Home-based enteral nutrition self-management challenges in young and middle-aged patients with Crohn’s disease: a qualitative study

Abstract

Objectives

To explore the challenges faced by young and middle-aged patients with Crohn’s disease (CD) in managing home enteral nutrition (HEN) and to identify strategies to improve their self-management and treatment adherence.

Design

A qualitative phenomenological study.

Setting

The study was conducted at a comprehensive tertiary hospital in Jiangsu, China, with a focus on patients undergoing long-term HEN treatment for CD.

Participants

14 participants, aged 18–60 years, diagnosed with CD, and receiving HEN. Inclusion criteria required participants to be capable of clear self-expression and to provide voluntary consent. Exclusion criteria included cognitive impairment, mental illness or other major health conditions unrelated to CD.

Interventions

Data were collected through semistructured interviews, exploring participants’ self-management challenges with HEN.

Outcomes

14 valid interviews were included for analysis. Two main themes were identified: subjective challenges, including psychological burden, self-management confidence and disease perception bias, and objective challenges, including social restrictions, economic burden and insufficient support systems.

Conclusions

Young and middle-aged patients with CD face significant subjective and objective challenges in managing HEN, which impact their physical and psychological well-being. Targeted interventions are needed to address these difficulties and improve self-management support.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• This study conducted in-depth interviews with young and middle-aged patients with Crohn’s disease, comprehensively and systematically collecting their experiences and perceptions regarding home enteral nutrition self-management.

• By using qualitative research methods, this study reflected the subjective and objective challenges in home enteral nutrition management from a diverse and realistic perspective.

• The interviewees in this study were all from a single tertiary hospital in China, which may limit the representativeness of the findings.

Introduction

Crohn’s disease (CD) is a chronic, non-specific inflammatory disease of the gastrointestinal tract that can affect the entire digestive system from the mouth to the anus, with a particular predilection for the small intestine and a high rate of intestinal resection.^{1 2} Patients with CD are prone to inadequate nutritional intake due to self-imposed dietary restrictions or temporary fasting to alleviate gastrointestinal symptoms, as well as fear of eating.³ Additionally, factors such as infections, surgical trauma and intestinal inflammation contribute to nutrient loss and malabsorption, making patients more susceptible to malnutrition.⁴ Studies indicate that the prevalence of malnutrition in patients with CD is 65%–75%,⁵ and it can reach as high as 86.7% in hospitalised patients undergoing surgical treatment.⁶ Malnutrition not only compromises immune function but also increases hospitalisation rates.⁷

In the nutritional management of CD, enteral nutrition (EN), as a non-pharmacological intervention, not only effectively improves patients’ nutritional status but also demonstrates significant benefits in inducing and maintaining disease remission.8,11 Additionally, studies indicate that combining EN with other therapeutic modalities may enhance treatment outcomes. A longitudinal study by Yamamoto et al⁹ showed that EN could reduce postoperative recurrence rates in patients with CD following intestinal resection. Similarly, a multicentre retrospective cohort study by Hirai et al¹⁰ reported that EN could augment the efficacy of infliximab in sustaining remission. Moreover, a meta-analysis¹² demonstrated that the combination of EN with infliximab could lower the incidence of infliximab resistance among patients with CD. Consequently, EN has become an essential supportive measure in the long-term management of CD.

Despite the widespread acknowledgement of the significance of EN, many patients exhibit low adherence to home enteral nutrition (HEN) regimens,^{13 14} which consequently impacts its therapeutic efficacy. A meta-analysis¹¹ revealed an inverse relationship between the duration of EN and its perceived effectiveness; specifically, as the treatment duration increased, the perceived benefits reported by patients diminished. This decline in perceived efficacy may partially explain the observed decrease in adherence. Alhagamhmad et al¹⁴ identified the palatability of EN formulations as a critical factor contributing to reduced adherence. Furthermore, a cross-sectional study conducted by Cao et al¹⁵ demonstrated that adherence to EN was positively correlated with patients’ quality of life; however, adherence to nasogastric tube EN among patients with CD was notably low and tended to decrease progressively following hospital discharge. A Cochrane review,¹⁶ based on very low-quality evidence, found no statistically significant differences in remission rates or adverse event incidence between the EN group and the steroid therapy group. However, the withdrawal rate was higher in the EN group, primarily due to poor tolerance, such as discomfort from nasogastric tubes and the unpalatable taste of the formulas, rather than serious adverse events. These findings highlight a critical clinical concern: improving patient tolerance and adherence to EN is essential for maximising its therapeutic benefits, particularly in long-term home-based management.

In recent years, the incidence of CD in China has been steadily increasing, particularly among young and middle-aged patients.^{17 18} These patients not only face the challenges of frequent hospitalisations due to the recurrent nature of their illness but also typically endure multiple pressures from their academic, professional and familial responsibilities. This significantly impacts their quality of life and imposes substantial economic and healthcare burdens on both their families and society.^{1 19} Therefore, enhancing adherence to HEN management among young and middle-aged patients with CD holds substantial practical significance.

A review of existing literature revealed a notable deficiency in qualitative studies that address the challenges related to EN in this specific patient population.20,22 Through semistructured interviews, this study aims to delve into the factors influencing adherence to HEN management among young and middle-aged patients with CD, as well as the dilemmas they encounter. The findings are intended to serve as a foundation for optimising nutritional management strategies in this population and to inform future self-management intervention programmes.

Objects and methods

Study subjects

Using purposive sampling, this study selected patients with CD who met the inclusion and exclusion criteria and visited the gastroenterology department of a tertiary hospital in Jiangsu Province between July and September 2024. The inclusion criteria were: (1) diagnosed with CD according to the diagnostic criteria established by the Inflammatory Bowel Disease Group of the Chinese Medical Association in 2024;²³ (2) receiving HEN for at least 1 month; (3) aged between 18 and 59 years; (4) fully alert with clear verbal communication and (5) providing informed consent and voluntarily participating in the study. The exclusion criteria included: (1) presence of severe complications, cardiovascular diseases or other tumours and (2) history of mental illness or cognitive impairment.

In this study, HEN was defined as EN administered in a non-hospital setting by patients or caregivers under the guidance of a healthcare provider. Eligible participants were required to have received HEN for more than 1 month as prescribed, regardless of the route (oral or tube feeding) or the level of nutritional support (exclusive or partial).

Following the principle of maximum variation in qualitative research, sample selection took into account characteristics such as age, marital status and occupation. The sample size was determined when data saturation was reached, meaning that no new themes emerged from the interviews. Participants’ names were coded numerically to protect their privacy.

Research methods

Determining the interview outline

Guided by the phenomenological research method in qualitative studies, a preliminary interview guide was developed through a review of the literature and discussions within the research team. Using purposive sampling, three young and middle-aged patients with CD receiving HEN were selected for pre-interviews, which helped finalise the interview guide. The final interview questions included: (1) Are you familiar with EN? How do you view HEN? (2) What impacts does HEN have on your daily life, work and studies? (3) How do you manage EN at home? (4) What factors do you believe can help or promote your use of EN? (5) What difficulties have you encountered during HEN? (6) How do you generally address these difficulties? (7) What support and assistance have you received during your HEN period? and (8) What additional help would you like to receive, and what are your expectations and suggestions regarding the content and format of that support?

Data collection methods

Interviews were conducted by two researchers who had completed courses in qualitative research, were well-versed in interviewing techniques and were knowledgeable about CD diagnosis, treatment and care. Both had established a trusting relationship with the participants. Before each interview, researchers thoroughly reviewed the participant’s medical condition and nutritional treatment plan. The interview location and time were arranged in advance with each participant, choosing a private and quiet room to ensure a conducive environment.

The purpose and procedures of the interview were explained in detail, and participants were informed that the interview would be audio-recorded and transcribed. Informed consent was obtained prior to the interview. Each session lasted 30–45 min. To protect participant privacy and ensure data authenticity, numerical codes were used instead of names. Researchers also observed and recorded participants’ facial expressions and body language during the interviews, adjusting the sequence of questions as needed to explore responses without leading the participant. Additionally, participants were assured that their responses would not impact their treatment in any way and that all information gathered would be used exclusively for this study. General demographic information was collected by reviewing electronic health records.

Data analysis methods

After each interview, recordings were repeatedly reviewed and transcribed verbatim within 24 hours. Data were organised and thoroughly analysed. Two researchers independently verified the original recordings and transcriptions, coded and categorised the data using MAXQDA 2020 software. Data analysis followed Colaizzi’s 7-step analysis method,²⁴ allowing for the systematic refinement of themes. Any discrepancies were resolved through discussion to reach a consensus.

Quality control measures

(1) Representative participants were selected following the principle of maximum variation sampling, considering a range of demographic and clinical characteristics, including age, sex, education level, employment status, disease activity and duration, as well as types and routes of EN; (2) interviewers in this study completed relevant coursework on qualitative interviewing, ensuring proficiency in interview techniques. During the interviews, they adhered to a neutral and non-leading approach, emphasised active listening and respect, and avoided the influence of personal assumptions on participants’ responses; (3) during each interview, interviewers explained when and how the results would be shared with participants for verification, maintaining contact to ensure data accuracy; (4) after each interview, interviewers wrote reflexive journals to document their role positioning, emotional reactions and the potential influence of interviewer-participant interaction on data collection. This ongoing self-reflection enhanced the reflexivity of the study; (5) data analysis and synthesis were independently performed by two researchers. In cases of ambiguity, the interviewer confirmed responses with participants and held joint discussions with the research team to reduce bias and (6) this study adhered to the Comprehensive Standards for Reporting Qualitative Research guidelines,²⁵ ensuring transparency and reliability throughout the data collection, analysis and reporting processes.

Patient and public involvement

Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Results

A total of 14 young and middle-aged patients with CD on HEN were enrolled in this study, comprising 8 men and 6 women, aged 20–56 years. Detailed demographic and clinical characteristics are presented in table 1. The analysis identified two primary themes and six subthemes, as illustrated in figure 1.

Table 1. General characteristics of young and middle-aged patients with Crohn’s disease.

No.	Gender	Age	Current disease activity	Duration of disease (years)	Duration of enteral nutrition (months)	Mode of enteral nutrition
P1	Male	20s	Severely active	1	2	Tube
P2	Female	20s	Mildly active	2	4	Tube/oral
P3	Female	30s	Remission	2	6	Oral
P4	Male	50s	Moderately active	7	17	Tube
P5	Male	40s	Moderately active	5	6	Tube
P6	Male	30s	Mildly active	3	7	Tube/oral
P7	Male	20s	Moderately active	8	32	Tube/oral
P8	Female	20s	Mildly active	3	2	Tube
P9	Female	20s	Mildly active	2	4	Tube
P10	Male	30s	Remission	4	11	Tube
P11	Female	30s	Mildly active	2	4	Oral
P12	Male	50s	Mildly active	13	29	Tube/oral
P13	Male	20s	Mildly active	2	3	Oral
P14	Female	40s	Mildly active	6	13	Tube

Note: ‘20s’=20–29 years old, ‘30s’=30–39 years old, etc; disease activity was assessed using the Harvey-Bradshaw Index; tube refers to enteral nutrition administered via a nasogastric or nasoenteric tube.

Figure 1. Thematic map of enteral nutrition self-management dilemmas among young and middle-aged participants with Crohn’s disease.

Subjective challenges in HEN self-management for young and middle-aged patients with CD

Insufficient coping and management skills

Limited coping abilities during early EN

In the early stages of illness, most patients with CD lack a systematic understanding of the procedures and precautions involved in EN, and their self-management abilities are limited—particularly when nasogastric feeding is administered at home. Patients undergoing nasogastric feeding must not only learn how to operate the nutrition pump, but also manage potential complications during infusion, such as tube blockages, improper temperature control of the formula and abnormal infusion rates. Inexperience and unfamiliarity with procedures often lead to anxiety or even fear, increasing the risk of adverse reactions and treatment interruption.

• P12: “At first, I was really scared to use the nutrition pump. I didn’t know how to operate it and was afraid of breaking it. The process was complicated, which had to hang the formula, adjust the speed, and flush the tube. In the beginning, I didn’t even dare to try it myself.”

• P9: “Maybe I didn’t flush with enough water, or maybe I rolled onto the tube in my sleep—either way, it got clogged. I didn’t know how to fix it. I was terrified I’d need to have another tube inserted. That’s just too painful.”

• P5: “My first experience with nasal feeding was in winter, and it was challenging. I wasn’t familiar with the machine or adjusting the temperature; the nutrient solution was cold, which caused frequent diarrhea and worsened my condition.”

In contrast, patients using oral EN encounter fewer operational difficulties, but still face challenges related to intake methods, dosing frequency and managing side effects.

• P6: “The doctor explained everything before discharge, but I still had trouble getting used to it at home. Sometimes I was in a rush and drank it all at once, which made my stomach feel bloated. Later, I realised it’s more comfortable if I split it into several doses and drink it slowly.”

Lack of confidence in self-management

Some participants expressed a lack of confidence when managing HEN, which stemmed primarily from three aspects:

First, some patients, especially those with limited health literacy or lacking relevant knowledge, experienced anxiety and fear when first initiating nasogastric feeding. They worried about being incapable of performing self-management tasks or feared making mistakes that could result in adverse outcomes.

• P14: “When the doctor told me I had to buy the equipment and manage enteral nutrition at home by myself, I was very resistant… I only graduated from high school and didn’t study medicine. The nutrition formula and the pump are expensive, and if I mess up the operation, it’s not just a waste of money—it could harm my body. Isn’t that just suffering?”

Second, some participants lost confidence in the treatment’s sustainability when they failed to see noticeable improvements within a short period, leading to feelings of futility and thoughts of giving up.

• P1: “I’ve been on tube feeding for two months, and I don’t feel any improvement. I don’t want to keep the tube in anymore—it’s annoying and pointless. What’s the use of doing this every day?”

Third, when their condition stabilised or life pace accelerated (eg, returning to work), some patients became less attentive to their nutritional regimen. This was particularly evident after switching from nasogastric feeding to oral intake. The convenience of oral feeding often led to a relaxation of standards and a decline in adherence.

• P3: “At first, I followed the doctor’s instructions and drank it on time. But over time, I felt fine and started forgetting about it. When I got busy, I wouldn’t drink it all day.”

• P9: “When I was on tube feeding, I felt like my condition was serious, so I didn’t dare to slack off. After switching to oral feeding, it’s definitely more convenient—but I just don’t pay as much attention to it.”

Disease perception and cognitive bias in treatment

Some participants lacked a systematic understanding of the indications for EN, particularly nasogastric feeding, and tended to mistakenly associate it solely with critically ill patients or those with complete eating disabilities. This misconception reflects not only a limited knowledge of the principles and indications of EN but also an inadequate awareness of their own disease activity and nutritional risk. As a result, some patients expressed doubts or resistance towards the prescribed treatment regimen, which reduced their acceptance and adherence to EN.

• P6: “I don’t think my condition is severe enough to warrant going home with a nasal feeding tube. It feels like the doctors just want me to buy this pump and the nutrient solution, maybe even profit from it. I can still move around—why would I need to take nutrition through a tube at home?”

These biases underscore the need for clear patient education on the role of EN across various disease stages, aiming to enhance patient acceptance and adherence to treatment plans.

Psychological burden

Heightened disease stigma

Compared with those receiving oral nutrition, patients undergoing nasogastric feeding often experience more pronounced stigma due to the visible nature of the treatment, making them more susceptible to unwanted attention or misunderstanding from others. While some gradually adapt over time and learn to relieve psychological stress through self-regulation, others continue to struggle with persistent feelings of shame. This phenomenon indicates that the visibility of illness and societal perceptions have a significant impact on patients’ psychological well-being, and individuals vary greatly in their coping mechanisms.

• P13: “Some colleagues would ask, ‘What are you drinking? Why are you drinking that?’”

• P7: “When I went out, people would give me looks, and it was embarrassing. Eventually, I got numb to it—I told myself, my body is my own, and I should just be happy in myself. I’m sick, not a criminal.”

• P9: “The hospital used white string and this clunky 3M tape to fix the nasogastric tube—it looked awful. I switched to transparent dressing and usually wear a mask to cover it when I go out. I also style my hair to hide the tube, so unless someone is looking closely, they don’t notice.”

• P2: “I’m still working on my mindset—I’m a middle school teacher, so it feels really awkward teaching with a tube in. I’ve overheard people talking about me, and it’s hard to shake that feeling.”

Increase in negative emotions

Several participants experienced persistent negative emotions while managing EN, including fear, anxiety, a sense of loss, low self-esteem and feelings of guilt toward family members.

• P13: “Once, I didn’t pay attention while sleeping, and the tube got blocked. Despite rinsing it, nothing helped, and I had to replace it. Now, I constantly fear it’ll happen again.”

• P2: “I often feel like people are talking about my condition behind my back. Sometimes, I wonder why I have this disease and feel very hopeless when I think about the future.”

• P1: “Since being diagnosed with Crohn’s, I’ve spent so much time in the hospital, which has been a huge burden on my parents. Now, with this feeding tube, they have even more to worry about. Sometimes, I feel deeply sorry for them.” (tearing up)

• P10: “Sometimes I catch people giving me strange looks, which makes me feel even guiltier.”

• P13: “Sometimes I bring the enteral nutrition to work and drink it there—people always ask about it, and it feels quite awkward.”

These responses reveal the complex emotional landscape associated with HEN, underscoring the need for comprehensive psychological support to help patients manage not only the technical but also the emotional challenges of chronic illness care.

Increased discomfort

Several participants reported experiencing notable discomfort related to EN, particularly with the oral nutritional solution’s poor taste, which often led to nausea. Others described persistent discomfort with nasogastric feeding, especially in the initial stages, and expressed the need to adapt to the sensation over time and find personalised ways to alleviate discomfort.

• P3: “I’m fairly stable now but still taking oral nutritional solution. I asked the doctor for it myself, and it helps a lot. But honestly, the taste is terrible; sometimes I feel like vomiting when I drink it. I have to convince myself each time that this is necessary for my recovery.”

• P11: “The doctor actually suggested nasogastric feeding since I’m underweight and malnourished, but I’m really reluctant to have a tube. I’ve been taking Buprenorphine orally, even though it tastes sour. So far, it’s working fine, though.”

• P5: “Initially, the sensation in my nose and throat was especially bothersome; my nose would get irritated, making me want to sneeze, and my throat felt as if something was stuck. It was very uncomfortable, though over time I’ve managed to tolerate it.”

• P8: “This tube is constantly in my nose, which makes my nasal passages sore, and the tape on my nose and ears is irritating.”

• P7: “During nasogastric feeding, my throat feels uncomfortable, but sucking on lozenges helps a bit.”

• P10: “When I have time, I remove the tape and hold the tube myself to prevent it from slipping and give my nose a break from the pressure.”

These accounts underscore the importance of developing tailored strategies and ongoing support to help patients manage the physical challenges of EN, thereby enhancing adherence and quality of life.

Adaptation challenges

Difficulties with dietary restrictions

Most participants reported significant disruption to their normal eating habits during nasal feeding, which deprived them of the sensory enjoyment and ritual associated with eating. While nasal feeding met their nutritional needs, it could not satisfy their desire for oral food intake or the pleasure of chewing. In contrast, oral EN imposed relatively fewer dietary restrictions, allowing for a more natural integration with daily eating habits.

• P1: “Eating through this tube feels like I’m not eating at all.”

• P4: “There’s no taste in my mouth. It smells so good when I see others chewing their buns.”

• P7: “Smelling cooked food makes me crave it, but I can’t eat it. I just chew gum and imagine I’m eating.”

• P11: “After falling ill, my body became weak and malnourished. Even with the oral nutrition formula, I’m still skinny and undernourished. I haven’t touched things like hotpot, which I used to love.”

Mobility limitations

Long-term nasal EN imposed significant limitations on participants’ mobility. The need to carry enteral feeding equipment and nutritional solutions restricted their daily activities. Additionally, some participants mentioned that nasogastric feeding made them feel hungry quickly but without enough energy to engage in physical activity.

• P6: “When traveling, I have to bring the tube and feeding equipment, which is very inconvenient and disrupts my work. After consulting my doctor, I switched to oral feeding while traveling.”

• P9: “Nasal feeding during the day really interfered with my classes.”

• P12: “I don’t travel much now because it’s too much of a hassle to carry nutritional solutions and medications.”

• P1: “When I’m feeling unwell, I rarely move around. I get hungry quickly after feeding, but I just want to sleep and don’t feel like going out.”

For young and middle-aged patients, who are typically in their study and work years, the restrictions imposed by prolonged nasal feeding, particularly during the daytime, caused significant disruptions.

Although patients using oral EN do not require device support, consuming nutritional formulas can still pose challenges to mobility. Bottled nutritional formulas are bulky and inconvenient to carry, whereas pouch-packed formulas are relatively lightweight and more flexible for use.

• P7: “The bottled formulas are big, heavy, and might break if dropped, making them inconvenient to take outside. The pouch-packed ones are better—lighter and less conspicuous.”

Social isolation

Some participants reported experiencing varying degrees of social restrictions during treatment. As eating is often a central aspect of social interaction, patients with CD often found themselves unable to dine with others or participate in food-related gatherings because of the need for strict dietary control. This made it difficult for them to integrate into group settings, as they constantly worried about dampening the mood. Over time, many chose to withdraw from social interactions.

• P3: “During group meals, there’s so little I can eat. Everyone else is eating, and I just feel uncomfortable. Eventually, I stopped going altogether.”

• P12: “Friends keep asking why I’m not eating. It gets annoying having to explain over and over. I also worry they’ll think I’m being overly dramatic.”

The social challenges were even more pronounced among patients receiving long-term nasal EN via an indwelling gastric tube. Compared with those taking oral formulas, these patients faced stricter dietary restrictions and more limited mobility. Additionally, the visible nature of the feeding tube often led to feelings of embarrassment or stigma, making them more prone to avoidance behaviours.

• P6: “When I bring nasal feeding to work, it limits my ability to meet clients and interact with others.”

• P13: “Even though my classmates show concern, I feel isolated. I’m not invited to meals or social gatherings anymore, and my social circle is shrinking.”

Sleep disturbances

Some participants chose to administer EN at night to avoid disrupting their daily life, work or studies. However, this choice led to sleep disturbances, including frequent awakenings due to issues with the feeding pump or the discomfort of feeding during sleep.

• P9: “Everything is fine except that my sleep is affected.”

• P4: “The nutrition pump alerts for blockages, but the sound is very repetitive… it wakes me up at night, and I have to get up and fix it. Sometimes my wife tells me to sleep while she monitors it for me.”

These sleep disruptions highlight an important challenge in balancing the demands of EN with maintaining a normal sleep pattern.

Objective challenges of HEN self-management in young and middle-aged patients with CD

Disease intractability

Many participants noted that recurrent disease episodes represented an intractable challenge. While clinical studies have demonstrated that combining pharmacotherapy with EN therapy can effectively induce remission in patients with CD,²⁶ and that the adjunctive use of EN is beneficial for maintaining remission,^{27 28 16} the inherent chronic and relapsing nature of CD remains a persistent challenge.¹ Despite the proven effectiveness of continuous EN in reducing relapse frequency,²⁹ patients must grapple with the reality of long-term, ongoing disease management, which presents a significant challenge in the context of home self-management of EN.

• P4: “I’ve had Crohn’s disease for 7 years. Over time, with regular medication and adherence to enteral nutrition, my relapses have decreased from 4 to 5 per year to just 1–2. Progress is evident, but I understand that with current medical treatment, this is the best outcome I can expect.”

Financial burden and disparity in medical resources

This study highlighted that patients with CD often face significant financial pressure, particularly those undergoing a combined treatment regimen of biologics and EN. While this combination therapy plays a critical role in improving clinical outcomes,26,28 ^{16 29} the ongoing financial strain remains a considerable challenge, given the chronic and relapsing nature of the disease.¹ Patients are confronted with the prospect of long-term, often lifelong, treatment, creating a persistent financial burden.

• P11: “I spend nearly 500 or 600 yuan each month on enteral nutrition, and each biologics treatment costs almost 2000 yuan. My monthly salary is just over 3000 yuan… the financial pressure is really overwhelming.”

• P14: “I don’t work, and my family relies on my husband’s income from working construction. We receive a government-issued low-income allowance of 600 yuan per month. I can’t afford to spend over 2000 yuan on each hospital visit. I had to buy nutrient pumps at low cost from other patients and reuse them after the tubes were rinsed…”

The disparity in medical resources further exacerbates these challenges. Patients in rural or underserved areas often lack timely access to specialised care, exacerbating the difficulties in managing EN.

• P12: “The healthcare facilities in our rural area are inadequate. Some local doctors aren’t even as experienced as I am, and they can’t administer long-term injections or manage nutrition pumps. When I face issues like tube blockages or dislodgement, I have no choice but to travel to larger hospitals in the city for help…”

Social support and the lack of telemedicine

Social support refers to the emotional, informational or material assistance provided to individuals by family, friends, social organisations and other community networks. In China, several Inflammatory Bowel Disease foundation organisations exist; however, this study revealed that their support efforts and dissemination reach are relatively limited. Moreover, most participants transitioned to HEN primarily due to medical necessity, but compliance issues arose, compounded by the inadequacy of telemedicine services and the absence of a robust long-term monitoring and management system.

• P4: “There were many things I wasn’t allowed to eat, but my parents thought those were ‘good’ for me and kept pushing me to eat them. I wanted to have control over my diet, but I felt helpless…”

• P5: “There are foundations that specialize in helping Crohn’s disease patients, but how do I apply for assistance? What are the requirements? I’ve never heard of them before.”

• P6: “When I was hospitalized, the director set up a WeChat group, but people are very busy. I can’t keep bothering them with small issues, like feeling slightly uncomfortable with my medication or whether I’ve taken too much or too little of the nutritional solution.”

• P2: “After being discharged from the hospital, we were really scared because there was no professional care available at home. We didn’t know how to solve the issues that arose. Once home, our self-control weakened, and sometimes we ate things we shouldn’t have. If we didn’t feel sick afterward, we considered ourselves lucky; but the next time, we regretted it—sometimes we’d forget the pain until it came back.”

Discussion

Recognising and addressing the challenges of HEN self-management in young and middle-aged patients with CD

Young and middle-aged patients represent a significant proportion of individuals diagnosed with CD.^{18 19} This age group is particularly pivotal in terms of professional, familial and personal development.¹⁹ The chronic and relapsing nature of CD exacerbates psychological stress and significantly influences treatment adherence.³⁰ The necessity of long-term enteral nutritional support presents a major challenge for patients, especially in balancing work, family and health responsibilities. In the current study, we found that young and middle-aged patients with CD encounter dual challenges, both subjective and objective, in managing HEN (as detailed in figure 2). Subjective challenges included heightened psychological burdens, difficulty adapting to lifestyle changes and insufficient early coping mechanisms. Objective challenges were reflected in financial strain, operational complexities and a lack of sufficient social support. These challenges not only impede treatment adherence but also have a substantial impact on the patients’ overall quality of life. The clear differentiation between subjective and objective factors provides valuable insight into the multifaceted nature of these challenges, facilitating the development of targeted interventions to address these manageable dilemmas effectively.

Figure 2. Analytical chart illustrating different self-management dilemmas in home enteral nutrition among young and middle-aged participants with Crohn’s disease. Note: the numbers indicate the frequency of each dilemma; green markers represent objective dilemmas; red markers represent subjective dilemmas.

Strengthening health education to enhance EN self-efficacy

The present study found that most participants lacked the foundational skills to manage EN in the early stages, had low confidence in their treatment and even exhibited cognitive biases. These findings align with previous research.²² Such factors not only diminished participants’ adherence to treatment but also limited the effectiveness of nutritional support and increased the difficulty of self-management, potentially leading to treatment interruptions and worsening conditions. Furthermore, the study revealed that some participants experienced fatigue from the long-term treatment demands due to the recurrent and chronic nature of CD. However, the perceived benefits of EN appeared to sustain long-term motivation to adhere to the treatment regimen. This contrasts with prior findings,¹¹ and the discrepancy may be attributed to the role of EN in reducing disease recurrence and maintaining remission.8,12 This suggests that while patient adherence may wane over time due to declining perceived benefits and treatment fatigue, EN is still regarded by some as a necessary component in managing chronic disease.

Based on the practical challenges expressed by participants during interviews, this study proposes a structured health education strategy to address key barriers encountered by young and middle-aged patients with CD undergoing HEN. Existing literature has confirmed that structured education plays a vital role in improving treatment adherence and caregiving capacity in patients with chronic diseases.³¹ First, it is essential to strengthen patients’ understanding of EN, including its therapeutic rationale, target populations, nutritional benefits and clinical significance in remission maintenance and relapse prevention. This foundational knowledge can enhance patients’ confidence and motivation to engage in treatment.³² Second, standardised training should be provided on the use and maintenance of related equipment such as feeding pumps and nasogastric tubes, as well as the preparation and administration of nutritional formulas, in order to reduce adverse events and anxiety caused by inadequate technical skills.³³ Third, psychological support should be integrated into education to address emotional challenges such as treatment fatigue, stigma and declining adherence over time. Peer support and coping strategies may help improve the treatment experience and sustain long-term engagement.³⁴ Finally, patients should be guided to develop self-monitoring skills, including tracking nutrient intake, identifying intolerance or complications and assessing disease fluctuations.³⁵ These skills, combined with ongoing communication with healthcare providers, can facilitate personalised adjustment and effective remote follow-up. Early implementation of such comprehensive and individualised education may improve the continuity and effectiveness of home-based EN and ultimately optimise long-term outcomes for patients with CD.

Emphasising patient needs to alleviate discomfort during EN

This study found that participants with CD often experienced discomfort during EN, particularly with oral formulas, which were described as unpalatable and prone to causing nausea or bloating. In recent years, various international formulations have been developed with improved palatability, offering both sweet and savoury options, as well as customisable flavour additives to enhance acceptance.^{36 37} However, in China, the range of EN products remains relatively limited in terms of taste profiles, and patients are frequently prescribed standard formulations with few options for personalization.³⁸ To improve adherence and treatment outcomes, individualised formula selection guided by dietitians is recommended.³⁹ Meanwhile, further innovation in product diversity and palatability tailored to patient preferences is warranted.⁴⁰

In contrast, tube-fed EN avoids issues related to poor taste, allows for larger volume delivery and maintains a more stable infusion rate. However, some participants reported nasopharyngeal discomfort due to the mechanical pressure of the nasogastric tube, as well as dissatisfaction with the inability to consume food orally, which aligns with findings from previous studies.^{9 20 21 41 37} Early intervention is essential to improve patient tolerance and overall experience. Healthcare providers should educate patients on proactive measures, such as ensuring proper placement of the gastric tube, engaging in distractions (eg, watching television or using a mobile phone), or using lozenges to mitigate discomfort. For patients unable to consume food orally, alternatives such as chewing gum or taking vitamin candies may help partially restore the satisfaction associated with oral feeding and improve compliance with nasal EN.

Additionally, some participants indicated that their daily life and work efficiency were notably impacted during nasal EN, with limited mobility and reduced sleep quality. These findings are consistent with previous studies.²⁰ The underlying reasons for these difficulties can be attributed to several factors: first, the nasal feeding device can hinder daily activities, particularly for patients who require frequent movement or engage in physical tasks. Second, the nocturnal infusion of nutrition may disrupt normal sleep, especially if patients fear tube blockages due to inadequate post-infusion care. To address these issues, healthcare providers should offer clear guidance through text and video materials, using platforms like mobile apps or public accounts to ensure patients can access relevant instructions anytime, thus enhancing their self-management capabilities. Furthermore, the use of portable nutrition pumps should be encouraged to minimise the impact on daily activities. Device design improvements, such as adding multimode reminder functions or the capability to automatically replenish warm water for tube flushing, could further reduce the risk of tube blockage.

It is important to recognise that patients’ preferences for enteral nutrition routes are shaped by their lifestyle, psychological tolerance and individual adaptability. Current evidence indicates that, when total caloric intake is adequate, both oral and nasogastric administration can be effective in improving nutritional status and controlling disease activity in patients with CD.⁴⁰ Therefore, clinical practice should adopt an individualised approach, offering patients the choice of administration route based on their needs, preferences and treatment goals.

Emphasising psychological care to assist patients in coping with adverse emotions and self-image reconstruction

This study found that a significant number of participants experienced varying degrees of depression, low self-esteem and other negative emotions. The use of a nasogastric tube further exacerbated their sense of shame and contributed to heightened adverse feelings. However, as their physical condition gradually stabilised and their understanding of the benefits of nutritional therapy deepened, some participants experienced emotional improvement. Previous research has demonstrated a strong association between negative emotions and physical symptoms, where such emotions not only intensify intestinal distress but also contribute to disease recurrence.⁴² Moreover, studies suggest that empathetic communication and emotional support from healthcare professionals can alleviate psychological distress and improve physical outcomes in patients with chronic illness.^{43 44} Therefore, healthcare professionals should routinely assess patients’ psychological well-being during diagnosis and treatment, offering compassionate care and a listening ear.

To help patients manage negative emotions effectively, healthcare workers should encourage open communication, allowing patients to express their feelings.⁴⁴ Positive psychological support can be provided through initiatives such as establishing WeChat groups, organising patient associations and holding fellowship activities, all of which promote a more active and positive approach to managing their condition.^{45 46} Additionally, in collaboration with psychologists, timely psychological interventions should be implemented for patients exhibiting clear signs of negative emotions, alleviating distress and enhancing overall quality of life.

Furthermore, this study also highlighted that some patients experienced an intensified sense of shame due to changes in their self-image, leading to social withdrawal and fear of interpersonal interactions. Research suggests that body image disturbances are strongly correlated with reduced psychological well-being and social functioning in patients with gastrointestinal and chronic conditions.⁴⁷ In response, nursing staff should offer guidance on protective or image-modifying techniques to help patients rebuild their self-image and restore their sense of self-worth. This support can help patients overcome social anxiety and feelings of helplessness, enabling them to gradually regain social adaptability and improve their overall well-being.⁴⁸

Enhancing the CD healthcare system

In this study, some participants reported experiencing significant financial strain. Several factors contribute to this phenomenon. First, the high costs associated with treatments, such as biologic therapies or faecal transplants, coupled with the chronic nature of CD, often necessitate frequent hospitalisations, leading to substantial medical expenses.⁴⁹ Second, young and middle-aged patients are typically the primary breadwinners in their families,¹⁹ bearing the responsibility of supporting elderly relatives and raising children, which increases family financial obligations. Furthermore, the decline or loss of earning capacity due to the disease exacerbates patients’ financial difficulties.⁵⁰ These financial burdens often heighten negative emotions, which in turn may diminish patients’ self-efficacy.

In response to these challenges, certain regions in China have made strides in improving the healthcare system. For instance, CD has been included in the reimbursement scope of chronic disease medical insurance, and reimbursement rates for outpatient services and hospitalisations have been increased, thereby alleviating the economic burden on patients compared with previous practices.⁵¹ Additionally, following the recommendations of the National Health Commission, some hospitals have introduced a daytime ward hospitalisation model for biologics used in inflammatory bowel disease.^{52 53} This system allows patients to book beds in advance via WeChat, reducing hospitalisation to 6–7 hours. If no complications arise, local patients can return to work or school on the same day, while out-of-town patients can resume their normal activities the following day. This model reduces the time commitment for both patients and their families, helping mitigate the social impact of the disease on daily life.^{53 54} However, challenges remain, including nursing risks related to patient identification and medication safety in day wards, and further improvements in relevant systems and institutions are needed.

Improving the social support system to enhance patients’ sense of tele-disease benefit

Most participants noted that their primary care and support originated from their families, while social support was relatively limited. Illnesses tend to change patients’ body image and increase negative emotions, causing them to reduce their social activities, which in turn reduces their acceptance of support from coworkers, relatives and friends. For this reason, medical staff should not only provide psychological care, but also encourage family and friends to give patients more emotional and life support.⁵⁵ At the same time, the construction of telemedicine platforms is crucial for improving patients’ self-management ability.⁵⁶ Through telemedicine platforms, healthcare professionals can set up online support groups, provide health education and training to patients, and give timely feedback and personalised advice based on the health data provided by patients, thus enhancing their sense of self-efficacy. Of course, medical institutions and related organisations, perhaps with continuous improvement, can enhance the publicity, promotion and popularisation of CD by adding the functions of mutual support platforms and public welfare programmes, so as to raise public and social concern and attention to the disease, thus enabling patients to obtain more accessible support and welfare resources.

Conclusion

This study demonstrates that young and middle-aged patients with CD face significant challenges in self-managing their condition with HEN due to both subjective and objective factors. Healthcare professionals should continuously strengthen patients’ belief in self-management of HEN, help them correctly understand their condition and EN, and avoid cognitive misconceptions. They should provide practical guidance on EN management, symptom monitoring and other aspects. At the same time, the role of family and peer education should be actively used to enhance social support and alleviate patients’ sense of disease burden. Additionally, healthcare professionals can combine expertise and evidence-based methods to develop a HEN self-management support programme tailored to patients with CD, using the functionality of digital platforms to provide more efficient support services to patients.

Limitation

The study faces certain limitations. First, the sample is restricted to a specific geographic region or medical institution, thereby limiting the generalisability of the research findings. Second, the data were collected through self-reported interviews, potentially introducing recall and response biases as participants may have unintentionally omitted details or felt compelled to provide socially desirable responses. Finally, while this study explored subjective and objective challenges, it did not account for variations in disease severity or treatment regimens, which might influence self-management experiences and needs. Future research could address these limitations by including longitudinal approaches and more diverse patient samples, potentially enhancing the relevance and applicability of the findings to broader clinical practices.

Data availability statement

Not applicable.