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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
Clarke G, Fistein E, Holland A, Tobin J, Barclay S, Barclay S.. BMC neurology, 2018-08-16
Topic: Risk, prevention and care in population studies
Background 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. Methods 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. Results 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. Conclusions 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.
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
APA 7th
Clarke, G., Fistein, E., Holland, A., Tobin, J., & Barclay, S. (2018). 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. BMC neurology. https://doi.org/10.1186/s12883-018-1112-6
Vancouver
Clarke G, Fistein E, Holland A, Tobin J, Barclay S. 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. BMC neurology. 2018. doi:10.1186/s12883-018-1112-6. PMID: 30115018.
BibTeX
@article{clarke2018-30115018,
author = {Clarke, G. and Fistein, E. and Holland, A. and Tobin, J. and Barclay, S.},
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}},
journal = {BMC neurology},
year = {2018},
doi = {10.1186/s12883-018-1112-6},
pmid = {30115018},
url = {https://doi.org/10.1186/s12883-018-1112-6}
}
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Key findings
- Results Twenty-nine participants were interviewed between 2015 and 2017.
Study details
- Study designlongitudinal study
- Participants29
- Evidence strengthModerate
How this study scored 64/100
Published in a peer-reviewed journal, and it is a longitudinal study following the same people over time. Scored zero for effect reported and randomised / blinded because the record does not state it. We have no data on journal's citation record, times cited, citations per year, impact for its field and year, cited by studies here, still being cited, senior author's track record, institution's track record and multi-centre collaboration, so those were left out: it earned 37 of the 58 points we could judge it on, which is 64 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (BMC neurology) |
| Journal's citation record | — / 4 | No journal record from OpenAlex — left out of this score |
| Study design | 7 / 12 | A longitudinal study following the same people over time |
| Strength of evidence | 3 / 5 | Rated “moderate” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 2 / 5 | 2018 — within 10 year(s) of the newest study here |
| Sample size | 1 / 4 | 29 participants |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 3 / 3 | Studied in people (participant count stated) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | — / 7 | No citation count (not found in OpenAlex) — left out of this score |
| Citations per year | — / 5 | No citation count or no year — left out of this score |
| Impact for its field and year | — / 6 | No field-weighted citation impact (OpenAlex has none yet) — left out of this score |
| Cited by studies here | — / 6 | Not yet checked against this library's citation graph — left out of this score |
| Still being cited | — / 4 | No yearly citation counts — left out of this score |
| Senior author's track record | — / 4 | Senior author's record not available — left out of this score |
| Institution's track record | — / 3 | No institution listed in OpenAlex — left out of this score |
| Multi-centre collaboration | — / 3 | Institutions not listed — left out of this score |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 30115018) |
| Free to read | 2 / 2 | Free to read |
| Points | 37 / 58 | Scored on 11 of 20 parts. We have no data for the rest, so they are left out: 37 of the 58 points we could judge it on is 64 out of 100. |
| Total | 64 / 100 | — |
What each of these 20 components measures, and what this score is not →
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