Weaning children from prolonged enteral nutrition: A position paper

Clouzeau, H.; Dipasquale, Valeria; Rivard, L.; Lecoeur, Katia; Lecoufle, Audrey; Ru-Raguénès, Valérie Le; Guimber, D.; Leblanc, Véronique; Meur, Gaelle Malécot-Le; Baeckeroot, Sophie; Malleghem, Audrey Van; Loras-Duclaux, I; Rubio, Amandine; Genevois-Peres, Aline; Dubedout, Sophie; Bué-Chevalier, Mélanie; Bellaïche, M.; Abadie, Véronique; Gottrand, F.

doi:10.1038/s41430-021-00992-5

Cited by 9 publications

(9 citation statements)

References 75 publications

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“…Infants with congenital heart disease (CHD) may experience tachypnea, increased metabolic demand, and poor feeding endurance, resulting in growth faltering from inadequate oral intake of energy and nutrients [1,2]. Feeding tubes are frequently placed to meet the infant's nutritional requirements and maintain adequate growth during this critical time before and after cardiac surgery [1][2][3][4][5].…”

Section: Introductionmentioning

confidence: 99%

“…While enteral nutrition (EN) is beneficial, it is a medical intervention with significant side effects including oral aversion, psychological stress, and medical complications [3][4][5][6]. While feeding tube dependency (FTD) is well described in the literature, once the infant is medically stable, there is no best practice for enteral weaning [3,6].…”

Section: Introductionmentioning

confidence: 99%

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Home-Based Appetite-Guided Weaning of Enteral Nutrition of Infants with Congenital Heart Disease: A Preliminary Clinical Observation

Grentz,

Furfari,

Keifer

2024

Recent Prog Nutr

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Infants with a critical congenital heart defect are at high-risk for feeding difficulties, often necessitating feeding tube placement. Enteral nutrition (EN) support is initiated to meet nutritional requirements and promote growth pre- and post-operatively. Tube-fed infants with congenital heart disease (CHD) who achieve stable health status post-operatively are at risk of becoming feeding tube dependent (FTD). We report a clinical observation for infants with CHD based on survey results from <em>Growing Independent Eaters (GIE)</em>, a company that utilizes a home-based, appetite-guided method to transition infants and children from FTD to oral eating. GIE surveyed families who participated in a GIE-led wean from June 2018 to December 2018 for program evaluation, quality improvement, and outcomes measurement. The cohort of 14 infants (ages 0-12 months) was categorized as: CHD only, CHD plus other diagnoses, and no CHD plus other diagnoses. Median wean duration for infants with CHD only (Mdn = 18.0 days, IQR = 9.5-38.5) was similar to infants with CHD plus other diagnoses (Mdn = 25.0 days) but shorter than infants with medical conditions other than CHD (Mdn = 63.0 days, IQR = 28.0-90.0). Mean loss of body weight during the wean was similar for all groups. These observations highlight that the GIE method of enteral weaning provides FTD infants with and without CHD the necessary support to successfully wean off EN, albeit faster for those infants with a diagnosis of CHD. Further studies are now required using a larger cohort of infants to support these promising preliminary findings.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Home-Based Appetite-Guided Weaning of Enteral Nutrition of Infants with Congenital Heart Disease: A Preliminary Clinical Observation

Grentz,

Furfari,

Keifer

2024

Recent Prog Nutr

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Section: Introductionmentioning

confidence: 99%

“…In addition, parents have reported challenges bonding with their child through the lack of typical feeding routines and the broader impacts of sleep disturbance, restricted family activities and outings, altered family relationships and challenges associated with public perceptions of them and their child (Brotherton et al, 2007;Hopwood et al, 2020;Tarbell & Allaire, 2002). This increasing awareness of the impact of tube feeding on the child and family has stimulated research on best care practices for children who may be suitable for weaning (Clouzeau et al, 2021;Hopwood et al, 2020Hopwood et al, , 2021. However, tube weaning is complex and associated with significant challenges for the child and their parents/caregivers, as both parties transition through complex learning processes, in which (i) the child learns to recognize hunger/thirst, trust the mealtime process, develop oral skills required for chewing and swallowing and desensitize themselves to previously negative stimuli (i.e.…”

mentioning

confidence: 99%

“…Mothers' experiences and perceptions whilst undertaking tube weaning have been investigated, and key themes identified were maternal emotional stress, collaboration with the team and resumption of a more typical family life (Cipolla et al, 2022). Although the high levels of maternal responsibility and expertise in tube feeding have become increasingly acknowledged (Clouzeau et al, 2021;Hopwood et al, 2020Hopwood et al, , 2021Tarbell & Allaire, 2002), we are yet to understand the barriers, facilitators and emotional journey mothers and fathers experience during the tube weaning process. This understanding will help facilitate targeted and timely healthcare and is key to improving the experiences and outcomes for the child and family.…”

mentioning

confidence: 99%

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Parents' experiences of their child's transition from tube to oral feeding during an intensive intervention programme

Lively

McAllister

Doeltgen

2022

Child

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Background: Persistent enteral tube feeding beyond the point of medical and/or physical necessity provides important nutrition to a child but may have implications for their development, gastrointestinal tract and quality of life. Tube dependency can affect parent-child relationships and sibling and family dynamics and place additional medical demands upon parents. It is therefore important to transition children from tube to oral eating and drinking as soon as is medically safe to do so. Tube weaning requires a skilled team to support the transition to oral intake; however, access to experienced teams is inconsistent. Without transparent discussions with their treating teams, many parents are left to navigate tube weaning options independently.Methods: Fourteen parents were interviewed using semi-structured interviews. We explored the experiences of parents across their child's progression towards oral feeding, from the decision-making process to undertaking an intensive multidisciplinary tube weaning programme. Thematic analysis of the parents' stories shaped the development of seven themes.Results: Parents were unaware that tube weaning would be required and how that would be facilitated. They expressed a strong belief that their child could learn to eat-if afforded an opportunity. Furthermore, parents are prepared to disengage from current services if they feel they are not respected members of their child's therapeutic team. Three key learnings were identified relating to the need for tube exit plans, parents as key team members and parents as change agents.Conclusions: Parenting a tube-fed child, initiating and engaging in tube weaning, is a stressful and emotional journey. However, by establishing care partnerships, parents are willing to put trust in a process if provided with options and afforded autonomy, empowerment, acknowledgement and relevant support.

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Factors influencing gastrostomy tube feeding duration and nutrition outcomes in pediatric patients with Down syndrome: A descriptive cohort study

Aviles,

Giangiordano,

Evelyn

et al. 2024

J Parenter Enteral Nutr

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BackgroundFeeding difficulty is widely recognized in patients with Down syndrome, and many patients require gastrostomy tube (G‐tube) placement for nutrition. No reliable factors have been identified to predict the expected duration of G‐tube feeds in patients with Down syndrome. This descriptive cohort study aimed to determine the factors affecting the duration of G‐tube feeds. We also investigated change in body mass index (BMI) from G‐tube placement to discontinuation.MethodsMedical records of patients with Down syndrome seen by a pediatric gastroenterologist at a tertiary care center between September 1986 and December 2021 were reviewed. Data collection included demographics, anthropometrics, comorbidities, and feeding route. Comparison was performed between patients who discontinued G‐tube feeds and those who did not.ResultsTwo hundred twenty patients (45% female) were included. The median age at G‐tube placement was 5 months (interquartile range [IQR]: 0.2–1.3 years). There were 113 (51%) patients who discontinued G‐tube feeds, after a median duration of 31.6 months (IQR: 15.6–55.7 months). Tracheostomy was the only covariant associated with a longer duration of G‐tube feeds (158 months vs 53 months; P = 0.002). Neither age at G‐tube placement nor any comorbidities were associated with BMI status at discontinuation of G‐tube.ConclusionIn our cohort of patients with Down syndrome, age at placement of G‐tube did not impact the duration of G‐tube feeds. Most patients who had a G‐tube placed were likely to require enteral feeds for at least 1 year. Those who had a tracheostomy needed their G‐tube for a longer time.

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Weaning children from prolonged enteral nutrition: A position paper

Cited by 9 publications

References 75 publications

Home-Based Appetite-Guided Weaning of Enteral Nutrition of Infants with Congenital Heart Disease: A Preliminary Clinical Observation

Home-Based Appetite-Guided Weaning of Enteral Nutrition of Infants with Congenital Heart Disease: A Preliminary Clinical Observation

Parents' experiences of their child's transition from tube to oral feeding during an intensive intervention programme

Factors influencing gastrostomy tube feeding duration and nutrition outcomes in pediatric patients with Down syndrome: A descriptive cohort study

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