Reflection of illness and strategies for handling advanced lung cancer – a qualitative analysis in patients and their relatives

Anika Sparla, Sebastian Flach-Vorgang, Matthias Villalobos, Katja Krug, Martina Kamradt, Kadiatou Coulibaly, Joachim Szecsenyi, Michael Thomas, Sinikka Gusset-Bährer, Dominik Ose

Lung cancer patients are often diagnosed in an advanced stage of disease. In a situation of palliative treatment, both patients and their relatives experience existential burden. Evidence suggests that multi-professional teams should deal with them as dyads. However, little is known about differences in their individual situation. The purpose of this study is to explore and compare reflections that arise out of the context of diagnosis and to compare how patients and their relatives try to handle advanced lung cancer. Data was collected by qualitative interviews. A total of 18 participants, 9 patients diagnosed with advanced lung cancer (ICD- 10 C-34, stage IV) starting or receiving palliative treatment and 9 relatives were interviewed. Data was interpreted using qualitative content analysis. Reflection aspects were "thoughts about the cause", "meaning of belief" and "experience of inequity". Patients often experienced the diagnosis as inequity and were more receptive for believing in treatment success. The main strategies found were "repression", "positive attitude", "strong focus on the present" and "adjustment of life terms". Patient and relative dyads used the same strategies, but with different emphasis. That life time is limited was more frequently realized by relatives than by patients. While strategies used by relatives are similar to those of patients', they are less reflective and more pragmatic in terms of handling daily life and organizing care. The interviewed patients were mostly not able to takeover these tasks. To strong was their belief in treatment success, their repression of the future and the focus on the present. This implicates, that in terms of end-of-life care, relatives are important to reach patients who are often not receptive to this topic.