“I can’t get it into my head that I have cancer…”—A qualitative interview study on needs of patients with lung cancer

BACKGROUND: Caring for patients with advanced lung cancer is of high relevance in different clinical settings. Lung cancer is among the most common causes of death from malignant neoplasms worldwide; with increasing prevalence and mortality. AIM: To get a better understanding of individual patients’ needs, exploring the experiences and meaning of living with advanced lung cancer at the end of life, and to develop strategies for improving patient-centred care in Germany. DESIGN: Qualitative explorative interview study with patients, using grounded theory. SETTING/PARTICIPANTS: A sample of 17 adults living with advanced lung cancer in Lower Saxony/Germany was recruited in two university hospitals. Patients were asked to tell of their experiences of living with advanced lung cancer. The emphasis of this study was the period of palliative tumour therapy. RESULTS: The main phenomenon of living with advanced lung cancer is the feeling of having to redefine one’s own existence, such as social roles within and outside the family. The diagnosis trigger powerlessness, which can lead to information passivity, followed by acceptance of aggressive tumour treatment. Patients perceive a high degree of psychological and social stress, without being able to express this. There is a lack of regular appropriate psychosocial care accompanying chemotherapy. Patients ascribe their physical suffering to the side effects of tumour treatment, which may trigger a desire to die. Finally, patients tend to hide their individual needs, even when asked. CONCLUSIONS: Regarding the patients’ needs, greater emphasis must be placed on psychosocial care as part of the biopsychosocial model to adequately consider the patients’ concerns. Assessments can be helpful to enhance communication at an early stage across all professions into the multi-professional therapy.