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ong-term experiences after oesophagectomy/gastrectomy forncer—A focus group study§

arlene Malmstrom a,b,d,*, Bodil Ivarsson a,c,d, Jan Johansson a,b,d, Rosemarie Klefsgard a

kane University Hospital, Lund, Sweden

epartment of Surgery, Skane University Hospital, Lund, Sweden

epartment of Cardio-Thoracic Surgery, Skane University Hospital, Lund, Sweden

und University, Sweden

What is already known about the topic?

� Quantifiable data concerning patients after oesophagealor gastric cancer shows that quality of life, the first yearafter surgery, are negatively affected both regardingsymptoms and functions.

R T I C L E I N F O

icle history:

ceived 24 February 2012

ceived in revised form 23 July 2012

cepted 13 August 2012

ywords:

ncer

periences

strectomy

ng-term follow-up

sophagectomy

ality of life

A B S T R A C T

Background: After surgery for oesophageal or gastric cancer, patients suffer from a variety

of problems that affect their physical and mental health. Most previous studies on quality

of life after this type of surgery are based on quantitative methods, and no studies to date

have focused on the patient’s subjective experiences of their quality of life from a long-term

perspective.

Objective: To illuminate patients’ experiences of their quality of life, and how they handle

their new life situation, from a long-term perspective, after oesophagectomy or

gastrectomy for cancer.

Method: This study was carried out in accordance with a descriptive explorative design

focusing on the patients’ quality of life after surgery for oesophageal/gastric cancer. Data

collection was carried out using semi-structured focus group interviews. A total of 17

participants divided into 4 focus groups were included (2–5 years after elective surgery) in

the study. Data was analysed with qualitative content analysis.

Results: The results show that the patients’ lives are severely hampered by adverse

symptoms long time after surgery. The patients experienced the recovery period as a

struggle and the theme ‘‘When moving on becomes a struggle’’ was shown to capture the

patients’ experiences. The main problems that acts as barriers in the patients’ new life

situation are those connected with nutrition and diarrhea who was shown not only

affecting the patients from a physical perspective but also on a social and emotional level.

The feeling of losing control of life was shown as a prominent problem and resulted in

anxiety and fear about the future.

Conclusion: This study shows that the patients’ quality of life is heavily influenced by the

remaining symptoms for a long time after surgery. However the patients ability to handle

their new life situation does not only depend on the remaining symptom but on their

ability to take control of the new life situation and learn to live life whit the symptoms

instead of letting the symptoms limit their life. The complex new life situation that the

patients meet after surgery motivates the needs of a supportive care programme, focusing

on the patients’ physical, mental and social needs.

� 2012 Elsevier Ltd. All rights reserved.

This paper was submitted as an entry for the European Academy of

rsing Science’s Rosemary Crow award, sponsored by the International

rnal of Nursing Studies. The award is open to current doctoral students

recent graduates of the academy’s programme. Corresponding author at: Department of Surgery, Skane University

spital, SE-221 85 Lund, Sweden. Tel.: +46 46 175950.

E-mail address: Marlene.Malmstrom@med.lu.se (M. Malmstrom).

Contents lists available at SciVerse ScienceDirect

International Journal of Nursing Studies

journal homepage: www.elsevier.com/ijns

20-7489/$ – see front matter � 2012 Elsevier Ltd. All rights reserved.

p://dx.doi.org/10.1016/j.ijnurstu.2012.08.011

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M. Malmstrom et al. / International Journal of Nursing Studies 50 (2013) 44–52 45

Patients suffer from several side-effects after surgeryinvolving different aspects of their health.

What this paper adds

This qualitative study shows that even up to five yearsafter surgery the patients suffer from several problemsthat negatively affect all aspects of their quality of life.

This study indicates that the patients’ quality of life aftersurgery not only depends on remaining symptoms or theseverity of the disease after surgery but on the patients’ability to take control and handle the new life situation.

Based on the long-term reduction of quality of life andthe lack of ability to live life as the patients’ wishes aftersurgery, this study indicates that the patients are in needof physical, psychological and social support aftersurgery.

. Introduction

Several studies have shown that the quality of life (QOL)f patients after oesophageal/gastric cancer surgery iseduced (Blazeby et al., 2000; Djarv et al., 2008; Lagergrent al., 2007; Olsson et al., 2007) and that the patients sufferom a variety of problems that affect their physical,ental and functional health after surgery (Clarke et al.,

011; Lagergren et al., 2007; McCorry et al., 2009; Olssont al., 2002; Wainwright et al., 2007; Watt and Whyte,003; Verschuur et al., 2006; Viklund et al., 2006). Forxample, it has been pointed out that eating problems

ainwright et al., 2007), dysphagia (Watt and Whyte,003), lost identity (Clarke et al., 2011) and troubledjusting to life (McCorry et al., 2009) are problems thatffect the patients lives after surgery. Some patients feelepressed, lonely and abandoned and experience that theyst their normal life due to remaining problems after

urgery (Olsson et al., 2002). The outcome after surgery hasostly been reported in terms of survival, medical/clinical

nd other quantifiable variables (Blazeby et al., 2000;ourrech Staal et al., 2010; Djarv et al., 2008; Hallas et al.,001; Lagergren et al., 2007; McLarty et al., 1997; Olssont al., 2007; Viklund et al., 2006) and only a few studiesave focused on the patients’ subjective experiencesllowing surgery (Olsson et al., 2002; Wainwright et al.,

007; Watt and Whyte, 2003). To date, no study hasnalyzed how patients that survived the first critical yearsfter surgery experience their QOL during the recoveryeriod from a long-term perspective. In this study we usee term long term perspective when referring to the

atients’ experiences during the whole recovery period up five years after surgery.

Worldwide oesophageal cancer is the 8th and gastricancer the 4th most common cancer diagnoses (Nationaloard of Health and Welfare, 2009). In 2010 in Swedenere were 593 new cases of oesophageal cancer (including

ardia) and 836 of gastric cancer (total number ofhabitants in 2009, 9.4 million), (National Board of Health

nd Welfare, 2010). Surgery, alone or in combination withhemotherapy or radiotherapy, is the only establishedeatment and thus offers the only possibility of a

ure (Wu and Posner, 2003). After oesophagectomy or

gastrectomy the planned hospital stay is approximatelytwo to three weeks, and the expected recovery period is atleast one year. The prolonged recovery period, as Allvinet al. (2007) pointed out as an energy-requiring processincluding physiological, psychological, social and habitualrecovery, increases the challenges for this group of patientsafter surgery. Even though survival after surgery, for bothoesophageal and gastric cancer, has gradually improved,the 5-year survival rate remains at only 28% and 27%respectively (Anderson et al., 2011).

To be able to adapt the support and follow-up forpatients after surgery it is essential to gain an under-standing of their experiences of their QOL and to discoverhow they handle their life after surgery, from a long-termperspective. Today there is no universal accepted defini-tion of QOL and it is known that the meaning of the conceptvaries in different areas of application. The World HealthOrganization, Quality of Life Group (WHOQOL) (1995)define QOL as ‘individuals’ perceptions of their position inlife in the context of the culture and value systems in whichthey live and in relation to their goals, expectations,standards and concerns’. To be able to distinguish betweenQOL in the broader sense and QOL connected with apatient’s health, the concept of Health related Quality ofLife (HRQOL) are often used (Fayers and Machin, 2007).According to Fayers and Hays (2005, p. 346) HRQOL is amultidimensional construct which refers to the ‘subjectiveevaluation of one’s ability to perform usual tasks and theirimpact on one’s everyday physical, emotional and socialwell-being’. QOL/HRQOL is often measured by standar-dized quality of life questionnaires which reflect pre-determined aspects of quality of live. However, it is shownin other contexts that there may be important aspects ofquality of life that are not sufficiently covered by thosequestionnaires. The use of qualitative interviews couldtherefore highlight aspects of QOL that would be risked toremain unobserved by the exclusive use of QOL ques-tionnaires (Abbey et al., 2011). These essential dimensionsare, therefore, used in an attempt to understand thepatients’ experiences after this extensive surgery thatsubsequently so severely affects the patient’s life. In thisstudy we use the term QOL when referring to the HRQOL ofthe patients after surgery.

Patients who have undergone surgery for oesophagealor gastric cancer are frail due to reduced QOL (Blazebyet al., 2000; Djarv et al., 2008; Lagergren et al., 2007; Olssonet al., 2007) and have a low expected survival rate(Anderson et al., 2011). Studies focusing on the patientslife after surgery have shown that it is impeded by a varietyof physical and psychological shortcomings (Olsson et al.,2002, 2007; Verschuur et al., 2006; Viklund et al., 2006)and quantitative studies focusing on QOL of patients aftersurgery show that the quality of life is affected in generalareas such as fatigue, appetite loss and diarrhea as well asin specifically oesophageal areas such as eating problems,coughing, reflux and gastroesophageal pain (Djarv et al.,2008; Viklund et al., 2006). It has also been shown that thepatient’s mental status is affected for a long time aftersurgery (Verschuur et al., 2006). To date, the main focus inclinical research has been on the quantifiable perspective,measured using standardized instruments within the area,

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M. Malmstrom et al. / International Journal of Nursing Studies 50 (2013) 44–5246

t there has been a lack of studies approaching the sameea from a qualitative perspective. The qualitative studiesat are available concerning this patient group has beencusing on different areas of the patients life after surgery. dysphagia (Watt and Whyte, 2003), living withsophageal cancer (Andreassen et al., 2006) and thejustments concerning identity (Clarke et al., 2011) ande new life situation after surgery (McCorry et al., 2009).

our knowledge only one study has focused on thetients’ subjective experiences of QOL after surgerylsson et al., 2007) and no studies has focused on thetients that survived the first critical years after surgeryd how the experienced their QOL from a long-termrspective. To be able to adapt the follow-up after surgery understanding of the patients’ subjective experiences

a holistic level is required.

. Aim

The aim of the study was to illuminate patients’periences of their quality of life and how they handleeir new life situation from a long-term perspective aftersophagectomy or gastrectomy for cancer.

Method

The study was carried out whit a descriptive, explora-e design and the interviews was conducted andalysed according to qualitative content analysis (Baxter,91; Graneheim and Lundman, 2004). Qualitative con-

nt analysis is often used as a method to draw validnclusion from data within their context and aim toterpret the meaning of the content of the data (Baxter,91). Based on the study aim, content analysis wasosen as a suitable method of analysis in this study.

. Recruitment and participants

The former patients (hereafter referred to as patients)ere recruited using a database for oesophageal and gastricncer at a University Hospital in southern Sweden whereproximately seventy operations for such cancers arerformed each year. After surgery clinical follow-ups wereaintained for about two years. Thereafter, the patientsere referred back to the primary care physician withouty further follow-up at the department of surgery. At thee of the interviews none of the authors were involved in

e care of the patients included in the study.Inclusion criteria for this study were: elective surgery

r oesophageal or gastric cancer, ability to communicate

in Swedish, and place of residence in southern Sweden.Patients that went through an acute surgery, had cognitiveimpairment or suffered a relapse of the cancer diseasewere excluded. The interviews were conducted 2–5 years(24–60 months) after elective surgery and focus on thepatient’s experiences during the whole recovery period. Inthis study cardia cancer is included in the concept ofoesophageal cancer based on the TNM classificationsystem (AJCC, 2010).

All eligible patients (N = 27) who were identifiedthrough the register were sent an information letter andan informed consent for them to sign. One week later thefirst author (MM) telephoned the patients to give furtherinformation about the study and to ask if they were willingto participate in the interviews. Patients who wereinterested in participating, were asked to sign and returnthe consent form. Of the twenty-seven eligible patientsnine declined participation due to illness and one failed tocome to the interview.

2.2. Ethical considerations

The study was conducted in accordance with theHelsinki Declaration (WMA, 2008) and was approved bythe Regional Ethics Board, Lund, Sweden (Dnr: 2009/117).All patients received both written and oral informationprior to the study. The patients were informed that theycould withdraw from the study at any point without anyexplanation and that data was going to be kept con-fidential. The patients had the opportunity to meet with asocial worker if a need would occur after the interviews. Nopatients had the need of such a contact.

2.3. Data collection

The study was based on four focus group interviews,conducted in May 2009, with between three and fiverespondents in each group, 17 respondents in total (Table1). The interviews were carried out in a separate room inthe hospital library which is the most neutral site in thehospital and lasted between 110 and 135 min. The patientshad the opportunity to choose which interview occasionthey preferred to attend, but in planning the interviewsvariations in sex, age and type of surgery were taken intoaccount. The first author (MM) moderated the interviewsand attempted to help the respondents to focus on thetopic (Krueger and Casey, 2009) while the second author(BI) assisted by asking probing questions and keepingnotes during the process. An interview guide inspired byFayers’ and Hays (2005) description of health-related

ble 1

mographic characteristics of the patients (N = 17).

Interview 1 (n = 5) Interview 2 (n = 4) Interview 3 (n = 5) Interview 4 (n = 3)

ender (man/woman) 4/1 4/0 4/1 2/1

ge, median (range) 70 (46–77) 64 (52–87) 60 (49–74) 62 (58–89)

iving alone (yes/no) 1/4 1/3 1/4 2/1

orking (yes/no) 1/4 1/3 3/2 1/2

ears since surgery median (range) 4 (2–5) 3 (2–4) 2 (2–4) 3 (3)

urgery (oesophagectomy/gastrectomy) 3/2 1/3 4/1 3/0

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M. Malmstrom et al. / International Journal of Nursing Studies 50 (2013) 44–52 47

uality of life (HRQOL) was used as support to focus on theifferent aspects of HRQOL. The interviews started with anpen question: When you look back at the time since your

peration, how would you describe your health/health-related

uality of life? To ensure the quality, structure and contentf the interview guide, the first interview was served as ast interview, but as no subsequent changes were made it

as been included in the study. After the third interview,ata was regarded as saturated. In order to confirm that norther information would appear a fourth interview was

onducted.

.4. Data analysis

The study was carried out using a descriptive explora-ve design with focus group interviews as the dataollection method (Krueger and Casey, 2009). The inter-iews were recorded as a data file and transcribederbatim. Data analysis was carried out using qualitativeontent analysis focusing on both the manifest contentluminating the explicit, visible content of the text, and thetent content illuminating the interpretation of theeaning and the underlying meaning of the text (Gran-

heim and Lundman, 2004). The analysis was carried out ineveral steps, inspired by the methodological structurerovided by Graneheim and Lundman (2004). In the firsttep the text was read through as a whole to get an overallnderstanding. In the second step the text was read again,cusing on identifying meaning units that were related toe aim of the study. In step three the meaning units were

xtracted from the text and condensed while preservinge core. In step four the condensed meaning units were

bstracted into codes and categories that met the studyim. The first and second steps were carried out by the first

M), second (BI) and last author (RK) individually anden all authors came together to discuss the findings. Theird and fourth steps were initially performed by the first

uthor (MM) and then discussed with the other authors. Ine fifth and final step all the authors discussed the whole

nalysis and agreed together about the theme andategories revealed in the analysis (Table 2).

. Results

.1. When moving on becomes a struggle

When normal physical and psychological functions areo longer natural, uncomplicated parts of life, the patient’s

life situation is affected in several different ways. Thepsychological, physical and social difficulties are experi-enced as multidimensional and affect and reinforce eachother. When the patients feel that they are unable toinfluence their new life situation, living an ordinary lifebecomes a struggle which is expressed either as a chain ofnegative thoughts or a choice to fight to get better. The newlife situation becomes a static condition based on thedifferent impairments and moving on with life becomes astruggle.

3.1.1. Losing control of the future

The patients feel that control of the future is linked tothe ability to know what is happening around them, bothregarding their life and their health. After surgery thiscontrol disappears because they do not know what thefuture holds for them. Control is experienced as afundamental part of recovery and not knowing what toexpect induces feelings of despair. At the same time, thehope and longing to get better helps them to try to moveon. Even though the patients experience a loss of controlover their life the time is experienced as a healingparameter which gradually helps them to adapt to thenew life situation.

3.1.1.1. Hovering between hope and despair. The patientsstate forcefully that hopes for their future are affected bythe disease and recovery. When rehabilitation proceedsaccording to the patients’ expectations it induces positivefeelings which provides the energy to continue exercisingand keeps negative thoughts in check. The patients expressthat even a small change in a physical symptom, e.g. paincan lead to negative thoughts about their prognosis andresult in fear about the risk of relapse of the cancer disease.Many patients lost hope of recovery and started to plan forthe future by e.g. writing their wills. Not knowing aboutthe chances of survival is experienced as being ‘‘out ofcontrol’’ and the lack of knowledge results in decisions andpriorities for the future being based on existential thoughtsand fear rather than knowledge.

I feel afraid. I was really tired in the autumn and felt thatthere might be something going on and that sort ofthing. That feeling of anxiety that something new isgoing on. Then as soon as I feel better those thoughtsdisappear too. (Interview 3)

Patients express that their state of mind is affected bythe disease and some experience the loss of joy in life. Not

able 2

heme and categories reflecting the patients experiences.

Theme:

When moving on becomes a struggle

Categories:

Losing control of the future Impaired bodily function an impediment

in daily life

Handling the new social situation

Sub categories:

Hovering between hope and despair When eating becomes an obligation Making choices based on impaired health

Time as a healing parameter Losing control of elimination Being embarrassed by the new shortcomings

Disturbed sleep reduces choices in life

Recovery affected by pain

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M. Malmstrom et al. / International Journal of Nursing Studies 50 (2013) 44–5248

ing able to continue living life as before the operationsulted in feelings of disappointment and despair. Thetients experienced their state of mind either asctuating, based on physical functions or as a long-ting feeling of depression which is hard to change. Therception of being left alone with the disease and beingable to change the situation have a negative effect on thetient’s life.

I don’t think anything is fun . . . Rather that life isdisappearing from me. I fret, I think.//You are supposedto have to have fun when you can . . . and live until youbecome a pensioner . . . (Interview 4)

.1.2. Time as a healing parameter. According to thetients, time is a parameter that gradually reduces

ar and anxiety. When the time after surgery passedd the symptoms remained unchanged the patientseded to learn to live with the new conditions andpe with their new situation. Choosing to take control

the situation and start to live with the remainingmptoms instead of fighting them became a relief fore patients.

. . . at any time it can be spread and any time they mightfind [metastases] . . . but this is something I have to livewith. So it’s a bit of an up-and-down feeling, but themore time goes on the less it gets. (Interview 1)

.2. Impaired bodily function an impediment in daily life

Patients struggle with several different physicaloblems for several years after surgery that preventem from living the kind of life they want. Theseoblems originate from different parts of the body, affectfferent aspects of life and result in impaired physicalnction.

.2.1. When eating becomes an obligation. Eating isperienced as an important part of the new life afterrgery and issues connected with eating are often aurce of worry and anxiety. Some patients stated thatey were able to eat whatever they wanted with nooblems or worries about weight loss, but most patientsperienced problems with eating, lack of appetite,anged sense of taste or weight loss. These symptomssulted in feelings of anxiety, fear, frustrationd dissatisfaction with themselves and with theircovery.Incorporating the new way of eating into the new life

uation is described as seeking balance. The line betweenting too little or too much is narrow and crossing itsults in the risk of either weight loss or nausea. The newting situation is no longer based on eating when hungry,t on planning food intake in advance and preparing food,ver knowing if they will be able to eat it. The new eatinguation has changed from being a positive social eventto an obligation.

. . . you would eat. I was afraid of losing weight.//Andthen I saw the food in front of me all the time, no notagain. . . . Then I just lost my appetite completely.(Interview 2)

3.1.2.2. Losing control of elimination. Diarrhea and con-stipation are symptoms experienced as difficult in thecontext of elimination. Frequent and sudden diarrhea is aconsiderable problem as it results in both uncertaintiesabout when it will happen and stomach ache, engenderingthe feeling of losing control of the bowel. The patientsdescribe that they sometime are free of symptoms from thebowel and at other periods the problems are very frequentand limiting. The patients also describe having problemswith constipation, gas and rumbling stomach and thatthese problems affect their everyday life.

I can be OK for long periods, and then I get into a badperiod again. Then I have to balance this up again, it cantake several days of loose stools. Three to four times aday and it runs out of you. (Interview 2)

3.1.2.3. Disturbed sleep reduces choices in life. Disturbedsleep was pointed out as a key problem that negativelyaffected both life and rehabilitation after surgery andthat was influenced by physical activity, bowel habits,pain, reflux, heartburn and existential thoughts. Due tolack of sleep the patients experienced tiredness duringthe day resulting in inactivity, reduced physical functionand depressive symptoms which in turn became anegative spiral that the patients felt that they couldnot stop.

Well, if you can’t sleep you never feel fully rested, howthe devil are you going to manage a job.//I’m never onform, always tired, . . . there’s nothing left, no strengthany more, then I think you feel a lot more of the othertoo. I feel bloody bad. If I’d been really rested then Icould have taken a blow or two. Now I just crumble forthe slightest thing. (Interview 3)

3.1.2.4. Recovery affected by pain. Many patients did notfeel any pain at all while others had long-term chronicpain. The pain was experienced both as stomach ache andas numbness due to surgery related nerve damage oftenlocated in the back. Those who suffered from pain duringthe recovery period found the pain management unsa-tisfactory. The pain also affected their recovery in terms ofboth inactivity and state of mind.

. . . It makes no difference what I do. If I stretch out andlift something then it’s just as if everything inside mebursts.//‘That’s how it is’, they say. It’s the only thingthey tell me, ‘that’s how it is’. (Interview 3)

3.1.3. Handing the new social situation

After surgery physical and psychological limitationswere resulting in changes in the patients’ social life.They felt that their social network was important but atthe same time that the network of friends and familywas contracted after surgery. How the patients managetheir social life after surgery varied and the choicesregarding social life were often based on their healthstatus and the risk of embarrassment that their situationcould cause.

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M. Malmstrom et al. / International Journal of Nursing Studies 50 (2013) 44–52 49

.1.3.1. Making choices based on impaired health. Based onhe various physical shortcomings, the patients makehoices about how to live life from a social perspective.he patients said that having constant physical problemsesulted in a smaller social network and isolation. Theylso stated that they avoided leaving home due to theisks connected with their physical problems. Examplesf these problems are getting diarrhea and not beingble to reach a toilet in time or being attacked bytomach pain or nausea while eating. Deciding not tottend social events is seen in the long-term as shrinkingheir social network and leading to isolation whichffects the patients’ state of mind. Their social networkas experienced as important and the lack of contact

ecame a source of grief. Even if most of the patientsvoided social events some chose to continue attendingecause of the value and support they felt they derivedom their social network.

I avoid going out to see people. Before I used to see mybrother, I would stay over, have a drink and then drivehome the day after but I’ve said no to this since theoperation because of the thought of all the visits to thetoilet. They do have several toilets, but I prefer to be athome so that I’m near to my own and so that therewon’t be any accidents. (Interview 1)

.1.3.2. Being embarrassed by the new shortcomings. Theatients felt that their new situation was filled withhortcomings that were embarrassing to reveal to others. Aumbling stomach at a meeting, eating only half portionsnd the risk of not reaching a toilet in time are somexamples. Being unable to eat a proper meal whenttending social events led to fears that those who hadvited them might think that they did not appreciate theod. Being forced to order half a portion at a restaurant oraving food at the plate felt both embarrassing andasteful.

I’d like to go out and eat, but going to a restaurant andhaving one of those lovely steaks or whatever and thenperhaps being able to eat only a small piece becausethen it’s stop, because I know if I’ll eat more then I’llhave problems . . . (Interview 1)

. Discussion

By focusing on the patients’ experiences of their qualityf life and how they handle their new situation afterurgery for oesophageal or gastric cancer, this study hasevealed the theme ‘‘When moving on becomes a struggle’’.

hese findings suggest that the patients’ lives are severelypeded by the symptoms remaining after surgery. Even

ough the patients felt that all the symptoms affectedeir life, many experienced nutritional and bowel

roblems as the major barriers to their moving on withfe. The outcome, in terms of the patients’ experiences ofeir quality of life, is based on their ability to take control

f the situation and live their life with the symptoms ratheran let the symptoms control their life.

4.1. Methodological considerations

In qualitative studies the concept of trustworthiness isoften evaluated in terms of credibility, dependability andtransferability (Graneheim and Lundman. 2004; Polit andBeck, 2004). To increase the credibility, the respondents inthis study were encouraged to share their experienceswithout any pressure to reach consensus with the aim ofhaving a fruitful discussion within the area. The patientssaid that having the opportunity to listen to other people’sstories helped them to remember and formulate their ownmemories. The number of persons in a focus group variesaccording to the characteristics of the group (Krueger andCasey, 2009). In this study the number of patients wasconsidered sufficient for the subject addressed. It ispossible that those who declined participation due tothe severity of the disease would have chosen toparticipate if individual interviews had been used forthe data collection. However, the authors of the presentstudy believed that the advantages of focus group inter-views in this study exceeded the potential disadvantages.

At the time of interviews, the respondents had livedminimum two and maximum five years since the surgery.This is one fact that may have affected the respondents’experiences and thereby the dependability of this study.This is discussed by Christianson and Loftus (1991) whostate that persons who have experienced special ortraumatic events often remember these quite well, eventhough time has passed since they occurred. The fact thatthe time between the surgery and the interview variedmay have been a contributory factor that affected thevariation and depth of the patients’ stories, therebystrengthening the credibility of this study.

The interviews were analyzed by three of the authors.To limiting potential influence of the authors pre-under-standing one had not participated in the interviews whichgave the opportunity to see the text with ‘‘new eyes’’. Thisway of seeking agreement with co-researchers strengthenscredibility according to Graneheim and Lundman (2004).To take this further quotations are used to confirm thefindings and the interpretation.

In this study the aim was to explore the patients’experiences after both oesophageal and gastric cancersurgery. From a physical perspective there are differencesregarding the problems and symptoms that are to beexpected due to the anatomy of the upper gastrointestinaltract after surgery. The aim was to allow the patients todescribe their experiences of their health after surgerywithout trying to find problems specific for each type ofcancer but to see the variety of problems and the patients’experiences of them in terms if their QOL.

Focus groups interviews reflect problems from thepatients’ point of view, rather than that of the constructorof a questionnaire. Performing focus group interviews islabor intensive, and is not a clinical tool that can be used ina standard follow-up programme after surgery as astructured quality of life questionnaire can be. However,the results from focus group interviews, where post-operative problems and thoughts emerge from thepatients’ point of view, may reveal important knowledgeabout postoperative quality of life that is not revealed by

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M. Malmstrom et al. / International Journal of Nursing Studies 50 (2013) 44–5250

ndard quality of life questionnaires (Abbey et al., 2011).e advantage in letting the patients’ share their experi-ces in focus groups about their health after surgery isat they have the opportunity to narrate their own storyd focus on what is important for them instead of onswering questions on what we as researchers believe isportant.The transferability of the findings in qualitative studies

pends on the degree of similarity between studypulations and the actual settings. Graneheim andndman (2004), claim that the author can make sugges-ns regarding transferability to other contexts but that itthe reader’s task to determine whether or not the resulttransferable. The findings in this study suggest that thesult may be transferable to patients suffering from

ilar conditions in comparable contexts.

. Result considerations

The new situation after surgery for oesophageal orstric cancer meant a life with several challenges for thetients since their everyday life was shown to haveanged in both a psychological, physical and social way.rlier quantitative studies have shown a complex picture,ith no consensus regarding the patients’ quality of lifeer time. Some studies state that the quality of live, in thistient group, is considered good (Courrech Staal et al.,10; Hallas et al., 2001) while others show significantlyduced quality of life a substantial time after surgeryjarv et al., 2008; Lagergren et al., 2007; Olsson et al.,07; Viklund et al., 2006). However, this qualitative studyplies that the patients’ quality of life remains reduced up

5 years after surgery but that some of the respondentsperienced a gradual improvement of their health over

e. The knowledge about the fact that QOL is reduced forch a long time after surgery is important to have in mindhen informing patients prior to surgery, enabling them toake informed decisions about their care.

The patients’ experiences could be divided into threefferent areas that were all important when consideringd trying to describe their life situation after surgery. Theeas identified in this study reflect physical, psychologicald social aspects of their life and is also suggested fromher studies (Andreassen et al., 2007; McCorry et al.,09; Wainwright et al., 2007). Knowledge about themplexity of the patients life situation after surgery areportant to consider when it comes to decision-making

garding planning of medical treatment as well as nursingre after surgical intervention.The patients state that negative changes in theirysical status results in feelings of losing control of life.ar of relapse of the cancer and concerns about survival isown being a prominent problem for the patients in thisdy as well as in several other (McCorry et al., 2009;

sson et al., 2002; Verschuur et al., 2006). The patientsver between hope of getting better and despair, whichsults in anxiety and fear. The results in this study showedat the patients’ feelings about the future came to besed on their own questions and fears instead of facts.cCorry et al. (2009) states that patients attempt toaintain a positive attitude toward their heath and their

recovery by trying not to give in to negativity. In this studythat is expressed as a need to take control of the situationand move on with life. The result suggests that an earlyidentification of the most vulnerable patients may lead to abetter quality of life. Considering what to do to help thepatients to remain hopeful during the long and strenuousrecovery period and at the same time being honest aboutthe prognosis is a balancing act for the healthcareprofessionals working with this patient group because ofthe short survival time.

Nutritional problems e.g. dysphagia, weight loss, lack ofappetite and changed sense of taste are widely discussed instudies concerning this patient group (Andreassen et al.,2006, 2007; Clarke et al., 2011; Hallas et al., 2001;Lagergren et al., 2007; McLarty et al., 1997; Olsson et al.,2007; Wainwright et al., 2007; Watt and Whyte, 2003;Verschuur et al., 2006; Viklund et al., 2006) and the resultfrom the present study complements these findings bygiving the experiences and symptoms a story and a depththat was previously lacking. The patients in this studydescribed eating as a challenge as they needed to learn toeat again based on different rules than before. Pleasure inconnection with eating was transformed in to feeling asbeing obliged to eat. In this study, as well as in that byClarke et al. (2011) the patients express that they needed toplan and organize their meals which led to lack ofspontaneity. Beyond the physical difficulties connectedwith eating that have been highlighted both in this studyand in several others (Djarv et al., 2008; Olsson et al., 2002,2007; Verschuur et al., 2006; Viklund et al., 2006) thepsychosocial influence on the patients’ lives was said to besubstantial. Feeling embarrassed about eating in publicand/or being unable to control how their body would reactwhen eating (e.g. nausea, vomiting) resulted in manypatients isolating themselves from their social network.Both McCorry et al. (2009) and Wainwright et al. (2007)describe the patients’ experiences as a stigma associatedwith the new eating behaviors and Watt and Whyte (2003)adds that the problems with dysphagia affect all areas ofthe quality of life after surgery. The patients described howthey were struck by the problems that the new eatingsituation brought to their lives and helping the patients inthis new situation is important. These findings emphasisethe need for close contact with a nutritionist throughoutthe whole recovery period and making this possible for thepatients is an important task for healthcare.

Changed bowel habits e.g. diarrhea, was shown toseriously affect the patients’ life throughout the wholerecovery period. These problems have been reported inseveral studies (Djarv et al., 2008; Olsson et al., 2002, 2007;Verschuur et al., 2006; Viklund et al., 2006) but the impactthat the diarrhea has on the social life of the patients is notwidely discussed. The problem is shown to be significant inthis study and just as limiting for social life as thenutritional problems. It is important for physicians andnurses to discuss these problems with the patients aftersurgery and to both describe why the problem occurs andwhat the patients can do to relieve them.

Even though there is strong evidence that the majorityof the patients have several ailments that often reducetheir quality of life after surgery (Lagergren et al., 2007;

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M. Malmstrom et al. / International Journal of Nursing Studies 50 (2013) 44–52 51

cCorry et al., 2009; Wainwright et al., 2007; Watt andhyte, 2003; Verschuur et al., 2006; Viklund et al., 2006),ere are substantial differences in how they manage their

fe situation. In this study the majority of patients feltat their problems made it difficult for them to live life asey wanted, while other patients stated that they hadade the choice to take control over the situation and get

n with life. Based on the result of this study we are unable say whether the way of managing the situation was due e.g. personality, the severity of the disease or whetherere are other factors that could be influenced by the

ealthcare personnel giving the patients a better chance ofccepting the new life situation and going on with theirves.

According to Wainwright et al. (2007) it is the canceratients’ selfhood that determines whether the patientsiew themselves as survivors or victims of the disease.ithner and Zilling (2000) state that preoperative informa-on helps the patients to prepare themselves for theostoperative period and thereby reduce negative experi-nces after surgery. Even if that study was conducted innother context, involving less advanced surgery, the

plications might be that giving patients’ access toupportive care after surgery could help them to focus onving instead of on the disease. Based on the result of thistudy it is clear that the patients live their life after surgeryeeting several physical, mental and social limitations. The

atients new life situation after surgery is complex whichesults in a greater need of supportive care during theostoperative period. Howell et al. (2008) states that nurse-d models of supportive care has the potential to reducenmet social care needs as well as improve continuity ofare and health related quality of life of cancer patients.

. Conclusion

This study shows that the patients’ quality of life iseavily influenced by the remaining symptoms for a longme after surgery. However, the patients ability to handleeir new life situation does not only depend on the

emaining symptom but on their ability to take control ofe new life situation and learn to live life whit the

ymptoms instead of letting the symptoms limit their life.he complex new life situation that the patients meet afterurgery motivates the needs of a supportive care pro-ramme, focusing on the patients’ physical, mental andocial needs. Further research focusing on developing and

plementing supportive care programmes is needed ife QOL of the patients after surgery are to be enhanced.

cknowledgements

This study was supported by grants from Skaneniversity Hospital and the Sodra sjukvardsregionenouthern Regional Health Care Committee]. We would

ke to express our greatest thanks to Jeanette Oestreichilsson for skillful help transcribing the interviews.

onflict of interest

Funding

The study was funded by grants from Skane UniversityHospital and the Southern Regional Health Care Commit-tee. The funders have not been involved in any part of thestudy.

Ethical approval

Ethical approval for this article given by Regional EthicsBoard, Lund, Sweden (Dnr: 2009/117).

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