Rehabilitation during intensive treatment of acute leukaemia including allogenic stem cell transplantation: a qualitative study of patient experiences

Objectives The diagnosis and treatment of acute leukaemia (AL) affect physical, psychosocial and existential functioning. Long-lasting treatment periods with impaired immune system, hygienic and social restrictions challenge patient well-being and rehabilitation as compared with other individuals wi...

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Main Authors: Lene Østergaard Jepsen, Lone Smidstrup Friis, Mette Terp Hoybye, Claus Werenberg Marcher, Dorte Gilså Hansen
Format: Article
Language:English
Published: BMJ Publishing Group 2019-11-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/9/11/e029470.full
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author Lene Østergaard Jepsen
Lone Smidstrup Friis
Mette Terp Hoybye
Claus Werenberg Marcher
Dorte Gilså Hansen
author_facet Lene Østergaard Jepsen
Lone Smidstrup Friis
Mette Terp Hoybye
Claus Werenberg Marcher
Dorte Gilså Hansen
author_sort Lene Østergaard Jepsen
collection DOAJ
description Objectives The diagnosis and treatment of acute leukaemia (AL) affect physical, psychosocial and existential functioning. Long-lasting treatment periods with impaired immune system, hygienic and social restrictions challenge patient well-being and rehabilitation as compared with other individuals with cancer. This study elucidates how AL patients, treated with curative intent in an outpatient setting, assess their physical, psychosocial and existential capability during and following treatment, and furthermore reports on the health initiatives offered to support their rehabilitation.Design, setting, participants and interventions We conducted qualitative, semi-structured individual interviews with 16 AL patients, 6 months after end of treatment in the patients’ homes. This was the final interview, in a line of three, carried out as part of a larger qualitative study.Results The data were analysed thematically through an inductive ongoing process consisting of four steps. The final step, selective coding, resulted in the three categories: physical activity, mental well-being and social activity. None of the patients were satisfied with their physical capability at the time of interview and experienced substantial impairment of functional capabilities. All patients struggled with anxiety and expressed a need for continuous progress in treatment and well-being to feel safe. It took an unexpected large effort to regain a meaningful social life, and patients still had to prioritise activities.Conclusions AL patients suffered physically, psychologically and existentially throughout their illness trajectory. Rehabilitation initiatives deriving from the healthcare system and municipalities held room for improvement. Future programmes should pay attention to the contextual changes of treatment of this patient group and individuals’ changing needs and motivation of physical exercise.
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spelling doaj-art-2fb9b983562246498a31d448e8b975fc2024-11-29T03:10:07ZengBMJ Publishing GroupBMJ Open2044-60552019-11-0191110.1136/bmjopen-2019-029470Rehabilitation during intensive treatment of acute leukaemia including allogenic stem cell transplantation: a qualitative study of patient experiencesLene Østergaard Jepsen0Lone Smidstrup Friis1Mette Terp Hoybye2Claus Werenberg Marcher3Dorte Gilså Hansen41 Hematology, Odense Universitetshospital, Odense, Denmark2 Hematology, Rigshospitalet, Kobenhavn, Denmark3 Interdisciplinary Research Unit, Elective Surgery Center, Regionshospitalet Silkeborg, Silkeborg, Denmark4 Hematology, Odense Universitetshospital, Odense, Denmark15 Institute of Regional Health Research, University of Southern Denmark, Odense, Syddanmark, DenmarkObjectives The diagnosis and treatment of acute leukaemia (AL) affect physical, psychosocial and existential functioning. Long-lasting treatment periods with impaired immune system, hygienic and social restrictions challenge patient well-being and rehabilitation as compared with other individuals with cancer. This study elucidates how AL patients, treated with curative intent in an outpatient setting, assess their physical, psychosocial and existential capability during and following treatment, and furthermore reports on the health initiatives offered to support their rehabilitation.Design, setting, participants and interventions We conducted qualitative, semi-structured individual interviews with 16 AL patients, 6 months after end of treatment in the patients’ homes. This was the final interview, in a line of three, carried out as part of a larger qualitative study.Results The data were analysed thematically through an inductive ongoing process consisting of four steps. The final step, selective coding, resulted in the three categories: physical activity, mental well-being and social activity. None of the patients were satisfied with their physical capability at the time of interview and experienced substantial impairment of functional capabilities. All patients struggled with anxiety and expressed a need for continuous progress in treatment and well-being to feel safe. It took an unexpected large effort to regain a meaningful social life, and patients still had to prioritise activities.Conclusions AL patients suffered physically, psychologically and existentially throughout their illness trajectory. Rehabilitation initiatives deriving from the healthcare system and municipalities held room for improvement. Future programmes should pay attention to the contextual changes of treatment of this patient group and individuals’ changing needs and motivation of physical exercise.https://bmjopen.bmj.com/content/9/11/e029470.full
spellingShingle Lene Østergaard Jepsen
Lone Smidstrup Friis
Mette Terp Hoybye
Claus Werenberg Marcher
Dorte Gilså Hansen
Rehabilitation during intensive treatment of acute leukaemia including allogenic stem cell transplantation: a qualitative study of patient experiences
BMJ Open
title Rehabilitation during intensive treatment of acute leukaemia including allogenic stem cell transplantation: a qualitative study of patient experiences
title_full Rehabilitation during intensive treatment of acute leukaemia including allogenic stem cell transplantation: a qualitative study of patient experiences
title_fullStr Rehabilitation during intensive treatment of acute leukaemia including allogenic stem cell transplantation: a qualitative study of patient experiences
title_full_unstemmed Rehabilitation during intensive treatment of acute leukaemia including allogenic stem cell transplantation: a qualitative study of patient experiences
title_short Rehabilitation during intensive treatment of acute leukaemia including allogenic stem cell transplantation: a qualitative study of patient experiences
title_sort rehabilitation during intensive treatment of acute leukaemia including allogenic stem cell transplantation a qualitative study of patient experiences
url https://bmjopen.bmj.com/content/9/11/e029470.full
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