Treatment and Rehabilitation for Esophageal Cancer-Striving to Meet Obstacles and Long-term Impacts: A Qualitative Descriptive Study.

BACKGROUND: Following esophagogastric cancer treatment, patients with esophageal cancer and their relatives struggle with adjusting to a new everyday life as they experience various challenges after treatment requiring rehabilitation. Health professionals must address long-term impacts on patients' health, everyday life, family functioning, and support needs. OBJECTIVE: This qualitative descriptive study aimed to explore patients', relatives', and health professionals' experience with long-term impacts and rehabilitation after treatment for esophageal cancer. METHODS: A qualitative approach based on a phenomenological-hermeneutical methodology was used. Two methods were selected in the study: focus group interviews with health professionals and individual interviews with patients and relatives. Inductive thematic analysis with inspiration from Braun and Clarke was used for data analysis. RESULTS: Three main themes emerged from the data analysis: (1) forced into limitations in everyday life, (2) learning and navigating a new everyday life, and (3) rehabilitation accepting new normality. CONCLUSION: Patients and relatives experience persistent long-term impacts after treatment for esophageal cancer, making rehabilitation strenuous and demanding. Relatives take considerable responsibility for the patients' rehabilitation but feel invisible and unsupported by health professionals. Health professionals acknowledge the severity of long-term impacts but fail to prepare patients and relatives for the impacts and do not see the relatives' need for support. IMPLICATIONS FOR PRACTICE: The study emphasizes the need for a proactive approach in the healthcare system, addressing patients' and relatives' physical and psychological vulnerability. Cancer nurses need to prepare and involve patients and relatives in treatment, long-term impacts, and rehabilitation.

Decision making in the oesophageal cancer trajectory a source of tension and edginess to patients and relatives: a qualitative study.

PURPOSE: The curative oesophageal cancer continuum-diagnosis, treatment and survivorship represents different phases with its own challenges for the involved parties. The process of treatment decisions and interactions between patients with oesophageal cancer (EC), relatives and health professionals is vital yet not well described. The purpose of the study was to explore patients' and relatives' experiences with the process of decision-making through the EC illness and treatment trajectory. METHODS: Longitudinal explorative design was employed based on ethnographic fieldwork in the form of participant observations inspired by the American anthropologist James Spradley. RESULTS: Sixteen patients and 18 relatives were recruited for participant observations. In total, 184 hours of participant observations were conducted. The study showed that decision-making was filled with tension and edginess. Four themes were identified: 1) The encounter with the medical authority, 2) The need to see the big picture in the treatment trajectory, 3) A predetermined treatment decision, and 4) Meeting numerous different health professionals. CONCLUSION: The EC trajectory and decision-making were filled with anxiety. Patients and relatives lacked an overview of the treatment pathway, leading to their role in decision-making often being governed by the medical authority. Timing information and continuity are vital factors in decision-making.

With Fearful Eyes: Exploring Relatives' Experiences With Out-of-Hospital Cardiac Arrest: A Qualitative Study.

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.

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 phenomenological - hermeneutical 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 Ricœur'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.

Undertaking responsibility and a new role as a relative: a qualitative focus group interview study.

BACKGROUND: Being a relative of a patient with oesophageal cancer can evoke strong emotions and uncertainty about the future. As a consequence of the treatment course for oesophageal cancer and an increase in outpatient treatment, relatives are becoming increasingly responsible for patients' physical and emotional care. There is a lack of research exploring relatives' experiences with illness, treatment and decision-making. AIMS AND OBJECTIVES: To explore relatives' experiences with illness, treatment of the patient and decision-making in the context of oesophageal cancer. DESIGN: A qualitative explorative design was chosen. METHODS: We conducted two focus group interviews with 11 relatives. The analysis was based on Ricoeur's theory of interpretation. RESULTS: Throughout illness and treatment, relatives faced the fear of loss, leading to distress and anxiety. Relatives were simultaneously taking responsibility and asserting a new role during treatment as they regarded treatment as a joint affair. Regarding decision-making, relatives positioned themselves on the sidelines, awaiting the authority of the patients and healthcare professionals to give them space for participation. CONCLUSION: Relatives of patients with oesophageal cancer undergoing treatment are suppressing their anxiety and doubt about the future. As they are undertaking responsibility during treatment, they are claiming control in new areas, which leads to changing roles within the family. However, they do not feel empowered in decision-making because they recognise patients' decision-making authority. This study highlights the complexity of balancing patients' authority with acknowledgement of relatives' role as active collaborators.

A radical change: A qualitative study of patients' experiences of eating and daily living through the first year after oesophageal resection.

PURPOSE: The purpose of this study is to explore the lived experiences of patients in terms of eating and consequences in everyday life in the first year after oesophageal cancer surgery. METHODS: Thirteen patients participated in qualitative interviews one year after surgery for oesophageal cancer. Descriptions capturing the meaning of the lived experiences of patients were then derived from subsequent analysis and interpretation of the interviews. A phenomenological hermeneutical approach comprised the epistemological stance, and theoretical perspectives were drawn from Schutz' theory of everyday life. RESULTS: Patient descriptions of their experiences with food, eating and everyday life in the first year after oesophageal cancer surgery fell into four themes: Adjusting to a different anatomy - food and eating as a dominant and difficult activity; changed body - food and eating as an underlying shadow; feeling different - social consequences of changed eating; a nutritional jungle - guidance and support in an uncertain time. CONCLUSION: The physical and social consequences of oesophageal cancer resection upend everyday structures, requiring patients to adopt a new, conscious and reflexive approach to food and eating as a social activity. Continuous support from healthcare professionals and patient-to-patient interaction can help redefine everyday life.

Patients' Experiences With Illness, Treatment, and Decision-Making for Esophageal Cancer: A Qualitative Study in a Danish Hospital Setting.

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.