Psychological Experiences and Food Avoidance Behavior in Patients Following Esophageal Cancer Surgery: A Qualitative Study

Abstract

Background

Nutritional rehabilitation is essential for recovery after esophagectomy. However, food avoidance behavior is common and may compromise nutritional intake, quality of life, and postoperative recovery. This study aimed to explore the factors influencing food avoidance behavior and the psychological and contextual processes underlying such behavior after esophagectomy, with the aim of informing targeted psychosocial and behavioral interventions and individualized dietary management.

Methods

A descriptive qualitative design was used. Guided by the Roy Adaptation Model (RAM), a semi-structured interview guide was developed. Sixteen patients who had undergone esophagectomy were purposively recruited from a tertiary cancer hospital in central China. Directed content analysis was conducted, with NVivo 14.0 used to facilitate data organization and coding. The RAM guided the coding framework and category development.

Results

Four main categories and ten subcategories were identified: physiological function factors (taste changes and swallowing discomfort; recurrent symptoms), self-concept factors (lack of nutritional knowledge; fear of disease recurrence; traumatic experiences of illness), role function factors (the patient role limiting social functioning; social role priorities overriding dietary management), and interdependence factors (passive dietary restriction in dependent relationships; lack of post-discharge follow-up; economic burden).

Conclusions

Food avoidance behavior after esophagectomy reflects the interaction of physiological symptoms, illness-related beliefs and experiences, role-related challenges, caregiver influences, and limitations in post-discharge support. RAM-informed care should integrate individualized nutritional support, psychological counseling, behavioral guidance, caregiver education, and continuous follow-up to reduce unnecessary food avoidance and promote nutritional and psychological adaptation.

Introduction

Esophageal cancer represents a significant global health challenge because of its aggressive nature and poor prognosis. Globally, it ranks as the seventh most common cancer in terms of incidence and the sixth leading cause of cancer-related mortality.¹ The cornerstone of curative treatment, esophagectomy, is a complex and highly invasive procedure involving the resection of a portion or the entire esophagus.² This complex and highly invasive procedure involves the removal of part or all of the esophagus, followed by reconstruction using the stomach or, less commonly, the colon or jejunum to restore gastrointestinal continuity.³ This radical surgery inevitably results in profound and permanent alterations to normal upper gastrointestinal anatomy and physiology. Consequently, patients are prone to various postoperative complications and long-term functional sequelae. These include immediate surgical risks such as anastomotic leakage, chyle leakage, and pulmonary complications, as well as persistent digestive issues such as severe gastroesophageal reflux, dumping syndrome (early and late), delayed gastric emptying, dysphagia, anastomotic strictures and significant weight loss.^4–6 These symptoms may persist for months or years after surgery and can substantially disrupt normal eating patterns and digestive function.⁷ These alterations and complications fundamentally disrupt normal eating patterns and digestive function, laying the foundation for the complex dietary challenges faced by survivors.

Changes in eating behavior are the main problem faced by patients with esophageal cancer after surgery.⁸ Surgery makes the familiar eating behavior of patients strange, and most patients with esophageal cancer can no longer eat as before; thus, they have to establish a new eating behavior model.⁹ Patients are compelled to make substantial and often complex adaptations to their dietary habits. This includes consuming smaller, more frequent meals, meticulously modifying food textures (avoiding hard, dry, or fibrous foods), and adopting specific postural measures during and after eating (eg, remaining upright for hours).¹⁰ Therefore, patients bear a serious mental burden.¹¹ Missel et al reported that 59% of patients had difficulty eating six months after surgery,⁹ and Grace et al reported that only 37.7% and 41.5% of esophageal cancer patients reached their calorie target requirements at 3 months and 1 year after treatment, respectively.¹² Maintaining adequate nutritional status is crucial for esophageal cancer survivors after surgery. However, among this group of people, malnutrition is extremely common.¹³ This malnutrition is characterized by insufficient intake of energy and protein, leading to weight loss, muscle atrophy (sarcopenia), and micronutrient deficiency. This situation not only occurs in the preoperative stage but also persists for a long time after surgery.¹⁴ Studies have shown that patients with eating difficulties and insufficient food intake often have worse nutritional status.¹⁵ Malnutrition has a negative impact on long-term survival after surgery, which reduces quality of life, treatment tolerance, immune function and mobility and increases postoperative complications, morbidity and mortality.^15–17 Therefore, successful recovery depends on them learning how to eat again.

Despite the clear evidence linking nutrition to survival and quality of life and although medical staff attach great importance to the nutritional status of patients after esophageal cancer surgery, achieving and sustaining optimal nutritional intake remains a formidable challenge. Previous studies have shown that cancer patients in China adopt different forms of food avoidance behavior (ie, deliberately avoiding a certain food or a certain kind of food), frequently self-prescribe a diet and avoid eating some common foods for a long period of time.¹⁸ For post-esophagectomy patients, this tendency to avoid foods may be a particularly powerful, yet poorly understood, response to the distressing symptoms and complex dietary adaptations they face. Esophageal cancer is one of the most severely malnourished cancers.¹⁹ With the promotion of enhanced recovery after surgery (ERAS), esophageal cancer patients are discharged before their eating function has fully recovered.²⁰ Moreover, survivors of esophageal cancer often suffer from digestive tract symptoms, such as dysphagia, anorexia, obstruction, cough, reflux, nausea, vomiting, abdominal distension and diarrhea, which may lead patients to avoid foods to manage their distressing symptoms.^21,22 This situation creates a precarious dilemma: this food avoidance behavior, intended to prevent immediate discomfort, may paradoxically exacerbate long-term malnutrition, compromising survival and quality of life. The transition from a structured, supportive hospital environment to an autonomous, often resource-limited home environment represents a critical period where patients must independently implement and adapt dietary advice. Previous studies by our research team showed that patients with esophageal cancer experience evolving supportive care needs across different stages of the cancer trajectory²³ and that dietary guidance adherence during preoperative neoadjuvant therapy is influenced by multiple personal and contextual factors.²⁴ The present study extends this line of research by focusing specifically on food avoidance during postoperative recovery, a distinct behavioral issue that has received comparatively limited attention. Despite its high prevalence and negative impact on recovery, the subjective experiences and psychological mechanisms driving patients to actively avoid valuable foods after esophagectomy remain largely unexplored.

The Roy Adaptation Model (RAM) is a nursing theoretical framework that conceptualizes individuals as holistic adaptive systems that continually interact with a changing environment.²⁵ The RAM describes four adaptation modes: physiological function, self-concept, role function, and interdependence.²⁶ The physiological mode concerns the bodily processes required to maintain physical integrity. The self-concept mode encompasses individuals’ beliefs and feelings about themselves. The role function mode concerns the social roles that individuals occupy and their ability to meet the expectations associated with those roles. The interdependence mode emphasizes close relationships, support systems, and the giving and receiving of care. The RAM has been applied to understand adaptation and health-related behaviors among patients living with chronic illnesses.²⁷ Therefore, based on the RAM, this study used qualitative research methods to explore the factors influencing food avoidance behavior in patients with esophageal cancer after esophagectomy in detail, with the aim of developing more effective and patient-tailored nutritional support strategies that bridge the critical divide between clinical recommendations and sustainable home practices.

Materials and Methods

Study Design

This study used a descriptive qualitative study design to conduct semi-structured in-depth interviews. The reporting of this study adhered to the Consolidated Criteria for Reporting Qualitative Studies (COREQ) checklist.²⁸

Participants and Setting

Patients were recruited from June 2025 to July 2025 from the Department of Thoracic Surgery at a tertiary cancer hospital in central China. Researchers contacted participants who met the inclusion criteria by phone, introduced the content and purpose of the study to them, and invited them to participate. Eligible patients were (1) ≥18 years of age; (2) were diagnosed with esophageal cancer; (3) had received an oral diet for more than one week after discharge; (4) could eat on their own; (5) avoid a nutritionally valuable food group (eg, meats, fruits) without a clear medical indication (such as severe dysphagia or doctor-prescribed restriction); (6) had basic reading and comprehension skills; and (7) were able to provide informed written consent. The exclusion criteria for patients were as follows: (1) had any other type of cancer or (2) had other serious chronic diseases or psychiatric conditions. Purposive sampling was used to select participants and collect data to obtain a rich perspective of the experience, including different sexes, ages, cancer stages, educational levels, and discharge times. The sample size was determined by the data saturation principle, which refers to the absence of new categories from interviews.²⁹

Data Collection

The research team consists of a nurse with a bachelor’s degree, two graduate students majoring in nursing, one doctoral nursing student, and one professor. On the basis of the literature review and expert consultation, the initial interview guide based on the RAM was developed. After pilot interviews with three patients, the interview guide was partially revised to form the formal interview guide (Figure 1). The original Mandarin version of the semi-structured interview guide and its English translation are provided in Supplementary Table S1. The first author, a female scholar with a master’s degree in nursing and profound expertise in qualitative research, was responsible for conducting the interviews. One-to-one semi-structured interviews were conducted either face-to-face or online, and no other personnel were present during the interviews. Face‒to-face interviews were conducted in a small meeting room in the thoracic surgery department, whereas online interviews were carried out via the video call function of WeChat.

Figure 1.

Semi-structured interview guide.

The interviewer participated as a clinical nurse, which helped narrow the psychological distance between her and the subjects and promoted the establishment of trust. Throughout the interviewing procedure, a neutral attitude remained by the interviewer, and there were no suggestive statements. An audio recording device was used to record the entirety of each interview. Throughout the interview process, the order and content were dynamically adjusted in response to the interviewees’ responses, keeping relevance to the topic. The researcher also recorded nonverbal expressions, including facial expressions and body movements. The interviews were conducted in Mandarin, with all the participants affirming that language was not a barrier. The duration of each interview varied, with an average span of 30–50 minutes. At the end of each interview, the researcher provided a brief summary and asked the participants if they needed any clarification to improve the quality of the interview. After each interview, the researcher completed an interview memo, aiming to clearly document decisions, choices, and biases during the study. No repeat interviews were conducted. The interviews were transcribed verbatim and returned to all participants for verification. All 16 participants confirmed that the transcripts accurately reflected their interview content, and no substantive amendments were requested.

Ethical Considerations

The research was conducted under the principles outlined in the Declaration of Helsinki,³⁰ and ethical approval for this study was obtained from the study hospital (Approval no. 2024282). Before the interviews, the study objectives and procedures were explained to all participants, and written informed consent was obtained. All participants provided written informed consent for the publication of their anonymized responses, direct quotations, and the individual demographic and clinical details presented in Table 1. Participants were also informed that they could withdraw from the study at any time without any effect on their treatment or care. All participants consented to audio recording, and the interviews were conducted in Chinese using a recording pen.

Table 1.

Demographic and Clinical Characteristics of the Participants

Participant Number	Gender	Age (Years)	Marital Status	Employment Status	Histology	Pathological Stage (pTNM/ypTNM)	Neoadjuvant Chemotherapy	Postoperative Adjuvant Therapy Status at Interview	Feeding Tube at Discharge	Postoperative Hospital Stays (Days)	Time Since Discharge Following Esophagectomy	BMI at Interview (kg/m2)
1	Male	73	Married	Retired	SCC	II	Yes	Completed	Yes	13	6 months	19.2
2	Male	69	Widowed	Not employed	SCC	II	Yes	None	No	7	3 months	20.1
3	Female	49	Unmarried	Employed	SCC	III	No	Planned	No	7	2 weeks	18.5
4	Male	56	Married	Employed	SCC	III	No	Completed	Yes	34	7 months	19.8
5	Female	63	Widowed	Retired	SCC	II	No	None	No	13	2 weeks	17.8
6	Male	62	Married	Not employed	SCC	II	No	Completed	No	11	10 months	21.3
7	Male	61	Married	Not employed	SCC	II	Yes	Completed	Yes	15	8 months	20.5
8	Male	59	Married	Retired	SCC	I	Yes	None	No	8	5 months	22.1
9	Female	52	Unmarried	Not employed	SCC	I	No	None	No	9	1.5 years	21.8
10	Female	68	Married	Not employed	SCC	I	No	None	Yes	11	9 months	19.5
11	Male	76	Married	Not employed	Adenocarcinoma	III	No	Planned	No	13	2 months	18.1
12	Female	70	Married	Not employed	SCC	I	Yes	None	No	12	1 month	20.7
13	Male	57	Married	Employed	SCC	I	No	None	No	8	1 month	21.5
14	Male	55	Married	Employed	SCC	III	No	Completed	No	11	1 year	20.9
15	Female	65	Married	Not employed	SCC	II	No	None	No	11	15 months	22.3
16	Female	69	Married	Not employed	SCC	I	No	None	No	13	4 months	19.6

Notes: “Retired” refers to formal retirement, whereas “not employed” refers to having no current paid employment without formal retirement. Postoperative adjuvant therapy status was recorded at the time of interview: “None” indicates no postoperative adjuvant therapy; “Planned” indicates that postoperative adjuvant therapy was planned; and “Completed” indicates that postoperative adjuvant therapy had been completed.

Abbreviations: SCC, squamous cell carcinoma; pTNM, pathological TNM stage in patients who underwent surgery without neoadjuvant treatment; ypTNM, pathological TNM stage following neoadjuvant treatment.

Data Analysis

Following the completion of the interviews, the audio recordings were transcribed verbatim by two researchers in detail within 24 hours. All initial coding and theme development using directed content analysis were performed on these original Mandarin transcripts to prevent loss of meaning through early translation. Upon completion of the thematic analysis and the selection of representative quotes, the key findings, categories, and the selected participant quotes were translated into English by the first author (J.Q.H). NVivo 14.0 software was used to facilitate the organization, management, and coding of the qualitative data. NVivo supports the systematic organization, coding, categorization, and retrieval of qualitative data and can enhance transparency and rigor in the analytic process.³¹ Directed content analysis was used to code the text, including a 5-phase process.³² (1) Grasp the whole and synthesize the data of the research object to obtain the whole impression; (2) Determine the analysis unit, taking the sentence with practical meaning and reflecting the dilemma of avoiding eating behavior as the minimum analysis unit; (3) Construct the initial coding framework, and presuppose the initial theme coding under the guidance of four basic modes of RAM: physiological function, self-concept, role function and interdependence; (4) Content coding and classification: identify important connotations and concepts in text content, classify relevant content into preset theme categories, refine subcategories through iterative analysis, dynamically adjust the coding framework; (5) Conclude the explanation, establish the relationship between the text content and the selected categories and subcategories, and find the original sample corresponding to the original data. In cases where a discrepancy arose during the inductive coding and deductive categorization process, consultation with the corresponding author ensued to reach a consensus.

Rigor

The rigor of the qualitative study was assured via credibility, dependability, confirmability, and transferability.³³ To achieve credibility, the interviews were guided by questions developed from an extensive review of the literature, and the interviewer had prior experience in conducting qualitative interviews. In addition, all interview transcripts were returned to the participants for verification, and all participants confirmed the accuracy of their interview records. Representative quotations from the verified transcripts were subsequently presented in the Results section. To enhance dependability and confirmability, all interviews were conducted by a researcher, and the data were independently analyzed and coded by two researchers. Disagreements were resolved through discussion with a third researcher. Finally, to establish transferability, a detailed description of the study design and data collection and analysis process was provided. In addition, researchers always maintain a self-reflective attitude to ensure that observations and analyses can objectively and truly reflect the experiences and feelings of the subjects.

Results

Participant Characteristics

A total of 16 participants were included in the study, ranging in age from 49 to 76 years. All participants were of Han Chinese ethnicity. Fifteen participants had squamous cell carcinoma, while one had adenocarcinoma. Their demographic and clinical characteristics are presented in Table 1. Analysis of the interview data identified four main categories and ten subcategories corresponding to the four adaptation modes of the RAM. The original Mandarin quotations corresponding to the representative quotations presented in the Results, together with their English translations, are provided in Supplementary Table S2.

Identified Categories

Categories 1. Physiological Function Factors

Taste changes and swallowing discomfort. Patients often avoid some foods (such as some meat and vegetables) because of abnormal tastes (metallic taste, taste sensitivity/reduction) after surgery. They also actively avoid some hard, rough, large and dry foods (such as nuts, biscuits, and large pieces of meat) due to changes in postoperative anatomical structure to avoid swallowing discomfort and choking.

Strangely enough, after the surgery, the meat always smells like rust in the mouth and is difficult to swallow, so I basically do not eat it. I am not interested in eating anything now, and fruits and dairy products that I used to like have changed their taste now. I basically only eat porridge and rotten noodles. (P2)

I still eat vegetables, but those coarse fibers, such as celery, bamboo shoots, broccoli and leeks, are uncomfortable swallowing and easy to block. I will pick soft ones such as winter melons and eggplant now. (P7)

Recurrent symptoms. After esophageal cancer surgery, due to reconstruction of the digestive tract, the physiological structure and function of the stomach change, and patients have a decreased appetite and gastrointestinal dysfunction. After eating, abdominal distension, belching, nausea, vomiting, reflux, diarrhea and other digestive tract symptoms easily occur. When experiencing the recurrence or aggravation of these symptoms, patients tend to attribute their aggravation to recent food intake and adjust their eating behavior accordingly. These problems also help patients avoid diet as a coping strategy, leading to long-term diet structure simplification and nutritional imbalance.

Diet is related to the aggravation of symptoms. As soon as I feel uncomfortable, I will immediately adjust my diet, not eat, only drink nutritional powder, and I will be much better soon. (P5)

The appetite is much smaller than before, and I will be full after a few bites. If I eat too much, it is like putting a stone in my stomach, which is heavy and will not be digested for a long time. I vomited after eating a bowl of rice some time ago, and now I do not eat rice. (P8)

Categories 2. Self-Concept Factors

Lack of nutritional knowledge. Owing to the lack of necessary knowledge of nutrition and disease management, patients have an incorrect understanding of food composition and nutritional value, which further limits their self-decision-making. A lack of knowledge leads to unnecessary avoidance of diet and makes patients fall into a passive management dilemma.

When I was discharged from the hospital, the nurse gave me a piece of paper with discharge instructions. I only eat the foods listed on it. (P3)

If I’m not sure whether something is edible or not, I will not eat it. It is always the same few kinds of food every day. (P13)

Fear of disease recurrence. Because of the long treatment cycle, recurrent symptoms and poor prognosis of esophageal cancer, patients strongly agree with the identity of “cancer survivors” and regard diet as the key to controlling the risk of recurrence. They strongly believe that “illness comes from the mouth” and seek a sense of security and control by strictly controlling their diet. They may widely avoid all foods (such as seafood, mutton, sweets, some “cold” fruits and vegetables) that are recognized as “Fa wu” (which means nourishing and stimulating food) or “not conducive to recovery” by their individuals or cultures, even if there is no medical basis or if doctors do not explicitly prohibit them, to alleviate the fear of disease.

Beef and mutton, fish and shrimp are all considered “Fa wu”, and many people are afraid to eat these, saying that they are not good for rehabilitation. With this concept, you habitually avoid these foods. It is better to believe it exists than to think it does not. (P10)

I do not dare to eat fruit. These are all “cold”. My wife says it is bad for my health and easy to accumulate in my body. Although the doctor did not say I cannot eat fruit, I think I’d better not eat it. Safety first, I do not want to be a burden to my family anymore. (P14)

Traumatic experiences of illness. Physical, psychological and social trauma caused by long-term disease experience or body image damage caused by obvious emaciation, dependence on auxiliary tools (such as spoons and straws) or special eating methods (slow swallowing, frequent drinking and long eating times) can lead to emotional problems and reduce patients’ self-efficacy. Patients perceive the gap between themselves and their previous state and try to avoid triggering traumatic situations by avoiding diet.

Eating too much makes me uncomfortable, and sometimes I vomit. Therefore, I try to avoid eating. I’m not hungry anyway. (P15)

I was discharged with a stomach tube, and I watched the green gastric juice flow out of the tube. I felt particularly sick and never wanted to eat green leafy vegetables. (P10)

Categories 3. Role Function Factors

The patient role limiting social functioning. In the process of disease rehabilitation, some patients gradually accept and solidify the “patient role”. This leads patients to actively reduce social behaviors such as gathering friends and relatives and eating out, thus weakening their functional roles in family, collective and society, leading to social alienation and functional impairment.

Now I’m invited to a friend’s party, and I will not go because I’m sick, unlike their normal people, and we cannot eat together. I will just have some nutritional powder at home. (P3)

The food I eat is now different from others, which bothers me when I go out to eat. In addition, I do not go out for fear that others will laugh at me. (P15)

Social role priorities overriding dietary management. In the process of rehabilitation, some patients often face conflicts between social role responsibility and disease management. When patients cannot effectively perform their original core social role responsibilities due to dietary problems, some patients choose to fulfill social role responsibilities first to reduce the interference of disease on their work and life rhythms by avoiding diet. This compromise may further damage patients’ health.

I only eat a little bit of everything, for fear that vomiting or diarrhea will disrupt work rhythm. I have to keep a good balance between work and illness. (P14)

My son and daughter-in-law are busy, and I have to look after my little grandson alone. I do not want to add extra workload to my family because of my special condition. So I just eat whatever is available … It is very difficult for me to increase the variety of food. (P12)

Categories 4. Interdependence Factors

Passive dietary restriction in dependent relationships. The daily diet of patients is mainly controlled by the main caregivers (usually spouses and children), and the decision-making power of caregivers has a significant effect on patients’ diet avoidance behavior. Usually, caregivers may strictly limit patients’ food choices out of concern or overprotection, which leads patients to passively avoid more diverse or favorable foods. In addition, when this kind of supervision goes beyond a reasonable scope and becomes a continuous or compulsory intervention, it will deprive patients of the right to make dietary decisions, aggravate their excessive avoidance of diet and damage their physical and mental health.

My family always says that these foods are not nutritious and that those foods are junk food. I do not like some food they let me eat, and sometimes I prefer to be hungry. (P11)

My daughter is in charge of cooking for me every day and constantly reminds me to pay attention to my diet. I want to have some fish, but she’s afraid that I might get choked by the fish bones. I want to drink some yogurt, but she says there are too many additives. I’m under quite a lot of pressure. I found that I could not eat anything. (P6)

Lack of post-discharge follow-up. Owing to the heavy workload of medical staff in China, the follow-up plan and matters needing attention explained at discharge may not be clear and specific enough, and it is difficult to invest enough time and energy in systematic postoperative follow-up management. Second, the top cancer medical resources are highly concentrated in a few large cities and hospitals. After returning to their place of residence (especially in grassroots or rural areas) after surgery, patients face confusion and anxiety in practice due to the lack of effective communication channels and then avoid eating to avoid risks.

In the hospital, how much to eat and what food to eat every day were guided by medical staff. After discharge, no one took care of it, and we all relied on ourselves to explore. (P8)

The doctor told me to eat a high-protein and high-calorie diet when I got home, but he did not make it clear how and what to eat. (P4)

Economic burden. Because of the long treatment period, high incidence of complications, insufficient economic security for patients and limited scope and proportion of medical insurance reimbursement, patients with esophageal cancer are forced to compromise diet management, forming a single diet structure, which affects the rehabilitation of the disease.

Money is almost all spent, and some were even borrowed from friends. Now, I’m just glad to have something to eat. Nutritional balance is too difficult for me. (P1)

I still mostly eat steamed buns and porridge now. Fish and meat are too expensive. At most, I will just have some vegetables. (P16)

Discussion

With respect to physiological function factors, our results identified two subcategories, indicating that the physiological changes of patients constitute the most fundamental driving factor for them to adopt a food avoidance strategy. The participants in this study widely reported changes in taste and dysphagia to different degrees and some other gastrointestinal symptoms caused by treatment. These unpleasant physiological experiences work together to greatly deprive patients of the pleasure of eating and turn it into a task full of pain and fear. Therefore, patients actively “avoid some food” to avoid the negative physiological feelings that follow. Our results are highly consistent with those of many quantitative studies, which confirm that esophageal cancer patients suffer from multiple and severe symptoms during the postoperative recovery period.^34–36 Therefore, medical staff should regularly and systematically use effective symptom assessment tools (such as the EORTC QLQ-OES18 module) to screen patients instead of just focusing on diet and weight changes. For patients with swallowing discomfort, it is very important to refer them to therapists for swallowing function assessment and rehabilitation training in time. At the same time, clinical nutritionists should recommend adjusting food texture (soft food, paste food and mud food) and liquid consistency. Notably, our interviews revealed that the actual diets of participants were often highly monotonous and limited, heavily relying on soft staples such as porridge (congee), rotten noodles, and steamed buns, with meat intake significantly reduced or avoided altogether. Therefore, rather than merely listing forbidden foods, clinical dietary advice must be grounded in the reality of these current consumption patterns. Interventions should provide practical guidance on how to safely diversify and enhance the nutritional quality of the food patients are already eating, such as enriching porridge with protein powder, incorporating soft, well-cooked vegetables (like winter melon and eggplant), and recommendingspecific diet adjustment strategies (such as the use of lemon juice or spices to enhance flavor). In addition, we found a worrying phenomenon. The participants reported that after a certain food had caused nausea, vomiting, bloating or diarrhea once or more, they experienced strong conditioned avoidance. This avoidance is not only aimed at specific foods but is sometimes even generalized to other foods of the same texture, color or smell. This greatly limits the diversity of food and increases the risk of malnutrition. Medical staff should recommend that patients use diet diaries or diet management software to dynamically record the relationship between symptoms and food intake, formulate feasible individualized diet programs for them, and encourage diversified diets.³⁷ Evidence from randomized controlled trials has further demonstrated the clinical value of structured nutritional management in patients with esophageal cancer, including improvements in nutritional status and treatment-related outcomes, while postoperative oral nutritional supplementation may also help support nutritional recovery following esophagectomy.^38,39 When necessary, we can learn from the principles of cognitive behavioral therapy and adopt systematic desensitization strategies.⁴⁰ For example, in cooperation with patients, we should start with a small dose of food that is least likely to cause fear and gradually reintroduce the avoided food categories to ensure the necessary nutritional intake.

Considering self-concept factors, patients’ lack of knowledge and traumatic experiences have become the key incentives for them to avoid eating. First, the lack of knowledge limits the decision-making ability of patients’ independent diet. Many participants in this study expressed a deep sense of helplessness and confusion, which originated from the complexity and contradiction of nutritional information. They reported that when faced with advice from doctors, family members, friends and the internet, they lacked enough knowledge and judgment to make wise diet choices. This has led many patients to adopt the simplest and most conservative strategy, avoidance. They choose not to eat foods that they are not sure are “safe”, thus avoiding potential risks and inner anxiety. Moreover, research shows that there are three main food avoidance behaviors in cancer patients in China.⁴¹ In Chinese culture, many people believe that some daily foods have adverse effects on diseases (such as “Fa wu” and red meat), so patients are advised to avoid eating them. Our research has similar findings. The participants reported that their eating behavior was largely dominated by a deep fear of disease recurrence or progression, which often led them to perceive certain foods as potential threats. Therefore, their diet avoidance is no longer just based on current physical discomfort; rather, it is a future-oriented and defensive survival strategy. They use excessive dietary restrictions to alleviate the anxiety caused by great uncertainty, although this behavior lacks a scientific basis. In view of the above phenomenon, medical teams need to carry out structured, individualized and continuous nutritional education for patients. The provision of information should not be one-off but rather a dynamic process that runs through the whole process of treatment and rehabilitation. In addition, information should be clear, consistent and authoritative to reduce the interference of contradictory information. In addition, nutrition advice should be combined with patients’ cultural framework, and nutritionists or nutrition nurses who know traditional Chinese medical culture should be involved to build a more effective communication bridge between biomedicine and cultural beliefs.⁴² Finally, holistic supportive nursing must pay attention to the psychological and social adaptation of patients, not just the recovery of physiological indices. Hospitals and communities can explore the establishment of peer support groups so that patients with similar experiences can share their feelings and coping strategies, reduce their sense of isolation and stigma by “normalizing” their experiences, and support them in rebuilding their positive self-identity.⁴³

Regarding role function factors, this study revealed that the role predicament caused by role internalization and role responsibility conflict among esophageal cancer patients is one of the important reasons for their food avoidance. Our participants had experienced extensive social isolation caused by dietary problems. Eating with others has become a source of anxiety and embarrassment for them. They are afraid of showing all kinds of embarrassment at the dinner table (such as dysphagia, choking cough, vomiting) or being different because they need a special diet. These factors prompted them to take the initiative to avoid family dinners and friends. In this context, food avoidance has become a defense mechanism to protect self-esteem and reduce social psychological burden. Previous studies have shown that social withdrawal is a common phenomenon in patients with chronic diseases and that it further aggravates negative emotions, which further inhibits appetite and eating behavior.⁴⁴ In contrast to social avoidance, some participants, especially those who still have to undertake work or family responsibilities, choose to voluntarily give up regular and carefully prepared diets to minimize the interference of diseases on their work rhythm and family life. In the face of role conflict, patients choose to fulfill their role responsibilities rather than health needs by simplifying or omitting their diet.⁴⁵ In view of the above problems, community workers can encourage mock dinners in groups to alleviate their anxiety about eating in public and can also guide patients’ families and friends to engage in reunion activities that are not centered on “eating”, such as walking, playing chess and listening to music together. In addition, we strongly call for the development of convenient, efficient and noninterfering nutritional support methods, such as promoting portable, high-energy and ready-to-eat medical nutritional supplements, so that they can supplement nutrition quickly.

In regard to interdependence factors, the supervision of relatives and friends, lack of follow-up and economic burden constitute external factors for patients in terms of food avoidance behavior, which aggravates the practical dilemma of patients’ diet management. First, caregivers (usually spouses or children) often take over the right to purchase and cook foods, while patients enter a state of passive acceptance and lose the right to choose their own diet. This kind of excessive supervision aggravates the psychological pressure of patients and strengthens their food avoidance behavior.⁴⁶ Therefore, nutrition education and guidance must be aimed at patients and their main caregivers at the same time to promote shared decision-making on food. Second, the participants generally described the lack of professional nutrition follow-up after discharge. When patients face new dietary challenges at home, they feel helpless and confused and finally return to the simplest strategy, that is, avoidance. This confirms much evidence of the importance of continuous care in oncology, especially emphasizing the fragility of the transition from hospital to family.⁴⁷ Consequently, nutritional support should be included in the standard follow-up plan, and nutritional status screening and consultation should be conducted on a regular basis via telephone or online platforms. Apps and applets can also be developed and popularized so that patients can report their eating difficulties at any time and consult clinical dieticians online to obtain individualized feedback.⁴⁸ Finally, the high cost of treatment and the decrease in income caused by diseases cause many families to face heavy economic pressure.⁴⁹ In this context, high-quality protein, fresh fruits and vegetables and special medical nutritional supplements were often the first items to be cut. Patients and families were forced to switch to cheaper and often less nutritious foods, which increased the risk of malnutrition. Medical workers need to have the ability to provide low-cost, nutritious diet programs and make full use of medical insurance policies. In addition, patients facing serious economic difficulties should be referred to medical social workers in time to help them apply for government subsidies or charitable assistance, thus alleviating the economic pressure from the root.

Implications for Clinical Practice

Our findings highlight that participants’ actual diets were often monotonous, largely limited to soft staples (porridge, rotten noodles, steamed buns) and well-cooked vegetables, with minimal meat intake. Therefore, dietary advice must be grounded in patients’ current consumption patterns. Rather than merely listing foods to avoid, interventions should provide practical, culturally acceptable guidance on enhancing the nutritional quality of accepted foods, such as enriching porridge with protein powder. Additionally, appropriate guidance on using nutritional supplements is crucial when symptoms are severe. Clinical practice can go beyond traditional methods to provide comprehensive and proactive nutritional support. Healthcare workers should use standardized tools to regularly assess changes in taste, swallowing function, and overall nutritional status, rather than merely responding to weight loss. Furthermore, personalized nutritional counseling is needed to address patients’ fears and misunderstandings, allowing them to express their frustration and build self-efficacy in diet management. Medical staff should also connect patients with peer support groups to help resolve social role conflicts and encourage social reintegration. Finally, nurses should ensure the continuity of care by establishing structured post-discharge follow-ups and regularly screening patients for economic difficulties related to treatment and diet.

Limitations

This study provides unique insights into the food avoidance behavior of patients with esophageal cancer. However, several limitations should be noted. First, participants were recruited from a single tertiary hospital in central China, which may introduce selection bias. Their experiences might not fully represent those of patients in other cultural or geographic regions. Second, the study excluded patients with severe physical illness or psychological disorders who were unable to participate in the interviews. It is highly likely that these individuals experience even more severe and complex food avoidance behaviors. Third, the interviews focused exclusively on the patients’ perspectives. Incorporating the views of primary caregivers could provide additional, valuable insights into family dietary dynamics and caregiver burden. Finally, as a cross-sectional qualitative study, we captured a specific timeframe. Future research should employ longitudinal qualitative or mixed-methods designs to track how dietary experiences and coping strategies evolve throughout the cancer survivorship trajectory.

Conclusions

Guided by the Roy Adaptation Model, this study conducted interviews with 16 patients and identified four categories and ten subcategories, including physiological function factors, self-concept factors, role function factors, and interdependence factors, to further clarify the factors influencing food avoidance behavior in patients after esophagectomy. The findings suggest that food avoidance behavior reflects the interaction of physiological distress, psychological and social challenges, and inadequate system support, with potential implications for nutritional outcomes. Given the single-center and cross-sectional qualitative design, the findings should be interpreted within the specific clinical and sociocultural context of the study population. Future research should focus on developing multifaceted dietary management programs based on these findings, and medical institutions should establish multidisciplinary teams to strengthen nutritional support and the care environment.

Funding Statement

This research received no external funding.

Data Sharing Statement

The data that support the findings of this study are available from the corresponding author, Wan Ling Lee, upon reasonable request.

Ethics Approval

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of Henan Cancer Hospital (No. 2024282).

Consent Statement

Informed consent was obtained from all individual participants included in the study. All participants also provided written informed consent for the publication of their anonymized responses, direct quotations, and the individual demographic and clinical details presented in Table 1.

Disclosure

The authors have no relevant financial or non-financial interests to disclose.