In the Shadows of Patients with Upper Gastrointestinal Cancer: An Interview Study with Next of Kin about Their Experiences Participating in Surgical Cancer Care

Abstract

The study aimed to explore the experiences of participation among the next of kin of patients who had surgery for upper abdominal tumours. This study had a qualitative research design and data were analysed by thematic analysis. Eleven qualitative interviews were conducted with next of kin to patients who had surgery for liver, bile duct or pancreatic malignancy. The following themes emerged: from the shadows to an important role and an inviting and inhibiting environment for participation. Next of kin were a central part of their loved one’s care but often in the shadows. The next of kin described how they were not always invited and often they had to struggle to get involved. Next of kin often have a major psychosocial role to supporting the patient during and after discharge, and therefore need to be invited and involved in the whole care process.