EATING AND NUTRITION
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
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.
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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.
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).
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
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
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)
Medication only 2
Medication and gastric stimulation 7
Modified oral diet 4
Jejunal feeding 5
Full time work 1
Part time work 1
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
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
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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).
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
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
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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.
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.
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
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
© 2013 John Wiley & Sons Ltd 2818 Journal of Clinical Nursing, 22, 2812–2821
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
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-
© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 22, 2812–2821 2819
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
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
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.
Colette Durcan transcribed the taped interviews.
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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