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The Art of Living With Symptoms

A Qualitative Study Among Patients With Primary Brain Tumors Receiving Proton Beam Therapy

Langegård, Ulrica, MSc, RN; Ahlberg, Karin, PhD, RN; Björk-Eriksson, Thomas, PhD, MD; Fransson, Per, PhD, RN; Johansson, Birgitta, PhD, RN; Ohlsson-Nevo, Emma, PhD, RN; Witt-Nyström, Petra, PhD, MD; Sjövall, Katarina, PhD, RN

doi: 10.1097/NCC.0000000000000692
Article: PDF Only

Background Symptom management in conjunction with proton beam therapy (PBT) from patient's perspective has not been explored. Such knowledge is essential to optimize the care in this relatively new treatment modality.

Objective The aim of this study was to explore the process of symptom management in patients with brain tumor receiving PBT.

Methods Participants were 22 patients with primary brain tumor who received PBT, recruited in collaboration with a national center for proton therapy and 2 oncology clinics at 2 university hospitals in Sweden. Interviews using open-ended questions were conducted before, during, and/or after treatment. Verbatim interview transcripts were analyzed using classic Grounded Theory.

Results The art of living with symptoms” emerged as the core concept. This encompassed 3 interconnected symptom management concepts: “Adapting to limited ability,” “Learning about oneself,” and “Creating new routines.” These concepts were summarized in a substantive theoretical model of symptom management. Despite the struggle to manage symptoms, participants lived a satisfactory life.

Conclusions Symptom management in conjunction with PBT comprises a process of action, thoughts, and emotions. The concepts that emerged indicated patients' symptom management strategies were based on their own resources.

Implications for Practice It is important that PBT facilities develop an approach that facilitates the symptom management process based on patients' experiences of symptoms, as well as their actions and available resources.

This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.

Author Affiliations: Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg (Mrs Langegård and Dr Ahlberg); Department of Oncology, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, and Regional Cancer Center West, Gothenburg (Dr Björk-Eriksson); The Skandion Clinic, Uppsala (Drs Björk-Eriksson and Witt-Nyström); Department of Nursing, Umeå University, and Department of Cancercentrum, Norrlands University Hospital, Umeå (Dr Fransson); Experimental Oncology, Department of Immunology, Genetics and Pathology, Uppsala University, Uppsala University Hospital (Dr Johansson); University Healthcare Research Centre, Faculty of Medicine and Health, Örebro University (Dr Ohlsson-Nevo); Department of Immunology, Genetics and Pathology, Section of Oncology, Uppsala University (Dr Witt-Nyström); and Department of Oncology, Skåne University Hospital, and Department of Oncology, Lund University, Sweden (Dr Sjövall).

The authors have no conflicts of interest to disclose.

This work was supported by the Cancer Foundation in Sweden (grant nos. CAN2015/428 and CAN 2016/809).

Correspondence: Ulrica Langegård, MSc, RN, Institute of Health and Care Sciences, University of Gothenburg, Box 457, 405 30 Göteborg, Sweden (

Accepted for publication November 7, 2018.

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