Background: The prevalence of percutaneous endoscopic gastrostomy (PEG) feeding of children in the UK has increased. This study explored how gastrostomy feeding affects the daily lives of children and their families, from the parents' perspectives and developed a conceptual framework for assessing the impact of feeding on family life.
Methods: A semi-structured interview approach was used to obtain the parents' views regarding the impact of feeding on daily lives; both of the children and their family. The study was a cross-sectional qualitative design employing purposive sampling. Twenty-four interviews were conducted and data were analysed descriptively and thematically.
Results: Difficulties arising from PEG feeding included vomiting (71%), diarrhoea (33%), infection of the PEG site (46%) and leakage (54%). The key issues that emerged included delayed and disturbed sleep, restricted ability to go out, difficulties finding a place to feed, child care problems, negative attitudes of others towards feeding and family divisions. Parents primarily raised key issues regarding the impact of PEG feeding on themselves or the family rather than on the child.
Conclusions: An assessment framework has been developed, based on the parents perceptions, for use in assessing the impact of feeding upon family life and identifying the support required for parents of children receiving PEG feeding. Provision of adequate support is likely to require a network of healthcare professionals, social care and support groups, all working together to meet identified needs.