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Availability as key determinant in the palliative home care setting from the patients’ and family caregivers’ perspectives: A quantitative-qualitative-content analysis approach

Published online by Cambridge University Press:  04 December 2020

Kim Dillen Open the ORCID record for Kim Dillen [Opens in a new window] ,
Melanie Joshi ,
Norbert Krumm ,
Michaela Hesse ,
Holger Brunsch ,
Holger Schmidt ,
Julia Strupp ,
Lukas Radbruch ,
Roman Rolke  and
Raymond Voltz
Kim Dillen*
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Melanie Joshi
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Norbert Krumm
Affiliation:
Department for Palliative Medicine, Medical Faculty RWTH Aachen University, Aachen, Germany
Michaela Hesse
Affiliation:
Department of Palliative Medicine, University Hospital Bonn, Bonn, Germany
Holger Brunsch
Affiliation:
Department of Palliative Medicine, University Hospital Bonn, Bonn, Germany
Holger Schmidt
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Julia Strupp
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Lukas Radbruch
Affiliation:
Department of Palliative Medicine, University Hospital Bonn, Bonn, Germany Centre for Palliative Care, Malteser Hospital Bonn/Rhein-Sieg, Bonn, Germany
Roman Rolke
Affiliation:
Department for Palliative Medicine, Medical Faculty RWTH Aachen University, Aachen, Germany
Raymond Voltz
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany Center for Integrated Oncology Aachen Bonn Cologne Duesseldorf (CIO ABCD), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany Clinical Trials Center (ZKS), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany Center for Health Services Research, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
*
Author for correspondence: Kim Dillen, Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Kerpener Strasse 62, 50924 Cologne, Germany. E-mail: kim.dillen@uk-koeln.de
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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.

Keywords

AvailabilityFamily caregiversPalliative care patientsPalliative home careSense of security
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 5 , October 2021 , pp. 570 - 579
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Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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Footnotes

†

See Appendix section for APVEL consortium members.

*

Contributed equally.

References

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