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Chapter 7
The psychosocial influences of food
choices made by cancer patients
Lucy Eldridge
Introduction
Food means many things to different people in both good and bad health. Knowing why
an individual makes the food choices they do and what that food represents can allow for
tailored dietary advice to be given (Sevenhuysen & Gross, 2003). In its broadest sense,
some describe food as nourishment for the body, having a biological purpose by providing
nutrients essential for life (Hughes & Neal, 2000). Food has symbolic meanings in human
society that are deeply embedded in social, economic or religious aspects of everyday life
(Cunningham & Bell, 2000; Poole & Froggatt, 2002), although it should be noted that
eating is normally analysed in medical rather than anthropological perspectives (Hughes &
Neal, 2000).
There is an emotional meaning attributed to food which changes through the different
life stages. As an infant, food represents security and love. As a toddler, it can be seen as
reward, punishment or as a means of manipulation. As one reaches early childhood and
adolescence, so food is used to attract attention, helping one to conform to the norms of
a particular group. In adulthood, many of the associations developed through childhood
remain, attaching security and comfort to familiar foods (Holmes, 1998).
There are many determinants of food choice with a key driver being survival; one must
eat on a daily basis in substantial amounts in order to live (Counihan, 1999), with most
using the cue of hunger as a sign to eat, but neither survival nor hunger influencing what
is chosen to eat. Religion and culture will play their role, as will an individual?s beliefs
about food, such as those who choose to be vegetarian or vegan. It is though a complex
process with no single mediating factor and will vary from the individual, family and
group in society. Table 7.1 displays the broad determinants of food choice.
Food and cancer
Food has different meanings depending on whether you are sick or healthy (PumpianMindlin, 1954). There has been limited research exploring the meaning of food to those
individuals with cancer and what determines food choice. For example, research has yet
Nutrition and Cancer, First Edition, edited by Clare Shaw
C 2011 Blackwell Publishing Ltd
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Nutrition and Cancer
Table 7.1 Determinants of food choice
?
?
?
?
?
?
?
Biological ? age, hunger, appetite, food appearance and palatability
Economic ? cost, income, access and availability
Environmental ? legislation, information about food and health
Physical ? access, location of the meal eaten, education, cooking skills and time
Social ? culture, religion, family, peers and meal patterns
Psychological ? mood, stress and guilt
Attitudes, knowledge, past experience and beliefs about food
De Castro (2002), Dibsdall et al. (2002) and Bellisle (2008).
to explore in detail whether food becomes a source of anguish or comfort, or whether it is
seen as a means of survival or as a cause of the disease. There is extensive research that
indicates that a cancer patient?s nutritional status throughout their journey can influence
the outcome. Poor nutritional status can decrease treatment response, increase the length
of hospital stay due to complications, and so in turn increase waiting time for others.
It ultimately affects quality of life and survival of the patients (McMahon et al., 1998).
Despite this being well documented, there is minimal research into the psychosocial
aspects of nutrition for the individual with cancer and their carers (McGrath, 2002).
Understanding what meaning patients place upon food would allow the dietitian to provide
more effective counselling and to shape the advice given, which itself would be related to
that patient?s particular belief system (Adams & Glanville, 2005).
There is clearly a lack of definitive information as to what one should eat following a diagnosis as the relationship between food and cancer is not clearly understood
(Beagan & Chapman, 2004). People nonetheless have to decide what to eat. Do people
change what they eat with a diagnosis of cancer, which for all is a life-altering event, and
if they do what influences this change?
Influences of food choices
Research has shown that over half of patients diagnosed with cancer will make changes
to their diets (Pinto & Trunzo, 2005). These changes include eliminating food groups
such as dairy produce, increasing consumption of fruits, vegetables and organic foods and
decreasing meat, fat, salt and sugar (Beagan & Chapman, 2004; Adams & Glanville, 2005).
Some studies suggest that although the majority of patients become more focused on food
following diagnosis, not all will change what they eat. They will be influenced by many
things when choosing what to eat and drink. These influences include their treatment, the
stage of illness as well as family and friends and the media, which increasingly includes
the internet.
Treatment phase
Research has shown that whilst patients are receiving treatment for their cancer, food is
used as a means of control, either to control the disease and/or to control the treatment
effects (McGrath, 2002; Adams & Glanville, 2005). As part of gaining control, food is
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The psychosocial influences of food choices made by cancer patients
123
perceived as increasing physical strength and healing, or as a means of survival, one must
eat to regain health. For some, eating can become ritualistic. This may help to provide a
sense of control during this very medical phase that alters the individual?s everyday world,
allowing them to play an active role in their treatment. During this time, one?s relationship
with food is complex and is perceived as an important part of the recovery process.
In Adams and Glanville?s (2005) research into what food means to women who have
had breast cancer, they spoke of food being used as a means of coping, to provide energy
and improve their feeling of well-being. Food was also perceived as providing a source
of comfort, either by physically relieving symptoms, or providing a source of enjoyment,
or in terms of social comfort provided by carers and loved ones who had prepared the
food. Using food to offset the symptoms caused by treatment can reduce the impact of
the cancer and provide a sense of control.
When the cancer and/or treatment affects one?s ability to eat and drink as normal, this
can greatly alter the relationship with food. If an individual is prevented from eating
and drinking due to side effects, this can lead to anguish. This is made worse when the
patients and their families view food as an important aspect of the treatment phase, as was
shown in McGrath?s (2002) study of haematological patients. Losing the ability to eat and
drink as normal can greatly affect quality of life and cause considerable concern. This
has been found particularly with head and neck cancer patients (Larsson et al., 2003) and
oesophageal patients (Watt & Whyte, 2003), where nutritional problems were shown to
impact on all aspects of life. This has made all the more distressing as many perceive food
as a means of survival and an important aspect of the treatment process. Some studies
suggest that this becomes increasingly difficult if the patients and families perceive that
nothing is being done by the health professionals to aid the situation (McGrath, 2002).
Similar anxiety is felt if patients and carers feel that hospital food is inadequate due to
quality or variety. Health providers would benefit from including patients when planning
catering systems to ensure their views are taken into account.
Survivorship
There is now a growing population of cancer survivors due to ongoing improvements
in health care. Research shows that nutrition can play an important role in maintaining
health, reducing the risk of other comorbid conditions such as cardiovascular disease,
diabetes and osteoporosis and may prevent recurrences, although more research is needed
(Demark-Wahnefried et al., 2005; World Cancer Research Fund, 2007). Research has
shown that a high percentage of cancer survivors want to change their diet and be told
of dietary interventions they can follow to maintain their health (Stull et al., 2007). A
cancer diagnosis presents itself as an opportune time to review one?s health behaviours.
The major reasons for changing one?s diet include hopes that the right diet will increase
general well-being, maintain health and prevent the cancer from recurring. There is also the
belief that any foods thought to cause or prevent cancer should be avoided and increased,
respectively. Many use non-scientific reasoning when deciding what dietary changes to
make, or supplements to use (Maskarinec et al., 2001). Some will make radical changes
following diagnosis, but over time diets tend to stabilise and the focus on food diminishes
(Salminen et al., 2000).
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Nutrition and Cancer
During the post-treatment phase, the meanings attached to food stem from whether
patients believe food was responsible for causing their disease (Beagan & Chapman,
2004; Adams & Glanville, 2005; Costanzo et al., 2005). Studies include individuals who
saw a poor diet or particular food as causing their cancer as well as patients who felt
that what they ate played no role. Those that see food as a cause also therefore see food
as a means of preventing a recurrence, which gives them a sense of control. Some see
no relationship, yet still change their diet for health benefits but feel they lack control
over a recurrence. Others use the experience of being diagnosed and then the subsequent
remission as a means of re-evaluating their lives and becoming more healthy, seeing food
as a means of preventing cancer but also other health conditions. Alternatively some
however blame food for their cancer but make no changes to their diet, either because
they think it is too late or because the eating patterns they held responsible were in the
past and the diet they have now is healthy (Beagan & Chapman, 2004).
Research suggests that many survivors will make a dietary change (Beagan & Chapman,
2004; Pinto & Trunzo, 2005) including those who do or do not perceive diet to have caused
their cancer (Adams & Glanville, 2005). Some research however suggests that those who
perceived diet and physical activity as potentially protective against recurrence were
shown to have greater levels of anxiety. Perhaps this resulted from a greater sense of
personal responsibility concerning their health (Costanzo et al., 2005).
Palliative care
For individuals deemed palliative, food can take on a very different meaning. It can
have both positive and negative meaning to an individual (Gallagher-Aldred, 1989). The
positive themes may include hope, by eating, one is aiding life. One can also gain comfort
from food, having enjoyable foods that remind one of happier times. For some, food can
represent joy, finding foods that taste good, and having one?s symptoms subside so that
food can be pleasurable again. However, for others food can evoke very negative feelings.
Individuals can feel guilty about not eating foods that have been prepared by loved ones.
They may even dread or fear mealtimes if food causes discomfort or pain. Some will also
use food avoidance as a means of control, refusing to eat as a means to hasten death or to
manipulate family and/or carers.
Weight loss and a decline in intake are common in the palliative stages of disease.
It correlates with quality of life ? the greater the loss, the poorer the quality of life is
perceived to be (Davidson et al., 2004). Patients and relatives may view weight loss,
especially when an individual appears visibly wasted, as an indicator of how close death
may be and how cancer is taking control of their bodies. Patients report that the loss of
weight leads both to physical and emotional loss (Hopkinson & Corner, 2006). Food or
the symptoms associated with reducing an individual?s nutritional intake can have more
meaning and cause greater anxiety to the relatives and health care professionals than to
the patient (Poole & Froggatt, 2002). It is essential for health professionals to address any
concerns regarding weight loss.
Artificial nutrition can play a valuable role in palliative care by providing relief from
hunger and maintaining nutritional status, yet it can also be seen as futile, prolonging
life with no benefit to the individual (Planas & Camilo, 2002). Therefore, when artificial
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The psychosocial influences of food choices made by cancer patients
125
nutrition is being considered, it is essential that the meaning of food and water and the
meaning of discontinuing its provision is carefully explored with each patient (Ferrell &
Coyle, 2006).
Family influence
Food and nutrition can also take on a significant meaning to the families and carers of the
patient with cancer. Families may take on food preparation as a means of being involved,
of expressing love and caring and contributing to the healing process (Poole & Froggatt,
2002; Adams & Glanville, 2005). However some families may, as a means of showing
support, try to advise what an individual should eat or which dietary approach should be
taken to improve chances of a cure (Simpson, 2003; Salminen et al., 2000).
Family members may view eating as a very hopeful sign and so as such equate an
inability to eat with despair (Holmes, 1998). For some families if their relative is not
eating or drinking, this may lead to anger or frustration, as they see nutrition as having
an important role in the treatment process (McGrath, 2002). Some family members will
resort to nagging and trying to force-feed the patient (Poole & Froggatt, 2002). Where
families or carers are very influential in what a patient is eating, it may be useful to explore
with them as to what their dietary beliefs are.
Other dietary approaches patients choose to take and
the reasons why
Following a diagnosis of cancer, many feel the need to take control of their own lives,
which can often prompt an interest in other dietary approaches, a diet different to one?s
normal diet. This can range from adopting a healthier diet to finding an altogether more
extreme approach. With today?s current mass media and access to the internet, patients and
their families can access a wide range of information from many sources concerning their
disease. Included in that information will be many different ?complementary?, ?integrative?
and ?alternative? approaches to treatment of which diet and the use of supplements is
one aspect. A complementary approach would normally be one chosen by the patient
and would be done alongside conventional treatment. An integrative approach would
be one designed as part of the conventional treatment and overseen by the treatment
centre. Whereas an alternative approach would often see an individual avoid conventional
treatment. To date however, there remains no scientific evidence to support the numerous
approaches that are currently available. However, studies suggest that those who use
complementary or alternative medicines cope better with their disease, which may be due
to it providing a sense of control (Fashing et al., 2007).
Patients resort to these types of treatment as a means of improving their quality of
life and to gain some control over the situation (Austin, 1998). The nature of what is
used varies greatly with each individual; however, research suggests that these alternative
methods of treatment may have potentially dangerous side effects and could interact with
conventional treatment (Werneke et al., 2004). For example, a recent review of published
randomised clinical trials concluded that the use of supplemental antioxidants during
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Nutrition and Cancer
chemotherapy and radiation therapy should be discouraged because of the possibility of
tumour protection and reduced survival (Lawenda et al., 2008).
It is important that health professionals identify which patients have chosen to take
complementary or alternative approaches and discuss it openly with them. Patients should
not be encouraged to continue with supplements if there is a potential they may do harm.
However, discussions need to be handled in a sensitive manner, ensuring patients feel
their needs are understood. It is important that all necessary information is obtained, and
to establish what their effects or possible interference with conventional treatment may be
(Salminen et al., 2000). It is essential that as a team, including pharmacists, information
is shared as to any new products or established interactions that are discovered. There is
a need for more research in this area.
Sourcing information
Research has shown that many patients require dietary information at various stages during
the disease trajectory, but not all know how to access this through their treatment centres,
or if they do, the centre itself may have limited resources available. This is especially
relevant in the survivorship phase when patients have less contact with their treatment
centres. In today?s society patients have a virtually unlimited source of often unregulated
information that they can access, such as the media, the internet, family and friends or
alternative practitioners (Maskarinec et al., 2001; Adams & Glanville, 2005). As a result,
patients can be misinformed as to what is the best dietary approach to follow.
Television is one of society?s main resources for circulating information and can be seen
as a useful tool in spreading messages about health. However, the media is one source of
information that patients often report to be frustrating due to mixed messages and advice
that appear to change on a regular basis; this can lead to the public not knowing what to
believe (Beagan & Chapman, 2004a). Where individuals perceive health messages to be
personally relevant, they will pay more attention and generate their own conclusions. It
will also depend on their underlying belief system as to how they interpret the messages.
The information patients are looking for includes the following:
r
r
r
r
Dietary recommendations for their individual disease
Dietary strategies to deal with the treatment side effects
A diet to achieve good health
Diets to prevent a recurrence
Research has shown that expert dietary information is considered important by patients
and their carers (Salminen et al., 2000; McGrath, 2002). The World Cancer Research Fund
(2007) has made a special recommendation that all cancer survivors receive nutritional
advice from a professional who is appropriately trained in nutrition. This ? they advise ?
is to improve quality of life, reduce the risk of recurrence and developing a new cancer,
primary or other chronic disease such as heart disease. Any advice given needs to be
creative, mindful of financial constraints and based on an awareness of an individual?s
different beliefs and food preferences (McGrath, 2002). Cancer centres need to ensure
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The psychosocial influences of food choices made by cancer patients
127
Table 7.2 Key points for the clinical setting
1. It is important to recognise that many factors will influence an individual?s
decision-making process as to what to eat
2. Patients will interpret health messages in different ways depending on their belief
systems
3. Health professionals should establish what an individual?s belief system is and their
motivating factors, and the basis behind them to ensure advice is tailored to their needs;
carers and families could be included in this depending on their level of influence
4. Providing tailored advice that can help reduce the impact of symptoms in the treatment
phase can give an individual an element of control
5. Particular attention needs to be given to those in the survivorship phase as these
patients will typically have less contact with their treatment centres
6. Health professionals need to talk to patients regarding complementary or alternative
dietary approaches, and provide advice should such approaches pose a risk.
they have evidence-based information available on dietary approaches that can safely be
used by patients both during their treatment and beyond.
In the United Kingdom ?Expert Patients Programmes? for people with long-term chronic
conditions have been reviewed as to whether it is an approach that would be suitable
for cancer patients (Wilson, 2008). The programmes are run by health professionals
and/or trained volunteers with the same condition for groups of patients. The aim of
the programmes is to take some of the pressure away from public health services by
encouraging individuals to take some responsibility for their own health needs. The
programmes aim to provide individuals with knowledge and skills about their conditions
so that resources can be better targeted. Randomised controlled trials have also shown that
these groups can lead to a reduction in the severity of symptoms, especially a significant
decrease in pain. They have also shown to improve life control and activity and feelings of
improved resourcefulness and life satisfaction (DoH, 2006). It has been shown that these
are not simply about educating patients about their condition or giving them relevant
information, they have also been shown to allow an individual to develop confidence
and motivation to use their own skills, information and professional services to take
effective control over living with a chronic condition (DoH, 2006; Wilson, 2008). Current
evidence would suggest that these could be useful to cancer patients with the appropriate
engagement of clinicians and ongoing research into the field (Wilson, 2008).
Summary
By exploring with patients what food means to them and the role they feel it should
take, and in turn by providing tailored advice, individuals can be given the opportunity
to take control. The key points for the clinical setting are summarised in Table 7.2. This
would also help to reduce the use of extreme diets, unverified and potentially harmful
supplements and diminish exaggerated hopes related to the benefits of a particular dietary
regimen (Maskarinec et al., 2001). Patients need access to evidence-based nutritional
advice throughout their cancer trajectory and need to be aware of how to access information
and advice when they need it.
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Nutrition and Cancer
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