A grounded theory study of the perceptions and meanings associated with gastrostomies among parents of children with palliative needs

Abstract

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Background: There is few literature on the difficulties and different meanings of gastrostomy tubes (GST) for parents of children with palliative needs, and what specific palliative care teams contribute to this process. Aim: To explore the process of information in the decision of performing a gastrostomy and the meanings that parents of children with palliative needs build around them. Design: Semi-structured interviews which were transcribed and analysed using Grounded Theory. Setting/participants: Parents and caretakers of children admitted in Paediatric Palliative Care Unit of Madrid Autonomous Community (Spain) whose children bore a gastrostomy device. Results: Two core categories arise (‘Fight’ and ‘The child as a life-meaning generator’). In all the cases, the child supplied the meaning to go on, and the Palliative Care Unit (CPU) helped in the daily care of the child and solving problems derived from the handling of the GT. Conclusions: It is necessary to improve the process of giving bad news and to introduce models of health care that focus on parents and child as the center of palliative care. It is also necessary to develop educational programs that enable continuity of care at home for children with palliative needs.