Decision-Making Around Gastrostomy-Feeding in Children With Neurologic Disabilities

Mahant, Sanjay; Jovcevska, Vesna; Cohen, Eyal

doi:10.1542/peds.2010-3007

Cited by 76 publications

(92 citation statements)

References 31 publications

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“…1 G-tubes allow nutrition to be provided directly into the stomach and are typically placed to mitigate nutritional or respiratory complications of swallowing dysfunction. [2][3][4] Given the symbolic significance of feeding as a parental duty 5 and the impact of this intervention on the child's daily life, 6 decisions regarding the placement of a G-tube are often complex. Many clinical practice guidelines recommend G-tube feeding largely based on evidence demonstrating its effectiveness on nutritional outcomes 2,3,7 without a comprehensive understanding of the patient-centered outcomes that are critical for family decisionmaking.…”

Section: What's Known On This Subjectmentioning

confidence: 99%

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Family Experiences With Feeding Tubes in Neurologic Impairment: A Systematic Review

et al. 2015

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BACKGROUND AND OBJECTIVE: Gastrostomy tubes (G-tubes) are frequently used to provide enteral nutrition for children who have neurologic impairment. Understanding the impact of G-tubes from the family’s perspective will inform decision-making and improve support from health care providers. This study explored the experiences of families after G-tube placement in children with neurologic impairment. METHODS: We conducted a systematic review of English-language qualitative primary research studies describing family experiences after G-tube placement. Six electronic databases were searched from inception to June 2014. Two authors independently screened and identified relevant studies, evaluated quality of reporting by using the Consolidated Criteria for Reporting Qualitative Research tool, and extracted data. Overarching concepts were developed by using thematic analysis. RESULTS: From 2674 screened abstracts, 84 texts were reviewed, and 13 studies met the inclusion criteria. G-tubes affect the lives of children, parents, and the family unit in many ways, both positive and negative. Improvements and challenges were described for children’s health and happiness, for parental caregiving and stress, and for logistics and bonding within the family. G-tube feeding also changed relationships within the family, between the family and the medical system, and between the family and the outside world. Furthermore, experiences varied, with different families framing similar concepts as positive and negative. CONCLUSIONS: G-tube placement has diverse effects on daily life for children with neurologic impairment and their families. Clinicians may use the themes identified in this study to guide conversations with families about their values, experiences, and expectations before and after G-tube placement.

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Section: What's Known On This Subjectmentioning

confidence: 99%

“…5 Research about shared decision-making has found that adequacy of information is a potentially modifiable component that can decrease decisional conflict among patients and families. 8 Furthermore, the same themes can be revisited after the procedure to enhance family support.…”

Section: What's Known On This Subjectmentioning

confidence: 99%

Family Experiences With Feeding Tubes in Neurologic Impairment: A Systematic Review

et al. 2015

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“…21 The decision to commence tube feeding is complex for families and carers of children with CP and may be filled with decisional conflict. 22,23 The values and meanings of feeding and eating are much more complex than simply providing adequate nutrition and maintaining weight gain. 23 A balanced and sensitive approach to informing parents and carers regarding the risks and benefits of enteral tube feeding and exploration into how tube feeding will fit into the context of everyday life is essential to assist in the decision-making process.…”

Section: Nutrition Supportmentioning

confidence: 99%

“…22,23 The values and meanings of feeding and eating are much more complex than simply providing adequate nutrition and maintaining weight gain. 23 A balanced and sensitive approach to informing parents and carers regarding the risks and benefits of enteral tube feeding and exploration into how tube feeding will fit into the context of everyday life is essential to assist in the decision-making process. 22 The choice of access for enteral tube feeding will depend upon the anticipated duration of feeding and the clinical status of the child.…”

Section: Nutrition Supportmentioning

confidence: 99%

Nutritional management of children with cerebral palsy

Bell

Samson‐Fang

2013

Eur J Clin Nutr

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Children with severe cerebral palsy and particularly those with oropharyngeal dysfunction are at risk of poor nutritional status. Determining the need and the mode of nutritional intervention is multifactorial and requires multiple methodologies. First-line treatment typically involves oral nutritional support for those children who are safe to consume an oral diet. Enteral tube feeding may need to be considered in children with undernutrition where poor weight gain continues despite oral nutritional support, or in those with oropharyngeal dysphagia and an unsafe swallow. Estimates for energy and protein requirements provide a starting point only, and ongoing assessment and monitoring is essential to ensure nutritional needs are being met, that complications are adequately managed and to avoid over or under feeding.

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“…This research emphasizes the importance of understanding the symbolic meanings of GFTs in relation to maternal identity, the maternal role, food, feeding, eating and child development. [17][18][19][20][21][22] FEEDING AND THE MOTHERING ROLE The suggestion of a GFT may challenge the 'good mother narrative' and signify maternal failure. Mothers may blame themselves for the child's inability to feed and poor growth or feel blamed by members of the extended family.…”

Section: Introductionmentioning

confidence: 99%

Psychosocial aspects of feeding children with neurodisability

Craig

2013

Eur J Clin Nutr

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The psychosocial support needs of parents considering a gastrostomy feeding tube for their disabled child are often overlooked, yet there is a growing body of evidence that attests to the decisional conflicts parents, often mothers, experience. This may be in addition to the stress associated with feeding a disabled child. The support needs of families and caregivers should be assessed, including the values parents attach to oral and tube feeding. Structured support should be embedded within the care pathway and both professionals, and service users, with appropriate training should be identified to ensure parental information needs, and any emotional, practical and financial issues are addressed.

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Decision-Making Around Gastrostomy-Feeding in Children With Neurologic Disabilities

Cited by 76 publications

References 31 publications

Family Experiences With Feeding Tubes in Neurologic Impairment: A Systematic Review

Family Experiences With Feeding Tubes in Neurologic Impairment: A Systematic Review

Nutritional management of children with cerebral palsy

Psychosocial aspects of feeding children with neurodisability

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