feeling exposed. The follow-up discussion with a gastroenterologist was affirmative for patients, who expressed faith in the doctor’s expertise and their appreciation of the doctor’s commitment. One experience that patients appear to have perceived during the workup as particularly poignant and meaningful concerns the notion of being cared for and seen as a “person.” Irrespective of how they perceived the various aspects of the workup, patients appeared willing to undergo the workup again. However, some patients expressed their disappointment or surprise regarding the lack of objective findings.
Increased Capacity for Resilience When the patients were asked to explain in their own words what the workup meant for them, it transpired that it had widespread consequences in terms of their capacity for resilience. That is, patients acquired a greater knowledge of what IBS means to them and how their own body functions, and they felt relieved that symptoms were not caused by any “dangerous” disease. The data appear to suggest that the workup as a whole began as a learning process that generated knowledge that varied in nature. On the one hand, patients learned more overarching and theoretical aspects that increased knowledge of IBS in general. On the other hand, patients also gained concrete insight in terms of how their own body functions. Patients highlighted forms of learning such as information opportunities, explanations, dialogues, and the fact they were given the 447
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opportunity to ask healthcare professionals questions. One patient explained this as: Each time I was at the unit, I learnt a bit more. It helped a great deal. You are given so much information. It is through that specific information that I have gained a different perspective on my problems.
Of most importance for patients seemed to be that someone who was knowledgeable and trustworthy confirmed that their symptoms were not due to a malignant disease. Patients also seem to have appreciated that healthcare staff seemed thorough in terms of how they approached patients’ symptoms that provided a sense of fulfillment. Patients had experienced concern over a long period about the symptoms. In conjunction with the workup, they described a clear relief from distress. They were relieved and felt a sense of calmness. However, in this context, various attitudes emerged about being diagnosed with IBS. Some of the patients were of the opinion that IBS is a functional deviation and accepted that it is not always possible to demonstrate these deviations. One patient said: This IBS phenomenon isn’t anything really serious. The more serious conditions could be excluded.
Other patients felt happy and relieved that the workup indicated that they were not suffering from any serious disease, but found it more difficult to accept the lack of objective findings. One patient held this view: You’re really happy that they couldn’t find anything wrong although you still feel … good grief, I feel that something isn’t right, and so I’m still disappointed in a way that nothing could be found when I feel that there is something.
Validation of Their IBS Experience The notion of experiencing a sense of validation of IBS was a theme that in many ways surfaced in and instructed the data set as a whole. Patients stated that they felt their problems were confirmed as real and authentic and that “they could put a name to it.” Some patients spoke in terms of the workup showing that they were not hypochondriacs as one patient expressed: It’s not me that is imagining things as someone who is a hypochondriac would do. They found something, which is good. It was confirmed that it’s not something wrong with me.
Validation of IBS experience was also a theme that was considered to be closely linked to the superordinate themes that have been outlined previously. It clearly transpires throughout the data that suffering
and unpleasant experience were aspects of the overall “package deal” that patients appeared capable (and sometimes even willing) to endure provided that their experiences were validated as opposed to dismissed or treated in a demeaning manner. That is to say, patients appear to emphasize the experiential meaning of having encounters that as far as possible are absent from judgmental attitudes and protocol-driven treatment. In this sense, the key issue is arguably more about how a workup is conducted as opposed to what the different tests comprise. The diagnostic workup did not necessarily result in any objective findings, but the confirmation implied that patients could easier come to terms and cope with their difficulties, and perhaps most importantly, find their own unique solutions to manage their everyday experiences and enhance their autonomy as patients and as people. Overall, the workup was a turning point for many patients and they stated that they had acquired a different perspective on their problems. This meant that patients considered their situation as more manageable and felt more able to cope and also increased their capacity for resilience. One patient said: I have stopped ruminating. You learn how to handle it.
Discussion This study suggests that a person-centered approach to care is beneficial during diagnostic processes in patients with IBS, which seems to have a considerable impact on these patients’ well-being. All patients included in this study had long-term experience in terms of being treated within a healthcare structure. Previous research has also pointed out that these experiences are far from always positive (Bengtsson et al., 2007; Hakanson et al., 2010; Lacy et al., 2006). Many patients with IBS struggle to be acknowledged and treated in an adequate manner within the healthcare organization. Considering that patients with IBS often are anxious regarding their symptoms, this could serve to exacerbate an already-difficult situation. This means that patients with IBS are in a vulnerable position during their encounters with healthcare professionals. This study also transpired that despite the patients’ presumptions and experiences that they could be treated in a condescending and demeaning manner, patients were willing to carry out the diagnostic workup. Patients with IBS tend to be pursuing answers regarding their difficulties. This quest means that they are vulnerable in terms of the physical and psychological distress they might be exposed to as part of various medical procedures. However, in most patients with IBS, a minimum of medical procedures could be
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sufficient to confirm the diagnosis while it could be necessary to expand the assessment in some patients. Patients in this study had the experience of a lengthy referral process and hence appreciated ultimately being treated in an adequate and professional manner. Patients highlighted the importance of being diagnosed in an environment that was respectful and empathic. This, in combination with staff members’ high level of competence, was characterized as a positive turning point. This is consistent with previous research that has also proposed that it is overly simplistic to view this issue as being underpinned only by the interaction between physician and patient (McCormack, Karlsson, Dewing, & Lerdal, 2010). Instead, the current study suggests that the importance of being cared for in some ways could be conceptualized as a “package deal.” In this sense, it seems more important to embrace an ethos of personcenteredness during diagnostic workups rather than focusing on any particular instances or relationship. Furthermore, patients emphasized that interpersonal competence was ranked higher than technical and theoretical skills within the medical field. Patients reported a great deal of satisfaction with the insights and knowledge that they acquired during the diagnostic workup. Previous research suggests that patients with IBS have a varied need to learn about their condition and related symptoms. It has also been proposed that learning within an IBS context could be problematic in those instances when advice given by professionals is inconsistent with the physical experience of IBS (Hakanson et al., 2010). It is, therefore, essential to employ a person-centered approach whereby each patient is considered as an expert on their own individual experiences. This would, in turn, mean that information, teaching, and advice could be designed in ways that are tailored toward personal needs. Mead and Bower (2000) argue that patient-centered professionals need to carry their expertise “invisibly” if they want to be effective. They do not apply the information or knowledge of patients or provide information on how to behave to achieve change. Instead, the emphasis is on facilitating a care environment wherein patients are viewed as able to enhance their ability to manage symptoms more independently. The benefit of this approach rests upon the fact that enhanced patient autonomy would decrease the patient’s need to consult healthcare services, which in itself could be empowering.
Limitations One methodological aspect of this study that potentially could be conceptualized as a shortcoming concerns the issue of memory. That is, there were a few years of delay between the diagnostic workup and the time when patients were interviewed. It is possible that VOLUME 36 | NUMBER 6 | NOVEMBER/DECEMBER 2013
a certain degree of memory bias may have influenced how patients made sense of their experiences. Memory bias is a validity issue that could be seen as a “temptation” for participants to reconstruct experiences and perhaps emphasize positive memories rather than being objective. This notion implies that patients’ accounts of reality could be questioned in terms of authenticity. However, this issue is most and foremost an epistemological dilemma and objects the notion that memory represents a bias of a “true” or universal reality. Instead, it is argued that experience is created through language and reflection. The way in which participants make sense of their experience is, in this sense, independent of the time between diagnostic workup and interview. Another issue of concern relates to how validity is handled. In other words, do the data actually represent patients’ experiences? This dilemma was partly managed by means of using a methodology whereby collaboration between different researchers was undertaken, and the themes and analysis that was arrived at were calibrated and compared with each other. In addition, an awareness and focus on how reflexivity was used has been emphasized to enhance validity. In this study, researchers with different backgrounds were involved (i.e., nurses, physicians, and a psychologist). These individuals were of varied age and gender and also differed in terms of their perspectives and experiences of IBS patients. These varied vantage points were explicitly discussed and reflected upon throughout the course of this study in terms of the implication for collecting and analyzing data.
Implications for Practice Healthcare professionals who encounter patients with IBS should hold nonjudgmental attitudes and should be aware of the patients’ sensitivity for such attitudes. Instead of performing extensive diagnostic workups (i.e., having to find a medical diagnosis), professionals must accept uncertainty and lack of treatment solutions, instead putting emphasis on alleviation of symptoms and personalized support in learning how to live with IBS. Assessment and followup in IBS should facilitate a care environment whereby staff (physicians, nurses, psychologists, nutritionists, etc.) is knowledgeable about IBS in a broad sense and have education competence including an authentic interest in supporting these patients in coping with daily life.
Conclusions The diagnostic workup did not necessarily result in any medical findings, but the validation of the patients’ IBS experience implied that patients could easier come 449
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to terms and cope with their difficulties. In such context, patients with IBS appear to find their individual solutions to cope with their everyday experiences and enhance their autonomy as patients and as persons. In some patients, however, abnormalities in the tests suggesting abnormal GI function were found. The abnormalities were used to explain mechanisms underlying the symptoms during the follow-up visit with the gastroenterologist, and this link was often considered as being helpful by the patients. Irritable bowel syndrome care programs should emphasize the importance of partnership between patients and healthcare professionals whereby familiarity and consistent relationships with healthcare professionals across time are present. Existing knowledge about abnormal GI function in IBS patients as a group could be used as a basis to discuss mechanisms underlying symptoms with the individual patient. ✪
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Halpert, A., Dalton, C. B., Palsson, O., Morris, C., Hu, Y., Bangdiwala, S., & Drossman, D. (2007). What patients know about irritable bowel syndrome (IBS) and what they would like to know: National survey on patient educational needs in IBS and development and validation of the patient educational needs questionnaire (PEQ). American Journal of Gastroenterology, 102(9), 1972–1982. Kellow, J. E., Eckersley, C. M., & Jones, M. P. (1991). Enhanced perception of physiological intestinal motility in the irritable bowel syndrome. Gastroenterology, 101(6), 1621–1627. Kennedy, A., Robinson, A., & Rogers, A. (2003). Incorporating patients’ views and experiences of life with IBS in the development of an evidence based self-help guidebook. Patient Education and Counseling, 50(3), 303–310. Lacy, B. E., Rosemore, J., Robertson, D., Corbin, D. A., Grau, M., & Crowell, M. D. (2006). Physicians’ attitudes and practices in the evaluation and treatment of irritable bowel syndrome. Scandinavian Journal of Gastroenterology, 41(8), 892–902. Larsson, M. H., Simren, M., Thomas, E. A., Bornstein, J. C., Lindstrom, E., & Sjovall, H. (2007). Elevated motility-related transmucosal potential difference in the upper small intestine in the irritable bowel syndrome. Neurogastroenterology and Motility, 19(10), 812–820. Longstreth, G. F., Thompson, W. G., Chey, W. D., Houghton, L. A., Mearin, F., & Spiller, R. C. (2006). Functional bowel disorders. Gastroenterology, 130(5), 1480–1491. McCormack, B., Karlsson, B., Dewing, J., & Lerdal, A. (2010). Exploring person-centredness: A qualitative meta-synthesis of four studies. Scandinavian Journal of Caring Sciences, 24(3), 620–634. Mead, N., & Bower, P. (2000). Patient-centredness: A conceptual framework and review of the empirical literature. Social Science & Medicine, 51(7), 1087–1110. Meadows, L. M., Lackner, S., & Belic, M. (1997). Irritable bowel syndrome. An exploration of the patient perspective. Clinical Nursing Research, 6(2), 156–170. Moayyedi, P., Ford, A. C., Talley, N. J., Cremonini, F., FoxxOrenstein, A. E., Brandt, L. J., & Quigley, E. M. (2010). The efficacy of probiotics in the treatment of irritable bowel syndrome: A systematic review. Gut, 59(3), 325–332. O’Sullivan, M. A., Mahmud, N., Kelleher, D. P., Lovett, E., & O’Morain, C. A. (2000). Patient knowledge and educational needs in irritable bowel syndrome. European Journal of Gastroenterology & Hepatology, 12(1), 39–43. Ohman, L., & Simren, M. (2007). New insights into the pathogenesis and pathophysiology of irritable bowel syndrome. Digestive and Liver Disease, 39(3), 201–215. Posserud, I., Syrous, A., Lindstrom, L., Tack, J., Abrahamsson, H., & Simren, M. (2007). Altered rectal perception in irritable bowel syndrome is associated with symptom severity. Gastroenterology, 133(4), 1113–1123. Smith, J., Flowers, P., & Larkin, M. (2009). Interpretative Phenomenological Analysis: Theory, Method and Research. London, England: Sage. Spiegel, B. M., Gralnek, I. M., Bolus, R., Chang, L., Dulai, G. S., Naliboff, B., & Mayer, E. A. (2005). Is a negative colonoscopy associated with reassurance or improved health-related quality of life in irritable bowel syndrome? Gastrointestinal Endoscopy, 62(6), 892–899. Spiller, R., Aziz, Q., Creed, F., Emmanuel, A., Houghton, L., Hungin, P., & Whorwell, P. (2007). Guidelines on the irritable
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bowel syndrome: Mechanisms and practical management. Gut, 56(12), 1770–1798. Tornblom, H., Van Oudenhove, L., Sadik, R., Abrahamsson, H., Tack, J., & Simren, M. (2012). Colonic transit time and IBS symptoms: What’s the link? American Journal of Gastroenterology, 107(5), 754–760.
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Whitehead, W. E., & Palsson, O. S. (1998). Is rectal pain sensitivity a biological marker for irritable bowel syndrome: Psychological influences on pain perception. Gastroenterology, 115(5), 1263– 1271. Willig, C. (2008). Introducing Qualitative Research in Psychology (2nd ed.). Maidenhead, England: Open University Press.
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The Importance of a Person-Centered Approach in Diagnostic Workups of Patients With Irritable Bowel Syndrome A Qualitative Study
ABSTRACT The aim of this study was to explore experiences of undergoing a diagnostic workup in patients with irritable bowel syndrome (IBS) at a unit for functional gastrointestinal disorders. Research has been sparse in addressing such experiences and the impact on well-being. Patients with IBS were invited to perform a workup of gastrointestinal tests. Of 120 patients who completed the tests, 20 were invited for an interview. Analysis of interviews was conducted through interpretative phenomenological analysis. One master theme emerged: validation of IBS experience inferred from three subthemes: the duality of suffering in IBS, coping with inflicted discomfort and pain, and capacity for resilience. Patients reported long-term suffering from symptoms including poor management within the healthcare organization. Despite inconvenience associated with the tests, patients expressed appreciation for professional attributes such as attentiveness that were perceived as a sense of being cared for and seen as a “person.” During the workup, patients acquired greater knowledge of what IBS means, including knowledge about their own body functions and experienced relief that symptoms were not caused by any “dangerous” disease. Validation of IBS experience surfaced in the data implying that in such context, patients with IBS appear to find personal solutions to cope with everyday experiences and enhance autonomy.
I
rritable bowel syndrome (IBS) is a functional gastrointestinal (GI) disorder with a prevalence of approximately 3%–20% (Grundmann & Yoon, 2010). Irritable bowel syndrome is defined as a chronic condition characterized by a combination of abdominal pain or discomfort and altered bowel habit (Spiller et al., 2007). Besides the suffering that IBS
symptoms arguably inflict, there are numerous empirical studies that have linked IBS to work absenteeism, reduced quality of life, and psychological distress. Furthermore, there is to date no drug or medical remedy that has been shown to cure IBS symptoms (Kellow, Eckersley, & Jones, 1991; Whitehead & Palsson, 1998).
Received March 27, 2012; accepted June 27, 2012.
Magnus Simrén received unrestricted research grants from Danone and AstraZeneca and served as a Consultant/Advisory Board member for AstraZeneca, Danone, Novartis, Almirall, and Shire/Movetis.
About the authors: Gisela Ringstrom, PhD, RN, is Head Nurse, Department of Internal Medicine, Institute of Medicine, Sahlgrenska Academy and University of Gothenburg Centre for Person-Centered Care (GPCC), University of Gothenburg, Gothenburg, Sweden. Henrik Sjovall, PhD, MD, is Professor, Department of Internal Medicine, Institute of Medicine, Sahlgrenska Academy and University of Gothenburg Centre for Person-Centered Care (GPCC), University of Gothenburg, Gothenburg, Sweden. Magnus Simrén, PhD, MD, is Professor, Department of Internal Medicine, Institute of Medicine, Sahlgrenska Academy and University of Gothenburg Centre for Person-Centered Care (GPCC), University of Gothenburg, Gothenburg, Sweden. Eva Jakobsson Ung, PhD, RN, is Senior Lecturer and Associate Professor, Institute of Health and Care Sciences, Sahlgrenska Academy and University of Gothenburg Centre of Person-Centered Care (GPCC), University of Gothenburg, Gothenburg, Sweden.
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This study was supported by the Swedish Medical Research Council (grants 13409, 21691, and 21692), The Marianne and Marcus Wallenberg Foundation, University of Gothenburg; Centre for PersonCentered Care (GPCC), Sahlgrenska Academy, University of Gothenburg; the Faculty of Medicine, University of Gothenburg; and The Health and Medical Care Committee of the Regional Executive Board, Region Västra Götaland. The other authors declare no conflict of interest. Correspondence to: Gisela Ringstrom, PhD, RN, Department of Medicine, Institute of Medicine, Sahlgrenska Academy and University of Gothenburg Centre for Person-Centered Care (GPCC), University of Gothenburg, Gothenburg, Sweden ([email protected]). DOI: 10.1097/SGA.0000000000000011
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Given its prevalence and the medical enigma that IBS constitutes, the relatively large number of studies that this domain has accumulated seems warranted. Studies with quantitative research approaches have by large focused on the etiology of IBS (Ohman & Simren, 2007) and various interventions aimed at symptom reduction (Ford et al., 2008; Ford, Talley, Schoenfeld, Quigley, & Moayyedi, 2009; Moayyedi et al., 2010). Studies with qualitative research approaches have in contrast directed most attention toward the sometimes negative, judgmental, and problematic encounter that patients with IBS have with healthcare professionals, and the difficulties that living with IBS may imply including extensive focus on negative symptom experiences (Drossman et al., 2009; O’Sullivan, Mahmud, Kelleher, Lovett, & O’Morain, 2000). Although research and common sense suggest that IBS is a disabling and unpleasant condition, it might be useful to expand the number of vantage points employed when attempting to understand this phenomenon. One way of doing this is to shift focus to also incorporate conceptualizations that are adaptive and positive for patients. This approach has the advantage of establishing ways in which patients better can manage and reduce their symptoms and negative experiences. The aim of the current research is thus to explore the experience and meaning that IBS patients attribute to undergoing a diagnostic workup at a unit for functional GI disorders. This exploration will be permeated by a quest to explore how patients conceptualize this experience with regard to their own wellbeing. A further endeavor is to elucidate the means through which patients cope, adapt, and somehow manage what at face value would appear to be an invasive and precarious procedure.
Review of the Literature Pertinent research in IBS is (broadly speaking) assigned to those inquiries that are concerned with the difficult and problematic encounter with healthcare that patients with IBS may endure. In addition, several studies in this domain have been carried out within the remit of exploring patients’ quest, and seeking for a diagnosis and the answers that this endeavor may hold (Kennedy, Robinson, & Rogers, 2003; Meadows, Lackner, & Belic, 1997). Studies on satisfaction with healthcare provision among patients with IBS suggest that their self-perception as patients often is problematic and the time before diagnosis is challenging. Patients frequently report an array of concerns regarding their symptoms, but findings from pertinent studies suggest that healthcare providers often fail to make patients feel validated and taken seriously (Bengtsson, Ohlsson, & Ulander, 2007; Bertram, Kurland, Lydick, Locke, & Yawn,
2001; Casiday, Hungin, Cornford, de Wit, & Blell, 2009; Hakanson, Sahlberg-Blom, & Ternestedt, 2010; Meadows et al., 1997). These suggestions are consistent with studies that have pointed out that patients tend to report a need to justify their medical concerns, the way in which this is attended to by the healthcare domain is unsatisfactory, and sometimes entail demeaning attitudes (Bengtsson et al., 2007). It is, therefore, no surprise that patients with IBS tend to report a sense of abandonment and frustration (Casiday et al., 2009). Many patients also report that their symptoms of IBS are associated with a sense of shame and taboo. There is consequently a reluctance to openly discuss these issues with healthcare professionals (Hakanson et al., 2010; O’Sullivan, et al., 2000). Obtaining a diagnosis of IBS is typically described as a confusing and frustrating process for both patients and physicians, which in part may be due to patients’ expectancy to receive more diagnostic tests than what clinical practitioners use (Bijkerk et al., 2003; Whitehead & Palsson, 1998). Studies also suggest that obtaining a diagnosis early is very important for patients with IBS (Bengtsson et al., 2007; Spiller et al., 2007). However, attitudes and clinical practice regarding the diagnostic process differ depending on the specific healthcare setting in which patients are seen (Lacy et al., 2006). Irritable bowel syndrome can be diagnosed on the basis of patients’ self-reported symptoms (Longstreth et al., 2006). However, to rule out medically more severe conditions, such as inflammatory bowel disease and cancer, patients with IBS may have to undergo invasive and relatively stressful procedures such as gastroscopy and colonoscopy. It is, therefore, understandable that patients report feeling frustrated when they are told that “nothing was found” (Spiegel et al., 2005). Many patients with IBS seem to hold misconceptions about their condition and are interested in learning more about the disorder (Halpert et al., 2007; Lacy et al., 2006). Given the fluctuating nature of IBS symptoms and the level of variance between different patients, it seems highly relevant to teach patients about their condition in a fashion that is personalized (Casiday et al., 2009; Hakanson et al., 2010; Spiller et al., 2007). In summary, the vast majority of the aforementioned studies have aimed to investigate the experience of living with IBS and how the patients experience their encounters within the healthcare system. In a previous study, patients with IBS were invited to perform a diagnostic workup. The aim was to find functional disturbances in the GI tract that might explain IBS symptoms. Although some research has
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been carried out regarding the satisfaction with healthcare in patients with IBS, little research has directly addressed patients’ experiences of undergoing a structured workup. The aim of the current study was, therefore, to explore the experiences of undergoing such procedures in patients with IBS as well as the implications for their well-being. Rather than proposing an increase in specialized healthcare for patients with IBS, this study strives to contribute to the overall knowledge base. The hope is that this, in turn, could enhance the way in which IBS patients are cared for within the healthcare structure in general and perhaps within primary care in particular.
Methods This study has adopted a qualitative methodology referred to as interpretative phenomenological analysis. Interpretative phenomenological analysis is a method concerned with exploring the meaning that people ascribe to major life events (Smith, Flowers, & Larkin, 2009; Willig, 2008) and is underpinned by phenomenology and hermeneutics whereby the use of the researcher’s interpretation is seen as a vital tool. The rationale for the chosen approach is the ambition to gain a deeper understanding of the meaning that patients assign to undergoing a structured diagnostic workup. The current research assumes an epistemological vantage point based on the premise that humans’ subjective and different ways of experiencing the world are valid and of equal importance as well as essential for increased knowledge within the scientific community. This notion is paired with a more realist perspective wherein it is acknowledged that some level of universally constructed reality may coexist with subjective experiences.
The Diagnostic Workup Between 2003 and 2007, 150 people diagnosed with IBS were invited to perform a structured diagnostic workup at a unit for functional GI disorders in Sweden. One hundred twenty patients completed the workup comprising the following: • Small bowel manometry and measurement of potential difference measurement as a measure of small intestinal motor and secretory function (Larsson et al., 2007). • Rectal balloon distension as a measure of rectal sensitivity (Posserud et al., 2007). • Oro-anal transit time measurement with radiopaque markers as an indirect measure of colonic motor function (Tornblom et al., 2012). • A follow-up visit with a gastroenterologist, where the results from the investigations were thoroughly VOLUME 36 | NUMBER 6 | NOVEMBER/DECEMBER 2013
explained and discussed with the patient. A personcentered approach was used during the visit, aimed at gaining a better understanding of the patients’ symptom experience and the impact on daily life. Moreover, the emphasis during the consultation was on trying to explain mechanisms underlying the symptoms and to discuss how the symptom burden could be reduced. Based on this, a treatment plan was initiated that could consist of pharmacological and nonpharmacological treatment options. During this visit, previous investigations and laboratory tests were reviewed, information about IBS was provided, and consequences of this diagnosis were discussed with the patient. The tests were performed by nurses and physicians. The workup comprised four visits with a duration ranging between 30 minutes and 6 hours during a period of 3 months. The patients were informed regarding the aim of the assessment.
Participants A sample of 20 patients of those patients who completed the workup as a whole were invited to an interview. The sample consisted of 16 women and four men (mean age 46 years, range = 27–74 years). All participants had long experience of living with IBS. The average IBS duration was 24 (range = 7–65) years.
Data Collection To capture participants’ lived experiences, data were collected by means of using semistructured interviews that provided participants with an opportunity to share their personal experiences with the researcher. Patients were asked to describe the experiential meaning of the diagnostic workup. The inputs that patients provided during the interviews were followed up with further probes to encourage participants to elaborate (Willig, 2008). The interviews were recorded on tape and transcribed verbatim.
Data Analysis The analysis was carried out using the following procedure: 1. The content of the 20 interviews was read individually by three of the authors a number of times to develop an impression of the experience of each participant. Wide-ranging and unfocused notes that reflected initial thoughts were thereafter made. 2. Following the initial engagement with the data, interviews were read systematically to identify themes. Each of the interviews was read line by line to capture what was represented in the text through thematic labels. Those themes that 445
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shared reference points were clustered (e.g., earlier experience of healthcare, experiences of the diagnostic workup, and consequences of the workup). A summary table was produced for each participant. 3. To obtain a generalized understanding of the participants’ experiences as a whole, the summary table for each participant was integrated into an inclusive list of themes. The process of integration was carried out in a cyclical manner whereby any emerging high-order themes were checked against the transcripts, ensuring that they were grounded in data. Following this procedure, one master theme was identified: validation of IBS experience comprising three superordinate themes: the duality of suffering in IBS, coping with inflicted discomfort and pain, and increased capacity for resilience. Throughout the aforementioned procedure, an emphasis on using interpretation as a tool for understanding was made. This interpretation has been permeated by the researchers’ understanding and previous clinical experience of IBS. These preconceptions have been used when interpreting the data that have emerged in conjunction with the epistemological stance that has been undertaken. To validate the interpretation and analysis of the data, the authors were working collaboratively during the course of analysis. Codes, constituent themes, and master theme were (a) simultaneously analyzed independently by the authors and (b) continuously compared until consensus was reached. Furthermore, similarities within and differences between the themes were judged by all the authors. To describe the results, data were arranged into themes in which the patients’ own words have been intertwined with the descriptions to strengthen the reliability of the results.
Ethical Considerations This study was carried out following approval from the Regional Ethical Review Board of the University of Gothenburg. Participants were informed about the purpose of the study and the procedure involved in the interview. Participants were also informed about their right to withdraw at any time that interviews would be tape recorded and transcribed, as well as the emphasis on removing all identifying details from interviews to ensure patient confidentiality. Both verbal and written consent were obtained at the time of the interview.
Results Through the analysis of data, one master theme emerged: validation of IBS experience. This master theme was inferred from three superordinate themes: the duality of suffering, coping with inflicted discomfort and pain, and capacity for resilience (Figure 1).
The Duality of Suffering in IBS This theme transpired through the analysis and is referring both to the suffering that patients had experienced in terms of their IBS symptoms, and to the suffering that was associated with being poorly managed and treated within the healthcare organization. Participants described a sense of negative estimation of themselves as problematic and bothersome patients. This view was verbalized as a notion of having received a “mock” diagnosis, which means that they in some ways feel like a hypochondriac. The symptom-related suffering, on the other hand, was experienced as cumbersome and impairing daily life during a lengthy course of time. Patients express having experienced a long journey through the healthcare system lasting several years with repeated visits to various general practitioners, specialists, and emergency departments when the
FIGURE 1. Patients’ experience of undergoing a diagnostic workup in irritable bowel syndrome (IBS). 446 Copyright © 2013 Society of Gastroenterology Nurses and Associates
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symptoms of IBS had become too intense. Patients sought an answer as to why they were affected by their symptoms without being given a satisfactory answer. One patient described this experience: I’ve asked for all the help available, I’ve been to all the available doctors, acupuncturists, and all the private practitioners who are involved in this, everything.
Patients also expressed that their encounters with healthcare professionals have been characterized by protocol-driven treatment, incompetence, and a highly limited amount of meaningful interactions with professionals. Subsequently, patients seem to have developed a lack of trust in competence of other caregivers in relation to the assessment and treatment of IBS. This includes things that were missed in earlier workups, perceptions that they were not properly examined, and criticism of the inadequate treatment of symptoms with drugs that rarely had the desired effect. Patients also spoke of having experienced a demeaning treatment in terms of patronizing symptoms or ascribing them to psychological distress. In some cases, this adverse treatment seems to have spiraled into what has been experienced as contempt by patients. One patient told: When I was visiting a doctor, I was told that I suffered from gastritis and that I should stop stressing. Now I have proof of what I am saying. I’m no longer dismissed.
Coping With Inflicted Discomfort and Pain When exploring this theme, it became evident that patients described feeling highly motivated and willing to undergo the workup. This willingness of participating was contextualized against the backdrop of patients’ negative experience when being treated in the healthcare system for their IBS symptoms in the past. Patients also depict that the tests in the workup were seen as invasive and painful and evoke feelings of panic, humiliation, and vulnerability. As one patient noted: The entire issue is controversial and surrounded by a taboo and these kinds of procedures are hence quite unpleasant. However, in order to get answers, you’re willing to put up with almost anything.
Another patient expressed a similar view: I did it in order to get a more endurable life.
As a means to contextualize the passages given earlier, some patients described manometry as a highly unpleasant procedure because they experienced a strong sense of suffocation, a strong urge to vomit, pain, and feelings of panic during the test. Furthermore, VOLUME 36 | NUMBER 6 | NOVEMBER/DECEMBER 2013
a number of patients regarded the rectal sensitivity test as painful, exposing, and humiliating. However, patients expressed that they did not experience the most important benefit to be the tests per se. Instead, the contact and relationships with health care professionals such as doctors and nurses were emphasized as being a vital aspect. This was exemplified by one patient who expressed: I did not benefit that much from participating in the workup as such but more so from meeting the staff at the gastrointestinal unit.
The pleasant atmosphere at the unit (i.e., calm and quiet) and the professional and respectful manner in which they were treated by staff brought about a spontaneously positive response from patients. That is, patients seem to have felt that they were genuinely understood and listened to and felt that they were well cared for in conjunction with the tests. Patients also seemed to have valued staff attributes such as being professional, open, welcoming, accommodating, and attentive. On the whole, this contributed to patients not feeling exposed. The follow-up discussion with a gastroenterologist was affirmative for patients, who expressed faith in the doctor’s expertise and their appreciation of the doctor’s commitment. One experience that patients appear to have perceived during the workup as particularly poignant and meaningful concerns the notion of being cared for and seen as a “person.” Irrespective of how they perceived the various aspects of the workup, patients appeared willing to undergo the workup again. However, some patients expressed their disappointment or surprise regarding the lack of objective findings.
Increased Capacity for Resilience When the patients were asked to explain in their own words what the workup meant for them, it transpired that it had widespread consequences in terms of their capacity for resilience. That is, patients acquired a greater knowledge of what IBS means to them and how their own body functions, and they felt relieved that symptoms were not caused by any “dangerous” disease. The data appear to suggest that the workup as a whole began as a learning process that generated knowledge that varied in nature. On the one hand, patients learned more overarching and theoretical aspects that increased knowledge of IBS in general. On the other hand, patients also gained concrete insight in terms of how their own body functions. Patients highlighted forms of learning such as information opportunities, explanations, dialogues, and the fact they were given the 447
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opportunity to ask healthcare professionals questions. One patient explained this as: Each time I was at the unit, I learnt a bit more. It helped a great deal. You are given so much information. It is through that specific information that I have gained a different perspective on my problems.
Of most importance for patients seemed to be that someone who was knowledgeable and trustworthy confirmed that their symptoms were not due to a malignant disease. Patients also seem to have appreciated that healthcare staff seemed thorough in terms of how they approached patients’ symptoms that provided a sense of fulfillment. Patients had experienced concern over a long period about the symptoms. In conjunction with the workup, they described a clear relief from distress. They were relieved and felt a sense of calmness. However, in this context, various attitudes emerged about being diagnosed with IBS. Some of the patients were of the opinion that IBS is a functional deviation and accepted that it is not always possible to demonstrate these deviations. One patient said: This IBS phenomenon isn’t anything really serious. The more serious conditions could be excluded.
Other patients felt happy and relieved that the workup indicated that they were not suffering from any serious disease, but found it more difficult to accept the lack of objective findings. One patient held this view: You’re really happy that they couldn’t find anything wrong although you still feel … good grief, I feel that something isn’t right, and so I’m still disappointed in a way that nothing could be found when I feel that there is something.
Validation of Their IBS Experience The notion of experiencing a sense of validation of IBS was a theme that in many ways surfaced in and instructed the data set as a whole. Patients stated that they felt their problems were confirmed as real and authentic and that “they could put a name to it.” Some patients spoke in terms of the workup showing that they were not hypochondriacs as one patient expressed: It’s not me that is imagining things as someone who is a hypochondriac would do. They found something, which is good. It was confirmed that it’s not something wrong with me.
Validation of IBS experience was also a theme that was considered to be closely linked to the superordinate themes that have been outlined previously. It clearly transpires throughout the data that suffering
and unpleasant experience were aspects of the overall “package deal” that patients appeared capable (and sometimes even willing) to endure provided that their experiences were validated as opposed to dismissed or treated in a demeaning manner. That is to say, patients appear to emphasize the experiential meaning of having encounters that as far as possible are absent from judgmental attitudes and protocol-driven treatment. In this sense, the key issue is arguably more about how a workup is conducted as opposed to what the different tests comprise. The diagnostic workup did not necessarily result in any objective findings, but the confirmation implied that patients could easier come to terms and cope with their difficulties, and perhaps most importantly, find their own unique solutions to manage their everyday experiences and enhance their autonomy as patients and as people. Overall, the workup was a turning point for many patients and they stated that they had acquired a different perspective on their problems. This meant that patients considered their situation as more manageable and felt more able to cope and also increased their capacity for resilience. One patient said: I have stopped ruminating. You learn how to handle it.
Discussion This study suggests that a person-centered approach to care is beneficial during diagnostic processes in patients with IBS, which seems to have a considerable impact on these patients’ well-being. All patients included in this study had long-term experience in terms of being treated within a healthcare structure. Previous research has also pointed out that these experiences are far from always positive (Bengtsson et al., 2007; Hakanson et al., 2010; Lacy et al., 2006). Many patients with IBS struggle to be acknowledged and treated in an adequate manner within the healthcare organization. Considering that patients with IBS often are anxious regarding their symptoms, this could serve to exacerbate an already-difficult situation. This means that patients with IBS are in a vulnerable position during their encounters with healthcare professionals. This study also transpired that despite the patients’ presumptions and experiences that they could be treated in a condescending and demeaning manner, patients were willing to carry out the diagnostic workup. Patients with IBS tend to be pursuing answers regarding their difficulties. This quest means that they are vulnerable in terms of the physical and psychological distress they might be exposed to as part of various medical procedures. However, in most patients with IBS, a minimum of medical procedures could be
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sufficient to confirm the diagnosis while it could be necessary to expand the assessment in some patients. Patients in this study had the experience of a lengthy referral process and hence appreciated ultimately being treated in an adequate and professional manner. Patients highlighted the importance of being diagnosed in an environment that was respectful and empathic. This, in combination with staff members’ high level of competence, was characterized as a positive turning point. This is consistent with previous research that has also proposed that it is overly simplistic to view this issue as being underpinned only by the interaction between physician and patient (McCormack, Karlsson, Dewing, & Lerdal, 2010). Instead, the current study suggests that the importance of being cared for in some ways could be conceptualized as a “package deal.” In this sense, it seems more important to embrace an ethos of personcenteredness during diagnostic workups rather than focusing on any particular instances or relationship. Furthermore, patients emphasized that interpersonal competence was ranked higher than technical and theoretical skills within the medical field. Patients reported a great deal of satisfaction with the insights and knowledge that they acquired during the diagnostic workup. Previous research suggests that patients with IBS have a varied need to learn about their condition and related symptoms. It has also been proposed that learning within an IBS context could be problematic in those instances when advice given by professionals is inconsistent with the physical experience of IBS (Hakanson et al., 2010). It is, therefore, essential to employ a person-centered approach whereby each patient is considered as an expert on their own individual experiences. This would, in turn, mean that information, teaching, and advice could be designed in ways that are tailored toward personal needs. Mead and Bower (2000) argue that patient-centered professionals need to carry their expertise “invisibly” if they want to be effective. They do not apply the information or knowledge of patients or provide information on how to behave to achieve change. Instead, the emphasis is on facilitating a care environment wherein patients are viewed as able to enhance their ability to manage symptoms more independently. The benefit of this approach rests upon the fact that enhanced patient autonomy would decrease the patient’s need to consult healthcare services, which in itself could be empowering.
Limitations One methodological aspect of this study that potentially could be conceptualized as a shortcoming concerns the issue of memory. That is, there were a few years of delay between the diagnostic workup and the time when patients were interviewed. It is possible that VOLUME 36 | NUMBER 6 | NOVEMBER/DECEMBER 2013
a certain degree of memory bias may have influenced how patients made sense of their experiences. Memory bias is a validity issue that could be seen as a “temptation” for participants to reconstruct experiences and perhaps emphasize positive memories rather than being objective. This notion implies that patients’ accounts of reality could be questioned in terms of authenticity. However, this issue is most and foremost an epistemological dilemma and objects the notion that memory represents a bias of a “true” or universal reality. Instead, it is argued that experience is created through language and reflection. The way in which participants make sense of their experience is, in this sense, independent of the time between diagnostic workup and interview. Another issue of concern relates to how validity is handled. In other words, do the data actually represent patients’ experiences? This dilemma was partly managed by means of using a methodology whereby collaboration between different researchers was undertaken, and the themes and analysis that was arrived at were calibrated and compared with each other. In addition, an awareness and focus on how reflexivity was used has been emphasized to enhance validity. In this study, researchers with different backgrounds were involved (i.e., nurses, physicians, and a psychologist). These individuals were of varied age and gender and also differed in terms of their perspectives and experiences of IBS patients. These varied vantage points were explicitly discussed and reflected upon throughout the course of this study in terms of the implication for collecting and analyzing data.
Implications for Practice Healthcare professionals who encounter patients with IBS should hold nonjudgmental attitudes and should be aware of the patients’ sensitivity for such attitudes. Instead of performing extensive diagnostic workups (i.e., having to find a medical diagnosis), professionals must accept uncertainty and lack of treatment solutions, instead putting emphasis on alleviation of symptoms and personalized support in learning how to live with IBS. Assessment and followup in IBS should facilitate a care environment whereby staff (physicians, nurses, psychologists, nutritionists, etc.) is knowledgeable about IBS in a broad sense and have education competence including an authentic interest in supporting these patients in coping with daily life.
Conclusions The diagnostic workup did not necessarily result in any medical findings, but the validation of the patients’ IBS experience implied that patients could easier come 449
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to terms and cope with their difficulties. In such context, patients with IBS appear to find their individual solutions to cope with their everyday experiences and enhance their autonomy as patients and as persons. In some patients, however, abnormalities in the tests suggesting abnormal GI function were found. The abnormalities were used to explain mechanisms underlying the symptoms during the follow-up visit with the gastroenterologist, and this link was often considered as being helpful by the patients. Irritable bowel syndrome care programs should emphasize the importance of partnership between patients and healthcare professionals whereby familiarity and consistent relationships with healthcare professionals across time are present. Existing knowledge about abnormal GI function in IBS patients as a group could be used as a basis to discuss mechanisms underlying symptoms with the individual patient. ✪
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