Krieger, Theresia 
ORCID: 0000-0002-7414-7318, Jozwiak, Leonie ORCID: 0009-0004-5470-0712, Ebersbach, Georg, Suess, Thorsten, Falkenburger, Björn, Feige, Tim, Eggers, Carsten, Warnecke, Tobias, Scholl, Winfried, Schmidt-Heisch, Christian, Folkerts, Ann-Kristin ORCID: 0000-0003-2168-140X, Kalbe, Elke ORCID: 0000-0001-8603-2545 and Seven, Ümran Sema ORCID: 0000-0002-9806-7435
(2024).
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).
BMC Neurology, 24 (1).
pp. 1-16.
Springer Nature.
ISSN 1471-2377
Abstract
[Artikel-Nr.: 208] Background: Parkinson’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. Methods: This 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. Results: Fifty-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. Conclusions: In 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 Registration: German Clinical Studies Register ( https://www.drks.de/DRKS00030090 , No. DRKS00030090, Date of registration: 15.12.2022).
| Item Type: | Article |
| Creators: | Creators Email ORCID ORCID Put Code Ebersbach, Georg UNSPECIFIED UNSPECIFIED UNSPECIFIED Suess, Thorsten UNSPECIFIED UNSPECIFIED UNSPECIFIED Falkenburger, Björn UNSPECIFIED UNSPECIFIED UNSPECIFIED Feige, Tim UNSPECIFIED UNSPECIFIED UNSPECIFIED Eggers, Carsten UNSPECIFIED UNSPECIFIED UNSPECIFIED Warnecke, Tobias UNSPECIFIED UNSPECIFIED UNSPECIFIED Scholl, Winfried UNSPECIFIED UNSPECIFIED UNSPECIFIED Schmidt-Heisch, Christian UNSPECIFIED UNSPECIFIED UNSPECIFIED |
| URN: | urn:nbn:de:hbz:38-815683 |
| Identification Number: | 10.1186/s12883-024-03696-y |
| Journal or Publication Title: | BMC Neurology |
| Volume: | 24 |
| Number: | 1 |
| Page Range: | pp. 1-16 |
| Number of Pages: | 16 |
| Date: | 18 June 2024 |
| Publisher: | Springer Nature |
| ISSN: | 1471-2377 |
| Language: | English |
| Faculty: | Faculty of Medicine |
| Divisions: | Faculty of Medicine > Medizinische Psychologie > Abteilung für Medizinische Psychologie |
| Subjects: | Psychology Medical sciences Medicine |
| Uncontrolled Keywords: | Keywords Language Parkinson’s disease ; Qualitative research ; Relatives ; Lived experience ; Experiences of illness ; Self- management ; Informational needs ; Management support needs English |
| ['eprint_fieldname_oa_funders' not defined]: | Publikationsfonds UzK |
| Refereed: | Yes |
| URI: | http://kups.ub.uni-koeln.de/id/eprint/81568 |
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