Enteral Tube Research Articles

A hidden challenge: exploring food refusal in prisons

British Journal of NursingVol. 32, No. 8 CommentA hidden challenge: exploring food refusal in prisonsDonna PhillipsDonna Phillips(E-mail Address: [email protected])Head of Safeguarding, Spectrum Community Health CIC, WakefieldSearch for more papers by this authorDonna PhillipsPublished Online:21 Apr 2023https://doi.org/10.12968/bjon.2023.32.8.S6AboutSectionsView articleView Full TextPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack CitationsPermissions ShareShare onFacebookTwitterLinked InEmail View article References Department of Health. Guidelines for the clinical management of people refusing food in immigration removal centres and prisons. London: DH: 2010 Google ScholarHome Office. Detention services order 03/2017. Care and management of detained individuals refusing food and/or fluid. 2022. https://tinyurl.com/yhfua8c5 (accessed 6 April 2023) Google ScholarNational Institute for Health and Care Excellence. Nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition. Clinical guideline CG32. 2017 (updated from 2006). https://tinyurl.com/yewcx292 (accessed 6 April 2023) Google ScholarNHS England Health and Justice. Health and justice. 2023. https://www.england.nhs.uk/commissioning/health-just (accessed 3 April 2023) Google Scholar FiguresReferencesRelatedDetails 20 April 2023Volume 32Issue 8ISSN (print): 0966-0461ISSN (online): 2052-2819 Metrics History Published online 21 April 2023 Published in print 20 April 2023 Information© MA Healthcare LimitedPDF download

Post-Stroke Infections: Insights from Big Data Using Clinical Data Warehouse (CDW).

This study analyzed a digitized database of electronic medical records (EMRs) to identify risk factors for post-stroke infections. The sample included 41,236 patients hospitalized with a first stroke diagnosis (ICD-10 codes I60, I61, I63, and I64) between January 2011 and December 2020. Logistic regression analysis was performed to examine the effect of clinical variables on post-stroke infection. Multivariable analysis revealed that post-stroke infection was associated with the male sex (odds ratio [OR]: 1.79; 95% confidence interval [CI]: 1.49-2.15), brain surgery (OR: 7.89; 95% CI: 6.27-9.92), mechanical ventilation (OR: 18.26; 95% CI: 8.49-44.32), enteral tube feeding (OR: 3.65; 95% CI: 2.98-4.47), and functional activity level (modified Barthel index: OR: 0.98; 95% CI: 0.98-0.98). In addition, exposure to steroids (OR: 2.22; 95% CI: 1.60-3.06) and acid-suppressant drugs (OR: 1.44; 95% CI: 1.15-1.81) increased the risk of infection. On the basis of the findings from this multicenter study, it is crucial to carefully evaluate the balance between the potential benefits of acid-suppressant drugs or corticosteroids and the increased risk of infection in patients at high risk for post-stroke infection.

Nutritional and metabolic characteristics of critically ill patients admitted for severe toxidermia

Drug-induced toxidermia is an idiosyncratic adverse skin reaction that may become life-threatening in a small portion of patients, requiring intensive care unit (ICU) admission. The treatment recommendations are extrapolated from those of major burns, while prospective data remain sparse. The objective was to observe the application of these recommendations in patients treated in a burn ICU. Retrospective cohort study including patients requiring ICU between 2006 and 2020 in a tertiary university hospital. Age >18 years. Patients were categorized as Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN), or other toxidermia. severity scores, body surface area (BSA) involvement, nutritional and metabolic variables, trace element status, outcome variables. Descriptive statistics: median [IQR]. Altogether 35 patients were included (27 SJS/TEN and 8 "other"), aged 58 [48; 69] years. Skin involvement was 45% [30; 60] of body surface, 17 patients required mechanical ventilation, and length of ICU stay was 16 [6.5; 26] days. Hospital mortality was 23%. Fluid resuscitation requirements were moderate, despite intense inflammation (admission CRP (144 [89; 218] mg/L). The first 2 weeks' energy and protein intakes were below recommendations (p<0.0001), lowest with oral feeding. Indirect calorimetry showed high energy expenditure in 11 patients (30.4 [23.9; 35.5] kcal/kg) resulting in negative energy balances (mean-245 kcal/day). Copper and zinc levels were below reference range during the first week, the low copper values being a novel finding. Trace elements should be monitored. The cohort was underfed with intakes lower than our ICU protocols, partly explained by short intubation times, and mucocutaneous involvement complicating the management and placement of feeding tubes. Oral feeding was least efficient and may become an indication for supplemental parenteral nutrition in the absence of an enteral feeding tube. gov Identifier: NCT05320653.

Delivery of sodium zirconium cyclosilicate through gastric and enteral feeding tubes.

In an effort to expedite the publication of articles, AJHP is posting manuscripts online as soon as possible after acceptance. Accepted manuscripts have been peer-reviewed and copyedited, but are posted online before technical formatting and author proofing. These manuscripts are not the final version of record and will be replaced with the final article (formatted per AJHP style and proofed by the authors) at a later time.

Choosing wisely: Enteral feeding tube selection, placement, and considerations before and beyond the procedure room.

When an enteral feeding tube (EFT) is placed, it is not always known how long this nutrition support intervention will be needed. As a result, the type of device the patient originally has placed may not match the function it is required to serve or the lifestyle needs of the patient throughout their enteral nutrition journey. Medicare considers an EFT a prosthetic device, as it is replacing a permanently inoperable or nonfunctioning organ. If we think about an EFT the same way we think about a prosthetic limb, one that needs to be customized to meet all of the patient's functional and lifestyle needs, we can also begin to think beyond the procedure room and carefully consider a variety of factors that impact the patient at home receiving enteral nutrition. Proper fit, function, and style is essential in order for the patient to have a positive relationship with their EFT, contributing to their successful home enteral nutrition experience. Clinicians who care for these patients in any setting and in any capacity would benefit from enhancing their understanding of available EFT options, their design components, and available methods of placement. Many home care and outpatient clinicians adopt the role of patient advocate as it relates to a patient's enteral nutrition journey, and this expanded knowledge could be used to benefit the patient by improving their overall enteral nutrition experience and ultimately their relationship with their "prosthetic."

Blenderized food tube feeding in very young pediatric patients with special healthcare needs.

Up to 85% of children with severe developmental disabilities have feeding disorders and require enteral tube feeding. Many caregivers desire blenderized tube feeding (BTF) instead of commercial formula (CF) for their child, citing a desire for a more physiologic feeding, to reduce gastrointestinal (GI) symptoms and/or promote oral intake. In this retrospective, single-center study, medical records (n = 34) of very young children (aged ≤36 months) with severe developmental disabilities were reviewed. Comparisons of growth parameters, GI symptoms, oral feeding, and GI medication use were made between the initial introduction of BTF and again at the last patient encounter when the children aged out of the program. Of the 34 charts reviewed (16 male and 18 female patients), comparisons between baseline BTF introduction and the last patient encounter indicated reductions in adverse GI symptoms, significant GI medication reduction (P = 0.000), increased oral food intake, and nonsignificant improvements in growth parameters. These positive outcomes were realized whether children received full or partial BTF or type of BTF formulation. Consistent with similar research studies, transitioning very young children with significant special healthcare needs from CF to BTF resulted in improvement in GI symptoms, reduced need for GI medications, supported growth goals, and contributed to improved oral feeding.

Complications and outcomes of gastrostomy versus nasogastric tube feeding in paediatric allogeneic bone marrow transplant: A prospective cohort study

The intensive conditioning regimens administered during bone marrow transplant (BMT) frequently cause mucositis, gastrointestinal toxicity and reduced oral intake. Children are consequently at risk of malnutrition. First-line nutrition support is recommended as enteral nutrition (EN). Nasogastric tube (NGT) is the mainstay for administration. Gastrostomies provide an alternative, but there is limited evidence of their efficacy and safety in paediatric BMT. This study aimed to compare enteral tube complications and nutritional and clinical outcomes between children with a gastrostomy versus NGT throughout BMT. A prospective cohort study was conducted at a single centre in the United Kingdom. During pre-admission consultations families were offered choice of a prophylactic gastrostomy or NGT. Children undergoing allogeneic BMT were recruited from April 2021 to April 2022. Data compared between children with either tube included: tube complications, change in weight, body mass index and mid-upper-arm circumference, calorie, protein and fluid intake, timing and use of EN and parenteral nutrition, survival, graft-versus-host disease and length of admission. Following BMT, data were collected weekly for the first six weeks from electronic records, monthly thereafter from 3-day averaged food diaries and clinic assessments, until six months post-BMT. Nineteen children with NGT were compared to 24 with a gastrostomy. Of gastrostomy complications, 94.2% (129/137) were minor, mechanical issues being most common (80/137). Dislodgement comprised 80.2% (109/136) of NGT complications. No significant differences were seen between tubes on nutritional, anthropometric and clinical outcomes. Gastrostomies were popular with families, relatively safe, associated with mostly minor complications and similarly effective as NGTs in supporting children's nutritional intake and status. Where an NGT may not be tolerated, a prophylactic gastrostomy could be considered. Placement of either tube requires balancing their risks, benefits, the child's nutritional status, conditioning, expected duration of EN and family preferences.

Introduction to interventional oncology: A COG Diagnostic Imaging Committee/SPR Oncology Committee White Paper.

Interventional radiology (IR) is a valuable resource when caring for pediatric solid tumor patients. As minimally invasive, image-guided procedures become more relied upon to answer challenging diagnostic questions and provide alternative therapeutic options, IR is poised to become a contributing member of the multidisciplinary oncology team. Improved imaging techniques allow for better visualization during biopsy procedures, transarterial locoregional treatments have the potential to deliver targeted cytotoxic therapy while limiting systemic side effects, and percutaneous thermal ablation can be used to treat chemo-resistant tumors of various solid organs. Additionally, interventional radiologists are able to perform routine, supportive procedures for oncology patients that include central venous access placement, lumbar punctures, and enteric feeding tube placements with high levels of technical success and excellent safety profiles.

Using an Electromagnetic Guidance System for Placement of Small-Bowel Feeding Tubes to Reduce Feeding Start Times.

Cardiothoracic surgery patients have an increased risk for aspiration and may require enteral access for nutrition. In a cardiothoracic intensive care unit, feeding start times were delayed because of scheduling conflicts with support services. An electromagnetic device (Cortrak 2 Enteral Access System, Avanos Medical) was introduced to allow advanced practice providers (nurse practitioners and physician assistants) to independently establish postpyloric access and reduce dependence on ancillary services. A quality improvement study was performed. Pre- and postimplementation data included order time, service arrival, tube placement time, tube positioning, and feeding start times for 207 placements. Pre- and postimplementation surveys were conducted to evaluate advanced practice provider satisfaction with enteral tube placement practices. Feeding start time for initial placement decreased by 35.5% (15.6 hours to 10 hours); for subsequent placement, by 55.2% (15.5 hours to 7.0 hours). Assistance by support services decreased by 80.4% (before implementation, 100 of 100 placements [100%]; after implementation, 21 of 107 placements [19.6%]; P < .001; ϕ = 0.815). Overall, advanced practice provider satisfaction increased. Most participants said that using the electromagnetic device was faster, nutrition was delivered sooner, and implementation was a valuable practice change. Using an electromagnetic device decreased feeding start times, reduced the need for support services, and increased advanced practice provider satisfaction with small-bowel feeding tube placement practices.

Prolonged Enteral Tube Feeding in Infants With a Functional Single Ventricle Is Associated With Adverse Outcomes After Fontan Completion

To define the baseline characteristics of long-term tube-fed (TF) single ventricle patients, investigate associations between long-term enteral tube feeding and growth, and determine associations with long-term outcomes after Fontan procedure. We performed a retrospective cohort study of patients in the Australia and New Zealand Fontan Registry undergoing treatment at the Royal Children's Hospital, the Children's Hospital at Westmead, Royal Melbourne Hospital, and Royal Prince Alfred Hospital from 1981 to 2018. Patients were defined as TF or non-tube-fed (NTF) based on enteral tube feeding at the age of 90days. Feeding groups were compared regarding body mass index (BMI) trajectory, BMI at last follow-up, and long-term incidence of severe Fontan failure. Of 390 patients (56 [14%] TF, 334 [86%] NTF), TF was associated with right ventricular dominance, hypoplastic left heart syndrome, Norwood procedure, increased procedures prior to Fontan, extracardiac conduit Fontan, Fontan fenestration, and atrioventricular valve repair/replacement. TF patients were less likely to be in the higher compared with lowest 0-6month BMI trajectory (P<.01; P=.03), had lower 6month weight-for-age z-scores (P<.01) and length-for-age z-scores (P=.01). TF were less likely to be overweight/obese at pediatric follow-up (hazard ratio [HR]=0.31, 95% CI: 0.12-0.80; P=.02) and more likely to be underweight at adult follow-up (HR=16.51; 5% CI: 2.70-101.10; P<.01). TF compared with NTF was associated with increased risk of severe Fontan failure (HR=4.13; 95% CI=1.65-10.31; P<.01). Prolonged infant enteral tube feeding is an independent marker of poor growth and adverse clinical outcomes extending long-term post-Fontan procedure.

Feeding gastrostomy and duodenostomy using the round ligament of the liver versus conventional feeding jejunostomy after esophagectomy: a meta-analysis.

Esophageal cancer patients require enteral nutritional support after esophagectomy. Conventional feeding enterostomy to the jejunum (FJ) is occasionally associated with small bowel obstruction because the jejunum is fixed to the abdominal wall. Feeding through an enteral feeding tube inserted through the reconstructed gastric tube (FG) or the duodenum (FD) using the round ligament of the liver have been suggested as alternatives. This meta-analysis aimed to compare short-term outcomes between FG/FD and FJ. Studies published prior to May 2022 that compared FG or FD with FJ in cancer patients who underwent esophagectomy were identified via electronic literature search. Meta-analysis was performed using the Mantel-Haenszel random-effects model to calculate Odds Ratios (ORs) with 95% confidence intervals (CIs). Five studies met inclusion criteria to yield a total of 1687 patients. Compared with the FJ group, the odds of small bowel obstruction (OR 0.09; 95% CI, 0.02-0.33), catheter site infection (OR 0.18; 95% CI, 0.06-0.51) and anastomotic leakage (OR 0.53; 95% CI, 0.32-0.89) were lower for the FG/FD group. Odds of pneumonia, recurrent laryngeal nerve palsy, chylothorax and hospital mortality did not significantly differ between the groups. The length of hospital stay was shorter for the FG/FD group (median difference, -10.83; 95% CI, -18.55 to -3.11). FG and FD using the round ligament of the liver were associated with lower odds of small bowel obstruction, catheter site infection and anastomotic leakage than FJ in esophageal cancer patients who underwent esophagectomy.

Factors Contributing to Complete Oral Intake in Dysphagic Stroke Patients with Enteral Feeding Tubes in Convalescent Rehabilitation Wards

This study investigated the factors contributing to complete oral intake (COI) in dysphagic stroke patients with enteral feeding tubes in the local clinical setting. Data of patients with percutaneous endoscopic gastrostomy (PEG) or nasogastric tube (NGT) feeding on admission to convalescent rehabilitation wards (CRWs) were extracted from the Kaga Regional Cooperation Clinical Pathway for Stroke database for multiple centers including 19 acute care hospitals and 11 hospitals with CRWs. Patients were divided into two groups based on their status regarding COI or incomplete oral intake (ICOI) at discharge. Logistic regression analysis with forced-entry variables was used to identify factors contributing to COI. On discharge from CRWs, COI and ICOI were observed in 140 and 207 cases, respectively. The COI group was younger, had a higher rate of initial stroke, higher Functional Oral Intake Scale (FOIS) scores, higher Functional Independence Measure (FIM) motor and cognitive scores, higher Body Mass Index (BMI), lower rate of patients with PEG, and shorter stays in acute care wards. Logistic regression analysis with forced entry revealed that younger age; initial stroke; higher FOIS score, FIM cognitive score, and BMI; and shorter stay in the acute care ward contributed to COI. The primary factors contributing to COI in dysphagic stroke patients with enteral feeding tubes were younger age, initial stroke, higher swallowing and cognitive function, good nutritional status, and shorter stay in the acute care ward.

Profile of oropharyngeal dysphagia patients in a teaching hospital in Northern Brazil: a descriptive cross-sectional study.

The aim of this study was to describe the profile of patients with oropharyngeal dysphagia in a teaching hospital in the public health system in northern Brazil. This is a descriptive cross-sectional study. All procedures of this study were approved by the ethics committee. A convenience sample composed of participants aged >18 years, of both sexes, with any underlying pathology admitted to the medical clinic on exclusive oral feeding, alternatively enteral or gastric tube feeding (Gastrostomy), or associated by both routes, whose swallowing assessment was performed by a Speech-Language Pathologist. Data from the database/medical records were investigated from March 2020 to September 2021. The sample consisted of 44 patients diagnosed with oropharyngeal dysphagia, with a higher frequency of males (63.64%) aged over 60 years (70.45%). Almost half of the evaluated patients were diagnosed with neurological disorders (47.73%) and had dysphagia associated with other underlying diseases (31.82%). Excluding patients with neurological disorders, trauma/polytrauma, and respiratory disorders from the last group, some patients (11.36%) had two concomitant underlying diseases. According to the sample of this study, the profile of oropharyngeal dysphagia patients includes pneumonia, respiratory failure, bronchoaspiration, and the consequent need for ventilatory support.

Washed microbiota transplantation stopped the deterioration of amyotrophic lateral sclerosis: The first case report and narrative review.

Amyotrophic lateral sclerosis (ALS) is known as a progressive paralysis disorder characterized by degeneration of upper and lower motor neurons, and has an average survival time of three to five years. Growing evidence has suggested a bidirectional link between gut microbiota and neurodegeneration. Here we aimed to report one female case with ALS, who benefited from washed microbiota transplantation (WMT), an improved fecal microbiota transplantation (FMT), through a transendoscopic enteral tube during a 12-month follow-up. Notedly, the accidental scalp trauma the patient suffered later was treated with prescribed antibiotics that caused ALS deterioration. The subsequent rescue WMTs successfully stopped the progression of the disease with a quick improvement. The plateaus and reversals occurred during the whole course of WMT. The stool and blood samples from the first WMT to the last were collected for dynamic microbial and metabolomic analysis. We observed the microbial and metabolomic changing trend consistent with the disease status. This case report for the first time shows the direct clinical evidence on using WMT for treating ALS, indicating that WMT may be the novel treatment strategy for controlling this so-called incurable disease.

Innovation in clinical nutrition: single dose in intermittent enteral tube feeding

The home enteral nutrition practical guidelines of the European Society for Clinical Nutrition and Metabolism (ESPEN) published in 2020 includes 61 recommendations. A significant number of them are related to safety parameters, prevention of complications, control strategies and quality of life of patients and family members. These are the same reasons why single-dose units are usually used on all medicines. Enteral feeding is one of the few treatments that has not yet reached the single dose and most patients with intermittent enteral nutrition by gastric tube have a dose which differs from pharmaceutical presentation. This leads to the risk of complications arising from errors in the administration that should not be forgotten and that affect mostly elderly and highly dependent populations. The innovation that consists in the creation of 375 ml single-dose containers for enteral feeding following the physiological schedules of the takes can solve most of them and meets the energy protein requirements and recommendations on dosage developed by scientific societies for patients at higher risk.

Administration of ciprofloxacin through a nasogastric tube in pediatric oncology and stem cell transplantation patients.

Pediatric oncology and hematopoietic stem cell transplantation patients are facing many gastrointestinal side effects of chemotherapy, including nausea, vomiting, mucositis, and diarrhea. International guidelines advise early enteral tube feeding as the first option of nutritional support in children undergoing myeloablative hematopoietic stem cell transplantation. When using enteral feeding tubes for nutritional purposes as well as drug administration, some pharmaceutical, nursing, and technical issues have to be taken into account. Ciprofloxacin is a fluoroquinolone, widely used because of its broad spectrum antimicrobial activity and favorable pharmacokinetic properties. However, its co-administration with polyvalent cations (as present in enteral feeding) makes the absorption of ciprofloxacin more difficult and may alter the pharmacokinetic parameters. Literature data are conflicting on how long the enteral feeding should be discontinued for patients receiving ciprofloxacin via an enteral feeding tube, ranging from 2 h before to 6 h after the administration of ciprofloxacin. Our research question was guided by challenges and concerns of nurses about the delay time between ciprofloxacin administration and restart of the enteral feeding without compromising the nutritional intake of the children. Our guideline was adapted, nurses were instructed accordingly, and patient leaflets with correct information were created.

Therapeutic drug monitoring following crushed administration of delayed-release posaconazole tablets via enteral feeding tubes.

Therapeutic drug monitoring following crushed administration of delayed-release posaconazole tablets via enteral feeding tubes.

Gastrointestinal factors associated with risk of bronchiectasis in children.

To evaluate gastrointestinal (GI) risk factors for bronchiectasis in children. We hypothesized that upper GI tract dysmotility would be associated with increased risk of bronchiectasis. Subjects in this retrospective cohort study included those evaluated for persistent pulmonary symptoms in the Aerodigestive Center at Boston Children's Hospital who underwent chest computed tomography (CT) between 2002 and 2019. To determine gastrointestinal predictors of bronchiectasis, baseline characteristics, comorbidities, enteral tube status, medications received, gastroesophageal reflux burden, adequacy of swallow function, esophageal dysmotility, gastric dysmotility, and neutrophil count on bronchoalveolar lavage (BAL) were compared between patients with and without bronchiectasis. Proportions were compared with Fisher's exact test and binary logistic regression with stepwise selection was used for multivariate analysis. ROC analyses were utilized to compare BAL neutrophils and bronchiectasis. Of 192 subjects, 24% were found to have evidence of bronchiectasis on chest CT at age 7.9 ± 0.5 years. Enteral tubes (OR 5.77, 95% CI 2.25-14.83, p < 0.001) and increased BAL neutrophil count (OR 5.79, 95% CI 1.87-17.94, p = 0.002) were associated with increased risk while neurologic comorbidities were associated with decreased risk (OR 0.24, 95% CI 0.09-0.66, p = 0.006). Gastroesophageal reflux was not found to be a significant risk factor. Neutrophil counts >10% had 72% sensitivity and 60% specificity for identifying bronchiectasis. Enteral tubes were associated with significantly increased risk of bronchiectasis but gastroesophageal reflux was not. Providers should consider obtaining chest CT to evaluate for bronchiectasis in children found to have unexplained elevated BAL neutrophil count.

Impact of Early Enteral Nutrition on Delayed Gastric Emptying and Nutritional Status After Pancreaticoduodenectomy.

Although early enteral nutrition (EEN) is an accepted practice after pancreaticoduodenectomy (PD), the impact of EEN on postoperative complications or nutritional status remains unclear. We aimed to investigate the impact of EEN on delayed gastric emptying (DGE) and nutritional status after PD. A total of 143 patients underwent PD between January 2012 and September 2020. We excluded patients who underwent a two-stage pancreatojejunostomy, in whom the enteral tube was accidentally pulled out, or with insufficient information in their medical records. The incidence of postoperative complications was compared between patients who received EEN (EEN group, n = 21) and those who did not (control group, n = 21) after propensity score matching. Univariate and multivariate analyses were performed to identify the risk factors affecting the incidence of these complications. Nutritional status was assessed at postoperative months 1, 3, and 6. The incidence of grade B/C DGE in the EEN group was significantly lower than that in the control group (4.8% vs. 28.6%, p = 0.03). There was no significant difference in overall morbidity, incidence of any other postoperative complications, or all-grade DGE. In multivariate analysis, EEN was associated with a reduction in the incidence of grade B/C DGE (p < 0.01). In the analysis of nutritional status, EEN was significantly associated with better nutritional status at postoperative month 1. EEN can lead to a lower clinically relevant DGE rate and better nutritional status in the early postoperative period in patients undergoing PD.

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

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. 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 multi-disciplinary tube weaning programme. Thematic analysis of the parents' stories shaped the development of seven themes. 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. 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.