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Title. How people with advanced cancer manage changing eating habits
Aim. This paper is a report of a study to explore the management of changing eating habits in people with advanced cancer.
Background. Internationally there is interest in supporting self-management as a way of helping people to live with illness. It is unknown if promoting self-management in people with cancer can lead to beneficial health outcomes. In order to develop and test interventions that promote self-management in cancer patients, it is first important to understand ways in which they can help themselves.
Method. A mixed-methods exploratory case study of the meaning, management and manifestations of weight loss and change in eating habits was conducted with 30 patients receiving palliative home care in England in 2003. Semi-structured interview data were analysed using both content and thematic approaches.
Findings. Participants described a total of 141 different self-actions, each of which formed a component of up to four self-action strategies that were used to aid life with advanced cancer. The strategies were ‘Taking control’, ‘Promoting self-worth’, ‘Relationship work’, and ‘Distraction’. Employing these strategies led to changes in thinking and behaviour that were motivated by a desire to sustain or enhance well-being. The pattern of self-action strategies adopted by each individual is theorized to be dependent on the personal and contextual resources available.
Conclusion. Patients can and do find their own solutions to eating problems and nurses should support this self-action. The proposed theory of self-management of eating change provides an understanding that can inform the provision of this support.
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The reasons for international interest in self-management are three-fold: political, clinical and economic. The political driver is the changing dynamic between healthcare professionals and their clients in response to consumer pressure for greater participation in decision-making (Coulter 2002). The health driver is the growing body of knowledge demonstrating the health benefits of programmes that promote self-management (Barlow et al. 2002, 2006, Lorig & Holman 2003, Wright et al. 2003). The economic driver is the anticipated cost-savings that can be made if more people adopt self-management behaviours. Healthcare policy and practice are being informed by the assumed benefits of self-management.
Whilst there is no clear consensus across the literature on what self-management is (the terms self-management, self-care and self-help are used interchangeably), the United Kingdom (UK) Department of Health (2005) has adopted the following definition:
Self care includes the actions individuals and carers take for themselves, their children and their families to stay fit and maintain good physical and mental health; meet social and psychological needs; prevent illness or accidents; care for minor ailments and long-term conditions; and maintain health and well-being after an acute illness or discharge from hospital.
The most influential work on self-management has been conducted by Lorig in the United States of America (USA) (Lorig & Holman 2003). This work has focused on the delivery of educational programmes for people with rheumatoid arthritis, led either by healthcare professionals or service users. These programmes provide information and skills training to empower people to manage their conditions. Outcomes have included improved symptom control and enhanced quality of life. The limitation of this approach to the support of self-management is the fact that the wider socio-cultural context which may influence the effectiveness of the education is not addressed through the intervention. Nevertheless, the benefits demonstrated by the programmes have generated much interest, resulting in their application to the support of people with other chronic conditions. In the UK, the Expert Patient Programme (Department of Health 2001) is based on the assumption that having an active role in managing one's own chronic condition enhances quality of life.
Cancer is an emerging chronic condition, as advances in the effectiveness of cancer treatments have led to greater numbers of people living with the disease. Little is known about how these people live with the changes and problems precipitated by their cancer. Evidence is needed of both the impact of self-management and how it can best be supported by healthcare professionals (Hubbard et al. 2006), and of people's desire to take on the risks and responsibilities of exercising personal control (Bandura 2001) through self-management. Kellehear (2001) argues that living with illness and dying with dignity at home are possible only if people are willing to take responsibility for themselves.
Changing eating habits in people with advanced cancer
People with advanced cancer often experience loss of appetite (Poole & Froggatt 2002), with at least 45% finding it a problem (Hopkinson et al. 2006). Loss of appetite is challenging for healthcare professionals to manage, and pharmacological and nutritional interventions have been found to be of limited benefit. Therefore many people are living with changing eating habits, coupled with low-expectation amongst healthcare professionals of successful palliation of the symptom (Hopkinson & Corner 2006, Hopkinson et al. 2006).
Macmillan Cancer Support UK funded an exploratory study in 2003 to discover more about people's experience of eating when living with advanced cancer. One of the study questions was ‘What is the management of weight loss and eating difficulties in people with advanced cancer?’ The purpose of the study was to map existing management of symptoms and, if appropriate, to make recommendations for how clinical practice might be changed to enhance patients’ quality of life. The study was based on the assumption that healthcare professionals held the key to improving the health and well-being of people with advanced cancer living with eating difficulties.
In this paper findings are presented from the exploratory study, conducted in 2003, relating to the management of eating difficulties experienced by people with advanced cancer. The findings challenge the underpinning assumption of the study that healthcare professionals should carry responsibility for managing changing eating habits. They provide evidence that patients can and do find their own solutions to eating problems, and that this process is important to the restoration or maintenance of their well-being. The purpose of this paper is to argue that healthcare professionals might best help patients live with eating difficulties by empowering them to find their own solutions.
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Participants described many changes in the amount and types of food they were able to eat at the time of the interview, as compared with when they first considered that they were unwell. These changes could precipitate concerns that were expressed as negative emotions, such as anger, frustration and guilt. The changes and resulting concerns are reported elsewhere (Hopkinson & Corner 2006, Hopkinson et al. 2006).
Participants’ responses to changing eating habits can be collectively labelled ‘self-management’, according to the Department of Health (2005) definition above. However, almost all responses described at interview were initiated by patients themselves. These self-initiated activities were conceptualized as a subset of self-management and labelled self-action. The 30 participants described a total of 141 self-actions, each of which was a component of up to four self-action strategies that were used to aid life with advanced cancer. The strategies were ‘taking control’, ‘promoting self-worth’, ‘relationship work’ and ‘distractions’.
Losing the desire to eat and/or the ability to eat foods enjoyed across one's life course could be experienced as a loss of control. Some patients stated that changing eating habits represented loss of control but for others this was expressed indirectly, such as reflecting that loss of appetite might be a consequence of lack of willpower. Some took action to retain a sense of control in spite of changing eating habits, for example finding a way of taking something nutritious at times when they felt hungry:
I bought myself two pounds of Brazil nuts yesterday…‘Cause it's something I can eat easily out of the bag. (Cyril)
Carers could unwittingly contribute to the sense of losing control by trying to encourage patients to eat, as explained by Emma:
I used to say to her, ‘Please don't go through it, you are making it worse.’ Because I think if somebody mentions the food, you can visualize that food. If you say ‘sausage’ to somebody, they can see a sausage – and that makes it worse for me. (Emma)
Emma had regained control by talking to her carer and persuading her to limit to just once daily her practice of reading through a list of foods.
Value was placed on eating because of its perceived importance for health and survival. Certain foods were described as ‘good’ foods, and these typically included fruit, vegetables and high-quality meat cuts; on the other hand, ‘bad’ foods were chocolate, cakes and other high-fat products. Changing eating habits made it difficult to find foods that were both tolerable and good. This could contribute to concern by generating guilt or shame about what could be eaten. Some patients had overcome negative feelings about foods that they could not eat by focusing on the value of what had been eaten:
I think today I have not eaten anything yet…Yet Sunday morning I got up and I had two scrambled eggs, six slices of bacon and I enjoyed it. And then Sunday afternoon I had proper lunch. So that's how it goes – Sunday made up for yesterday and maybe today. (Isaac)
Another way of gaining a sense of worth in spite of changing eating habits was to see the value of the change for other family members. Thelma reflected that her loss of desire to eat had led to a change in the diet of other family members and that this had been to their advantage:
At one time we were all saying that we all had too much weight on us, so, so I think they've all lost weight as well. (Thelma)
Interviewer: So, you've all lost some weight?
Yes, probably done them good! (Thelma)
Changing eating habits could generate tensions between family members. It could be frustrating for carers to prepare meals which went uneaten, leading to feelings of guilt in patients because of the waste of effort and food and the expense. Some patients worked at resolving or averting disagreements. A common action was to eat for no other reason than to please a carer. Frank described eating and enjoying the occasional snack, such as a bag of potato crisps or a few chips. He looked back over recent weeks when he had not had any desire to eat at all.
I would take soups, but I didn't enjoy anything – but I tried for the sake of my family, who were getting all stressed about it. I had no feeling of hunger at all and no appetite.
Beatrice demonstrated relationship work during the course of the interview, describing how she was teaching her husband to prepare scrambled egg. He joined in the conversation and showed that he had not been pleased with his effort and said:
I had put too much milk in. (husband)
Beatrice quickly cut in with:
You learn by your mistakes
Beatrice went on, giving an example of a mistake she had made herself many years earlier when learning to cook. Through the story she provided both encouragement but also generated a shared experience to reinforce their connectedness.
Distractions were used to generate positive emotions and circumvent thoughts about changing eating habits. Humour was a commonly used distraction. Vera explained to me that her district nurse and nurse specialist urged her to eat little and often. She joked that she could follow the first part of the advice:
I can eat little but not often. (laughing)
Reminiscing about past achievements that were seen to be related to eating was another way of shifting sadness about loss of appetite to feeling more up-beat through a celebration of the past.
Well, I mustn't really complain. I was really superman before! When I was a vegetarian I took all the fence down and rebuilt it. (Jimmy)
Jimmy goes on to tell a number of stories about his past dietary intake and physical achievements.
The purpose of the self-action strategies
The strategies formed part of a self-management process and were used either alone or in combination to manage changing eating habits. This process is perhaps best revealed through an example of how participants described moving from eating changes to effective management. However, because of the uniqueness of each individual's experience it would be possible to identify the participant from such a complete account. As an alternative, two composite stories are presented below. They illustrate possible rather than actual self-management of eating changes. The first story is about the experience of diminished food intake and the second is about change in the sorts of foods that could be eaten.
Story 1: Lily White
Lily had colorectal cancer and had been experiencing loss of desire to eat for many months:
I lost interest in eating 12 months ago. (Jimmy)
Eating had become a chore and at the time of the interview she was able to eat just a few mouthfuls of food at any meal. Her sense of smell had changed such that cooking food put her off eating.
It's just you cannot force it inside you because I know if I force it I will be sick – you don't want to see it or smell it. In fact, sometimes I go in the kitchen and it's horrible. (Flo)
She lived with her husband. They had been married for 45 years and he was devoted to caring for her. He wanted to do everything possible to prevent her suffering and believed that persuading her to eat would contribute to this goal. He spent many hours preparing dishes to try to tempt her to eat. Lily was aware of the frustration he experienced when she was unable to eat very much.
I think (my husband) gets fed up with me saying no. (Isaac)
Lily worried that her husband was getting very tired investing so much energy in trying to tempt her to eat. She also felt her son was putting pressure on her husband by telling him that he mustn't be soft and must insist that she eat. Lily decided that she should take some action because of the tensions in the family around food. She decided to do some relationship work.
You've got to make the people around you understand what your limitations are… so that they can understand what you are going through. So, if I'm sitting with a bar of chocolate, it's because I need a bar of chocolate because I need building up and I can't eat anything else. Whereas you might have a nice three-course meal, I might have a small plateful of food because that's all I could eat. So people around you should be able to understand that their needs are different from yours. (Steven) Interviewer: How have you done that? I had to sit down with (my family) and explain. (Steven)
The outcome was that Lily felt her husband had a much better understanding of the difficulties she was experiencing with eating. She talked proudly of how sensitive he was to her needs.
He never forces me. He knows. I suppose it took him a while for him to know. (Betty)
Story 2: Primrose Flower
Primrose had lung cancer:
(It was) very unnatural the last eight months, no desire to eat. (Frank)
She explained that almost anything she ate had the same taste, which she described as chewing gum flavour. Food was difficult to swallow because of its strange taste and seemingly sinewy texture.
Taste and texture, in my mouth, there is not a lot of things I can enjoy now. (Stella)
The foods she found easiest to take were those that had been liquidized and could therefore be taken through a straw. But she felt uncomfortable taking liquidized foods in the presence of other people.
Almost anti-social, even though you have to… It's not the sort of thing you want to do, really, with family or friends. (Paula)
She worried that they would see her differently, as she thought of liquidized food as food for children or the old and weak. In addition, her partner had taken over responsibility for decisions around who should be allowed to visit, which seemed to have reinforced Primrose’ ideas about liquid foods taken through a straw being unacceptable to others and symbolizing weakness.
You got no control. Basically, it's like being a kid again. (Steven)
Primrose realized her partner was trying to help by discouraging visits from her family and friends. She had spent time thinking about how he might be able to help in other ways.
I've always done the cooking, so I am trying to get him into it a bit now. (Beatrice)
She was teaching him to cook by talking him through preparing meals. Furthermore, nutrition was very important to Primrose and she had thought of ways increasing the nutritional value of what she was able to eat without increasing the amount.
I said, ‘You just put an egg in (the porridge) in the morning. I told (him) to do that…for building you up a bit. (Jimmy)
The importance of these self-actions was the way they made Primrose feel about herself.
You know you are doing something yourself, as well as other people helping. It enables you to keep going. You know you are looking after yourself. (Stella)
Differing degrees of self-action
The number and range of self-action strategies adopted by the study participants varied.
Changing eating habits could be perceived as something beyond control, for which nothing could be done.
I cannot get rid of this chain of events that I am condemned. (Paul)
From this perspective the changes had taken on a permanency and were viewed as a fixed new way of being which, even though undesirable, was to be tolerated without question.
The majority of interviewees viewed changes in eating habit as a process over which they had some influence. Self-action was a way of shaping the pathway of change minimizing the negative outcomes.
The predisposition to self-act could either be promoted or blocked by other people and circumstances. Many carers focused on tempting and encouraging patients to eat, and this was perceived as helpful when it led to a variety foods being readily available.
So she got them and put them in the freezer so I can have one when I want. (Terry)
However, enthusiasm for trying to persuade patients to eat could block their ability to take self-action. Violet's daughter had learned that her own behaviour made a difference to what her mother would chose to eat. She explained:
I just try to judge and try to put the amount I think she will eat on the plate.…. I do restrain myself, as I know it only goes the other way if I put too much in front of her, then she feels she has to leave some, which will upset me. (Violet's daughter)
A theory of self-management of changing eating habits
Patients with advanced cancer can experience changing eating habits. When change precipitates concern, then thinking and behaving in new ways can restore a sense of well-being. New thoughts and behaviour can be generated by engaging in self-management, a component of which is self-action. Four self-action strategies were identified in the data, namely ‘Taking control’, ‘Promoting self-worth’, ‘Relationship work’, and ‘Distraction’. The propensity to self-act is mediated by both personal and contextual resources. When people spontaneously draw on resources they are taking self-action. When they are directed by others to draw on these resources they are engaging in the broader activity of self-management. Hence, living with changing eating habits is a dynamic process operating between changing eating habits and personal plus contextual resources (see Figure 1).
This theory of self-management of changing eating habits when living with advanced cancer leads to the hypothesis that it is possible to facilitate self-action and/or self-management by changing the personal or contextual resources available. It seems that an eclectic approach to the promotion of self-management might be most effective. Such an approach would seek to bring about change through intervention at the level of the individual, such as by supporting self-efficacy, but also at the level of the patient's social network. Empowering patients to self-act through the provision of appropriate resources may be an effective way to promote the health and well-being of many people living with advanced cancer.
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The contribution of this paper to the nursing and cancer literature is a theory of self-management of the changes in eating habits that often accompany advanced cancer. The theory leads to propositions of how nurses may facilitate self-management of the symptom through support of the self-action component of self-management. Self-action is the self-initiated activity that helps someone to live with changes in the ability to eat. Self-management has broader scope. It encompasses not only self-action, but action initiated by others, such as self-management training. Kralik et al. (2004) identify acts initiated by people with arthritis to manage daily life, but do not differentiate these from other self-management activity. The importance of understanding the concept of self-action is the potential it offers up for generating interventions that can complement the already established self-management programmes for people with chronic illness.
The theory proposes that modifying personal and contextual resources can facilitate the process of self-action, leading to enhanced health and well-being. An example might be web-based information about typical changes in food intake that can accompany advanced cancer, as some participants in this study were keen to point out the irrelevance of publications about diet for people with cancer who have an expectation of cure. Bandura's cognitive learning theory (Bandura 2001) provides one explanatory mechanism through which the provision of greater resources might operate: information can be understood as fuel for human agency within the uncertain and changing world of life with advanced cancer.
The context required to support self-action
Jack (2003), when considering diabetes management, proposes three models for the delivery of health interventions that can bring about behavioural change. The first, ‘traditional’, is doing things for the patient. The second, ‘collaborative’, is doing things in negotiation with the patient, and the third is ‘self-care education’. Self-care education enhances knowledge, changes psychological approaches (e.g. strengthens self-efficacy), and brings about behavioural change. It is ‘emancipatory’ through empowering people to do things for themselves (Tones 2002). Traditionally, healthcare professionals working in palliative care have engaged in a process of problem identification and taken responsibility for deciding on interventions, when appropriate involving patients in a discussion of possibilities. Facilitating self-action seems to demand an approach which complements, but is different to the traditional or collaborative models. In this approach, assessment is used to identify the solutions a patient has already discovered for themselves and interventions are implemented to build on this existing strength. This approach is consistent with an emancipatory model of healthcare delivery and is a shift from doing things for people to one of enabling them to do things for themselves. Tones (2002) argues that to a move to an emancipatory model requires a paradigm shift from beliefs that frame the individual as a victim with a problem to seeing the individual as an empowered agent with a solution.
The paradigm shift required to complement traditional and collaborative health care with support for self-action is likely to prove challenging in practice. The UK Expert Patient Programme (Department of Health 2001) is founded on the assumption that passive conformity to acquiring knowledge and skills may not be as powerful as enabling active engagement in generating solutions to health problems. Whilst a broad definition of education is adopted that includes knowledge acquisition, new ways of thinking and skill acquisition (Tones & Tilford 2001), early evaluation of the programmes reveals that the underpinning philosophy is not borne out in practice (Kennedy et al. 2005). The underpinning idea of critical education that empowers people to change (Tones 2002) is not practised due to limited appreciation of the paradigm underpinning self-management and because of the need for cultural change from a problem-focused to a solution-focused approach to care.
Is facilitation of self-action consistent with palliative care philosophy?
Palliative care offers a support system to help patients live as actively as possible until death.
A maxim of the hospice movement, attributed to its founder Dame Cicely Saunders, is to enable people to ‘live until they die’. An interpretation of this mission is that hospice care enables people to continue to engage socially and emotionally in life, in spite of physical decline and knowledge of impending death.
The data reported in this paper provide evidence that, for some people, living as actively as possible is achieved by taking self-action. Therefore, support for self-action may be one way in which nurses can enable patients to resist social death. Empowering patients to self-act, if this is their preferred way of living with cancer, seems consistent with the palliative and hospice care commitment to enable people to live until they die.
This study was conducted with people with advanced cancer who were living in their own homes in the south of England, a relatively affluent part of the UK. This limits the generalizability of the theory, which now needs to be tested in different contexts and with people at different stages of the cancer journey. The importance of this is to test whether the theory offers a foundation for complex interventions that support self-management of eating problems across the cancer journey, or whether it is disease stage- and culturally-specific. Furthermore, the theory needs to be tested longitudinally because the theory is based on self-reported accounts of self-action at one point in time. Following people across time would enable deeper insight into the nature of self-action and establish if it is a manifestation of a dynamic process.
Implications for nursing
Self-management is of increasing interest in cancer care as people are living longer with a cancer diagnosis. The issues faced by people living long-term with cancer may, in part, be shared with those living with other chronic conditions (Tritter & Calnan 2002). Interventions found helpful by those with arthritis, diabetes and mental health problems may also lead to improved health and well-being in people with cancer. In turn, this could result in fewer demands on limited healthcare resources.
The Expert Patient Programme in the UK (Department of Health 2001) and the Chronic Disease Self-Management Program in the USA (Lorig & Holman 2003) focus on educating patients to self-manage better the changes brought about by their chronic illness. None of the patients with advanced cancer in the present study were actively seeking education in self-management. In part this was because their disease status and its associated symptoms confined them to their own homes. However, the majority gave accounts of activities that had helped them live with changing eating habits. These were labelled self-actions, as participants did not attribute the source of these thoughts and behaviours to healthcare professionals. Self-action is a component of self-management previously not differentiated in the literature. Whilst it is tempting to think that elucidating self-actions can enable self-management programmes to be strengthened, this may not be the outcome. Self-actions are part of a life affirming process of personal discovery, and the experience of self-acting is of itself therapeutic. To self-act was to take some control in an uncertain and changing world by doing something to help oneself. Further work is needed to establish whether empowering people to self-act can improve patient outcomes and reduce healthcare costs.