More than just a health issue: a review of current issues in the care of enterally-fed children living in the community

There are increasing numbers of children with a disability living in the community who require enteral tube feeds to optimize their nutritional status. Whilst there appears to be evidence of health gains, for some children there may also be serious and unintended social deprivations resulting from the need to be tube fed. This paper reviews the literature on support for children who are tube fed and makes a case for more coordinated and effective support services for families who are tube feeding a child at home. It is argued that national guidance should be developed which clarifies the position of all non-parent carers and staff who are willing to administer enteral tube feeds. Such guidance should also ensure that enterally-fed children have the same rights to educational and social services as other children and that families are given the opportunity to make informed decisions about the implications of enteral feeding prior to it being established.