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

Abstract

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.

People with enteral tubes and their carers' views of living with a tube and managing associated problems: A qualitative interview study

“…Living with an ET at home has a considerable impact on daily life, as reported in the primary publication of this study Green, Townsend, Jarrett, Fader (). This secondary publication reveals the significant time and resource (both physical and emotional) required by people with ETs and their carers to manage the tube, associated therapies and problems as they arise.…”

“…The five themes and associated subthemes derived from analysis of the transcripts are described by Green, Townsend, Jarrett and Fader () Living with the tube Home better than hospital Feelings about the tube Help when you need it Cost for NHS …”

“…A qualitative descriptive design using one to one, in‐depth interviews with people with ETs and their carers was used. The methods employed are described fully previously (Green et al ).…”

“…People who are discharged home from hospital following placement of an ET, and their carers, are required to learn to manage their ET, associated therapy and deal with issues as they arise (Boullata et al, ; NICE, ). Training received can be limited and support following discharge is variable (Green, Townsend, Jarrett and Fader ).…”

“…The findings presented in this paper are gained from a qualitative study which aimed to explore the experiences of people with ETs and their carers concerning hospital admission for ET‐related issues and their views of services that could support management of ETs at home. The primary publication addressing the primary research aim is reported in (Green et al ). The study did not aim to explore the full experience of living with a tube but the qualitative approach and the broad interview guide gave participants the flexibility to introduce issues they felt relevant and important.…”