Lene Østergaard Jepsen1,2, Mette Terp Høybye3, Dorte Gilså Hansen4, Claus Werenberg Marcher5, Lone Smidstrup Friis6. 1. Department of Hematology, Odense University Hospital, Sdr. Boulevard 29, DK-5000, Odense, Denmark. lene.jepsen@rsyd.dk. 2. Clinical Institute, University of Southern Denmark, Odense, Denmark. lene.jepsen@rsyd.dk. 3. Interdisciplinary Research Unit, Elective Surgery Center, Silkeborg Regional Hospital, Falkevej 3, 8600, Silkeborg, Denmark. 4. The National Research Center of Cancer Rehabilitation, Research Unit of General Practice, University of Southern Denmark, Copenhagen, Denmark. 5. Department of Hematology, Odense University Hospital, Sdr. Boulevard 29, DK-5000, Odense, Denmark. 6. Department of Hematology, National University Hospital, Copenhagen, Denmark.
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.
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.
Authors: Tom Møller; Lis Adamsen; Charlotte Appel; Pernille Welinder; Maria Stage; Mary Jarden; Maiken Hjerming; Lars Kjeldsen Journal: Leuk Lymphoma Date: 2012-04-02
Authors: Lalit Saini; Mark D Minden; Andre C Schuh; Karen W L Yee; Aaron D Schimmer; Vikas Gupta; Eshetu G Atenafu; Cindy Murray; Shannon Nixon; Joseph M Brandwein Journal: Am J Hematol Date: 2011-12-27 Impact factor: 10.047
Authors: Roland B Walter; Lenise R Taylor; Kelda M Gardner; Kathleen Shannon Dorcy; Jennifer E Vaughn; Elihu H Estey Journal: Clin Adv Hematol Oncol Date: 2013