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.

BACKGROUND AND OBJECTIVES: Children with neurologic impairment (NI) often undergo feeding tube placement for undernutrition or aspiration. We evaluated survival and acute health care use after tube placement in this population. METHODS: This is a population-based exposure-crossover study for which we use linked administrative data from Ontario, Canada. We identified children aged 13 months to 17 years with a diagnosis of NI undergoing primary gastrostomy or gastrojejunostomy tube placement between 1993 and 2015. We determined survival time from procedure until date of death or last clinical encounter and calculated mean weekly rates of unplanned hospital days overall and for reflux-related diagnoses, emergency department visits, and outpatient visits. Rate ratios were estimated from negative binomial generalized estimating equation models adjusting for time and age. RESULTS: Two-year survival after feeding tube placement was 87.4% (95% confidence interval [CI]: 85.2%–89.4%) and 5-year survival was 75.8% (95% CI: 72.8%–78.4%). The adjusted rate ratio comparing weekly rates of unplanned hospital days during the 2 years after versus before tube placement was 0.92 (95% CI: 0.57–1.48). Similarly, rates of reflux-related hospital days, emergency department visits, and outpatient visits were unchanged. Unplanned hospital days were stable within subgroups, although rates across subgroups varied. CONCLUSIONS: Mortality is high among children with NI after feeding tube placement. However, the stability of health care use before and after the procedure suggests that the high mortality may reflect underlying fragility rather than increased risk from nonoral feeding. Further research to inform risk stratification and prognostic accuracy is needed.

Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery.

Les enfants ayant une atteinte neurologique ne sont pas tous en mesure de s’alimenter de manière sécuritaire et suffisante par voie orale pour maintenir un état nutritionnel convenable. L’alimentation par sonde de gastrostomie (ASGS) est une intervention importante et souvent essentielle dans une telle situation. Cependant, bien des parents et des familles ont du mal à prendre la décision de passer à ce type d’alimentation. Le présent point de pratique aborde les raisons courantes qui expliquent ces conflits décisionnels chez les parents et traite des principaux aspects d’une vie sous ASGS. On y présente également un cadre de prise de décision partagée et l’approche de la Classification internationale du fonctionnement, du handicap et de la santé (CIF). On termine par des recommandations pratiques aux cliniciens afin de faire participer les familles au processus décisionnel menant à cette intervention qui change la vie.