Evidence map›Paper›PMID 38890614›Full record

ArticleBMC neurology2024

Exploring the lived experiences of individuals with Parkinson's disease and their relatives: insights into care provision experiences, disease management support, self-management strategies, and future needs in Germany (qualitative study).

Theresia Krieger, Leonie Jozwiak, Georg Ebersbach, Thorsten Suess, Björn Falkenburger, Tim Feige, Carsten Eggers, Tobias Warnecke, Winfried Scholl, Christian Schmidt-Heisch and 3 more

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In one paragraph

Article in BMC neurology, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed, 1 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

8 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Review
  3. Article
  4. Article
  5. Review
  6. Article
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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

13 authors.

Theresia KriegerMedical Psychology | Neuropsychology and Gender Studies, Centre for Neuropsychological Diagnostics and Intervention (CeNDI), Faculty of Medicine, University Hospital Cologne, University of Cologne, Cologne, Germany. theresia.krieger@uk-koeln.de.
Leonie JozwiakMedical Psychology | Neuropsychology and Gender Studies, Centre for Neuropsychological Diagnostics and Intervention (CeNDI), Faculty of Medicine, University Hospital Cologne, University of Cologne, Cologne, Germany.
Georg EbersbachMovement Disorder Clinic, Kliniken Beelitz, Beelitz-Heilstätten, Germany.
Thorsten SuessMovement Disorder Clinic, Kliniken Beelitz, Beelitz-Heilstätten, Germany.
Björn FalkenburgerDepartment of Neurology, University of Technology Dresden, Dresden, Germany.
Tim FeigeDepartment of Neurology, University of Technology Dresden, Dresden, Germany.
Carsten EggersKnappschaftskrankenhaus Bottrop, Department of Neurology, Bottrop, Germany.
Tobias WarneckeDepartment of Neurology, University Hospital Munster, Munster, Germany.
Winfried SchollYoung Parkinson Association, Schneckenheim, Germany.
Christian Schmidt-HeischParkinson Pate Organization, Hamburg, Germany.
Ann-Kristin FolkertsMedical Psychology | Neuropsychology and Gender Studies, Centre for Neuropsychological Diagnostics and Intervention (CeNDI), Faculty of Medicine, University Hospital Cologne, University of Cologne, Cologne, Germany.
Elke KalbeMedical Psychology | Neuropsychology and Gender Studies, Centre for Neuropsychological Diagnostics and Intervention (CeNDI), Faculty of Medicine, University Hospital Cologne, University of Cologne, Cologne, Germany.
Ümran Sema SevenMedical Psychology | Neuropsychology and Gender Studies, Centre for Neuropsychological Diagnostics and Intervention (CeNDI), Faculty of Medicine, University Hospital Cologne, University of Cologne, Cologne, Germany.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundParkinson's disease (PD) significantly impacts the health-related quality of life of affected individuals and their relatives. In order to support the affected individuals and their families in coping with PD, it is essential to offer comprehensive information about their experiences. A comprehensive understanding of their lived experiences with the disease, the healthcare system, applied self-management strategies and their needs is considered crucial for developing a PD support program. Therefore, we aimed to explore the lived experiences and support needs of individuals with PD and their relatives in Germany.

methodsThis non-interventional, qualitative study conducted an explorative status quo and needs assessment. It generated knowledge through semi-structured focus groups and interviews with individuals with PD at various disease stages and their relatives. The interviews were digitally recorded, transcribed verbatim, and analysed using content analysis.

resultsFifty-two individuals with PD and 29 relatives participated in eight focus groups and 13 paired and 13 individual interviews. Four themes with corresponding subthemes emerged: (1) experiences, revealing individuals' experiences around their diagnosis and with disease-specific care provision; (2) management support offers, clarifying who provides support and the type of support offered; (3) self-management, including comprehensibility, meaningfulness and manageability; and (4) future needs, differentiating between deficits and needs. Most participants expressed a sense of abandonment when obtaining self-management strategies and mastering their lives with PD, often referred to as 'life 2.0'. They identified the lack of structured and adequate provision of information, system orientation and social awareness.

conclusionsIn Germany, there is an urgent need for a comprehensive PD care program that addresses the needs of individuals with PD and their relatives from the start of their care trajectory. It could assist individuals in gaining a comprehensive understanding of the disease, obtaining self-management strategies, building a support network, and becoming experts in self-managing their disease. Moreover, it may positively influence their care trajectory and reduce burdens, such as overburdening, fear of progression, and health anxiety.

trial registrationGerman Clinical Studies Register ( https://www.drks.de/DRKS00030090 , No. DRKS00030090, Date of registration: 15.12.2022).

Indexed as

FamilyParkinson DiseaseQualitative ResearchSelf-ManagementAdultAgedAged, 80 and overCaregiversDisease ManagementFemaleFocus GroupsGermanyHealth Services Needs and DemandHumansMaleMiddle AgedExperiences of illnessInformational needsLived experienceManagement support needsParkinson’s diseaseQualitative researchRelativesSelf-management

Identifiers

PMID38890614
PMCPMC11184701

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.