Medical and Psychosocial Experiences of Family Caregivers With Children Fed Enterally at Home

Enrione, Evelyn B.; Thomlison, Barbara; Rubin, Aviva

doi:10.1177/0148607105029006413

Cited by 21 publications

(16 citation statements)

References 50 publications

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“…20 Similarly, studies have acknowledged the balance between positive and negative outcomes related to G-tube feeding 21 and the presence of both medical and psychosocial challenges. 22,23 The study's thematic framework, particularly the child-focused aspect, is similar to the World Health Organization's International Classification of Functioning, Health and Disability. 24 The child's physical themes correspond to "body functions and structures," child quality of life and socialization to "activity" and "participation," and parent/family themes to "contextual factors.…”

Section: Figurementioning

confidence: 99%

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: Figurementioning

confidence: 99%

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

et al. 2015

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“…Several negative effects have been reported following the placement of nasogastric/gastrostomy tubes. These include elevated parental stress, emotional and economic costs, and adverse effects on maternal identity . Furthermore, the act of placing the tube removes the child’s endogenous motivational factors to consume food, is not as effective at eliminating appetite regulation cues compared with oral eating, and instantly ascribes the child with a diagnosable psychological disorder under the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders ( DSM‐5 ) …”

mentioning

confidence: 99%

Definitions and Clinical Guidance on the Enteral Dependence Component of the Avoidant/Restrictive Food Intake Disorder Diagnostic Criteria in Children

Dovey

Wilken

Martin

et al. 2017

J Parenter Enteral Nutr

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The aim of the current article is to offer definitive guidance on weaning children who are reliant on nasogastric/gastrostomy feeding tubes. To date, no internationally recognized definitions or principles for interventions exist, and clinics have been reliant on creating their own unique intervention criteria. To achieve the aim, 2 goals are set out within the current article. The first goal was to definitively define the process of tube weaning. To achieve this, both tube dependency and oral eating also required definitions. It is necessary for these 2 additional definitions to fully understand the process of tube weaning and the transition that the child is making within these clinical interventions. The second goal of this article was to propose a set of minimum measurement criteria within a tube weaning protocol so that different clinical practices and perspectives may be measured accurately. This would then allow outcomes from different clinical services to be compared for efficacy. The culmination of this article is a set of 5 core principles that should govern clinics that adhere to the auspices of evidence‐based practice. These principles, if adopted, will provide the basis of a set of internationally recognized criteria within this field of pediatric gastroenterology.

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“…Typically, formula is administered by bolus feeding, continuous, or cyclic infusion. Bolus feeding is less restrictive and may not limit daily activities as significantly as continuous feeding (Enrione, Thomlison, & Rubin, 2005).…”

Section: Feeding Managementmentioning

confidence: 99%

“…There will be changes in family routines and potential restriction of activity and leisure time related to the enteral feedings. For some families, the psychosocial issues are more difficult than the associated medical problems with enteral feedings (Enrione et al, 2005). Inpatient programs such as Family-Centered Service and Creating Opportunities for Parent Empowerment can be utilized and continued after discharge (Craig et al, 2003).…”

Section: Impaired Physical Mobilitymentioning

confidence: 99%

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Management of the Child With Polymicrogyria

Turkelson

Martin

2009

Journal of Neuroscience Nursing

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Polymicrogyria is one of several neuronal migrational defects. This disorder is derived from a malformation in cortical development characterized by many small gyri, shallow sulci, and abnormal cortical layering. The potential causes of polymicrogyria include genetic disorders, intrauterine cytomegalovirus infection, and fetal vascular supply disruption. A wide variation in the extent of findings exists, ranging from minor deficits to profound neurological dysfunction. Seizures, feeding problems, elimination, physical mobility, and psychosocial issues must be managed for children with polymicrogyria. Children with this disorder require collaborative care from healthcare practitioners and parents to achieve their highest level of health. The incidence of neuronal migrational defects is approximately 1 in 2,500 live births (L. Villard et al., 2002). The diagnosis of these disorders has increased with improvement of magnetic resonance imaging (MRI) technology (A.

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Medical and Psychosocial Experiences of Family Caregivers With Children Fed Enterally at Home

Cited by 21 publications

References 50 publications

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

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

Definitions and Clinical Guidance on the Enteral Dependence Component of the Avoidant/Restrictive Food Intake Disorder Diagnostic Criteria in Children

Management of the Child With Polymicrogyria

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