“…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).…”
Section: Methodsmentioning
confidence: 99%
“…A lack of information on how enteral feeding fits into everyday life is a concern (Craig, Scambler, & Spitz, 2003;Liley & Manthorpe, 2003;Syrmis, Frederiksen, & Reilly, 2019). Reported difficulties include restricted ability to go out and maintain family activities, childcare problems, missing 'special time' with the child, and impinged parent-child interactions during mealtimes (Brotherton, Abbott, & Aggett, 2007;Sleigh, 2005;Veness & Reilly, 2008).…”
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).…”
Section: Methodsmentioning
confidence: 99%
“…A lack of information on how enteral feeding fits into everyday life is a concern (Craig, Scambler, & Spitz, 2003;Liley & Manthorpe, 2003;Syrmis, Frederiksen, & Reilly, 2019). Reported difficulties include restricted ability to go out and maintain family activities, childcare problems, missing 'special time' with the child, and impinged parent-child interactions during mealtimes (Brotherton, Abbott, & Aggett, 2007;Sleigh, 2005;Veness & Reilly, 2008).…”
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.
“…Interestingly, the most frequently reported risk of temporary tube feeding identified by participants was oral aversion (or the reluctance, avoidance, or fear of eating, drinking or accepting sensation in or around the mouth) 1,6,9,17,18 . Recent studies have shown that oral aversion is rarely included in parent guides on tube feeding, 19 nor is it consistently included as a possible complication in existing health guidelines on temporary tube feeding management 20 . This suggests that health‐care providers are aware of oral aversion as a barrier to tube weaning but are not communicating this well to families or consistently managing oral aversion, which is a contributing factor to the development of TFD 1,6,9,18 …”
Aim
To explore the understanding of and practices of health‐care workers in weaning children from feeding tubes.
Methods
An electronic survey of doctors, nurses, and allied health professionals at Children's Health Queensland obtained demographic information and awareness of various areas of tube feeding management particularly tube weaning.
Results
The 155 health‐care providers formed three well‐matched groups in terms of number and years of experience. Only 18 had formal training in tube weaning. Participants had high levels of knowledge regarding reasons for commencing and possible complications associated with tube feeding. However, health‐care providers generally were found to have limited to no knowledge of tube weaning practices. Nearly half of participants (46%) did not know the best time to plan for a tube wean and only 16 indicated that they or their work units documented tube exit plans, regardless of type of feeding tube, in children's medical charts. Time frames were rarely included as part of tube exit plans. Participants ranked medical stability and presence of a safe swallow most highly as important indicators for successful tube weaning. Multidisciplinary management was also identified as valuable. Tube weaning was predominately managed by children's primary health unit/service and largely involved a medical officer and dietician.
Conclusions
Poor awareness of tube weaning practices such as tube exit strategies may be impacting on the quality of care received by children who are tube fed. Future research should be directed towards developing and evaluating guidelines accompanied by educational resources to further advance tube weaning practices.
“…A backpack can be worn by the child to carry this continuous feed if appropriate. According to Syrmis et al (2019), an individual may have a gastrostomy due to dysphagia, which is an unsafe swallow. This can lead to pulmonary aspiration where fluid and food is inhaled into the windpipe and lungs, leading to coughing, breathing difficulties, and choking.…”
This article explores how gastrostomy feeding tubes can impact the early childhood education and care (ECEC) experiences of children. It presents findings from a small‐scale study, which utilised the perspectives of early years educators and parents. The findings indicate that feeding tubes have both an opportunistic and restrictive impact within ECEC. Opportunity was evident through improved nutrition and health, which allowed familial respite and an increased attendance of ECEC. This enabled opportunities for social and explorative interactions. However, the complexities of having and supporting a feeding tube made accessing types of play and exploration challenging. Collaboration between the educators and parents was a crucial tool for success. Educators felt with experience and teamwork they could ensure the needs of children were met innovatively and safely. However, it was concluded clearer advice for attending ECEC settings with a feeding tube would benefit all involved and instil a sense of readiness.
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