Evidence map›Paper›PMID 36776984›Full record

ArticleParkinson's disease2023

The Lived Experience of Caregiving and Perception of Service Provision among Family-Caregivers of People with Late-Stage Parkinson's: A Qualitative Study.

Joy Read, Sarah Cable, Gergely Bartl, Charlotte Löfqvist, Susanne Iwarsson, Anette Schrag

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Parkinson's disease, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
9citing papers in PubMed, 3 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

9 citing papers in PubMed, 3 syntheses or guidelines pooled it.

  1. Pooled it
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Joy ReadDepartment of Clinical and Movement Neurosciences, UCL Institute of Neurology University College, London, UK.ORCID https://orcid.org/0000-0002-3028-3975
Sarah CableDepartment of Clinical and Movement Neurosciences, UCL Institute of Neurology University College, London, UK.
Gergely BartlDepartment of Clinical and Movement Neurosciences, UCL Institute of Neurology University College, London, UK.
Charlotte LöfqvistDepartment of Health Sciences, Lund University, Lund, Sweden.
Susanne IwarssonDepartment of Health Sciences, Lund University, Lund, Sweden.
Anette SchragDepartment of Clinical and Movement Neurosciences, UCL Institute of Neurology University College, London, UK.ORCID https://orcid.org/0000-0002-9872-6680

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: The complex nature of late-stage Parkinson's requires multiagency support and leads to an increased burden on family members who assume a multiplicity of responsibilities. The aim of this study is to further understand the lived experiences of family-caregivers and their perception of, and satisfaction with, service provision. Methods: This qualitative substudy was a part of the European multicentre Care of Late-Stage Parkinsonism (CLaSP) project. Purposive sampling resulted in a sample of eleven family-caregivers of people with late-stage Parkinson's, who were interviewed using semistructured open-ended questions. Thematic analysis followed. Conclusion: The intricacies and consequences of the family-caregivers' role and their experience of service provision indicate the need to acknowledge and consider their role and needs, fully involve them in consultations and provide information and joined-up support to improve their well-being, and ensure their continuous significant contribution to the ongoing care of the person with Parkinson's.

Identifiers

PMID36776984
PMCPMC9918353

What OpenQuestion holds

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LicenceCC BY
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.