Being a relative on the sideline to the patient with oesophageal cancer: a qualitative study across the treatment course

Abstract

Being a relative of patients with oesophageal cancer or cancer in the oesophageal junction is stressful, as the healthcare system often overlooks concerns about the future as well as the roles and needs of relatives. There is a lack of research addressing relatives' experiences, roles and needs for participation in decisions. To explore relatives' experiences before the start of treatment and their subsequent roles and needs for participation in treatment decisions. A qualitative approach based on a phenomenological - hermeneutical methodology was used. Data consisted of participant observations and semi-structured interviews with 19 relatives of patients with oesophageal cancer. We analysed data with inspiration from Ricœur's theory of interpretation. The relatives were fellow sufferers, experiencing uncertainties and fear for the future with the patients, but they were simultaneously a challenged anchor during a difficult time, actively involved in handling the diagnosis and the everyday life. The relatives were positioned on the sideline both by the professionals and by themselves; they took a passive and subordinate part in decisions. Relatives are central to cancer care and treatment. Adequate and timely information is imperative for relatives as well for patients in order to facilitate shared decision-making. We advocate for a new approach to relatives in order to prepare the relatives for their roles and support their individual needs but also to acknowledge relatives' knowledge about everyday life from the relatives' perspective.