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Address for correspondence: Carol M. Devine, PhD, RD, Division of Nutritional Sciences, Savage Hall, Cornell University, Ithaca, NY 14853-6301; Phone: (607) 255-2633; Fax: (607) 255-1033
To understand the meanings of diet, physical activity, and body weight in the context of women's cancer experiences.
Design
Grounded theory using 15 qualitative interviews and 3 focus groups.
Setting
Grassroots community cancer organizations in the northeastern United States.
Participants
Thirty-six white women cancer survivors; 86% had experienced breast cancer.
Main Outcome Measures
Participants' views of the meanings of body weight, diet, and physical activity in the context of the cancer.
Analysis
Procedures adapted from the constant comparative method of qualitative analysis using iterative open coding.
Results
Themes emerged along 3 intersecting dimensions: vulnerability and control, stress and living well, and uncertainty and confidence. Diet and body weight were seen as sources of increased vulnerability and distress. Uncertainty about diet heightened distress and lack of control. Physical activity was seen as a way to regain control and reduce distress.
Conclusions and Implications
Emergent themes of vulnerability–control, stress–living well, and uncertainty–confidence may aid in understanding and promoting health behaviors in the growing population of cancer survivors. Messages that resonated with participants included taking ownership over one's body, physical activity as stress reduction, healthy eating for overall health and quality of life, and a second chance to get it right.
Cancer survivors make up a growing proportion of the population. In 2012, there were an estimated 13.7 million United States (US) cancer survivors; the largest proportion (41%) had breast cancer.
Obesity, weight gain, a sedentary lifestyle, and alcohol consumption have been linked to reduced quality of life, overall mortality, and breast cancer recurrence.
The potential for reduced morbidity and mortality, coupled with the rising numbers of breast cancer survivors, highlights the need to address obesity, weight gain, physical activity, and dietary behaviors in this population.
In the face of cancer, defined here as including survivors' thoughts about why they developed cancer, as well as the significance of their cancer experiences,
may motivate health behaviors through beliefs about cancer causes and treatment and behavioral efficacy, or as a means of coping with the distress of illness.
Cancer survivors are more likely to adopt healthy dietary, exercise, and alcohol behaviors if they believe that these behaviors are associated with the cancer.
The conceptual foundation for this study was based on the rich tradition of research on the social construction of illness, a key perspective in the sociology of medicine.
Major themes from this perspective include the idea that all illness is socially constructed based on individual experiences, and that these constructions are embedded within social and cultural contexts. This foundation, which focused the current research on discovering the meanings of health behaviors and body weight among women who had experienced cancer, informed the study design, questioning route, and interpretation of findings.
Whereas the experiences of cancer diagnosis and treatment, and breast cancer in particular, have been extensively described,
the ways in which cancer affects the meanings of health behaviors have not been reported. The purpose of this study was to understand women's personal experiences and interpretations of cancer, health behaviors, and body weight. Study findings will be helpful in designing and impl-ementing strategies to improve the health, nutritional status, and quality of life of the increasing numbers of women surviving cancer.
Methods
A grounded theory approach guided this study because the research goal was to add to existing theory.
Qualitative methods were chosen because they best fit the research goal to understand the meanings of health behaviors from the perspective of cancer survivors. Because the researchers were interested in understanding the meanings of health behaviors in social context, and because they hoped that the study findings would help in the design of future interventions through such groups, study participants were recruited through 1 of 2 grassroots community cancer support organizations. Data were collected in 2 ways: through semi-structured individual interviews and through focus groups with cancer survivors. Semi-structured individual interviews allowed researchers to deeply explore personal meanings, beliefs, and experiences with dietary behavior, physical activity, and body weight, based on individual cancer stories. Focus groups
were conducted to understand how the meanings of weight gain, overweight and obesity, and cancer, as well as barriers to healthy eating and physical activity, were described in group settings. Focus groups also discussed preferences for specific kinds of behavioral interventions in community organizations.
Community Cancer Organizations
Two grassroots cancer support organizations were community study partners. Both were nonprofits, funded by grants and contributions, and operated by volunteers and paid staff for more than 10 years. Their services included cancer awareness, education, advocacy, and support for cancer survivors and their family and friends in comfortable settings for groups and individuals. Both were located in cities in the northeastern US and served 500–600 people living with or affected by cancer each year.
The 2 organizations were chosen for their variation in community size (population < 50,000 and > 200,000) and variety of services. Both had sponsored exercise groups, and 1 had sponsored information sessions on nutrition and cancer for their members, mostly cancer survivors. Key informant interviews with the executive director and the client services coordinator in each organization guided recruitment and instrument development and provided context for data interpretation.
Recruitment of Women Who Had Experienced Cancer
Women who had personally experienced cancer 1 or more years in the past and who were linked to 1 of the 2 community cancer support organizations were recruited for this study. Recruitment was conducted in fall 2010 by providing information about the study in organization newsletters, to membership e-mail lists, and on organization websites, as well as at organization meetings. Interested individuals responded by e-mail or by toll-free telephone call to the study coordinator. When they responded to recruitment messages, individuals were asked whether they preferred to participate in an interview or in a focus group. Because researchers wanted to be open to all members, women (and men) with all types of cancer were eligible, although women breast cancer survivors were expected to predominate because of their large presence in the partner organizations. The researchers informed participants that the study aimed to understand how they thought about eating, physical activity, and body weight in relation to their experience with cancer. All participants provided written informed consent following protocols approved by the Cornell University Institutional Research Board.
Interviews and Focus Groups
Three trained researchers who were experienced in the use of qualitative methods digitally audio-recorded and conducted interviews with 15 women cancer survivors and 3 focus groups (n = 3, 7, and 11) with an additional 21 survivors. The interviews and focus groups were conducted in person at cancer organization offices or by telephone (interviews), if requested. The interviews lasted about 60 minutes, and the focus groups, about 90 minutes. A semi-structured, open-ended interview guide included questions about (1) participants' experiences of weight gain and loss and changes in dietary and physical activity behaviors after diagnosis and treatment (eg, “How have your eating behaviors changed since diagnosis?”; (2) descriptions of the meanings of weight gain, obesity, and dietary and physical activity behaviors relative to cancer risk and recurrence (eg, “How do you think about the relationship of body weight to your cancer?”; and (3) views of the role of support groups in health promotion (eg, “What are some of the ways that community cancer groups might make it easier for cancer survivors to eat healthy and stay physically active?”). Interview guides were revised based on comments from key staff informants.
and a brief cancer history from each participant via a written demographic sheet were also collected from the study participants. Field notes were recorded after each interview or focus group on the interview environment, methods, analytic issues, and trustworthiness.
Qualitative Data Analysis
The researchers transcribed verbatim recordings of interviews (I) and focus groups (FG) with cancer survivors, and analyzed them. Analytic procedures were adapted from the constant comparative method.
Steps in the analysis included an iterative review of interview and focus group recordings and transcripts, field notes, and demographic information by the research team. Transcripts were open-coded by 2 experienced qualitative researchers who coded textual units according to topic, then sub-grouped those topics according to emergent themes. When triangulation of data from interviews and focus groups from both organizations indicated that themes did not differ by source, data were combined for analysis. Development of coding categories included 3 procedural elements: organization, verification, and nomination.
Categories were specified in an iterative process that included some pre-established categories and others that evolved during the analysis. Verification was based on both empirical and participative strategies. Strategies used to increase the credibility of findings included peer debriefing
in weekly team meetings. This led to the development of heuristics to represent the meanings and experiences described by participants. Saturation from data collection and analysis was completed, until no new themes emerged from interview and focus group transcripts.
The findings were interpreted in the context of existing theory and empirical research.
Results
The 36 white women who participated in this study had an average age of 61 years and a mean time since cancer diagnosis of 1.9 years. Participants were mostly married (67%) and college educated (78%). About half (53%) had household incomes that were “comfortable with some extras” and were employed (44%). A total of 43% self-reported height and weight in overweight or obese categories. In addition, 31 women (86%) had experienced breast cancer, 4 had other cancers, and 1 did not report cancer type. Some were involved as board members or weekly group participants in the cancer organizations; others attended occasional meetings.
The women who participated in this study provided unique personal insights as they described their experiences with body weight, dietary behavior, and physical activity during and after cancer diagnosis and treatment, and the meanings of these attributes and behaviors. Nevertheless, common themes emerged along 3 dimensions of meaning: (1) vulnerability and control, (2) stress and living well, and (3) uncertainty and confidence. In coping with vulnerability, participants described efforts to regain control over their lives. Women contrasted feelings of distress with a desire to live as well as possible. Finally, these women described beliefs ranging from uncertainty to confidence about the relationship of body weight, dietary intake, and physical activity to their cancer diagnosis and possible recurrence. The meanings of weight, diet, and physical activity behaviors ranged across all 3 dimensions, but clustered uniquely for each issue, as illustrated in the heuristic Figure. These heuristics are not intended to show the precise numerical location of participants' reflections. Rather, they illustrate how the meanings of weight, dietary behaviors, and physical activity tended to cluster qualitatively on the 3 dimensions.
FigureHeuristic (based on qualitative findings) illustrating dimensions of meaning of body weight (top), dietary behavior (middle), and physical activity (bottom) among 36 female cancer survivors in the northeastern US.
“It's one more thing I need to worry about” (I107). Discussions of body weight elicited strong responses, especially along the vulnerability–control and stress–living well dimensions. Study participants expressed vulnerability, loss, and blame and an overall lack of control over their weight. Contributing to these feelings were unexpected weight gains for some and loss of the ability to lose excess weight for others. These thoughts about weight also arose from feelings of blame from both self and others for the possible role of their weight in the development of cancer. A healthy body weight was seen as more important than ever for overall good health, but there was considerable uncertainty about the relationship of body weight to cancer recurrence.
About half of the individual women interviewed said they had gained and half had lost weight during and after cancer diagnosis and treatment. Weight gain in the process of cancer treatment was an unwelcome and “startling” (I101) surprise. Women who had gained weight attributed the gains to the use of chemotherapeutic agents, loss of the ability to be as active as they had been before, and/or the use of food for comfort. One woman (I108), who had gained about 18 kg (40 lb) during treatment, wished she had known that weight gain was a possible side effect of chemotherapy. Weight loss was related to shock and fear as well as a desire to gain control over one's health. One woman told of losing 5 kg (10 lb) after diagnosis because “I was afraid to eat.” Talking about cancer, overweight, and weight gain elicited expressions of blame: It's [overweight is] a way of people blaming you for your cancer. And it's a way of people blaming you for any future recurrence of cancer. Because everybody thinks weight is under your control. But it isn't necessarily so (FG1). Weight was also a focus of self-blame: You think you know, …, if I had [lost] that 10 pounds that you always think would make you a better person, and then you didn't, and then you got cancer (I131).
Some women said their cancer diagnosis provided a new motive for weight control. One woman, who had not had chemotherapy, had worked to lose 11 kg (25 lb) since her diagnosis because overweight meant “feeding cancer” (I116). Weight loss was part of a desire to gain control over cancer as well as other chronic diseases, but there were limits. A focus group participant expressed it this way:I know that anyplace you have a little extra fat you can store a little bit of that stuff to, you know, chase after another little cell that might want to grow. So I think that I've kind of come to a resolution. I'm four years out, that it doesn't matter how skinny you get, you can't get every ounce of fat (FG2).
Some women saw cancer as a turning point for overall health: “It doesn't matter where the breast cancer or coronary artery disease comes in; it's just part of wellness and health” (FG2). A woman who had changed her food choices and started to exercise said: “The ultimate responsibility lies with yourself. You've got one body. Typically you don't get a second chance to make it right” (FG2). A woman who had lost 14 kg (30 lb) by walking and going to the gym every day, said: “This is a good time for me to start taking care of myself” (FG3).
Thinking about weight and cancer was distressing and distracting. A woman (I107) who worried about environmental exposures and stress as cancer contributors said: “Trying to lose is stressful” and “one more thing to worry about.” Another participant observed that women feel “they don't have any emotional energy left to talk about weight loss” (I117). Support for weight loss from family members was not always appreciated. One woman related how she felt when her partnergets on me because of the link between increased estrogen because of the fat in breast cancer and other cancers and all that. … I understand he maybe means it in a good way because he doesn't want me to get another cancer, but you know, it's tough to hear and especially when I'm still dealing with other issues (FG1).
A negative case was a woman (I106) who did not worry about weight because she was “small” and always ate “pretty well.”
On the uncertainty–confidence dimension, beliefs about body weight and cancer were tempered by thoughts that many different things contributed to cancer risk. The case of “the thin vegan runner who gets breast cancer” (FG2) was raised as evidence that obesity was not the only risk factor for breast cancer. Their doubts about the relationship of body weight to breast cancer were summed up by 4 women who had done “everything right” (eg, I117) and still got cancer. Although most but not all participants “had heard” that obesity was associated with breast cancer risk, they were uncertain about the relationship of obesity to cancer recurrence. One woman who was convinced of this connection described her personal mission to warn her daughter and her friends about it (I135). Others thought that only overweight women needed to be told about the relationship between obesity and cancer.
Physicians did not discuss weight with their patients as much as women would have liked. One participant (I116) explained that her doctors likely did not bring up weight with her because “You're getting some bad news and people don't want to bring up weight” at a time when “you don't need any more negatives in your life.” Another woman said that her doctor had laughed when she asked about the relationship of her weight gain to her chemotherapy (I108).
Dietary Behavior
“I still have a fear factor of what I am putting in my body” (I101). Dietary behavior took on a new urgency for these women, but one that carried feelings of vulnerability, fear, stress, and uncertainty. One woman described breast cancer as a “wakeup call to take better care of yourself” (FG1), including healthy eating. Dietary behavior was described in ways that were much closer to the uncertainty than to the confidence side of that dimension. Many women felt ready and eager to make dietary changes, but they were uncertain what to eat. The most commonly mentioned need for help was a chance to sit down with a caring dietitian or nutritionist who was knowledgeable about cancer: “I wanted someone to put their arm around me and tell me about nutrition and that sort of thing” (I116).
Uncertainty about what to eat contributed to stress, blame, and vulnerability for many women. One participant lamented, “I can't eat anything” (FG2). Another woman asked herself, “Did I cause my cancer, and how did I do that?” (I105). A third presented her dilemma this way: “I have a lot more nutritional ‘shoulds’ since cancer” (I132). Overwhelming dietary advice from well-meaning friends and family made 1 participant “tune people out” (I105).
Some women described choosing food to regain control over their lives or “at least to have the best quality of life possible” (FG2). Attempts to take control were strengthened by beliefs that the dietary changes they were making would “work for heart health, too” (FG2). For 1 woman, this meant finding “just 1 small thing to do every day” (I132). For those who had made dietary changes, these changes were a form of “doing something to help yourself” (I116).
Physical Activity
“Exercise that was a good way, you know, to prevent another cancer diagnosis” (FG2). Physical activity grew in importance for many participants, but it could also be a challenge: “Before, it was something I just did. Now it's something I have to do. … Now I do it thinking of saving my life” (FG1). Exercise made 1 woman feel that she could “take control” of her own health, maybe the only way (I133). Another focus group participant expressed it: “What else can you do to make your life better than that [exercise]?” (FG3). Physical activity also meant “dealing with stress” (I101). Others described exercise as “a gift to myself” (FG3), as “something positive I can do for myself” (I131), or “mental recovery” (I135).
Early in treatment, physical activity was limited by pain and fatigue for some women, contributing to feelings of loss: “[Exercise] was just part of who I was. It was like walking and breathing,” and “It's the part of me that has changed the most since diagnosis” (FG1). Fatigue contributed to differences in energy: “I feel like I'm 90” (I118); “It's hard to get off the couch” (FG1); and “It's like a big cloud over you” (I116).
Physical activity fell on the confidence side of the equation. As expressed by 1 woman: “However much time you have, you're going to have a better time if you're in good shape” (I136). Cited benefits of physical activity were both physiological (eg, stronger immune system, muscle strength, weight management) and psychological (eg, handle stress, mood enhancement). Other than limits from pain and fatigue, no women expressed negative meanings or uncertainty about physical activity as a way to help them live as well as possible.
Support from Community Cancer Organizations
Participants expressed contradictions about the ways that cancer organizations might support healthy eating. There was enthusiasm for a series of healthy living classes sponsored by 1 organization. Women wanted to know as much as they could about diet and cancer, and they appreciated healthy foods at gatherings, but they also highlighted the importance of sweets: “I tell you, if you take away those treats, you will hear about it” (FG2). Being group members made these women “less likely to feel guilty for having brought it [cancer] on themselves” (FG3).
Support from their cancer organization and fellow cancer survivors encouraged physical activity: “I would not have done it on my own” (I101), “Knowing that someone is expecting me to be there, that's a huge motivator for me now” (FG1), “Special classes with other survivors feel safer” (FG2), and “Exercise classes [were] a way to connect with others” (I101).
In general, women saw a cancer diagnosis as an opportunity for them to adopt healthier behaviors, and participants wanted more information and support from their medical teams: “I wish I had gotten that information [about diet and exercise] at my appointments” (I101).
Responses did not differ in interviews and focus groups. Many women had participated in cancer support groups, and they were comfortable talking about cancer with other survivors.
Discussion
The participants in this study described their cancer experiences as individuals and group members as shaping the meanings of body weight and health behaviors. Novel findings of this study are the value of meaning making as a way to understand health behaviors in the context of cancer and the way that meanings were created through the intersection of the 3 dimensions of vulnerability and control, stress and living well, and uncertainty and confidence. These findings, grounded in the understanding of illness and health behavior as socially constructed, make a contribution by explicating how individual experiences of an illness such as cancer may affect the meanings of health behaviors and their adoption. These findings connect with the Health Belief Model
in their focus on perceptions about risks and benefits as determinants of action. However, these findings expand on the Health Belief Model concepts by drawing attention to the need also to understand the meanings of health behaviors and the social influences on their formation.
Increasing physical activity may contribute to cancer survivors' feelings of control over health and ability to cope with stress.
Key findings of this study were differences in the meanings of dietary behavior, physical activity, and weight that varied with women's uncertainty or confidence about the relationship of weight and health behaviors to cancer. For example, there was a clear difference in the portrayal of physical activity and dietary behavior. Universally, physical activity was described as a positive way to take control over one's health, reduce feelings of vulnerability, and cope with stress. Even women whose pain and fatigue limited activity in early treatment described physical activity in positive terms. Positive meanings of physical activity were accompanied by confidence that exercise would reduce stress, help prevent recurrence, and contribute to overall health.
Notably, meanings related to sedentary behavior and cancer risk did not emerge.
Education about the role of a healthy diet & weight during treatment and the effects of medications on weight may help reduce stress among cancer survivors.
In contrast, participants described dietary behavior in terms of vulnerability and blame as 1 of the things that might have caused their cancer and contributed to distress. Dietary changes held out the possibility of control over health and cancer for some women, which echoes earlier studies
Impact of diet-related cancer prevention messages written with cognitive and affective arguments on message characteristics, stages of change, and self-efficacy.
These cancer survivors described how ambiguous information about the relationship of diet to cancer risk and recurrence was an obstacle to their efforts to seek control and increase well-being. Ambiguity fed into a negative feedback loop of increased vulnerability and stress. This finding suggests that the study of meanings in illness needs to consider the context of those meanings. These findings may help explain why some women do not make post-diagnosis dietary changes.
Body weight was seen as a threat to life and overall health, and a sign of fear, helplessness, shame, and worry for many of these women. Although women expressed less uncertainty about the relationship of weight to cancer than they did about dietary behavior, weight control was a bigger challenge. The meanings of weight among these women appeared to differ by cancer treatment experiences and by life course experiences with body weight prior to cancer diagnosis. Women who had gained a lot of weight during chemotherapy or whose treatment had left them with pain and fatigue that restricted physical activity expressed both vulnerability and distress. The fact that women felt unprepared by their health care providers for the weight gain contributed to their feelings of frustration and distress, and to their labeling weight as something that was both beyond their control and their own fault. The negative meanings associated with body weight arising from a combination of unexpected weight gain, lack of control, and distress were a significant barrier to weight control for some women. The perceived reluctance of health care providers to discuss weight gain added to women's feelings of uncertainty. Alternatively, the experience of cancer was seen as a wakeup call for maintenance of healthy weight among women who had less debilitating cancer experiences, and who felt able to take action within the context of their long-term strategies and success in dealing with weight.
The meanings of dietary behaviors, physical activity, and weight were rooted in both individual cancer experiences and social interactions. The specific experiences these women cited included cancer stage and recurrence and treatment modalities as well as social interactions with health care providers, family, and other cancer survivors. The study reveals that these women saw their community cancer organizations and their interactions with other cancer survivors as a part of the social context that shaped the meanings of health behavior and weight.
The 3 dimensions of meaning that emerged from this study and the importance of connecting to others who have experienced cancer echo those described in prior research.
What the current study adds is evidence for the ways in which these meanings intersect to influence how women think about body weight and health behaviors after cancer.
The vulnerability–control dimension, like the issues of autonomy and control
The dimension of stress and living well centered on emotions such as fear, blame, and distress. Distress and fear have been reported among cancer survivors.
The current findings suggest that for some women, health behaviors and body weight held meanings related to morbidity, and potentially to personal mortality. These findings demonstrate the ways in which emotional distress may motivate health behaviors in the context of cancer.
Relative uncertainty about the efficacy of health behaviors in cancer risk and recurrence was a third theme in these narratives. Uncertainty may contribute to the ambivalence about lifestyle as a contributor to cancer risk.
Study participants referenced these groups as safe places for physical activity with others who shared their challenges. The role of cancer support groups in promoting healthy eating was mixed. These women appreciated their support groups as places where they could get information about diet and cancer, but the social functions of these groups meant that comfort foods were preferred and expected at group functions. Prior research on the role of cancer support groups has focused on psychosocial benefits. This study suggests a possible role for groups in supporting health-promoting behaviors.
The strengths of this study included the in-depth, open-ended interviews and focus groups that gave researchers insights into the meanings of health behaviors and weight among women who had experienced cancer. Interviews and focus groups allowed probing of these issues in both personal and group contexts. The key informants provided additional context. Participation by women from 2 different cancer organizations and the similarity of responses from those 2 settings increased confidence that the findings were not limited to 1 group.
These findings are limited by the small sample of women with cancer from 2 cities in the northeastern US. The limited racial and ethnic diversity of this well-educated sample of mostly breast cancer survivors restricts broad generalizations. Fewer of these women reported weights in the overweight or obese categories than did women in upstate New York on average.
Additional studies will be needed to determine how cancer type, timing, and treatment type may have influenced the findings. For example, women who have chemotherapy may be particularly susceptible to weight gain. Because these women were recruited from community cancer support groups, they may reflect the views of women who are better socially connected.
Implications for Research and Practice
These findings inform the study of meaning in the illness experience in 2 important ways: by illustrating how dimensions of meaning can intersect and by showing how these intersecting meanings can shape the meanings of health behaviors. As the number of long-term survivors of cancer continues to rise, understanding the meanings of health behaviors for individuals who have experienced chronic illness will grow in importance.
These findings suggest that research on health behaviors among cancer survivors should measure the dimensions of vulnerability–control, stress–living well, and uncertainty–confidence. Evaluating the perceived ambiguity of health information interacting with other psychosocial dimensions holds promise for explaining differences in health behaviors among survivors.
Nutrition education for cancer survivors should continue post-treatment because they are receptive to taking control of their health.
Understanding the meanings of health behaviors can contribute to health-promoting efforts among cancer survivors. Physical activity was the strategy that these women described with the most confidence as a way to promote well-being. Dedicated weight control classes, exercise groups, or nutrition classes for cancer survivors were highly valued. Whereas information about dietary strategies for breast cancer was seen as ambiguous and uncertain, messages about dietary behavior for overall health had resonance. These women would have welcomed sensitive information from health care providers about the role of weight in cancer and the effects of medications on weight gain. Messages that resonated with these women included taking ownership over one's body, reducing stress, and having a second chance to get it right.
Acknowledgments
This research was supported by grant 2010-34369-20775 from the National Institute for Food and Agriculture of the United States Department of Agriculture. The authors are grateful for the generosity of the staff and members of the 2 community cancer organizations who participated in this research; and Jennifer Cowan, PhD, for skillful assistance with data collection.
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Impact of diet-related cancer prevention messages written with cognitive and affective arguments on message characteristics, stages of change, and self-efficacy.
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