Summary Feeding problems are often found in children with severe and profound learning disabilities. It is increasingly common for these children to receive a gastrostomy button so that they can maintain an adequate nutritional intake. The psychological implications of this operation for families and carers have received little attention, with most studies focusing on medical and nutritional outcomes. The present paper describes the qualitative findings of interviews carried out with professionals and parents as part of a pilot study. The themes which emerged included the need for early multidisciplinary support and information for parents, improved communication between professionals, and problems relating to funding. Suggestions for improved service delivery are proposed.

Children with developmental delays often suffer feeding difficulties. It has become common for those with a severe likelihood of malnutrition to be considered for alternative methods of nutritional intake, often a gastrostomy. As part of a pilot study investigating the effects of gastrostomy on the child and their family, we conducted a literature review in order to establish the current areas of research, progress and concern. This paper describes the method and findings of the literature review and concludes with a discussion of the topics raised. The main conclusion is that although the need for gastrostomy in this group of children has been shown to be effective in maintaining adequate weight gain and nutritional intake, the support given to the family prior to, and after the operation is inadequate. Greater emphasis needs to be placed on detailed family assessment as part of the early intervention package. Copyright © 2001 John Wiley & Sons, Ltd.

Children with developmental delays often suffer feeding dif®culties. It has become common for those with a severe likelihood of malnutrition to be considered for alternative methods of nutritional intake, often a gastrostomy. As part of a pilot study investigating the effects of gastrostomy on the child and their family, we conducted a literature review in order to establish the current areas of research, progress and concern. This paper describes the method and ®ndings of the literature review and concludes with a discussion of the topics raised. The main conclusion is that although the need for gastrostomy in this group of children has been shown to be effective in maintaining adequate weight gain and nutritional intake, the support given to the family prior to, and after the operation is inadequate. Greater emphasis needs to be placed on detailed family assessment as part of the early intervention package. Copyright IntroductionChildren with complex health needs are living longer than ever today as a result of medical and technological advances in healthcare. One of the most important requirements of maintaining a child's health involves ensuring adequate nutritional intake, which in turn facilitates weight gain, growth and development. In some cases children with physical impairments and a learning disability have dif®culty swallowing food, either because of poorly developed oral-motor skills, a result of neurological abnormality, or due to gastro-intestinal factors such as re¯ux or delayed gastric emptying.Once the child has been identi®ed as a problem feeder, usually the result of having an`unsafe swallow', it may be decided that a form of enteral feeding via a naso-gastric (NG) tube or gastrostomy is necessary for prevention of malnourishment. Over the past decade the amount of children receiving gastrostomy tubes has increased substantially. British Association of Parenteral and Enteral Nutrition (BAPEN) showed there was substantial growth between 1990 (425) and 1997 (1180) with the current ®gures likely to represent an increase of over 200 per cent in the past nine years (Elia, 1994(Elia, , 1997Mickelwright, 1996 The medical need for this form of arti®cial nutrition has been established, however other effects of gastrostomy on the child and family have only recently begun to receive attention. For example, staff at a respite care unit in Dorset were concerned about the reduction in carer-child interaction during mealtimes for those children being tube fed in comparison with children being fed orally. Recognising the need for further investigation we carried out a pilot study with the aim to review work already carried out in this ®eld and explore future research needs. It was decided that the pilot study would consist of three components: literature review, interviews and visits to other research centres. The pilot study ®ndings are published in a separate paper (Rouse and others, in press). This article aims to present a comprehensive review of the current literature available, and then to suggest dire...

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