Accentuating patient values in shared decision-making:A mixed methods development of an online value clarification tool and communication training in the context of early phase clinical cancer trials

Objective: In the shared decision-making (SDM) process for potential early phase clinical cancer trial participation, value clarification is highly recommended. However, exploration and discussion of patient values between patients and oncologists remains limited. This study aims to develop an SDM-supportive intervention, consisting of a preparatory online value clarification tool (OnVaCT) and a communication training. Methods: The OnVaCT intervention was developed and pilot-tested by combining theoretical notions on value clarification, with interview studies with patients and oncologists, focus groups with patient representatives and oncologists, and think aloud sessions with patients, following the Medical Research Council (MRC) framework for complex interventions. These human-centered methodologies enabled a user-centered approach at every step of the development process of the intervention. Results: This study shows relevant patient values and oncologists’ perspectives on value exploration and discussion in daily practice. This has been combined with theoretical considerations into the creation of characters based on real-life experiences of patients in the OnVaCT, and how the tool is combined with a communication training for oncologists to improve SDM

Teleconsultation: enhancing personalized palliative care at home. An emperical-ethical analysis

Contains fulltext : 150185.pdf (publisher's version ) (Open Access)The Dutch government aims to transfer care for chronically ill people to the home as much as possible. In an ageing society, this means that primary care physician, homecare agencies, and proxies increasingly become responsible for the chronically ill. How can patients, who are in the last phase of life, and their proxies still receive specialist palliative care at home, if necessary? One potential solution, video consultation, was investigated in this thesis. Eighteen patients with advanced cancer or COPD were followed over time, while regularly having video consultations with hospital-based palliative care specialists. For these patients, that meant receiving extra care and attention at home, where they felt more comfortable and in control. Teleconsultation technology invites to hyperfocus on conversation partners, thus easily causing virtual proximity. If well-protected, this proximity enables intimacy, consolation, and reassurance. It appears that human suffering can be recognized and acknowledged through modern communication technologies. However, a silent ‘being-with’ patients remained impossible to realize through technology, as was physical consolation. This thesis shows what requirements should be met to realize high-quality multidisciplinary or interdisciplinary care via video consultation that results in distance personalized care.Radboud Universiteit Nijmegen, 21 januari 2016Promotores : Vissers, K.C.P., Leeuwen, E. van Co-promotores : Hasselaar, J.G.J., Selm, M. va

[Vaccination refusal; the need for positive influence strategies]

Although vaccinating seems self-evident, the immunization coverage in the Netherlands is decreasing. This decrease is often attributed to a lack of knowledge amongst the public. We argue, however, that it is rather a lack of trust that drives this reduction in uptake. In this article we discuss the role that trust, or rather a lack thereof, plays in vaccination refusal. We underpin our argument with a recent exploration of the way in which vaccination programmes are framed in newspaper articles and on internet forums. We show the importance of rumours and shared experiences (i.e. social influencing) in parents' decision-making process when they consider whether or not to vaccinate their child. To conclude, we argue for the development of positive influence strategies to counteract negative influences from outside the medical profession

Feeling called to care: a qualitative interview study on normativity in family caregivers' experiences in Dutch home settings in a palliative care context

Contains fulltext : 241087.pdf (Publisher’s version ) (Open Access

Life values of elderly people suffering from incurable cancer: A literature review

Item does not contain fulltextOBJECTIVE: Due to aging Western societies, older patients suffering from incurable cancer will present themselves more often to health care professionals. To be of service to these severely ill elderly patients, more knowledge is needed on which life values are guiding them through their last phases of life. This review aims to describe which life values play an important part in the lives of elderly people suffering from incurable cancer. METHODS: We conducted a literature review with a structured search to identify empirical studies (January 1950-February 2016) using six databases. RESULTS: The analysis of thirty articles resulted in the extensive description of eight life values: comfort, continuity, humility, dignity, honesty, optimism, hope and preparedness. CONCLUSION: Elderly patients suffering from incurable cancer use the abovementioned life values to give meaning to a life interrupted by disease. Furthermore, these values will play a role in communication and decision-making. PRACTICE IMPLICATIONS: Knowledge about life values can help professionals discuss and clarify personal preferences with elderly patients suffering from incurable cancer, contributing to more personalized care and treatment. Communication should focus on to what extent patient empowerment, life-prolonging treatment and the involvement of the patient's supporting systems suit the wishes of these patients

[Vaccination refusal; the need for positive influence strategies]

Item does not contain fulltextAlthough vaccinating seems self-evident, the immunization coverage in the Netherlands is decreasing. This decrease is often attributed to a lack of knowledge amongst the public. We argue, however, that it is rather a lack of trust that drives this reduction in uptake. In this article we discuss the role that trust, or rather a lack thereof, plays in vaccination refusal. We underpin our argument with a recent exploration of the way in which vaccination programmes are framed in newspaper articles and on internet forums. We show the importance of rumours and shared experiences (i.e. social influencing) in parents' decision-making process when they consider whether or not to vaccinate their child. To conclude, we argue for the development of positive influence strategies to counteract negative influences from outside the medical profession

Impact of moral case deliberation in healthcare settings: a literature review

Contains fulltext : 200173.pdf (publisher's version ) (Open Access)BACKGROUND: An important and supposedly impactful form of clinical ethics support is moral case deliberation (MCD). Empirical evidence, however, is limited with regard to its actual impact. With this literature review, we aim to investigate the empirical evidence of MCD, thereby a) informing the practice, and b) providing a focus for further research on and development of MCD in healthcare settings. METHODS: A systematic literature search was conducted in the electronic databases PubMed, CINAHL and Web of Science (June 2016). Both the data collection and the qualitative data analysis followed a stepwise approach, including continuous peer review and careful documentation of our decisions. The qualitative analysis was supported by ATLAS.ti. RESULTS: Based on a qualitative analysis of 25 empirical papers, we identified four clusters of themes: 1) facilitators and barriers in the preparation and context of MCD, i.e., a safe and open atmosphere created by a facilitator, a concrete case, commitment of participants, a focus on the moral dimension, and a supportive organization; 2) changes that are brought about on a personal and inter-professional level, with regard to professional's feelings of relief, relatedness and confidence; understanding of the perspectives of colleagues, one's own perspective and the moral issue at stake; and awareness of the moral dimension of one's work and awareness of the importance of reflection; 3) changes that are brought about in caring for patients and families; and 4) changes that are brought about on an organizational level. CONCLUSIONS: This review shows that MCD brings about changes in practice, mostly for the professional in inter-professional interactions. Most reported changes are considered positive, although challenges, frustrations and absence of change were also reported. Empirical evidence of a concrete impact on the quality of patient care is limited and is mostly based on self-reports. With patient-focused and methodologically sound qualitative research, the practice and the value of MCD in healthcare settings can be better understood, thus making a stronger case for this kind of ethics support

Frames and counter-frames giving meaning to palliative care and euthanasia in the Netherlands

Contains fulltext : 233955.pdf (Publisher’s version ) (Open Access