Development of a web-based assessment tool that evaluates the meal situation when a child has a percutaneous endoscopic gastrostomy

BACKGROUND: Children with cancer often suffer side effects from their treatment, for example nausea and vomiting, which can lead to malnutrition. If a child cannot eat orally, a percutaneous endoscopic gastrostomy (PEG) can improve his or her well-being, psychosocial development and growth by enabling the supply of nourishment and facilitating the administration of necessary medicines. Few data exist on children’s comfort when using a PEG. The aim of this study was firstly to develop three versions of a web-based assessment tool in which children, families, and healthcare professionals would be able to register their observations and assessments for evaluating the meal situation when a child has a PEG and secondly to validate the content of the tool. METHODS: A qualitative design was chosen with purposive sampling of participants. Five children with cancer, five parents, five registered nurses and five paediatricians participated first in an interview and then in a member check of the web-based tool. The data were analysed with manifest qualitative content analysis. RESULTS: The results highlighted four categories of issues which needed to be revised in the web-based tool: words which were difficult for the participants to understand, items which contained several questions, items which needed to be split into more items to be answerable and the layout of the questionnaire. The web-based tool was revised according to the categories, and then a member check evaluated and finally confirmed the revisions. CONCLUSIONS: A web-based tool may be able to evaluate the meal situation when a child with cancer has a PEG. The tool may be able to detect early failures of the PEG, facilitating early action from the healthcare professionals in supporting the child and his or her parents in their care of the PEG. In the long run, this web-based tool may also be able to increase the quality of care of children living with a PEG. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12887-019-1447-1) contains supplementary material, which is available to authorized users.