The Balance Between Food and Medical Care: Experiences of Food Insecurity Among Cancer Survivors and Informal Caregivers

Abstract

Defined as an inability to acquire enough food because of insufficient money or other resources, the prevalence of food insecurity is markedly higher among cancer survivors than the general population. The objective of this qualitative study was to understand and characterize the experience of food insecurity from the perspective of cancer survivors’ and their informal caregivers using qualitative interviews. Barriers to healthy eating, behaviors and strategies in times of food shortage, and unmet educational needs shaped the experience of food insecurity. These experiences and insights for addressing food insecurity in oncology practice have broad implications for future interventions.

Introduction

Over 37 million people in the United States (US) live in households that are uncertain of having, or unable to acquire, enough food to meet the needs of all their members because they have insufficient money or other resources for food ¹. Substantial evidence demonstrates that food insecurity negatively impacts the management of chronic diseases, including diabetes, hypertension, and cardiovascular disease ^{2, 3}. A cyclic model of food insecurity and chronic disease posits a tenuous balance between reducing healthcare and medication utilization to have enough money for food or going hungry in order to afford medical care ⁴. Food insecurity is increasingly recognized as a social determinant of health contributing to health disparities among socioeconomically vulnerable patients ⁵. Food insecurity is associated with poor treatment adherence,^6–8 inadequate symptom control ^{4, 9}, and increased utilization of high cost services.^10–14 Numerous professional organizations and the Centers for Medicare and Medicaid Services advocate screening for food insecurity in healthcare settings using the validated Hunger VitalSign™ 2-item screening tool ^15–19. Moreover, clinical referrals to evidence-based food resource programs, including food banks, monetary assistance, and the Supplemental Nutrition Assistance Program (SNAP) have been shown to reduce food insecurity and evidence, both theoretical and empirical, suggests that addressing food insecurity has the potential to impact changes in body mass index, lower stress, improve self-efficacy and health related quality of life ^{4, 9, 18}.

Recent studies suggest that cancer survivors disproportionately experience food insecurity compared to the general population ^{8, 20, 21}. While 11% of household in the US are estimated to be food insecure ¹, food insecurity prevalence estimates range from 17% among primarily Non-Hispanic white cancer survivors in an academic medical center in Kentucky to 56% among low-income cancer survivors in federally qualified health centers in New York City ^{8, 20}. In a study of cancer survivors identified through the population-based New Mexico Tumor Registry, our research team recently found that 36% of cancer patients report food insecurity in the year following a cancer diagnosis ²¹, compared to 18% of all adults in New Mexico ¹. The high costs of cancer care and associated financial hardship, experienced by as many as 50% of cancer survivors ²², contribute to new and persistent food insecurity among cancer survivors. Forty-six percent of cancer survivors in a recent study reported reducing spending on food and clothing to cope with the cost of medical care ²³. The National Comprehensive Cancer Network (NCCN) clinical practice guidelines recommended screening for distress, including financial, housing, insurance, employment, and child care concerns ²⁴. Screening for food insecurity, however, is not yet part of routine oncology practice ²⁵. A lack of knowledge about how to implement food insecurity screening and refer food insecure cancer survivors to evidence-based food resources hinders progress towards addressing this social determinant of health in oncology practice.

Research on food insecurity among cancer patients is limited and little is known about the lived experience of cancer survivors and informal caregivers with competing food resource and medical care needs. In this study we sought to understand and characterize the experience of food insecurity from the perspective of cancer survivors’ and their informal caregivers. Drawing from a rich history of qualitative studies on food insecurity in other settings ^26–30, our objective was to identify unique and unmet needs of cancer survivors and their informal caregivers that could be amenable to intervention using a socioecological view in which multiple levels of contextual determinants affect individual outcomes ³¹.

Materials and Methods

The qualitative study reported here was part of the mixed-methods sequential explanatory Comprehensive History of Individuals’ Cancer Experience (CHOICE) Project. The first phase of the CHOICE Project consisted of a quantitative survey of 394 population-based cancer survivors in New Mexico, the methods and results of which have been published previously ²¹. Briefly, the survey quantified experiences of financial hardship and food insecurity among individuals age 21-64, diagnosed with stage I-III breast, colorectal, or prostate cancer in the state of New Mexico between January 1, 2008 and 2016. In the quantitative survey, participants were asked whether they had an informal caregiver, defined as a family member, significant other, or friend that managed the participant’s care ³², and was specifically involved in financial decision making. If so, the participant had the option of providing contact information for the caregiver for recruitment into the qualitative phase of the study.

Cancer survivors who reported food insecurity in the 12-months following their cancer diagnosis and provided contact information for a reported informal caregiver were invited to participate in a semi-structured, in-depth interview. One informal caregiver for each cancer survivor was also invited to participate in a separate semi-structured, in-depth interview. All participants were individually consented and cancer survivors and informal caregivers did not need to be dyads to participate in the study. At the completion of the interview, each participant was provided a $50 merchandise card.

Interview guides for the cancer survivors and informal caregivers were developed separately to elicit experiences at the individual patient level and the level of family and social supports within the socioecological framework (Figure 1). However, while the questions pertained to the lived experience of the individual, there were cross-cutting categories of questions about food needs during and after cancer treatment, resulting in a high degree of thematic overlap between cancer survivors and caregivers. Informed by the multiple levels of the socioecological framework, the interview guides also asked about the interaction between the cancer survivor, the informal caregiver, the oncology care team, the oncology practice setting, the local community environment, and state and national policy to better understand potential components of a food insecurity prevention intervention and to elicit existing strategies for addressing food insecurity, as shown in Figure 1. We asked survivors the following question about food insecurity: “Some people that we have talked to reported having trouble buying healthy food or not having enough food to eat while they were being treated for cancer. Is this something that you ever experienced?” If a survivor responded no, we probed their response by asking: “Was food something that you prioritized in your budget while you were being treated for cancer?” However, if they responded that they had experienced difficulty affording or accessing food, we proceeded to follow-up with a set of open-ended questions to identify strategies and behaviors used when food supplies were insufficient and money was not available to acquire food. A similar initial question was asked of caregivers: “Some of the cancer survivors that we have talked to reported having trouble buying healthy food or not having enough food to eat while they were being treated for cancer. Is this something that you and your loved one ever experienced?” The follow-up questions followed the same format as those asked of survivors. In addition, the interview guides included open-ended questions about the acceptability and preferred modality of implementing the 2-item food insecurity screening tool in the clinic setting.

Figure 1.

Multilevel influences on the experience of food insecurity among cancer survivors and informal caregivers

Given the vast geographic dispersion of population-based cancer survivors across the state of New Mexico, all interviews were conducted by telephone and audio-recorded. Audio-recordings were transcribed. Initial analysis of the transcripts involved close reading and hand-coding of pre-determined and emergent themes. This process was done independently by each member of the research team. Pre-determined themes included the acceptability of food insecurity screening and strategies to address food insecurity in the clinic setting. After reviewing the identified themes, a shared coding structure was developed and the transcripts were reviewed and coded again, using an iterative coding process.³³ Quotations representative of the themes identified are provided within the results section and have been lightly edited for clarity and brevity. Demographic characteristics of cancer survivors were ascertained from the quantitative survey, while informal caregivers were only asked about their gender and relationship to the cancer survivor. Descriptive statistics including the median, frequencies, and proportions were used to characterize the study population.

Results

One-hundred individuals (50 cancer survivors and 50 caregivers) were invited to participate in the qualitative phase of this study (Figure 2). Twenty-eight cancer survivors and 19 caregivers responded to the invitation and 17 cancer survivors and 11 caregivers completed interviews (n=28). Nineteen individuals responded to the invitation to participate but were not interviewed because thematic saturation was reached after the first 28 interviews. Compared to cancer survivors who responded to the interview, non-respondents were more likely to be male, Hispanic, and diagnosed with prostate cancer (Table 1). No data was collected on non-respondent caregivers.

Figure 2.

Study Sampling and Response

Table 1.

Demographic Characteristics of the Study Population

	Respondents		Non-Respondents
	Cancer Survivors (n=17)	Informal Caregivers (n=11)	Cancer Survivors (n=22)
Characteristic	n (%)	n (%)	n (%)
Gender
Female	15 (88%)	5 (46%)	13 (59%)
Male	2 (12%)	6 (54%)	9 (41%)
Ethnicity
Hispanic	5 (29%)		9 (41%)
Non-Hispanic	12 (71%)		13 (59%)
Cancer Site
Breast	12 (71%)		12 (55%)
Colorectal	4 (23%)		3 (14%)
Prostate	1 (6%)		7 (32%)
Insurance type at diagnosis
Private	10 (59%)		15 (68%)
Medicaid	5 (29%)		6 (27%)
Uninsured	2 (12%)		1 (5%)
Annual household income
<$30,000	6 (35%)		9 (41%)
$30,000-$49,999	4 (24%)		4 (18%)
≥$50,000	7 (41%)		9(41%)
Relationship to cancer survivor
Spouse/partner		10 (91%)
Sibling		1 (9%)

Among respondents, cancer survivors ranged in age from 40 to 64 years and tended to be female (88%), non-Hispanic (71%), and to have private health insurance (59%) (Table 1). Informal caregivers were more likely to be male (55%) and all but one caregiver was a spouse or partner of the cancer survivor.

Overall, three themes emerged from the thematic coding analysis: Barriers to healthy eating, coping strategies, and educational needs (Table 2). In addition, information about the acceptability of food insecurity screening and strategies to address food insecurity in the oncology clinic proposed by participants were grouped into these two predetermined themes.

Table 2:

Summary of Themes & Categories Identified from Cancer Survivor and Informal Caregiver Interviews

Themes	Category
Emergent Barriers to health eating	Quality of food Affordability
Behaviors and strategies in times of food shortage	Coping strategies Economic trade-offs Decision making
Educational needs	Survivor needs Caregiver needs Provider education
Predetermined
Acceptability of food insecurity screening	Modality
	Timing
Strategies to address food insecurity	Individual level
	Organizational level

Barriers to Healthy Eating

Multiple survivors cited the importance of eating healthfully during treatment. Eating fresh and organic produce, avoiding processed foods and foods high in sugar were described as healthy eating behaviors by cancer survivors. Although there was agreement among survivors on the importance of eating well, there were myriad barriers cited in reference to the practicality of having a healthful diet. Healthful food was routinely referred to as being more “expensive”, “perishable”, and “time-consuming” to prepare as compared to less healthful foods. For example, one survivor said:

“It’s very, very costly to purchase things that are healthy…for sure…it’s very expensive. Economically you got to pick and choose the foods you can afford to eat…whether it’s healthful or not is a whole different story. So, it is one of those things you trade-off.”

The trade-off between healthful food and cost was a widely shared experience, as noted by another participant:

“When you’re in a lower income bracket you’d definitely like to be able to eat more healthfully but the healthier foods are more expensive. So, we would get by with what we could. Some of those things would be more higher carb foods.”

The unaffordability of healthy food caused stress for informal caregivers who were often tasked with acquiring food for the household. Caregivers understood that cancer survivors desired healthy food, but as one caregiver explained:

“The number one thing that stresses me out, even when I go grocery shopping now, is trying to afford decent food.”

Behaviors and Strategies in Times of Food Shortage

Cancer survivors and their informal caregivers shared different techniques they employed to handle issues surrounding accessing and affording food. Some participants noted that they qualified for SNAP and that this was a critical supplement to their ability to afford food, as one survivor said:

“We qualified for food stamps…and that honestly was the thing that really saved us.”

Other participants lamented their inability to access food assistance programs. A survivor stated:

“It got to a point where there were times where we really couldn’t afford to buy a lot of groceries and I qualified for Medicaid but I didn’t qualify for SNAP. I didn’t have that to rely on and so yeah there were times where we were a little worried about the grocery situation.”

Some participants identified local food banks as a resource they utilized. However, participants expressed concerns about the quality of the food that they received at food banks. One caregiver noted that the food bank provided a box of highly processed food that he didn’t feel was nutritionally appropriate for his partner saying:

“I’ve seen food they give out and it is pretty much all processed food and I didn’t really wanna do any of that.”

One survivor described food banks as a place where:

“They give you all these carbs and all these starchy, starchy foods…foods that are not very healthy for you.”

Other coping strategies included trying to make food “stretch” until there was money to buy more. For example, one participant reported resorting to processed, packaged products such as “Hamburger Helper” to “bulk-up” meals when money for fresh food ran out.

Finally, survivors and caregivers shared details of the difficult, financially driven decisions they had to make. Skipping meals was noted as a strategy used by multiple caregivers:

“There were times that her health was more important than us eating. Sometimes I would go without food. She would eat, but I wouldn’t.”

Another caregiver shared a similar sentiment regarding the decision to skip meals:

“I was not eating to make sure that I could buy and cook her healthier food.”

Another trade-off that was routinely noted was between being able to afford food and obtain medical treatment. One caregiver explained that he and his wife had to make difficult decisions regarding getting her recommended medical care:

“There were a couple of times that we canceled doctor’s appointments because we just didn’t have the money to make the trip and keep ourselves fed and a roof over our head.”

Social support helped some cancer survivors and caregivers navigate times of food scarcity. During treatment, it was common for neighbors, friends, family, and religious or social groups to bring meals to the patient and their family. One participant explained:

“We had a friend who set up a meal tree thing. She set it up and then people would choose which days they wanted to bring stuff. A lot of times they brought food for 2 or 3 meals. Money was always tight, so if they weren’t doing that, it would have been more of a struggle.”

Financial and food support from social networks was critical for many participants. Technology, including online crowdfunding platforms were mentioned as a strategy that extended the reach of one’s social network beyond geographic boundaries:

“I had a GoFundMe page when I was first diagnosed. Actually, that came in quite handy when we were having trouble …. we used that to eat. That fund went to cover most of those costs.”

Educational Needs

Although many survivors told us that their physician encouraged them to eat healthful meals, it was less evident that survivors felt well-informed or capable of actually making healthful choices. Many survivors stated that they never met with a dietitian during treatment and were provided, at best, with basic, untailored nutrition information. One survivor said:

“I talked with my doctor and my surgeon about what they thought I should be eating, but no, I did not meet with a nutritionist. I think that a lot of people don’t realize what impact food has on your body.”

Another shared that learning how to eat well was not an easy task, saying:

“At the beginning, I didn’t quite understand. I’ve educated myself on how I can make better choices at the grocery store.”

The lack of formal nutrition education and confusion over how to make the best dietary choices was an issue also echoed by many caregivers. Caregivers expressed interest in learning how to best care for their loved one’s dietary needs during treatment.

Our participants identified the need for nutrition education for both survivors and caregivers. However, we were also told that providers need to be educated on nutrition for cancer patients and be given the tools to effectively pass this information along. One participant summarized this issue saying:

“I think that it is worth considering some sort of education within the care delivery [system] of the cancer center. Nutrition is not something that doctors typically talk about.”

Acceptability of Food Insecurity Screening

We asked participants whether they would have wanted to talk about their food needs with someone at the cancer care while receiving cancer care. In general, people were open to and supportive of implementing food insecurity screening. However, there were some concerns about how the screening would be conducted so that it did not induce shame among those already suffering. One participant said:

“We’re already stigmatized enough just by having cancer.”

Other individuals specified the importance of screening everyone for food insecurity, explaining:

“I like the idea that it’s universal. Not just, “Oh, the provider thinks you might not get enough food,” but everybody is asked those questions at every third visit or something like that. I think that way you’re not feeling like you’re singling out anybody.”

Another individual went a step further in describing how food insecurity screening should be approached. This participant felt that not only should the screening be universal, but that the importance of proper nutrition during treatment should be emphasized to minimize any potential stigma associated with being labeled as “food insecure”. She described how a medical provider could approach the screening in a sensitive manner by making proper nutrition the focus of the conversation:

“To me, things like data work, to be able to say, “It has been shown that these types of foods can help you with your own physical and mental challenges with helping your body overcome some of the challenges of cancer and the treatments.”

Other participants agreed with this idea and felt that everyone should be offered both nutrition education and access to healthful foods.

There were conflicting opinions on the best modality to use for the screening. Some participants felt that being asked the screening questions on paper would be less intrusive, while others said it was important to ask the screening questions face-to-face to ensure any issues could be addressed without adding to the already heavy paperwork burden that patients face at each appointment. Participants agreed that the screening should occur routinely, but that an individual should not be screened at their initial appointment because that appointment is very overwhelming emotionally.

Strategies to Address Food Insecurity in the Oncology Clinic

As we discussed the acceptability of screening for food insecurity, participants proposed numerous ideas about how to address food insecurity in the oncology clinic.

Strategies on how best to offer access to fresh, healthful foods. One idea was to:

“Give people some sort of voucher that could just be used for food. That would be cool, like some sort of gift card or some kind of—like, cards for a store that most people have access to.”

A number of other ideas were proposed to help patients access food. Some participants suggested providing cancer patients with a bag or box of food during their visit to the cancer center or having an on-site food pantry for cancer patients and their families to access freely. In addition, one caregiver suggested having a garden to cultivate fresh food, stating:

“I even tried growing food, green leafy vegetables to try to help with some of those costs. Yeah, I still do it now.”

While this caregiver had developed a garden at home, he thought that it could also be implemented at the cancer center so that more people could contribute and work together to grow food for cancer patients.

Discussion

Cancer survivor and caregiver experiences with food insecurity reflect shared struggles between acquiring enough healthy food and affording medical care. Barriers to healthy eating, behaviors and strategies in times of food shortage, and educational needs emerged as key themes among the food insecure cancer survivors and caregivers interviewed. Along with their perspectives on the acceptability of food insecurity screening and strategies to address food insecurity in the oncology clinic, the themes identified in this study have implications for intervention at several levels of the socioecological framework (Figure 1). While individual beliefs and knowledge drove the desire to increase consumption of fresh produce, the determinants of acquiring this food were found at other levels, including caregivers who were often tasked with grocery shopping, family and social supports who provided meals during treatment, local food banks, and SNAP.

Screening for food insecurity screening in the oncology clinic setting was overwhelmingly accepted as a strategy for intervention by cancer survivors and caregivers. Previous studies similarly find that providers and patients are amenable to food insecurity screening in primary care and several best practices have emerged from research in this area ^34–37. The experience of food insecurity is often associated with social stigma that can be particularly damaging for cancer survivors who already feel stigmatized by their diagnosis. Training providers to understand these feelings of stigma and identifying culturally appropriate and sensitive ways to ask about food needs is an active area of research to overcome the potential for social desirability bias in response to screening questions and ensure that food insecurity screening is acceptable to all patients ^38–40. The suggestion by one of the cancer survivors in our study to make food insecurity screening universal, asking it of all patients rather than targeting based on income, insurance or other sociodemographic characteristics, may avoid such stigmatization.

Screening alone will not be sufficient to address food insecurity. Implementing a program of referral and follow-up for patients who screen positive is critical to changing health outcomes. Numerous strategies for addressing food insecurity were identified by cancer survivors and caregivers in this study, including tapping into social networks for food or monetary assistance, growing fresh produce, utilizing local food banks, and using SNAP benefits. The conflicting perspectives on food banks and the difficulties accessing SNAP benefits, however, suggest that no one strategy will work for all. While cancer survivors and caregivers turned to local food banks to obtain food, several mentioned that the food received from food banks was often highly processed and did not meet the need for fresh produce. Although food banks helped individuals in many ways, participants expressed a lack of agency over what food was available and concern about whether it was appropriate for the health needs of cancer survivors. These concerns highlight the structural and policy level realities of emergency food distribution in the US, in which surplus food from the USDA and damaged and unmarketable food from processors is repurposed for distribution by food banks ³⁰. Reducing financial barriers so cancer survivors and caregivers can purchase their own healthy food was a more acceptable strategy for many participants. However, the strict eligibility for SNAP benefits limited the access to existing financial resources for some cancer survivors and caregivers in this population. Specifically, income barriers posed a particular problem for several cancer survivors and caregivers who found themselves paying large out-of-pocket medical costs for their cancer treatment leaving them unable to meet basic needs despite having incomes that put them above the eligibility requirements for SNAP. Although not mentioned in our study, work requirements and immigration status may also pose barriers to accessing SNAP benefits.

Clinic-based interventions to address food insecurity are plentiful, although few are used in oncology settings ⁴¹. When hospital-based food pantries were made available in cancer clinics in New York City, Gany et al found that utilization was highest among older patients, immigrants, and patients with late-stage disease, suggesting that this program reached some of the most vulnerable populations served by the clinic ⁴². A supplemental food voucher program providing a monthly $230 grocery voucher to food insecure cancer patients in community cancer centers found that 77% of voucher funds went to the purchase of healthy foods, including fruits and vegetables ⁴³. These studies provide promising early results of food insecurity interventions among cancer patients, but long-term follow-up is needed to determine whether addressing food insecurity among cancer survivors can improve health outcomes. Addressing the lack of nutrition education and improving access to nutritious food are also important areas for future intervention. Previous work supports the effectiveness of one-on-one nutrition education with a Registered Dietitian in certain cancer patient populations ^44–46. Coupling individualized nutrition counseling that takes into account the financial burden of cancer and its treatment, along with increased access to healthful foods, could address the concerns noted by food insecure cancer survivors and caregivers about being unsure of how to maintain a healthful diet.

The findings of this study should be considered in context of its limitations. Although the cancer survivors we interviewed were sociodemographically diverse, they were almost all women. These perspectives may not reflect male cancer patient experiences. However, males were represented in the group of caregivers interviewed and shared important, understudied perspectives of the experience acquiring healthy food and sometimes forgoing their own needs to meet those of the cancer survivor. To feasibly conduct this study with limited resources, all interviews were conducted by telephone in English rather than in-person. This may have limited the ability of interviewers to build rapport with participants and, more importantly, excluded non-English speakers.

The shared experiences of food insecure cancer survivors and informal caregivers in this study provide important insights as to how to address food insecurity as a social determinant of health. Implementing universal food insecurity screening in oncology practices represents a key area for future work. Identifying food insecure patients and navigating them to a wide variety of resources has the potential to improve cancer outcomes.