Vorausschauende Versorgungsplanung für Parkinson-Betroffene in fortgeschrittenen Phasen ihrer Erkrankung. Eine qualitative Untersuchung geschilderter Erfahrungen von Betroffenen und ihren Angehörigen mit der PD_PAL Intervention.
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Introduction: Parkinson's disease is the second most common neurodegenerative disease in Germany, and its prevalence increases significantly with age. It causes physical and psychological problems for those affected, making individual care more complex. At the same time, it also creates economic and social challenges. Currently, however, only a few patients receive palliative support or individually tailored care measures. Palliative concepts and Advance Care Planning can help to reduce anxiety, improve quality of life and enable care that is tailored to individual needs.
Methods: The present work is subordinate to the PD_PAL project and the international mixed-methods PD_PAL study. The PD_PAL project aims to improve the situation of people with Parkinson's disease with the help of a customised PD_PAL intervention. This work focuses on the qualitative data from the German part of the study and examines whether the PD_PAL intervention can be implemented within the German healthcare system and leads to improved care for people with Parkinson's disease and their relatives. Data was collected through interviews with participants in the intervention group at the Marburg site. A semi-structured interview guide provided by the PD_PAL project was used. The interviews were conducted by telephone. Template analysis was used for data analysis and served to create a template summarising all topics considered important by the researchers. The interviews were transcribed using the simple transcription system according to Dresing and Pehl. MAXQDA Analytics Pro 2022 was used for data management and analysis.
Results: The qualitative analysis showed results in the following areas: “Expectations of the PD_PAL intervention”, “Feasibility of the PD_PAL intervention” and “Effects”. Participants expected more information, more intensive discussions, and more support. These expectations were mostly met or exceeded. Erroneous expectations arose due to a lack of advance information. The willingness to implement the PD_PAL intervention was demonstrated by the existing willingness to communicate and take action. Discussions about end-of-life issues were encouraged. Repression and pessimism partly impaired the willingness to engage with the content. While some participants saw the PD_PAL intervention as a useful addition to existing structures, others found it to be a hindrance. The time allocated, the involvement of relatives, and the empathy and expertise of the discussion leader reinforced the significance of the intervention. Working through the workbook was mostly effortless, with occasional questions of comprehension and physical or cognitive limitations. The time frame and timing were generally considered appropriate, and the implementation at home was considered easily manageable. Physical condition remained unchanged. Information was gained, attention was drawn to legal planning, wishes were documented and everyday life with the disease was made easier. The exchange promoted discussion and a better mutual understanding of the disease. Mental well-being was influenced individually. Some found questions about death and mood distressing. Coping with the illness improved through more intensive discussions and future development. Many participants would recommend the PD_PAL intervention to others and would like to receive further support even after the PD_PAL intervention has ended.
Discussion: Expectations regarding end-of-life discussions are predominantly positive, as is also the case in this study, which indicates a high level of acceptance for Advance Care Planning interventions and implies their initiation. In order to avoid expectations of failure, comprehensive information about the complexity of the intervention and Advance Care Planning is necessary. The PD_PAL intervention can contribute to improving care, future planning and the psychosocial well-being of Parkinson's patients and their relatives. This is because patients with chronic conditions such as Parkinson's disease in particular express a desire to address issues of preventive care at an early stage. Advance Care Planning allows them to be better prepared and their individual wishes to be taken into account. From the perspective of those affected, a care model such as the PD_PAL intervention is feasible. The participants particularly appreciated the involvement of the discussion facilitator, who was seen as providing valuable support and making a significant contribution to the care and satisfaction of people with Parkinson's disease. Specialised personnel are therefore essential. In addition to professional expertise, they should provide psychosocial support and have sufficient time to accompany patients in their everyday lives. Standardised concepts are needed in Germany to enable the deployment of such personnel. In order to address the limited implementation of Advance Care Planning, existing associations with the end of life should be put into perspective, the positive effects should be emphasised more strongly, and existing gaps in care should be identified. Further research is needed, particularly on the expectations of those affected, on practical feasibility in everyday life, and on the impact of individual elements of this complex intervention.
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This item has been published with the following license: In Copyright