BackgroundThe aim was to explore patients’ experiences of information and their information needs after discharge for colorectal cancer surgery.MethodsThirty one interviews were performed with sixteen patients during the first seven weeks at home after discharge. Patients were included from three hospitals in the south of Sweden, two of which used an enhanced recovery programme.ResultsTrying to regain control in life by using information was the overall theme emerging from the interviews. Patients experienced the bodily changes after surgery and the emotional impact of the cancer disease, and these combined experiences seriou/sly affected their ability to manage their daily lives. They both needed, and were in search of, information to increase participation in their own cancer trajectory and to facilitate the regaining of some measure of control in their lives. Waiting for different kinds of information increased the anguish and fear in the face of an unknown future.ConclusionsThis study showed that receiving information was vital when patients tried to regain control in life after colorectal cancer surgery. The information was necessary in order to facilitate and manage the transition from hospital to home, and the need varied between different transitions. Patients needed more information to manage the daily life at home, but also to understand what the cancer disease really meant to them. This suggests a need for patients to participate more actively in the information and the discharge planning.

Limited evidence was found for self-management support interventions in chronically ill patients with low socio-economic status. Essential characteristics and component(s) of effective self-management support interventions for these patients could not be detected. Rigorous reporting on development and underlying theories in the intervention is recommended.

The results from this study indicate that women and patients with a poorer preoperative health status scored less on information received and would need more time and support to prepare for discharge. The patients expressed a desire for more information about the surgery, how to handle symptoms at home and prognostic information about their future.

No abstract