Authors

  1. Pihl-Lesnovska, Katarina MSc, RN
  2. Hjortswang, Henrik PhD, MD
  3. Ek, Anna-Christina PhD, RN
  4. Frisman, Gunilla Hollman PhD, RN

ABSTRACT

Crohn disease is a chronic inflammatory bowel disease of unknown etiology. The chronic, relapsing nature of Crohn disease produces physical, psychological, and social stress. The disease occurs early in life, and the effects of Crohn disease on daily life are associated with symptom burden; thus, managing their disease and coping with its impact is a lifelong process for sufferers. This study was undertaken to identify and describe the meaning of quality of life in patients with Crohn disease. Using a grounded theory methodology, 11 interviews were performed with 6 men and 5 women, 29-83 years of age, all suffering from Crohn disease. The experience of quality of life was associated with limitations in daily activity, the major theme that emerged from the analysis. Quality of life varied depending on how the patient managed limitations related to the symptoms of the disease. The categories of self-image, confirmatory relations, powerlessness, attitude toward life, and sense of well-being were conceptualized as the dominant themes derived from the data. When caring for these patients, it is important to identify limitations and provide support so that patients are able to maintain a daily life that can be perceived as normal and routine.

 

Article Content

Crohn disease is a chronic, relapsing inflammatory bowel disease of unknown etiology. Both environment and genes seem to play a role in its development. It is a relatively new condition, first described in the 1930s. Women run a 20%-30% greater risk of developing Crohn disease than men (Loftus, Schoenfeld, & Sandborn, 2002; Shivananda et al., 1996). Crohn disease is active throughout the lifespan and may recur in later age (Munkholm, Langholz, Nielsen, Kreiner, & Binder, 1992). Infectious illness at a young age may play a role in the development of Crohn disease as the patient ages (Ekbom, Helmick, Zack, & Adami, 1991). Women seem to be more concerned about all factors of their disease than men (Canavan, Abrams, Hawthorne, Drossman, & Mayberry, 2006; Kirsner, Sartor, & Sandborn, 2004; Larsson, Loof, Ronnblom, & Nordin, 2008).

 

Background

Living with a chronic, painful condition such as Crohn disease certainly contributes to emotional and mental suffering for the patients. Ninety percent of the patients believe that stress affects the severity of the disease (Canavan et al., 2006). Accordingly, it makes sense that psychotherapeutic interventions would be important when caring for Crohn disease sufferers.

 

Symptoms vary depending on what part of the gastrointestinal tract is affected and range from mild to severe. Severity of symptoms is also dependent on whether the patient is in remission or an active flare-up of the disease. Major symptoms include abdominal pain, diarrhea, fever, fatigue, weight loss, and bloody stools (Canavan et al., 2006; Larsson et al., 2008). Treatment focuses on the improvement of symptoms.

 

Clinical assessment is most often complemented by an analysis of laboratory test results and radiological and endoscopic examinations (Oliveira et al., 2007). Specific interventions are selected on the basis of disease extent and activity. Surgery is not a cure for Crohn disease. Patients who undergo surgery often have symptoms that remain. Two thirds to three quarters of patients with Crohn disease will need bowel surgery at some time (Kirsner et al., 2004).

 

Studies have shown that patients' quality of life (QOL) worsens during relapse. The most important concerns for patients are the uncertain nature of the disease, adverse effects of medication, having an ostomy bag, low energy level, and the possible need for surgery (Canavan et al., 2006). Studies have found that patients who have undergone surgery have a lower QOL (Graff et al., 2006; Norman, Kirchner, Lochs, & Pirlich, 2006; Ringel & Drossman, 2001). Alterations in QOL are also strongly related to symptom burden. For example, diarrhea, abdominal pain, and nausea all negatively affect QOL (Canavan et al., 2006; Larsson et al., 2008).

 

Symptom burden and disease activity are not the only factors that have an impact on health status and QOL among patients with Crohn disease. Mental status, culture, and social support also influence QOL (Larsson et al., 2008). There is a trend for patients who are diagnosed before the age of 30 years to have poorer QOL than for those patients who are diagnosed after the age of 30 years. Current age does not seem to affect QOL. It is equally poor in patients with established disease as in those newly diagnosed and directly correlated with disease severity (Larsson et al.).

 

There are limited qualitative studies on this topic, which is why this study was undertaken in an effort to more fully understand how patients with Crohn disease perceive their QOL. The aim of this study was to identify and describe the meaning of QOL of patients with Crohn disease.

 

Methods

To understand the meaning of the concept QOL for outpatients with Crohn disease, an inductive scientific approach was selected. Grounded theory has its roots in social processes and is influenced by symbolic interactionism. It this study, it provided a way of understanding how patients with Crohn disease perceive, interpret, and understand their world (Glaser, 1998; Lincoln & Guba, 1985; Patton, 1990). The methodological principles of grounded theory meet the fundamental requirements of empirical science. Through symbolic interactionism, the nature of the empirical social world among patients with Crohn disease can be discovered.

 

Symbolic interactionism is a down-to-earth approach to the scientific study of the human being. Symbolic interactionism is based on three premises. The first is that human beings act toward things on the basis of their meanings. The second is that the meaning of such things is derived from or rises out of the social interaction that one has with one another. The third premise is that these meanings are handled in and modified through an interpretative process used by the persons in dealing with the things they encounter.

 

In symbolic interactionism, the meanings that things (i.e., Crohn disease) have for the patients are central in their own right. The meaning of Crohn disease grows out of the ways in which the immediate personal environment acts toward the patients with regard to Crohn disease; the meaning is a social product (Blumer, 1986). For the researcher using a symbolic interactionism approach, the scientific process should begin with as few preconceived meanings as possible on the part of the researcher (Glaser, 1998; Lincoln & Guba, 1985; Patton, 1990).

 

Theoretical Sampling

Theoretical sampling and coding were performed in parallel according to the constant comparative method to find informants who could widen the categories as data collection progressed. Theoretical sampling is a deductive moment, when one informant was chosen to be as different from the previous informant as possible to achieve a wide range and diversity in the sample. After one interview was transcribed, read, and analyzed, the next informant was selected, with a goal to have that informant have different characteristics from the prior interviewee. Different background characteristics such as gender, age, education, time since diagnosis, surgical status, and background were purposeful variations in the theoretical selection to widen the discovery of categories (Glaser, 1998).

 

The theoretical strategic sampling was used among outpatients with Crohn disease at the gastroenterological clinic at a university hospital in southern Sweden. Inclusion criteria were as follows: 18 years or older, Swedish speaking, no comorbid illness, and willingness to be tape-recorded. Eleven informants (six men and five women), ranging in the age from 29 to 83 years were interviewed. One of 11 informants had an immigrant background (Table 1).

  
Table 1 - Click to enlarge in new windowTABLE 1. Demographic Characteristics of the Informants (

Procedure

According to grounded theory, one patient at a time was contacted, provided written information about the study, and invited to participate. One week after the initial contact, the author contacted the informants by telephone and inquired whether the informants would be willing to be interviewed. All informants were informed that taking part in the study was voluntary, and they could withdraw at any time. Informed consent was given verbally by each informant. An appointment was made including the time and place for the interview. Interviews were conducted in a private room at the hospital. Data were analyzed and compared with previously analyzed data before the next potential informant was contacted. Theoretical sampling continued throughout the data collection until saturation was reached after 10 interviews. One final interview was conducted wherein no new properties emerged.

 

Interviews

The first author conducted all of the interviews with informants. The interviewer was not wearing a nursing uniform during the interviews and was not responsible for care of the informants. The informants were asked whether they had any questions about the study or the interview before the interviews were carried out. The guiding question was: Would you please describe what quality of life means to you? Follow-up questions were designed to elicit information about how the disease affected the informants' life if this was not discussed spontaneously. Informants were encouraged to speak openly about their lives as Crohn disease sufferers. The interviews were tape-recorded and lasted 20-60 minutes. All interviews were transcribed verbatim. All data were treated confidentially.

 

Analysis

Constant comparative analysis was used, and data were analyzed through open coding. Data were compared, and after the open coding, the phase became selective. The occurrence of phenomena was used to establish codes (Glaser, 1998). The codes were compared and categories were formed, which identified the meaning of QOL for the informants. Data were reviewed repeatedly to be sure of their relevance to the named categories. A core category emerged to which the other categories were related. The core category emerged through categories being selectively coded. The codes were conceptualized and named. The author and second author analyzed all the interviews independently of each other and agreed to the categories and the core category as part of this process. During the data collection, the categories were reconceptualized to be sure they represented the collected data. Results are presented in a way that makes it impossible to identify any of the informants (Glaser).

 

Trustworthiness

Through theoretical sampling, the relationship between theory and data became strong and the selection flexible and thoroughly processed. Through the process, the two authors collaborated during the data collection and the analysis, and the other two authors read some of the interviews independently and confirmed the analysis. The authors reviewed the data and reached consensus about the analysis of the data. Empirically based data and "fitting examples" are presented to verify the trustworthiness (Glaser, 1998).

 

Ethical Considerations

Permission to implement the study was given by the head of the department at the University Hospital. The study has been carried out according to the guiding principles of the "Declaration of Helsinki." According to Swedish law (2003:460), no ethics approval from the ethics committee is necessary when there is no potential to influence the patient.

 

Results

Five categories emerged from the data: self-image, confirmatory relations, powerlessness, attitude toward life, and sense of well-being. All were related to the core category that was named "limitations."

 

Limitations

The analysis of the interviews showed that the meaning of QOL for patients with Crohn disease was to manage the limitations in life that related to the symptoms of the disease. To achieve QOL, informants revealed that they had to manage their limitations and find ways to cope. Limitations had different meanings to different individuals. Some turned them into positive expectations; for others, the limitations were barriers that were impossible to overcome. All informants experienced limitations related to their disease and symptoms that affected their QOL in some way.

 

As discussed, limitations and coping mechanisms were experienced very differently among the informants. There were limitations that led to decreased QOL for some of the patients, such as the continuous need to know where a toilet is, lack of energy, and constant worries about the future. By always having to consider their limitations elicited by the disease, a feeling of social isolation emerged.

 

Considering the early onset of the disease, limiting activities of different kinds was a source of disappointment. When informants compared themselves with others of the same age but were not able to engage in the same activities, they had a sense of failure for themselves and others such as next of kin and friends. Constant pain was a limitation for some of the informants. The pain itself limited activity in daily life; treatment was habit-forming. The fear of abuse and addiction on one hand and not being able to stand the pain on the other limited a person's existence. Informants tended to have high expectations of themselves and were afraid of letting other people down while not being able to live up to their own expectations and those around them.

 

Self-Image

Self-image is a category related to limitations. A person's limitation is connected with self-experience and the way one sees oneself. Some experience a loss of identity with respect to both work and the family. Persons who lose their identity in this way tend to self-identify with the disease. Altered body image can prevent them from participating in daily activities. "From always being the hub in the family, I am not of any use to anyone anymore" (Interview 9).

 

The need to have someone close and the desire to remain sexually active can vary in the face of an altered self-image. Crohn disease is not visibly disfiguring, and for some informants, this was a positive, because they were not forced to answer questions and talk about the disease that made it easier to forget, at least for a moment, their illness. Others said, however, that people doubted their illness was as severe as it was because it was not visible. Side effects of treatment affected their self-image; for example, many noted that they were prescribed corticosteroids, which resulted in rapid weight gain. Others felt depressed that they were so thin and stated that they wore baggy clothing to cover themselves up.

 

Some informants noted that they had been reacting with their stomach their whole life even before having a diagnosis; they expressed it as being "a bowel person." The reaction with their stomach was connected to stressful situations when there was pressure on themselves and demands from others. Being neglected was a part of self-image, not believing that other people took any notice of them despite being in the center of the experience physically. "But sometimes it's hard, to do things like, if you have to show your stomach" (Interview 11).

 

Confirmatory Relations

Confirmatory relations include a sense of confirmation, unconditional love, sex life, stress, dependency, consideration, adaptation, and being together. Being confirmed by other people is very important. Some informants received confirmation from their relatives and friends, whereas others got it from their colleagues and supervisor. Domestic animals (pets) also provided confirmation and unconditional love and support. The confirmation from an animal was experienced as unconditional, always being there, and just listening without any restrictions or judgment. Having a chronic illness such as Crohn disease elicited thoughts of and a fear for the future because it is hereditary. Roles and identities may change in families when a family member suffers from a chronic disease. "I have a really calm and secure family; I think that's why I manage my disease quite well. My work is a source of stress" (Interview 8).

 

Some informants experienced support from their work, and for others, it was a source of stress. How employers supported the informants so that they were able to work was very important. Confirmatory relations were important to all informants, regardless of whether they were in their private or work life. Despite the value of having confirmatory relations, at the same time it could elicit a sense of being a burden and dependency; in that context, confirmatory relations were a limitation. Informants expressed the importance of having healthcare professionals be accessible for conversations or other needs. Some said that they felt that they increased the burden if they discussed their worries about their disease with their next of kin. They did not want to worry them because of the fear of the disease being hereditary.

 

Powerlessness

A positive self-image, confirmatory relations, and how to conduct to oneself could affect a sense of powerlessness. Powerlessness is a sense of losing control of life because of the disease. Being aware of the threat, while living with a chronic disease and the uncertainty about treatment, extent, and activities, brings forth a sense of powerlessness. A fear of death, existential threats, and heredity also bring a sense of powerlessness. For some informants, engaging in routine activities but neglecting signals from the body was a way to repress having a chronic disease; however, this could lead to symptoms and complications of the disease, which, in turn, would engender a feeling of powerlessness.

 

The sense of powerlessness was also affected by side effects from treatment; it was expressed as a sense of weakness and feebleness. A person's inability to influence the care and the outcome of the disease elicited powerlessness. The informants who adopted strategies to affect the disease experienced less sense of powerlessness; for example, they tried different kinds of diets, conversational therapy, and complementary and alternative medicine.

 

Capacity to trust in oneself, having an inner strength, and a characteristic of persistency were abilities the informants believed helped one feel less powerless. "What concerns me is that it's a chronic and incurable disease" (Interview 5). The sense of powerlessness was dependent on their attitude toward life. If the attitude toward life was positive, informants tended to have fewer feelings of powerlessness. On the other hand, if their attitude toward life was negative, the feeling of powerlessness was almost overwhelming. "I am very tired, I am constantly very tired" (Interview 4).

 

Attitude Toward Life

Being able to cope and find meaning in life despite the disease was an important ability, as well as finding a way to handle daily life and adjust to new situations. Developing other interests was a way to improve QOL despite losing the ability to engage in old interests and activities. An important attitude toward life was to accept oneself and the disease.

 

To find meaning in life, informants noted that they needed to be positive, motivated, and engaged in their lives. The acceptance of adversity is easier if one has trust that there is the possibility that things will be resolved. Informants expressed that it was important to have a feeling of confidence in oneself and have a good self-esteem.

 

The informants noted that being free of symptoms made it easier to have a positive attitude toward life. Even those individuals who identified themselves with the disease and found it difficult to break through were able to gain a positive attitude toward life, which forced them to break old habits and patterns. Some informants, even when in remission, had difficulty relaxing and feeling secure, because the force of habit of being ill was so strong. It could take several months of remission before they dared to participate in activities. Some informants had been helped with gaining a different approach toward life through conversational therapy. "So I went out to my country house in the morning, but I had my infusions with me. I manufactured S-hooks which I hung in the backseat of my car and then I was seated in the driver's seat" (Interview 7).

 

Viewing life and attitude was important in the context of being able to change habits, live in the moment, adapt, and accept. The informants believed that stress and their attitude toward life affected the severity of the disease. Being able to have a positive attitude toward life made it possible to achieve a sense of well-being.

 

Sense of Well-Being

The things that brought forth a sense of well-being differed among the informants. Sense of well-being, however, was linked to QOL for the informants. QOL encompasses perception of oneself and others, attitude toward life, and a general sense of well-being. Being able to live a normal life, being free from symptoms, being affirmed by others, and receiving compassion were things that brought about well-being. "Otherwise when I don't have symptoms from my stomach so to speak, I have a good quality of life" (Interview 1).

 

Being able to make conscious choices in life increased the sense of well-being as did being able to eat any food at all, exercising, and engaging in activities that one was used to. Some experienced well-being when they were able to participate in as many activities as possible, whereas others reached well-being when they could relax. Diet was an important component to achieving well-being. Food was associated with social relationships and not being able to participate impaired the sense of well-being.

 

Discussion

Living with a chronic disease involves constant consideration to the limitations the disease conveys. The findings of this study broaden the knowledge of the meaning of QOL, especially health-related QOL, because living with a chronic disease such as Crohn disease can overshadow life as a whole. Greater health limitations and lower QOL have been observed in other groups of patients with chronic conditions, including cancer and obesity (Yabroff et al., 2007); however, it has also been shown that patients who are seriously ill had a positive attitude toward life and experienced a positive QOL (Bertero & Ek, 1993; Hollman, Gullberg, Ek, Eriksson, & Olsson, 2002). Living with Crohn disease and its limitations demands a great amount of courage to break the social isolation and socialize with others because of taboos around excrement and bowel symptoms.

 

In this study, self-image was an important dimension related to the capability of managing the limitations. Self-image is closely related to an individual's self-perception and contributes to QOL (Price, 2000). Research has shown that disease-related concerns and anxieties regarding body image and self-image were rated highly by patients. Having surgery increased concerns about body image (Canavan et al., 2006). Self-image is linked to body image, which is a mental picture of how the body should look, feel, and behave. It is also related to sexuality; medical side effects, surgery, or body image alterations can lead to decreased sexual capacity and feelings of sexual inadequacy (Price).

 

Confirmatory relations were identified as coworkers, family, peers, friends, and pets, and were important dimensions to help manage limitations. According to Naess' (2001) theory, QOL consists of four components: activity, self-trust, a basal feeling of happiness, and confirmatory relations. The confirmatory relations consist of intimate relations and friendship (Naess). Norman et al. (2006) found that medical services are improved by involving family and support persons in the care and interventions. Social support and confirmatory relations counteracted negative consequences and the limitations created by symptom burden (Larsson et al., 2008). Patients with a strong social support system reported a sense of control over the disease and had a lower stress level than those without a strong social support system (Cukor, Cohen, Peterson, & Kimmel, 2007; Sewitch et al., 2001).

 

The fact that Crohn disease is incurable and chronic elicited a sense of powerlessness among the informants. The uncertain nature of the disease, such as adverse effects of medication, low energy levels, possible need for surgery, and having to use an ostomy bag, is a major concern among patients with Crohn disease (Canavan et al., 2006). Among both relatives and patients with chronic conditions, feelings of limited control seemed to induce a sense of powerlessness (Fernandez, Reid, & Dziurawiec, 2006).

 

Symbolic interactionism approaches understanding of social life that focuses on how reality is constructed by active and creative actors through their interactions with others. People create meaning during social interaction, how they present and construct themselves, and how they define situations of copresence with others (which was related to remission periods among patients in this study). One of the central tenets is that people act as they do because of how they define situations (Blumer, 1986). The attitude toward life was related to how to handle stressful situations in daily life, defined as coping. Patients who do not cope well show maladaptive symptoms such as depression, social withdrawal, and adopting a dependent "sick" role (Moser, Oberwalder, & Wexner, 2003). Resources may be of a different nature such as knowledge, coping strategy, social support, religion, cultural stability, and preventive health orientation (Hollman et al., 2002). Having efficient coping strategies is significantly related to the experience of a good QOL (Jones, Wessinger, & Crowell, 2006). More effective coping strategies such as problem solving or seeking social support improved health status and daily function (Cukor et al., 2007).

 

The sense of well-being is closely linked to QOL (Naess, 2001). According to the holistic perspective, having a health characteristic is linked to a sense of well-being (Jones et al., 2006). QOL comprises well-being, social interactions, mental status, and attitude toward life (Ringel & Drossman, 2001). Overall, being free from symptoms affected the sense of well-being (Naess, 2001). There are different strategies to overcome limitations to achieve good QOL despite having a chronic disease or not, although it might be expected to be more important to have strategies to handle adversities in daily life when living with a chronic disease.

 

Grounded theory was an appropriate method of investigation because it aims to understand the social process. Through theoretical selection, informants from a group with the same diagnosis were selected. The selection of informants was used to find the heterogeneity in the group and to widen and fulfill the categories with maximum variation. Limitations of this study are that the cultural perspective could be wider; the study was performed in one university hospital in Sweden. In addition, the interviewer was dependent on how much and what the informant was willing to share. Interviews are a subjective form of investigation from both the informant's and researcher's perspectives, which may influence the analysis. All interviews took place at the hospital according to the patient's wishes, although it is an important aspect to consider that the environment might not be convenient from the patient's perspective. Trustworthiness was strengthened by the parallel analysis of data.

 

Clinical Implications

Patients living with Crohn disease are always aware of the possibility of flare-ups from the disease and even in remission; this fear is present. This study gives a new perspective on how patients with Crohn disease experience QOL. Our task as healthcare professionals might be to help the patients reduce their limitations in life related to the symptoms of the disease and increase their sense of well-being. As healthcare professionals, it is important to identify the patients' expectations, how they deal with them, what kind of support they have, and what kind of support we can offer. When providing the right type of support, we may affect these individuals' attitude toward life and how to handle their relationships with their confirmatory relations. Knowledge can support educating patients properly about their disease and the planning of care needs and treatment. By letting the patients actively participate in healthcare decisions, the patients achieve a greater sense of control over the disease and consequently less sense of powerlessness.

 

Conclusion

The findings of this qualitative study demonstrate that limitations affect QOL in patients with Crohn disease and reinforce the importance for healthcare professionals to meet every patient as a unique individual, allowing the patients to express what is important at that moment. Healthcare professionals need to be sensitive and responsive to patients' concerns about their disease on issues such as body image and feelings of isolation and of being a burden to others because of concerns about issues such as physical symptoms. Optimal care requires the establishment of an effective relationship between patient and healthcare professional.[circled white star]

 

ACKNOWLEDGMENTS

The authors thank the Faculty of Health Science, Linkoping University, and the Department of Endocrinology and Gastroenterology, University Hospital, Linkoping, for their collaboration on this study.

 

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