Lived Experience of Patients during Treatment of Extranodal NK-/T- Cell Lymphoma: A Phenomenological Inquiry

Abstract

Purpose To understand in greater depth patients’ experiences of living and coping with extranodal NK-/T- cell lymphoma, and to inform the development of models of care for this population. Methods A qualitative descriptive approach including face to face interviews with semi-structured questions was applied in the study. The interviews were audio-recorded and transcribed verbatim. Results Twenty-one patients were interviewed from December 2019 to May 2023. Four key themes emerged: (1) physical challenges and adaptation (symptom burden, shift in social roles); (2) psychological stress and adjustment (denial and anger, delayed diagnosis, and coping with psychological stress); (3) reorganization and adaptation of daily life (focusing on their illness, focusing on the present, and life reorganization); and (4) seeking and feedback of social support (social support, shame, escape, and grateful feedback). Conclusions The findings gave a broad insight into the profound impact of extranodal NK-/T- cell lymphoma. To support patients, easily accessible services are needed to improve their quality of life. That includes timely diagnosis, providing psychological support and information, understanding the patient adjustment and adaptation process, and management of symptoms.