Even though citizen and patient engagement in health research has a long tradition, citizen science in health has only recently gained attention and recognition. However, at present, there is no clear overview of the specifics and challenges of citizen science initiatives in the health domain. Such an overview could contribute to highlighting and articulating the different needs of stakeholders engaged in any form of citizen science in the health domain. It may also encourage the input of citizens and patients alike in health research and innovation, policy, and practice. This paper reports on a survey developed by the European Citizen Science Association (ECSA)’s Working Group “Citizen Science for Health,” to highlight the perceived characteristics and enabling factors of citizen science in the health domain, and to formulate a direction for future work and research. The survey was available in six languages and was open between January and August 2022. The majority of the 254 respondents were from European countries, and the largest stakeholder respondent group was researchers. Respondents were asked about their perspectives on the particular characteristics of citizen science performed in health and biomedical research, as well as the challenges and opportunities it affords. Ethics, the complexity of the health domain, and the overlap in roles whereby the researcher is sometimes also the subject of research, were the main issues suggested as being specific to citizen science in health. The top two areas that respondents identified as in need of development were “balanced return on investment” and “ethics.” This publication discusses these and other conditions with references to current literature.
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Empirical studies in the creative arts therapies (CATs; i.e., art therapy, dance/movement therapy, drama therapy, music therapy, psychodrama, and poetry/bibliotherapy) have grown rapidly in the last 10 years, documenting their positive impact on a wide range of psychological and physiological outcomes (e.g., stress, trauma, depression, anxiety, and pain). However, it remains unclear how and why the CATs have positive effects, and which therapeutic factors account for these changes. Research that specifically focuses on the therapeutic factors and/or mechanisms of change in CATs is only beginning to emerge. To gain more insight into how and why the CATs influence outcomes, we conducted a scoping review (Nstudies = 67) to pinpoint therapeutic factors specific to each CATs discipline, joint factors of CATs, and more generic common factors across all psychotherapy approaches. This review therefore provides an overview of empirical CATs studies dealing with therapeutic factors and/or mechanisms of change, and a detailed analysis of these therapeutic factors which are grouped into domains. A framework of 19 domains of CATs therapeutic factors is proposed, of which the three domains are composed solely of factors unique to the CATs: “embodiment,” “concretization,” and “symbolism and metaphors.” The terminology used in change process research is clarified, and the implications for future research, clinical practice, and CATs education are discussed.
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Background: On two Care Innovation Units in the Netherlands, staff, students and Lecturer Practitioners work intensively together to provide care, create a rich learning environment, and to foster innovation and research. In striving to advance the quality of care and to develop person centred cultures a preference is given to participative forms of research in which diverse experiences and different types of knowledge are valued. Aims and Objectives: The research described here had two overarching aims: the improvement of practice situations and the encouragement of the integration of work and learning. This article focuses on our actions and learning with respect to fostering participation during this project. Design and methods: Within the action research methodology used, participative work-forms and research methods were chosen. For example, a responsive approach to evaluation of practice, use of narratives and the stimulation and use of creativity to help in exploring and sharing feelings, values and different forms of knowledge. In this article we use Arnstein's ladder of citizen participation to frame our reflection on enabling participation within this project. Results Participation took various forms and vacillated throughout the project. In addition to particular facilitation strategies, four factors emerged as influential in enabling or inhibiting aspects of participation among stakeholders: individual motivations and interests, the make-up of and atmosphere within the group, and the time made available to engage in research activities. Conclusions Participation in research is both more complex and dynamic than Arnstein's typology suggests. Moving 'up' the ladder may not be appropriate as a goal in and of itself. Instead, meeting and responding to each other's situations, as stakeholders, seems a more appropriate focus. Taking responsibility, as facilitator, for certain research activities, can free other participants to focus on elements which interest them and from which they derive satisfaction.
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The pace of technology advancements continues to accelerate, and impacts the nature of systems solutions along with significant effects on involved stakeholders and society. Design and engineering practices with tools and perspectives, need therefore to evolve in accordance to the developments that complex, sociotechnical innovation challenges pose. There is a need for engineers and designers that can utilize fitting methods and tools to fulfill the role of a changemaker. Recognized successful practices include interdisciplinary methods that allow for effective and better contextualized participatory design approaches. However, preliminary research identified challenges in understanding what makes a specific method effective and successfully contextualized in practice, and what key competences are needed for involved designers and engineers to understand and adopt these interdisciplinary methods. In this proposal, case study research is proposed with practitioners to gain insight into what are the key enabling factors for effective interdisciplinary participatory design methods and tools in the specific context of sociotechnical innovation. The involved companies are operating at the intersection between design, technology and societal impact, employing experts who can be considered changemakers, since they are in the lead of creative processes that bring together diverse groups of stakeholders in the process of sociotechnical innovation. A methodology will be developed to capture best practices and understand what makes the deployed methods effective. This methodology and a set of design guidelines for effective interdisciplinary participatory design will be delivered. In turn this will serve as a starting point for a larger design science research project, in which an educational toolkit for effective participatory design for socio-technical innovation will be designed.
The purpose of this project was to create a roadmap with selected mechanisms to assist destination management organisations to optimize the benefits generated by tourism for their destination communities and ensure that it is shared equitably. By providing tools to identify and address inequality in terms of access to the benefits and value tourism generates, it is envisaged that a more equitable tourism model can be implemented leading to the fair distribution of benefits in destination communities, potentially increasing the value for previously excluded or underserved groups. To produce the roadmap, the study team will explore the range of challenges that hinder the equitable distribution of tourism-induced benefits in destinations as well as the enabling factors that influence the extent to which this is achieved. The central question the research team has set out to answer is the following: What does an equitable tourism model look like for destination communities?Societal issueHowever, while those directly involved in tourism will gain the most, the burden of hosting visitors is widely felt by local communities. This imbalance has, unsurprisingly, sparked civil mobilisations and protests in destinations around the world. It’s clear that placemaking and benefit-sharing must be part of the future of destination management to maintain public support. This project addressed issues around equity (environmental, economic, spatial, cultural and tourism experience). In line with the intentions set out in the CELTH Agenda Conscious Destinations.Benefit to societyBased on 25 case studies around 40 mechanisms were identified that can grow or better distribute the value from tourism, so that more people in destination communities benefit. These mechanisms are real-world practices already in use. DMOs and NTOs can consider introducing the mechanisms that best fit their destination context, pulling levers such as: taxes and revenue sharing, business incubation and training, licencing and zoning, community enterprises and volunteering, and product development..This report also outlines a pathway to an Equity-Driven Management (EDM) approach, which is grounded in participatory decision-making principles and aims to create a more equitable tourism system by strengthening the hand of destination governance and retaining control of local resources.Collaborative partnersNBTC, the Travel Foundation, Destination Think, CELTH, ETFI, HZ.
Wheelchair users with a spinal cord injury (SCI) or amputation generally lead an inactive lifestyle, associated with reduced fitness and health. Digital interventions and sport and lifestyle applications (E-platforms) may be helpful in achieving a healthy lifestyle. Despite the potential positive effects of E-platforms in the general population, no studies are known investigating the effects for wheelchair users and existing E-platforms can not be used to the same extent and in the same manner by this population due to differences in physiology, body composition, exercise forms and responses, and risk injury. It is, therefore, our aim to adapt an existing E-platform (Virtuagym) within this project by using existing data collections and new data to be collected within the project. To reach this aim we intend to make several relevant databases from our network available for analysis, combine and reanalyze these existing databases to adapt the existing E-platform enabling wheelchair users to use it, evaluate and improve the use of the adapted E-platform, evaluate changes in healthy active lifestyle parameters, fitness, health and quality of life in users of the E-platform (both wheelchair users and general population) and identify determinants of these changes, identify factors affecting transitions from an inactive lifestyle, through an intermediate level, to an athlete level, comparing wheelchair users with the general population, and comparing Dutch with Brazilian individuals. The analysis of large datasets of exercise and fitness data from various types of individuals with and without disabilities, collected over the last years both in the Netherlands and Brazil, is an innovative and potentially fruitful approach. It is expected that the comparison of e.g. wheelchair users in Amsterdam vs. Sao Paulo or recreative athletes vs. elite athletes provides new insight in the factors determining a healthy and active lifestyle.
