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ABSTRACT
A review of 13 papers investigating parents' experience of long-term tube feeding in disabled children and young people identified a significant impact on parents and families related to oral feeding, decision making and tube feeding itself. Mixed messages and pressure from health professionals and relatives made decision making about tube feeding more difficult for parents. Making the decision to tube feed or proceed to gastrostomy was described in terms of 'giving in'. Parents expressed a need for consistent, accurate information. Once tube feeding was established there is a positive impact on the lives of the child and family - although some parents reported reduced support and continued feelings of inadequacy. The significance parents attach to oral feeding and their information and respite care needs when tube feeding must be recognised and further explored.
KEY WORDS
Children: nutrition
Enteral and parenteral feeding
Psychosocial care
Enteral tube feeding (the delivery of nutrients into the gastrointestinal tract by tube) is increasingly used to treat nutritional and growth problems in children with chronic illness or disability. Although clinical benefits from home enterai tube feeding in children have been reported (Patrick et al 1986, Heine et ol 1995), little is known about the psychosocial aspects of tube feeding. Experience suggests that making the decision to embark on tube feeding is difficult for parents, and there may be serious and unintended social and emotional consequences (Townsley and Robinson 1999, Holden and MacDonald 1997).
A review of 13 papers investigating parents' experience of long-term tube feeding in disabled children and young people is reported in this article. Three papers originated from the UK, four from the United States, five from Canada and one from Australia. Although this diversity may reflect differences in culture and care provision, at some level it could be argued that a mother's need to feed her child is universal. Three main themes emerged from the review and are discussed below: oral feeding, decision making and the aftermath.
Oral feeding
Feeding problems threaten a mother's identity as a 'good mother' (Thorne et al 1997b, Rouse et al 2002, Franklin and Rodger 2003) and may harm the parentchild relationship, with some mothers reporting an inability to bond with their baby (Franklin and Rodger 2003). From the...