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 co mmunity who require enteral tube feeds to optimize their nutritional status . Whilst there appears to be evidence of health gains, for some children th ere may also be serious and unintended social deprivations resulting from t he need to be tube fed. This paper reviews the literature on support for ch ildren 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 posit ion of all non-parent carers and staff who are willing to administer entera l tube feeds. Such guidance should also ensure that enterally-fed children have the same rights to educational and social services as other children a nd that families are given the opportunity to make informed decisions about the implications of enteral feeding prior to it being established.