"A perfect storm": Autistic experiences of menopause and midlife.

LAY ABSTRACT: Previous studies report that menopause can be a very difficult transition for some autistic people. This study focuses on how autistic people experience menopause and what support and information might help them. Autistic Community Research Associates played an important role in the research and co-authored this article. We held four focus groups and eight interviews online with 24 autistic participants who lived in either Canada (n = 13) or the United Kingdom (n = 11). We analysed participant conversations using a method called reflexive thematic analysis. Participants described many intense challenges during menopause. Four themes and eight subthemes were identified across participant groups: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). The experiences of our participants may not be the same as other autistic people, and the study could have been more inclusive of diverse autistic groups. However, hearing about the experiences of others may provide reassurance to autistic people who struggle with menopause and let them know they are not alone.

Reframing the wicked problem of pre-harvest burning: A case study of Thailand's sugarcane.

Pre-harvest sugarcane burning persists in many countries though there are policies prohibiting the practice. As problems related to sugarcane harvesting are complex, a thorough understanding of the problems for policy formulation is required. The objective of this study was to reanalyze or reframe problems of sugarcane harvesting and pre-harvest sugarcane burning. Concepts of wicked problems, practical reasoning and policy reframing were applied. The study used a participatory modeling approach to illustrate the case of Thailand. Wickedness was shown by complexity and uncertainties of factors intertwining with values related to adoption of harvesting methods; green mechanical, green manual and burnt manual. As timeliness of harvest was the top priority, the burnt method was considered more efficient. It was easier, faster, cheaper and more suitable under unfavorable circumstances for the green methods. The policy to reduce burnt-harvested sugarcane was not so effective and also led to the undesired 'green but unclean' method. To frame harvesting problems based on emissions of fine particulates (PM2.5) from sugarcane burning was not a good choice. Incomplete problem sense-making and poor problem frame were indicated. Most farmers were unable to associate sugarcane burning with environmental problems of PM2.5 (and also global warming/climate change) and livelihood impacts. Nevertheless, a larger concern over climate variations was perceived by a majority of farmers. Farmers who adapted relied primarily on green harvesting and the use of residues as trash blankets. Through policy reframing, inefficient green harvesting was seen as a better frame. The new frame enabled farmers linking agricultural practices to sustainability of environment, productivity and livelihoods in the context of climate change. Using participatory modeling for reframing policy problems in general and wicked problems in particular was shown to be powerful and contributing to originality.

A Smartphone App to Support Self-Management for People Living With Sjögren's Syndrome: Qualitative Co-Design Workshops.

BACKGROUND: Sjögren's syndrome (SS) is the second most common autoimmune rheumatic disease, and the range of symptoms includes fatigue, dryness, sleep disturbances, and pain. Smartphone apps may help deliver a variety of cognitive and behavioral techniques to support self-management in SS. However, app-based interventions must be carefully designed to promote engagement and motivate behavior change. OBJECTIVE: We aimed to explore self-management approaches and challenges experienced by people living with SS and produce a corresponding set of design recommendations that inform the design of an engaging, motivating, and evidence-based self-management app for those living with SS. METHODS: We conducted a series of 8 co-design workshops and an additional 3 interviews with participants who were unable to attend a workshop. These were audio recorded, transcribed, and initially thematically analyzed using an inductive approach. Then, the themes were mapped to the Self-Determination Theory domains of competency, autonomy, and relatedness. RESULTS: Participants experienced a considerable demand in the daily work required in self-managing their SS. The condition demanded unrelenting, fluctuating, and unpredictable mental, physical, and social efforts. Participants used a wide variety of techniques to self-manage their symptoms; however, their sense of competency was undermined by the complexity and interconnected nature of their symptoms and affected by interactions with others. The daily contexts in which this labor was occurring revealed ample opportunities to use digital health aids. The lived experience of participants showed that the constructs of competency, autonomy, and relatedness existed in a complex equilibrium with each other. Sometimes, they were disrupted by tensions, whereas on other occasions, they worked together harmoniously. CONCLUSIONS: An SS self-management app needs to recognize the complexity and overlap of symptoms and the complexities of managing the condition in daily life. Identifying techniques that target several symptoms simultaneously may prevent users from becoming overwhelmed. Including techniques that support assertiveness and communication with others about the condition, its symptoms, and users' limitations may support users in their interactions with others and improve engagement in symptom management strategies. For digital health aids (such as self-management apps) to provide meaningful support, they should be designed according to human needs such as competence, autonomy, and relatedness. However, the complexities among the 3 Self-Determination Theory constructs should be carefully considered, as they present both design difficulties and opportunities.

Case Characterization and Perceptions of Athletic Trainers Regarding Medical Disqualification Following Concussion.

CONTEXT: Medical disqualification (MDQ) following concussion is a challenging decision clinicians may encounter with little evidence-based guidance. OBJECTIVE: We aimed to 1) describe the MDQ following concussion cases athletic trainers (ATs) have been involved in, 2) describe beliefs about MDQ following concussion, and 3) explore factors that ATs believed should be involved in the MDQ following concussion process. DESIGN: Mixed methods. SETTING: Online cross-sectional survey with follow-up semi-structured interviews. PARTICIPANTS: ATs (n=502) employed at the collegiate setting completed a survey (completion rate=82.3%, n=413/502; male=175, 34.9%; female=235, 46.8%, prefer not to answer=4, 0.8%; no response=88, 17.5%; age=35.3±10.8 years). Twenty participants were also interviewed (males=13, 65.0%; females=7, 35.0%; average age=40.7±11.0years). DATA COLLECTION AND ANALYSIS: Participants completed a cross-sectional survey comprised of three sections of MDQ experience and specific case information, MDQ beliefs, and demographic items. We also interviewed participants that completed the survey and indicated involvement in at least one MDQ following concussion case. We addressed aims 1 and 2 using descriptive statistics and aim 3 with a five-cycle content analysis. RESULTS: Nearly half of respondents had been involved in an MDQ case following concussion (49.0% n=246; not involved=51.0%, n=256). ATs who had been involved in at least one MDQ case had involvement in an average of 2.3±1.9 cases (n=241). Participants often described many factors they believed should influence the MDQ decision including sport type, concussion history and recovery, health-related quality of life, and academic performance. CONCLUSIONS: Our findings highlight that nearly half of participants were involved in an MDQ case following concussion and navigated this process without guidelines. Given this, multiple factors were considered to evaluate the patient's well-being holistically. The number of ATs involved in MDQ cases following concussion and factors that guided this process warrant further research to develop evidence-based recommendations that assist clinicians in these difficult decisions.

Promoting youth engagement in agriculture through land titling programs: Evidence from Tanzania.

In many African countries, land access and tenure insecurity pose significant challenges to agriculture, in particular for the youth. As the farming population ages, young people are expected to take over, but they don't often show much interest in farming, which could harm the future of agriculture in Africa, where the population is the youngest. Land reforms and titling programs are suggested as amongst strategies to make agriculture more attractive to investors and promote youth involvement. As a result, majority African countries undertook reforms such as land titling, ownership mapping and market facilitation as policy prescriptions for promoting youth involvement in agriculture. Nonetheless, the impact of these programs is not well documented in the body of literature thus constraining policy decisions. This study examines the impact of land titling on youth participation in agriculture in Tanzania, using 2020/2021's wave of Tanzania national panel survey data with a sample size of 2725 youth households from 419 enumeration areas. The study finds that land titling is a critical factor in promoting youth participation in agriculture in Tanzania, with young people who have titled land tending to allocate more resources (time) to farming activities. The study also identified farm size, educational level, and land dispute experience as significant factors influencing youth participation in agriculture. Based on these findings, the study recommends interventions to promote youth participation in agriculture in Tanzania, including investing in land titling programs that specifically target young people and promoting educational programs that equip young people with foundational skills. The study also highlights the need for tailored interventions that address the specific needs of different groups of young people. Overall, the study underlines the importance of promoting youth participation in agriculture in Tanzania and by extension to other African countries to contribute to food security and rural development.

[Lights and shadows in the implementation of community action for health]. / Luces y sombras en la implementación de la acción comunitaria para la salud.

OBJECTIVE: To explore the experiences of individuals who develop projects and interventions where community participation-action constitutes a strategic tool for reducing health inequalities. METHOD: Qualitative study based on semi-structured, in-depth online interviews with individuals considered experts in the development of health promotion strategies involving community participation. A total of 12 individuals from the healthcare, social healthcare, academic, and associative backgrounds were selected. The texts were analyzed following the thematic content analysis approach. RESULTS: The prominent strength of the processes involving the interviewed individuals is their participatory approach. However, there is no genuine commitment to promoting community participation from primary healthcare, and precarity has been identified as a significant weakness in the development of participatory health promotion projects. The sustainability of participatory processes relies on the transfer of knowledge to the community and their empowerment. CONCLUSIONS: Participatory processes have demonstrated their ability to reposition the community as an essential part of the healthcare system. It would be interesting to use a measurement tool for participation in all community health actions, both to guide their design and planning and to assess the depth of participation and its impact on the process. Enhancing community action expectations for health in the near future involves promoting a community-oriented approach in primary care and intersectoral collaboration, which requires a significant institutional and policy commitment.

Social participation in Australian residential aged care: A human rights perspective.

The Royal Commission into Aged Care Quality and Safety emphasised the critical need for a human rights-based approach to protect the rights of older people in the Australian aged care context, including 'the right to social participation'. This topic is important because of the widespread social isolation and loneliness in Australian residential aged care. This article demonstrates how a human rights-based framework can provide guidance to governments in approaching issues involving the protection of older people's need for social connection in aged care. In doing so, the article considers examples of how the Australian government can ensure choice of living arrangement, individualised support and access to community services and facilities in the residential aged care context to better protect the right to social participation.

Synergistic efficacy of repetitive peripheral magnetic stimulation on central intermittent theta burst stimulation for upper limb function in patients with stroke: a double-blinded, randomized controlled trial.

BACKGROUND: Non-invasive techniques such as central intermittent theta burst stimulation (iTBS) and repetitive peripheral magnetic stimulation (rPMS) have shown promise in improving motor function for patients with stroke. However, the combined efficacy of rPMS and central iTBS has not been extensively studied. This randomized controlled trial aimed to investigate the synergistic effects of rPMS and central iTBS in patients with stroke. METHOD: In this study, 28 stroke patients were randomly allocated to receive either 1200 pulses of real or sham rPMS on the radial nerve of the affected limb, followed by 1200 pulses of central iTBS on the ipsilesional hemisphere. The patients received the intervention for 10 sessions over two weeks. The primary outcome measures were the Fugl-Meyer Assessment-Upper Extremity (FMA-UE) and the Action Research Arm Test (ARAT). Secondary outcomes for activities and participation included the Functional Independence Measure-Selfcare (FIM-Selfcare) and the Stroke Impact Scale (SIS). The outcome measures were assessed before and after the intervention. RESULTS: Both groups showed significant improvement in FMA-UE and FIM-Selfcare after the intervention (p < 0.05). Only the rPMS + iTBS group had significant improvement in ARAT-Grasp and SIS-Strength and activity of daily living (p < 0.05). However, the change scores in all outcome measures did not differ between two groups. CONCLUSIONS: Overall, the study's findings suggest that rPMS may have a synergistic effect on central iTBS to improve grasp function and participation. In conclusion, these findings highlight the potential of rPMS as an adjuvant therapy for central iTBS in stroke rehabilitation. Further large-scale studies are needed to fully explore the synergistic effects of rPMS on central iTBS. TRIAL REGISTRATION: This trial was registered under ClinicalTrials.gov ID No.NCT04265365, retrospectively registered, on February 11, 2020.

Evolution of Food and Nutrition Policy: A Tasmanian Case Study from 1994 to 2023.

Food security is a concept with evolving definitions and meanings, shaped by contested knowledge and changing contexts. The way in which food security is understood by governments impacts how it is addressed in public policy. This research investigates the evolution of discourses and practices in Tasmanian food and nutrition policies from 1994 to 2023. Four foundational documents were analysed using qualitative document analysis, revealing persistent food insecurity issues over three decades. The analysis identified a duality in addressing the persistent policy challenges of nutrition-related health issues and food insecurity: the balancing act between advancing public health improvements and safeguarding Tasmania's economy. The research revealed that from 1994 to 2023, Tasmania's food and nutrition policies and strategies have been characterised by various transitions and tensions. Traditional approaches, predominantly emphasising food availability and, to a limited extent, access, have persisted for over thirty years. The transition towards a more contemporary approach to food security, incorporating dimensions of utilisation, stability, sustainability, and agency, has been markedly slow, indicating systemic inertia. This points to an opportunity for future policy evolution, to move towards a dynamic and comprehensive approach. Such an approach would move beyond the narrow focus of food availability to address the complex multi-dimensional nature of food security.

Re-examining Geospatial Online Participatory Tools for Environmental Planning.

Geospatial online participatory tools, or geo-OPTs, are increasingly used worldwide for engaging the public in planning. Yet, despite growth in the adoption and use of geo-OPTs, and the growing scholarship to accompany it, our understanding of their ability to support public participation in environmental planning is still underdeveloped. In this paper, we investigate the application of a geo-OPT by the United States Army Corps of Engineers (USACE), a leading water management agency in the United States, in three contextually and geographically diverse cases. Through a combination of document analysis, interviews, and participant observation, we examine the processes and dynamics associated with the development and use of the geo-OPT Crowdsource Reporter. Our findings highlight the importance of managing geo-OPTs not in isolation or as a panacea but rather as part of a broader planning process that recognizes the complexity and significance of communication in geo-OPT processes. Although it may be tempting and seemingly simple to create and launch these online tools, our research reveals how a lack of intention early on may lead to underuse or misapplication of the tool. More significantly, real damage can be done, like increased public frustration and alienation, resulting in breakdown in communications or even worsening public relations for federal agencies.

Adapting standardized patient training to improve patients' understanding and preparedness for health care encounters.

OBJECTIVE: To examine the impact of standardized patient (SP) training on SPs' real-life healthcare encounters and explore whether SP training elements can be adapted to increase actual patients' understanding, communication and participation in a patient-centered care model. METHODS: Data were collected from surveys and focus groups with standardized patients and a survey of primary care physicians. Findings were used to create an educational video with pre- and post-viewing surveys of patients' understanding of engagement strategies and plans to use them in future encounters. RESULTS: SPs reported medical visits were more productive because of their ability to understand the visit's framework; crediting their SP training. Patients reported the video will help in planning future medical visits by providing information that increases their understanding of their role in the care process. CONCLUSIONS: SPs' understanding of the visit and its impact on knowledge, skills and affective domains can be transferred to patients in the form of specific strategies that enhance communication and patient participation during medical visits. PRACTICE IMPLICATIONS: A brief educational intervention for patients using SPs' understanding of the medical visit may contribute to enhanced patient participation in future health care encounters and could increase patient engagement in patient-centered models of care.

Barriers and facilitators to parent-delivered interventions for children with or infants at risk of cerebral palsy. An integrative review informed by behaviour change theory.

PURPOSE: Empowering parents to deliver evidenced-based interventions improves outcomes for children with or infants at risk of cerebral palsy (CP), by integrating repetition and contextual learning into daily routines. We aimed to identify the barriers and facilitators to parent-delivered interventions and suggest practice improvements guided by behaviour change models. METHODS: Eight electronic databases were searched to identify studies presenting parent and therapist perspectives on parent-delivered interventions in CP. Included studies were critically appraised using validated checklists. Barriers and facilitators to parent-delivered interventions were identified and categorised into subcomponents of The Capability Opportunity and Motivation Model of Behaviour (COM-B), the Theoretical Domains Framework (TDF) and the Behaviour Change Wheel to formulate appropriate practice recommendations. RESULTS: Thirty-four studies were identified which mainly used qualitative or randomised control trial designs. Barriers to parent-delivery included insufficient parental knowledge, lack of confidence and time. Facilitators included staff continuity, empowering parents, efficient resource utilisation and flexible delivery. Practice recommendations emphasise realistic goal setting, tailored parental education and enhancing the coaching skills of therapists. CONCLUSIONS: Fostering parent-delivered interventions requires addressing knowledge gaps, skill and capacity of parents and therapists. Therapists forming strong alliances with parents and setting collaborative realistic goals are key to successful parent-delivered interventions.

Enhancing parents' skills and knowledge regarding CP interventions can increase their confidence (psychological capability) in actively participating in intervention delivery.Structuring services to accommodate family schedules and providing adequate resources (physical and social opportunity) reduce the burden on families and facilitate their engagement.Providing training and resources to therapists enhances their skills and knowledge (psychological capability) in coaching and educating parents effectively.Emphasizing the value of collaborative goal setting in achieving positive outcomes for the child and acknowledging progress (reflective and automatic motivation) motivates both parents and therapists to actively engage in intervention delivery.

Clinical Patient-Relevant Outcome Domains for Persistent Spinal Pain Syndrome-A Scoping Review and Expert Panels.

Large variation exists in the monitoring of clinical outcome domains in patients with persistent spinal pain syndrome (PSPS). Furthermore, it is unclear which outcome domains are important from the PSPS patient's perspective. The study objectives were to identify patient-relevant outcome domains for PSPS and to establish a PSPS outcomes framework. PubMed, CINAHL, Cochrane, and EMBASE were searched to identify studies reporting views or preferences of PSPS patients on outcome domains. The Arksey and O'Malley framework was followed to identify outcome domains. An expert panel rated the domains based on the importance for PSPS patients they have treated. A framework of relevant outcome domains was established using the selected outcome domains by the expert panel. No studies were found for PSPS type 1. Five studies with 77 PSPS type 2 patients were included for further analysis. Fourteen outcome domains were identified. An expert panel, including 27 clinical experts, reached consensus on the domains pain, daily activities, perspective of life, social participation, mobility, mood, self-reliance, and sleep. Eleven domains were included in the PSPS type 2 outcomes framework. This framework is illustrative of a more holistic perspective and should be used to improve the evaluation of care for PSPS type 2 patients. Further research is needed on the prioritization of relevant outcome domains.

Operationalizing the Consolidated Framework for Implementation Research to build and support the lived experience workforce in direct health service provision.

BACKGROUND: The involvement of people with lived experience (LEX) workers in the development, design, and delivery of integrated health services seeks to improve service user engagement and health outcomes and reduce healthcare gaps. Yet, LEX workers report feeling undervalued and having limited influence on service delivery. There is a need for systematic improvements in how LEX workforces are engaged and supported to ensure the LEX workforce can fully contribute to integrated systems of care. OBJECTIVE: This study aimed to operationalize the Consolidated Framework for Implementation Research (CFIR) using a rigorous scoping review methodology and co-creation process, so it could be used by health services seeking to build and strengthen their LEX workforce. SEARCH STRATEGY: A systematic literature search of four databases was undertaken to identify peer-reviewed studies published between 2016 and 2022 providing evidence of the inclusion of LEX workers in direct health service provision. DATA EXTRACTION AND SYNTHESIS: A descriptive-analytical method was used to map current evidence of LEX workers onto the CFIR. Then, co-creation sessions with LEX workers (n = 4) and their counterparts-nonpeer workers (n = 2)-further clarified the structural policies and strategies that allow people with LEX to actively participate in the provision and enhancement of integrated health service delivery. MAIN RESULTS: Essential components underpinning the successful integration of LEX roles included: the capacity to engage in a co-creation process with individuals with LEX before the implementation of the role or intervention; and enhanced representation of LEX across organizational structures. DISCUSSION AND CONCLUSION: The adapted CFIR for LEX workers (CFIR-LEX) that was developed as a result of this work clarifies contextual components that support the successful integration of LEX roles into the development, design, and delivery of integrated health services. Further work must be done to operationalize the framework in a local context and to better understand the ongoing application of the framework in a health setting. PATIENT OR PUBLIC CONTRIBUTION: People with LEX were involved in the operationalization of the CFIR, including contributing their expertise to the domain adaptations that were relevant to the LEX workforce.

Communication from below: Feedback from employees as a tool for their stabilisation.

Given the current organisational changes in a turbulent global economic context, is the appropriate setting of the communication process, with an emphasis on feedback from employees to management for organisations to cope with external changes. Following the COVID-19 pandemic, communication from below is required as it is a primary issue in the context of significant organisational change and can help to shape positive perceptions of change. The main aim is to evaluate the relationships between selected organisational variables regarding the use of different forms of employee-to-management communication. A questionnaire survey of Czech organisations (n1 = 183) was conducted, and the data obtained were evaluated using statistical tests (Wald statistic) to determine whether a demonstrable relationship existed between the traits. The results showed a relationship between the application of most types of bottom-up communication and organisation size in terms of the number of employees, majority ownership, and, for selected types of communication forms, annual turnover. However, none of the communication types examined depended on the sector in which an organisation operated. The results of the qualitative research confirmed that grassroots communication was crucial in all the types of organisations examined and helped to improve organisational climate. This study contributes to theory and practice by confirming that feedback from employees is a tool for their stabilisation. The managerial implications include the finding that effective feedback settings help prevent conflicts in organisations. The study contributes significantly to the deepening of knowledge on the issue of systematic communication leading to the sustainability of organisations, which is also demonstrated by the almost zero overlap with previous studies.

Using a community engaged research approach to develop the social skills training program for adults with Williams syndrome.

This article describes the development of a distance-delivered social skills training program for adults with Williams syndrome (SSTP-WS) through a community engaged approach. Throughout six phases of development, the research team received input from adults with Williams syndrome, caregivers, service providers, educators, and researchers on (a) the need for a training program and topics to be addressed (Phase 1), (b) an initial draft of the SSTP-WS (Phase 3), (c) the intervention pilot study (Phase 5), and (d) feedback to provide context for the results of the study (Phase 6). The development of the SSTP-WS resulted in an intervention aligned with the Williams syndrome community's values and needs that supports the unique cognitive and behavioral phenotypes and social characteristics of this low incidence disability population.

Social participation, loneliness, and physical inactivity over time: evidence from SHARE.

OBJECTIVES: We aimed to explore the reciprocal effects of social participation, loneliness, and physical inactivity over a period of 6 years in a representative sample of European adults over 50 years old. DESIGN: A longitudinal study with a six-year follow-up period was conducted. SETTING: Four waves of the Survey of Health, Ageing and Retirement in Europe project were used. PARTICIPANTS: This study includes 64,887 participants from Europe and Israel, who were aged 50 or older at the first time. MEASUREMENTS: The relationship between participation in social activities, loneliness and physical inactivity was analyzed, controlling for age, gender, and disability. A series of cross-lagged panel models (CLPMs) were applied to analyze the relationships among these variables. RESULTS: A CLPM with equal autoregressive cross-lagged effects across waves was the best fit to the data (χ2 = 7137.8, CFI = .972, RMSEA = .049, SRMR = .036). The autoregressive effects for the three variables showed high stability across waves, and all the cross-lagged effects in the model were statistically significant. Social activity and physical inactivity maintained a strong negative cross-lagged effect, while their cross-lagged effects on loneliness were comparatively smaller. Social activity had a positive cross-lagged effect on loneliness, while physical inactivity had a negative cross-lagged effect on loneliness. CONCLUSIONS: These findings highlight the importance of promoting physical activity and social participation and addressing loneliness through targeted interventions in older adults.

Association between social participation and memory function among Chinese stroke survivors: The mediating role of depressive symptoms.

Although the association between social participation and memory function has been documented in other populations, whether it exists among stroke survivors is unclear. Additionally, the mechanisms underlying this association are largely unknown. We attempted to examine the association between social participation and memory function in stroke survivors and the possible mediating role of depressive symptoms. A total of 614 stroke survivors (mean age: 64.73 years) drawn from a nationally representative survey in China were investigated. Based on the descriptive statistics, a Pearson's correlation and bootstrapping-based mediation analysis were executed. The results indicated that an increase in social participation was associated with a decrease in depressive symptoms (r = -0.100, p < 0.05) and an increase in memory function (r = 0.162, p < 0.01). Moreover, memory function was significantly negatively related to depressive symptoms (r = -0.243, p < 0.01). In addition, after controlling for sociodemographic factors, depressive symptoms partially mediated the effects of social participation on memory function. Due to the cross-sectional research design, causal relationships cannot be verified between the study variables. However, interventions aimed at aiding stroke survivors in memory impairment recovery may consider strategies to enhance social participation and mitigate depressive symptoms.

Participatory Development of a Virtual Reality Exercise Program for People with Chronic Pain.

Background: By describing how a participatory process led to changes in the design of a study of a virtual reality (VR)-guided exercise and mindfulness intervention tailored to people with chronic musculoskeletal pain, this article makes the case for including end user at an early stage when planning research within this field. Methods: A multidisciplinary panel including end-user representatives, researcher, clinicians, and VR developers participated in a 1-day workshop to design a randomized study and a VR-guided intervention. Results: Through the participatory process, changes were made to the original study design with respect to experimental design, duration, content of VR interventions and mode of delivery. Conclusion: This case exemplifies the importance of including end-user participants in the early phases of planning VR interventions for people with chronic pain.

Work participation and the COVID-19 pandemic: an observational study in people with inflammatory rheumatic diseases and population controls.

Objective: During the coronavirus disease 2019 (COVID-19) crisis, people with inflammatory rheumatic diseases (iRDs) might have been more vulnerable for adverse work outcomes (AWOs) and restrictions in work ability and work performance. Our objectives were to compare AWOs during the pandemic and current work ability between iRD patients and controls, understand which patients are most vulnerable for these outcomes and (3) explore the role of work characteristics on work performance while working remotely. Methods: Patients and population controls in a Dutch COVID-19 cohort study provided information in March 2022 on work participation in March 2020 (pre-pandemic, retrospective) and March 2022 (current). AWOs comprised withdrawal from paid work, working hours reduction or long-term sick leave. Multivariable logistic/linear regression analyses compared outcomes (AWOs/work ability) between groups (patients/controls) and within patients. Results: Of the pre-pandemic working participants, 227/977 (23%) patients and 79/430 (18%) controls experienced AWOs following pandemic onset. A minority of AWOs (15%) were attributed to COVID-19. Patients were more likely to experience any-cause AWOs (odds ratio range 1.63-3.34) but not COVID-related AWOs, with female patients and patients with comorbidities or physically demanding jobs being most vulnerable. Current work ability was lower in female patients compared with controls [ß = -0.66 (95% CI -0.92 to -0.40)]. In both groups, when working remotely, care for children and absence of colleagues had varying effects on work performance (positive 19% and 24%, negative 34% and 57%, respectively), while employer support and reduced commuting had mainly positive effects (83% and 86%, respectively). Conclusion: During the pandemic, people with iRDs remained at increased risk of AWOs. COVID-related AWOs, however, were infrequent.