Encountering an alien world of disease and treatment. A qualitative study on oesophageal cancer patients’ experiences before start of treatment and the process of participation in treatment decisions

Aim: The study explored oesophageal cancer (EC) patients’ experiences before the start of treatment and the process of participation in treatment decisions. Background: EC is a serious and potentially lethal disease. Surgery and perioperative chemotherapy is the established treatment, which results in a treatment course of 6 to 8 months. No studies have explored how patients with EC experience the diagnosis, the time before the diagnosis and start of treatment and how they experience participating in treatment decisions. Design: The study was a qualitative study employing a phenomenological-hermeneutic approach. Methods: Sixteen patients with EC participated. Data collection was carried out using participant observations and semi-structured interviews. Data were analysed with inspiration from Ricœur’s theory of interpretation. Results: The study showed that patients struggle to gain control of the new life situation and alternate between doubt and hope for the future. Maintaining everyday life activities is of importance and helps the patients deal with the diagnosis and forthcoming treatment. Patients acknowledged that the experts made decisions, yet they were aware that experts assessed their capability to access treatment. Patients experienced the time from diagnosis to the start of treatment as being in ‘no man’s land’. Conclusions: EC patients encountered an alien world of disease and treatment and are struggling to gain control of their new life situation. Health professionals tend not to focus on patient expressions of everyday life and patients are not actively invited to participate in decisions.