Kim Dillen1, Melanie Joshi1, Norbert Krumm2, Michaela Hesse3, Holger Brunsch3, Holger Schmidt1, Julia Strupp1, Lukas Radbruch3,4, Roman Rolke2, Raymond Voltz1,5,6,7. 1. Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. 2. Department for Palliative Medicine, Medical Faculty RWTH Aachen University, Aachen, Germany. 3. Department of Palliative Medicine, University Hospital Bonn, Bonn, Germany. 4. Centre for Palliative Care, Malteser Hospital Bonn/Rhein-Sieg, Bonn, Germany. 5. Center for Integrated Oncology Aachen Bonn Cologne Duesseldorf (CIO ABCD), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. 6. Clinical Trials Center (ZKS), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. 7. Center for Health Services Research, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany.
Abstract
OBJECTIVE: A sense of security is important in palliative home care. Yet, knowledge about which components contribute most to feeling secure from the patients' and family caregivers' perspectives, especially since the introduction of specialist palliative home care, is sparse. The goal of the current study was to determine the key components contributing to a sense of security and how they relate to each other as experienced by patients and family caregivers in specialist and generalist palliative home care. METHODS: The current sub-study, as part of a larger study, was performed in different regions in Germany. Palliative care patients and family caregivers of at least 18 years of age, being cared for at home were interviewed using semi-structured interview guides following a three-factor model and analyzed by using a combined quantitative-qualitative-content approach. RESULTS: One hundred and ninty-seven patients and 10 carers completed interviews between December 2017 and April 2019. The majority of patients were diagnosed with an oncological disease. Sense of security was mentioned particularly often suggesting its high relevance. We identified nine subcategories that were all mentioned more frequently by specialist than generalist palliative home care recipients in the following order of priority and relation: (i) patient-centeredness: availability, provision of information/education, professional competence, patient empowerment, and trust (ii) organizational work: comprehensive responsibility, external collaboration, and internal cooperation, and (iii) direct communication. SIGNIFICANCE OF RESULTS: The work of specialist palliative home care services in particular was perceived as very effective and beneficial. Our findings confirm a previously developed three-factor model allowing for generalizability and revealed that availability was most important for improving the sense of security for effective palliative home care.
OBJECTIVE: A sense of security is important in palliative home care. Yet, knowledge about which components contribute most to feeling secure from the patients' and family caregivers' perspectives, especially since the introduction of specialist palliative home care, is sparse. The goal of the current study was to determine the key components contributing to a sense of security and how they relate to each other as experienced by patients and family caregivers in specialist and generalist palliative home care. METHODS: The current sub-study, as part of a larger study, was performed in different regions in Germany. Palliative care patients and family caregivers of at least 18 years of age, being cared for at home were interviewed using semi-structured interview guides following a three-factor model and analyzed by using a combined quantitative-qualitative-content approach. RESULTS: One hundred and ninty-seven patients and 10 carers completed interviews between December 2017 and April 2019. The majority of patients were diagnosed with an oncological disease. Sense of security was mentioned particularly often suggesting its high relevance. We identified nine subcategories that were all mentioned more frequently by specialist than generalist palliative home care recipients in the following order of priority and relation: (i) patient-centeredness: availability, provision of information/education, professional competence, patient empowerment, and trust (ii) organizational work: comprehensive responsibility, external collaboration, and internal cooperation, and (iii) direct communication. SIGNIFICANCE OF RESULTS: The work of specialist palliative home care services in particular was perceived as very effective and beneficial. Our findings confirm a previously developed three-factor model allowing for generalizability and revealed that availability was most important for improving the sense of security for effective palliative home care.
Entities:
Keywords:
Availability; Family caregivers; Palliative care patients; Palliative home care; Sense of security