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

<jats:p> 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. </jats:p>

Patient‐reported participation in hepatopancreatobiliary surgery cancer care: A pilot intervention study with patient‐owned fast‐track protocols

“…By increasing the dialogue and exchange of information between health care professionals and patients, participation can occur, which in turn can reduce the incidence of postoperative complications and prolong the length of care (Boulding et al, 2011; Lee et al, 2018). It is also valuable to include the next of kin of this group of patients, as a study has shown that the next of kin are hidden by the patient but should support the patient in different ways after discharge (Ibrahim et al, 2020). Compliance with standardised postoperative care is lower than that with preoperative and intraoperative care.…”

Attitudes and perceptions of healthcare professionals related to family participation in surgical cancer care—A mixed method study

“…Previous studies have shown that the care of family members can be improved concerning their involvement in surgical care. Family members have an important psychosocial role in surgical care but still must struggle to be involved (Ibrahim et al, 2020). Additionally, healthcare professionals do not prioritize tasks that support participation due to a stressful work environment (Andersson et al, 2021).…”