ORIGINAL ARTICLE

Struggling with food and eating—life after major uppergastrointestinal surgery

Sharon Carey & Rachel Laws & Suzie Ferrie &

Jane Young & Margaret Allman-Farinelli

Received: 20 February 2013 /Accepted: 16 May 2013# Springer-Verlag Berlin Heidelberg 2013

AbstractPurpose Few qualitative studies have explored patients' ex-perience of food and eating following major upper gastro-intestinal cancer surgery. The aim of this article was toexplore the longer-term impact of different types of majorupper gastrointestinal surgeries on people's relationshipwith food.Methods Twenty-six people having had major upper gastro-intestinal cancer surgery greater than 6 months ago partici-pated in semi-structured interviews. These interviews aimedto explore a person's physical, emotional and social relation-ship with food and eating following surgery. Interviewswere tape-recorded, transcribed and analysed using an in-ductive thematic analysis approach.Results Interview findings revealed a journey of adjustment,grieving and resignation. The physical symptoms and expe-riences of people differed between types of surgery, but thecoping mechanisms remained the same.Conclusions The grieving and resignation people experi-enced suggest adjustment and coping similar to that of some-one with a chronic illness. Remodeling of health services is

needed to ensure this patient group receives ongoing manage-ment and support.

Keywords Gastrointestinal surgical procedures .

Coping behavior . Qualitative research

Introduction

People who are eligible for surgery for major upper gastro-intestinal cancers, such as cancer of the oesophagus, stom-ach and pancreas are considered among a lucky few. Only11–20 % of people diagnosed with such cancers are suitableto have surgery, due to the aggressive nature of the disease[1–3]. However, 5-year survival rates are low, and recoveryafter surgery means learning to adapt to a reduced functionalcapacity. Anatomical changes in gut structure and functionfollowing surgery causes specific difficulties related to eat-ing, including lack of appetite, reduced functional capacityto eat, reflux, nausea, vomiting and malabsorption [4, 5].Different surgical procedures give rise to different symp-toms, so that oesophagectomy may predominantly causeearly satiety and reflux, while gastrectomy or pancreaticresection is more likely to cause malabsorption. Managingsuch symptoms requires significant long-term dietary mod-ification [6], and despite these efforts many patients will failto maintain a reasonable nutritional status and quality of life[7]. Recent literature indicates that patients lose, and neverregain, approximately 10 % of their body weight after havingmajor upper gastrointestinal cancer surgery [4, 5, 8].

Societal attitudes to body weight and body image arecomplex and have significant implications for patients' qual-ity of life and health behaviours [9]. Nutritional decline aftermajor surgery is expected by patients, at least early in thepostoperative period. It has been suggested that this couldaffect motivation to comply with dietary advice and compro-mise long-term nutritional management [8, 10], potentially

S. Carey (*) : S. FerrieDepartment of Nutrition & Dietetics, Royal Prince AlfredHospital, Missenden Road Camperdown( NSW2050, Sydney, Australiae-mail: sharon.carey@sswahs.nsw.gov.au

R. LawsPrevention Research Collaboration, School of Public Health,University of Sydney, Sydney, Australia

J. YoungSydney School of Public Health, University of Sydney,Sydney, Australia

S. Carey : S. Ferrie :M. Allman-FarinelliSchool of Molecular Biosciences, University of Sydney,Sydney, Australia

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leading to worse outcomes. To address this, it is important tounderstand patients' perceptions of weight loss and experienceof functional changes after major surgery, and a qualitativemethodology is indicated. Qualitative methods are essential todescribe a phenomenon from the perspective of the personconcerned [11], particularly for issues that are subjective,multidimensional and difficult to measure quantitatively.Since body weight, food and eating are social and emotionalphenomena as well as nutritional ones [12], wide variationmight be expected in how they are perceived and expressed.Qualitative methods allow these issues to be explored in waysthat go beyond observation or calculation. This is importantfor gaining insight into complex, subjective experiences suchas altered eating and body function, and factors affectingmotivation, in order to provide meaningful support to thesepatients and inform improvements in service provision.

Qualitative methods have already been used in someresearch exploring life after major upper gastrointestinalsurgery, but few have focused on eating and nutrition. Themajority of this research has focused on the initial post-operative months [10, 13–16] and has included an explora-tion of issues around loss of appetite. This research hasdetailed the complex physical and psychosocial issues thatarise when one is struggling to maintain body weight andlearning to eat after major surgery. However, as these studiesfocused on patients 0–6 months post-surgery, many of theconcerns of the participants were closely linked to the notionof cancer recurrence; and issues around eating were impliedto be transient, as people learned to eat again.

Qualitative research exploring longer-term survivorshiphas focused on oesophageal cancer surgery [17, 18].McCorry et al. [18] interviewed 12 oesophagectomy pa-tients and 10 carers 1–17 years after surgery. While thisstudy raised themes about learning a new way to eat aftersurgery, the main focus was social and emotional supportand the role of the carer. Only one qualitative study haslooked at other types of major upper gastrointestinal surgeryalong with oesophagectomy outside the initial post-operative months [19]. While this study focused broadlyon exploring the first 12 months of life after major uppergastrointestinal surgery, issues around food and symptomsrelated to eating still emerged as a theme, which includednot being able to return to previous eating patterns andphysical discomfort when eating. There appears to be nopublished qualitative study focusing on food issues inlonger-term survivors of gastric or pancreatic cancer surger-y. The potential malabsorptive symptoms associated withthese procedures mean that the longer-term implicationsmay differ from those of the oesophagectomy, making itimportant to include these in any study of nutrition aftergastrointestinal surgery.

The current study aimed to explore patients' physical,emotional, and social responses to food and eating after

major upper gastrointestinal surgery. This will allow a betterunderstanding of the longer-term experiences of this patientgroup and will provide insights into areas that could betargeted for service improvement.

Materials and methods

Participant selection

People having had major upper gastrointestinal cancer sur-gery with Roux-en-y reconstruction greater than 6 monthsago were included in this study. Consecutive people attend-ing three upper gastrointestinal surgeons' clinics were invit-ed to participate. The clinics covered surgery from threemajor hospitals in the former Sydney South West AreaHealth Service of New South Wales, Australia. Study par-ticipants were approached to participate in the study by theconsultant surgeon and those expressing interest were thencontacted by a research dietitian. Patients with known re-currence of disease, pyloric preserving surgery, inability toconsent, or living greater than 2 h from the centre wereexcluded from the study. The time period for recruitmentwas from August 2009 to December 2009 (Royal PrinceAlfred Hospital) and from May 2010 to August 2010(Bankstown Hospital and Concord Repatriation GeneralHospital). Two additional participants were recruited froman educational evening for people who had been treated forupper gastrointestinal cancer.

Data collection

The interview was designed to explore physical, behaviour-al, emotional and social issues surrounding food after sur-gery. Topics were derived from the initial process of con-ceptualization, and the resulting interview schedule waspiloted prior to commencing the study. Alterations weremade throughout the study to add further questions in responseto new themes that emerged while data collection was inprogress [20]. In accordancewith qualitative researchmethods,the interviews were semi-structured and the researchers' previ-ous knowledge and experience were subordinated as a ‘hiddenagenda’ [21] to avoid influencing the process of exploring thesubjects' own perceptions of the issues.

As well as qualitative data collection, basic quantitativenutritional data was also collected including weight andnutritional status (using Subjective Global Assessment(SGA) classification) [22].

All qualitative and quantitative data were collected byone researcher (SC). Qualitative interviews were conductedin the participants' homes while quantitative data was beingcollected, as the physicality of weighing the participants andso on prompted a richer dialogue. New themes were explored

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with participants as they emerged.While this study was aimedat exploring patients' personal experiences after surgery, carerswere not excluded, and their comments were also transcribedand included in the analysis. Interviews were recorded withparticipant permission.

Data analysis

Interviews were transcribed verbatim and coded using theNvivo (8th edition) qualitative computer software program(QRS International 2009). Each paragraph of the transcribedinterview was initially coded under broad categories; thesebroad categories were then coded further to identify higher-level conceptual themes. All codes were reviewed to iden-tify divergent and convergent themes using constant com-parison technique [23]. Data were analysed individually bytwo researchers (SC and RL), and themes were cross-checked. Outlying cases were noted and included withinthe analysis. This method of analysis is in line with aninductive thematic analysis approach [24].

Major quantitative findings are discussed elsewhere [8],but quantitative data (nutritional status and type of surgery)was used to explore qualitative differences.

Reliability/validity

Qualitative research methodologies are valuable for un-derstanding subjective experience. The inductive themat-ic analysis approach used in this study was consistentwith this research approach, providing narrative as op-posed to numerical/statistical results. Qualitative data isvalidated using four key criteria: credibility/truth value,transferability/applicability, dependability/consistency, andneutrality [25]. Credibility of the results was ensured bypurposeful sampling of participants by surgery type, timesince surgery, gender and clinic to ensure a wide range ofparticpant experience were represented in the results.Credibility of the results is also supported by the use of asecond independent coder; and by establishing appropriaterapport prior to interview and withholding the researcher'sown agenda from the interview structure. Transferability wasoptimized by interviewing a range of subjects with a variety ofgastrointestinal procedures and ensuring that the sample waswell-described quantitatively, to enable triangulation of thedata. Consistency was optimized by careful recording ofsources of variability in the data; by triangulation; and byusing a second independent coder. Neutrality or freedom frombias was ensured by using a semi-structured interview format(so that there is no implication of a ‘correct’ response); bywithholding the researcher's own agenda from the interviewstructure; and by transcribing all interviews in the participants'own words.

Ethics

This study was approved by the Royal Prince AlfredHospital ethics committee, Concord Repatriation GeneralHospital ethics committee and Sydney South West AreaHealth Service (Western Zone) ethics committee and ratifiedby the University of Sydney human ethics committee.

Results

Seventeenmales and nine females participated in the interviews.Basic demographic and nutritional data is shown in Table 1. Themajority of participants were retired, over the age of 65 and hadsurgery over 2 years ago. The total number of themes arisingfrom the 26 interviews was 24, from which seven main themeswere identified. These fell into two overall groups: ‘life aftermajor surgery’ and ‘coping’. The first of these had differentelements for physical, social and emotional aspects of life aftersurgery, and even though the emphasis on these three categorieswas different for individual patients, the distinction betweenthem remained robust to the end of data collection.

Life after major upper gastrointestinal cancer surgery

Physical symptoms

“After the operation I couldn't eat, it (the weight) justcame off. You can't eat a lot at first you tend to feelnauseated and vomit a lot and I'm the person who eatsfast so I found that very difficult. I found if I ate fast Iwould just bring it up again” (participant 23,pancreatoduodenectomy, 3 years ago).

Table 1 Participants' demographic and nutrition profile

Participants (n=26)

Male:female ratio 17:9

Age (years) 68.4 (range 35–87)

Body mass index (kg/m2) 24.1 (range 15.7–32.5)

Percent weight change (%) −9.2 (range −30.7–+9.7)

Subjective global assessment

Well nourished (A) 14

Mild/moderate malnutrition (B) 8

Severe malnutrition (C) 4

Type of operation

Oesophagectomy 7

Total gastrectomy 5

Whipples 8

Partial/subtotal gastrectomy 6

Time since surgery (months) 26.3 (6–126)

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Participants vividly remembered the first few months aftersurgery and the re-introduction of oral intake. They struggledwith a lack of appetite and not knowing how much food theywere able to eat in one sitting. People described frequent biliousand vomiting episodes as they attempted to manage larger mealsizes. On average, participants felt it took 6 months ofexperimenting until they regained confidence in eating, includ-ing knowing the portion sizes they could manage.

Participants also openly described the ongoing difficul-ties they experienced, even years after major upper gastro-intestinal surgery, which a health professional would con-sider as common consequences. These included frequencyand urgency of bowel motions, weight loss, lack of appetite,reduced capacity to eat, feelings of fullness, reflux, vomitingand bloating. As one participant described:

“I've tried eating little tiny bits, it doesn't matter, I getthe nausea, I get the bloating, I get the wind; you knowall those normal things, I'm assuming it's dumping, I'massuming that's an average thing” (participant 4,oesophagectomy, 3 years ago).

Distinct differences in symptoms were seen between thedifferent surgeries. Participants having had oesophagectomyand gastrectomy surgeries all described the upper gastroin-testinal symptoms of lack of appetite, feelings of fullness,reflux and vomiting:

“I feel like vomiting but never do. I get that afterI eat anytime, after most meals” (participant 21,oesophagectomy, 2 years ago).“Reflux is all the time, bile is a problem; and I can't eatanything, you know, Asian food, any spicy food, Icannot enjoy any food” (participant 7, total gastrecto-my, 2 years ago).

In contrast, participants having had pancreatoduodenectomysurgery described lower gastrointestinal symptoms such asbloating, flatulence and malabsorption (increased urgency andfrequency of bowel motions).

“Passing wind has got to be the worst, and you’reconscious of it all the time, and if you stop yourselffrom doing it, then you have severe stomach cramps”(participant 8, pancreatoduodenectomy, 10 years ago).“Sometimes when I have fish and chips an hour later Iam literally running to the toilet, and they are really oilyand smelly” (participant 15, pancreatoduodenectomy,1.5 years ago).

Weight

All participants were able to clearly recall their weighthistory and how much weight they had lost. Only oneparticipant gained weight after the surgery. Participants

who were well nourished (SGA A) recalled the weight lossafter surgery as a positive experience:

“My diet has changed, I am not doing ‘WeightWatchers’ and I can still keep this weight and maybedo all these things that put on weight, like have a bit ofchocolate every day” (participant 6, oesophagectomy,2.5 years ago, SGA A).

This group of participants positively stated they are nowa healthy weight, have more energy and are able to eatenergy dense food without gaining weight. Contrary to this,people who are now considered malnourished (SGA B/C)were faced with learning to live in a body physically verydifferent to what they were used to:

“I worry about my weight, it looks not good, it looksterrible. I'm not sick, I don't feel sick, you know, I'mhealthy. But when I look in the mirror ‘Oh so skinny’”(participant 11, oesophagectomy, 2 years ago, SGA B).

Those participants with significant weight loss describedphysical weakness, shortness of breath, feeling the cold,discomfort in sitting and financial costs of having to buynew clothes.

“I freeze, absolutely freeze. People laugh at me for thelayers of clothes…I will actually wear two pairs of socks,two pairs of pants and sometimes five layers on the top,just to stay warm” (participant 4, oesophagectomy,3 years ago, SGA C).

Emotional

The direct relationship between eating and symptoms thatparticipants experience results in a love–hate relationshipwith food:

“When I see food I think ‘I love food’; then I eat food Ithink ‘I love food’, but then I keep eating I think ‘I hatefood’” (participant 12, partial gastrectomy, 1 year ago).

For many people food and eating has become an unpleas-ant experience. Patients expressed a sense of anxiety aroundeating and the possibility of having unpleasant symptoms,particularly within a social context.

Social

The love–hate relationship that participants experience withfood can be difficult in a world where food is a social andcultural medium. People struggle to have control over theirintake during three-course meals, dim sim lunch (yum-cha),buffets, at social gatherings, and eating out where high-fat orspicy foods such as ‘Thai’ or ‘Indian’ cuisine are popular.There is great distress when the person who has undergone

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surgery actually comes from a culture where these high-fator spicy foods are traditionally eaten. One participant ofIndian descent explains:

“When my grandchildren visit we sit down to meals, Ihave my own rice porridge, I don't eat what they eat. Ican cook for them now, that's good, all the Indian food. Ican cook for them but I don't eat all the spicy food. It issomething I have missed but I am getting used to it”(participant 7, total gastrectomy, 2 years ago).

Some people choose to avoid any social situations wherefood is involved, to avoid symptoms, to minimise embar-rassment and financial loss. However, others learn strategiesfor surviving this social challenge, as one interviewee'sdiabetic wife says:

“Now we can eat out and it's pretty cheap isn't it! Imean we can get one main meal between the two of usbecause he can't eat much and I can't eat much, sothat's just perfect, isn’t it” (wife of Participant 5,oesophagectomy, 6 months ago).

Once again there is a clear difference between the differ-ent types of surgery, as the symptoms that may cause socialembarrassment are different. Oesophagectomy and gastrec-tomy surgeries resulted in concerns around the stigma of notbeing able to eat as much as others, with the risk of eatingtoo much and suddenly vomiting:

“I don't want to put myself in an awkward situation orembarrassing situation, you just have a baby plate orbaby portion because of reduced food intake” (partic-ipant 3, total gastrectomy, 3.5 years ago).

Participants who had pancreatoduodenectomy surgeryreported a much higher degree of anxiety about eating outin public. Bowel urgency and flatulence posed sufficientrisk of social embarrassment that some people chose to optout of social activities:

“I find that I can go [bowels open] up to three times aday, and it's terribly smelly, soft. I have been caughtout, I was out shopping and I was in the supermarketand I felt I needed to go, and I had to get out and goaround to the public toilets and I tell you what, I onlyjust made it, very embarrassing” (participant 14,pancreatoduodenectomy, 3 years ago).

Coping with life after major upper gastrointestinal surgery

Control

There was strong recognition from the participants that theirrelationship with food is now built around ‘control’. Controlis needed to ensure one does not eat too much or the wrong

types of food; and control is needed to push oneself to eatwhen one does not have any appetite. The degree of controlone has will directly determine the severity of symptomsand weight change.

“Of course I love food, I love cheese, I love all thedifferent types of cheeses, I can't sort of indulge in thatsort of stuff anymore. If I do it, it's kind of, out of, youknow, doing something sneaky, having the blue veincheese, if I eat it I know I'm going to be paying theprice the next day and I thought what the heck, let'sjust do it! So of course you're not enjoying it” (partic-ipant 14, pancreatoduodenectomy, 10 years ago).

Loss and grieving

“I was told I would lose weight but I would put backon a few kilos. I lost about 15 or 16 kilos but I neverput back on one gram. I feel, you know when I takemy clothes off I can see only bone, skin and bones andall those veins. I feel very sad, that is one thing thatmakes me very very sad because I really had a goodfigure for my age, for 70 years age. I was only 58 kilosand clothes used to look good on me, and I had to get awhole new wardrobe and everything changed” (par-ticipant 7, total gastrectomy, 2 years ago).

With the realization that eating and weight will not returnto the pre-operative state, comes a sadness for what life usedto be. Participants grieved for how much they could eat andthe types of foods they could eat. They grieved for a sociallife they once had and a physical body and the energy theyhad when their weight was higher.

Carer, professional and peer support

Participants talked openly about the importance of the carerin helping them cope with dietary changes. Family memberswere pivotal in encouraging them to eat and reminding themto eat when they have no appetite, in regulating how muchthey should eat and in tolerating unpleasant symptoms:

“My son who lives with me, he's been with me rightthrough every inch of the way. He never gets off myback about making sure I put the weight back on”(participant 22, oesophagectomy, 6 months ago).

Unfortunately some participants are confronted with fam-ily, health professionals and strangers blaming them for theirlack of progress in gaining weight. One participant told ofbeing labeled as having anorexia nervosa by her generalpractitioner and being sent to a psychiatrist for assessment.Lack of information from health professionals also meant

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that participants were left with unanswered questions aftertheir surgery:

“Another thing that upsets me a bit to is, I used to like aglass of wine and I'm not sure if I'm allowed to anymore.I used to like going out Saturday with the girls andhaving a couple of wines, not a lot but you know oncea week or fortnight. I haven't been doing that at all causeI didn't know I could drink alcohol again” (participant22, oesophagectomy, 6 months ago).

There also appeared to be a lack of or mis-informationaround treating symptoms. Simple strategies such as in-creasing the dosage of proton-pump-inhibitors to treat re-flux, or the addition of pancreatic enzyme replacementtherapy to manage malabsorptive symptoms appeared tobe overlooked. Of the eight participants having had pancre-atic surgery, seven showed signs of malabsorptive symptoms,and all had received mis-information around pancreatic en-zyme replacement therapy, including incorrect dosing andtiming of pancreatic enzyme replacement therapy. All patientsusing this therapy reported dosing and timing of their medi-cations that were inconsistent with current guidelines.

The majority of participants did not have access to peersupport, the importance of which can be seen by oneparticipant's comment:

“I’m getting really frustrated with the doctors because itdoesn't seem to be widely known that this is a normalthing. I feel isolated, I need to talk to other people. I don'tknow any other people who have had this sort of surgery.So I can't sort of talk to them about tactics they've used,what works for them. Sometimes the feedback, theymight just know something that you haven't thoughtof” (participant 4, oesophagectomy, 3 years ago).

Resignation

It is not true to say that this group of participants have‘adjusted’ to living with the above consequences of surgery,as this would imply that people have adapted so as tomaintain some balance in their life. While people wereforced to make changes, balance was rarely achieved. Andwhile there is an ongoing struggle between food, symptomsand the issue of control, there is a strong degree of resigna-tion that this is the way life is now.

“I lost 10 to 12 kilos. I feel bad [about the weight loss]but I got my stomach cut up and I think this is my lifenow” (participant 12, partial gastrectomy, 9 months ago).

Like other people suffering from chronic illness, par-ticipants have adjusted their quality of life to take intoaccount their altered physical, emotional and social con-dition after surgery.

Discussion

To the outsider, and possibly the medical team, the long-term survivor of major upper gastrointestinal cancer surgerymay be seen to be doing well, and assessed as ‘cured’.However, this qualitative insight indicates that this groupof survivors is on an ongoing journey struggling with symp-toms associated with eating and endure ongoing physical,emotional and social consequences. They are confrontedwith the need to have great control around food and eating,resulting in a sense of grieving and resignation.

While previous qualitative research focusing on the ini-tial months after surgery indicated that the struggle aroundeating and associated symptoms would subside as peoplelearned to eat again [10], this study indicates that peoplenever fully adjust to the change in dietary practice that isrequired. People struggle on a daily basis with the impact ofan altered anatomy and subsequent change in eating, evenyears after surgery.

Findings from this study show that people are struggling tocope with the physical symptoms and changes in eating that arerequired following surgery. There are several current models ofcoping, with Lazarus and Folkman [26] emphasising that cop-ing is a process rather than a single event. In general, copingreactions to adverse circumstances may take the form of alter-ing behaviour to reduce or avoid the effect of the stressor;altering thinking about the stressor (using denial, for example,or setting a new baseline for expectations); or altering theemotional reaction to the stressor (such as by using relaxationexercises, humour, or meditation/prayer). Such responses maybe helpful to the well-being of the patient (adaptive), or under-mine the well-being of the patient (maladaptive). This classifi-cation may vary according to the situation and timing. Forexample in the short term, denial—pretending the stress is notoccurring—may be very effective/adaptive in allowing some-one to get on with things, but in the longer term, it is maladap-tive as it prevents them from implementing more constructivestrategies to deal with their situation [27]. The expectation thatsymptoms will subside might be leading patients to adoptcoping strategies that, while effective in the short term, areactually unhelpful in the longer term.

Participants in this study demonstrated all of the aspectsof coping, in both adaptive and maladaptive forms. Forexample, all participants reported behavioural strategiessuch as adjusting their eating habits to minimise gastroin-testinal symptoms and improve nutrition; but many alsoreported that the fear of symptoms led them to make mal-adaptive changes such as avoiding social situations thatwould otherwise be enjoyable and allow them to connectwith family and friends. Cognitive and emotional copingstrategies included seeking support from carers and clini-cians, adopting an attitude of resignation and adjusting theirquality of life expectations; but also maladaptive responses

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such as anxiety and depression, and avoidance of dailysocial activities was common.

Our findings suggest that anxiety and depression may bean issue for patients following major upper gastrointestinalsurgery. Continuing gastrointestinal symptoms perpetuate asituation of constant struggle as well as a growing sense ofgrief at the loss of patients' previous lifestyle; this responseis maladaptive in that the grief and sadness may make itharder to deal with the symptoms and prompt the patient towithdraw from potential sources of support and enjoyment,such as social events. However, there is limited researchexamining the level of anxiety and depression experiencedby this patient group. Research into other gastrointestinalillnesses has highlighted increasing levels of anxiety withworsening gastrointestinal symptoms [28, 29]. Spiegel et al.[30] describe the cognitions of someone experiencing chronicgastrointestinal symptoms leading to catastrophising, antici-patory concerns and embarrassment. Anxiety levels appearworse when symptoms are unexplained or undiagnosed.Future research assessing anxiety and depression within thispopulation would give better insight into the impact of gas-trointestinal symptoms on psychological well-being and thepotential need to screen and treat anxiety and depression inthese patients.

In order to support patients' well-being in the longer term,it may be helpful to relate their situation to a chronic illnessrather than a temporary predicament. Chronic illness suf-ferers mourn for their past body and capabilities; must learnto cope with changes in bodily appearance; and alter every-day and life goals in response to their reduced capabilities[31]. People having had major upper gastrointestinal surgeryreported similar experiences in this study. Redefining thispost-surgical situation as a chronic illness may help topromote more appropriate coping strategies amongst pa-tients that ultimately improve their well-being as well asindicating that service development models should thereforealso follow a chronic illness approach to management andfollow-up [32]. This would mean acknowledgement of on-going struggles and improved long-term support.

It appears that there have been no other studies exploringdifferences in patient experience between different types ofupper gastrointestinal surgery. In particular, physical symptomsand social problems differ markedly between those having hadpancreatic resection compared to other upper gastrointestinalsurgeries. After pancreatic resection, malabsorptive symptomssuch as diarrhoea and flatulence are more common, whereasupper gastrointestinal symptoms such as nausea and vomitingwere reported mainly after oesophagectomy and gastrectomysurgery. However, these differences in symptoms did notchange the degree of anxiety and distress experienced bypatients attempting to fit back into their social and culturalworld. As social activities often revolve around food, thesedifficulties with eating create great apprehension for this

group. Sadly, people often opted out of social activities ratherthan risk the embarrassment of public vomiting, flatulence orsudden diarrhoea.

Weight loss was seen as both a positive and negativeexperience for participants in this study. For those peoplewho were well-nourished, weight loss was seen as advanta-geous; but for those who showed some sign of malnutrition,weight loss was a negative consequence of the surgery. Thedegree of weight loss experienced highlights the importanceof both pre-operative nutrition support and also post-operative nutrition support continuing long after surgery.The long-term consequences of malnutrition are well docu-mented and include nutrient deficiencies such as bone min-eral disease [33], lower tolerance of medical treatmentsshould they be required [34], and poorer quality of life [8].

With so many people reporting weight loss and symptoms,family and friends appear vital in providing emotional supportand assistance in managing physical symptoms. This findingconcurs with previous research. Carers not only have a role toplay in monitoring and managing weight and food issues, butalso play a much greater role in shielding their loved onethrough difficult social and emotional situations [18].

Of concern is the lack of support and mis-informationpeople receive from health professionals. There is a lack ofnational and international evidence-based guidelines in thelong term management of people having had major uppergastrointestinal surgery. Our findings support the need for awider adoption of clinical guidelines for long term manage-ment of this patient group. The Scottish IntercollegiateGuidelines Network [35] is the only organization that hasproduced recommendations for the long term care of thispatient group. They recommend that assessment of nutri-tional status and management of nutritional problems is anessential part of the multidisciplinary follow-up process.More intense follow-up is recommended initially to providesupport in the re-introduction of oral intake; and to addressissues around reduced oral intake and weight loss. Morelong term follow-up can detect complications such as dump-ing and malabsorption syndromes, vitamin, mineral andenzyme deficiency, reflux and hyperglycaemia [36, 37].

There is a lack of health professional support for thispatient group. The use of clinical support nurses is uncom-mon and dietetic follow-up is scarce [38]. Hence, this pa-tient group is often left with minimal support from healthprofessionals, and is left to live with gastrointestinal symp-toms, anxiety and subsequent weight loss that could bebetter managed. As with previous research [18], this studyhighlights the important role clinical support nurses anddietitians could play in supporting such patients (and theircarers). A clinical support nurse ensures that patients are notlost within the medical system and always have a point ofcontact for support, empathy and referral on to specialistservices. The dietitian is in a unique position to provide

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counseling to minimize gastrointestinal symptoms and im-prove nutritional status.

Our findings also suggest that peer support groups wouldbe a useful form of additional emotional and practical sup-port for this patient group as they learn to adjust to life aftercancer surgery. Support groups (health profession led andpeer support) in oncology populations have demonstrated tobe a valuable source of information sharing [39, 40]. Futureservice development should consider the above supportstrategies and examine their effectiveness in improving bothpatient outcomes and quality of life.

This study has some limitations. It is based on the expe-riences of 26 people (majority male) having had major uppergastrointestinal surgery at three hospitals in Sydney, Australia.However, it is one of few studies to provide insights into theexperiences of patients having undergone different types ofupper gastrointestinal surgeries, raising many issues worthy offurther consideration and research.

The current study has focused exclusively on food andeating in people having had different types of major uppergastrointestinal cancer surgery. Physical symptoms and so-cial anxieties differ between surgeries. Coping strategies areadopted to manage this, but in some instances, these strate-gies can be maladaptive, preventing longer-term adjustment.People still struggle with issues around food and nutritionyears after surgery, highlighting the impact of anatomicalchanges associated with such surgery. Health professionalsneed to be more vigilant for symptoms after major uppergastrointestinal cancer surgery because patients themselvesare resigned to these symptoms and unlikely to complain.Many of the challenges this group face could be addressedwith an improved health service model of care.

Acknowledgements We would like to thank Janet Conti for herconsultation and insight into qualitative research methods.

Declaration of conflicting interests The authors declared no poten-tial conflicts of interest with respect to the research, authorship and/orpublication of this article.

Funding The authors received no financial support for the research,authorship, and/or publication of this article.

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