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

The experiences and support needs of people living at home with an enteral tube: a qualitative interview study
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.
0952-3871
Green, Susan
1075a760-2a75-443c-96c7-194d0d90ede8
Townsend, Kay
65d8a2d8-87e0-4b8b-b1e5-d42d671424d4
Jarrett, Nikki
acfc2414-c001-4fde-950d-b767fc7fa83d
Fader, Mandy
c318f942-2ddb-462a-9183-8b678faf7277
Green, Susan
1075a760-2a75-443c-96c7-194d0d90ede8
Townsend, Kay
65d8a2d8-87e0-4b8b-b1e5-d42d671424d4
Jarrett, Nikki
acfc2414-c001-4fde-950d-b767fc7fa83d
Fader, Mandy
c318f942-2ddb-462a-9183-8b678faf7277

Green, Susan, Townsend, Kay, Jarrett, Nikki and Fader, Mandy (2019) The experiences and support needs of people living at home with an enteral tube: a qualitative interview study. Journal of Human Nutrition and Dietetics. (doi:10.1111/jhn.12656).

Record type: Article

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.

Text
The experiences and support needs of people living at home with an ET accepted version Mar19 checked with NIHR and PINNT - Accepted Manuscript
Restricted to Repository staff only until 21 April 2020.
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Text
The experiences and support needs of people living at home with an enteral tube - Version of Record
Restricted to Repository staff only
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More information

Accepted/In Press date: 18 March 2019
e-pub ahead of print date: 21 April 2019

Identifiers

Local EPrints ID: 429973
URI: https://eprints.soton.ac.uk/id/eprint/429973
ISSN: 0952-3871
PURE UUID: 6e033a7d-ce32-48c5-8d7f-a775e78c3765
ORCID for Susan Green: ORCID iD orcid.org/0000-0003-1760-3679
ORCID for Kay Townsend: ORCID iD orcid.org/0000-0002-2252-6447

Catalogue record

Date deposited: 09 Apr 2019 16:30
Last modified: 20 Jul 2019 01:08

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