Motivation and challenges in decision making for gastrostomy tube placement and use: a focus on patients with cancer and dysphagia

Abstract

Background

Gastrostomy tube placement is the preferred modality for long-term nutritional management in individuals with oral feeding disorders. However, acceptance of this intervention is often impeded by reluctance to discontinue oral feeding, concerns about increased caregiver burden, and apprehension regarding life prolongation with diminished quality of life. These factors may generate decisional conflict, negatively affecting patients’ physical and psychological well-being and treatment outcomes. In this study, we aimed to explore the facilitators and barriers influencing gastrostomy-related decision-making among patients with cancer and dysphagia, providing a theoretical and empirical basis for developing culturally tailored decision aids and structured communication pathways.

Methods

A qualitative descriptive design was employed. In-depth one-on-one interviews were conducted with 18 patients with cancer and dysphagia who had engaged in gastrostomy decision-making at two tertiary hospitals in Fujian Province, China. The transcripts were coded using NVivo and analyzed using conventional content analysis.

Results

Three overarching themes with seven subthemes were identified. Theme 1 included decision-making motivation, which comprised three subthemes: disease perception and survival needs, supportive communication from healthcare providers, and support from family members and peers. Theme 2 included decision-making challenges, which included two subthemes: emotional-rational dissonance and insufficient decision-making information. Theme 3 comprised decision-making optimization and included two subthemes: enhancing the transparency of gastrostomy-related information and improving the efficacy of healthcare provider-patient communication.

Conclusions

Effective healthcare provider-patient communication and support from family members and peers emerged as key facilitators of decision-making regarding gastrostomy tube placement, whereas emotional-rational conflicts and informational deficits constituted major barriers. Future efforts should focus on developing culturally tailored, multimodal decision aids integrating paper and digital formats, establishing structured communication pathways that integrate these tools, and strengthening family-peer support while ensuring that autonomous decisions are aligned with patient values.

Clinical trial number

Not applicable.

Background

Dysphagia is a swallowing disorder characterized by difficulty in the safe and efficient movement of food or liquids from the oral cavity to the stomach due to impairments in the oral, pharyngeal, and esophageal phases of swallowing [1]. The reported global prevalence of dysphagia ranges widely from 11.4% to 84.0% [2], whereas the prevalence in China is approximately 38.7% [3]. Dysphagia is a frequent complication in patients with cancer, resulting from invasive tumor growth affecting the upper aerodigestive tract, as well as from treatment modalities such as surgery, radiotherapy, and chemotherapy, which may compromise the anatomical structures and physiological functions involved in swallowing [4]. In some patients, dysphagia may persist for a prolonged period [5], and may increase the incidence of complications such as malnutrition, aspiration pneumonia, and dehydration, leading to prolonged hospital stays and increased medical costs [6, 7]. Malnutrition is among the most severe complications of cancer-related dysphagia. Approximately 20%–30% of patients with cancer die from malnutrition rather than from the malignancy itself [8]. The ESPEN guideline on clinical nutrition in cancer recommends that nutritional therapy be initiated before severe malnutrition develops [9]. Accordingly, effective nutritional support is essential for optimizing clinical management and improving outcomes in patients with cancer who have dysphagia [10, 11].

A gastrostomy tube (G-tube) is a feeding tube inserted directly into the stomach through the abdominal wall, providing a conduit for long-term enteral nutrition in patients with impaired oral intake [12]. Currently, G-tubes are predominantly placed using minimally invasive percutaneous techniques (e.g., percutaneous endoscopic or radiological gastrostomy) rather than open surgical approaches, and have the potential for long-term home enteral nutrition [13]. Numerous studies have demonstrated that gastrostomy can reduce the incidence of minor complications [14], improve nutritional status and quality of life [15], and decrease the rate of hospitalization related to disease-associated complications [16]. Nevertheless, patients’ decisions regarding G-tube placement are influenced by multiple factors [17–19]. Research involving patients with motor neuron disease [20, 21], amyotrophic lateral sclerosis [22], and older patients already receiving tube feeding [23] indicates that disease progression, worsening dysphagia, and deteriorating nutritional status often prompt consideration of gastrostomy. Conversely, reluctance to relinquish oral intake, concerns about increasing caregiver burden, and fears of prolonging life with poor quality frequently serve as barriers to accepting the procedure. Such dilemmas may lead to decisional conflict, emotional distress, and delays in treatment [22]. However, to date, little research has examined the factors influencing decision-making regarding G-tube placement among patients with cancer and dysphagia. Furthermore, Confucianism, as the dominant cultural ideology in China, emphasizes family-centric values, with family members often playing an active role in medical decision-making and considering the patient’s well-being as a collective responsibility [24, 25]. Within this cultural context, while the patient remains the ultimate decision-maker, family involvement is deeply embedded in the decision-making process. This contextual feature may uniquely shape how Chinese patients with cancer and dysphagia approach decisions regarding G-tube placement.

Providing appropriate decision support can help alleviate decisional conflicts. Patient decision aids (PDAs) are widely used tools that support shared decision-making by presenting clear decision options, evidence-based information on the benefits and risks, and structured guidance to help patients gradually clarify their values and preferences [26]. Previous studies have shown that PDAs can reduce decisional conflicts and improve patient satisfaction with decision-making consultations [27]. Therefore, systematically identifying and clarifying the factors influencing decision-making is a critical prerequisite for developing effective, targeted PDAs.

Accordingly, in this study, we aimed to delineate the decision-making attitudes of Chinese patients with cancer and dysphagia toward G-tube placement and to identify the facilitators and barriers influencing their decisions, thereby providing a foundation for the development of culturally appropriate, localized PDAs for this population.

Methods

Study design

This study was conducted within a constructivist-interpretivist paradigm, employing a qualitative methodology to explore the decision-making experiences of patients with cancer and dysphagia. The constructivist-interpretivist paradigm posits that individuals’ understanding of reality and the meanings they ascribe to experiences are constructed subjectively within specific sociocultural contexts [28]. A qualitative descriptive research design enabled the researchers to identify factors that facilitate or hinder patients’ decision-making processes, providing empirical evidence to inform the development of targeted PDAs for G-tube placement in patients with cancer and dysphagia. Ethical approval was obtained from the Ethical Committee of Fujian Medical University (Fuyi Ethics [2023] No. 127). This study was prepared in line with the Consolidated criteria for reporting qualitative research (COREQ) checklist [29].

Study setting and participants

The study was conducted between June 2023 and February 2024 at two Grade A tertiary hospitals in Fujian Province, China. Purposive sampling was used to select participants based on the study’s objectives. The inclusion criteria were as follows: (1) age ≥ 18 years; (2) a confirmed diagnosis of cancer, with concurrent dysphagia as determined by the attending physician in accordance with the diagnostic criteria defined in the Chinese Guidelines for Rehabilitation Management of Dysphagia (2023 Edition) [30]; and (3) experience with decision-making regarding G-tube placement (including those who had accepted or declined G-tube placement). The exclusion criteria were as follows: (1) Barthel Index score ≤ 40; (2) impaired audio-visual abilities, communication disorders (i.e., those who are unable to communicate in Chinese and cannot accurately answer questions related to the research objectives), or mental disorders; (3) inability to complete the interview independently; and (4) participation in research projects that could influence the study outcomes. Maximum variation sampling was employed to ensure diversity in age, education, and economic status, thereby capturing a broad range of decision-making experiences.

Data collection

The research team developed an interview guide based on the Decisional Needs Assessment.

in Populations [31], covering the decision type, decision stage, decision conflict, knowledge and expectations, and decision support and resources.

Prior to the formal interviews, two participants who met the inclusion and exclusion criteria and had provided written informed consent were selected for the pre-interviews. The interview guide was then revised according to the pre-interview context and through repeated discussions among the researchers. Table 1 presents the formal interview process.

Table 1.

Interview guide

Items of Interview
1. Are you aware of your current medical condition? Do you know how to address the issue of being unable to eat orally?
2. How did you approach the decision of whether to use a gastrostomy? What was your specific decision-making process like?
3. How did you feel when you made this decision?
4. Were you hesitant or resolute in your decision? What factors made it difficult for you to decide?
5. What factors could help you in making this decision?
6. Can you describe how you obtained information about gastrostomy? How did you learn about it?
7. Who was involved in making this decision with you? What kind of support did you receive?
8. Could you share your perspective on gastrostomy? What role do you hope it will play for you?
9. During your decision-making process, what kind of support or assistance would you most prefer from us, and in what form?
10. If another patient faced a similar situation, what would you say to them? What advice or suggestions would you offer?
11. Is there anything else you would like to add regarding your choice about gastrostomy?

Data were collected through semi-structured interviews. Prior to study commencement, the researcher participated in physician ward rounds as nursing postgraduate students. This phase constituted only clinical care activities and did not involve any research-related contact or assessment. For patients who met the inclusion criteria, the researcher explicitly transitioned roles and approached patients solely as researchers, providing detailed explanations of the study purpose, interview procedures, confidentiality measures, and the right to withdraw voluntarily. This ensured that patients could make independent decisions without time pressure or inducing factors. Only after obtaining the patient’s written informed consent did the researcher engage in brief, non-directive communication with the patient to establish initial rapport and schedule the interview time and location. Prior to each interview, the researcher systematically reviewed the patient’s medical records and nursing shift reports and consulted with the primary nurse to comprehensively assess the patient’s condition. This confirmed the absence of acute symptoms such as fever, vomiting, or dyspnea, stable vital signs, and that no diagnostic or therapeutic procedures were scheduled for at least 2 h following the interview. The researcher then used an open-ended question to ask the patient: “Do you feel comfortable enough to talk with me for about 30 minutes?” The interview was initiated only if the patient provided a clear affirmative response and all the above clinical conditions were met.

During formal interviews, a quiet conference room was used whenever possible; however, some patients with cancer were interviewed at their bedsides due to physical weakness, fatigue, or other limitations. In such cases, the researcher ensured privacy by drawing the bedside curtain and politely asking family members and visitors to step aside temporarily, leaving only the patient and the interviewer present. Each interview was conducted by a single nursing graduate with systematic training in qualitative research. The interviewer first collected basic demographic and clinical information using a general information questionnaire and then followed the interview guide while simultaneously recording the sessions. The interviews prioritized patient narratives. When participants diverged in their descriptions, timely clarification was provided, and if discussions strayed from the study objectives, structural questions were used to redirect the conversation. Patients were encouraged to fully express themselves, avoiding leading questions or suggestions. Nonverbal cues, including facial expressions, body language, tone of voice, and emotional changes, were closely observed. These observations were recorded as field notes immediately after each interview to supplement the interview transcripts. The field notes were primarily used to contextualise participants’ verbal responses and to provide important contextual support for the researcher’s analytic process. Each interview lasted between 20 and 30 min.

Throughout the study, the researcher documented reflections after each interview using a reflection log. This reflexive practice involved examining the researcher’s own conceptual perspectives, explicit and implicit assumptions, and existing values, as well as assessing how these factors may have influenced the research findings. The reflection log also served to record specific issues that arose during interviews, such as whether the researcher unintentionally used leading questions, responded appropriately to participants’ emotional reactions, or encountered environmental distractions. By identifying these issues, the researcher could consciously improve interviewing techniques in subsequent sessions, thereby ensuring the quality of data collection.

All personally identifiable information was removed from the data prior to analysis to ensure confidentiality. Each participant was assigned a unique numerical identifier by the first researcher (Y.W.), and the key linking identifiers to participant identities was stored separately in a password-protected file that was only accessible to the principal investigator. Observed nonverbal information, including facial expressions, was documented in field notes and contained no identifying information. All electronic data were stored on encrypted devices accessible only to the research team.

Data analysis

Data collection and analysis were conducted iteratively. Recruitment continued until data saturation was reached, defined as the point when no new codes or themes emerged from subsequent interviews [32]. Within 24 h of each interview, the interviews were transcribed verbatim by the third researcher (S.C.). Following transcription, another graduate nursing student (Y.Y.) with systematic training in qualitative research independently verified all transcripts against the original audio recordings to ensure accuracy. Any identified discrepancies were discussed and resolved through consensus between the two researchers. The verified transcripts and field notes were imported into NVivo 12 for analysis, while Microsoft Excel 2019 was used to input and organize the demographic information of the participants. Descriptive statistics were employed to analyze the demographic data of the participants, and traditional content analysis was used for the interview data. The data analysis process incorporated triangulation and member checking, focusing primarily on the explicit and descriptive content of the interview data. The specific steps were as follows: First, meaningful statements in the data were extracted and summarized to form units of analysis. Second, researchers (S.C. and Y.Y.) independently and repeatedly read the original transcripts two to three times to familiarize themselves with the depth and breadth of the data and to develop an overall understanding of patients’ decision-making experiences. Third, two researchers independently read the text, line by line annotating significant ideas and concepts, and conducted open coding. When disagreements arose—such as assigning different codes to the same text segment or differing interpretations of code definitions—the two researchers discussed and negotiated until a consensus was reached. If a consensus could not be achieved through discussion, a third project leader with extensive qualitative research experience (J.Z.) was consulted to make the final decision after joint deliberation. Fourth, a series of codes was compared and grouped to form subcategories, which were then summarized into subthemes, and general categories were summarized into themes. This iterative process allowed themes and subthemes to be revised or expanded as new data emerged. Fifth, the data were further organized and refined once the thematic structure was established, and representative excerpts were selected to support each theme, thereby clarifying the connections between the findings and the underlying data.

Discussions were held among all members of the research team to achieve consensus on the extracted themes and supporting excerpts to enhance the credibility of the findings. Three participants were purposively selected to review the study findings. The researcher (Y.W.) identified participants using unique numerical identifiers assigned during data collection. The key linking identifiers to participant identities were stored in an encrypted file accessible only to the first researcher (Y.W.). To determine whether the researchers’ interpretations accurately reflected participants’ experiences, each participant reviewed only the themes, subthemes, and excerpts derived from their own interview. If a participant raised differing views, the researchers would discuss and revise the findings based on the participant’s feedback until a consensus was reached.

Results

Saturation was achieved after interviewing 17 participants, as no new codes or themes emerged from the analysis. An additional patient was recruited to rigorously verify saturation; analysis of this interview confirmed no new themes. Subsequently, the preliminary thematic structure was reviewed by clinicians and nurses specializing in oncology and digestive endoscopy, who validated the breadth and depth of the themes and confirmed that no additional themes or relationships were present. Participant recruitment was therefore concluded.

A total of 18 patients, comprising 14 males and 4 females, with a mean age of 64.44 ± 12.35 years and ranging in age from 40 to 90 years, participated in the study. The cohort included ten cancer types, including tongue cancer, nasopharyngeal carcinoma, lung cancer, pancreatic cancer, oral cancer, esophageal cancer, hypopharyngeal cancer, gastric cancer, parotid gland cancer, and oropharyngeal cancer. Among the participants, two declined G-tube placement, two underwent endoscopic gastrostomy, and 14 received computed tomography-guided gastrostomy. Additional demographic and clinical characteristics are presented in Table 2.

Table 2.

Basic characteristics of the participants

Number	Sex	Age (y)	Marital status	Education	Employment status	Household income per capita (¥/month)	Medical insurance	Phase of treatment	Surgical methods	Diagnosis of disease	BMI (kg/m2)
1	Male	57	Married	Associate	Employed	3000–4999	Rural insurance	Anticancer	Endoscope	Tongue cancer	20.52
2	Male	40	Married	Secondary	Unemployed	≥ 5000	Rural insurance	Anticancer	Endoscope	Nasopharyngeal carcinoma	18.56
3	Female	61	Married	Primary	Employed	1000–2999	Rural insurance	Palliative care	CT guidance	Lung cancer	15.61
4	Male	80	Married	Primary	Retired	3000–4999	Employee insurance	Anticancer	CT guidance	Pancreatic cancer	17.30
5	Male	57	Married	Middle	Unemployed	≥ 5000	Resident insurance	Anticancer	CT guidance	Oral cancer	21.72
6	Male	90	Married	Primary	Unemployed	1000–2999	Rural insurance	Anticancer	CT guidance	Esophageal cancer	19.15
7	Male	64	Married	Middle	Retired	3000–4999	Employee insurance	Anticancer	CT guidance	Hypopharyngeal cancer	22.04
8	Male	75	Married	Primary	Employed	1000	Rural insurance	Anticancer	CT guidance	Gastric cancer	17.72
9	Male	77	Married	Secondary	Retired	1000–2999	Employee insurance	Anticancer	CT guidance	Esophageal cancer	21.30
10	Male	58	Married	Secondary	Employed	1000–2999	Rural insurance	Anticancer	CT guidance	Esophageal cancer	24.45
11	Female	57	Married	Bachelor’s	Retired	≥ 5000	Resident insurance	Anticancer	CT guidance	Lung cancer	18.81
12	Male	65	Married	Secondary	Retired	3000–4999	Employee insurance	Anticancer	CT guidance	Parotid gland cancer	18.93
13	Male	70	Married	Primary	Retired	3000–4999	Rural insurance	Anticancer	CT guidance	Oral cancer	22.49
14	Female	46	Married	Bachelor’s	Employed	≥ 5000	Employee insurance	Palliative care	CT guidance	Lung cancer	-
15	Male	65	Married	Associate	Retired	3000–4999	Employee insurance	Anticancer	CT guidance	Parotid gland cancer	13.49
16	Male	75	Married	Secondary	Retired	3000–4999	Employee insurance	Anticancer	CT guidance	Oropharyngeal cancer	26.20
17	Male	69	Married	Primary	Employed	1000–2999	Rural insurance	Anticancer	Decline	Esophageal cancer	19.43
18	Female	54	Married	Secondary	Unemployed	3000–4999	Resident insurance	Anticancer	Decline	Oral cancer	27.34

Note: CT: Computed tomography, BMI: Body mass index; “-” indicates that BMI was not measured for this participant

Table 3 presents the three themes and seven subthemes identified through data analysis.

Table 3.

Themes and subthemes

Themes	Subthemes	Citation
Decision motivation	Disease perception and survival needs	Due to a persistent inability to swallow, I experience vomiting and can only consume liquids. This has led to constant hunger and inadequate oral intake, resulting in significant weight loss of over 10 kg. Consequently, my physician has recommended a gastrostomy. (P12)
	Supportive communication from healthcare providers	I was initially concerned that the gastrostomy tube would be permanent. The doctor explained that since I could not eat, there was a risk of stomach atrophy, and that this tube was temporary. It could be removed once I recovered the ability to eat on my own. I was reassured to learn that it was not a permanent solution. (P12)
	Support from family members and peers	After the doctor talked to me, I was still hesitant. I consulted with my family at that time, and they agreed with me to undergo G-tube placement, so I chose to undergo it. (P16)
Decision challenge	Emotional-rational dissonance	The doctor said that my esophageal wall is too thin to continue eating by mouth; otherwise, the esophagus could rupture like a water pipe. Rationally, I know gastrostomy is currently the best option for improving nutrition, but it would be a heavy financial burden on my family. I am afraid of bringing them more pressure. (P10)
	Lack of decision-making information	Before gastrostomy, the time available to make decisions was relatively short. We approached the procedure feeling very worried and nervous. Our knowledge was extremely limited; I did not know that after this (gastrostomy), I would not be able to eat by mouth at all. (P4)
Decision optimization	Enhancing the transparency of gastrostomy-related information	At that time, the doctor only gave us a general idea, so we went to determine how the gastrostomy was performed, the risk of surgery, and the specific postoperative care. (P2)
	Improving the efficacy of healthcare provider-patient communication.	Doctors are too busy; I hope to be provided with materials related to gastrostomy to let me study on my own first. (P15)

Decision motivation

Disease perception and survival needs

The patient’s strong perception of an immediate threat to life was a primary driver of the decision to undergo G-tube placement. The participants reported that worsening dysphagia with disease progression resulted in inadequate nutritional intake and significant weight loss, which increased their fears about survival. Based on the recommendations of healthcare providers, patients came to understand gastrostomy as a long-term enteral nutrition strategy capable of addressing their most fundamental survival needs, which thereby became a central factor in decision-making.

Nutritional crisis and physical depletion resulting from dysphagia directly precipitated patients’ perception of existential threats.

One participant described: Due to a persistent inability to swallow, I experience vomiting (vomiting is the patient’s subjective description. After confirmation, it was choking cough caused by reflux) and can only consume liquids. This has led to constant hunger and inadequate oral intake, resulting in significant weight loss of over 10 kg. Consequently, my physician has recommended G-tube placement (P12)

The original nutritional support method caused discomfort in the patient’s throat, which prompted the patient to choose a gastric stoma tube.

One participant stated, I’m not feeling very comfortable with the nasogastric tube I’m using now. It presses on my nasal cavity and throat, causing a strange sensation of something being stuck there. (P17)

As another participant stated, The doctor told us that there is a lot of phlegm in my throat due to the stimulation of this naso-intestinal tube. I always have choking coughs and have developed pneumonia. I can no longer use the naso-intestinal tube. If G-tube is used, there might be less phlegm in the throat, and I would feel more comfortable. (P9)

The goal of life extension is central to patient decision-making, and gastrostomy is perceived as necessary to achieve this outcome.

One participant stated, We just want to cure the disease, delay its progression, and essentially preserve life, mainly to maintain life (P3)

Supportive communication from healthcare providers

Patients expressed reluctance toward G-tube placement due to concerns about its perceived permanence. However, acceptance increased when healthcare providers clearly explained that the tube was temporary and could be removed either once dysphagia improved or at any time at the patient’s request.

I was initially concerned that the G-tube would be permanent. The doctor explained that since I could not eat, there was a risk of stomach atrophy (in fact, long-term reduction in food intake can cause the body to develop a sense of fullness prematurely, so individuals may subjectively feel that their stomachs have shrunk.), and that this tube was temporary. It could be removed once I recovered the ability to eat on my own. I was reassured to learn that it was not a permanent solution. (P12)

Support from family members and peers

People’s behavioral and psychological development responses were strongly influenced by their social environment, and clinical decision-making does not occur in isolation. In this study, family support emerged as an important factor in the decision-making processes of patients. Patients reported that after receiving information from healthcare providers, they typically consulted with family members. The support and encouragement from family members helped alleviate their decisional burden when considering G-tube placement and strengthened their confidence. Additionally, patients mentioned that the experiences of other patients were also an influencing factor. Some participants noted that witnessing positive outcomes in fellow patients helped reduce their uncertainty and fear about the procedure, making the decision-making process more manageable.

When patient well-being was prioritized over financial considerations, family support became a central pillar in patient decision-making.

Both my daughter and son agreed with the doctor’s recommendation to have a G-tube placed. Although we considered the financial burden, we determined that financial resources were available. My children hope that I can get better, and they still support me in doing so. (P10)

Family support was one of the facilitating factors that helped patients overcome their hesitancy and make a decision.

After the doctor talked to me, I was still hesitant. I consulted with my family at that time, and they agreed with me to undergo G-tube placement, so I chose to undergo it. (P16)

Observing positive outcomes among peers could further reduce anxiety and support informed decision-making.

At that time, I did not hesitate to make the decision. I saw that someone in the next ward had done it. I went to learn about it and felt that the effect was ok after doing it, so we also did it. (P14)

We have set up a WeChat group where all the patients who have undergone gastrotomy are included. We can see that some patients have made good recoveries, while others encounter issues with care. In such cases, the doctors will provide solutions. (P16)

Decision challenge

Emotional-rational dissonance

Healthcare providers typically presented gastrostomy from a biomedical perspective, emphasizing its role in providing nutritional support, preventing complications, and prolonging survival. At the same time, patients considering this decision weighed concerns about surgical risks, postoperative quality of life, and broader contextual factors—such as socioeconomic conditions, health literacy, and deeply embedded cultural norms in China. These two sets of considerations placed patients in a dilemma: they understood the medical necessity of gastrostomy as explained by their healthcare providers, yet they were also troubled by personal concerns regarding quality of life, financial burden, and the emotional implications of an altered body image.

Some patients acknowledged the medical necessity of gastrostomy, but faced substantial conflict due to family financial pressures.

One participant explained: The doctor said that my esophageal wall is too thin to continue eating by mouth; otherwise, the esophagus could rupture like a water pipe (the actual meaning is that the patient’s esophageal cancer has invaded the deep layer of the esophageal wall, causing the local wall structure to be replaced by tumor tissue and become fragile, with a risk of perforation.) Rationally, I know G-tube placement is currently the best option for improving nutrition, but it would be a heavy financial burden on my family. I am afraid of bringing them more pressure. (P10)

Overall, patients experienced multiple, overlapping conflicts during decision-making regarding G-tube placement. Although they recognized the therapeutic benefits and nutritional importance of the procedure, they remained apprehensive about the surgical risks and potential deterioration in quality of life. As an invasive intervention, gastrostomy threatened the patients’ sense of bodily integrity and evoked feelings of shame. Moreover, shared meals held significant social and emotional meaning; therefore, the inability to eat orally resulted in deeper cultural loss and emotional deprivation.

As one participant noted: Although the doctor explained that gastrostomy could resolve my food-aspiration pneumonia (This sentence merely represents the patient’s inaccurate summary of the doctor’s conversation. There is no direct and high-quality evidence indicating that the gastrostomy tube can prevent aspiration pneumonia. The doctor merely suggested this as a feeding option in the context of the patient having aspiration pneumonia at that time), I remained apprehensive about the surgical risks and potential complications, such as wound infection and tube dislodgement. My already compromised health makes me fear that I cannot tolerate the procedure. While I recognize its nutritional benefits, I find it psychologically unacceptable, as having a stoma would affect my normal life. I worry that the surgery would ultimately reduce my quality of life. (P2)

As another participant described: Although my current nutritional condition is not very good, and the fact that this nasogastric tube is sticking out is not very appealing, I have undergone multiple treatments so far and have also had a venous infusion port and nasogastric tube implanted in my body. I don’t want my body to have any more wounds. (P17)

Structural and systemic factors further complicated patients’ decision-making. Low medical insurance reimbursement rates for cross-regional treatment increased patients’ financial burden, limited educational attainment hindered their ability to fully understand and evaluate medical information, and the prolonged treatment course added to their stress—all of which collectively influenced their decisions.

As one participant noted: The doctor said that a nasogastric tube is no longer an option and that G-tube placement is the best choice. We came from far away and would need to stay for several months. We do not understand these treatments, and the financial pressure in rural areas is very high. The reimbursement rate from our county is very low. (P9)

As another participant described: One is the hassle of the surgery, and the other is the cost. Our family is already facing some financial difficulties. Now I have to undergo surgery, and I actually borrowed a lot of money from relatives and friends before. I’m worried about the cost issue. (P18)

Lack of decision-making information

Patients perceived that healthcare providers allocated insufficient time to deliberate and decide on G-tube placement, resulting in limited understanding of the operation before its implementation. Overall, pertinent information regarding the G-tube placement technique, benefits and risks, postoperative nutrition, and nursing care was perceived as insufficient. Some patients sought additional information online after consulting with physicians; however, the decision-making process remained challenging.

The lack of information caused by limited decision-making time contributed to unexpected and persistent distress, particularly regarding postoperative restrictions on oral intake in the short time period. The patient was unaware that after the G-tube placement, the digestive tract was in an edematous state, meaning that oral feeding might cause vomiting or wound infection. The patient’s symptoms of difficulty in swallowing have not yet been relieved. Continuing to eat orally increases the risk of reflux, choking and coughing, which can lead to aspiration. Thus, it was necessary to temporarily be in a fasting state.

As one participant noted: Before G-tube placement, the time available to make decisions was relatively short. We approached the procedure feeling very worried and nervous. Our knowledge was extremely limited; I did not know that after this (G-tube placement), I would not be able to eat by mouth at all. (P4)

When physicians provided insufficient information, patients turned to online resources, but the uncertainty and complexity of the information often aggravated their confusion.

When I first heard about G-tube placement, I did not even know how to spell the word. I searched online to learn how the procedure was performed, the surgical risks, and postoperative care. We did not know how to prevent complications; I was quite confused and hesitated to do it.(P2)

Patients’ sense of uncertainty regarding the specific risks of surgery and anesthesia emerged as a significant factor contributing to the difficulty in making informed decisions.

Given my age, we were concerned about the risks of general anesthesia and surgical complications, and whether my body could tolerate them. Therefore, when the doctor said we needed to make a decision about G-tube placement, we were uncertain. (P13)

Decision optimization

Enhancing the transparency of gastrostomy-related information

Patients making informed decisions about G-tube placement required a comprehensive understanding of its benefits and drawbacks, including surgical risks, postoperative complications, and nursing considerations, as well as fundamental knowledge of the perioperative period. Some participants reported that initial consultations provided only general information.

As one participant noted: At that time, the doctor only gave us a general idea, so we went to determine how the G-tube placement was performed, the risk of surgery, and the specific postoperative care. (P2)

Others indicated uncertainty regarding the procedure’s advantages and potential outcomes: After the doctor told me, I felt that I was not quite sure about the advantages and disadvantages of G-tube placement, and I did not know when the G-tube would be removed. (P4)

Improving the efficacy of healthcare provider-patient communication

Patients expressed a desire for detailed, authoritative communication with healthcare providers experienced in gastrostomy.

I think if possible, I would like to have a more professional doctor who specializes in G-tube placement communicate with me, so that I can know more about it. (P9)

However, structural limitations in China, including a low physician-to-patient ratio and physicians’ heavy workloads, often constrained consultation time. Patients expressed a need for educational materials and preferences regarding their format.

One participant noted: Doctors are too busy; I hope to be provided with materials related to G-tube placement to let me study on my own first. (P15)

Another participant mentioned: I think it can be produced as a paper manual. Due to the age gap, older people like us are not very adept at using mobile phones, so a paper manual might be more convenient. It would be even better to combine the paper manual with an electronic video version, as this would make it easier to understand. (P3)

Discussion

This study identified key determinants influencing decision-making regarding G-tube placement among patients with cancer and dysphagia. Disease perception and survival needs, supportive healthcare communication, and familial-peer support emerged as primary facilitators, whereas emotional-rational dissonance and insufficient decision-making information constituted the main barriers. These findings highlight the complex interplay of factors affecting G-tube placement decisions in this population. Given the growing emphasis on patient-centered shared decision-making in contemporary clinical practice, these results underscore the need for the development of tailored decision-support strategies aligned with this paradigm. Decision support refers to intervention measures that provide accurate information, clarify personal values, and facilitate communication to meet patients’ decision-making needs. It can effectively improve the quality of decision-making [33]. By adapting treatment decisions to individual patient needs, fostering active participation in medical decision-making, and maintaining collaborative patient-provider relationships, improved health outcomes may be achieved [34]. This study lays the foundation for future interventions aimed at supporting decision-making among patients with cancer and dysphagia, highlighting the critical role of shared decision-making.

Disease perception and survival needs were identified as the core drivers of decision-making. The central decision-driving mechanism uncovered in this study closely aligns with the Health Belief Model [35]. Our findings demonstrate that the primary motivation for patients with cancer and dysphagia to undergo G-tube placement stems from their perception of survival threats and the need to sustain life. This perception is specifically manifested in two ways: first, as progressive loss of oral feeding ability leads to inadequate nutritional intake, physical manifestations such as significant weight loss and persistent hunger heighten patients’ awareness of their vulnerability to nutritional depletion, reflecting perceived susceptibility; second, patients recognize that the inability to eat may have life-threatening consequences, reflecting perceived severity. Based on the current study, these factors were identified as important influences on patients’ decisions to pursue G-tube placement.

Supportive healthcare communication and familial-peer support are critical auxiliary factors in decision-making regarding G-tube placement among patients with cancer and dysphagia. According to social ecological systems theory [36], individuals are closely interconnected with their external environment, which can be categorized into micro-, meso-, and macro-systems based on their degree of influence. The microsystem includes social relationships directly related to the individual, with social support forming a central component [37]. Consistent with the social ecological systems framework, the findings of this study indicate that multifaceted social support—from family members, peers, and healthcare providers—can effectively support patients in their medical decision-making [38]. Healthcare provider-patient communication, in particular, is an important source of such support. A multidisciplinary team composed of specialist nurses, palliative care teams, and nutritionist teams can play a significant role in patient education, decision support, and goal setting to supplement the limited time of busy doctors and provide more comprehensive support. In shared decision-making, healthcare providers should provide patients with balanced information about the potential benefits and risks of each option based on the latest evidence-based research, and offer professional insights tailored to the patient’s unique clinical and personal circumstances—such as age, diagnosis, comorbidities, and treatment goals—to enable patients to make informed decisions aligned with their own values and preferences [38, 39] and reduce the potential negative impact of inaccurate information on patients’ decisions. Effective healthcare provider-patient communication is an essential foundation for this model [40], enabling patients to obtain comprehensive information about gastrostomy, alleviate treatment-related concerns, and ultimately facilitate informed decision-making.

Family support was also identified as a facilitating factor in the decision-making of patients. This finding aligns with the cultural context of China, where Confucian values place a strong emphasis on family involvement [25]. Within this “familism”-oriented culture, which prioritizes family harmony and collective interests [25], family members regard preserving the patient’s survival as their primary responsibility, often placing health needs above financial considerations. Notably, China’s unique medical communication model—where healthcare providers typically involve family members as key communication partners alongside patients—further reinforces the family’s central role in medical decision-making [41]. Evidence suggests that providing family support in a supportive and non-coercive manner can enhance patients’ sense of control and satisfaction with the final decision regarding gastrostomy [22]. This family-centered decision-making model reflects both the persistence of traditional cultural values and the distinctive characteristics of healthcare provider-patient interaction in Chinese medical practice [42]. However, family involvement in medical decision-making can also be a double-edged sword. While family members’ support provides emotional reassurance and practical assistance, it may also carry the potential for unintended pressure [43]. In some cases, even when patients’ personal preferences differ, they may feel obliged to align with family consensus [44]. Ensuring that the patient’s own voice remains central and that their decision reflects informed autonomous choice rather than compliance with familial expectations is a critical consideration in clinical practice, particularly in culturally family-oriented contexts such as China [45]. Therefore, healthcare providers must remain vigilant in safeguarding patient autonomy while recognizing the reality and potential benefits of the family-centered decision-making model.

Peer support is also important because cancer and post-treatment needs often limit patients’ social engagement, increasing their vulnerability to loneliness and helplessness, particularly when making treatment decisions. Informational and emotional support from peers can strengthen patients’ perceived control over their illness [38]. Therefore, optimal medical decision-making is achieved when healthcare teams, families, and peers collaborate to support patients in selecting the most appropriate treatment, while always prioritizing the patient’s own values and preferences [46, 47].

Decision-making is profoundly influenced by both emotions and rational considerations [48]. This study revealed an emotional-rational conflict in patients’ decisions about G-tube placement. Rationally, patients recognize their own nutritional status and the medical necessity of the surgery. However, they face several main challenges emotionally. First, in Confucian culture, the belief that “our bodies, from hair to skin, are bestowed upon us by our parents” reflects a deep-rooted value that emphasizes the body’s sacredness as a gift from one’s parents. Thus, any alteration to the body, such as undergoing G-tube placement, may be perceived as a violation of bodily integrity, potentially evoking feelings of shame or filial impiety. Second, concerns about postoperative quality of life and altered body image caused emotional distress. Third, worries about financial burden—exacerbated by disparities between urban and rural healthcare access and low cross-regional medical insurance reimbursement—added to patients’ emotional strain, as they feared imposing additional pressure on their families. These emotional factors often significantly influence patients, sometimes outweighing rational considerations and ultimately shaping their decisions. Therefore, healthcare professionals need to provide culturally sensitive psychological support throughout the entire process, from diagnosis to treatment, and offer effective decision-making tools to help restructure cognition and reduce feelings of shame and filial impiety. They should also include financial advisors within the medical team, systematically explain the medical insurance reimbursement policies to patients, assess out-of-pocket expenses, and assist in applying for economic assistance resources, such as foundation support, so as to help patients alleviate emotional distress and financial pressure, and more effectively handle complex medical decisions.

Lack of information about G-tube placement may hinder and even worsen decision-making dilemmas among patients. This study demonstrates that some patients with cancer and dysphagia have substantial knowledge gaps regarding the surgical procedure, its potential risks and benefits, postoperative dietary restrictions, and postoperative care. These gaps arise from the limited decision-making time and insufficient physician-patient communication. This finding is consistent with previous research indicating that the information patients currently receive about gastrostomy is generally insufficient, inaccurate, and inconsistent, thereby increasing the complexity and difficulty of their decision-making [18]. Although patients generally recognize that gastrostomy can supplement nutrition, prolong life, and meet basic survival needs [49]—thereby increasing psychological acceptance of the procedure—poor understanding of the surgical risks, medical costs, and caregiving burdens frequently leads to excessive anxiety [22]. According to the theory of bounded rationality, completely rational decision-making rarely exists in practice, as decision-makers are constrained not only by external factors such as time, information, and technology but also by internal psychological biases [50]. In this study, such information gaps appear to trap patients in a vicious cycle of “information insufficiency-psychological burden-decision-making difficulty,” which is reinforced by negative emotions such as anxiety and fear.

This study indicates that patients with cancer and dysphagia often feel inadequately informed about G-tube placement. Therefore, enhancing the transparency of gastrostomy-related information may serve as an important approach to improving patients’ understanding and optimizing their decision-making process. Previous research has employed serious games, a kind of interactive digital game designed for educational purposes, to present the side effects of different treatment options and their impact on quality of life to patients with localized prostate cancer, thereby assisting patients in selecting treatment strategies aligned with their personal preferences [51]. Another study used VR technology to help patients with chemotherapy understand and experience the chemotherapy process, improving treatment cognition and reducing anxiety levels and systolic blood pressure [52]. These tools have demonstrated the potential to engage patients and present complex medical information in accessible ways. However, their applicability depends heavily on the technological literacy and familiarity of patients with digital interfaces. Patients with cancer and dysphagia who face decisions about G-tube placement are often older and have lower educational levels [53, 54]. These demographic characteristics may limit the applicability of gamified or highly virtualized decision-support tools for this population, as such tools typically require a certain level of technological literacy and familiarity with digital interfaces [55, 56].

PDAs can offer balanced information on the benefits and harms of treatments, helping patients understand health status-related choices and associated outcomes to support optimal decisions [57]. Existing PDAs, including booklets, videos, and web-based resources, are user-friendly, easy to operate, and readily acceptable [58], and have been proven effective in supporting decision-making across various clinical settings [59]. These characteristics provide a foundation for developing tailored PDAs for gastrostomy placement.

The development of future PDAs for G-tube placement should be planned from three perspectives: content, development process, and presentation format. In terms of content, PDAs should include the following core modules: a clear description of the clinical context of cancer-related dysphagia and the available decision options; balanced information on the benefits and risks of gastrostomy tube placement; structured values clarification exercises to help patients weigh medical benefits against personal concerns; a family engagement module that facilitates informed, non-coercive participation of family members while safeguarding patient autonomy; and coverage of perioperative considerations and postoperative tube care guidance. In terms of the development process, given that some patients in this study recalled information from physicians that was inconsistent with the available evidence, such as Patient P2’s statement that “the doctor explained that gastrostomy could resolve my aspiration pneumonia,” which is not supported by current research [60–63], developers should pay particular attention to accurate information delivery to avoid misunderstanding. Specifically, information verification steps or patient-provider discussion sessions may be incorporated during the development process to ensure that patients correctly understand the content of health education materials. In terms of presentation format, PDAs should integrate multiple media, including paper-based booklets, videos, and webpages, to accommodate the collaborative needs of patients of different ages and their families.

Furthermore, to enhance the effectiveness of healthcare provider-patient communication, structured communication pathways can be established to systematically integrate PDAs into communication processes. Clarifying the content, timing, methods, and tools of communication can develop a standardized, systematic, and coherent information delivery model. This would provide patients with unified and transparent information about G-tube placement, ultimately promoting truly informed decision-making.

Limitations

This study has several limitations. First, although we employed maximum variation sampling to include patients with diverse ages, cancer types, and nutritional statuses, and achieved data saturation, the full spectrum of decision-making experiences across all subgroups may not have been entirely captured. Future studies with larger, more targeted samples are warranted to examine decision-making factors within specific clinical subgroups in greater depth. Second, this study only examined factors that promote and hinder the decision-making process of patients with localized cancer and dysphagia. Although this focus provides insight into how family dynamics and cultural values shape patients’ decision-making within the Chinese healthcare context, these context-specific features may limit the generalizability of the findings to other regions that place greater emphasis on individual autonomy and operate under different healthcare systems. The findings warrant validation in other cultural and institutional settings. Third, due to physical limitations, some interviews were conducted at the bedside, where other patients may have been present. Although the researcher made every effort to ensure privacy, the presence of others could still have influenced the responses of the participants. Future studies should aim to ensure complete privacy during the data collection process. Fourth, all participants were Chinese-speaking patients with cancer-related dysphagia who could communicate normally. Consequently, the decision-making experiences of dialect speakers and patients with poorer general conditions remain unclear. Given that family members emerged as key sources of support in decision-making, future research should further examine decision-making experiences related to G-tube placement among patients with cancer and dysphagia and their family members using a dyad coping framework. Furthermore, multidisciplinary collaborative models should be further explored, leveraging the role of nurses in providing decision-making information regarding G-tube placement, nutritional support education, psychological support, and home care guidance, thereby establishing a more integrated patient support system.

Conclusions

In summary, this study systematically elucidates decision-making attitudes and key influencing factors related to gastrostomy among patients with cancer and dysphagia within the Chinese cultural context. The findings indicate that illness perception and survival needs are fundamental drivers of decision-making, whereas effective healthcare provider-patient communication and family-peer social support function as crucial facilitating factors. In contrast, emotional-rational conflicts and insufficient decision-making information constitute major barriers to decision-making. Future research should develop multimodal decision aids that are aligned with local culture and provide personalized decision support based on each patient’s specific circumstances to accommodate the needs of patients with diverse backgrounds, establish standardized healthcare provider-patient communication protocols that systematically integrate these tools, and strengthen family-peer collaborative support systems while ensuring that decisions reflect informed autonomous choice aligned with patients’ values. Furthermore, at the policy level, attention should be directed toward ensuring equity in healthcare resource allocation and improving cross-regional health insurance coordination mechanisms to eliminate systemic barriers faced by patients.

Abbreviations

G-tube

Gastrostomy tube

PDAs

Patient decision aids

Author contributions

Y.W. and X.C.: Conceptualization, Investigation, Formal Analysis, Writing - Original Draft, Writing - Review & Editing.S.C. and Y.Y.: Data Curation, Formal Analysis, Writing - Original Draft.F.Z.: Resources.Z.Z: Writing - Original Draft.J.Z.: Project Administration, Conceptualization, Methodology, Writing - Review & Editing, Supervision.

Funding

This research received no external funding.

Data availability

The datasets used and/or analyzed during the current study are available from the corresponding author upon reasonable request.

Declarations

Ethics approval and consent to participate

The study was approved by the Ethical Committee of Fujian Medical University (Fuyi Ethics [2023] No. 127) and was conducted in accordance with the principles of the Declaration of Helsinki. All ethical principles were strictly observed, including informed consent, protection of privacy and confidentiality, fairness and reasonableness, and equitable reporting. Prior to participation, all participants signed a written informed consent form that explained their right to withdraw from the study at any time without repercussions, and guaranteed the confidentiality and non-disclosure of their personal information. During data transcription and analysis, numerical identifiers were utilized in place of participants’ names. All records and participant information were securely stored in a password-protected folder.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.