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

Abstract

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.

Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life

“…The literature has shown variability in parent’s experiences for those with a child with a disability after the child’s gastrostomy placement, although enhancement in nutritional status has been reported [30–33]. Parents have reported less burden of care at mealtimes, reduced stress that their child is inadequately nourished, and relief that medications are consistently delivered, consequently improving their emotional wellbeing [30–34]. In a previous study with primary caregivers of a child with Rett syndrome we found that there was general satisfaction with outcomes following gastrostomy insertion [30].…”

Core outcome set for children with neurological impairment and tube feeding

“…[1][2][3][4] This may result in negative feeding experiences for the child and their family, increased risk of choking, vomiting, aspiration pneumonia, 1 growth failure, 5 and higher healthcare cost. These children often have feeding difficulties related to oro-motor dysfunction.…”

“…These children often have feeding difficulties related to oro-motor dysfunction. [1][2][3] Though gastrostomy and gastrojejunostomy tubes have been shown to improve nutritional outcomes in this population, there is uncertainty regarding their impact on survival, respiratory health, healthcare utilization and cost, feeding times, caregiving burden, and child and primary caregiver quality of life. 6 Gastrostomy and gastrojejunostomy tubes are placed to address these challenges.…”

Morbimortalidad asociada al estado nutricional y vía de alimentación en niños con parálisis cerebral

“…Taken in a timely manner, the insertion of a GT improves nutritional status and fat mass, decreases respiratory infections and hospitalizations in patients with CP 35,36 . However, patient heterogeneity and measurements, coupled with inadequate design studies make it difficult to demonstrate its benefits [37][38][39] . Moreover, it has been shown that survival at age 19 is greater in those without WG (72% versus 55%) 27 , but this study suggests that the association between WG use and morbidity and mortality should be investigated prospectively , Considering the patient's condition at the time of the WG, in order to evaluate if the greatest risk is real or if it is only about patients with greater fragility and vital risk 5 .…”