Adult persones experience of living with Multiple Sclerosis

Aim: the aim of the study was to describe adult people’s experience of living with Multiple sklerosis

What I need you to help me is:
The study must be qualitative study based on articles.

1. Introduction (HERE YOU MUST PRESENT the DISEASE statistics, how is to live with the disease and what is the problem and explain why. The problem, for example. Ann (2012) shows that people with MS experience that nurse has no insight into how the disease is to live with Ms. Ann (2012) believe that it is important to nurse … … … … … (Only 1 page should be on the introduction with 5 articles), check out the exemplary . All u write must have a refences. I mean that if u find a problem like people with MS experinces that the nurse has not…. U must find it in a article. The article must said that the nurse has not insigt into how is it to live with MS. ( its very important for me that u do like i said.
In the introduction you need to have 5 articles – peer review articles ( database cinahl, medline, pubmed). Articles från 2008- 2015.

2. Background

On the background to the stand: 3 subtitle

1. multiple sclerosis (here can you explain the whole disease, with symptoms, course of disease, treatment)

2. Experience of living with a lifelong illness

3. Nursing implications for people with MS (this also explains the role of the nurse, nursing, etc.) ­

4. Theoretical framework:
you have to chose a theori that you thing is better to my thesis. Ex. Joyce Travelbee, Patricia Benner och Judith Wrubel.
Here u must have references , och artiklar. You can write only 1 Page here and 3 articl, fron cinahl, pubmed.
On the background, it is sufficient that you just write 4-5 pages.

(in the background must be 7 articles) – peer review – articles from 2005-2015 ( database, cinahl, pubmed, medline).

3. Results (in the resultat must have 3 categories and 7 subcategories). Important that you check the exemplary to see how they have done- U can write only 6-7 pages, here-

Rules: The outcome you have to find 8 articles, peer review and qualitative study and have a quality medium, high.
The article should be searched in the database. Cinahl and Pubmed, from 2005-2015). There should be articles with qualitative study all PEER REVIEW.
Articles are made only in the following countries: Sweden, England, Canada, Finland, Norway, Denmark, Australia and New Zealand.
The articles shall be persons who are over 20 years – 55 and both men and women should be included in articles.
Article that are made in the United States should not be involved.
Articles that include pregnant women and anyone under 19 should not be involved.

These articles you will find the need to find sentences units , condensed, coded, category, sub category ( follow the exemplary).
Sentence controllers (ex. The uncertainty and unpredictability of bowel urgency and flare-ups also contributed to social and living space restrictions” (Daniel, 2001).
Condensation –
Code
Category, sub category

The selected sentence units kondenserades which Graneheim och Lundmans.
Graneheim, U-H., & Lundman, B. (2004). Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105-112.

1. Category
a. sub category
b. sub category
2. Category
a. sub category
b. sub category
3. Category
a. sub category
b. sub category
c. sub category

When you have taken out the categories and undergategorier, you start to analyze. Check carefully the exemplary because it is in this way that I have to do it.

Everything you write must be referenced in the current text. (all the time you reference). It is important that you do as the exemplary
8 article that u are going to choose for the resuts and u need othes too. Check the exemplary.
4. Resultsdiscussion

Then discuss that were analyzed. It also reference here. Check the exemplary.

It is enough that you write 5-6 pages

5. Conclusion

At the conclusion, you do not need to reference something. Check the exemplary.

Important:

What I need is that you write in the form of a table– check the exemplary.

Article overview: author/year/land-title-method-selection-quality

Sentence units : Sentence units -condensation-Code-category-subcategory.

You should also show how you searched the articles och show it in the table form.

Check the exemplary. It is a requirement in my school that we have to show the way how we found the article

Searches of CINAHL

Searches of pubmed

Searches Keyword combinations Number of hits Search date Readabstract

The number of selected items

The reference list must also BE PRESENT in my thesis.

The exemplary:
Adult people’s experiences of living with inflammatory bowel disease

Summary
Background: a lifelong disease that debuts relatively early in life are inflammatory bowel disease. With the disease following symptoms as blind makes itself felt and then affect people’s daily lives. People experiencing symptoms often control their lives which can cause a loss of access to life. Because of the disease’s impact, people need to make major changes in their daily lives, and they feel that their welfare is affected and that their world is limited. People also experience a need for aid from the nurse in order to manage their daily lives. Knowledge about the experience of living with inflammatory bowel disease is thus of importance for the nurse as it is an important part of being able to respond to the person and give a person-centred care. Purpose: describe the adult people’s experiences of living with inflammatory bowel disease. Method: A literature review in qualitative approach based on eight articles and analysed by Graneheim and Lundmans (2004) description. Results: the results revealed three categories: A limited life world, an emotional impact and change lives. The results show that living with inflammatory bowel disease imposes restrictions in everyday life and changes in the life of good and evil. People can experience difficulty in talking about their disease and its consequences, then it is considered shameful which can affect their welfare. They are also of a lack of understanding from the public who can contribute to a limited life-world. Thus persons experiencing a great need for support and person-centred care from the nurse in order to manage their daily lives and the different emotions that impact the disease causes. Conclusion: People experiencing a loss of control of their lives by the restrictions and may experience social isolation. The nurse is therefore an important role when people feel that they can be better dealt with in everyday life through support and person-centred care. Thus highlights the importance of this study because knowledge of how people experience their everyday lives and life-world needed to be able to give the personcentrerade care. Also on qualitative research in the field is necessary when the current and existing research is limited and that the disease’s incidence constantly increasing.
Keywords: inflammatory bowel disease, life-long disease, life-world, nurse, experience.

Table of contents
Introduction
Background
Experience of a lifetime of disease
Inflammatory bowel disease
Nursing implications for people with inflammatory bowel disease
Order
Method
Data collection and Selection
Quality review
Data analysis
Results
A limited life world
An emotional impact
A change in daily life
Discussion
Method discussion
Results discussion
Conclusion
Independence
References
Appendix 1 database searches
Annex II assessment report
Annex 3 Article overview
Appendix 4 content analysis

Introduction
Inflammatory bowel disease (IBD) is a collective term for diseases under Whayman, Duncan and O due connor (2011) is characterized by chronic inflammation of the gastrointestinal tract. The literature review includes the two most common of these diseases namely ulcerative colitis (UK) and Crohn’s disease (CD) because they under Whayman et al. (2011) manifests itself resembled by symptoms and course of the disease. Pearson (2004) argues that IBD means a lifelong process for dealing with the consequences that affect the everyday life of mental, physical and social pressures. It is estimated that 40-45 000 Swedes live with IBD and fall ill every year about 2,000 people according to the SBU’s compilation of previous research (2010). SBU (2010) has also come to the conclusion that both women and men are carrying the disease and most of the contract between the ages of 18-30 years. According to Dahlberg, Segesten and Nystrom (2003) entails a lifelong disease changes in the body that allows humans access to the body in the way it wants to. Do not have human access to the body think Merleau-Ponty (1999) based on his concept “the lived body” that man then nor have any access to the life and person’s world is therefore limited.

According to Pearson (2004) needs people living with IBD specialist care but according to a study by Cooper, Collier and James (2010) care for nurses without specialist training these people as well. Cooper et al. (2010) mean that non-specialist trained nurses in this area often lack knowledge of the consequences of diseases, which can lead to people living with IBD is deprived of care they are in need of. Cooper et al. (2010) would also be cared in good condition based on people’s experiences and support in decisions about disease from nurses is important for these people. In a study of Thorsteinsson (2002) it was found that without the knowledge of individuals ‘ needs and experiences of the disease, it is impossible for the nurse to provide good care. Limited comprehensive facts on this subject, it has also been shown to exist and by describing adult people’s experiences of living with IBD is assumed to increase understanding of the impact of the disease. The nurse will then get the option to provide nursing care of good quality and create more favourable conditions in the daily life of the people
Background
Experience of a lifetime of disease
Life with a lifelong illness and a constant physical body implies existential pain and takes a lot of force directly affecting people’s experience of well-being according to Öhman, S and Lundman (2003). According to Lundman and J (2007) experiencing people living with a lifelong illness life as uncertain because of not knowing how the disease will affect themselves, their families, work or social gemensamheter. Lundman and J (2007) argues that there is an uncertainty about the future that provides experiences of physical suffering, loss and grief. A lifelong disease mean Lundman and J (2007) also disturbs life by persons may have to make significant lifestyle changes. A lifelong disorder that according to Whayman et al. (2011) is becoming more common is inflammatory bowel disease. Inflammatory bowel disease IBD what distinguishes from other lifelong diseases is under Whayman et al. (2011), among other things, that it is intermittent then the intestinal mucosa during periods of deterioration becomes inflamed and damaged. According to Ebenezer and Ebenezer (2012) usually attacks occur unpredictably and in between are the people often asymptomatic periods (remission) of different length. Ebenezer and Ebenezer (2012) continues to describe common symptoms during flare-ups are abdominal pain, frequent and/or bloody diarrhea, fever and weight loss. Casati and Tones (2000) writes that the well-being of people living with IBD is influenced by the unpredictable symptoms that also provides control loss of life. People experiencing thus according to Casati and Tones (2000) that the disease rule their lives rather than themselves, which can affect their health and create uncertainty in everyday life. According to Ebenezer and Ebenezer (2012) is distinguished also by IBD risk of other serious diseases, eg. cancer, as a result of IBD. Ebenezer and Ebenezer (2012) believe that people living with IBD experience fear of developing these complications or other complications such as. a stoma. According to Schoultz (2012), it is common to the disease debut at an early age when people often genomgårlivs-changing decisions that relate to, among other things, education, career or family. Bhatti, Salek and Finley (2011) believe that a lifelong disease IBD imposes restrictions that may affect those life-changing decisions. Casati and Tones (2000) argues that the psychosocial problems and emotions IBD should attention in nursing care where it makes a difference to sustain or potentially increase the person’s well-being.
Nursing implications for people with inflammatory bowel disease
According to health and medical services Act (SFS 1982: 763) should care as far as possible, be drawn up in consultation with the patient and according to the Kasén (2012) have the nurse as the main task of nursing which S (2012) considers mainly involves promoting health for the person and create more favourable conditions in everyday life. The concept of health covers according to S (2012) the person’s experiences of life and thus make up the experiences in nursing care. Pelletier and Stichler (2014) believe that experiences also influence the design of care and also sets the stage for a person-centred care. In the personcentrerade care mean Pelletier and Stichler (2014) that the person be integrated into their own care through their experiences and that the person is seen as the key decision maker of the care that should be taken. The nurse who according to Fow and Grossman (2006) has a prolonged direct contact with the patient is considered to have responsibility for developing a person-centred care. It is therefore of importance according to Pelletier and Stichler (2014) that nurses have the knowledge of people’s experiences of their illness and the life-world to be able to provide professional nursing. According to Pearson (2004) must the nurses that works with people living with IBD clearly understand the experience of the problems the person face in their everyday lives in the fight against the disease, both the physical symptoms as well as the psychological and social impact in order to give a person-centred nursing care based on a holistic approach. In a study of Thorsteinsson (2002) it was found that professional nursing care was the most important part in the care of people living with life long illnesses. The study was noted also for people living with life-long diseases are care of good quality is crucial because they might be forced to seek care more often than others and is it lack of care quality, effects become troublesome. The nurse is considered thus according to Todorovic (2012) to be important because people living with IBD can be helped to find strategies, learn about the disease and support for the achievement of well-being. Mean Todorovic (2012) to the nurse helps them to accept the consequences and manage their everyday lives.
Theoretical frame of reference
The present study was elected life world theory as a reference framework that emphasizes people’s experiences and experiences according to Dahlberg, Segesten and Nystrom (2003). On the basis of the life world theory was chosen a specialising with Merleau-Pontysbegrepp “the lived body” that might explain how a lifelong disease affects life. Merleau-Ponty (1999) sees the body as an inseparable unity of body and mind and also as the essence of human existence. The term mean Merleau-Ponty (1999) that unless people have access to the body, man has no access to life. Merleau-Ponty (1999) sees the world as a human life lived world and man can influence the design of the life-world through deeds and experiences. Dahlberg et al. (2003) explains that it is also in the natural world, we are looking for content and meaning of life and to the life world perspective, among other things, to see, understand and analyze the world in order to be able to understand some of it. Dahlberg et al. (2003) argue that this is an important part of the Foundation of nursing care. Dahlberg et al. (2003) also believe that if man would experience suffering, for example. a life long disease, man becomes aware of the body in a new way. Merleau-Ponty (1999) argues that if any change occurs in the subjective body also takes place a change of access to life. He believes that at the same time there is a change of access to the lived world and these changes are for better or worse. Merleau-Ponty (1999) argues that these changes also becomes apparent between persons who are in relationships and it is essential to pay attention to the changes because they could affect the relationship. Person’s life-world is thus important to know according to Dahlberg et al. (2003) because it’s the one can gain an understanding of the person’s lived experience world and be able to provide good care.
Aim :
The aim of the study was to describe the adult people’s experiences of living with inflammatory bowel disease.
Method
The method that was used for the literature review were of qualitative design then its purpose is to be able to describe people’s experiences of a phenomenon in their life-world to reach understanding (o. & S, 2011; Wade, s & Bahtsevani, 2011). A literature review, in Polit, Beck (2008) a compilation of already made research of a topic.
Data collection and Selection
According to Willman et al. (2011) should be both systematic literature searches in different databases and supplemented with manual searches of relevant studies. In the present studie swas performed with data collection of articles on PubMed and Cinahl databases (see annex 1). PubMed is according to Willman et al. (2011) by broad references to journals in nursing and medicine, Cinahl (Cumulative Index to Nursing and Allied Health Literature) includes mainly nursing research. Willman et al. (2011) mean that the databases have thesaurus that can be considered encyclopedias by subject headings. Chinal using Cinahl Headings and PubMed using MeSH terms (Medical Subject Headings). Willman et al. (2011) continues to subject headings are used to create a relevant search in the area in question. Willman et al. (2011) also believe that each database may have different terms of equivalent words in the thesaurus topics because they are different structured and thus was chosen different subject headings in your searches. Willman et al. (2011) believes that a search is not sufficient if it is carried out with a search term as well as to subject and free text word should be used together. Keywords used for literature search is: IBD, Inflammatory bowel disease, Ulcerative colitis, Crohn’s disease, experience, experience, life changed as events, attitude, life experience and patient’s attitude. Willman et al. (2011) continue att sök termerna separate or reconcile Smith using the Boolean search operators to get a distinct and specific search on the topic. In this study were used the Boolean search operators OR and AND then Willmanet al. (2011) think OR increases the sensitivity AND delimiting the area. Quotation marks were used in the searches then, according to Willman et al. (2011) prevents inversion of the compound free text the words.
Inklusionskriterierna for the study was that the articles should be written in English, peerreviewed, from the twenty-first century, to include people who have been diagnosed with inflammatory bowel disease and age over 18 years. The study excluded articles that included pregnant women and those with other or more diseases than UK and CD. Search in databases with inklusionskriterierna gave the 719 articles. The selection of these articles started by reading titles corresponding to the purpose which the 63 articles did. The abstracts were read in these 63 articles and finally was elected 13 articles where even the abstracts, the study’s purpose. The searches were carried out at two different databases and two articles appeared in both searches, thus was the two duplicates removed. In addition to the searches in databases and with free text word was also manual searches from the current reference list which resulted in two articles. A total of 13 items were selected for quality review.
Quality review
The 13 selected items kvalitetsgranskades from the assessment protocol (see annex II) which is intended for the qualitative studier with method according to Willman et al. (2011). In Protocol, see questions that assessed the quality of all articles. Each question could be answered by Yes, no or don’t know “and gave each one, zero-and-a-half points. Each item’s points were counted together and then was converted to a percentage based on the total score. According to Willman et al. (2011) brings out a percentage of the score the item’s quality better than just scoring. According to Willman et al. (2011) be considered items between 80-100%, as being of high quality, 70-80% mean quality and 0-70% of low quality. In the study were selected only articles with the percentages 70100% because Forsberg and W (2008) believe that studies of low quality should not be used in literary studies as obscure parts of them can give a worse result. It finally became the eight articles that were included in the analysis of content (see annex 3).
Data analysis
The eight articles were analysed on the basis of elements He manifest latent and Lundmans (2004) description of qualitative content analysis. A manifest content analysis were used according to Forsberg and W (2008) for the systematic analysis of scientific documents on a text near the level to be able to identifieraolika patterns and phenomena from the material. Graneheim and Lundman (2004) continues to content analysis involves several steps. First read the results part thoroughly then it according to Graneheim and Lundman (2004) gives an overall picture to be able to take out the sentence controllers which means words, sentences or paragraphs in context and content have a common message against the study’s purpose (see annex 4). Sentence units were taken out and were translated into Swedish by the authors individually and then collectively be able to compare and discuss their content based on purpose. Sentence units kondenserades that according to Graneheim and Lundman (2004) involves a process where the text be shortened but still where the Central meaning is preserved. Graneheim and Lundman (2004) suggests that a clearer picture is created by the condensing units through codes. Graneheim and Lundman (2004) continues to a code is formed by one or a few coherent words from the condensation that describe the essence of the difference of the device. Graneheim and Lundman (2004) argues that the codes are creating better conditions for grouping together sentence controllers with similar meaning which is the basis for categorization. According to Graneheim and Lundman (2004) gives subcategories in a stronger position to respond to the study’s purpose in that they bind together the underlying message and creates a thread in the categories. After these steps it emerged ten categories through further discussion and analysis finally was restructured into three categories with a total of seven subcategories.
Results
After content analysis revealed three categories: A limited life world, an emotional impact and changes in everyday life (see table 1). These three categories and related subcategories reflecting people’s experiences of living with IBD.
The first category is “A limited life world” emerged on the basis that it is in the life-world of people seeking understanding of the meaning of life. People living with IBD experience that disease restrictions in social contexts and relationships especially affect them, that they may not be equally involved socially as before and that is likely to have serious problems. It can cause a lack of understanding of the disease and their situation which might give the impression that life no longer has the same meaning and lead to a decline in well-being. The second category is “an emotional impact” was created by IBD contributes to a variety of mixed emotions as well as to persons often experience lack of understanding from the public that could cause that they do not want or dare tell you about his illness. The last category of “changing lives” is that IBD also causes changes in their everyday lives. Everyday life can be seen as what people are doing to maintain balance and order in life by way of life. The category also reflects what they are experiencing themselves need to do to preserve this order which is that they mainly need to adapt to it, accept and take control of it. It has been shown to cause a large proportion of persons experiencing positive lifestyle changes as a result.

Table 1. Compilation of categories and subcategories.
Categories Subcategories
A limited life world • Social context affected
• Relationship concerned
An emotional impact • Mixed emotions
• Not daring to tell
A change in daily life • Adaptation and acceptance
• Loss of control of one’s life
• Lifestyle changes

A limited life world
Social context affected
People living with IBD experience the disease berörderas social life when the disease’s impact is felt limiting freedom and thereby their life-world (Hall et al., 2005). People living with IBD experience a sense of being fängsladepå because of the disease’s unpredictability, which makes them bad at planning ahead (Sarlo et al., 2008; Daniel, 2002). The restrictions have different meanings, some are positive but for other obstacles that cannot be overcome (P-Lesnovska et al., 2008). For most of these, however, leads to a limited social life and a decline in well-being, among other things, due to lack of energy and concern for the future (P-Lesnovska et al., 2008). Constraints can also contribute to an avoidance behavior by a need to constantly be near a toilet because incontinence problems which this disease causes may cause the loss of bowel control in social environments (Hall et al., 2005; Daniel, 2002; Waljee, 2009). Incontinence problems can in itself provide feelings of fear, humiliation and embarrassment which contributes to social isolation (Hall et al., 2005; Daniel, 2002; P-Lesnovska et al., 2008).
“If I did not have this disease, I would be out camping and traveling and going out a lotif I didn’t always have to worry about being near a bathroom and stuff like that” (Daniel, 2002, p. 87).
People also experienced social limitation through pain and livsmedelsrestriktioner (P-Lesnovska et al., 2008; Daniel, 2002). Food is associated medsociala activities and some relate food with pain that makes them avoid dinners, parties and social events (P-Lesnovska et al., 2008; Sarlo et al., 2008).
“More and more I have stopped going out and you get really socially backwards because the whole process of just going out is a challenge … because every time you go out you have to think,” How sick am I going to be, what kind of food is going to be there … what can I eat, what can’t I eat… ” (Daniel, 2002, p. 86).
The ability to not be able to participate in social activities because of the hassle, compromises and sacrifices that this disease causes can cause depression and low mood and a sense of failure when they can’t perform the same activities as other (Hall et al., 2005; Sarlo et al., 2008; P-Lesnovska et al., 2008). Persons experiencing increased social cohesion and less restrictions if they can perform the same activities without hassles and compromises (Hall et al., 2005).
“I think having a normal life is really being ableto do what you want to do without having to make to many compromises…” (Hall et al., 2005, p. 446).
Relationship concerned
People feel that IBD affects their relationships including people feel guilty and alone because the disease often consume all the energy and time which means a limited life world (Sarlo et al., 2008). It can orsaka utan förskap from partners and family when people can’t be bothered to take part in joint activities (Daniel, 2002). Confirmation by other people is very important for people living with IBD, but despite the value of confirmation, it may at the same time develop the feeling that they are a burden that can limit the relationship (P-Lesnovska et al., 2008). In love relationships, experiencing some of the partner is the major support and in many cases, IBD strengthen relationship (Frohlich, 2014). However, experiencing the most to IBD restricts the relationship and sometimes causes serious problems in the relationship (Frohlich, 2014). People are worried that their partner should find that their symptoms are abhorrent and they don’t accept them (Frohlich, 2014). The relationship can be stressful even if the partner has been supportive (Daniel, 132002). Because of this stress about not being accepted are trying people also see strong out even if they are not doing well to become more socially accepted (Hall et al., 2005).
“You want friends and family to know that it is going to be okay even though it is not, to everyone else it is going to be fine but to you it’s not” (Hall et al., 2005, p. 452).
An emotional impact
Mixed emotions
People living with IBD experience an emotional impact by the mixed feelings that arise largely because the disease is incurable. Because IBD is a lifelong disease causes the fear and emotions like anger, guilt, depression and mood swings (Sarlo et al., 2008; Daniel, 2002).
“What concerns me is that it’s a chronic and incurable disease” (PhilLesnovska et al., 2010, p. 41).
IBD brings fear of the future because of heredity, and younger adults are often afraid of not being able to follow through on their plans to start a family (P-Lesnovska et al., 2008; Sarlo et al., 2008). Younger adults are also devastating to the physical changes this disease causes may affect their appearance during the time when it is important (Daniel, 2002). They can then see that their bodies are not sufficiently attractive, resulting in low self-esteem (Sarlo et al., 2008). People living with IBD looks to be under attack by an uncomfortable, smelly, painful and embarrassing disease which is making it difficult to live with (Hall et al., 2005; Daniel, 2002). The uppleversjukdomen also as a constant and exhausting struggle that gives the feeling of being lowered, creating upset attitudes (Hall et al., 2005; Czuber-Dochan et al., 2013). They experience life as uncertain as the disease unpredictable flares up and then give in (Daniel, 2002).
“Life changes, you are never the same again, you get scared of everything you do, it is a very depressing disease” (Sarlo et al., 2008, p. 632).
People living with IBD may find it difficult to relax and feel safe even in remission (P-Lesnovska et al., 2008). In addition, people often feel lonely and think they must face the problems themselves because of their family and nurses do not always understand their situation resulting in feelings like anger and frustration (Sarlo et al., 2008; Daniel, 2002).
“Well it’s just something I have to live with. Bowel disease, the subject’s, not right for conversation “(Hall et al., 2005, p. 451).
Not daring to tell
People living with IBD experience that they don’t dare to tell if the disease is due to fear of being condemned when it is considered shameful to talk about bowel problems (Hall et al., 2005; Daniel, 2002; Lesnovska et al., 2013) It is also difficult to talk about the disease because of a lack of understanding among the general public who doubt that the disease is so serious that it is because it is not always visible from outside (Daniel, 2002; P-Lesnovska et al., 2008).
“My sister says I’m blowing this up … it’s an act of … I’m trying to get attention “(Daniel, 2002, p. 87).
They also avoided to talk about IBD in social contexts because they want to prove themselves strong (Daniel, 2002). Because of the stress caused among other things in the workplace when they experience to employers and colleagues have a poor understanding of the disease and its impact (CzuberDochan et al., 2013; Daniel, 2002). To deal with the stress they feel a need to get personcentreradomvårdnad from the nurse to discuss its consequences (Daniel, 2002; P-Lesnovska et al., 2008). These are important because they often feel that enbörda could discuss the disease with family and friends because of their lack of comprehension (P-Lesnovska et al., 2008; Hall et al., 2005).
”… I wish sometimes that people didn’t even know I had it, so that it didn’t just become such an issue with people “(Hall et al., 2005, p. 452).
A change in daily life
Adaptation and acceptance
People living with IBD experience a changed life because they need to adapt to the disease and thereby experienced a normal life differently in comparison with healthy people’s lives (Hall et al., 2005). The challenges that come as a result of IBD is changing also their daily lives in a different way and they feel that it is important to accept the disease to know manageability in life (Czuber-Dochan et al., 2013; Daniel, 2002; P-Lesnovska et al., 2008). Adaptation and acceptance comes primarily through experience but the disease’s unpredictability is creating problems with this (Hall et al., 2005). Therefore, it is important to show a determination to learn to live with the fight that IBD, and the condition becomes so normal for them even if their life based on can be seen as “abnormal” (Hall et al., 2005; Sarlo et al., 2008).
“So I have to rejig my life kind of around my illness and. .. I do things in my way around my illness and in a way my normal to me but totally abnormal to you “(Hall et al., 2005).
Loss of control of one’s life
People living with IBD often experience loss of control of one’s life as a change in everyday life due to the disease. Control loss affect people both physically and mentally (Hall et al., 2005). A common psychological influence is that anxiety arises as a result of the feeling that the symptoms will check their life instead of theirs which affects well-being (Waljee et al., 2009). The disease also causes loss of control due to the uncertainty of the extent of the disease and its treatment, restriction of activities but also by fear of death, existential threats and heredity (P-Lesnovska et al., 2008). While the future is uncertain because of uncertainty whether they will be able to control the disease ellerinte (Daniel, 2002). When people living with IBD experience an inability to control their disease through the unpredictable symptoms creates a sense of powerlessness (P-Lesnovska et al., 2008; Daniel, 2002).
“It’s just bit by bit by bit you lose it. .. one day you wake up and you realize you can’t control anything… I can’t control when I go out because I never know how I’m going to feel the … I can’t plan anything more than a couple of hours in advance … and I really have no control over my reactions or anything “(Daniel, 2002, p. 89).
People feel that knowledge of what can check or aggravate the disease in question is important when they feel that knowledge makes it possible to avoid situations that contribute to more consequences of the disease (Lesnovska et al., 2013). Medication and diet are viewed as the 16 most important ways to take control through (Hall et al., 2008). They feel the need to take control to not allow themselves to be overcome by the disease to be able to continue to be productive, live a normal life ochbevara well-being (Hall et al., 2005; Daniel, 2002).
“I have pretty much got it under control, I go to places where I know I am going to be safe where I am going to be alright…” (Hall et al., 2005, p. 452).
Lifestyle changes
People who are experiencing the disease levermed IBD contributes to many lifestyle changes that provide a changed life (Sarlo et al., 2008). These lifestyle changes will affect the way they act and think, especially in relation to food (Sarlo et al., 2008). Some of the changes are positive then they feel that they are better people because they feel happier, less stressed and more courageous to fight against problems (Sarlo et al., 2008). Most feel that they appreciate their life and their friends more and live mer hälsosamt then many start to develop healthier dietary and exercise habits (Sarlo et al., 2008). Many experience a more positive vision of the future by lifestyle changes and the prevention of complications increases their care of themselves (Sarlo et al., 2008).
“I started to enjoy life in a healthier way. Actually, the disease was good, I started to take care of myself, and it makes me happy… The diet has changed a little, but it changed to a better diet, because now I eat healthier things and it isgood for everyone, having a disease or not “(Sarlo et al., 2008, p. 633).
Discussion
Method discussion
Metoth discussion Of the literature review was a qualitative design that according to Olsson & S (2011) is used to determine people’s experiences about a phenomena in föreliggandestudie’s experiences. Thus excluded quantitative design that O’brien and Mrs Sörensen (2011) are used when the material is numbers. An empirical study was an option because according to Forsbeg & W (2008) can be more connected to reality. However, Polit & Beck (2008) to an empirical study is very time consuming and mean that a literature review can provide a better overview of the current topic. In addition, mean Forsbeg & W (2008) with an empirical study involving interviews follow an ethical consideration for the interviewed person because the person in the context of the interview can be harmed or get any yet.
Database searches are the basis of the literature review and needs according to Forsberg and Wade (2008) be carried out properly. Polit ochBeck (2008) recommend to consult a librarian in charge which was made at Blekinge Institute of technology to bring current search methods and help to formulate relevant keywords. Polit, Beck (2008) argues that it provides better conditions for a good data collection. According to Willman et al. (2011) used Boolean search operators in order to combine keywords for a relevant database search. The Boolean search operators used was AND AND OR. The Boolean search operator NOT selected not to be used because Willman et al. (2011) mean that it should be used with caution because it extensively refine your query. In addition, because of the limited literature search mean Willman et al. (2011) to search operator NOT can lead to relevant articles is omitted. However, think Wade et al. (2011) to researchers using the Word can specify more and save time. Searches in PubMed and Cinahl were divided between its authors due to work on sorting and exclusion are time consuming, according to Willman et al. (2011). Although there was a constant communication between the authors, the Division made to relevant articles in the study were missed.
Before the data collection were chosen exclusion-and inklusionsskriterier since wallengren & Haase (2012) mean that it increases the innehålls validiteten and confirmation the marketability of the work. Thus excluded studies where individuals were pregnant or had more or other illnesses in addition to IBD. Peer review was chosen as inklusionskriterie eftersom Olsson and Sörensen (2011) mean that such articles are of good scientific basis. In PubMed are articles reviewed and therefore does not need peer review be elected as, on the other hand, needed in Cinahl. The study’s purpose is directed at adults, according to UNICEF (2009) do not count people as children at 18 years and older, and therefore was set 18 years as the age limit. Delimitation of the year was made when the focus should be on current research as according to Forsberg and Wade (2008) is a perishable commodity. The first performed this search gave limited published research and according to Lundman and H-He (2012) period can be stretched to include more articles, and thereby sunk the demarcation of the year from the year 2005 to the year 2000. The reduction provided more data tillstudien. The items that were left after the quality review and that the results were based on 18 then represented countries Sweden, United States, Canada, Brazil and the United Kingdom. This variety of countries can be seen as a relatively broad fact-finding as Willman et al. (2011) still consider to be sufficient to produce a credible result. The limited search can also be interpreted to mean that there is a lack of recent studies indicating that more research in this area is needed.
Examination of the articles was to some extent single and split due to streamlining although wallengren and Haase (2012) believes that this should be made jointly in order to strengthen the credibility of the study. However, the authors nonetheless a constant communication which meant that even if the audit was carried out in different locations was made it yet for the most part together which lends credibility to the result under wallengren and Habib (2012). The assessment report that was used, according to Willman et al. (2011) be adapted to each current scrutiny. A modification of the study’s assessment report could lead to more articles included in the analysis and have been able to contribute to the outcome of the study has been different.
A qualitative content analysis was made on the basis of He and Lundmans description because Danielsson (2012) declare that they have put together and made a simple overview of how analysis the process goes to. Manifest content analysis was elected according to Graneheim and Lundman (2004) is textnära. However, according to Graneheim and Lundman (2004) always occurs some interpretation in the analysis because it can be done both consciously and unconsciously, which means that the deferred element cannot have gone to avoid. Forsbeg and Wengstöm (2013) mean that the interpretation is done on the basis of which the person has an understanding of the text. For understanding mean F and W (2008) what knowledge about the phenomenon the authors before the study is carried out. The authors had to present study call for understanding and took a position on this because Forsberg and Wade (2008) argues that the results might otherwise be affected. In order to increase the credibility of the authors took the first sentence in the articles individually and then collectively discussed their compliance against the present study’s purpose since according to Willman et al. (2011) provides a better analysis results. Because articles were written in English were translated into Swedish as Polit & Beck (2008) argues that it gives authors the opportunity to better understand the meaning. The result can be affected in connection with translation if it is not done correctly. To avoid this, use a u.s. English Dictionary to certain words; It was avoided also by disagreement between the units first translated individually and then collectively be reviewed and adjusted. 19
Resultatdiscussion
Results discussion of findings reveals that people living with IBD experience restrictions in everyday life due to the unpredictable symptoms that this disease causes. The result also shows that unpredictability can cause to people unable to participate in social activities, which can result in social isolation as evidenced by Casati and Tones (2000). Social isolation mean Schoultz (2012) mainly comes of symptom unpredictability. Lundman and J (2006) suggests that people also value the social interaction and they want meaningful activities to counter the risk of isolation. The results show that relationships are an important support for people living with IBD who also supported avMerleau-Ponty (1999). Merleau-Ponty (1999) argues that the relationship affected when someone is undergoing changes due to a lifelong disease and the changes should be noted to avoid greater influence. According to Merleau-Ponty (1999) a good relationship can facilitate to provide support because the person in the relationship will get better opportunities to understand life world that Dahlberg et al. (2003) argue is an important part of the Foundation of nursing.
The results show that people living with IBD experience fears that the disease is incurable but also uncertainty and anxiety for the future when they see disease as a lifelong struggle to gain control over. According to Lundman and J (2006), it may help to persons experiencing uncertainty in everyday life is not working as before. This could also be seen as a contributing cause of flare-ups because Schoultz (2012) suggests that psychological factors have a large impact on recidivism. The results show that people living with IBD experience a konstantotrygghet because relapses occur unprepared. The result is corroborated by a study of Jordan (2010) as menaratt social isolation gives more time for people to think and worry about the disease which can give more sense of insecurity and diminished well-being. It is found in the result that they are experiencing difficulties around to talk about IBD as the disease under Lundman and J (2006) is regarded as shameful by people around.
The results show that people find it difficult to plan ahead because of IBD. Lundman and J (2006) argues, however, that even if people thought it was stressful and difficult to plan for the future they had different objectives and plans. Lundman and J (2006) continues to people living with a lifelong illness need to plan to create and maintain order in their lives. The result also shows that stress caused by IBD creates a great need for people to get person-centred care and support of the nurse. This is evidenced by Cooper et al. (2010) who writes that people living with IBD leaves many important decisions to the nurse which could facilitate their living situation. However, mean Cooper et al. (2010) there is a lack of knowledge of IBD among nurses who can help people lose the care they need. According to health and medical services Act (SFS 1982: 763) to all people get the care they need, and that health care should be made with a good quality. According to a study by Davis-Boykins (2014) provides person-centred care a central part for it to be maintained. Davis-Boykins (2014) mean to give a person-centred care, it is essential to find out the person’s care needs. Even Thorsteinsson (2002) highlights the importance of knowledge of the need for care because it also provides increased möjlighetför the nurse to provide nursing care of high quality. Even Merleau-Ponty (1999) proving the importance of person-centred cared because he assumes the life world perspective which among other things means to see, understand and analyserapersonens life-world in order to understand some of which Davis-Boykins (2014) also mean that person-centred care be designed from. According to Pelletier and Stichler (2014) provides knowledge about the person’s experiences to a person-centred care also provides the tools to formulate nursing care in consultation with the person properly according to health and medical services Act (SFS 1982: 763).
The result is that the person must accept the IBD and see it as a normal part of everyday life to experience the manageability. Lundman and J (2006) argues that the inability to handle, among other things, the activities of daily life, gives the feeling of loss of life as Merleau-Ponty (1999) mean. The results show that people living with IBD often experience symptoms of the disease to control their life instead of theirs which Casati and Tones (2000) also shows. It is found in the result set to control the loss of life often affects the well-being and that people feel the need to take control not to be overcome by the disease which Cooper et al. (2010) can detect. Öhman et al. (2003) suggests that the feeling that exist in their illness also raises the need to act in a way that limits the impact of life. Öhman et al. (2003) also mean that attempts to maintain self-control, take decisions and be responsible for the day to day life is essential in order to make life sense. Cooper et al. (2010) stating that acceptance of IBD helps to not let the disease overcome them and it is done by a determination to adapt and thus becomes the IBD is a normal part of life. This can be seen as the ability of control increases which is of significance when Merleau-Ponty (1999) argue that control is crucial for life because if the persons experiencing loss of control is to limit access to life. The nurse can thus be seen as a help in Fow and Grossman (2006) for the individuals to regain control of their lives through good nursing care.
The result also shows that IBD causes major changes in lifestyle and ways of acting and thinking in everyday life. Lundman and J (2006) explain the steering wheel it is possible to live a good life with a chronic disease under certain circumstances and the results show that many people living with IBD is experiencing an increase in own care with a more healthy lifestyle. Stansfield (2014) strengthens the importance of increasing private disposal but declares, however, that it is a very big challenge. Wolfie and Serois (2008) demonstrate these lifestyle changes and describes that the majority of people living with IBD challenges mostly arise then find they can no longer perform the same daily activities due to the disease. The result shows that IBD, therefore, means not only a deterioration without the changed situation brings with it a new way of looking at the world. It can be explained by Merleau-Ponty (1999) which mean that if a person experiences a suffering as a lifelong disease, man to see his body in a new way. He argues that it is changing the access to world leading to changes in the life of good and evil.
Conclusion
The results have shown that IBD is a lifelong disease that causes unpredictable experiences of control loss of life by its limitations that arise in everyday life. It can lead to an avoidance behavior that leads to social isolation. People living with IBD must accept it as a part of their lives to feel the manageability and therefore they feel a great need to have the nurse support. The nurse is also of great importance when people feel that they get help to cope with their everyday lives, which highlights the importance of having done this literature study and attention to the subject. The study may also contribute to increased knowledge about IBD for the nurses because they need knowledge about people’s experiences of their illness to be able to give a good and person-centred care. A limited number of studies in the field, it has proven to be even though the incidence of the disease in the world is constantly growing. This emphasises the importance of more qualitative research on people’s experiences of living with IBD is required to create more favourable conditions for the nurse to design care to their advantage.

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Appendix 1 database searches
Searches in PUBMED

Searches
Keyword combinations
Number of hits
Search date
Read abstract

Number of selected items
S1 “Inflammatory bowel disease” [MeSH 60159 20141023
S2 “Ulcerative Colitis” [MeSH] 27423
S3 “Crohn’s Disease” [MeSH] 30417
S4 IBD 13413
S5 S1 OR S2 OR S3 OR S4 64532
S6 “life changed” events “[MeSH] 19243
S7 Attitude “[MeSH 266400
S8 Experience 454432
S9 “life experience” 1081
S10 “as experience 1751
S11 S6 OR S7 OR S8 OR S9 OR S10 712010
S12 S5 AND S1 1959
S13 S12 AND Journal AND English AND Adult: 19 + year AND Year: 20002014 646 53 7

Searches of CINAHL

Searches
Keyword combinations
Number of hits
Search date
Read abstract

The number of selected items
S1 “Inflammatory bowel disease” [MeSH 2880 20141023
S2 “Ulcerative Colitis” [MeSH] 2414
S3 “Crohn’s Disease” [MeSH] 3564
S4 S1 OR S2 OR S3 7323
S5 “life changed” events “[MeSH] the intensity
S6 Attitude “[MeSH] 10713
S7 Patient’s Attitude [MeSH] 25279
S8 Experience 113596
S9 “life experience” 12424
S10 S5 OR S6 OR S7 OR S8 OR S9 157886
S11 S4 AND S10 256
S12 S11ANDEnglish AND Research ArticleAND Peer Reviewed AND All adults AND Year: 2000201 73 10 6

Annex II assessment report
Protocol for kvalitetsbedömningav studies using qualitative method utifrånWillman et al. (2011).
Description of the study:
Clear demarcation/issue? Yes/No/don’t know
Patientkarakteristika:
Number of
Age
Man/woman
Is the context presented? Yes/No/don’t know
Ethical reasoning? Yes/No/don’t know
Selection
Relevant? Yes/No/don’t know
Strategically? Yes/No/don’t know
Method for
Selection procedures clearly described? Yes/No/don’t know
Data collection clearly described? Yes/No/don’t know
Analysis clearly described? Yes/No/don’t know
Validation
The result is logical, understandable? Yes/No/don’t know
Is datamättnad? Yes/No/don’t know
Is analysmättnad? Yes/No/don’t know
Kommunicerbarhet
Are the results clearly? Yes/No/don’t know
The results are reported in relation to a theoretical frame of reference? Yes/No/don’t know
Generated theory? Yes/No/don’t know
Main findings:
Which/-n phenomenon/experience/opinion described? Is description/analysis adequate? ………………..
Summary assessment of quality:
Good/Average/Bad
Kommentar:…………………………………………………………………………………………………………………
Reviewers sign:

Annex 3 Article overview
Author/year/country Title Method Selection Quality
Czuber-Dochan, w., Dibley, LB, Terry, h., Ream, e., & Norton, c. 2013, United Kingdom The experienceof fatigue in people with inflammatory bowel disease: an exploratory study Qualitative study. Interviews of focus groups 46 persons, 15 men, the rest women. 28 had CD and 18 had UC. They were all members of the Crohn’s and Colitis UK charity. Between 27-80 years old and have had IBD diagnosed from 3 months up to 50 years. High
Daniel, Jm. in 2002, Canada Young Adults ‘ Perceptions of Living With Chronic Inflammatory Bowel Disease Qualitative study. Recorded interviews in focus group. Semi-structured. Phenomenological approach 5 participants, 3 men and 2 women. Participants between 18-24 years. Been diagnosed with IBD within 24 months prior to the study and who are currently treated medically for the disease with non-surgical intervention. Able to verbalize their feelings, speak fluent English and live in the vicinity of the designated geographic area of study. High
Frohlich, DO. 2014, United States Supportoften stigmafor inflammatorybowel disease outweighs peoplewith Qualitative study. Recorded individual interviews. Semi-structured. Phenomenological approach 14 participants, 7 men and 7 women, 7 had Crohn’s disease and ulcerative colitis had 7. Between 20 and 56 years old. Were recruited via the internet through support groups for people with IBD to reach out to people across the country.
Hall, NJ., Rubin, GP., Dougall, a., Hungin, AP., & Neely, j. 2005, United States The Fight for ‘ Normality ‘ Healthrelated: A Qualitative Study of the Experiences of Individuals Living with Inflammatory Bowel Disease Established (IBD). Qualitative study. Recorded individual and focus group interviews. Semi-structured. 31 participants, 19 women and 12 men. 17 of the participants had had UK and 14 CD. 15 participants took part in individual interviews and 16 only in 3 focus groups. Group 1 for women. Group 2 and group 3 for men mixed men and women. All participants should have had IBD for at least 2 years and by survey questions at the stage of recruitment was elected High
Lesnovska, k.., börjesson s., Hjortswang, h., & Frisman, g. 2013, Sweden. What do patients need to know? Living with inflammatory bowel disease Qualitative study. Recorded individual interviews, 12-67 min long those whose lives are most affected by IBD.
30 participants, 14 men and 16 women. They were recruited through an outpatient clinic and was chosen by the variation between gender, age, diagnosis, duration of IBD and history of operation would be visible. 18 participants had CD and 12 had UK and they were between the ages of 29-83 years. High

P-Lesnovska, p., Hjortswang, h., E., a.-c., & Hollman Frisman, g. 2010, Sweden. Patients ‘ Perspective of Factors Influencing Quality of Life While Living With Crohn Disease Qualitative study. Recorded 20-60 min long individual interviews 11personer, 6 men and5 women. 2983år, all of which are suffering from avCrohns disease. The participants were selected on the basis of strategic sampling among outpatients in a gastroenterological clinic at a hospital in southern Sweden. Inclusion criteria: 18 years or older, speak Swedish, not having any other illness and agreed to be recorded on tape. One participant had a foreign background. High

Sarlo, r., Barreto, c., & Domingues, t. 2008, Brazil. Understanding the experience of patients who have Crohn’s disease Qualitative study. Recorded interviews. Hermeneutic approach 8 persons in åldrarna20-59år. The participants skullevara diagnosed with Crohn’s disease and be over 18 years of age. Medium
Waljee, AK., Joyce, J.C.., Wren, PA., Khan, TM., & Higgins, PD. 2009, United States. Patient reported symptoms during an ulcerative colitis flare: A Qualitative Focus Group Study. Qualitative study. Interviews of focus groups Recruitment through journals from the University of Michigan. Persons who lived with the UK were asked och22 took part. Participants had to be over 18 years of age, have diagnosed with ulcerative colitis who have been confirmed by biopsy, and willingness to participate in and travel to any of interview locations. High

Appendix 4 content analysis
Sentence units Translation in Swedish Condensation Code Sub category Category
“The uncertainty and unpredictability of bowel urgency and flare-ups also contributed to social and living space restrictions” (Daniel, 2001). The uncertainty and unpredictability of tarmbrådskande and relapses are contributing to limited social and living space. The uncertainty and unpredictability adds to social constraints. Social constraints Social context affected A limited life world
“Many patients are concerned, because of the disgusting symptoms associated with the disease, that their partner will have a difficult time accepting them” (Frohlich, 2014). Many patients were concerned that their partner would find it hard to accept them because of the unsavory symptoms associated with the disease. Worried that their partner should find that symptoms are obnoxious and will not be accepted. Anxious not to be accepted. Relationship concerned A limited life world
“Interviewees saw their illness in terms of their bodies being ‘ under attack ‘ by an inconvenient, chronic, smelly, painful and embarrassing disease” (Hall et al., 2005) Participants saw their disease in terms that their bodies were “under attack” by an uncomfortable, lifelong,, smelly, painful and embarrassing condition. Looks to be under attack by the disease. attack of the disease Mixed emotions An emotional impact
“they perceved a lack of true understanding from family and friends” (Hall et al., 2005). They experienced a lack of true understanding from family and friends. Lack of understanding from relatives. Lack of understanding Not daring to tell An emotional impact
“Reapondents commented on the idea of having to live with chronic IBD forever. That the disease would remain a part of them for their entire lives was a major aspect of the disease for therespondents to come to terms with and accept “(Daniel, 2001). Participants commented on the fact of living with IBD livslåg forever with that disease would remain a part of them the rest of their lives. It is seen as an important aspect for participants to manage and accept it. The disease remains a part of them then it is lifelong. It is important to manage and accept it. Accept a lifelong disease. Adaptation and acceptance A change in daily life
“Powerlessness is a sense of losing control of life because of the disease. Being aware of the treatment, while living with a chronic disease and the Impotence is a sense of losing control of their lives because of the disease. To be aware of the threat and living with a chronic illness and The disease produces helplessness and loss of control of their lives because of the uncertainty of the treatment, scope and activities but also the fear of death. Powerlessness and loss of control of their lives.
Loss of control of one’s life
A change in daily life