The experiences and support needs of people living at home with an enteral tube: a qualitative interview study

Background: The number of people with an enteral tube (ET) living at home is increasing globally and services to support them to manage this complex and life-changing intervention vary across regions. The present study aimed to gain an understanding of the experiences of people living at home with an ET and their carers, as well as to explore their views of supporting services and ET-related hospital admissions.

Methods: A qualitative inductive descriptive design was employed. Semi-structured, face-to-face interviews with a purposive sample of people with an ET living at home and carers were undertaken. Interviews were transcribed, initial codes were assigned for salient constructs, and these were then grouped and developed into themes and sub-themes.

Results: Nineteen people with ETs and 15 carers of people with ETs were interviewed. Five themes were generated: home better than hospital, feelings about the tube, living with the tube, help when you need it and cost for health service. Participants indicated the ET significantly influenced daily life. Participants described becoming used to coping with the ET at home over time and developing strategies to manage problems, avoid hospital admission and reduce resource waste. Variation in supporting services was described.

Conclusions: People with ETs and their carers need considerable support from knowledgeable, responsive healthcare practitioners during the weeks following initial placement of the ET. Twenty-four hour services to support people with ETs should be designed in partnership with the aim of reducing burden, negative experience, waste and hospital admissions. National frameworks for home enteral nutrition could set the standard for support for people with ETs.