Feeding tube self-management experience of patients at home after discharge following esophageal cancer surgery

Abstract

BACKGROUND

Esophageal cancer (EC) is an aggressive malignancy with low survival (10%-30%). Nutritional problems are present throughout the perioperative period and are key to prognosis. Home enteral nutrition appears to improve the nutritional status of patients with EC. Few studies have addressed the experience of patients administering their own nutritional fluids and managing their own feeding tubes at home. The aim of this study was to explore the real-life experience of self-management of feeding tubes in patients at home after EC surgery in the first 3 months after discharge following surgery.

AIM

To explore feeding tube self-management experience of patients at home 3 months after discharge following EC surgery.

METHODS

Face-to-face semi-structured interviews were conducted with 18 patients using a feeding tube at home after EC surgery. Thematic analysis of the recordings identified themes related to feeding tube self-management.

RESULTS

Patients expressed similar feelings about their tube management experiences concerning three contextualized themes: Self-management dilemmas, distressing experiences, and self-management facilitators.

CONCLUSION

There are many dilemmas and problems in self-managing feeding tubes in postoperative homebound patients with EC. Clinical staff should provide guidance to promote a positive change in self-management behavior.

Key Words: Esophageal cancer; Home care nursing; Feeding tubes; Self-management; Qualitative research

Core Tip: Good self-management behavior ensures the safety and effectiveness of the feeding tube. However, the experience of feeding tube self-management in homebound patients after esophageal cancer has rarely been explored. This study used a descriptive phenomenological research method to explore the experiences of 18 patients in self-managing their feeding tubes. It found that they experienced distress, fumbling, coping and adaptation, and identifying their specific expectations. This study can develop new interventions for this population and provide recommendations for negative experiences.

INTRODUCTION

Esophageal cancer (EC) is an invasive tumor of the upper digestive tract originating in the epithelial tissue of the esophagus. In 2022, EC ranked 11^th in global incidence and 7^th in mortality, with over half of cases occurring in China[1]. Surgery remains the primary treatment modality[2], but due to permanent alterations in the structure of the digestive tract post-surgery, the incidence of malnutrition is the highest among all malignant tumors[3]. Consequently, nutritional support is vital for the rehabilitation of postoperative EC patients. Common approaches include nutritional counseling, enteral nutrition (EN), and oral nutritional supplements. Notably, nutritional counseling reaches 100% utilization, 48.47% of patients opt for EN, and oral nutritional supplement has an acceptance rate of 32.14%[4]. With the implementation of enhanced recovery after surgery protocols[5], hospital stays have shortened, leading more EC patients to choose home EN (HEN) for continued nutritional support[6]. HEN can enhance immune function in postoperative EC patients and reduce the incidence of postoperative malnutrition. However, various complications, including gastrointestinal, mechanical, and metabolic issues, can arise during management[7], imposing significant physical and psychological burdens on patients. A descriptive study of 1600 HEN patients in the United States[8] reported that mechanical complications were most prevalent, including granulation tissue (20.1%), leakage (11.3%), tube dislodgement (8.9%), tube site infection (5.6%), and tube breakage/damage (2.8%). These issues not only induce anxiety in patients[9] but also increase the consumption and burden of healthcare resources[10], diminishing the effectiveness of HEN treatment. Therefore, it is imperative to focus on tube-feeding complications in HEN patients, aiming to prevent, monitor, and address them promptly to ensure the safety and efficacy of HEN. Causal analysis reveals that 80% of tube-fed patients may experience a range of mechanical complications due to inadequate self-management practices, severely impacting their quality of life and well-being[7]. Thus, enhancing the self-management capabilities of this population is an urgent priority that needs to be addressed.

Currently, research on self-management among HEN patients primarily focuses on quantitative[8] and interventional studies[11]. Qualitative research has explored patients’ and caregivers’ perspectives on home enteral tube feeding (HETF)[12] and its impact on daily life[13]. However, understanding the barriers and facilitators in the self-management of HETF patients can assist healthcare professionals in developing more comprehensive interventions. Research in this area remains limited among postoperative home-based EC patients. Therefore, the objective of this study is to investigate the experiences of Chinese postoperative home-based EC patients in self-managing feeding tubes, including their perceptions, care practices, and coping strategies. The study aims to identify challenges and enabling factors to inform the development of novel interventions for self-managing feeding tubes in postoperative home-based EC patients, with an emphasis on reducing mechanical complications and enhancing the safety and utilization of feeding tubes.

MATERIALS AND METHODS

Study design

This qualitative study was based on a relativist ontological position and used a phenomenological approach. This approach was considered appropriate for this study because the study attempted to explore the real feelings about self-management of feeding tubes of homebound patients discharged after EC surgery. The patients were recruited from Tertiary Hospital (Affiliated Hospital of Jiangnan University) in Wuxi, Jiangsu Province, China. Patients were recruited in two different ways. The first was recruitment posters located in the Thoracic Surgery Clinic on the 4^th floor of the hospital. Second, permission for inclusion was obtained by a follow-up telephone call by a nurse at the hospital’s Department of Thoracic Surgery. In order to provide a diverse sample of experiences for analysis, interested participants were selected on the basis of location, literacy, age and type of feeding tube, including a variety of ages and genders. All participants were given a small gift of RMB 30.

Before the interviews, we reviewed the guidelines for HEN and related research[14-18] to develop the interview outline, consulted with a clinical expert in thoracic cardiothoracic surgery (You QJ, MD) and a nutrition specialist nurse in Jiangsu province (Chu JH, deputy head nurse), performed preventive interviews with two patients, and modified the interview outline based on the results of the interviews. Then, after approval from the research team (Cai P, You QJ, Li JY, Chu JH, Feng XY), the formal interview outline was determined consisting of six open-ended questions: (1) “At home, when you use your own feeding tube, how does it feel? Can you explain it?”; (2) “At home, how does managing your own feeding tube affect your daily life, mood, and social interactions? Can you elaborate on that?”; (3) “At home, how do you feel about managing your own feeding tube? Why do you say this?”; (4) “At home, what confusions have you faced in managing your own feeding tube? How did you resolve them?”; (5) “What do you think would help you manage your tube better at home? Can you illustrate?”; and (6) “Anything else you would like to add?”.

Participants

Inclusion criteria included patients > 40 years of age[19] using a jejunostomy or nasoduodenal tube in the home setting 3 months after esophagectomy, current use of the jejunostomy or nasoduodenal tube at the time of interview, normal hearing and clear articulation, and informed consent and voluntary participation in the interview. Exclusion criteria were a combination of major postoperative complications, history of psychiatric or mental illness, and insertion of a feeding tube for palliative reasons.

Date collection

Data were collected from January to October 2023. Patients expressing interest in participating in the interviews were subsequently contacted by a phone call from the researcher to agree on a time and for the interview. According to the interviewees’ wishes, a quiet and comfortable meeting room on the 5^th floor of the Affiliated Hospital of Jiangnan University was chosen for the face-to-face interviews after obtaining their consent. The patients were advised that the interview data would only be used for scientific research and would never be divulged. The interviews were recorded using the recording function of a Huawei mobile phone. The content of the interview was based on the interviewee’s mood at the time. No verbal hints or instructions were given during the interviews and the interviewers took care to observe and note in writing non-verbal expressions, such as tone of voice, intonation, facial expressions, emotional changes and other aspects. The interviewee could stop the interview at any time. A full interview took approximately 30-40 minutes. Data collection and analysis were carried out simultaneously and the interview was stopped when three consecutive interviews revealed no new experiences or information.

Date analysis

Within 24 hours after the end of each interview, the audio-recorded data were converted to text. The data were compared word-for-word with the paper notes to supplement the non-verbal data. Patients were queried concerning ambiguous or doubtful points in the transcribed data and, if necessary, the information was modified and verified to improve the original data. In the process of data analysis, the interviewee’s information and the interview text were numbered based on the order in which the interview was conducted (P1, P2, P3, etc.), using the number instead of the interviewers, and the Colaizzi analysis method was divided into seven steps[20]. In the first step, two researchers (Miao GL and Cai P) carefully and repeatedly read all the transcribed data back-to-back to form a holistic view. Second, these researchers identified meaningful statements and key words in the data that were related to the self-management of feeding tube behavior of homebound postoperative EC patients. Third, the same researchers (Miao GL and Cai P) sorted out their own feelings, prejudices and understandings about each statement and recorded this information in notebooks so that they would not be influenced by the preconceptions when analyzing the data. The researchers listened to the interview recordings, repeatedly read the interview notes, analyzed the data in terms of semantics and context, transcribed their own thoughts in their notebooks according to the interviewees’ statements at that time, considered the entire data to clarify some concepts or meanings to certain data and assigned a code number. The processes in this step followed the following order. Every sentence was scrutinized for key words. The sentences were coded: (1) Responsible; (2) Care; and (3) Gratitude. The principle was that the more detailed the sentence coding, the more conducive to the later coding classification. Fourth, the research team members (Cai P, You QJ, Li JY, Chu JH, Feng XY) combined similar and related code numbers to construct units of meaning, differentiated code numbers, looked for connections between code numbers and repeatedly refined the units of meaning clustered into themes. Fifth, these five researchers consolidated the results of step 4 and extracted the original statements of the respondents to describe each theme in detail. Sixth, the five researchers repeatedly compared similar themes or descriptions, extracted similar ideas, reduced the detailed descriptions and condensed the themes into a single term or concept. Seventh, Miao GL and Cai P returned the obtained themes to the respondents for validation, asking whether they captured their experience with at-home tube management. If there was any bias, these two researchers returned to the first step to reanalyze the data. Respondent citations were labelled P (denoting the person using the tube) followed by the individual’s study number. Study data were centrally managed by the principal investigator (Cai P), and each recording and associated electronic file was assigned a unique, anonymized number in chronological order. All data were stored on the principal investigator’s password-protected computer, and signed informed consent forms and study documents were stored in a locked cabinet in the office of the head nurse of the Department of Thoracic Surgery at Jiangnan University Hospital.

Quality control

The study adhered strictly to the protocol, with two researchers who completely analyzed each manuscript, with a collective discussion by all members of the research team to identify themes and sub-themes. The methodology was accurately reported using the standards for Reporting Qualitative Research to improve the reliability of the data and analyses and to ensure methodological transparency[21].

Ethical approval

All respondents signed an informed consent form before participating in the study, which was approved by the Ethics Committee of the Affiliated Hospital of Jiangnan University (LS2023088) and conducted at the Affiliated Hospital of Jiangnan University.

RESULTS

General information on study population

Of the 28 people who expressed an interest in taking part in this study, 18 agreed to be interviewed. Reasons for non-participation included lost contact (n = 5), reversal of interest (n = 3) and failure to attend the interview (n = 2). The majority of participants interviewed were male (61.1%), which may be related to the age of onset of the disease, as Chinese men are more likely to drink alcohol and smoke cigarettes. The median duration of the interview was 35.50 minutes (range: 27-45 minutes). All respondents spoke Chinese. Participant characteristics are summarized in Table 1.

Table 1 Participant characteristics.

Patient ID	Gender	Age (years)	Marital status	Education level	Occupations	Residence	Feeding tube types	Interview time (minutes)
P1	Male	63	Married	Middle school	Freelancing	Urban	Jejunostomy	27
P2	Female	56	Married	Middle school	Worker	Rural	Jejunostomy	32
P3	Female	72	Widowed	Elementary	Farmer	Rural	Jejunostomy	28
P4	Male	58	Married	Middle school	Administrator	Rural	Jejunostomy	35
P5	Male	68	Married	Elementary	Worker	Rural	Jejunostomy	44
P6	Female	61	Divorced	Middle school	Retirement	Rural	Jejunostomy	36
P7	Male	55	Married	Undergraduate	Administrator	Urban	Jejunostomy	42
P8	Male	46	Single	Undergraduate	Technical staff	Rural	Jejunostomy	30
P9	Female	67	Married	Junior college	Retirement	Urban	Nasoduodenal	40
P10	Male	47	Married	Middle school	Worker	Urban	Jejunostomy	45
P11	Male	55	Divorced	High school	Freelancing	Rural	Jejunostomy	31
P12	Female	64	Married	Elementary	Farmer	Rural	Nasoduodenal	32
P13	Female	66	Married	Middle school	Retirement	Urban	Nasoduodenal	27
P14	Female	72	Widowed	Elementary	Farmer	Rural	Nasoduodenal	34
P15	Male	56	Married	Junior college	Worker	Urban	Jejunostomy	39
P16	Male	70	Widowed	Elementary	Freelancing	Rural	Jejunostomy	41
P17	Male	65	Married	Middle school	Worker	Urban	Jejunostomy	43
P18	Male	59	Divorced	Elementary	Worker	Urban	Nasoduodenal	38

Thematic analysis

The process of feeding tube self-management is complex and varied, with both facilitators and barriers. This process is physically and psychologically challenging for patients. While each patient’s experience is unique, they all perceive the benefits of the use of feeding tubes for their own nutrition. In the present study, based on the overall sense of benefit, similar perspectives were summarized. Three themes that were closely related and influenced each other were identified in Table 2.

Table 2 Themes and sub-themes of the study.

Theme	Sub-theme
Self-management dilemmas	Lack of access to information
	Lack of behavioral skills
	Lack of awareness
Disturbing experiences	Difficulties in the self-management process
	Psychological distress
	Difficulties in life
Factors that enhance self-management	Access to support
	Self-psychological regulation
	Summary of experience
	Initiative to seek help

Theme one: Self-management dilemmas

More than half of patients said that although medical staff provided them with discharge instructions when they were discharged from hospital, the form of teaching was centralized and uniform, the instruction time was short, and the level of patient education was not taken into account. As a consequence, the understanding of some patients was incomplete. After returning home, the patients were challenged by constantly changing problems of feeding tube self-management, inadequate operational skills and a lack of access to information. 44.4% patients felt that the feeding tube was unnecessary and they did not want to use it. These feelings hinder self-management of the feeding tube, and thus the effectiveness of self-management. This theme could be divided into three main areas.

Sub-theme one (lack of access to information): When problems arose with self-management of feeding tubes at home, 66.7% patients said that there were too many websites to search for relevant information. They could not judge the authenticity of the information, which prevented their self-management of the problem. Patients expressed the hope that hospitals would provide an authoritative and reliable platform to access trusted information. The following are some relevant comments: P11: “This time the skin around the tube is infected, and I hope there is a WeChat public number that includes knowledge and care videos on prevention, detection and management of complications. Also, the phone number of the video producer and the person in charge should be provided, so that I can phone if I don’t see the video clearly. It is more convenient to be able to communicate online so that I can take photos and videos and send them to you”. P12: “List on a piece of paper the possible situations that can occur in the feeding tube or record a video, recording audio is fine, home service is best”.

Sub-theme two (lack of behavioral skills): The age of onset of EC is skewed towards middle-aged and older people, with the majority located in rural areas in China. Their predominance may be related to living and eating habits, with 61.1% patients stating that administering nutrients through a feeding tube at home has always been poorly done, with frequent malfunctions, placing a burden on themselves and their family members. The following are relevant quotes: P6: “I can’t do it well by myself anymore, I can’t get hold of what I’ve pumped in and get intestinal obstruction. This makes me bitter”. P9: “I didn’t know how to use the tube and it got clogged. My wife accompanied me by taxi to go to the hospital for a doctor’s appointment”.

Sub-theme three (lack of awareness): 44.4% patients stated that they were often influenced by their own inherent cognition in the process of using and maintaining feeding tubes. Believing that their condition had been cured, they often felt that the tubes were unwanted or not needed. Thus, their motivation for feeding tube self-management at home was low. As a result, motivation to self-manage the tube at home is low and adherence is poor. The following quotes are examples: P18: “I didn’t use the tube much after I went home. During the last clinic follow-up, Dr A told me to keep using the tube, but I didn’t want to use it. I drank the nutritional solution through my mouth, which is digested anyway and has the same effect”. P3: “I think my body has recovered and I am able to eat by mouth, so I don’t need to use the feeding tube for the nutritional solution. So I didn’t use the feeding tube for the nutritional solution at home”.

Theme two: Disturbing experiences

Managing a feeding tube independently is a new skill for patients. It is a process of adjustment, acceptance and mastery, which requires a lot of their time. For example, according to P13: “Every day I have to prepare the feeding solution, measure the length of the tube and clean the feeding equipment, which consumes much more time than eating. The feeling of not being able to live as before and having to manage the feeding tube was psychologically frustrating”. Theme two can also be divided into three parts.

Sub-theme one (difficulties in the self-management process): Everything is difficult at first, and overcoming challenges is most difficult in the first few months after discharge, for example, skills in handling tube feeds. The following quotes illustrate this difficulty: P11 said: “At the beginning, when I went back, I used a syringe to push the nutrient solution. Sometimes when I administered it quickly, I experienced flatulence”. 77.7% patients always go through a slow process of getting used to and mastering the technique. However, some patients who are elderly and have a low level of understanding still need help from other family members to manage the feeding tube in the early stages of discharge. P5: “I thought it was quite easy to listen, watch and learn from the nurses at the hospital. However, I couldn’t do it myself at home and I needed some help from a family member to be able to operate it”. The problems have changed over time. For example, it is inconvenient to buy the feeding fluid. P7: “The feeding tube care is quite good. Can we buy the feeding fluid at our local hospital or pharmacy? Your hospital is in the suburbs, which is too far away for me to conveniently go there”.

Sub-theme two (psychological distress): After having gone through many medical treatment experiences, confirmation of diagnosis and treatment, EC patients are prone to psychological distresses that include anxiety, fear and uncertainty about the disease. In addition, they have to manage the feeding tube by themselves after being discharged from the hospital, and they feel that their life has lost its normality and are often affected by depression. The following quotes are relevant: P17: “Bringing home a feeding tube and having to administer nutritional fluids by myself every day makes me sad”. There is also anxiety about the tube. P10: “Will I have to rely on this tube for all my nutrition in the future and will I still be able to eat normally by mouth like before?”. 55.5% patients developed a sense of shame because the self-management of the feeding tube affected other people’s daily lives and did not dare face their friends or family as a result. P18: “When other people have dinner, I use a syringe to push the nutritional fluids, I always feel that it affects other people’s appetite and they are all not very willing to sit down and eat together”. P11: “This time the mouth of the tube was purulent, I was sterilizing and using medicine. My little grandson covered his nose and shouted that it stunk and ran away. I slept on the bed alone, went to the balcony, went back to the bed, and the door of the room was open. I just didn’t want to go out, and I felt embarrassed”.

Sub-theme three (difficulties in life): 72.2% patients said that the process of self-management of feeding tubes at home had led to major changes in their lifestyle, such as economic pressure. P14: “I don’t eat much at home. I still mainly rely on nutritional fluid. The burden of buying nutritional fluid for a long period of time is great. It costs 2000-3000 RMB a month”. Other difficulties and inconveniences included travelling (P7: “When I travel, I have to use a syringe for nutritional solution three times a day, and I have to carry the nutritional solution with me”), sleeping (P9: “When I sleep, I always squeeze the tube and it hurts when I sleep on my side, so I can’t sleep well anyway”), and bathing (P1: “Every time before I take a bath, I wrap myself in three layers of clingfilm, inside and out, and disinfect myself immediately after washing, because I don’t want a leaky mouth infection”).

Theme three: Factors that enhance self-management

Patient self-management of feeding tube behavior requires the support of multiple resources to function. The rational mobilization of positive resources can promote behavioral change in a positive direction.

Sub-theme one (access to support): Multifaceted support plays a crucial role in shaping or changing tube self-management behavior; the more effectively family and social support is mobilized, the greater the self-management efficacy of the patient. P7: “My wife is very caring and responsible for me. I rely on her to help me manage the tube at home for a period of time”. Some patients reported that they kept in touch with their ward mate, asking each other for advice when they encountered problems and encouraging each other to increase their confidence in managing the tube. P16: “I was in the hospital in the bed next to the old man who had a jejunostomy tube for 3 years. He gave me his phone number when I was discharged. When I had problems with the tube care that I didn’t understand at home, I called him and he was a great help to me”.

Sub-theme two (self-psychological regulation): 38.8% patients said that after a period of internal struggle and feeling the benefits of the tube, they regulated their own moods and found that self-management of the tube was not a difficult task. P10: “At the beginning, I always felt that it was a difficulty to manage the feeding tube. Every time I had a follow-up, I asked the doctor if I could remove the tube and every time. I checked the blood the doctor said that the nutritional indicators could not be met and the tube could not be removed. I thought that the tube was there to help me and found that it was not difficult to administer nutritional fluids, sterilize the tube with iodine steam and apply adhesive tape”. At the same time, they actively dealt with various challenges in the process of self-managing the tube. Living with the tube became the new normal for the patients.

Sub-theme three (summary of experience): 44.4% patients indicated that they had gained experience in managing feeding tubes over time and that these experiences had helped them to manage the tubes better. For example, thoroughly shaking the nutrient solution and trying to avoid pumping food prepared in the kitchen through the tube into the bowel reduced the incidence of tube blockages. An example comment from P11 is illustrative: “When you pump this nutrient, you have to shake it. If you don’t shake it, it will settle. I don’t use a syringe to draw the nutrient solution out of the bag. Instead, I use scissors to cut a mouth directly and pour it out, because drawing the nutrient solution out of the bag with a syringe is too tiring for my hands (demonstrates laborious hand movements)”. P8: “Soup has oil in it and can easily clog the tube. Anything greasy should not enter the feeding tube. Instead, greasy things are best eaten by mouth”.

Sub-theme four (initiative to seek help): Refinements in mobile information technology have lessened the time and space constraints to physician visits for patients. 33.3% patients said that problems encountered during feeding tube home care prompted their first need to seek help from an attending physician, both to solve the difficulties in a timely manner and to reduce the pressure of emergency room visits. The following comments are illustrative: P1: “One day I wiped my body, I saw that there was blood on the gauze. There was also pus. I told my daughter to take a picture and send it (WeChat) to Director A (the attending physician). I immediately bought iodine disinfectant to go home to disinfect”. P11: “The tube penetrated my flesh, then loosened. After sweating, it got stuck on this opening, and it became inflamed with production of pus. I called Director A, who told me to go to the pharmacy to buy the required medicine”.

DISCUSSION

Through these interviews, we gained new insights and a deeper understanding of the experiences of postoperative EC patients in self-managing feeding tubes at home. The findings indicate that during the first three months at home, postoperative EC patients underwent a process of distress, exploration, coping, and adaptation in self-managing their feeding tubes. The interviews revealed that knowledge and skills are essential prerequisites for effectively self-managing feeding tubes, while self-awareness is a crucial factor in sustaining self-management practices. Family and social support, self-adjustment, and perceived benefits emerged as facilitating factors for the self-management of feeding tubes. Furthermore, the study highlighted the importance of considering psychological and social life factors in the self-management of feeding tubes. In this study, three core themes were identified: Self-management challenges, distressing experiences, and reinforcing factors to self-management.

More than half of the patients mentioned that self-managing the feeding tube in the weeks before discharge was the most challenging aspect. When dealing with tube feeding issues, the existing HETF home care services fail to provide patients with professional, reliable information resources, forcing patients to seek informal healthcare platforms online to select alternative videos or solutions they perceive as suitable. This not only causes frustration but also influences their decision on whether to continue using the feeding tube[22]. Most patients hope that medical institutions can offer professional, reliable, and easily accessible information sources, as they may feel that professional medical advice provides greater safety. A survey on health information access in the Polish healthcare system[23] reported that patients prioritize obtaining information from doctors, followed by doctors’ blogs or vlogs. Additionally, the safety, readability, comprehensibility, and usability of information are key concerns for patients. Previous studies have shown that information directly impacts behavioral skills, as it serves as a prerequisite for skill execution[24]. In the interviews, most patients mentioned that their initial lack of proficiency in handling home care tasks led to a series of issues, placing a heavy physical and psychological burden on them. Clinical guidelines recommend that training for patients and family caregivers before discharge, along with ongoing post-discharge care, is essential for successful HETF management[25]. A comprehensive discharge plan and effective communication are necessary for healthcare professionals to conduct this training. It is important to note that during discharge planning, paper or electronic manuals may be provided based on the patient’s age, education level, self-management capacity, and specific needs to meet personalized information requirements[26]. Chen et al[11] suggest using mobile applications as a supplementary tool to connect nursing interventions with home care, which can enhance self-management effectiveness for HETF patients and reduce mechanical complications. We also found that a small number of patients were uncertain about the benefits of the feeding tube, lacked awareness, and struggled to maintain self-management. This insufficient awareness may impact patients’ motivation for self-management, potentially leading to stagnation in subsequent self-managing of feeding tubes[27]. According to Hou et al[28], motivational interviewing can help patients improve adherence, decision making, and overall health and well-being.

Most patients reported that lifestyle changes and independently managing a feeding tube brought about a series of psychosocial challenges, reducing their confidence in self-management. On the one hand, the shift from oral eating to tube feeding required by this new lifestyle demands adaptation, while managing the feeding tube alone requires significant time and effort, making patients feel they have lost the familiarity of their former lives[16]. This transition requires patients to shift from traditional paternalistic healthcare to actively engaging in self-management and assuming related responsibilities. To support patients in adapting to this role, various skills are necessary, such as motivational interviewing and educational programs[29]. Additionally, coping strategies are considered an essential component of self-management; active self-regulation and acceptance of the feeding tube help patients return to normal life[13]. On the other hand, obstacles or limitations in social activities and eating can lead to negative experiences[16], possibly related to differences in self-management capabilities. Dineen-Griffin et al[30] recommend a comprehensive, systematic approach that integrates self-management support at the levels of patients, healthcare providers, and service organizations. This approach has been shown to assist patients in selecting techniques and tools for healthy behavior, facilitating role transitions, conducting regular assessments and monitoring self-management plans, setting goals, and addressing problems, moving beyond simple instruction, educational programs, or disease management.

Some patients reported that through long-term feeding tube management, they accumulated coping experience, with peer encouragement and support boosting their motivation for self-management, while family and societal care fostered a sense of happiness and fulfillment, enhancing their efficacy of self-managing feeding tubes. This change may stem from empowering patients to self-manage their feeding tube, thereby promoting their independence, self-management, and sense of self-efficacy. Additionally, social support is positively correlated with self-management efficacy; the more material and emotional support patients feel, the stronger their motivation for self-management[31]. Higher self-management efficacy is more likely to drive self-management, indicating that improving self-management efficacy is an important intervention in feeding tube maintenance[32]. A meta-analysis of interventions aimed at enhancing self-efficacy in cancer patients found that group interventions were more effective than individual or dyadic ones, with face-to-face formats showing a larger effect size and theory-based interventions proving more effective in strengthening self-efficacy[33]. Future interventions should focus on face-to-face formats - in which information and ideas are exchanged in a social setting - prioritizing individual initiative (i.e., self-efficacy) to stimulate positive resources.

CONCLUSION

This study conducted qualitative interviews with 18 postoperative homebound patients with EC to gain an in-depth understanding of the actual experience of self-management of feeding tubes at home. These patients faced many dilemmas and problems in self-managing feeding tubes, and the motivation and effectiveness of self-management would be reduced if they were not given active interventions. However, some patients obtained support from their families and society, sought help from professional staff and synthesized their self-management experiences to effectively deal with the difficulties in their self-management process and lessen negative experiences. For healthcare professionals, it is necessary to pay attention to patients’ self-management experiences, beginning with patients’ needs, with a focus on resolving patients’ confusion, providing home support services, reducing patients’ self-management burden, and encouraging patients to develop good self-management behaviors. In the future, we will develop risk assessment for G-tube self-management using an information technology platform, real-time remote monitoring and guidance, and instant medical decision-making, so that patients can receive convenient and rapid diagnosis and treatment services.