Crossroads of well-being and compliance: a qualitative cohort study of visitor restriction policy during the COVID-19 pandemic, the Netherlands, May 2020-December 2021.

BACKGROUND: In this qualitative study we observed in-depth the impact of the visiting restriction policy (VRP, i.e. number of visitors allowed at home) on well-being and compliance during the COVID-19 pandemic to regulate infection rates. METHODS: A cohort of 15 interviewees was followed throughout the COVID-19 pandemic in the Netherlands in 12 interview rounds (May 2020-December 2021). Every round semi-structured telephone interviews were conducted by a team of 8 researchers. In total 176 interviews were conducted. RESULTS: This study showed that four categories can be identified when observing the impact of the VRP on well-being and compliance. For Resilient-Followers reasons for compliance were risk perception, following government rules, and for some having a small social circle. Because they accepted the situation, well-being was hardly affected. Resilient-Rulebreakers made their own risk assessment of people they met. Their well-being was hardly affected, because they experienced social rest and interpreted the measure in their own way. Suffering-Followers complied, because of risk perception, following government rules, and working in healthcare. However, the VRP had substantial impact on well-being, because social structures were disrupted. Suffering-Rulebreakers gave their own interpretation to the VRP, trying to find a balance between compliance and well-being. We observed that the categories were quite stable over time. CONCLUSIONS: The VRP appeared to be a measure with substantial impact on well-being for some, mostly because social structures were disrupted. The measure showed fluctuating compliance, in which feasibility and frequent changes in the VRP played a role. Well-being seemed related to the number of visitors that was allowed; a restriction of four visitors was feasible, while one visitor resulted in a negative breaking-point in resilience, which had an impact on compliance, even among the most compliant. Taken together, this study provides valuable insights into the implications of and compliance to a VRP during different phases of the COVID-19 pandemic, which may contribute to policymaking during future pandemics.

Understanding public perceptions toward sustainable healthcare through psychological network analysis of material preference and attitudes toward plastic medical devices.

Recent and potential future health-care users (i.e., the public) are important stakeholders in the transition toward environmentally sustainable healthcare. However, it remains unclear whether, according to the public, there is room for sustainable innovations in materials for plastic medical devices (PMD). This study explores preferences regarding conventional or bio-based PMD, and psychological mechanisms underlying these preferences. We administered two surveys among Dutch adults from a research panel. Results from the first survey (i.e., open-text survey on attitude elements; NStudy1 = 66) served as input for the second survey (i.e., Likert-scale survey on beliefs, emotions, perceived control, social norms, trust, related to current and bio-based PMD, and health and age; NStudy2 = 1001; Mage = 47.35; 54.4% female). The second survey was completed by 501 participants who, in the last two years, received care in which PMD were used, and 500 participants who did not. Cross-sectional psychological networks were estimated with data from the second study using the EBICglasso method. Results showed that participants preferred bio-based over conventional PMD, and this applied regardless of whether devices are used inside or outside of the body. Results also showed emotions play an important role, with emotions regarding bio-based PMD being strongly related to preference. Furthermore, comparing recent and potential future receivers of PMD revealed differences in preference but comparable relations between preference and other psychological variables. This study shows that receivers' perspectives should not be seen as potential barriers, but as additional motivation for transitioning toward sustainable healthcare. Recommendations for implementation are discussed.

General Mental Health, Loneliness, and Life Satisfaction in the Context of COVID-19 Policies: A 2-Year Cohort Study in the Netherlands, April 2020-January 2022.

OBJECTIVE: Although the COVID-19 pandemic has affected mental health, understanding who has been affected most and why is incomplete. We sought to understand changes in mental health in the context of transmission numbers and pandemic (social) restrictions and whether changes in mental health varied among population groups. METHODS: We analyzed data from 92 062 people (aged ≥16 years and able to read Dutch) who participated in the Corona Behavioral Unit cohort study at the National Institute for Public Health and the Environment, the Netherlands, from April 17, 2020, through January 25, 2022. Participants self-reported mental well-being through multiple rounds of surveys. We used a multivariable linear mixed-effects model to analyze loneliness, general mental health, and life satisfaction. RESULTS: As strictness of pandemic prevention measures and social restrictions increased, people's feelings of loneliness increased and mental health and life satisfaction decreased. As restrictions were relaxed, loneliness decreased and general mental health improved. Younger people (aged 16-24 y) versus older people (aged ≥40 y), people with low (vs high) education levels, and people living alone (vs living together) were more likely to have negative well-being outcomes. We observed that trajectories over time differed considerably only by age, with participants aged 16-24 years affected substantially more than participants aged ≥40 years by pandemic social restrictions. These patterns were consistent across multiple waves of SARS-CoV-2 infection. CONCLUSIONS: Our findings suggest that the social restrictions imposed by the Dutch government during the study period were associated with reduced mental well-being, especially among younger people. However, people appeared resilient as they recovered during periods when restrictions were relaxed. Monitoring and supporting well-being, in particular to reduce loneliness, may help younger people during periods of intense social restrictions.

Cohort profile: The Corona Behavioral Unit cohort, a longitudinal mixed-methods study on COVID-19-related behavior, well-being and policy support in the Netherlands.

This 'cohort profile' aims to provide a description of the study design, methodology, and baseline characteristics of the participants in the Corona Behavioral Unit cohort. This cohort was established in response to the COVID-19 pandemic by the Dutch National Institute for Public Health and the Environment (RIVM) and the regional public health services. The aim was to investigate adherence of and support for COVID-19 prevention measures, psychosocial determinants of COVID-19 behaviors, well-being, COVID-19 vaccination, and media use. The cohort also examined specific motivations and beliefs, such as for vaccination, which were collected through either closed-ended items or open text responses. In April 2020, 89,943 participants aged 16 years and older were recruited from existing nation-wide panels. Between May 2020 and September 2022, 99,676 additional participants were recruited through online social media platforms and mailing lists of higher education organizations. Participants who consented were initially invited every three weeks (5 rounds), then every six weeks (13 rounds), and since the summer of 2022 every 12 weeks (3 rounds). To date, 66% of participants were female, 30% were 39 years and younger, and 54% completed two or more questionnaires, with an average of 9.2 (SD = 5.7) questionnaires. The Corona Behavioral Unit COVID-19 cohort has published detailed insights into longitudinal patterns of COVID-19 related behaviors, support of COVID-19 preventive measures, as well as peoples' mental wellbeing in relation to the stringency of these measures. The results have informed COVID-19 policy making and pandemic communication in the Netherlands throughout the COVID-19 pandemic. The cohort data will continuously be used to examine COVID-19 related outcomes for scientific analyses, as well as to inform future pandemic preparedness plans.

Understanding change in COVID-19 vaccination intention with network analysis of longitudinal data from Dutch adults.

Prior research into the relationship between attitudes and vaccination intention is predominantly cross-sectional and therefore does not provide insight into directions of relations. During the COVID-19 vaccines development and enrollment phase, we studied the temporal dynamics of COVID-19 vaccination intention in relation to attitudes toward COVID-19 vaccines and the pandemic, vaccination in general, social norms and trust. The data are derived from a longitudinal survey study with Dutch participants from a research panel (N = 744; six measurements between December 2020 and May 2021; age 18-84 years [M = 53.32]) and analyzed with vector-autoregression network analyses. While cross-sectional results indicated that vaccination intention was relatively strongly related to attitudes toward the vaccines, results from temporal analyses showed that vaccination intention mainly predicted other vaccination-related variables and to a lesser extent was predicted by variables. We found a weak predictive effect from social norm to vaccination intention that was not robust. This study underlines the challenge of stimulating uptake of new vaccines developed during pandemics, and the importance of examining directions of effects in research into vaccination intention.

A Psychological Network Approach to Attitudes and Preventive Behaviors During Pandemics: A COVID-19 Study in the United Kingdom and the Netherlands.

Preventive behaviors are crucial to prevent the spread of the coronavirus causing COVID-19. We adopted a complex psychological systems approach to obtain a descriptive account of the network of attitudes and behaviors related to COVID-19. A survey study (N = 1,022) was conducted with subsamples from the United Kingdom (n = 502) and the Netherlands (n = 520). The results highlight the importance of people's support for, and perceived efficacy of, the measures and preventive behaviors. This also applies to the perceived norm of family and friends adopting these behaviors. The networks in both countries were largely similar but also showed notable differences. The interplay of psychological factors in the networks is also highlighted, resulting in our appeal to policy makers to take complexity and mutual dependence of psychological factors into account. Future research should study the effects of interventions aimed at these factors, including effects on the network, to make causal inferences.

Understanding a national increase in COVID-19 vaccination intention, the Netherlands, November 2020-March 2021.

The intention to get the COVID-19 vaccine increased from 48% (November 2020) to 75% (March 2021) as national campaigning in the Netherlands commenced. Using a mixed method approach we identified six vaccination beliefs and two contextual factors informing this increase. Analysis of a national survey confirmed that shifting intentions were a function of shifting beliefs: people with stronger intention to vaccinate were most motivated by protecting others and reopening society; those reluctant were most concerned about side effects.

Do not forget the professional--the value of the FIRST model for guiding the structural involvement of patients in rheumatology research.

BACKGROUND: The FIRST model describes five practical components that enable equal collaboration between patients and professionals in clinical rheumatology research: Facilitate, identify, respect, support and training. OBJECTIVE: To assess the value of this model as a framework for setting up and guiding the structural involvement of people with arthritis in health research. METHOD: The FIRST model was used as a framework during the guidance of a network of patient research partners and clinical rheumatology departments in the Netherlands. A 'monitoring and evaluation' approach was used to study the network over a period of 2 years. Data were collected using mixed methods and subjected to a directed content analysis. The FIRST components structured the data analysis. During monitoring meetings, refined and additional descriptors for each component were formulated and added if new items were found. RESULTS: The FIRST model helps to guide and foster structural partnerships between patients and professionals in health research projects. However, it should be broadened to emphasize the pivotal role of the principal investigator regarding the facilitation and support of patient research partners, to recognize the requirements of professionals for training and coaching and to capture the dynamics of collaboration, mutual learning processes and continuous reflection. CONCLUSION: FIRST is a good model to implement sustainable relationships between patients and researchers. It will benefit from further refinement by acknowledging the dynamics of collaboration and including the concept of reflection and relational empowerment. The reciprocal character of the five components, including training and support of researchers, should be incorporated.

Patient involvement in research programming and implementation: A responsive evaluation of the Dialogue Model for research agenda setting.

BACKGROUND: The Dialogue Model for research agenda-setting, involving multiple stakeholders including patients, was developed and validated in the Netherlands. However, there is little insight into whether and how patient involvement is sustained during the programming and implementation of research agendas. AIM: To understand how the Dialogue Model can be optimised by focusing on programming and implementation, in order to stimulate the inclusion of (the perspectives of) patients in research. METHODS: A responsive evaluation of the programming and implementation phases of nine agenda-setting projects that had used the Dialogue Model for agenda-setting was conducted. Fifty-four semi-structured interviews were held with different stakeholders (patients, researchers, funding agencies). Three focus groups with patients, funding agencies and researchers (16 participants) were organized to validate the findings. RESULTS: Patient involvement in programming and implementation of the research agendas was limited. This was partly related to poor programming and implementation, partly to pitfalls in earlier phases of the agenda-setting. Optimization of the Dialogue Model is possible by attending to the nature of the agenda and its intended use in earlier phases. Attention should also be given to the ambassadors and intended users of agenda topics. Support is needed during programming and implementation to organize patient involvement and adapt organizational structures like review procedures. In all phases the attitude to patient involvement, stakeholder participation, especially of researchers, and formal and informal relationships between parties need to be addressed to build a strong relationship with a shared goal. CONCLUSION: Patient involvement in agenda-setting is not automatically followed by patient involvement in programming and implementation. More attention should be paid, in earlier stages, to the attitude and engagement of researchers and funding agencies.

The PROactive innovative conceptual framework on physical activity.

Although physical activity is considered an important therapeutic target in chronic obstructive pulmonary disease (COPD), what "physical activity" means to COPD patients and how their perspective is best measured is poorly understood. We designed a conceptual framework, guiding the development and content validation of two patient reported outcome (PRO) instruments on physical activity (PROactive PRO instruments). 116 patients from four European countries with diverse demographics and COPD phenotypes participated in three consecutive qualitative studies (63% male, age mean±sd 66±9 years, 35% Global Initiative for Chronic Obstructive Lung Disease stage III-IV). 23 interviews and eight focus groups (n = 54) identified the main themes and candidate items of the framework. 39 cognitive debriefings allowed the clarity of the items and instructions to be optimised. Three themes emerged, i.e. impact of COPD on amount of physical activity, symptoms experienced during physical activity, and adaptations made to facilitate physical activity. The themes were similar irrespective of country, demographic or disease characteristics. Iterative rounds of appraisal and refinement of candidate items resulted in 30 items with a daily recall period and 34 items with a 7-day recall period. For the first time, our approach provides comprehensive insight on physical activity from the COPD patients' perspective. The PROactive PRO instruments' content validity represents the pivotal basis for empirically based item reduction and validation.

Patient involvement in a scientific advisory process: setting the research agenda for medical products.

Patient involvement in scientific advisory processes could lead to more societally relevant advice. This article describes a case study wherein the Health Council of the Netherlands involved patient groups in an advisory process with a predefined focus: setting a research agenda for medical products development. A four-phase approach was developed to stimulate needs-articulation concerning future medical products for a broad range of patient groups covering 15 disease domains. 119 (expert) patients and 92 non-patient representatives were consulted using interviews and focus groups. In a facilitated way, patients appeared capable and willing to provide input useful for an advisory process. A broad range of medical products was defined serving different purposes. This study showed two dilemmas: first, finding a balance between a predefined focus and being sufficiently broad to enable patients and patient representatives to contribute, and second, finding a balance between relevance for many patients groups and saturation of data for a lower number of patient groups. By taking the context of patients' daily life as starting point patient groups provided new insights. The predefined focus was sometimes perceived as constraining. The GR considered the articulated needs constructive and incorporated patients' input in their advice to the Minister of Health.

Patient-expert partnerships in research: how to stimulate inclusion of patient perspectives.

OBJECTIVE To gain more insight into exclusion mechanisms and inclusion strategies in patient-expert partnerships. BACKGROUND Patient participation in health research, on the level of 'partnerships with experts' is a growing phenomenon. However, little research is conducted whether exclusion mechanisms take place and to what extent patients' perspectives are included in the final outcomes of these partnerships. Case study A dialogue meeting attended by experts, patients and patient representatives to develop a joint research agenda. Different inclusion strategies were applied during the dialogue meeting to avoid possible exclusion. METHOD Data were collected by the means of audio and video recordings, observations, document analysis and evaluative interviews. The data are clustered using a framework that divides exclusion mechanisms in three categories: circumstances, behaviour and verbal communication. The data are analysed focusing on the experiences of participants, observation of occurrence of exclusion and difference between input and outcome of the dialogue meeting. RESULTS The circumstances of the dialogue and the behaviour of the participants were experienced as mainly inclusive. Some exclusion was observed particularly with respect to verbal communication. The input of the patients was less visible in the outcome of the dialogue meeting compared to the input of the experts. CONCLUSION This case study reveals that exclusion of patients' perspective occurred during a dialogue meeting with experts, despite the fact that inclusion strategies were used and patients experienced the dialogue meeting as inclusive. To realize a more effective patient-expert partnership, more attention should be paid to the application of some additional inclusion strategies.