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Planning for an uncertain future in progressive neurological disease: a qualitative study of patient and family decision-making with a focus on eating and drinking

Overview of attention for article published in BMC Neurology, August 2018
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About this Attention Score

  • In the top 25% of all research outputs scored by Altmetric
  • High Attention Score compared to outputs of the same age (84th percentile)

Mentioned by

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19 tweeters

Citations

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3 Dimensions

Readers on

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41 Mendeley
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Title
Planning for an uncertain future in progressive neurological disease: a qualitative study of patient and family decision-making with a focus on eating and drinking
Published in
BMC Neurology, August 2018
DOI 10.1186/s12883-018-1112-6
Pubmed ID
Authors

Gemma Clarke, Elizabeth Fistein, Anthony Holland, Jake Tobin, Sam Barclay, Stephen Barclay

Abstract

Dysphagia and other eating and drinking difficulties are common in progressive neurological diseases. Mealtimes can become a major source of difficulty and anxiety for patients and their families. Decisions about eating, drinking and care can become challenging as disease progresses, and the person in question loses the capacity to participate in decisions about their own care. We sought to investigate how patients and their family members make decisions about their future care as their condition deteriorates, with a particular focus on mealtimes, eating and drinking. Longitudinal qualitative in-depth interviews were undertaken with patients and their family members (N = 29) across a range of disease groups, including: dementia, Parkinson's Disease, Huntington's Disease, Progressive Supranuclear Palsy, Motor Neurone Disease, Multiple Sclerosis. Patients had varying degrees of eating and drinking difficulties, and levels of decision-making capacity. Interviews were 'participant led' and undertaken in the patients' own homes or a place of their choosing. Follow-up interviews were three months to one year later depending upon disease trajectory. Interviews were audio recorded and analysed in NVivo using a Thematic Analysis approach. Twenty-nine participants were interviewed between 2015 and 2017. Two key themes emerged from the analysis: 1) Health Literacy: the extent to which patients and relatives appeared to know about the condition and its treatment. Patients and their family members varied in their ability to speak and communicate about their condition and prognosis. 2) Planning style: the extent to which participants appeared to value involvement in advance care-planning. Patients and their family members varied in the way in which they made decisions: some preferred to 'take each day as it comes', while others wished to plan extensively for the future. Issues with eating and drinking are often overlooked. Clinicians need to understand both the patient's level of health literacy and their style of planning before communicating with patients and their families about these sensitive issues.

Twitter Demographics

The data shown below were collected from the profiles of 19 tweeters who shared this research output. Click here to find out more about how the information was compiled.

Mendeley readers

The data shown below were compiled from readership statistics for 41 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 41 100%

Demographic breakdown

Readers by professional status Count As %
Unspecified 8 20%
Student > Bachelor 8 20%
Student > Master 8 20%
Student > Ph. D. Student 6 15%
Other 4 10%
Other 7 17%
Readers by discipline Count As %
Unspecified 11 27%
Nursing and Health Professions 10 24%
Medicine and Dentistry 5 12%
Social Sciences 4 10%
Psychology 4 10%
Other 7 17%

Attention Score in Context

This research output has an Altmetric Attention Score of 13. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 06 April 2019.
All research outputs
#1,301,644
of 13,816,277 outputs
Outputs from BMC Neurology
#143
of 1,578 outputs
Outputs of similar age
#42,883
of 274,078 outputs
Outputs of similar age from BMC Neurology
#1
of 1 outputs
Altmetric has tracked 13,816,277 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 90th percentile: it's in the top 10% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 1,578 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 5.6. This one has done particularly well, scoring higher than 90% of its peers.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 274,078 tracked outputs that were published within six weeks on either side of this one in any source. This one has done well, scoring higher than 84% of its contemporaries.
We're also able to compare this research output to 1 others from the same source and published within six weeks on either side of this one. This one has scored higher than all of them