Information and communication priorities of patients and healthcare professionals in shared decision making regarding adjuvant systemic breast cancer treatment: A survey study.

PURPOSE: To assess information and communication priorities of patients and healthcare professionals in Shared Decision Making about adjuvant systemic treatment of primary breast cancer and identify key decision-relevant information accordingly. METHODS: Patients (N = 122) and professionals working with breast cancer patients (N = 118), of whom 38 were nurse practitioners and 32 nurses, were recruited using convenience sampling, and surveyed about information/communication aspects key to decision-making, using ranking assignments. We further posed a simple open question, questions about receiving population-based statistics versus personalized statistics concerning treatment outcomes, and their attitude and experience concerning Shared Decision Making. Data were analyzed using descriptive analysis and a qualitative analysis. RESULTS: Both patients and professionals prioritized information about treatment outcomes (i.e., survival, recurrence) as key decision-relevant information for patients. Patients prioritized information about relatively severe treatment side-effects and late effects (e.g., blood clot, stroke), whilst professionals prioritized information about effects that occur relatively often (e.g., hair loss, fatigue). Patients specifically wanted to know if the benefit of treatment is worth the negative impact. Both groups prioritized personalized statistics over population-based statistics. CONCLUSIONS: Some differences between patients and professionals were found in information and communication priorities, specifically related to the different side-effects. It seems worthwhile to precisely address these side-effects in Shared Decision Making concerning adjuvant systemic treatment. Furthermore, it seems important to deliberate together on the question if expected benefit of treatment is worth the potential negative impact for the individual patient.

Communicating the results of risk-based breast cancer screening through visualizations of risk: a participatory design approach.

BACKGROUND: Risk-based breast cancer (BC) screening raises new questions regarding information provision and risk communication. This study aimed to: 1) investigate women's beliefs and knowledge (i.e., mental models) regarding BC risk and (risk-based) BC screening in view of implications for information development; 2) develop novel informational materials to communicate the screening result in risk-based BC screening, including risk visualizations of both quantitative and qualitative information, from a Human-Centered Design perspective. METHODS: Phase 1: Interviews were conducted (n = 15, 40-50 years, 5 lower health literate) on women's beliefs about BC risk and (risk-based) BC screening. Phase 2: In three participatory design sessions, women (n = 4-6 across sessions, 40-50 years, 2-3 lower health literate) made assignments and created and evaluated visualizations of risk information central to the screening result. Prototypes were evaluated in two additional sessions (n = 2, 54-62 years, 0-1 lower health literate). Phase 3: Experts (n = 5) and women (n = 9, 40-74 years) evaluated the resulting materials. Two other experts were consulted throughout the development process to ensure that the content of the information materials was accurate. Interviews were transcribed literally and analysed using qualitative thematic analysis, focusing on implications for information development. Notes, assignments and materials from the participatory design sessions were summarized and main themes were identified. RESULTS: Women in both interviews and design sessions were positive about risk-based BC screening, especially because personal risk factors would be taken into account. However, they emphasized that the rationale of risk-based screening and classification into a risk category should be clearly stated and visualized, especially for higher- and lower-risk categories (which may cause anxiety or feelings of unfairness due to a lower screening frequency). Women wanted to know their personal risk, preferably visualized in an icon array, and wanted advice on risk reduction and breast self-examination. However, most risk factors were considered modifiable by women, and the risk factor breast density was not known, implying that information should emphasize that BC risk depends on multiple factors, including breast density. CONCLUSIONS: The information materials, including risk visualizations of both quantitative and qualitative information, developed from a Human-Centered Design perspective and a mental model approach, were positively evaluated by the target group.

Severe mental illness and palliative care: patient semistructured interviews.

OBJECTIVES: To explore perceptions, experiences and expectations with respect to palliative care of patients with severe mental illness (SMI) and an incurable, life-limiting chronic illness. METHODS: Face-to-face semistructured interviews were conducted with 12 patients (10 of them living in a mental healthcare institution) with severe mental and physical health issues in the Netherlands. A semistructured interview guide was used to elicit perceptions of, experiences with and expectations regarding palliative care. Data were analysed using inductive content analysis. RESULTS: Analysis of the data revealed eight categories: perceptions on health and health issues, coping with illness and symptoms, experiences with and wishes for current healthcare, contact with relatives and coresidents, experiences with end of life of relatives and coresidents, willingness to discuss end of life and death, wishes and expectations regarding one's own end of life and practical aspects relating to matters after death. These categories were clustered into two separate themes: current situation and anticipation of end of life. Interviewees with SMI appeared not accustomed to communicate about end-of-life issues, death and dying due to their life-threatening illness. They tended to discuss only their current situation and, after further exploration of the researcher, the terminal phase of life. They seemed not engaged in their future palliative care planning. CONCLUSIONS: Findings of this study highlight inadequacies in advance care planning for patients with SMI. Results suggest using values, current and near wishes, and needs as a starting point for establishing a gradual discussion concerning goals and preferences for future medical and mental treatment and care.

Informal antidepressant strategies for nursing home residents: two group concept mapping studies.

OBJECTIVES: To identify and structure potential informal antidepressant strategies that can be used in daily practice for nursing home residents alongside formal treatments. METHODS: In a first Group Concept Mapping study, residents, relatives, and professional caregivers (N = 124) brainstormed on strategies residents could use to prevent or alleviate depression. In a second study, the same participants (N = 110) reported strategies for use by others. Furthermore, participants rated the expected effectiveness and feasibility of the suggested strategies. Simultaneously, all strategies were sorted by experts and clustered using multidimensional scaling and hierarchical cluster analysis. RESULTS: Six clusters emerged for strategies by residents themselves and five clusters for strategies by others. For residents' strategies, the clusters Being socially connected and Participating in activities were perceived as most effective, as was the cluster Offering personal attention for strategies by others. Participants perceived Creating a healthy living environment as the most feasible cluster executed by residents. Within strategies by others, the clusters Offering personal attention, Using positive treatment/approach, and Using or adapting the physical environment were perceived as the most feasible. CONCLUSION: The results indicated the importance of social connectedness, a personalized and positive approach by significant others, and tailored activity programs. The results also suggest that adaptations to the physical environment within nursing homes may be an easy applicable strategy to prevent or alleviate depression in residents. Although more research is needed, these findings may guide daily practice and the development of interventions that include informal strategies.Supplemental data for this article can be accessed online at https://doi.org/10.1080/13607863.2022.2057427 .

[Remote work and the use of online communication in nursing homes during COVID-19-measures]. / Werken op afstand en gebruik van onlinecommunicatie in verpleeghuizen tijdens COVID-19-maatregelen.

The measures taken in Dutch nursing homes during the first wave of the COVID-19 pandemic resulted in both an increase and a decrease of challenging behavior in nursing home residents. Staff undertook various initiatives to reduce the negative effects. For example, video calling between residents and their relatives was facilitated. In addition, initiatives in digital care (telehealth) were deployed. The aim of this study was to explore nursing home practitioners' experiences with online communication between residents and relatives, working remotely in general and the remote treatment of challenging behavior in particular. One hundred and seventy-five nursing home professionals (psychologists, elderly care specialists, nursing specialists, daytime activities coordinators) completed an online questionnaire at the end of 2020/start of 2021. Open and closed questions showed that face-to-face contacts are preferred over online communication. Online communication was mainly seen as a (meaningful) addition. Although professionals wanted to continue some of their work remotely, and found this efficient and workload-reducing, they felt that this could impair their job satisfaction and the quality of care. For remote work and remote treatment, each task needs to be evaluated on whether it can be performed properly and whether that results in good care. More research into online communication, remote working and digital care in nursing homes is needed.

Cocreation with Dutch patients of decision-relevant information to support shared decision-making about adjuvant treatment in breast cancer care.

BACKGROUND: To support patients in shared decision-making about treatment options, patient decision aids (PtDAs) usually provide benefit/harm information and value clarification methods (VCMs). Recently, personalized risk information from prediction models is also being integrated into PtDAs. This study aimed to design decision-relevant information (i.e., personalized survival rates, harm information and VCMs) about adjuvant breast cancer treatment in cocreation with patients, in a way that suits their needs and is easily understandable. METHODS: Three cocreation sessions with breast cancer patients (N = 7-10; of whom N = 5 low health literate) were performed. Participants completed creative assignments and evaluated prototypes of benefit/harm information and VCMs. Prototypes were further explored through user testing with patients (N = 10) and healthcare providers (N = 10). The researchers interpreted the collected data, for example, creative and homework assignments, and participants' presentations, to identify key themes. User tests were transcribed and analysed using ATLAS.ti to assess the understanding of the prototypes. RESULTS: Important information needs were: (a) need for overview/structure of information directly after diagnosis and; (b) need for transparent benefit/harm information for all treatment options, including detailed harm information. Regarding VCMs, patients stressed the importance of a summary/conclusion. A bar graph seemed the most appropriate way of displaying personalized survival rates; the impact of most other formats was perceived as too distressful. The concept of 'personalization' was not understood by multiple patients. CONCLUSIONS: A PtDA about adjuvant breast cancer treatment should provide patients with an overview of the steps and treatment options, with layers for detailed information. Transparent information about the likelihood of benefits and harm should be provided. Given the current lack of information on the likelihood of side effects/late effects, efforts should be made to collect and share these data with patients. Further quantitative studies are needed to validate the results and to investigate how the concept of 'personalization' can be communicated. PATIENT OR PUBLIC CONTRIBUTION: Ten breast cancer patients participated in three cocreation sessions to develop decision-relevant information. Subsequent user testing included 10 patients. The Dutch Breast Cancer Association (BVN) was involved as an advisor in the general study design.

Message Frame-Tailoring in Digital Health Communication: Intervention Redesign and Usability Testing.

BACKGROUND: Message frame-tailoring based on the need for autonomy is a promising strategy to improve the effectiveness of digital health communication interventions. An example of a digital health communication intervention is Personal Advice in Stopping smoking (PAS), a web-based content-tailored smoking cessation program. PAS was effective in improving cessation success rates, but its effect sizes were small and disappeared after 6 months. Therefore, investigating whether message frame-tailoring based on the individual's need for autonomy might improve effect rates is worthwhile. However, to our knowledge, this has not been studied previously. OBJECTIVE: To investigate whether adding message frame-tailoring based on the need for autonomy increases the effectiveness of content-tailored interventions, the PAS program was redesigned to incorporate message frame-tailoring also. This paper described the process of redesigning the PAS program to include message frame-tailoring, providing smokers with autonomy-supportive or controlling message frames-depending on their individual need for autonomy. Therefore, we aimed to extend framing theory, tailoring theory, and self-determination theory. METHODS: Extension of the framing theory, tailoring theory, and self-determination theory by redesigning the PAS program to include message frame-tailoring was conducted in close collaboration with scientific and nonscientific smoking cessation experts (n=10), smokers (n=816), and communication science students (n=19). Various methods were used to redesign the PAS program to include message frame-tailoring with optimal usability: usability testing, think-aloud methodology, heuristic evaluations, and a web-based experiment. RESULTS: The most autonomy-supportive and controlling message frames were identified, the cutoff point for the need for autonomy to distinguish between people with high and those with low need for autonomy was determined, and the usability was optimized. CONCLUSIONS: This resulted in a redesigned digital health communication intervention that included message frame-tailoring and had optimal usability. A detailed description of the redesigning process of the PAS program is provided. TRIAL REGISTRATION: Netherlands Trial Register NL6512 (NRT6700); https://www.trialregister.nl/trial/6512.

Stimuli changes and challenging behavior in nursing homes during the COVID-19 pandemic.

BACKGROUND: COVID-19 restrictions in nursing homes resulted in a reduction in stimuli for residents. This study aimed to explore observed effects of changes in stimuli, both targeted (e.g., planned recreational activities) and untargeted (e.g., spontaneous noise), on challenging behavior in nursing home residents during COVID-19 anti-pandemic measures. METHODS: In an online survey, nursing home healthcare professionals in the Netherlands provided their perspectives on the effects of the reduction in untargeted stimuli on residents with mild, advanced, or no dementia, and on different types of challenging behavior (i.e., psychotic, depressed, anxious, agitated, or apathetic behavior). Additionally, we asked participants' opinions about strategies for limiting untargeted stimuli and for adjusting targeted stimuli for optimal management of challenging behaviors. RESULTS: In total, 199 professionals completed the survey. Residents with advanced dementia and those with psychotic and agitated behavior seemed to benefit from the reductions in stimuli not specifically targeted at the resident. In contrast, residents without dementia and those with depressive and apathetic behavior seemed to be negatively affected by reductions in untargeted stimuli. Participants would like to continue reducing untargeted stimuli in the future (e.g., limiting the use of corridors adjacent to residents' rooms) and to adapt existing or introduce new initiatives involving targeted stimuli (e.g., small-scale, individually tailored activities). Responses to open-ended questions revealed additional initiatives that could be useful in nursing home care. CONCLUSIONS: This study provided lessons to learn from the COVID-19 measures in nursing homes. While many residents may have been negatively affected by the restrictions imposed during the pandemic, specific resident groups may have benefitted from the reduction in untargeted stimuli and from the adjustments made to daily activities. Various strategies and initiatives used in nursing homes during the pandemic seem promising for meeting individual needs in managing challenging behavior. These findings suggest that certain stimuli may affect specific resident groups differently. This underlines the importance of finding the right balance between stimuli and tranquility, tailored to the needs of individual residents. It is important to consider the stimuli present in nursing homes, whether targeted or untargeted, when analyzing and treating challenging behavior.

The association between specific activity components and depression in nursing home residents: the importance of the social component.

OBJECTIVES: To longitudinally explore the association between activities and depressive symptoms of nursing home (NH) residents, taking into account that each activity may contain multiple components (physical, creative, social, cognitive, and musical). METHOD: Study with a baseline and two follow-ups (four and eight months). Participants were forty physically frail residents of four NHs in the Netherlands. Residents were interviewed about depressive symptoms (CES-D) and activities they conducted over the previous week. Three researchers independently rank ordered each activity on the degree to which it could be regarded as having physical, creative, social, cognitive, and musical components. Accounting for the rank score and the time the resident spent on that activity, residents were categorized per activity component into four levels: absent, low, medium, and high. RESULTS: Mixed models predicting depressive symptoms from individual activity components showed significant associations for the social and cognitive components. Compared with the lowest activity level, the analyses showed fewer depressive symptoms for all higher levels of the social and cognitive components. However, a mixed model adjusted for all activity components showed no unique effect of the cognitive component or other components, while the effects of the social component remained significant. The analyses did not show differences between the time points. CONCLUSION: The results suggest that the effects of activities on depressive symptoms might be mainly explained by their social component. It is, thus, important to always stimulate social involvement and interaction when developing and applying depression interventions. However, intervention research is needed to confirm these findings.

Challenging behavior of nursing home residents during COVID-19 measures in the Netherlands.

OBJECTIVES: From the perspective of the nursing home (NH) practitioners, to gain understanding of (1) whether challenging behavior in NH residents changed during the COVID-19 measures, (2) whether the practitioners' involvement in the treatment of challenging behavior changed, (3) what can be learned from the experience of NH staff. METHODS: A mixed methods study with a survey in 323 NH practitioners (psychologists, elderly care physicians, nurse practitioners) in the Netherlands, and in-depth interviews in 16 NH practitioners. Nonparametric analyses were used to compare estimated proportions of residents with increased and with decreased challenging behavior. Content analyses were conducted for open-ended questions and in-depth interviews. RESULTS: Participants reported changes in challenging behavior with slightly higher proportions for increased (Q1/Mdn/Q3: 12.5%, 21.7%, 30.8%) than for decreased (8.7%, 14.8%, 27.8%, Z = -2.35, p = .019) challenging behavior. Half of the participants reported that their work load increased and work satisfaction worsened during the measures. Different strategies were described to respond to the effects of COVID-19 measures, such as video calls, providing special areas for residents to meet their loved ones, adjusting activities, and reducing the exposure to negative news. CONCLUSIONS: Because COVID-19 measures resulted in both increased and decreased challenging behavior in NH residents, it is important to monitor for their potential long lasting effects. Increased work load and worsened work satisfaction of the NH staff, together with the changes in type of challenging behavior, indicate that the harmful effects of the anti-pandemic measures should be taken seriously.