Purpose Patients’ involvement in their own care is important for those with upper abdominal tumours. Care is often conducted according to standardized fast-track care programs (FTCP), and a shorter hospital stay is one of the goals. However, there is no research providing an in-depth perspective on patients’ experiences of involvement in care. In this qualitative study, we explored experiences of involvement among patients who had surgery for upper abdominal tumours and were cared for according to an FTCP. Methods Qualitative in-depth face-to-face interviews about patient involvement in care were conducted with 20 patients who had surgery for the liver, bile duct, or pancreatic cancer using an open-interview guide. Results The most important findings are that customized information and active dialogue about care decisions stimulate patient involvement. We identified three themes from the analysed data: involvement depended on the quality of information, communication and involvement during the care period, and safety at discharge. Conclusions Individualized care and continuous information about treatment and care goals in the FTCP during the care process create trust between patients and healthcare professionals and increase patient experiences of involvement.

Purpose To explore the experiences of oxaliplatin-induced neurotoxic side effects among patients with colorectal cancer (CRC), and how these side effects influenced their daily lives over time.Methods To assess neurotoxic side effects, ten patients were repeatedly interviewed. The patients were recruited from two hospitals in south of Sweden, had stage II-III CRC, and had been treated with adjuvant oxaliplatin postoperatively, from November 2013 to October 2015. They had received FOLFOX and XELOX, with a mean total dose of 791 mg oxaliplatin. After completed chemotherapy, at 3, 6 and 12 months into the post-treatment phase, 25 interviews were conducted and thematic analysis was used according to Braun and Clarke.Results Oxaliplatin-induced neurotoxicity affects patients in several ways in the long term. Four themes were identified: Expectation of cure, Dubiety, Normalization and Learn to live with neurotoxity. The findings of this study describe the trajectory of neurotoxicity and its impact on these patients' life situation. The findings confirmed that neurotoxicity is multi-faceted and that the experience of it changes over time. ConclusionThe desire to survive stimulates adaptations and strategies to manage daily life, and patients learn to live with the neurotoxic side effects. This study provides evidence that these patients need individual attention and support during the trajectory of neurotoxic side effects. Current care provision is inadequate due to lack of knowledge of the ways in which neurotoxicity impacts the patient's daily life. This study provides insights that could be used to develop more person-centered care.

Fast‐track programmes are aimed at improving perioperative care. The purpose of this study was to identify and explore patient participation among patients who had surgery for liver, bile duct or pancreatic cancer and followed a fast‐track programme. A total of 116 questionnaires to investigate patient participation were analysed. Information was important for the patients, as was having the opportunity to ask questions and express personal views. The results showed differences by sex; men responded to a greater extent that they did not want to make decisions as a patient (p = 0.044) and that they had been motivated to take more responsibility for their future health (p = 0.011). Patients with pancreatic cancer discussed treatment goals with doctors to a greater extent than did patients with liver cancer (p = 0.041). Half of the patients perceived that they had not been involved in their care planning after discharge but had a desired to be involved. This seems to be an important point to improve in future care, and also that professionals should be aware of patients’ needs for information and participation, especially at discharge.

BackgroundIn cancer care, mobile phone-based systems are becoming more widely used in the assessment, monitoring, and management of side effects.ObjectiveTo explore the experiences of patients with colorectal cancer on using a mobile phone-based system for reporting neurotoxic side effects.MethodsEleven patients were interviewed (ages 44-68 years). A semistructured interview guide was used to perform telephone interviews. The interviews were transcribed verbatim and analyzed with qualitative content analysis.ResultsThe patients' experiences of using a mobile phone-based system were identified and constructed as: “being involved,” “pacing oneself,” and “managing the questions.” “Being involved” refers to their individual feelings. Patients were participating in their own care by being observant of the side effects they were experiencing. They were aware that the answers they gave were monitored in real time and taken into account by health care professionals when planning further treatment. “Pacing oneself” describes how the patients can have an impact on the time and place they choose to answer the questions. Answering the questionnaire was easy, and despite the substantial number of questions, it was quickly completed. “Managing the questions” pointed out that the patients needed to be observant because of the construction of the questions. They could not routinely answer all the questions. Patients understood that side effects can vary during the cycles of treatment and need to be assessed repeatedly during treatment.ConclusionsThis mobile phone-based system reinforced the patients’ feeling of involvement in their own care. The patients were comfortable with the technology and appreciated that the system was not time consuming.

No abstract

Patient involvement in surgical care-Healthcare personnel views and behaviour regarding patient involvement Background: All professions in surgical care have a responsibility to include patients in their health care. By Swedish law, all care should be done in dialogue with the patient. The essential part of health care is the meeting between patient and healthcare professional. In the interaction, a decision can be made, and needs can be identified to a safer care. Previous studies on patient participation have focussed on patients' perspectives in surgical care, but there is a paucity of studies about the personnel's perspective of estimated patient involvement in surgical care. Aim: The aim of this study was to identify and describe healthcare personnel's view and behaviour regarding patient involvement in surgical care. Method: A quantitative study with various professions was conducted. A validated questionnaire was used, remaining questions grouped under following areas: patient involvement, acute phase, hospital time, discharge phase and questions on employment and workplace. Results: A total of 140 questionnaires were sent out to a surgical clinic in Sweden, and 102 questionnaires were answered. All professionals stated that clear information is an important part of patient involvement in surgical care. Statistically significant differences existed between the professions in the subscale information. Physicians rated their information higher than the Registered Nurses (p = 0.005) and the practical nurses did (p = 0.001). Hindrances to involving patients were lack of time and other priority tasks. Conclusions: Professionals in surgical care graded information to be the most important thing for patient involvement. Participation in important decisions, including the possibility to express personal views and ask questions, is important factors for patient involvement. Barriers against patient involvement are lack of time and prioritisation of other work activities.

Background: Oxaliplatin (OXA) is frequently used in the treatment of patients with colorectal cancer (CRC) and OXA-induced neurotoxic side effects is common. Real time patient-reported neurotoxic side effects and impact on the patient's daily activities, are sparse in existing studies. Objective: This study aimed to identify and assess patient-reported OXA-induced neurotoxic side effects and their impact on the patient's daily activities, during and after chemotherapy. Methods: In a multicentre prospective longitudinal study, 46 chemo naïve patients with CRC treated with postoperative adjuvant OXA-based chemotherapy were monitored during treatment and at 3-, 6-, 9-and 12-month follow-ups. Patients were recruited from September 2013 to June 2016. In total, 370 OANQ (Oxaliplatin-Associated Neurotoxicity Questionnaire) responses were available for analysis. A mobile phone-based system was used to receive real time assessments. Results: All patients reported neurotoxic side effects and impact on daily activities during treatment. The side effects changed in character and body location over time, and had an impact on the daily activities. Conclusions: The high prevalence of OXA-induced neurotoxic side effects significantly interfered with the patients' daily activities. We found significant differences between baseline data and follow-up time points for neurotoxicity, and the patients had not returned to baseline after one year.

Patient participation is highly important for numerous reasons (World Health Organization, 2013); for example, it is associated with improved recovery, treatment outcomes, and rehabilitation (Arnetz et al., 2004), as well as increased motivation, better treatment outcomes, and greater satisfaction with the given care (Vahdat et al., 2014). Many countries, including Sweden, encourage patient participation by means of legislations and standards (Nolte et al., 2020). Yet, even if patient participation is advocated