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Patients' experiences and social support needs following the diagnosis and initial treatment of acute leukemia - A qualitative study

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Purpose: This study explores how newly diagnosed patients with acute leukemia (AL) experience the diagnosis and the initial treatment, and their need and preferences for social support. Methods: Explorative semi-structured individual interviews were carried out in patients with AL (n = 18) four to sixteen weeks post diagnosis. Thematic analysis was used to analyze the qualitative interview data. Results: Identified themes were 1) Jolted by the diagnosis, and subtheme Loss of personal autonomy; 2) Restoring normality in everyday life, and subtheme Facing a new social identity; and 3) A lifeline of hope. Being newly diagnosed with AL was experienced as traumatic, which negatively affected personal autonomy and everyday life. There was a pressing need to restore a sense of normality in everyday life while managing a new social identity as a cancer patient. Social support from family, friends and other patients were invaluable and experienced as an important lifeline. Conclusion: Receiving a life threatening diagnose and undergoing chemotherapeutic treatment had a negative impact on everyday life which required re-establishing daily life activities. This increased the need for social support which had a distinct role in facilitating the patients’ coping strategy. Clinical implications: It is important to support and strengthen the patient's social network from the time of diagnosis. Future studies should examine the feasibility and benefit of experienced-based social support from peers (former patients) to patients with AL.

Original languageEnglish
JournalEuropean Journal of Oncology Nursing
Volume41
Pages (from-to)49-55
Number of pages7
ISSN1462-3889
DOIs
Publication statusPublished - 1 Aug 2019

Bibliographical note

Copyright © 2019 Elsevier Ltd. All rights reserved.

    Research areas

  • Acute leukemia, Acute lymphatic leukemia, Acute myeloid leukemia, Autonomy, Peer support, Qualitative interviews, Social support

ID: 58140711