Abstract:Objectives:
This study investigated biological factors, which may influence the time taken for children to wean from enteral to oral intake.
Methods:
Retrospective case-note audit of 62 tube-fed children (nasogastric or percutaneous endoscopic gastrostomy) aged 6 months to 8 years, participating in an intensive tube weaning program. Program design included family-focused mealtimes, child autonomy, and appetite stimulation. A regression model was develop… Show more
“…Once parents realized enteral feeding would not be a quick fix, what mattered changed, from getting through a difficult but short period, to thriving despite the tube: Early on you think this is temporary, done in a few weeks' time. Then nine months later, you are still there, so I need to work out and say, “What are we going to plan for the long term?”This signals the importance of tube exit planning and other strategies that clarify the expected duration of tube feeding and the uncertainties that might surround this (Lively, McAllister, & Doeltgen, 2019; Syrmis et al, 2019).…”
Section: Resultsmentioning
confidence: 99%
“…Two rounds of coding were conducted, each of which involved multiple iterations to identify and refine themes, and followed MacQueen, This signals the importance of tube exit planning and other strategies that clarify the expected duration of tube feeding and the uncertainties that might surround this (Lively, McAllister, & Doeltgen, 2019;Syrmis et al, 2019).…”
Background: Complex feeding difficulties requiring enteral (tube) feeding affect everyone around the child. Parents experience additional stress and are at risk of social isolation. This study investigated the strategies families develop and use to adjust and adapt to enteral feeding so they were not just surviving but thriving as a family. Methods: Twenty parents whose children had been or continued to be enterally fed were interviewed, four of them twice as their experience of enteral feeding progressed. Learning theory was used to conceptualize findings in terms of changing use of tools that mediated parents' response to feeding-related challenges. Results: Parents encountered dilemmas relating to enteral feeding: maintaining participation in everyday activities, managing responses to the use of tubes for feeding, and doing what feels right for their child. They used four kinds of mediating tools to overcome these: memory aids and readiness tools, metaphors and narratives, repurposed everyday objects and personalized routines and materialities. Conclusions: This novel account of tool used to resolve dilemmas provides an empirically and theoretically grounded basis for supporting parents to thrive despite the challenges of enteral feeding. Specifically, it can guide information given to help parents anticipate and cope with dilemmas arising from enteral feeding.
“…Once parents realized enteral feeding would not be a quick fix, what mattered changed, from getting through a difficult but short period, to thriving despite the tube: Early on you think this is temporary, done in a few weeks' time. Then nine months later, you are still there, so I need to work out and say, “What are we going to plan for the long term?”This signals the importance of tube exit planning and other strategies that clarify the expected duration of tube feeding and the uncertainties that might surround this (Lively, McAllister, & Doeltgen, 2019; Syrmis et al, 2019).…”
Section: Resultsmentioning
confidence: 99%
“…Two rounds of coding were conducted, each of which involved multiple iterations to identify and refine themes, and followed MacQueen, This signals the importance of tube exit planning and other strategies that clarify the expected duration of tube feeding and the uncertainties that might surround this (Lively, McAllister, & Doeltgen, 2019;Syrmis et al, 2019).…”
Background: Complex feeding difficulties requiring enteral (tube) feeding affect everyone around the child. Parents experience additional stress and are at risk of social isolation. This study investigated the strategies families develop and use to adjust and adapt to enteral feeding so they were not just surviving but thriving as a family. Methods: Twenty parents whose children had been or continued to be enterally fed were interviewed, four of them twice as their experience of enteral feeding progressed. Learning theory was used to conceptualize findings in terms of changing use of tools that mediated parents' response to feeding-related challenges. Results: Parents encountered dilemmas relating to enteral feeding: maintaining participation in everyday activities, managing responses to the use of tubes for feeding, and doing what feels right for their child. They used four kinds of mediating tools to overcome these: memory aids and readiness tools, metaphors and narratives, repurposed everyday objects and personalized routines and materialities. Conclusions: This novel account of tool used to resolve dilemmas provides an empirically and theoretically grounded basis for supporting parents to thrive despite the challenges of enteral feeding. Specifically, it can guide information given to help parents anticipate and cope with dilemmas arising from enteral feeding.
“…Across the included studies, we identified 3 distinct approaches to intervention with the ultimate aim of tube weaning: (1) those grounded in behavioral strategies, 7–12,20,21,28,34,35,40 (2) those with a biomedical or other treatment focus, 17,27,39,41 and (3) those that followed a child‐ and family‐centered approach 13–16,18,19,22,24–26,29,36,37,42,43 …”
Section: Resultsmentioning
confidence: 99%
“…For example, some programs report on change in number of bites swallowed/mouth cleans 7,8 . Others evaluate changes in preweaning and postweaning weight or body mass index (BMI) in isolation 9–17 or in the context of changes in the child's behavior and feeding capacity 5,18–22 . Success rates may also depend on the specific definition of what it means to be weaned (no tube use) or not weaned (continuing tube use in some capacity) 23–26 .…”
Section: Introductionmentioning
confidence: 99%
“…Success rates may also depend on the specific definition of what it means to be weaned (no tube use) or not weaned (continuing tube use in some capacity) 23–26 . Length of follow‐up varies between studies, with some reporting only immediate changes at the time of weaning 11,24,27 and others following progress over the subsequent months and year 13–16,20,22,23,26,28,29 …”
Approaches to tube weaning enterally fed children and evaluating outcomes vary widely. This limits the utility of research for identifying both “what works” and successful implementation of research outcomes. We used a qualitative scoping review methodology to examine internationally published research. Our primary aim was to identify the main philosophies underpinning intervention design and the main outcome variables used to demonstrate success of existing programs. This information can be used to inform future research design and clinical practice. Literature up until June 2019 was sourced via Medline, Scopus, Ovid, and CINHAL databases; hand searching; and gray literature using Google Advanced Search. Three predominant approaches to tube‐weaning interventions were identified: behavioral, child‐ and family‐centered, and biomedical. A wide range of intervention variables were identified, with the level of parental involvement and the use of hunger provocation varying between approaches. Our Review also confirms that there is no consistency in outcome measures used, limiting comparability between programs. We suggest that the role of parents in the weaning process and its impact on both the child and the parent/carer while transitioning from enteral to oral eating are insufficiently understood. We discuss these findings in the context of a suggested framework for future research.
Background
Infants and children, who temporarily use feeding tubes to maintain body composition and growth, often have difficulty resuming oral feeds once medically stable. We report survey results from Growing Independent Eaters (GIE), an interdisciplinary approach providing home‐based virtual support during a child‐led appetite‐guided enteral wean.
Method
Surveys addressing participant wean success, weight, and feeding practices were sent to 76 families who participated in a GIE‐led wean; 31 surveys were completed and returned.
Results
All participants who were not eating or drinking orally prewean were fully or partially weaned off enteral support. Infants weaned faster (37.7 days) than children (80.1 days). Mean weight loss during the intervention was 6.6% for infants and 5.9% for children. Six months postwean, 93% of participants surpassed their prewean weight.
Conclusion
The GIE method was successful for weaning infants and children off enteral support.
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