Deconstructing patients : A discourse analysis of IBD patients’ medical records

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Örebro University School of Medicine Degree Project, 30 ECTS 2017 May

Deconstructing patients

A discourse analysis of IBD patients’ medical records

(Version 2)

Autor: Fátima da Silva

Supervisor: dr. Louise Olsson, assistant professor Örebro, Sweden

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Abstract

Background: Inflammatory Bowel Disease (IBD) is a chronic, disabling, autoimmune disease that affects millions of people worldwide. It has a significant impact in patients’ quality of life, therefore, different aspects of patients’ lives should be appraised and registered in medical records.

Objectives: Patient-centered care approach implies a holistic view of the individual. The aim of this study is to investigate how well the whole concept is reflected in patients’ charts. Method: Discourse analysis of first time visit records of patients newly diagnosed with IBD. The research was conducted at the Central Hospital in Karlstad (CSK).

Results: Twenty-four medical records were studied. Seven themes and four sub-themes were identified in the analysis. The dimensions of patients’ life were rather restricted to specific points related to IBD symptoms. Efforts were made to adapt information to the patient. Patient’s active engagement in their treatment were not referred to in all narratives. Conclusion: The results suggests that the main approach in the narratives of the charts is biomedical allopathic rather than a holistic one. The lack of information on various levels of the patients’ social life, as well as to what extent their lives are being restricted by the illness prevents a better understanding of the person behind the disease. Although only 33% of the narratives explicitly mentions patients active role in their treatment, it is not possible to say whether or not the remaining 67% were effectively involved in the planning of their

treatment.

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List of abbreviations

IBD - Inflammatory Bowel Disease IBS - Irritable Bowel Syndrome

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1. Introduction

IBD (Inflammatory Bowel Disease) is a lifelong, chronic inflammatory, debilitating disease. The etiology of IBD is unknown but it is believed that environmental and genetic factors cause an immunological reaction and thereby inflammation in the intestine. IBD is divided into three groups, Crohn’s disease, ulcerative colitis (chief types) and microscopic colitis. The natural course of the disease involves remissions and flare-ups. The age for the diagnosis varies between 15-40 years and 55-65 years[1]. About 2.5 million Europeans and more than 1 million North-Americans are estimated to suffer from IBD[2]. The incidence of IBD is about 0.5 -24.5 cases/ 100 000/year for ulcerative colitis and 0.1-16 cases/100 000/year for Crohn’s disease [1]. In 2015 there were 50 000 people diagnosed with the disease in Sweden alone [3,4].

Symptoms such as diarrhea, abdominal cramps, and fatigue are most disabling. Studies show that IBD has a negative impact in the patient’s body image, perception of the world and quality of life. IBD patients have higher levels of psychiatric distress, somatosensory amplification, alexithymia, depression, and anxiety. Crohn’s disease and ulcerative colitis may render patients unable to partake in social activities and have a negative impact in family, friends and intimate partner’s relationships, all of these factors lead to a poor perceived

quality of life. [3,4]

IBD is managed with aminosalicylates, antibiotics, corticosteroids and immunomodulators. The objective of the treatment is to cause disease remission, healing of the mucosa and enhancement of quality of life [1].

The chain of care for these patients is composed by gastroenterologists, specialized nurses, nutritionists, GP, and, depending on the gravity of the disease, surgeons. All the encounters between patients and healthcare personnel are registered in a data system.

The medical record is a technical aid that contains information about a patient’s health status, personal circumstances and planning of future measures. It is also a means of communication: even those who never have met the patient before should be able to use the information given to decide what measures are needed to be taken to help that specific patient. Thus, the more

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detailed picture of the patient shown in the charts, the more suitable individual help can be offered by those involved in the healthcare chain.

1.1 Holistic care and narrative medicine

Today the healthcare system in Sweden is patient-centered which means that patients should get actively involved in their treatment. To reach this goal it is laid on doctors and other health professionals the responsibility of informing, instructing as well as listening to patients and providing to their individual needs. To listen to patient’s individual needs and try to meet them is to have a holistic perspective [5,6]

Narrative based medicine is a qualitative tool and a medical approach that singles out narrative in clinical practice [7,8]. It focuses on how illness affects patients in different aspects i.e psychologically, and socially in addition to biomedicine. The goal is to treat patients as unique individuals rather than offering disease management based only on symptoms. Therefore, this approach goes hand in hand with patient-centered care. Studying the narrative that emerges in patient’s medical records can reveal how well a patient-centered-care is reflected in reality.

1.1.2 The importance of a holistic approach to patients with IBD

Patients diagnosed with IBD experience a restricted life in many aspects. They are very cautious about their eating habits in order to avoid triggering the disease. Incontrollable bowel movements make them visit the bathroom several times a day. Most patients feel compelled to keep track of nearby toilets when outside their homes. Many fear fecal incontinence and foul body odor, which in turn leads to isolation from social activities. Sleep disturbance due to pain is a common occurrence. The disease also affects other parts of the body leading to joint and back pain. They have to make adjustments in their working and studying life. They have an increased frequency of psychiatric illness such as depression and anxiety, which in turn influences the path of IBD course [9–15]. Thus, the quality of life of IBD patients can be severely affected by the illness. Therefore, not only biomedical but also other different aspects of patients’ life should be considered and evaluated during medical assessment.

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Researches show that almost 50% of European physicians do not ask IBD patients about their quality of life [16]. In addition to it, due to diverse psychosocial factors, patients may fail in opening up to their doctors, and some can even minimize their symptoms [14].

The first visit after the diagnosis takes about one hour. It seems then to be a suitable time to discuss with the patients how IBD affects different parts of their lives. The information gathered and then passed on the first record may set the tone for further treatment along the health chain. In this way, patients’ specific needs can be better met.

2. Objective

This study centers on the analysis of narratives of charts from first visit patients, immediately after they have been diagnosed with IBD, i.e Crohn’s disease and/or ulcerative colitis. When writing a medical record, the doctor must re-tell the patient’s story and in so doing she/he must apply a narrative reasoning. These narratives are the basis of clinical decision making [17]. The aim of this study is to see what kind of narrative emerges from the text. The purpose is to find answers to the following questions:

1. To what degree a biomedical allopathic focus combines with the holistic approach? 2. Does the narrative in the chart depict the patient as a unique person behind the

disease?

3. Are patients seen as active or passive actors in the treatment process?

3. Material and method

This is a qualitative study that uses discourse analysis as a method. The method consists of the study and analysis of specific patterns that emerge in communication using language, and how these patterns depict a conception about the world or aspect of the world [18,19]. In the field of medicine and healthcare discourse analysis is usually applied to much larger corpora such as interviews, questionnaires, recording of meetings between patients and doctors or between members of the healthcare staff. Due to the scope and nature of this essay a smaller material is used. To all intents and purposes of this work discourse is then defined as a written communication that depicts a narrative, in this case a narrative about patients and their afflictions [20,21] .

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The study was conducted at the gastroenterology clinic at the Central Hospital in Karlstad (Central Sjukhuset Karlstad, CSK). The clinic is composed of seven doctors (3 chief doctors, 2 specialist doctors, 2 doctors doing specialization) and six nurses.

The gathering of the material took place between 13th_{February and 10}th_{March 2017. New} visit records were selected after a search in the Cosmic booking system. The search was limited to the year 2016. The distribution of diagnoses for the first time visits can be seen in fig. 1. In total 274 patients were identified as first visit patients at the clinic, of those 23 records were included in the study (fig.2). Microscopic colitis was excluded from the study for two reasons. The first was the need to limit the material to a manageable amount. The second was its course and clinical nature which differs from ulcerative colitis and Crohn’s disease. In microscopic colitis the histology becomes normal and the symptoms cease within 38 months in 80% of all cases [22].

Fig.1. Total distribution of diagnoses for the first time visits at the gastroenterology clinic at CSK (%)

62% 38%

Distribution of diagnosis for first time

visits to the gastro clinic at CSK (%)

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Fig.2 Distribution of first time visits and their respective diagnoses The distribution of patients included in this study is shown in table 1:

Table 1. Distribution of patients according to sex, mean age and diagnosis Sex Mean age and

standard deviation (SD)

Diagnosis CD UC

M (11) 48.1 (SD = 18.11) 1 10 K (12) 50 (SD = 20.8) 1 11

Seven doctors, six males and one female, were the authors of the charts studied. The Central Hospital of Karlstad uses Cosmic data program. The program has a set of modules for different registers to be chosen by the doctors as they see fit their purposes for a specific encounter. For instance, there is a module for charts of first time visits. It offers options to be chosen according to what the doctor considers to be important for their patients. The result is a narrative text that contains and communicate a patient’s history and story to all the future health care providers the patient might meet during further treatment.

Once the charts were selected, guidelines established for qualitative analysis were followed [18,23]. The charts were then copied and de-identified. The texts were broken down,

sentences, phrases and words of relevance such as verbs, adverbs, adjectives were hand-coded

New visits (274)

IBD (105)

Previously diagnosed (46)

Waiting for exams for final confirmation of diagnosis/unespecific

IBD (15) First time confirmed microscopic colitis (20)

First time confirmed Crohn's disease/Ulcerative

colitis (23)

4. Ethics

The project was presented to the Medicine clinic at Central Hospital of Karlstad and

approved. Following the guidelines of the National Patient Overview, the researcher and the head of the clinic signed an assignment agreement that allowed the conduction of the study at the clinic. Following the current legislation (D nr: Ö 28-2016), an application to the Ethical Review Board was not submitted. The justification lies in that, despite the violation of integrity, these kinds of studies, bring no harm upon patients, do not impose a threat to their safety, and do not influence their treatment in any way. The results found are not published in any journal so they do not become public. Such studies can also can be seen as a lead to improvement of the healthcare provided and, therefore, an approval from the Ethical Review Board is not considered to be necessary.

Patients were not asked for their consent, nor were they given information about the study. However, patients’ integrity is respected and kept throughout the process. No specific aspect that could reveal the patient’s identity is given in the examples provided, only the researcher has had access to the charts used in the study. The records were de-identified in order to preserve patient’s confidentiality rights.

The doctors’ integrity was also maintained; their identities are revealed only to the researcher. The examples chosen to be shown in the study are language neutral, concealing in this way their personal style, and therefore, no doctor can be singled out and/or identified.

5. Analysis

In order to reach a better understanding of the problems faced by IBD patients, how the disease affect their lives and how physicians handle these patients four studies were consulted [14,16,24,25]. These studies laid the basis upon which the discourse analysis was conducted. In healthcare holistic perspective means that five dimensions must be taken into

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psychological status [26–28]. The goal is to help patients make informed decisions as well as taking responsibility for their own health.

Based on the above explained, seven themes and four subthemes were identified (see table 2) Table 2. Themes and sub-themes emerged from the medical narratives

Theme Sub-theme

Social aspects of life

Wellbeing Psychological distress

Impact on daily life Disability

Social support Patient education

Reaction during consultation Patient’s concerns

Choice and autonomy Individualization of the treatment

The distribution of the themes and sub-themes is shown in the table below: Table 3. Summary of the findings

Theme Number of charts (%) (n=23)

Social aspects of life 65%

Wellbeing 91%

Impact on daily life 100%

Social support 4%

Patient education 73%

Reaction during consultation 17%

Choice and autonomy 34%

Sub-theme Psychological distress 17%

Disability 9%

Patient’s concerns 9%

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6. Results

6.1 Social aspects of live

The theme social aspects of live is concerned with family, work, and study.

Fifteen charts take up the aspects of either family, marital status or both as shown in the exemples below:

“Lives at parents’ house” (Bor hemma hos föräldrarna.) ”Single. Adult children.” (Ensamstående. Vuxna barn.) “Married. Two children.” (Gift. Två barn.)

“Lives alone” (Ensamboende.)

Patients’ jobs/school are mentioned in 15 records of 23. 6.2 Wellbeing

This theme present in almost all records (21). It is seen in expressions that report how the patients are feeling after the treatment or related to the patient’s experience of pain: “[Patient is] feeling well.” ([Patienten] mår bra.)

“[Patient] experiencing excellent effect.” ([Patienten] upplever utmärkt effekt.)

“slightly better during Christmas, again a little worse after New Year” (Något bättre under jul, lite sämre efter nyår ånyo).

6.2.1 Psychological distress

The issue of psychological distress was addressed in four charts. The topic was expressed in two ways, directly or indirectly.

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“Feels very liberated again after his previously handicapping needs of keeping tracks of [nearby] toilets” (Känner sig väldigt befriad igen efter sitt tidigare handikappande behov av att hålla koll på toaletter);

“Admits however that he sits [when defecating] and is more conscious than usual now” (Bejakar dock att han nog sitter och känner efter mer än vanligt nu).

Directly:

“Experiences a lot of stress in relation to the new job” (Upplever en del stress i samband med nya jobbet);

“suffers from depression” (har depression).

6.3 Impact on daily life

The evaluation of the impact of IBD on daily life is made through references concerning patients’ visits to the toilet, quality of the stool, or pain:

“had to run to the toilet up to 5-6 times per hour” (fått springa på toaletten upp till 5-6 gånger i timmen);

“increased number of up to 6 stools a day” (ökad avföringsfrekvens upp till sex avföringar per dag)

“has had for the last 3-4 moths (…) stool that is a little loose and red blood in it” (haft senaste 3-4 månaderna (…) lös avföring och rött blod I avföring)

“intermittent pain especially under the right arcus” (intermittenta buksmärtor framförallt under höger arcus)

”three weeks history of bloody and mucous diarrhea. A lot of pain in the stomach” (tre veckors anamnes av diarréer med blod-och slemtillblandning. Mycket ont i magen) 6.3.1 Disability

This subtheme is related to fatigue and lack of energy, which are consequences of IBD. Only two charts mention disability:

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“[Patient] experiences, however, that the disease makes her more tired now.” ([Patienten] upplever dock att hon blir mer trött av besvären nu.)

”The patient describes a long lasting fatigue and lack of energy. Recently, reduced physical condition. (…) Considering that the patient suffers from a long lasting fatigue, a sick leave certificate will be issued” (Patienten beskriver en långvaring trötthet och orkeslöshet. Nedsatt fysisk kondition senaste tiden. (…) Med tanke på patientens långvariga trötthet skrivs

sjukintyg också.)

6.4 Social support

Of the 23 narratives studied, one mentions family social support:

“Close contact and support from the parents” (Nära kontakt och stöd av mor och far)

6.5 Patient education

The theme patient education is identified in 17 charts. Information was given in three ways: oral, written, oral and written form:

Oral information:

“We discuss the disease in general as well as its course. [I] inform about endoscopy control (…)” (Vi diskuterar översiktligt sjukdomen och dess förlopp. Informerar om kontrollskopier” ”General information about the disease” (Får översiktlig information om sjukdomen.)

Written information:

”[Patient was given] a brochure about ulcerative colitis” ([Patienten] fått broschyr om ulcerös kolit”

Written and oral information:

“The patient is given thorough oral and written information about ulcerative colitis.” (Patienten får en noggrann muntlig och skriftlig information om ulcerös kolit.”

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”[I] explain the background of ulcerative colitis, [the patient] is given an information brochure.” (Förklarar bakgrund till ulcerös kolit, får informationsbroschyr.)

The remaining eight narratives did not mention any kind of information given to the patient.

6.7 Reaction during the consultation

This theme refers to patient’s feedback to the doctor about during consultation. The feedback is reflected in the narratives as words of agreement, satisfaction, or skepticism. Patients’ reactions are mentioned in four charts:

“The patient seems to be quite well prepared and understand his illness.” (Patienten verkar vara ganska påläst och införstådd med sin sjukdom.)

”The patient understands well and is satisfied with the information [given].” (Patienten väl införstådd och nöjd med [givna] informationen.)

“The patient is satisfied with the [treatment] planning” (Patienten är nöjd med planeringen) “[The patient] is very skeptical of drugs and wants to wait [with the treatment].” ([Patienten] är väldigt skeptisk mot läkemedel och vill gärna avvakta [med behandlingen].)

6.7.1 Patient’s concerns Two charts address this issue:

“The patient is planning to travel abroad (…) during two months, we shall see if this is

possible.” (Patienten planerar en två månaders utlandsresa (…), får väl se om det går att ordna till.”

”(…) We talk a little about the connection between IBD and IBS.”

6.8 Choice and autonomy

This theme is revealed by sentences that suggest agreement accomplishment or dialog between patient and doctor, patient’s decision or consideration about medication. It is identified in 8 charts:

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“We agree upon that (…) does not need to continue with Asacol enema.” (Vi kommer överens om att (…) inte behöver fortsätta med Asacol klyx.)

”It is possible that (…) would feel better with tricyclic antidepressants or Lestid but we refrain from this kind of treatment for now.” (Det är möjligt att (…) skulle må bra av tricyklika [sic] alternativt Lestid men vi avstår från behandling just nu.)

“We talk about the treatment.” (Vi pratar om behandlingen.)

“[I] offered to the patient maintenance treatment with Asacol, but [the patient] is very skeptical against drugs and would like to wait. [Patient] feels it is better if [the patient] calls us in case of a new flare-up, then can the treatment start.” (Erbjuder patienten

underhållsbehandling med Asacol, men hen är väldigt skeptisk mot läkemedel och vill gärna avvakta. Tycker själv att det känns bäst att hen hör av sig om hon upplever att hen får ett nytt ”skov” och att man då initiera behandling.)

”[Patient] does not wish to take iron tablets.” (Önskar inte ta järntabletter.)

In the remaining 17 narratives, the theme was not brought up. It is documented, however, what kind of medication the patient is on:

“[Patient told to] downsize the steroids. Prescribed Asacol.” (Får trappa ner steroiderna. Insätts på Asacol.)

“[Prescribed] Asacol suppository 500 mg 1 X 2 for a month.” (får insatt sup Asacol 500 mg 1 X 2 I en månad.)

6.8.1 Individualization of the treatment

This theme is concerned with particular considerations that the doctors made about their patients’ specific needs at that point in time for the managing the disease. It appears in two charts:

“To me it is not obvious to start treatment once [the patient] has being doing fine for the last 10 years. (…) [I have] decided not to start with prophylactic treatment for now.” (För mig är det inte självklart att man ska sätta in behandling med tanke på att hen har klarat sig i 10 år. (…) Beslutar att inte sätta in någon profylaktisk behandling för närvarande.)

”It seems that treatment with rectal suspension does not work well for this patient. (…) [I] refrain from rectal treatment. (…) Clear instructions about drug escalation [is given].” (Tycks

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fungera dåligt för patienten med behandlingen med rektalsuspension. (…) Avstår någon rektalbehandling. (…) Tydliga instruktioner kring medicinupptrappning.)

Table

7. Discussion

In healthcare, holistic perspective means that five dimensions must be taken into

consideration: patient’s disease, social situation, family, believe system, and psychological status [26], [4], [28].

Although the charts reveal important aspects of the patients’ social life, the picture of the person behind the diagnosis is incomplete. For instance, there was not a single register of patients’ extra social activities or mentioning about how the patients feel their disease affect their overall life.

68% of the narratives lift some aspect of patients’ social life, 38% do not. Except for one chart that tells about the patient having the support of the parents, none of the others brings up how the patient perceives his/her family situation or support in relation to the disease.

Sixteen charts stated the patient’s job situation but even here, there was no observation about how the patients felt IBD influences in their job performance.

Twelve charts did not raise the social aspects of the patient’s life at all. This prevents a holistic view is these charts.

In their narratives, most doctors understand wellbeing as how well the patients are feeling symptomatically mainly after they started the treatment. However, the fact that the patient is feeling better in relation to the illness symptoms, does not mean that he/she is socially or psychologically coping well with the disease. This is important to consider due to the fact that IBD can have a powerful negative impact on patients’ quality of life and psychological wellbeing [29]

Studies have shown that patients with IBD have higher levels of psychological distress [3,4]. Psychological stress can weaken the immune function and mucosal barrier [4].

The issue of psychological distress is seen in four charts. From these descriptions, the narrative of the charts offers a more personal and deeper picture of the patient in front of the physician.

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Besides psychological distress no mention about patient’s wellbeing in any other aspect of life is made anywhere in the charts. Thus, although the psychological distress noted in the

narratives contributes to reveal personal, individual traits of each of those specific patients, more information about patients’ wellbeing in other areas could contribute to a better understanding of each one of them in a broader aspect.

It is not possible to form an idea about the personalities of the remaining patients (22) because, as it was said before, the only wellbeing state registered is concerned with the presence or lack of symptoms. This points to a more biomedical allopathic focus than a holistic one.

When evaluating the impact IBD has on patients’ lives, aspects such as status of the disease, overall life and work impact should be taken into consideration [6]. In the records studied, this theme is related to daily interruptions in the patients’ lives due IBD symptoms.

Only one chart deals with patients’ inability to perform his job due to fatigue and lack of energy, none of the other narratives offers a consideration/evaluation of patients’ capabilities of performing activities in general.

It can be said that when considering the impact of IBD on patients’ daily lives, the narratives in the charts offers consideration on how the disease interrupts the patients’ day but do not consider to what extent it disrupts it. A way of appraising of how patients are coping with the illness could simply be asking them how they rate the quality of life at that specific point in time.

Studies have shown that IBD patients may feel the need of support from their surroundings such as family or work [3,30]. Social support is considered to have a positive influence on the quality of life of people living with chronic diseases [31].

Only one narrative mentions family support. None of the others charts touches the issue of social support in any area. This indicates an inconsistency with a holistic view of patients. A way of covering this issue is perhaps asking the patient if and in which area she/he feels the need of support.

According to the manual Your Duty to Inform Patients and Make Them Involved in Their

Treatment (Din skyldighet att informera och göra patienten delaktig – Handbok for

vårdgivare, chefer och personal) published by National Board of Health and Welfare [32], patients should be considered as co-actors in their own care. This goal is achieved by patient

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information and education. However, the National Board also points out that information must be individually adapted to each patient.

Of 23 narratives, 7 did not mention if the patient was given information or not.

Information was given in three different ways in the remaining 17 charts, suggesting that the doctors did try to adapt the information per patient. Information given orally does not mean, though, that it was in fact received. A common means of informing and educating patients is the use of written information such as brochures [33]. The handing out of brochures indicates that the doctor might have felt the need to give patient time to process the information when at home.

Four narratives tell about patients’ reactions during the visit. This helps the reader to see the patient in a different light, a more personal one. When registering patient’s reactions, the doctors offer a more nuanced idea about patient’s coping strategies, i.e acceptance or refusal of the illness.

Researchers have shown that IBD patients have many concerns or questions about how the disease may affect various aspects of their lives or its nature [34–36]. 92% of the analyzed charts do no discuss patients’ possible concerns. Two records (8%) handles this issue. In one of the charts the addressing of patients’ concerns reveals the close impact IBD has in the patient’s life and how it might interrupt this person’s future plans. In the other record, the narrative reveals a patient who is trying to understand the illness. In both cases, the texts offer an idea about how these patients are as individuals.

According to the Swedish National Board of Health and Welfare, patients must get involved in their own care. That means that their individual needs, values and preferences should be considered and respected.

Two narratives explicitly consider the patient’s individual needs. In total eight narratives touched upon the topic choice and autonomy. In the remaining 16 the theme was not brought up. It is documented what kind of medication the patient is taking, however, there is no mention about patients’ direct acceptance of or discussion about the treatment given. Therefore, it is not possible to say if the patients actively took part in the planning of their treatment or not.

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Their personal style of writing varies but the core content in the narratives is the same. The age of the patients did not seem to have influenced the way information given to the patients by the doctors.

8. Limitations

This study was based on the discourse analysis of written medical narratives of first time visit records of patients recently diagnosed with IBD. To the best of my knowledge, it is the first of its kind.

Doctors must filter their encounter with patients, they hear a story and then retell it. As any other writer, doctors must choose what should and should not go in the story about the

specific patient. What was observed here is then a filtered register of a brief encounter in time, a fraction of a bigger picture. Many factors might have influenced the doctors’ choices about what to tell in the charts. First, there is the issue of patient integrity. Sometimes doctors can choose to leave out information that if registered could violate patient’s integrity and damage patient/doctor relationship.

There are other factors that might have influenced the writing. A tight schedule might have led to a brief narrative, an interruption during the dictation due to an emergency might have resulted in some details being forgotten later and so on.

Usually, qualitative studies rely on larger corpora of material. Discourse analysis is normally applied to material gathered from interviews (with both patients and/or medical staff) or from the recording of a meeting between a doctor and a patient. Physical interaction as well as conversation pauses are considered and can be evaluated as a measure of validation of success or failure of medical consultation. Due to the nature of this essay, the material to be used had to be limited and small. Naturally, neither physical interaction nor dialogue, which are also ways of revealing and validating patient-centered care, can be accounted for in this study. Also, because the research is done in a specific clinic its results cannot be generalized. However, they can be used as a starting point to a discussion about holistic care and how it should be applied.

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9. Conclusion

The purpose of this study was to answer three questions:

1. To what degree a biomedical allopathic focus combines with the holistic approach? 2. Does the narrative in the chart depict the patient as a unique person behind the disease? 3. Are patients seen as active or passive actors in the treatment process?

The results suggest that the main approach in the narratives is biomedical allopathic rather than a holistic one. Only two aspects of patients’ social life are lifted in the narratives: family and work. The lack of information on other levels of the patients’ social lives, as well as to what extent their lives are being restricted prevents a better understanding of the person behind the disease. Although only 33% of the narratives explicitly mentions patients’ active role in their treatment, it is not possible to say whether or not the remaining 67% patients self-engaged in the treatment planning. The doctors switched between three different forms to provide information to the patients: oral, written and oral and written. The variation can be interpreted as an individual adaptation depending on the patient's susceptibility level at the time of the doctor's visit. Thus, this might suggest that the doctors, by adapting their way of informing the patients, tried to make them active in the treatment so they could make informed decisions.

Acknowledgments

I would like to thank my supervisor associate professor dr. Louise Olsson for her warm support and advice. Her positivity and curiosity has helped to maintain focus and broaden my views throughout this work. I also would like to thank dr. Rolf Ahlzén for so kindly reading this paper and giving me valuable pointers.

I am very much thankful to assistant professor dr Lars-Gunnar Gunnarsson for his valuable guidance, keen interest, and encouragement during our seminars.

I wish to express my sincere gratitude to all the personnel at Medicine Clinic at CSK: dr. Bengt Norberg for granting me permission to carry out my study; dr. Anders Gustavsson for showing me around and seeing to that I would get everything I needed to carry out my research; to the nurses Gunilla, Veronika and Margareta for answering my questions and

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promptly helping me with practical things; to Paula Holmedahl for making sure Cosmic worked for me.

Last but not least I would like to thank my very own dr Martin for fixing everything I needed: love, food, and lots of hot tea. Throughout my work he showed me nothing but interest and support and without him this work would not be possible.

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Cover letter

March, 23th 2017. Dear editor,

My name is Fatima da Silva. I am writing to you to submit my manuscript entitled

Deconstructing lives: a discourse analysis of IBD patients’ medical records for consideration

for publication in your journal.

The concept of patient-centered care is widely spread in healthcare. This approach implies a holistic view of individuals and many studies discuss the topic. However, to my knowledge, no research has yet illuminated how the concept is reflected in medical charts.

Narratives of first time visits of patients newly diagnosed with IBD were studied in the present research. The purpose was to investigate how well the holistic view is applied, if the narratives told unveil the individual behind the disease as well as how involved patients are in their treatment.

The results show that dimensions of patients’ life were rather restricted to specific points related to IBD symptoms. The analysis pointed to individually adapted patient education, which was shown in the way information was given: oral, written, and oral and written forms. A more nuanced view of the person behind the disease was not apparent, and the patients’ direct acceptance/refusal of the treatment was not always observable.

The results suggest that the main approach in the narratives of the medical records is

biomedical allopathic rather than a holistic one. The lack of information on various levels of the patients’ social life, as well as to what extent their lives are being restricted prevents a better understanding of the person behind the disease. Although some of the narratives explicitly mentions patients’ active role in their treatment, it is not possible to say whether or not the remaining patients self-engage in their treatment planning.

The present manuscript describes an original work and has not been submitted to any other journal.

Thank you for your consideration.

Sincerely,

Fatima da Silva, Bachelor of Medicine Örebro University.

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Populärvetenskaplig sammanfattning

Inflammatorisk tarmsjukdom (IBD) är en kronisk, invalidiserande, autoimmun sjukdom av okänd orsak och som drabbar miljontals människor över hela världen. Enbart i Sverige finns cirka 50 000 personer som lever med sjukdomen. IBDs invalidiserande natur har en stor negativ inverkan på patienternas liv.

Ett omfattande team inom hälsovården behandlar och hjälper dessa patienter att hantera sin sjukdom. Teamet består av läkare, specialiserade sjuksköterskor, dietister, rådgivare, psykologer och psykiatriker.

Hälsovården i Sverige är patientcentrerad. Detta innebär att man inom vården bör ha en holistisk syn, dvs helhetsyn, på patienterna, hjälpa dem att aktivt delta i behandlingen samt att främja och respektera deras självständighet. Patienten bör ses som en unik individ med olika behov i olika aspekter av livet.

Den första läkarbesöksjournalen anger tonen för andra vårdgivare inom hälsovården angående vidare behandling och hantering av patienter. Denna uppsats hade som mål att utforska hur väl det patientcentrerade konceptet tillämpades i läkarjournaler.

Första läkarbesöksjournaler från patienter som nyligen diagnostiserats med IBD ingick i studien. Sammanlagt 24 journaler studerades. Resultaten visar att det holistiska perspektivet inte är fullt uppnått. Aspekterna av patienternas liv som lyftes fram i journalerna var

begränsade till specifika punkter relaterade till IBD-symtom. En mer nyanserad syn på personen bakom sjukdomen var inte framträdande och patienternas aktivt deltagande i form av acceptans / avböjande av behandlingen observerades inte alltid. Läkarna växlade mellan tre olika former att ge information till patienterna: muntlig, skriftlig samt muntlig och skriftlig. Variationen kan tolkas som en individuell anpassning beroende på patientens

mottaglighetsnivå vid tiden for läkarbesöket.

Denna studie kan bidra som en startpunkt till en diskussion kring holistisk vård och hur den bör utövas i verkligheten, så att man kan hjälpa patienter på ett optimalt sätt.

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Ethics

The project was presented to the Medicine clinic at Central Hospital of Karlstad and accepted. Following the guidelines of the National Patient Overview, the researcher and the head of the clinic signed an assignment agreement that allowed the further conduction of the study. The results of this research will be presented to the clinic’s medical staff and might contribute to a discussion that can lead to an improvement of the quality of the health care provided. This is a qualitative research based on a systematic review of medical journals. Usually, qualitative research, carried out in medicine field, is performed using a larger corpora of material obtained from interviews, recordings of interaction between physicians and patients, or between members of the healthcare staff. In such a study a permission from the Ethical Review Board must be submitted for approval. This measure is taken to guarantee that the rights of all those participants in the study are preserved.

The present study is carried out in a much smaller corpus and is a part of examination process for a Masters degree. It relies on the reading of patients’ journals, which is a violation of integrity, once the researcher was not involved in the patients’ care. However, following the current legislation (D nr: Ö 28-2016), no application to the Ethical Review Board was submitted. The justification lies in that, despite the violation of integrity, these kinds of studies bring no harm upon patients, do not impose a threat to their safety, and do not influence their treatment in any way. The results found are not published in any journal so they do not become public. Such studies can also can be seen as a lead to improvement of the healthcare provided and, therefore, an approval from the Ethical Review Board is not

considered to be necessary.

The method applied does not bring harm to patient’s health or their safety. Patients were not asked for their consent nor were they given information about the study. However, their integrity is respected and kept throughout the process. Only the researcher has had access to the charts used in the study. The journals were de-identified to preserve patient’s

confidentiality rights.

All the physicians had been informed about the study by the head of the clinic, prior to the start of the research, and none disapproved of having his/her journals analyzed. However, their integrity was also taken into consideration; their identities remained concealed, being only revealed to the researcher.

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Deconstructing patients : A discourse analysis of IBD patients’ medical records