Being a relative on the sideline to the patient with oesophageal cancer: a qualitative study across the treatment course Background: 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. Aims and objectives: To explore relatives' experiences before the start of treatment and their subsequent roles and needs for participation in treatment decisions. Design: A qualitative approach based on a phenomenologicalhermeneutical methodology was used. Methods: Data consisted of participant observations and semi-structured interviews with 19 relatives of patients with oesophageal cancer. We analysed data with inspiration from Ricoeur's theory of interpretation. Results: 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. Conclusion: 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.
Background: Out-of-hospital cardiac arrest (OHCA) imposes significant consequences for a family, but little is known about relatives' experiences. Objective: Our aim was to explore relatives' experiences with the OHCA and the following months after. Method: A qualitative approach using phenomenological-hermeneutic methodology was applied. Data consisted of semistructured interviews with 12 relatives of OHCA survivors. We analyzed data based on Paul Ricoeur's theory of interpretation. Results: Relatives experienced OHCA as an abrupt and stressful event filled with imposing concerns for the cardiac arrest survivor. Relatives were fellow sufferers confronted with the possibility of bereavement, watching from the sideline with fearful eyes. After the OHCA, relatives experienced a troubled time with anxiety and edginess, monitoring the survivor for signs of a new cardiac arrest and trying to adapt to a new normality. Relatives' previous identities and positions within their families were disrupted. Conclusion: Relatives were challenged with the OHCA and the trajectory after it, experiencing a high level of distress and anxiety. Relatives took on an immense responsibility, always watching the survivor for potential symptoms of a new cardiac arrest. The cardiac arrest and the survivor's possible cognitive impairments gave rise to assuming a new authority as a relative. We advocate for a new family approach to relatives, acknowledging relatives' stress and central role in supporting cardiac arrest survivors.
Patients with curable esophageal cancer or cancer in the esophageal junction face several challenges during the course of their treatment because of the burden of uncertainty in their prognoses and complexity and side effects of the treatment. The aim of this study is to explore patient experiences with illness, treatment, and decision-making in the context of esophageal cancer. A qualitative approach using phenomenological–hermeneutical methodology was used. Data consisted of participant observations and interviews. We analyzed the data based on Ricoeur’s theory of interpretation. The results show that patients with esophageal cancer are putting their ordinary lives on hold and experiencing the meal as a battleground during treatment. Patients strive to maintain autonomy, gain control, and take ownership. The results emphasize the need for a systematic approach to establish an ongoing dialogue with patients throughout the course of treatment.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.