The impact of gastrostomy in motor neurone disease: challenges and benefits from a patient and carer perspective.
OBJECTIVE
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.
Academic Neurology Unit, Department of Neuroscience, Sheffield Institute for Translational Neuroscience (SITraN), The University of Sheffield, Sheffield, UK.
Theocharis
T
Stavroulakis
School of Health and Related Research (ScHARR), The University of Sheffield, Sheffield, UK.
Wendy O
WO
Baird
School of Health and Related Research (ScHARR), The University of Sheffield, Sheffield, UK.
Susan K
SK
Baxter
Academic Neurology Unit, Department of Neuroscience, Sheffield Institute for Translational Neuroscience (SITraN), The University of Sheffield, Sheffield, UK.
Theresa
T
Walsh
Academic Neurology Unit, Department of Neuroscience, Sheffield Institute for Translational Neuroscience (SITraN), The University of Sheffield, Sheffield, UK.
Pamela J
PJ
Shaw
Academic Neurology Unit, Department of Neuroscience, Sheffield Institute for Translational Neuroscience (SITraN), The University of Sheffield, Sheffield, UK.
Christopher J
CJ
McDermott
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003680:Deglutition Disorders / Q000209:etiology / Q000601:surgery; D005069:Evaluation Studies as Topic; D005260:Female; D005774:Gastrostomy / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000150:complications / Q000523:psychology* / Q000601:surgery; D012189:Retrospective Studies; D016896:Treatment Outcome
Gastrostomy; MND/ALS; Neurological conditions; Quality of life