Abstract
Purpose
In recent years, patients with acute leukemia (AL) have, to a greater extent, been managed in an outpatient setting where they live at home but appear every other day for follow-up visits at hospital. This qualitative article elucidates how patients with AL experience the different conditions of the inpatient and outpatient settings and how they reflect on these transitions in order to create meaning in and keep up everyday life.
Methods
Qualitative semi-structured individual interviews twice with each AL patient focusing on the outpatient setting, impact on everyday life, responsibility and the home were performed. Twenty-two patients were interviewed the first time, and 15 of these were interviewed the second time. The data were analyzed in an everyday life relational perspective.
Results
Outpatient management facilitates time to be administrated by the patients and thereby the possibility of maintaining everyday life, which was essential to the patients. The privacy ensured by the home was important to patients, and they accepted the necessary responsibility that came with it. However, time spent together with fellow patients and their relatives was an important and highly valued part of their social life.
Conclusions
Approached from the patient perspective, outpatient management provided a motivation for patients as it ensured their presence at home and provided the possibility of taking part in everyday life of the family, despite severe illness and intensive treatment. This may suggest a potential for extending the outpatient management further and also for patient involvement in own care.
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Acknowledgments
The authors wish to thank all the patients who participated in the study for their valuable contributions in a difficult period of their lives. This study was funded by the University of Southern Denmark, the Region of Southern Denmark, the Danish Cancer Society, the Anders Hasselbalch Foundation, the Family Hede Nielsen Foundation and the joint research pool between the National University Hospital and Odense University Hospital supporting the highly specialized functions. The National Research Center of Cancer Rehabilitation, University of Southern Denmark is partly funded by the Danish Cancer Society.
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Informed consent was obtained from all individual participants included in the study. Throughout the manuscript, an ID number identifies participants, and synonyms are used in the quotes to preserve confidentiality. The study was approved by The Regional Scientific Ethical Committees for Southern Denmark (S-20122000 86) and the Danish Data Protection Agency (J. No. 2008-58-0035). Permission to conduct the study was obtained from the Department of Hematology, Odense University Hospital, where the study took place. The first author had no professional medical interaction with the participants during the study period, but has formerly been employed as a physician in the department. Participation in research while undergoing treatment for a serious illness puts strain on patients. We sought, in this study, to pay attention to this by minimizing the extra time they needed to invest. Inclusion was handled solely by the first author to avoid a possible sense of pressure on patients if they were recruited by the regular staff. We recognize that research is always a relational endeavour with implications for the life of its participants.
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The authors declare that they have no competing interests.
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Jepsen, L.Ø., Høybye, M.T., Hansen, D.G. et al. Outpatient management of intensively treated acute leukemia patients—the patients’ perspective. Support Care Cancer 24, 2111–2118 (2016). https://doi.org/10.1007/s00520-015-3012-2
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DOI: https://doi.org/10.1007/s00520-015-3012-2