The role of rehabilitation in patients undergoing oesophagectomy for cancer and pre-malignant disease: A qualitative exploration of the views of patients, carers and healthcare providers

Abstract

Objective Oesophagectomy for cancer is associated with significant morbidity and mortality, and reduced quality of life. Structured rehabilitation potentially offers improved physical and psychological outcomes. We aimed to explore patient, carer and healthcare provider attitudes and preferences towards the role of rehabilitation. Methods We interviewed 15 patients who had undergone an oesophagectomy, 10 carers and 13 healthcare providers about perceived impacts of treatment; preferred components of a rehabilitation program; barriers/enablers of support provision; and participation in rehabilitation programs. Data were analysed using framework analysis. Results The overarching theme was “Getting back to normal.” Diagnosis of disease signified a disruption to the normal trajectory of patients’ lives and the post‐treatment period was characterised as striving to return to normal. Patients and carers focused on rehabilitation needs post‐treatment including dietary support, physiotherapy and healthcare provider support. Healthcare providers described rehabilitation as potentially beneficial from the pre‐treatment phase and, along with carers, highlighted the importance of psychological support. Barriers included access to services, cost of service provision and appointment burden. Conclusion A need for rehabilitation services was identified by healthcare providers from the point of diagnosis, rather than only after surgery. Implications include improved service provision by healthcare institutions for patients undergoing oesophagectomy.

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

“…Relatives were sidelined by the professionals and by their own behaviour, taking a subordinate part in decisions. This could be due to the fact that relatives trusted health professionals to help in navigating the illness and treatment course, which is similar to other findings (4,9). However, the relatives' trust in health professionals could also stand in the way for participating in decisions.…”

“…A cancer diagnosis affects the whole family and may be physically, emotionally, socially and financially demanding to relatives, yet the healthcare system often overlooks the role and needs of relatives (1,2). Being a relative to patients with oesophageal cancer or cancer in the oesophageal junction (EC) is stressful, involving concerns about the future, given that patients with EC have a 5-year survival rate of 15-34% (3)(4)(5). Furthermore, the relatives are burdened by a long treatment course on 6-9 months, which in Denmark and most other countries include surgery in combination with chemo radiation or chemo therapy (6).…”

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

“…Patients with EC can be burdened by the uncertain prospect of dying and in dealing with a complex and efficient health care system, in which tests and treatment are carried out quickly leaving them little time to adapt and consider decisions and the consequences of the treatment (Bull et al, 2019; Lagergren et al, 2017; Larsen et al, 2019; Mansour et al, 2017). Having a life-threatening illness such as EC makes it challenging to patients and relatives to survey the treatment course and comprehend consequences to treatment (Andreassen et al, 2007; Dempster et al, 2011).…”

“…Their suffering was associated with patients’ symptoms and side effects of treatment, which affect their and their relatives’ social world and relationships. Patients experience the treatment as strenuous and thus try to control everyday life and manage the effects thereof (Bull et al, 2019; Hellstadius et al, 2019).…”

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

“…Relatives of patients experience cancer as a death threat for the patient, bringing up strong emotions and a loss of certainty about the future (12–14). Moreover, relatives often adopt the position of buffers, feeling responsible for protecting the patient from distress and sometimes withholding information (14).…”