Cancer and its treatments cause significant changes in sexuality that affect the quality of life of both patients and their partners. As these issues are not always discussed with healthcare professionals, cancer patients turn to online health communities to find answers to questions or for emotional support pertaining to sexual issues. By using a discursive psychological perspective, we explore the social actions that participants in online health forums perform when discussing sexuality. Data were collected by entering search terms in the search bars of three online health forums. Our analysis of 213 threads, containing 1,275 posts, provides insight into how participants who present themselves as women with cancer account for their sexual issues and, in doing so, orient to two intertwined norms: Having untroubled sex is part of a couple’s relationship, and male partners are entitled to having untroubled sex. We discuss the potential harmful consequences of orienting to norms related to sexual behaviour. Yet, our findings can also help healthcare professionals in broaching the topic of sexuality in conversations with cancer patients. The insights of this study into what female patients themselves treat as relevant can assist health professionals in better aligning with patients’ interactional concerns.
Cancer and its treatments cause significant changes in sexuality that affect the quality of life of both patients and their partners. As these issues are not always discussed with healthcare professionals, cancer patients turn to online health communities to find answers to questions or for emotional support pertaining to sexual issues. By using a discursive psychological perspective, we explore the social actions that participants in online health forums perform when discussing sexuality. Data were collected by entering search terms in the search bars of three online health forums. Our analysis of 213 threads, containing 1,275 posts, provides insight into how participants who present themselves as women with cancer account for their sexual issues and, in doing so, orient to two intertwined norms: Having untroubled sex is part of a couple’s relationship, and male partners are entitled to having untroubled sex. We discuss the potential harmful consequences of orienting to norms related to sexual behaviour. Yet, our findings can also help healthcare professionals in broaching the topic of sexuality in conversations with cancer patients. The insights of this study into what female patients themselves treat as relevant can assist health professionals in better aligning with patients’ interactional concerns.
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.
Relatie tussen spiermassa en vroegtijdig stoppen van chemotherapie bij patienten met hoofd-halskankerIn this study, we aim to assess whether low pre-treatment muscle mass, measured with CT at thoracic (T4) or lumbar level (L3) is associated with early termination of chemotherapy related to toxicity in head and neck cancer (HNC) patients.
Every year in the Netherlands around 10.000 people are diagnosed with non-small cell lung cancer, commonly at advanced stages. In 1 to 2% of patients, a chromosomal translocation of the ROS1 gene drives oncogenesis. Since a few years, ROS1+ cancer can be treated effectively by targeted therapy with the tyrosine kinase inhibitor (TKI) crizotinib, which binds to the ROS1 protein, impairs the kinase activity and thereby inhibits tumor growth. Despite the successful treatment with crizotinib, most patients eventually show disease progression due to development of resistance. The available TKI-drugs for ROS1+ lung cancer make it possible to sequentially change medication as the disease progresses, but this is largely a ‘trial and error’ approach. Patients and their doctors ask for better prediction which TKI will work best after resistance occurs. The ROS1 patient foundation ‘Stichting Merels Wereld’ raises awareness and brings researchers together to close the knowledge gap on ROS1-driven oncogenesis and increase the options for treatment. As ROS1+ lung cancer is rare, research into resistance mechanisms and the availability of cell line models are limited. Medical Life Sciences & Diagnostics can help to improve treatment by developing new models which mimic the situation in resistant tumor cells. In the current proposal we will develop novel TKI-resistant cell lines that allow screening for improved personalized treatment with TKIs. Knowledge of specific mutations occurring after resistance will help to predict more accurately what the next step in patient treatment could be. This project is part of a long-term collaboration between the ROS1 patient foundation ‘Stichting Merels Wereld’, the departments of Pulmonary Oncology and Pathology of the UMCG and the Institute for Life Science & Technology of the Hanzehogeschool. The company Vivomicx will join our consortium, adding expertise on drug screening in complex cell systems.
De centrale onderzoeksvraag is: "Hoe kunnen familieleden van oudere oncologie patiënten optimaal betrokken worden in het besluitvormingstraject rondom de behandeling?". Dit wordt onderzocht vanuit 3 perspectieven: de oudere oncologie patiënt zelf, de familieleden en de zorgprofessional (verpleegkundigen, artsen en andere betrokken zorgprofessionals). In een combinatie van kwalitatief en kwantitatief onderzoek wordt op verschillende momenten in het besluitvormingstraject (voor/tijdens en/of na de behandeling en/of opname) gekeken naar de rol van familieleden en factoren die van invloed zijn op deze rol.
