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


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


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.


© 2013 John Wiley & Sons Ltd 2812 Journal of Clinical Nursing, 22, 2812–2821, doi: 10.1111/jocn.12196



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.


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


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.


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.

© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 22, 2812–2821 2813

Eating and nutrition A loss of social eating




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


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


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

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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


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


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.


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


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)


Diabetic 1

Idiopathic 7

Other 1


Medication only 2

Medication and gastric stimulation 7


Modified oral diet 4

Jejunal feeding 5


21–30 1

31–40 6

41–50 2


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

© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 22, 2812–2821 2815

Eating and nutrition A loss of social eating



Theme one: experiences and opinion of medical


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.


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


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

© 2013 John Wiley & Sons Ltd 2816 Journal of Clinical Nursing, 22, 2812–2821

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-


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).

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