Author: Craig GM et al
Source: Developmental Medicine and Child Neurology 2003, Vol 45: 183-188.
In this study, 22 families of children with disabilities were interviewed to evaluate parent?s feelings about Gastrostomy Tube (G-Tube) feeding before their child had surgical tube placement. At the time the study, 4 families were still undecided about whether or not to place the G-tube; the rest of the children had already had the procedure ranging from a few months ago to a few years ago. Of the 22 children, 10 children had cerebral palsy, 10 had a chromosomal or genetic syndrome, and 2 did not yet have a confirmed diagnosis.
Parents were interviewed about feeding history, what factors led up to the child needing a gastrostomy feeding tube, what benefits they thought it might bring and suggestions for improving support in making the decision.
The findings revealed many common themes. Most parents reported that a major factor in the decision to place the tube stemmed from feeding problems such as prolonged feeding times (5-8 hours feeding a day), food ?battles? at the table, and difficulties with placing the nasogastric (NG) tube without the child pulling it out. There was also a common concern regarding the visibility of an NG tube and the social stigma effect it had. The thought that the G-tube would be hidden and would offer a more discreet way of feeding was seen as a positive aspect of having the surgery. Many hoped that it would only be used as a ?back-up? mode of feeding or to provide fluids, but not for all of their child?s nutrition needs.
Some of the common concerns of the parents interviewed were related to the psychosocial aspects of feeding. Many parents were worried their child would become dependent on the tube and lose the ability or desire to eat. Many said that although feeding by mouth could be challenging at times, it was still seen as a special family ?social? time and were worried they would lose that when a feeding tube was placed. For some, the G-tube suggested that something was ?very wrong? or that the child would ?never feed properly? and saw it as one more medical thing they would need to do on top of everything else.
Interestingly, the parents reported that the major factor that made it difficult to decide about having surgery was that the health-care provider didn?t offer sufficient convincing evidence that their child would have significant improvements in heath or weight gain. They often felt frustrated that their child?s growth and eating were compared against children who did not have disabilities, and only 50% of families reported seeing a dietitian before the G-tube was discussed. Parents of children who also needed a nissen fundoplication(an anti-reflux procedure) were more cautious about making this decision, as this was seen as much ?larger? surgery, especially if their child was not actively vomiting or was seen as having ?borderline? reflux. Many families reported that they wished they had had more information on how the tube would affect daily activities of life (e.g., swimming, chest PT, going on vacation, etc.) and parents of older children worried how it would affect their child?s body image. Lastly, many parents felt the decision to place the tube would have been easier if they had had the option of talking to other families who had already had the procedure about the positive and negative experiences they had once the tube was placed.
The authors suggest that more focus be placed on providing parents with training (both hands- on and visual-aids) about G-tube feeding , and that health care providers should coordinate their efforts to provide more specific information that may fall outside their ?realm of expertise.? (For example, a dietitian would be able to answer questions on how the actual medical procedure would be completed if asked, and a PT could discuss some of the specifics of the formulas used to feed). This would enable the clinicians to help the families make decisions when asked without missing any ?windows of opportunity.?
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