Introduction: Many older patients with cancer have their family members, often their adult children, involved in a process of treatment decision making. Despite the growing awareness that family members can facilitate a process of shared decision making (SDM), literature about SDM pays little attention to family relations and strategies to facilitate family involvement in decision making processes. Objective: This study aimed to 1. explore surgeons' and nurses' perceptions about involvement of adult children in treatment decision-making for older patients; and 2. identify strategies they use to ensure positive family involvement. Methods: Semi-structured interviews were conducted with 13 surgical oncologists and 13 oncology nurses in two Dutch hospitals. Qualitative content analysis was conducted according to the steps of thematic analysis. Results: Surgeons and nurses indicated that adult children's involvement in decision-making increases when patients become frail. They reported beneficial and challenging characteristics of this involvement. Six strategies to stimulate positive involvement of adult children in the decision-making process were revealed: 1. Focus on the patient; 2. Actively involve adult children; 3. Acknowledge different perspectives; 4. Get to know the family system; 5. Check that the patient and family members understand the information; and 6. Stimulate communication and deliberation with adult children.Conclusion: Surgeons and nurses perceive involvement of adult in treatment decision making as beneficial. However, family involvement can trigger specific complexities and challenges in treatment decision conversations that call for practical patient and family-centered strategies.
Background: Medical consultations with older patients often include triadic conversations and decision-making processes involving physicians, patients, and family members. The presence of family members may change the communication dynamics and therefore increase the complexity of the consultation and decision-making process. Objective: This study explored associations between physicians' shared decision-making (SDM) behaviour and patients' and family members' participation in the decision-making process. Methods: Using an observational design, we analysed 95 recorded consultations between medical specialists, patients aged ≥65 years, and accompanying family members at a Dutch hospital. The OPTIONMCC was used to assess the physicians' SDM behaviour and patients' and family members' levels of involvement in SDM. Results: We found a strong positive correlation between physicians' behaviour and patients' and family members' participation in SDM (0.68 and 0.64, respectively, p < .01). Family members were more involved in SDM for patients aged 80 and older. Conclusion: While not asserting causation, our study suggests physicians potentially play a facilitating role in shaping the SDM process together with proactive contributions from patients and family members. Innovation: The results offer new insights into triadic SDM and provide suggestions for refining the OPTIONMCC. Further research is recommended into participants' mutual directional influences in triadic SDM.
The aim of this study is to propose a model of the benefits and working mechanisms of family nursing conversations in home healthcare from the perspective of participating patients and their family members. Family nursing conversations in this study are intended to optimise family functioning, improve collaboration between family and professional caregivers and ultimately prevent or reduce overburden of family caregivers. In a qualitative grounded theory design, data were collected in 2017 using intensive interviewing with participants of family nursing conversations in home healthcare. A total of 26 participants (9 patients and 17 family members) from 11 families participated in a family nursing conversation and the study. Seven nurses who received extensive education in family nursing conversations conducted them as part of their daily practice. Interviews occurred 4-6 weeks after the family nursing conversation. The model that was constructed in close collaboration with the families consists of three parts. The first part outlines working mechanisms of the conversation itself according to participants, i.e. structured and open communication about the care situation and the presence of all of the people who are involved. The second part consists of the benefits that participants experienced during and immediately after the conversation - an increased sense of overview and improved contact among the people involved - and the related working mechanisms. The last part consists of benefits that emerged in the weeks after the conversation - reduced caregiver burden and improved quality of care - and the related working mechanisms. Insight into the benefits and working mechanisms of family nursing conversations may assist healthcare professionals in their application of the intervention and provides directions for outcomes and processes to include in future studies.
Everyone has the right to participate in society to the best of their ability. This right also applies to people with a visual impairment, in combination with a severe or profound intellectual and possibly motor disability (VISPIMD). However, due to their limitations, for their participation these people are often highly dependent on those around them, such as family members andhealthcare professionals. They determine how people with VISPIMD participate and to what extent. To optimize this support, they must have a good understanding of what people with disabilities can still do with their remaining vision.It is currently difficult to gain insight into the visual abilities of people with disabilities, especially those with VISPIMD. As a professional said, "Everything we can think of or develop to assess the functional vision of this vulnerable group will help improve our understanding and thus our ability to support them. Now, we are more or less guessing about what they can see.Moreover, what little we know about their vision is hard to communicate to other professionals”. Therefore, there is a need for methods that can provide insight into the functional vision of people with VISPIMD, in order to predict their options in daily life situations. This is crucial knowledge to ensure that these people can participate in society to their fullest extent.What makes it so difficult to get this insight at the moment? Visual impairments can be caused by a range of eye or brain disorders and can manifest in various ways. While we understand fairly well how low vision affects a person's abilities on relatively simple visual tasks, it is much more difficult to predict this in more complex dynamic everyday situations such asfinding your way or moving around during daily activities. This is because, among other things, conventional ophthalmic tests provide little information about what people can do with their remaining vision in everyday life (i.e., their functional vision).An additional problem in assessing vision in people with intellectual disabilities is that many conventional tests are difficult to perform or are too fatiguing, resulting in either no or the wrong information. In addition to their visual impairment, there is also a very serious intellectual disability (possibly combined with a motor impairment), which makes it even more complex to assesstheir functional vision. Due to the interplay between their visual, intellectual, and motor disabilities, it is almost impossible to determine whether persons are unable to perform an activity because they do not see it, do not notice it, do not understand it, cannot communicate about it, or are not able to move their head towards the stimulus due to motor disabilities.Although an expert professional can make a reasonable estimate of the functional possibilities through long-term and careful observation, the time and correct measurement data are usually lacking to find out the required information. So far, it is insufficiently clear what people with VZEVMB provoke to see and what they see exactly.Our goal with this project is to improve the understanding of the visual capabilities of people with VISPIMD. This then makes it possible to also improve the support for participation of the target group. We want to achieve this goal by developing and, in pilot form, testing a new combination of measurement and analysis methods - primarily based on eye movement registration -to determine the functional vision of people with VISPIMD. Our goal is to systematically determine what someone is responding to (“what”), where it may be (“where”), and how much time that response will take (“when”). When developing methods, we take the possibilities and preferences of the person in question as a starting point in relation to the technological possibilities.Because existing technological methods were originally developed for a different purpose, this partly requires adaptation to the possibilities of the target group.The concrete end product of our pilot will be a manual with an overview of available technological methods (as well as the methods themselves) for assessing functional vision, linked to the specific characteristics of the target group in the cognitive, motor area: 'Given that a client has this (estimated) combination of limitations (cognitive, motor and attention, time in whichsomeone can concentrate), the order of assessments is as follows:' followed by a description of the methods. We will also report on our findings in a workshop for professionals, a Dutch-language article and at least two scientific articles. This project is executed in the line: “I am seen; with all my strengths and limitations”. During the project, we closely collaborate with relevant stakeholders, i.e. the professionals with specific expertise working with the target group, family members of the persons with VISPIMD, and persons experiencing a visual impairment (‘experience experts’).
