Long‐term implications of a multidisciplinary tube‐weaning program: Parental perspectives

Abstract

Objectives

Children who are unable to eat and drink orally require temporary or permanent enteral nutritional support via tube feeding. The objective was to describe a weaning program held at a children's rehabilitation hospital and to review the long‐term outcomes of the transition from tube nutrition to oral feeding.

Methods

The parents of 82 children who took part in the ALYN intervention program from 2011 to 2022 were requested to participate in a telephone survey to learn about their child's status related to eating, education, social wellbeing, and overall health. They also provided feedback concerning their experience with the tube‐weaning program and their current reliance on support for eating‐related issues.

Results

The parents of 35 (39%) children responded. Their mean ± SD age at the time of treatment were 2.1 ± 1.76, and the mean ± SD age at the time of the survey 8.85 ± 3.96 years. Their mean current zBMI is −0.7. Overall, parents were very satisfied with the child's eating (4.7 out of 5) ± 0.7, and few reported that the child's eating affected the family mealtime routine (2.1 out of 5) ± 1.3. The children's age at weaning was significantly correlated with parental reports of concern with the child's current eating ability, with younger ages at weaning associated with lower parental concern.

Conclusions

The data demonstrated that despite the complexity of the participants, most children succeed in achieving long‐term independent eating, good nutritional status, and social participation around mealtimes.

What is Known

• Long‐term tube dependency has functional and social ramifications.

• Weaning from tube dependence is a complex process entailing medical, nutritional, behavioral, and functional support.

• Currently, no gold standard protocol exists for management of the tube weaning process.

What is New

• A systematic and flexible weaning protocol is described, consisting of a comprehensive, three‐phase approach (preparatory, intensive weaning, and long‐term management).

• Parents reported long‐term satisfaction with the program, with most children eating appropriately and participating in family mealtime.

• A successful result may entail ongoing minimal or periodic tube feeding especially for children with complex or unstable medical conditions.

• Clinicians should monitor ongoing issues in children who were weaned, especially picky eating and constipation.

1. INTRODUCTION

Children maintain their growth and development by ingesting adequate calories and nutrients, by oral intake of food and liquids. When unable to eat and drink, they need enteral nutritional support via nasogastric (NG), naso‐duodenal, gastrostomy (GT), or jejunostomy tubes. ¹ These solutions address nutritional challenges; moreover, children who do not eat food orally are excluded from fundamental components of family life which influences their future social behavior and participation. Backman et al. ² highlighted the consequences for ordinary family life of children with a GT and food‐related challenges. The noneater grows up with insufficient experiences of participating in family mealtimes and socio‐cultural practices. Therefore, it is generally accepted that oral intake should be restored as a paramount goal of rehabilitation in accordance with the principles of the children and youth version of the World Health Organization's International Classification of Functioning, Disability, and Health (ICF)  ³ and ecocultural theory. ⁴ , ⁵

Among pediatric feeding disorders, the most common medical conditions leading to tube nutrition include complications of prematurity, congenital malformations, and neurodevelopmental and metabolic disorders. ⁶ There are also nonmedical issues, such as severe autistic behavior patterns or avoidant/restrictive food intake disorder. It is currently the accepted approach to replace an NG tube with a GT as soon as longer‐term nutritional support is expected. This is due to safety, efficacy, and dependability of a stoma compared to a NG tube and has been supported by Ricciuto et al. ⁷ who showed that children with an NG tube for longer than 3 months are at a higher risk of developing food refusal, thus compromising future weaning.

As more children with complex conditions survive, the number of tube‐fed children increases. This has led to the prevalence of feeding tube dependency, defined as “the reliance on a feeding tube to provide nutrition support to ensure growth and/or sustenance to aid recovery and/or maintain developmental trajectory despite being able to eat orally.” ⁸ (p. 1).

Beyond the child's oral and swallowing skills, weaning interventions should consider issues related to dysphagia, nutritional status, and medical condition, as well as provide support for parent–child interactions. Some programs mesh elements from different feeding therapy approaches, and most are held in controlled settings with multiple daily meal opportunities. A range of approaches to successfully transition children from tube to oral feeding have been reported ⁹ with differing aspects of approach and management. All include a multidisciplinary team of physicians, psychologists, nutritionists, speech, and language pathologists who work together. To date, little is known about their long‐term efficacy. ¹⁰

There are two major approaches to tube weaning, referred to as behavioral and hunger provocation. Behavioral interventions, the most reported and evaluated, aim to improve adaptive and diminish maladaptive behaviors. ¹¹ Their long‐term impact on tube‐feeding cessation has not been sufficiently documented. ¹⁰ , ¹² Hunger provocation, such as the well‐known “Graz model” ¹³ aims to establish self‐regulated oral intake; hunger induction follows rapid decrease in tube intake, and the acquisition of oral skills is assumed to follow hunger. ¹⁴ , ¹⁵ Reintroducing hunger satiety is essential since tube‐feeding tends to decrease a child's natural hunger signals. ¹⁶

The objectives of this study are to describe a weaning program held for over a decade at a children's rehabilitation hospital including characteristics of the patient population, its rate of success, and parental long‐term evaluation of the program's results.

2. ALYN'S CHILD‐CENTERED WEANING PROGRAM

ALYN Hospital's program is a combination of the behavioral intervention and appetite stimulation by hunger provocation approaches. ¹⁰ , ¹² It is based on the ICF's ³ overview of health, function, environmental, and personal factors as expressed through the children's overall medical and nutritional condition, together with their motor, sensory, and behavioral status as it relates to feeding and eating. Functional oral‐motor intervention is an integral component.

The term used at ALYN Hospital is “child‐centered weaning,” since, for each child, the program is continuously being re‐assessed, with a resetting of goals adjusted to the child's and family's progress. The ALYN protocol, illustrated in Figure 1, commences with a visit to the ambulatory multidisciplinary clinic where an overall assessment of five key components of weaning preparedness is evaluated: medical nutritional, functional, behavioral, and environmental (Table 1).

Figure 1.

The ALYN child‐centered weaning program protocol.

Table 1.

Five key components of weaning preparedness that are evaluated before initiation of the ALYN child‐centered weaning program protocol: Medical, nutritional, functional, behavioral, and environmental.

Factor	Examples of issues addressed
Medical	Absence of acute illness; No major operations planned for the next few weeks; Stable airways, no respiratory distress or cardiac insufficiency; Adequate control over seizure activity, recurrent vomiting, and constipation; Stable metabolic state (e.g., glucose levels managed).
Nutritional	Stable weight gain over period before the weaning, allowing for potential 5% weight loss; Adequate intake of nutrients and liquids; allergies monitored managed; Transition from gastro‐jejunal feeding to gastric; Able to establish bolus feeding of up to 45 min per feed.
Functional	Oro‐motor skills sufficient to allow basic feeding ability; Perform clinical and if necessary instrumented dysphagia assessment using video‐fluoroscopy or equivalent; Safe textures according to the International Dysphagia Diet Standardization Initiative scale. 17
Behavioral	Child is alert and shows interest and motivation; Is able to understand cause‐and‐effect and acquire an understanding of hunger and satiety; Initiate feeding environment habits such as sitting at the table and participating with family and peers at mealtimes.
Environmental	Parents understand the goals, are aligned with the process and are able to invest the required time to implement the changes to the child's and family's routines throughout the process.

Medical, psychological, nutritional, and oral motor therapies are planned with the child and family and provided over the following weeks or months. Clinical and instrumented swallowing evaluations are performed and then repeated as needed. The program starts with the Preparatory Phase (Figure 1), a preweaning outpatient follow‐up and intervention period, in which the five key aspects of weaning preparedness are addressed. Once children are medically stable and have attained the goals set for each key aspect, they are referred to the intensive stage when most or all of tube‐feeding gradually reduces. This is a planned, 3‐week program in a group setting, to establish a self‐regulated motivational eating pattern that is, Hunger Driven. Hunger is used as a short‐term motivator as oral feeding skills enable the child to eat at least one texture safely, but a hunger‐satiety feedback loop has yet to be established. At the start of the group intervention, tube feeding is reduced by at least 30% and gradually decreased during the 2nd week as children acquire feeding skills. By Week 3, most children are only fed orally even if they have not yet reached the desired full daily oral intake, with the understanding that the total intake will gradually increase as the child becomes more skilled. Morning and noon meals constitute the major intervention sessions. Each meal is tailored to a specific food texture and taste as well as type of utensils (adapted if necessary). Attention is given to meal setting, including seating, parental involvement, degree of independence. The goal is to develop a successful cycle of hunger and satiety to achieve an inner drive to eat full meals.

The period following the 3‐week intervention is a time of instability and fragility. Families need ongoing support, assistance in creating a daily meal schedule, adapted menus, continuing progress of oral‐motor function, and medical follow‐up (e.g., dehydration). Postweaning monitoring continues for at least 6 months including clinical follow‐up, intermittent interventions, and a team member available to assist parents between visits. Guidance to the family, community services specialists, and teachers at daycare and schools are integral parts of the follow‐up. Follow‐up visits take place 1 year following the cessation of tube feeding.

During the first few years of the program, the 3‐week intervention took place in an inpatient setting. After observing that properly prepared children did not require urgent medical and nursing care, and no cases of dehydration occurred, the program was transitioned to an outpatient format (with some exceptions in cases of parental stress or medical need). The intensive group phase currently includes a 3‐day a week, 3‐week program consisting of six monitored meals each week where the speech therapist, psychologist, and dietician provide ongoing customized changes and the pediatrician monitors the children at least once a week.

3. PARENTAL FEEDBACK

3.1. Participants

Children who took part in ALYN's tube‐feeding intervention from 2011 to 2020 included 82 infants and toddlers, 37 boys (45.4%) and 45 girls (54.9%), aged 3 months to 10.8 years (mean age = 1.6 years, SD = 1.9, median = 1.0), whose tube‐feeding continued at least 3 months beyond the resolution of the medical reasons that initially required tube placement. Descriptive and inferential analyses of these data are presented in a companion paper. ¹⁸

3.2. Procedures

Parents were contacted to request their participation in a telephone survey to elicit information about their child's current status related to eating, education, social wellbeing, and overall health (shown in Appendix A). They were requested to provide feedback concerning any concerns with the tube‐weaning program, and their current reliance on support for ongoing issues. All results were coded to ensure anonymity. This study was approved by the Committee for Research Ethics (#034‐20) in accordance with the requirements of the Declaration of Helsinki including informed consent.

4. RESULTS

Sixty‐five (77.3%) out of 82 children were completely weaned from tube feeding, 11 (13.4%) were partially weaned and six (7%) were not successfully weaned. The parents of 35 (16 boys, 19 girls) children (39%) responded to the telephone survey. The mean ± SD time passed since participation in the original tube weaning program until the survey was 6.7 ± 3.0 years, ranging from 1.5 to 11.5 years. Their mean age at the time of treatment was 2.1 ± 1.76 years and at the time of the survey was 8.85 ± 3.96 years. Their mean current zBMIa is −0.7. Almost 50% (n = 17) are educated in mainstream settings, 14% (n = 14) in special education, 5% in blended settings, and 5% homeschooled.

Parents rated their agreement with five positive statements about their child's current eating‐related behaviors on a 5‐point scale (1 = not at all to 5 = completely). Their mean ± SD agreement was 4.7 ± 0.7 when asked about overall satisfaction with their child's eating, 3.8 ± 1.3 about the similarity of their child's functional abilities to peers, 4.2 ± 1.2 whether their child eats the same food served to the whole family, 4.3 ± 1.2 whether their child eats independently, and 4.2 ± 1.1 whether their child eats at a single meal session. Parents also rated whether they agreed with four statements of apprehension regarding their child's current eating‐related behaviors. Their mean ± SD agreement was 1.7 ± 0.7 whether they were worried about their child's eating, 1.5 ± 1.1 whether their child needs external stimuli to eat, 2.1 ± 1.3 whether their child's eating habits affect the family's mealtime routine and 1.6 ± 1.0 whether their child has any difficulty in swallowing.

Overall, parents were satisfied with their child's current eating routine with 28 (80%) reported to sustain themselves on the regular family diet. Parents of 11 children (31.4%) indicated that there were no ongoing eating‐related difficulties. However, some parents reported concerns about continued eating difficulties (Table 2). The biggest concern, expressed by 14 parents (40%), was picky eating. In terms of the child's safety while eating, six children (17.1%) were reported to occasionally gag, five children (14.3%) tended to vomit more than their peers, with six children (17.1%) receiving medication for vomiting or reflux. Seven children (20%) had occasional constipation. The parents of seven children (20%) continue to seek professional help for their child's eating. Five children (14.3%) take some nutritional supplements (two orally and three via tube) and two children (5.7%) are fully tube dependent. Only six children (17.1%) reported limitations in the food textures they eat.

Table 2.

Percent of parents who reported that their child has eating‐related difficulties.

Ongoing Issues related to eating	Percent parents reporting
Medication for vomiting	14.3
Vomits more than peers	14.3
Receives some tube nutrition	14.3
Eats limited textures	17.1
Gags while eating	17.1
Constipated	20.0
Receives Nutritional supplements (oral or enteral)	20.0
Continues consultation with specialist about feeding issues	20.0
Picky eater	40.0

The parents of the children who were weaned at an older age reported significantly more concern with their child's current eating ability (r = 0.339, p = 0.046) and with their current abilities relative to peers (r = −0.513, p = 0.002).

5. DISCUSSION

This study examined the long‐term outcomes of a structured program designed to support children transitioning from tube nutrition to oral feeding. The novelty of the ALYN program is in its multistaged approach, its ongoing flexibility in tailoring the intervention to each child's particular medical condition, their developmental abilities, and the family's involvement. In the following discussion, we focus on several issues which provide key take‐away recommendations for tube‐weaning interventions.

The results of the survey showed that, overall, parents are satisfied with their children's long‐term post‐tube weaning eating status. The great majority have no‐to‐minimal concerns regarding their children's current eating behaviors and regard their diets as age‐appropriate. This rate of success is higher than reported in the few previously published studies. Marinschek et al. ¹⁹ surveyed 266 tube‐weaned children and reported that 30% of weaned children were unable to resume an age‐appropriate diet following tube‐feeding although the reasons for their lack of successful tube‐weaning were not described.

5.1. Mealtime participation

The ALYN Child‐Centered Weaning program takes place in a pediatric rehabilitation hospital and shares the vision of the WHO's ICF ³ approach, addressing overall rehabilitation goals as key outcomes. Participation in age‐appropriate social interactions is paramount. Most alumni of the weaning program are equal to their peers at mealtimes in independence and participation. Only 9% of parents indicated that their child does not regularly participate in mealtimes. This is an important accomplishment since participation is a basic element of social functioning. A child who cannot or will not sit at the table and eat the same food, is repeatedly excluded from opportunities to engage in behaviors that promote integration into family life, school, and social occasions. ²⁰

5.2. Importance of early weaning

The children's age at the time of weaning was significantly correlated to positive outcomes. Parents of children weaned at a younger age reported less current concern regarding their child's eating and described it as being similar to peers. This is in line with the consensus that reducing the developmental gap and building age‐appropriate skills at an earlier age enables children to reach a better long‐term outcome. However, early weaning likely also reflects better health, developmental status, and family involvement, whereas later weaning is likely correlated to more complex medical and developmental problems. Thus, although we start the process as early as possible, we caution against pushing children too fast at the expense of weight gain or stressful feeding routines.

5.3. Weight gain

Most studies indicate that many of the children are underweight at the initiation of weaning and remain so long‐term. This is attributed to the prevalence of children with primary conditions which affect growth. ²¹ Ongoing food refusal and aversion have been described as contributing to insufficient nutritional intake. ²² It is thus interesting to note that even though our participants reflect the same tendencies, the long‐term mean weight and height are close to the norm, and the zBMI reflects only a small deviance. We attribute this result to the ALYN program's approach that prioritizes the normalization of eating behavior at the cost of sometimes allowing minimal postweaning tube supplements to maintain weight. This is based on our observation that some children take longer to increase oral intake and may plateau in weight gain for months. In these cases, concern about the child's well‐being may create a vicious cycle in which professional, parental, and environmental stress could derail the intervention. We therefore recommend that minimal tube feeding in these cases be continued until the child is able to stabilize their weight gain.

5.4. Tube weaning in complex medical circumstances

Note that some children with complex issues resulting from chronic medical problems for whom there is no intention of ever removing the tube because it is expected that there will always be episodes of intermittent deterioration; they face expected medical setbacks, which result in a temporary inability to reach their nutritional requirements by eating orally. In these cases, we recommend that children keep the tube in place, even if not used regularly, and be allowed to receive tube feeding when needed.

5.5. Picky eating

Picky eating is a commonly described phenomenon with 6%–60% of all children described by parents as picky eaters ²³ regardless of nutritional status or tube dependence. The term describes a range of avoidant behaviors concerning textures, tastes, appearances, and inflexible eating practices. ²² Typically, picky eating improves with age, and is considered a normal developmental stage. However, non‐remitting picky eating is associated with pervasive developmental disorders. ²⁴ Parents of 40% of the participants see their child as a picky eater. In some cases, this may be an acquired issue as there is abundant evidence that children who require tube nutrition have oral aversion and food‐related sensory issues. ²⁵ We recommend introducing early oral exposure to a range of tastes and textures (even for children who are not yet eligible to start the weaning program) as a key to minimizing development of oral aversion. This may mitigate long‐term picky eating. Further follow‐up is needed to determine the extent to which the typical expected improvement is achieved by tube‐weaned alumni. Further research is needed to assess the benefit of interventions to treat postweaning picky eating. Our tendency is not to intervene unless the pickiness disrupts their participation in age‐appropriate, normative mealtimes.

5.6. Constipation

There was a relatively high rate of participating children (20%), both fully weaned and those still receiving nutritional supplements, who suffer from constipation. Constipation is a common and often overlooked problem in general. ²⁶ Children who eat less and move little are susceptible to chronic constipation. Furthermore, there is evidence that children who are picky eaters have a higher occurrence of constipation. ²⁷ Indeed, the weaning program addresses the need to educate parents in introducing high‐fiber food into the family diet and to maintain a good intake of liquids. This issue should be addressed at follow‐up visits and treated vigorously, including the use of age‐appropriate medication to maintain bowel health. ²⁸

5.7. Enduring feeding issues

Parents of nine children reported multiple ongoing difficulties regarding food, including medically complex children; 30% had significant associated social and family issues. This group is equally divided between children who are tube free (n = 4) and those who still require partial or full tube nutrition (n = 5). Since this group is small, it is difficult to pinpoint specific warning signs leading to this outcome. The children's difficulties vary and are sometimes directly related to medical diagnosis including those with esophageal atresia who suffer from vomiting or receive medication for reflux. In some cases, parents reported difficulty in eating certain textures, typical of children born with esophageal atresia. ²⁷ We expect that this occurs in other feeding rehabilitation program. This warrants further investigation beyond the scope of this paper.

5.8. Limitations

The study is limited by its focus on parental reporting without an objective assessment of children's current eating skills, nutritional status, and social participation. Typical to surveys of events that occurred up to a decade ago, ²⁹ response rates, as expected were only 39%. A higher response percentage would have allowed for additional statistical analysis.

6. CONCLUSIONS

Tube weaning is a complex process requiring ongoing assessments of many shifting parameters. A systematic and flexible approach includes three carefully managed and coordinated phases (preparatory, intensive weaning, and long‐term management). Parents reported satisfaction with the program, with most children eating according to their age and peers appropriately and participating regularly in family mealtimes; their eating is not a concern for their parents. However, clinicians should monitor ongoing issues, especially picky eating and constipation. We expect the number of tube‐dependent children eligible for weaning to continue to grow. Hence, the need for programs of this type will expand. Agility and constant tailoring of the program will maximize success.

CONFLICT OF INTEREST STATEMENT

The authors declare no conflict of interest.

PARENTAL SURVEY

1.

Please respond to each item. Note that items #1–16 refer to your child's current eating habits, nutritional factors or medical considerations.

#	Item	Response options
1	To what extent are you worried about your child's eating?	1 = not at all → 5 = completely
2	To what extent does your child eat the food served to the whole family?	1 = not at all → 5 = completely
3	To what extent does your child eat independently?	1 = not at all → 5 = completely
4	To what extent does your child participate in eating at a single session?	1 = not at all → 5 = completely
5	To what extent does your child need external stimuli to eat? (e.g., TV/play)	1 = not at all → 5= completely
6	To what extent does the child's eating habits affect the family agenda?	1 = not at all → 5 = completely
7	Does your child receive nutritional supplements from special medical foods?	1 = yes, 2 = no
8	Is your child currently receiving nutrition via tube feeding?	1 = yes, 2 = no
9	Is there a limit to the type of textures your child can eat?	1 = yes, 2 = no
10	Does your child have any difficulty in swallowing?	1 = yes, 2 = no
11	Does your child experience Is your child choking or suffocating while eating?	1 = yes, 2 = no
12	Is your child a picky eater?	1 = yes, 2 = no
13	Does your child vomit more than peers?	1 = yes, 2 = no
14	Does your child receive medication for vomiting or reflux?	1 = yes, 2 = no
15	Does your child suffer from constipation or is treated regularly for constipation?	1 = yes, 2 = no
16	Do you receive professional guidance on eating issues today?	1 = yes, 2 = no
17	How do you rate the duration of your child's tube‐weaning treatment?	1 = suitable, 2 = too long, 3 = too short
18	What was the weekly frequency of my child's treatment?	1 = 3X/wk, 2 = 5X/wk, 3 = other, 4 = do not recall
19	How do you rate the number of days/week of your child's treatment at ALYN?	1 = suitable, 2 = too little, 3 = too much, 4 = do not recall
20	How many treatment sessions did your child receive per day?	1 = suitable, 2 = too little, 3 = too much, 4 = do not recall
21	To what extent were you satisfied with the tube‐weaning program?	1 = not at all → 5 = completely

Blinder JN, Dror T, Weiss PL, Beeri M. Long‐term implications of a multidisciplinary tube‐weaning program: parental perspectives. JPGN Rep. 2024;5:454‐461. 10.1002/jpr3.12112

DATA AVAILABILITY STATEMENT

All data used in the study are available. The lead author has full access to the data reported in the manuscript.