Eating and nutrition

EATING AND NUTRITION

A loss of social eating: the experience of individuals living with

gastroparesis

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Jose Bennell and Claire Taylor

Aims and objectives. To report the experience of patients living with gastroparesis.

Background. The complex illness of gastroparesis is a condition of delayed gastric emptying associated with a range of

different symptoms, including nausea, vomiting and depression, resulting in altered eating patterns. Patients are often over-

investigated, treatments are not always successful, and quality of life is often impaired.

Design. A descriptive phenomenology study was undertaken to examine the experience of living with gastroparesis. Nine

gastroparesis patients gave in-depth interviews. The interviews were transcribed, and framework analysis methods applied.

Methods. A descriptive phenomenology study was undertaken. Nine gastroparesis patients gave in-depth interviews. The

interviews were transcribed, and framework analysis methods applied.

Results. Four main themes emerged: the first described their experiences and opinions of medical professionals, the second

their understanding of mental health and mental illness, the third how they managed social settings and the fourth their

identity and security. Their behaviour around food and mealtimes was often associated with feelings of loss, isolation and

rejection, which influenced their reported quality of life. These factors resulted in their personal struggle to understand how

this chronic, stigmatising illness affects their identity and their need for security.

Conclusions. The complex illness of gastroparesis affects every aspect of patients’ lives. As treatments for gastroparesis con-

tinue to evolve, therapies to help these patients address the psychological impact and the feelings of loss they report must

not be overlooked.

Relevance to clinical practice. A better understanding of these patients’ sense of loss of normal eating behaviour and the

associated psychological distress needs to inform gastroparesis service provision with a view to developing a more holistic

service for this patient group.

Key words: chronic illness, eating, gastroparesis, psychological distress, symptom experience

Accepted for publication: 6 November 2012

Introduction

Gastroparesis is a condition of delayed gastric emptying in the

absence of any mechanical obstruction (Abell et al. 2006).

There are no data on the number of gastroparesis patients in

the UK; however, the prevalence of gastroparesis in USA has

been estimated at 0�01% for men and 0�04% for women (Jung et al. 2009), with a mean age for onset of 33�7 years (range, 15–72) (Soykan et al. 1998). The American Gastroenterology

Association report an increase of 138% over 10 years in the

number of patients being diagnosed and hospitalised with

gastroparesis (Parkman et al. 2004) and highlight these

patients undergo more investigations than other gastroenter-

ology patients and have longer hospital admissions (Wang

et al. 2008).

The condition results in retention of food and fluids in the

stomach, causing nausea, bloating, abdominal distension,

vomiting, early satiety and pain, which can dramatically

Authors: Jose Bennell, RGN, MSc, Clinical Nurse Specialist in

Nutrition Support, Royal Free Hampstead, NHS Trust, London;

Claire Taylor, PhD, MSc, PGCAP, Lecturer in GI Nursing,

Florence Nightingale School of Nursing and Midwifery, King’s Col-

lege London, The Burdett Institute of Gastrointestinal Nursing, St

Mark’s Hospital, Harrow, Middlesex, UK

Correspondence: Jose Bennell, Clinical Nurse Specialist in Nutri-

tion Support, Royal Free Hampstead NHS Trust, Pond Street,

NW3 2QG London, UK. Telephone: +44 (0)20 7830 2612.

E-mail: jose.bennell@nhs.net

affect quality of life (Hoogerwerf et al. 1999, American Gas-

troenterological Association 2004). Forty-two per cent of

these patients are unable to maintain their nutrition orally

and will require supplementary feeding: jejunal tube feeding

(15%) initially and parenteral nutrition (27% of the jejunal

group) if the former is not tolerated (Abell et al. 2003). It is

generally accepted that patients who have gastroparesis will

suffer from a range of other symptoms that cannot be fully

explained by their diagnosis (Keld et al. 2011). There is an

association between psychological dysfunction and symptom

severity but not between aetiology and degree of gastric

retention (Hasler et al. 2010).

The aetiology is multifactorial, and the main categories

are idiopathic (35�6%), diabetic (29%) and postgastric sur- gery (13%) (Soykan et al. 1998). Treatments aim to correct

the underlying aetiology as far as possible and improve gas-

tric emptying (e.g. prokinetics), as well as managing associ-

ated symptoms (e.g. antiemetics, proton pump inhibitors

and analgesia). They have frequent hospital admissions and

often undergo surgery (Kuo et al. 2007).

These patients are referred to one of the seven specialist

centres across England and Scotland (Medtronic Ltd, pers.

comm.). No nationally agreed diagnosis and treatment

pathways exist, and care is currently delivered by either a

gastroenterologist who manages medical interventions or a

surgeon who can place a gastric stimulator.

The lack of consensus in care across the UK has resulted

in uncoordinated, ineffective care pathways, and as a conse-

quence, patients report feeling abandoned (Gregory 2012,

Looney 2012). This results in health-seeking behaviours,

inappropriate use of healthcare resource and possibly

adverse health outcomes for the patients.

Background

A literature search using the search terms gastroparesis,

stomach paresis, gastric stasis and psych* did not find any

qualitative or phenomenology papers. There were four arti-

cles that investigated psychological illness and the link with

altered gastrointestinal (GI) motility. A study of patients

with major depressive diseases found a significantly

increased incidence of tachygastria, arrhythmia, decreased

slow wave activity and increased gastric symptoms

(Ruhland et al. 2008). The link between affect and GI motil-

ity was also found by Bielefeldt et al. (2009) who found sig-

nificant correlation between symptom scores and depression

(n = 55), and these scores determined disease severity better

than gastric emptying. The third study identified aimed to

determine the demographic and psychological predictors for

functional gastrointestinal disorders (Bennett et al. 2000).

They took four psychometric measures (emotional distress/

mood state, personality, coping style, emotional suppres-

sion) and demographic details to compare against GI transit

time. Depression, hypochondrasis and anger suppression

scores were higher in group with delayed transit in two or

more GI regions. These studies make a strong case for the

psychological influences of gastroparesis.

The fourth and final study of relevance was a longitudi-

nal study to evaluate the psychological adjustment of idio-

pathic gastroparesis patients receiving gastric electric

stimulation therapy as compared to diabetic and postsurgi-

cal groups (Parenteau et al. 2006). Gastroparesis patients

rated themselves as having a significantly greater degree of

hope and less anxiety at 6-month follow-up compared with

diabetic patients, and the postsurgical patients had more

anxiety than the idiopathic patients. They concluded that

hope played a role in the psychological adjustment of

patients receiving gastric electric stimulation.

The numerous studies that have investigated effectiveness

of treatments are reviewed by Hejazi and McCallum

(2009), who found that many patients did not respond to

medical management and nutrition support options did not

always significantly improve quality of life. Fifty per cent

of patients who have had gastric electric stimulators placed

reported no clinical improvement (Maranki et al. 2008). If

gut-directed treatments are proving ineffective, then a bio-

psychosocial construct needs to be used (Madhusudan &

Drossman 2010). Whilst it is imperative to develop evi-

dence to further evaluate these treatments, research exam-

ining patient experience whilst on treatment is equally

important. Phenomenological methods can complement

prevailing biomedical enquiries by capturing the experience

of life as it is lived by individuals with gastroparesis (Oiler

1982).

The aim of this study was to discover how patients with

gastroparesis experience their disease and what does having

the disease mean to them. A descriptive phenomenology

study to develop understanding was designed to answer

these questions.

Methods

A descriptive phenomenological methodology using qualita-

tive interviewing and thematic framework analysis was

used. Phenomenology, as used in nursing research, is con-

cerned with understanding the patients’ own perspectives

on ill health, suffering and nursing care (Oiler 1982, Jasper

1994). An interpretative approach was taken due to the

unpredictability and complexity of the phenomenon within

an individual context.

Eating and nutrition A loss of social eating

Sample

The target sample was all patients attending the gastropare-

sis clinic (n80) to represent the full range of possible cases

and support conceptual generalisation (Mays & Pope

2000). Fifteen patients were purposively sampled over a

period of 2 months. The inclusion criterion (Table 1) was

verified by the clinic consultant. Nine patients consented to

participate and were contacted by the researcher to make

an appointment for the interview. The other six patients

did not reply.

Interview guide

Each participant gave one interview conducted in a meeting

room set-up to maximise a sense of privacy and security.

Date and time was set to coincide with a clinic appoint-

ment, and interviews took place within 2 months of return-

ing the signed consent form.

The opening question was:

You have been told that you have gastroparesis. How did this

come about and what is it like for you?

Prompt questions were used by the researcher based on

the question types identified by Patton (1990, p. 346) and

provided the researcher with a broad range of enquiry to

meet the research objectives (see Table 2). The question

design was intended to access the meaning of the experi-

ence being described.

The research had an interview guide that was used intui-

tively to guide the discussion and keep it focused on the

participant. The interviewer developed rapport with each

participant, which facilitated open and frank disclosure.

The researcher allowed the participant to lead the discus-

sion whilst taking every opportunity to discuss their inter-

pretation of described events. Closed questions were not

used unless it was to clarify factual knowledge, such as

‘How old were you then?’ In this way, the participant

chose what was important to include. The researcher used

strategies to bracket her prior understanding of the phe-

nomenon by asking clarification questions such as ‘What

did you mean by …’ or ‘Tell me more about the time when

…’. Use of bracketing brought the participants’ experiences

into clearer focus and allowed the researcher to understand

what it meant to live this condition (Oiler 1982).

The recorded interview lasted from 0:42 hours long to

1:23 hours long (mean interview length being 0:59 hours).

Ethical issues

This study protocol was approved by the Local Research

Ethics Committee (REC reference number: 10/H0717/2)

and Trust Research Unit. The analysis and report identify

each participant by a number only. Identifiable symptoms

and life situations (e.g. cyclic vomiting and in full-time edu-

cation) were kept separate and not linked to sensitive clini-

cal information as far as the analysis allowed and in this

was confidentiality could be maintained.

The selected patients were sent a participant information

sheet and consent form. They were asked to return the

signed consent form if they wanted to participate. All those

who consented to be interviewed also agreed to being

recorded with a digital voice recorder (Philips Voice Tracer

LFH0622). The participants were given the opportunity to

complete a postinterview comment sheet. On its comple-

tion, the researcher ensured all participants were thanked

and the benefit of their contribution emphasised. The inter-

views were transcribed within 48 hours of the interview,

and each was coded so that they could not be identified

and kept on a password-protected computer.

Table 1 Inclusion criteria

Definitive diagnosis of gastroparesis

Receiving either medication only or medication plus gastric pacing

treatment

Over 18 years of age

Can communicate verbally in English

Can read and write English

Attending the outpatient department within 4 months.

Table 2 Examples of questions employed during the interviews

based on Patton’s (1990) question types

Questions to elicit descriptions of experiences, behaviour, actions

and activities. For example, How did your illness affect you at

first?

Opinion or value questions to inform about people’s goals,

intensions, desires and values. For example, What is your

view of the treatments you are having?

Questions about feelings to obtain an understanding of emotional

responses. For example, How do you feel when you vomit and

how does it affects your social life?

Questions about knowledge and factual information. For example,

How old were you when this happened?

Questions that determine which sensory stimuli – sight, sound,

touch, taste or smell – the respondents are sensitive to. For

example, What do you do at mealtimes when food is cooking

and you know you cannot eat?

Background questions that aim to understand the respondents’

previous experiences. For example, Has your life changed since

your diagnosis? If so, how?

(Patton 1990, p. 346) Examples authors own

J Bennell and C Taylor

Data analysis

The documented framework analysis process described by

Ritchie and Spencer (1994) was used. The steps include fa-

miliarisation with the data, thematic analysis to develop a

coding theme, indexing, charting and finally mapping and

interpretation.

All the data on each theme were collated in separate doc-

uments to make the range of data across each theme visible.

Each participant’s comments on the themes were also col-

lected in separate documents, and in this way, the range of

data across cases was also easy to identify. This made it

easy to find all comments about one topic; for example, all

descriptions of coping were in one document. And because

individual participants’ comments on all the themes were

also collated, it was easy to compare their perspective of

experiencing these symptoms and description of how they

managed them.

The researcher was interested in what position the par-

ticipants took when faced with their symptoms, not as

much in what their symptoms were. Recurring themes

emerged almost immediately; for example, all the patients

mentioned altered behaviour at mealtimes. Within this

theme, different codes were identified, one of which was

‘society’s reaction to abnormal eating behaviour’. Another

code within this theme was labelled as ‘I am different

from people who eat’. Both codes described aspects of

altered eating behaviour. Discussion with the second

author helped identify the nuances between participant

statements.

A reflexive and iterative process was used to handle

these data. This process makes the researcher’s beliefs, atti-

tudes and wishes clear so that they can be distinguished

from the participants’ experiences. It was this process that

helped uncover the reasons why the researcher was sur-

prised that the participants who had feeding tubes did not

discuss them in their interviews. They were relevant to the

researcher in her clinical role, but they did not reflect the

reality of everyday life for the participants.

All data remained connected to their index code, so their

source could easily be located so that the researcher could

regularly check the original participant statements in con-

text. In addition, a log was maintained of how each inter-

view was conducted and how decisions were made in the

data analysis and reporting stages. This was discussed with

the second author at regular intervals.

Finally, the relationships between the themes and codes

were explored using diagrams and flowcharts. This tested

and clarified relationships between concepts and typologies

and described associations between the concepts.

Results

Nine patients were recruited to the study, and their demo-

graphic and medical characteristics can be viewed in

Table 3. All the responders were patients who had been

diagnosed for more than 1 year and had been stable on

their treatment for several months. The nonresponders were

mainly those who had a recent diagnosis and/or were

undergoing new investigations and treatments. Most (7)

had idiopathic gastroparesis, one diabetic gastroparesis and

one postsurgery gastroparesis. All were receiving prokinet-

ics, and 7 had gastric electric stimulation. Five had a jejun-

ostomy tube to supplement their oral intake, and the other

4 were managing to maintain their weight with a modified

oral diet. Most (7) were in the 31–40 age range, eight

were female, six were married, and 7 did not have paid

employment.

Four themes were identified as they discussed their experi-

ences before diagnosis, which linked to their understanding

of mental health concerns. They described social settings

involving food and the challenges of managing the risk of

vomiting in public, which led to feelings of insecurity and

strategies to cope with their changing identity (Table 4).

Table 3 Sample demographics and characteristics

Sample (n = 9)

Aetiology

Diabetic 1

Idiopathic 7

Other 1

Treatment

Medication only 2

Medication and gastric stimulation 7

Nutrition

Modified oral diet 4

Jejunal feeding 5

Age

21–30 1

31–40 6

41–50 2

Sex

Male 1

Female 8

Marital status

Single 2

Married 6

Divorced 1

Employment status

Full time work 1

Part time work 1

Unemployed 6

Long term sick leave 1

Eating and nutrition A loss of social eating

Theme one: experiences and opinion of medical

profession

There were some positive reports of doctors they had

encountered. ‘She was really nice but she got to the point

where she did not know what to do with me’ (P4). ‘My

consultant was brilliant but there was no more that she

could really do’ (P5). What they valued was their empathy,

understanding and patience. ‘Somebody who actually don’t

just give you lip service, but actually shows I’ve done some-

thing about this, I’ve looked into it myself, sort of thing, to

try and help. And I think that makes a big difference to me

… to have someone there who I know I can go to’ (P5).

Assessing the medical profession by their attitude rather

than by their skill has been noted elsewhere (Shaw et al.

2007).

This contrasted with accounts of doctors who responded

in negative ways:

Awful. It is so embarrassing because people don’t know that there’s

anything wrong with you… I don’t actually think that people can

comprehend what gastroparesis is… shortly after I was diagnosed a

couple of years ago, eemm, I was being really, really sick and my GP

in the end actually sent me with a letter to our local casualty depart-

ment and I actually argued with the nurse, in, no … with the doctor

in casualty because she told me there was no such illness. (P6)

The anxiety this caused was described graphically as

follows:

It’s like being in a sink full of water and you take the plug out and

the water is going round and round … I was at that point and I

was about to go in that plug hole, fighting and swimming. (P8)

Theme two: understanding of mental health/illness

They described confusing and conflicting ideas and described

mental and physical health as completely separate: ‘Am I

really ill or is it in my head?’ (P1), and having a mental

cause for the symptoms means you are ‘somebody making a

stupid choice’ (P7). They felt accused of fabrication if no

physical causes were found: ‘It’s not in my head, I’m not

lying’ (P2). ‘It’s not something I’ve brought on myself to be

ill’ (P9). There was a sense that mental illness was something

that patients did to themselves, but gastroparesis was some-

thing that you had no control over. ‘[Bulimics are] making

themselves retch where mine was just coming up’ (P5). This

belief seemed to be shared by relatives who ask ‘why are

you doing that to yourself?’ (P7) when they vomit. The par-

ticipants interpreted the doctors’ behaviour as suggesting

that if a physical cause for the symptoms could not be

found, then the source of the symptoms was not physical

but mental, and this meant it was in their heads and under

their control. These confusing messages from doctors,

friends and family caused much anxiety.

Theme three: managing social settings

All the participants shared experiences that revolved around

food and meals with family or friends. There was a feeling

of loss and sadness as they thought about the things they

missed: ‘Am I going to be able to walk down the street eat-

ing?’ (P1) There were descriptions of favourite meals, steak

with all the trimmings and roast dinners. But they also

accepted they might never ‘get back the ability back to eat

as I was’ (P3) and acknowledged that even though ‘Star-

bucks was a big part of my life’ (P8), it was now gone and

the social contact it represented went with it. The abnor-

mality of participant 8’s situation was highlighted by the

admission that she had stopped watching cookery pro-

grammes. But still, it was ‘very difficult … it’s not normal,

you know?’ (P8).

One participant describes how her family were uncom-

fortable when she does not eat or when she does eat and

then vomits. So she chooses not to socialise for their sake:

When it comes to eating out, no. I just couldn’t. I think that that in

itself sometimes is a nightmare because you want to go out and it’s

like, friends birthdays and that, … because we were quite close with

the neighbours and we used to go out. But I just won’t now. I think

it’s when I eat at home and I want to be sick, I know I am in a safe

environment. I’ve got somewhere to run to quite quickly, but

But I think it’s the thought when you are out, cause like, [sucks

breath in through her teeth] Ooh, I could vomit any time. (P4)

Table 4 Main themes

Theme one: experiences and opinion of medical profession

(before diagnosis)

Lack of trust in medical profession

Positive experiences with doctors

The effect of not having a diagnosis

The search for answers

Theme two: understanding of mental health/illness

Participants’ opinion of mental health/illness

Medical professionals’ opinion of mental illness

Theme three: managing social settings

I am different from people who eat

Society’s reaction to abnormal eating behaviour

Avoid or participate – what do I do now?

Theme four: identity and security

Opinion and effect of having this disease

Who I am in relation to others who have this disease?

My life plans

My future

J Bennell and C Taylor

She eats only when she is alone because there is no risk

of disclosure. This makes it sound as if she chooses not to

socialise because society does not like it, but she has had

opportunities to join in whilst on holiday but found that ‘It

was hard to watch everyone else eat’ (P4). Now it is her

discomfort in social settings that is determining her behav-

iour.

The reactions of people around them were divided

between people who understand and accept their abnormal

behaviour and those who did not. They were able to

describe times when they could relax and be themselves in

a social setting: ‘they are sitting there with a meal … quite

happy … don’t comment’ (P7). But it was more common

for them to talk about the difficulties they encountered: the

family member who asks ‘What are you ordering?’ (P3) so

that she can monitor your intake, the mother who says,

‘You’re crazy!’ (P) when you eat a biscuit and risk vomit-

ing, verbal challenges from waiters in restaurants about

why you are not ordering, which leaves you with ‘shaking

and sweaty hands’. (P5)

Study participants’ abnormal eating patterns affected all

their aspects, including any and all of the following: percep-

tions – ‘Social life is centered around meals’ (P7); memories

– ‘Now everything tastes so different’ (P5); emotions – ‘and

they were just eating a banana. I completely just go mad’

(P8); content of thoughts – ‘And there’s always this mental

anguish; what do I eat?’ (P9).

Several struggled with food cravings and a fundamental

need to eat and ‘physically having to chew something’ (P4).

Eating had meaning for them, and this was at times more

important than avoiding symptoms. ‘It’s like having

smoothies. Oh, I can taste smoothies! I keep it down. As

soon as I did that I was on the phone and saying, I’ve

taken a smoothie down! And my mum and they are all

going ‘yea! Well done!’ [laugh]’ P6. They remained hyper-

vigilant about their food intake and its effects. As a result,

they found socialising a burden especially when focused

around food. Most socialising does revolve around food,

but participants strove to find events (like sewing classes)

that did not involve food.

The way the participants coped with these stresses was

varied, but they all described some actions they took to

make life tolerable. They had to accept that they had a

problem: there was no point in pretending everything was

ok. ‘Now saying all of that doesn’t mean you necessarily

immediately accept it. It takes a long time to assimilate that

and accept it and find other outlets, if you like, for your

intellectual creativity, all of those things that we all need as

people’ (P7). Once they had accepted their limitations, they

were able to move on: ‘It makes you feel more a part of

life. If you’re in with a chance of doing something and

keeping yourself positive, for me it’s having goals. I will go

out on my bike, I will go and do this, or go and do that.

And even when I’m sick I will say to myself, my goal is to

get out of bed and sit downstairs. To every day person that

may not seem much, but when you feel really ill and feel

absolutely awful, to manage to get out of bed and sit down

stairs, even if you are still being sick, is quite a big thing. It

just proves that I can do it’ (P9).

They put much thought and effort into managing short-

term control of symptoms usually by being overly prepared.

One participant always carried plastic bags to vomit in;

several timed their food intake very carefully so as not to

risk vomiting in awkward places; one participant lobbied

her boss for just the right desk at work so that she could

vomit unobserved. They also compared themselves with

others who were more unfortunate; ‘I could be a lot worse

off … I haven’t got cancer’ (P5).

They were resourceful and creative, and they deliberately

chose ways to stay involved and busy because if they did

not, they risked depression: ‘So you could completely fall

into what is happening and you could go down like to, I

don’t know, I call it the depression route. So, you know,

you are very like, you are very like … engrossed in like

what’s happening, like the illnesses, they sort of eat you

up?’ (P8). This ability to cope with was repeatedly

described as starting when they accepted: ‘I know things

aren’t as they should be. And that has taken me long to

accept. That was a real turning point for me this time to

understand that it is not working, you’ve got to accept it,

you’re going to have to get on with it. So it’s, that’s a big

thing (P3).

Theme four: identity and security

They struggled as they compared themselves against soci-

ety’s idea of normal or their prediagnosis abilities: desiring

to be the ‘all singing all dancing, wonder mum you always

aspired to be’ (P7). All the participants measured their ill-

ness in relation to what they were or were not able to do:

‘I just want to be someone that is fit and healthy and is not

constrained by an illness or a disability, who can actually

do what they want to do’ (P9), ‘I can’t do the things nor-

mal people do, so I feel ill’ (P2). But they varied in how

they related to the illness. Some described themselves as

being ill as if the illness was a part of them, and they

judged how people related to them based on this:

They look after me because they (friends) know I’m ill … so I sit

down and they look after me. My friend looks after me, she

Eating and nutrition A loss of social eating

controls my health and all my tablets, everything for me … she

does everything for me really … my cleaning, she used to bathe me

and she used to remind me to eat. (P2)

Others felt very strongly that they were not the illness.

They avoided activities that focused on their illness and

deliberately engaged in normal activities that affirm their

sense of self, otherwise ‘you are just the illness’ (P7). Some

‘learnt to put on this public face’ (P7). They did not want

to be identified with the illness and wanted to ‘fool’ others

and even themselves into thinking they were OK: ‘You

almost overcompensate in terms of what you will do in a

day because I’m not going to be defeated by this’ (P7). Oth-

ers in this study sought social acceptance and yet at the

same time needed the people around them to acknowledge

their symptoms and remember that they had an illness.

Whichever way they played it, they had to cope with not

only their symptoms and the possible consequences of eat-

ing but also the stigmatising effects of this condition.

Study limitations

All the patients who consented to participate had been

diagnosed for more than a year and had been stable in their

treatment for a while. The nonresponders were in a stage

of transition, and it was theorised that they opted out of

participating because they felt unable to describe or discuss

something that was very new in their experience. It may be

a period of stability and time to reflect that enabled the

responders to put their experiences into words. It is not

clear how this potential bias influenced the data. Each par-

ticipant gave only one interview, so experiences over time

are not captured.

This sample was a heterogenous group of participants.

The sample size was small (9) but adequate for this type of

qualitative research question. The rich data produced

revealed strong similarities between participants and the

same themes, and phenomena kept recurring.

The researcher was able to establish rapport with the par-

ticipants as indicated by open and frank disclosures. This

was in part due to prior knowledge and contact with the par-

ticipants. This could also have influenced the interviews neg-

atively, and the researcher was challenged to separate her

nursing role (concern about a participant’s low blood sugars)

from her researcher role. One participant seemed to be reluc-

tant to criticise the service and backtracked from what could

have been a critical statement. It was not possible to get this

participant to disclose their concerns, but the realisation that

an independent interviewed might have received different

data must be accepted.

Discussion

Living with gastroparesis led to loss of social eating, which

precipitated much individual distress and disrupted many

social activities. What we consume, how we acquire it, who

prepares it and who is at the table are forms of communi-

cation that is rich with meaning. Beyond merely providing

nutrition for the body, what we eat and who we eat with

can create and strengthen the bonds between individuals

and communities. These participants’ descriptions illustrate

how food plays a large part in defining family roles, rules

and traditions (Warde & Martens 2000). By choosing to

join in social occasions involving eating, they may have

gained pleasure from being with others, and yet, they were

set apart from them by not eating with them and/or by oth-

ers’ difficulty in accepting their unusual eating habits. The

participants in this study clearly valued social interaction at

mealtimes but, because of these challenges, thought care-

fully about whether to participate or not in these important

events.

Winkler et al. (2010) studied the meaning of food for

patients on home parenteral nutrition (HPN), and compari-

sons can be made. The HPN patients also had no specific

patterns of food restriction, and whilst the adverse effects

on gastrointestinal symptoms were different in nature, they

were similarly varied and individual. To manage this, both

groups controlled their portion size: they all ate smaller

portions than usual. They had a choice to make every time

food or drinks were offered, which went far beyond just a

preference. The consequences of making choices in stigma-

tising situations have been well described in the work by

Joachim and Acorn (2000).

The HPN patients got great satisfaction from eating, and

this outweighed the need to restrict food intake. The gastro-

paresis patients also described satisfaction when eating and

that at times, they chose to eat in spite of the symptoms

that would occur, but strove to do this in private or around

people who demonstrated acceptance and understanding of

their situation. There was great fear that if they ate, they

might vomit, but if they avoided eating to avoid vomiting,

this was also seen as unnatural and stigmatising. As a

result, both groups found socialising a burden especially

when focused around food.

The gastroparesis patients in this study described a vari-

ety of coping strategies, including minimising the impor-

tance of the events they were living through by playing

down its impact and comparing themselves with other peo-

ple who were in worse situations, thereby reassuring them-

selves that things could be worse. Those who strove to

maintain a part of their normal lives linked this very

J Bennell and C Taylor

strongly to their sense of identity and worth. They found it

difficult to accept the type of person they would be if they

gave in to the symptoms. They expended much energy on

avoiding action.

However, there were a couple of participants who had

given in to the difficulties their symptoms presented when

eating in public and had withdrawn from socialising.

They were resigned to their situation and felt they had

no control and influence over their symptoms. This

response was noted in a study by Larsson et al. (2007)

who undertook a qualitative study with patients diag-

nosed with head and neck cancer. Their sample also

report the challenges of eating and the psychological con-

sequences of not knowing from 1 day to the next what

food they might manage to get down and keep down.

Gastroparesis patients (Bielefeldt et al. 2009) describe

how their altered eating adversely affects their daily rou-

tines, their professional obligations around food and drink-

ing, dining out with friends and many other regular

reminders of how the disease had robbed them of these

pleasures. Healthcare professionals often give simplistic

answers about nutritional content of foods without

acknowledging the true impact on the patient. In this study,

the participants also reported a lack of knowledge and

understanding amongst healthcare professionals, and very

few stopped to ask about the impact of the symptoms on

their quality of life.

They had a choice to make every time food or drinks

were offered. They felt pressure from those around them

to conform to normal eating and drinking behaviour.

They balanced this against the knowledge that they might

vomit. How participants behave in those situations

depends on whether they valued inclusion and integration

and suppressed their desire to eat or whether eating and

meeting their own needs to behave as others took prece-

dence. Either decision could result in unwanted attention

and comment from those around them. Robinson et al.

(2011) suggest that mimicking occurs to gain social

acceptance. This may mean that these patients try to eat

more in social settings where it matters to be eating the

same as those around them so as not to feel that they

do not belong and avoid the discordant social interac-

tions reported in this study.

The participants’ loss of social eating highlighted their

need to eat on a more fundamental human level. If they

were receiving tube feeding, their nutrition requirements

were being met, but they recognised another need to eat.

They described this as a craving and ‘physically having to

chew something’ (P4). Missing out on the basic human

function of eating felt artificial to them.

It is apparent from the published studies reviewed that

an illness that results in a chronic alteration of how food is

eaten has a profound impact on the sufferers’ experiences.

Establishing whether there is a social reality that can be

clearly described would make this knowledge applicable in

many care settings. There is a great opportunity to explore

the experience and meaning of eating in chronic illness.

Relevance to clinical practice

These results highlight that it is not possible to separate the

needs of the stomach from the needs of the whole person

(Maslow 1954). Study participants described how their

altered eating habits affected their perceptions of what a

social life is, their connections with others and their emo-

tions. Whilst we need to attend to their nutritional intake,

we also need to think how this is affecting them socially

and emotionally. The patient needs to know that the

healthcare professional acknowledges their struggles, and

this can be done by asking simple questions to introduce

the topic, allowing the patient time to answer and open up

and being prepared to listen. Formal assessments can also

be used to help the patient explore how affect and anxiety

influence their quality of life. Most of these complex

problems will not be fixed in one clinic appointment, but

acknowledging that they are an integral part of the gastro-

paresis experience allows them to be included in the man-

agement and treatment plans.

Any new service needs to include therapies that facilitate

holistic assessment. Helping patients develop their ideas of

self as they live with an unpredictable and chronic condi-

tion needs professional support. The patients need to be

able to clearly define who they are based on a solid founda-

tion that is not dependent on external forces. From that

secure, stable place, they can look back at who they were,

who they are now and all the skills and qualities they have

access to that they can use to develop their own sense of

self-worth, security and identity. We have little evidence to

date on how well available interventions can ameliorate

these daily struggles, but we might assume that traditional

cognitive behavioural approaches could prove helpful when

managing this illness.

Nursing is ideally placed to facilitate and support this

type of care, especially when established as an integral

part of the multidisciplinary team. The gastroenterology

service requires specialist nurses to work autonomously

and provide expert knowledge to work at the centre of a

web of services, referring to and from other providers

and coordinating between all health professionals (Ball

2005). In this way, patients’ complex and often frag-

Eating and nutrition A loss of social eating

mented care can be efficiently and effectively delivered.

These are invaluable lessons from the descriptions partici-

pants were able to share. The treatments we instigate,

such as gastric electric stimulation and jejunostomy tubes,

do have an impact on patients’ lives, but they are not

their biggest concern. Understanding how we can help

patients address these issues is a much neglected part of

gastroparesis care.

Conclusion

This complex illness affects every aspect of the patients’

lives. Their behaviour around food and mealtimes had a

detrimental effect on their reported quality of life, feelings

of isolation and rejection, heightened food cravings and

stigmatisation.

The cause of their debilitating symptoms is still to be

definitively proved, and the resultant assortment of treat-

ment options causes confusion and frustration for the

patients. More studies are required to understand the full

impact of this disease and how the psychological burden

reported relates to the symptoms. The treatments available

are developing quickly, but management strategies must

include therapies to help these patients address the psycho-

logical impact of this disease.

Acknowledgements

Colette Durcan transcribed the taped interviews.

Contributions

Study design: JB, CT; data collection and analysis: JB and

manuscript preparation: JB, CT.

Conflict of interest

The authors declare that they have no competing interests.

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