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

Lene Østergaard Jepsen*, Lone Smidstrup Friis, Mette Terp Hoybye, Claus Werenberg Marcher, Dorte Gilså Hansen

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Abstract

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.

OriginalsprogEngelsk
Artikelnummere029470
TidsskriftBMJ Open
Vol/bind9
Udgave nummer11
Antal sider7
ISSN2044-6055
DOI
StatusUdgivet - 1. nov. 2019

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