Evidence map›Paper›PMID 32651330›Full record

ArticleJournal of Parkinson's disease2020

"How Long Can I Carry On?" The Need for Palliative Care in Parkinson's Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers.

Herma Lennaerts-Kats, Anne Ebenau, Maxime Steppe, Jenny T van der Steen, Marjan J Meinders, Kris Vissers, Marten Munneke, Marieke Groot, Bastiaan R Bloem

Open access · bronzeAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of Parkinson's disease, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 4 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
21citing papers in PubMed, 4 pooled it
2.3field-weighted citation impact, top 11% of its field
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

21 citing papers in PubMed, 4 syntheses or guidelines pooled it, 32 citations in OpenAlex.

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  11. There is 'no cure for caregiving': the experience of women caring for husbands living with Parkinson's disease.International journal of qualitative studies on health and well-being · 2024
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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

9 authors at 1 institution in 1 country.

Herma Lennaerts-KatsRadboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Department of Neurology, Centre of Expertise for Parkinson & Movement Disorders, Nijmegen, the Netherlands.
Anne EbenauRadboud University Medical Center (Radboudumc), Department of Anesthesiology, Pain and Palliative Care, Nijmegen, The Netherlands.
Maxime SteppeRadboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Department of Neurology, Centre of Expertise for Parkinson & Movement Disorders, Nijmegen, the Netherlands.
Jenny T van der SteenRadboud University Medical Center (Radboudumc), Nijmegen, Department of Primary and Community Care, Nijmegen, The Netherlands; and Leiden University Medical Center, Department of Public Health and Primary Care, Leiden, The Netherlands.
Marjan J MeindersRadboud University Medical Center (Radboudumc), Radboud Institute for Health Sciences, Scientific Center for Quality of Healthcare, Nijmegen, the Netherlands.
Kris VissersRadboud University Medical Center (Radboudumc), Department of Anesthesiology, Pain and Palliative Care, Nijmegen, The Netherlands.
Marten MunnekeRadboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Department of Neurology, Centre of Expertise for Parkinson & Movement Disorders, Nijmegen, the Netherlands.
Marieke GrootRadboud University Medical Center (Radboudumc), Department of Anesthesiology, Pain and Palliative Care, Nijmegen, The Netherlands.
Bastiaan R BloemRadboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Department of Neurology, Centre of Expertise for Parkinson & Movement Disorders, Nijmegen, the Netherlands.
Radboud University Nijmegen · NL

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundFamily caregivers provide the majority of care for people with Parkinson's disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life.

objectiveWe set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD.

methodsTen bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed.

resultsWe identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one's care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients' preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided.

conclusionThese findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals' awareness of family and bereaved caregivers' needs may mitigate these long-term detrimental effects.

Indexed as

BereavementAdultAgedCaregiversFamilyFemaleGuiltHealth Knowledge, Attitudes, PracticeHumansMaleMiddle AgedPalliative CareParkinson DiseaseQualitative ResearchAnticipatory bereavementbereaved family caregiversgriefpalliative careParkinson’s diseasepost-caregiving

Identifiers

PMID32651330
PMCPMC8764597
OpenAlexW3042063729

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

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.