Patients' experiences of living with oesophageal cancer.
OBJECTIVE
The aim of this study is to describe patients' experiences of living with oesophageal cancer and how they seek information.


BACKGROUND
Oesophageal cancer is a devastating disease with poor prognosis. Nursing care for individuals with oesophageal cancer requires increased knowledge of how they experience illness and how it affects them.


METHODS
Data were collected by semi-structured, qualitative interviews with 13 participants. Content analysis was used to analyse data.


RESULTS
Four themes were identified: (i) Experiences of becoming a patient diagnosed with oesophageal cancer is distinguished by the participants' experiences of vague symptoms, of receiving the diagnosis and of existential concerns evoked by the illness. (ii) Experiences of undergoing investigations and treatment consist of the participants' experiences of extreme tiredness in relation to investigations and treatment. (iii) Experiences of intrusions in daily life is conceptualized by the participants' experiences of how the illness influenced their daily life. (iv) Managing a life-threatening illness consists of a variety of strategies, which the participants employed to manage their life-threatening illness.


CONCLUSIONS
The participants were unprepared of receiving a diagnosis of oesophageal cancer. Dysphagia, fatigue and uncertainty influenced the participants' everyday life. To manage the illness one of their strategies was seeking for information. The physicians were considered the main source of information, but family as well as friends with medical knowledge were also acknowledged as valuable sources.


CONCLUSIONS
Understanding patients' experiences of living with oesophageal cancer is important to improve nursing care. When caring for these patients, focus ought to be on the whole family. In nursing care, it is important to be aware of the effects of dysphagia and fatigue. Health-care professionals ought to organize meetings with fellow patients and recommend literature and websites that provide patients with high quality information.
Andreassen
Sissel
S
Division of Nursing, Karolinska Institutet Danderyd Hospital and Sophiahemmet University College, Stockholm, Sweden. sissel.anderssen@sophiahemmethogskola.se
Randers
Ingrid
I
Näslund
Erik
E
Stockeld
Dag
D
Mattiasson
Anne-Cathrine
AC