OBJECTIVE To determine the practical problems that families of children on home enteral tube feeds (HETF) experience in the first year post-hospital discharge. METHODS Thirty parents/carers of children (0-16 years) completed a multiple choice/short answer questionnaire by interview 12 months after discharge from hospital. Issues addressed included: home delivery of feed and equipment; pump usage; tube changes; and overnight feeding.
Results: The main problems identified were: sleep disturbance (75%); frequent tube dislodgement (46%); tube blockages (41%); inability of some home delivery companies (HDC) to provide all the paediatric special feeds required (43%); and pump inaccuracy (23%). Conclusions Children on long-term HETF and their families experience significant problems with sleep disturbance, tube dislodgement and tube blockage. In addition, accuracy of pumps and obtaining feed and equipment was a source of stress. Dietitians and community nurses urgently need to explore solutions to the common problems associated with overnight feeding. Furthermore, regular home reviews are necessary in long-term HETF to continue to identify and minimize problems.