Introduction: The implementation of oncology care pathways that standardize organizational procedures has improved cancer care in recent years. However, the involvement of “authentic” patients and caregivers in quality improvement of these predetermined pathways is in its infancy, especially the scholarly reflection on this process. We, therefore, aim to explore the multidisciplinary challenges both in practice, when cancer patients, their caregivers, and a multidisciplinary team of professionals work together on quality improvement, as well as in our research team, in which a social scientist, health care professionals, health care researchers, and experience experts design a research project together. Methods and design: Experience-based co-design will be used to involve cancer patients and their caregivers in a qualitative research design. In-depth open discovery interviews with 12 colorectal cancer patients, 12 breast cancer patients, and seven patients with cancer-associated thrombosis and their caregivers, and focus group discussions with professionals from various disciplines will be conducted. During the subsequent prioritization events and various co-design quality improvement meetings, observational field notes will be made on the multidisciplinary challenges these participants face in the process of co-design, and evaluation interviews will be done afterwards. Similar data will be collected during the monthly meetings of our multidisciplinary research team. The data will be analyzed according to the constant comparative method. Discussion: This study may facilitate quality improvement programs in oncologic care pathways, by increasing our real-world knowledge about the challenges of involving “experience experts” together with a team of multidisciplinary professionals in the implementation process of quality improvement. Such co-creation might be challenging due to the traditional paternalistic relationship, actual disease-/treatment-related constraints, and a lack of shared language and culture between patients, caregivers, and professionals and between professionals from various disciplines. These challenges have to be met in order to establish equality, respect, team spirit, and eventual meaningful participation.
"Sociologist of education Annette Lareau is renowned in her field for her compassionate ethnographic work and the insightful ideas she's able to draw from it. With Listening to People, she has given us an extremely practical guide to doing the kind of work she has been celebrated for. Lareau covers just about everything a social scientist needs to know--formulating a topic and honing it down to a good research question, obtaining IRB approval, finding a site and making introductions, conducting high-quality interviews and participant--observation, taking good notes and writing them up later, analyzing the data, and best of all, making clear how much the data analysis and the writing are part of the same process. Her tone throughout is about as straightforward as it gets, and she very generously shares stories of her own mistakes, missteps, and anxieties. Written for students and scholars in sociology, education, communications, social work, and possibly political science, anthropology, and related fields, the book will be an indispensable guide for graduate students and faculty in the social sciences (broadly conceived), and is even suitable for undergraduates"-- Provided by publisher.
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BACKGROUND: Self-monitoring of physical activity (PA) using an accelerometer is a promising intervention to stimulate PA after hospital discharge.OBJECTIVE: This study aimed to evaluate the feasibility of PA self-monitoring after discharge in patients who have undergone gastrointestinal or lung cancer surgery.METHODS: A mixed methods study was conducted in which 41 patients with cancer scheduled for lobectomy, esophageal resection, or hyperthermic intraperitoneal chemotherapy were included. Preoperatively, patients received an ankle-worn accelerometer and the corresponding mobile health app to familiarize themselves with its use. The use was continued for up to 6 weeks after surgery. Feasibility criteria related to the study procedures, the System Usability Scale, and user experiences were established. In addition, 6 patients were selected to participate in semistructured interviews.RESULTS: The percentage of patients willing to participate in the study (68/90, 76%) and the final participation rate (57/90, 63%) were considered good. The retention rate was acceptable (41/57, 72%), whereas the rate of missing accelerometer data was relatively high (31%). The mean System Usability Scale score was good (77.3). Interviewed patients mentioned that the accelerometer and app were easy to use, motivated them to be more physically active, and provided postdischarge support. The technical shortcomings and comfort of the ankle straps should be improved.CONCLUSIONS: Self-monitoring of PA after discharge appears to be feasible based on good system usability and predominantly positive user experiences in patients with cancer after lobectomy, esophageal resection, or hyperthermic intraperitoneal chemotherapy. Solving technical problems and improving the comfort of the ankle strap may reduce the number of dropouts and missing data in clinical use and follow-up studies.
