Building a Parkinson-Network–Experiences from Germany

Munster, Marlena van; Tönges, Lars; Loewenbrück, Kai F.; Warnecke, Tobias; Eggers, Carsten

doi:10.3390/jcm9092743

Cited by 9 publications

(10 citation statements)

References 34 publications

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“…Or how does it address the specifics needs of newly diagnosed patients (described by the “unpredictable” trajectory)? Current models are designed around the patient as a “target audience” or a “consumer” ( van Munster et al, 2020 ) but, as our analysis shows, integrated care models need to adopt a more humanistic and pragmatic vision for understanding how PD patients’ trajectory, community resources, and health service utilization pathways are linked.…”

Section: Discussionmentioning

confidence: 99%

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Co-designing an Integrated Care Network With People Living With Parkinson’s Disease: From Patients’ Narratives to Trajectory Analysis

et al. 2021

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An integrated care model for people living with Parkinson’s disease (PD) offers the promise of meeting complex care needs in a person-centered way that addresses fragmentation and improves quality of life. The purpose of our research was to co-design a care delivery model that supports both social and medical care from the perspective of patients and care partners. In the first step of our co-design approach, participants from five countries were invited to share their experiences of living with PD during a narrative interview. A qualitative analysis of these narrative interviews based on the Corbin and Strauss model was done to map out patients’ trajectories. Three typical trajectories were identified: (a) the “unpredictable” trajectory, (b) the “situated” trajectory, and (c) the “demanding” trajectory. Based on the analysis of these trajectories, we were able to integrate various patient experiences into the design of an integrated care network.

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Section: Discussionmentioning

confidence: 99%

“…Integrated care is designed around patients and care partners and is tailored to their multidimensional needs. The main challenge of building integrated care networks, however, is the need to adapt them to various local contexts and care priorities ( Kessler et al, 2021 ; van Munster et al, 2020 ).…”

Section: Introductionmentioning

confidence: 99%

Co-designing an Integrated Care Network With People Living With Parkinson’s Disease: From Patients’ Narratives to Trajectory Analysis

et al. 2021

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“…Germany currently lacks a patient-centred, nationally coordinated and well-established holistic approach to care that focuses on both supporting PwPD and their families [ 20 ]. A lack of effective communication between healthcare professionals and people with Parkinson’s disease (PwPD) and their relatives is a significant issue.…”

Section: Introductionmentioning

confidence: 99%

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)

Krieger,

Jozwiak,

Ebersbach

et al. 2024

BMC Neurol

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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).

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“…Digital solutions are also suitable for evaluating the disease activity of movement disorders, since tests developed for this purpose can easily be implemented within the framework of e-Health solutions. In Germany, there are regionally implemented digital solutions for PD patients, but there are no nation-wide healthcare models [14] , [16] . As part of the “ParkProReakt” project, a cross-sectoral, proactive, needs-oriented and technology-supported care model is being developed.…”

Section: Introductionmentioning

confidence: 99%