Discussing Gastrostomy Tube Complexities May Help Families

Diedtra Henderson

June 30, 2015

Letting families know about the far-reaching implications of gastrostomy tube placement on children's health and happiness, and discussing the family's values, experiences, and expectations, may help them make the difficult decision on behalf of their child, according to a systematic review.

Katherine E. Nelson, MD, from the Paediatric Advanced Care Team and the Division of Paediatric Medicine, Department of Paediatrics, Hospital for Sick Children, Toronto, Ontario, Canada, and the Institute for Health Policy, Management, and Evaluation, and coauthors published the results of their systematic review online June 29 in Pediatrics.

Gastrostomy tubes are frequently placed in children with neurologic impairment to ferry nutrition directly to their stomachs. According to Dr Nelson and colleagues, families often feel the information they receive about the procedure is inadequate, which studies suggest can heighten decisional conflict. The authors screened 2674 abstracts they found in six electronic databases and included in their review 13 studies from 1995 to 2011 that explored the experiences of children with neurologic impairment who had gastrostomy tubes.

Three major outcomes, each with benefits and challenges, emerged from the studies: changes in the child's physical health, caregiving, and logistics. Parents, however, varied in how they viewed the same change; for instance, seeing weight gain as both a positive and a negative outcome. Other physical outcomes included improved breathing and alertness, as well as gastrointestinal and respiratory complications. Parents also described improved quality of life for their healthier and happier children. That positive was offset by cessation of eating food by mouth, with some parents sneaking "tastes" of food to their children.

For some parents, the gastrostomy tubes lessened the burden of caregiving, whereas others said care needs intensified, disrupting parents' sleep and raising the new question of whether gastrostomy tubes prolonged their child's "poor quality" life. The mechanical nature of feeding troubled many parents, with some labeling gastrostomy tubes as unnatural, a "necessary evil," or "horrific," whereas others shifted focus to other things they could do to help their child experience some degree of comfort.

"The experiences of families with [gastrostomy tube] feedings for children with neurologic impairment are complex, affecting the child, parent, and family unit from physical, emotional, and relational perspectives," Dr Nelson and colleagues write. "Parents noted significant benefits to children's weight and happiness, caregiver's quality of life, and the family's flexibility. However, there are challenges as well: complications for the child, increased care needs, new stresses for the parents, and family burdens from increased utilization of health services."

The authors say healthcare providers need to describe the array of patient-centered outcomes, not just physical health outcomes, to help families take part in the decision-making and suggest creating formal decision aids.

"This systematic review of 13 qualitative studies provides an overview of family experiences and can serve as the starting point for conversations with families regarding [gastrostomy tube] placement in children with neurologic impairment," the authors conclude.

Financial support for the study was provided by a Janis Rotman Fellowship in Home Care Innovation, Hospital for Sick Children. Three authors also disclosed receiving financial support through the Hospital for Sick Children and the Canadian Institutes of Health. The other authors have disclosed no relevant financial relationships.

Pediatrics. Published online June 29, 2015. Abstract

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