Oncology healthcare professionals (HCPs) and cancer patients often have difficulties in navigating conversations about sexual changes and concerns due to cancer and its treatments. The present study draws on Discursive Psychology to analyze how the topic of sexuality is raised and managed in Dutch oncological consultations. Our corpus consists of 28 audio recordings. We analyzed the discursive practices used by cancer patients and oncology HCPs and to what effect. Patients, on the one hand, employ vagueness, pronouns, and ellipses, while HCPs attribute talk to others and use generalizations, and speech perturbations. Through these practices they collectively keep the topic of sexuality at a distance, thereby constructing it as a delicate topic. Moreover, we explicate the norms related to sexual behavior that cancer patients and oncology HCPs orient to in their talk. Finally, we address ways in which oncology HCPs can open the door on discussing sexual changes with their patients.
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Abstract Specialist oncology nurses (SONs) have the potential to play a major role in monitoring and reporting adverse drug reactions (ADRs); and reduce the level of underreporting by current healthcare professionals. The aim of this study was to investigate the long term clinical and educational efects of real-life pharmacovigilance education intervention for SONs on ADR reporting. This prospective cohort study, with a 2-year follow-up, was carried out in the three postgraduate schools in the Netherlands. In one of the schools, the prescribing qualifcation course was expanded to include a lecture on pharmacovigilance, an ADR reporting assignment, and group discussion of self-reported ADRs (intervention). The clinical value of the intervention was assessed by analyzing the quantity and quality of ADR-reports sent to the Netherlands Pharmacovigilance Center Lareb, up to 2 years after the course and by evaluating the competences regarding pharmacovigilance of SONs annually. Eighty-eight SONs (78% of all SONs with a prescribing qualifcation in the Netherlands) were included. During the study, 82 ADRs were reported by the intervention group and 0 by the control group. This made the intervention group 105 times more likely to report an ADR after the course than an average nurse in the Netherlands. This is the frst study to show a signifcant and relevant increase in the number of well-documented ADR reports after a single educational intervention. The real-life pharmacovigilance educational intervention also resulted in a long-term increase in pharmacovigilance competence. We recommend implementing real-life, context- and problem-based pharmacovigilance learning assignments in all healthcare curricula.
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BACKGROUND: In geriatric oncology, family members frequently accompany patients during medical consultations, providing emotional and practical support while participating in shared decision-making (SDM). Family involvement in SDM can facilitate the decision-making process but also pose challenges for healthcare professionals. Additionally, much of the SDM deliberation occurs outside the clinical setting, making it important to understand family dynamics to ensure treatment decisions align with the patient's values and preferences. Therefore this study aims to explore the experiences and perspectives of family members regarding their involvement in decision-making processes for older patients with cancer, and the subsequent impact on roles and family dynamics.METHODS: Qualitative open in-depth interviews were conducted with 16 family members of 11 patients with cancer of 70 years and older in the Netherlands. Qualitative data analysis was conducted using a thematic analysis approach.RESULTS: Four interconnected themes emerged. The first theme, "Roles" revealed that family members often provide both practical and informational support, and sometimes act as advocates for the patient. The second theme, "Family Values and Beliefs," highlighted a strong sense of unconditional and reciprocal support within families, emphasizing the core value of caring for one another. Third, "Family Dynamics," encompasses: keeping everyone informed, dividing caregiver tasks, dealing with disappointment and sadness, managing different opinions, and coping with uncertainty. Finally, "Dilemma's" describes: family members balancing their own opinions with the patient's preferences, reconciling hope and fear, weighing trust in medical professionals against their own judgment, and balancing caregiving responsibilities with their personal lives. These dilemmas were shaped by roles the family members assumed, the underlying values and beliefs, and family dynamics.CONCLUSION: The findings of this interview study provide valuable insights into the complex roles that family members of older patients with cancer play in medical consultations and treatment decision-making and their dilemma's. These roles are deeply influenced by family values and dynamics, which can significantly shape decision-making processes and outcomes. Understanding these factors can help healthcare professionals as it highlights the evolving responsibilities of family caregivers and the importance of supporting them in navigating the intricacies of treatment decisions while maintaining respect for patient autonomy.
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Background: Shared decision-making (SDM) is often considered the ideal for decision-making in oncology. Views of specific groups such as ethnic minorities have seldom been considered in its development. Aim: In this study we seek to assess in oncology if there is a need for adaptation of the current SDM model to ethnic minorities and to formulate possible adjustments. Design: This study is embedded in empirical bioethics, an interdisciplinary approach integrating empirical data with ethical reasoning to formulate normative conclusions regarding a practice. For the empirical social scientific part, a cross-sectional qualitative study will be conducted; for the ethical reflection the Reflective Equilibrium will be used to develop a coherent view on the application of SDM among ethnic minorities in oncology. Method: Semi-structured interviews combined with visual methods (timelines and relational maps) will be held with healthcare professionals (HCPs), ethnic minority patients, and their relatives to identify values steering the behavior of these actors in SDM. In addition, focus groups (FGs) will be held with ethnic minority community members to identify value structures at the group level. Respondents will be recruited through organizations with access to ethnic minorities and collaborating hospitals. Data will be analyzed using a reflexive thematic analysis through the lens of Schwartz’s value theory. The results of the empirical phase will be included in the RE to formulate possible adjustments of the SDM model, if needed. Discussion: The integration of empirical data with ethical reflection is an innovative method in decision-making. This method enables a systematic and profound assessment of the need for adaptation of SDM and the formulation of theoretically and empirically based suggestions for adaptations of the model. Findings of this study may enrich the SDM model.
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Integrating knowledge and expertise from designers and scientists proposes solutions to complex problems in a flexible and open-minded way. However, little insight is available in how this collaboration works. Therefore, we reflected on a research project aimed at supportive care interventions for child oncology, and detected barriers and enablers for effective designer scientist collaboration. We interviewed medical scientists (n=2), designers (n=5), health care professionals (n=2), design students (n=3), and one design innovation-expert. Enablers appeared a receptive attitude towards innovation, and shared terminology facilitated by participatory design tools, internal communication means, and common goals. Largest barrier was unstable team membership. Future collaborative research projects might benefit when preventing barriers and stimulating enablers.
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Purpose: This study aimed to develop and pretest a systematic conversation approach for nurses to tailor aftercare to oncology patient's goals, unmet needs and wishes. Methods: We used an iterative developmental process for complex interventions: 1. Identifying problems 2. Identifying overall objectives 3. Designing the intervention 4. Pretesting and adapting the intervention. Results: The main results of the problem identification were: non-systematic and incomplete screening of potential issues, caveats in providing information, and shared decision-making. The overall objective formulated was: To develop a model for aftercare conversations based on shared goal-setting and decision-making. The conversation approach consists of four phases: 1. Preparation of the consultation including a questionnaire, 2. Shared goal-setting by means of a tool visualizing domains of life, and 3. Shared care planning by means of an overview of possible choices in aftercare, a database with health care professionals and a cancer survivorship care plan. 4. Evaluation. The results of the pretest revealed that the conversation approach needs to be flexible and tailored to the patient and practice setting, and embedded in the care processes. The conversation approach was perceived as enhancing patient-centeredness and leading to more in-depth consultations. Conclusion: The conversation approach was developed in co-creation with stakeholders. The results of the pretest revealed important implications and suggestions for implementation in routine care. The aftercare conversation approach can be used by nurses to provide tailored patient-centered evidence-based aftercare. Tailored aftercare should support oncology patient's goals, unmet needs and wishes. Further tailoring is needed.
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Objective: We aim to provide a literature overview on patient‐reported barriers and facilitators to participation in Shared Decision Making (SDM) within the setting of oncology. Methodology: Within the set of selected studies for a larger qualitative meta‐summary, using five databases, we selected the studies that had surveyed patients with oncologic illness for further analysis in this paper. Search terms were based on the concepts: ‘decision making’, ‘patient participation’, ‘patient perceptions’ and ‘study design’ aimed at eliciting patients' perspective, including patient surveys, interviews and focus groups. Results: Out of the 90 studies that had been selected for the larger review, we selected 22 articles concerning oncologic illness for more detailed analysis in this review. In total, we identified 33 different barriers and facilitators. Based on the most frequently reported barriers and facilitators, we defined six broad analytical themes, reflecting patients' most frequently recurring challenges (Themes 1 and 2) and needs (Themes 3–6) in this setting: (1) ‘High burdens’, (2) ‘Low self‐efficacy to participate’, (3) ‘Clear information provision’, (4) ‘Social support’, (5) ‘Physicians’ support’, (6) ‘Education, preparation and assertiveness’. Conclusion: The high decisional and emotional burdens oncologic patients experience appear to be specific challenges to SDM in oncology, which often undermine patients' self‐efficacy to participate and complicate patients' engagement in SDM. However, when offered the right support, patients may overcome the existing burdens and become more empowered to engage in SDM. Practice Implications: These insights need to be integrated in SDM strategies so that they may serve the ethical imperative of greater equality and the inclusion of diverse patient groups in different SDM settings.
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Multiple organizations around the world have issued evidence-based exercise guidance for patients with cancer and cancer survivors. Recently, the American College of Sports Medicine has updated its exercise guidance for cancer prevention as well as for the prevention and treatment of a variety of cancer health-related outcomes (eg, fatigue, anxiety, depression, function, and quality of life). Despite these guidelines, the majority of people living with and beyond cancer are not regularly physically active. Among the reasons for this is a lack of clarity on the part of those who work in oncology clinical settings of their role in assessing, advising, and referring patients to exercise. The authors propose using the American College of Sports Medicine's Exercise Is Medicine initiative to address this practice gap. The simple proposal is for clinicians to assess, advise, and refer patients to either home-based or community-based exercise or for further evaluation and intervention in outpatient rehabilitation. To do this will require care coordination with appropriate professionals as well as change in the behaviors of clinicians, patients, and those who deliver the rehabilitation and exercise programming. Behavior change is one of many challenges to enacting the proposed practice changes. Other implementation challenges include capacity for triage and referral, the need for a program registry, costs and compensation, and workforce development. In conclusion, there is a call to action for key stakeholders to create the infrastructure and cultural adaptations needed so that all people living with and beyond cancer can be as active as is possible for them.
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Determining the onset of the dying phase is important, because care aims and interventions change once this phase begins. In the dying phase, maximising comfort is paramount, even if doing so causes a deterioration of cognitive functions. In this delicate context, it is necessary to give special attention to the patient's personal wishes, spiritual guidance, and rituals, and to the emotional support of relatives. To initiate a care plan for the dying, health professionals must recognise and acknowledge when a patient enters the dying phase. This article describes hospital nurses' perspectives on the signs and symptoms that herald the onset of the dying phase in oncology patients, obtained via three focus group discussions. A broad range of signs and symptoms were reported and are presented here as a conceptual model. Further research is needed to determine whether the signs and symptoms that mark the onset of the dying phase in oncology patients may be tumour-specific.
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Purpose: Until now, it is not clear whether there are differences in patient perception between multi-bedded rooms with two and four beds. The purpose of this study was to investigate the effect of the physical (i.e. room type) and psychosocial (i.e. kindness of roommates and extraversion) aspects on the patients’ experience (i.e. pleasantness of the room, anxiety, sleep quality) in multi-bedded rooms in an oncology ward. Design/methodology/approach: A group of 84 hospitalized oncology patients completed a questionnaire on the day of departure. Room types were categorized into two groups: two-person and four-person rooms. Findings: Multivariate logistic regression analyses with the minimum Akaike Information Criterion (AIC) showed no direct main effects of room type (two vs. four-person room), kindness of roommates and extraversion on pleasantness of the room, anxiety and sleep quality. However, the authors found an interaction effect between room type and extraversion on pleasantness of the room. Patients who score relatively high in extraversion rated the room as more pleasant when they stayed in a four-person rather than a two-person room. For patients relatively low in extraversion, room type was not related to pleasantness of the room. Practical implications: The findings allow hospitals to better understand individual differences in patient experiences. Hospitals should inform patients about the benefits of the different room types and potential influences of personality (extraversion) so patients are empowered and can benefit from autonomy and the most appropriate place. Originality/value: This study emphasizes the importance of including four-person rooms in an oncology ward, while new hospital facility layouts mainly include single-bed rooms.
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