Article Text

PDF
The impact of gastrostomy in motor neurone disease: challenges and benefits from a patient and carer perspective
  1. Theocharis Stavroulakis1,
  2. Wendy O Baird2,
  3. Susan K Baxter2,
  4. Theresa Walsh1,
  5. Pamela J Shaw1 and
  6. Christopher J McDermott1
  1. 1Academic Neurology Unit, Department of Neuroscience, Sheffield Institute for Translational Neuroscience (SITraN), The University of Sheffield, Sheffield, UK
  2. 2School of Health and Related Research (ScHARR), The University of Sheffield, Sheffield, UK
  1. Correspondence to Dr Christopher J McDermott, Sheffield Institute for Translational Neuroscience (SITraN), The University of Sheffield, 385A Glossop Road, Sheffield, S10 2HQ, UK; c.j.mcdermott{at}sheffield.ac.uk.

Abstract

Objectives This study explores the experience of gastrostomy insertion from the perspective of the patients and their informal carers. Gastrostomy feeding is commonly used to support motor neurone disease (MND) patients with dysphagia. However, there is lack of information describing patient and carer experiences following gastrostomy insertion. The effect of gastrostomy on quality of life for these patients and their family is currently not well understood.

Methods Retrospective qualitative exploration using semistructured interviews with patients and their informal carers to elicit in-depth descriptions of their experiences and views following gastrostomy.

Results 27 patients consented to the study; of these, 23 underwent a successful gastrostomy. 10 patients and 8 carers were interviewed, approximately 3 months following a successful gastrostomy. Participants described clinical complications, practical issues, time restrictions imposed by strict feeding regimens and psychological issues, which adversely impacted on quality of life. However, the establishment of a safe alternative route for feeding and medication, and the reduced worry over difficult meals and weight loss, were described by all as outweighing these negative impacts. Participants also described having received education/training on gastrostomy feeding both in hospital and in the community, which helped them to cope during the transition from oral to gastrostomy feeding.

Conclusions This study highlights the challenges and benefits of gastrostomy as well as the importance of education and information provision. Emphasis should be given to education before and after insertion along with support and care in the community. While the significant impact of gastrostomy on patients and carers should not be underestimated, the potential benefits were described as outweighing these concerns.

Statistics from Altmetric.com

  • Received 18 October 2013.
  • Revision received 14 April 2014.
  • Accepted 30 April 2014.
View Full Text

Request permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.