P1: SFK/UKS P2: SFK c07 BLBK332-Shaw September 9, 2010 15:32 Trim: 244mm�2mm 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 P1: SFK/UKS P2: SFK c07 BLBK332-Shaw 122 September 9, 2010 15:32 Trim: 244mm�2mm 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 P1: SFK/UKS P2: SFK c07 BLBK332-Shaw September 9, 2010 15:32 Trim: 244mm�2mm 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). P1: SFK/UKS P2: SFK c07 BLBK332-Shaw 124 September 9, 2010 15:32 Trim: 244mm�2mm 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 P1: SFK/UKS P2: SFK c07 BLBK332-Shaw September 9, 2010 15:32 Trim: 244mm�2mm 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 P1: SFK/UKS P2: SFK c07 BLBK332-Shaw 126 September 9, 2010 15:32 Trim: 244mm�2mm 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 P1: SFK/UKS P2: SFK c07 BLBK332-Shaw September 9, 2010 15:32 Trim: 244mm�2mm 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). 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