Abstract Background: To address the lack of social interaction and meaningful activities for persons with dementia (PWD) in nursing homes an artistic Photo-Activity was designed. The present study aims to develop a digital version of the Photo-Activity and to investigate its implementation and impact on nursing home residents with advanced dementia, and their (in)formal carers. Methods: First, within a user-participatory design, a digital-app version of the Photo-Activity will be developed and pilot-tested, in co-creation with (in)formal carers and PWD. Next, the feasibility and effectiveness of the Photo-Activity versus a control activity will be explored in a randomized controlled trial with nursing home residents (N=90), and their (in)formal carers. Residents will be offered the Photo- Activity or the control activity by (in)formal carers during one month. Measurements will be conducted by independent assessors at baseline (T0), after one month (T1) and at follow up, two weeks after T1 (T2). Qualitative and quantitative methods will be used to investigate the effects of the intervention on mood, social interaction and quality of life of the PWD, sense of competence of informal carers, empathy and personal attitude of the formal carers, and quality of the relationship between the PWD, and their (in)formal carers. In addition, a process evaluation will be carried out by means of semi-structured interviews with the participating residents and (in)formal carers. Finally, an implementation package based on the process evaluation will be developed, allowing the scaling up of the intervention to other care institutions. Discussion: Results of the trial will be available for dissemination by Spring 2023. The digital Photo-Activity is expected to promote meaningful connections between the resident with dementia, and their (in)formal carers through the facilitation of person-centered conversations. Trial registration: Netherlands Trial Register: NL9219; registered (21 January 2021); NTR (trialregister.nl)
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Humans use metaphors in thinking. Most metaphors are visual. In processing information stimuli the mind depends partly on visual codes. Information is processed and stored through two channels: one for non-verbal information and another for verbal information. The two different areas of information in the brain are interconnected. The information is stored in patterns that form an inner representation of how individuals perceive their reality and their self. The active processing of new information, remembering and the self-image are related phenomena, that influence each other, sometimes leading to biased interpretation or even reconstruction of contents in each of these areas. Imagination, expectations and anticipations of the future and memories are the more active manifestations of this process. In this process mimesis plays an important role. Mimesis is the imitation of reality in play, story-telling or creating images of how things should look like in the future. Through mimesis people can anticipate on roles in social life, or appropriate experiences from someone else and relate them to one’s own life story. When this happens the information is related to the self through processes of association and becomes ‘Erfahrung’.
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Aim: Participation of adolescents with autism spectrum disorder hardly occurs in settings outside of home and school. Little is known about how their participation is influenced by environmental factors. This study explored how and why adolescents with autism spectrum disorder perceive aspects of their environment as facilitators or barriers to their participation outside of home and school. Method: This explanatory case study explored the participation experiences of adolescents with autism spectrum disorder (15–21 years) from Zurich and surroundings with in-depth interviews and photo-elicitation, using photos made by the participants during activities outside of home and school. Data was analysed with a 7-step procedure. Result: The presence of two main themes seemed necessary to facilitate participation outside of home and school: “environmental prerequisites to attend activities”, which consists of five subthemes, such as “the company of trusted persons” and “the provision of knowledge and information”, and “social interchange and engagement”, which consists of three subthemes and describes how actual involvement can be supported. Conclusion: Our findings highlight the influence of trusted persons on adolescents with autism spectrum disorder, and the need to extend the support network for these adolescents to other individuals, services and society so that their participation in activities can be encouraged.
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Aim: Participation of adolescents with autism spectrum disorder hardly occurs in settings outside of home and school. Little is known about how their participation is influenced by environmental factors. This study explored how and why adolescents with autism spectrum disorder perceive aspects of their environment as facilitators or barriers to their participation outside of home and school. Method: This explanatory case study explored the participation experiences of adolescents with autism spectrum disorder (15–21 years) from Zurich and surroundings with in-depth interviews and photo-elicitation, using photos made by the participants during activities outside of home and school. Data was analysed with a 7-step procedure. Result: The presence of two main themes seemed necessary to facilitate participation outside of home and school: “environmental prerequisites to attend activities”, which consists of five subthemes, such as “the company of trusted persons” and “the provision of knowledge and information”, and “social interchange and engagement”, which consists of three subthemes and describes how actual involvement can be supported. Conclusion: Our findings highlight the influence of trusted persons on adolescents with autism spectrum disorder, and the need to extend the support network for these adolescents to other individuals, services and society so that their participation in activities can be encouraged.
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Abstract Background: To address the lack of social interaction and meaningful activities for persons with dementia (PWD) in nursing homes an artistic Photo-Activity was designed. The present study aims to develop a digital version of the Photo-Activity and to investigate its implementation and impact on nursing home residents with advanced dementia, and their (in)formal carers. Methods: First, within a user-participatory design, a digital-app version of the Photo-Activity will be developed and pilot-tested, in co-creation with (in)formal carers and PWD. Next, the feasibility and effectiveness of the Photo-Activity versus a control activity will be explored in a randomized controlled trial with nursing home residents (N=90), and their (in)formal carers. Residents will be offered the Photo- Activity or the control activity by (in)formal carers during one month. Measurements will be conducted by independent assessors at baseline (T0), after one month (T1) and at follow up, two weeks after T1 (T2). Qualitative and quantitative methods will be used to investigate the effects of the intervention on mood, social interaction and quality of life of the PWD, sense of competence of informal carers, empathy and personal attitude of the formal carers, and quality of the relationship between the PWD, and their (in)formal carers. In addition, a process evaluation will be carried out by means of semi-structured interviews with the participating residents and (in)formal carers. Finally, an implementation package based on the process evaluation will be developed, allowing the scaling up of the intervention to other care institutions. Discussion: Results of the trial will be available for dissemination by Spring 2023. The digital Photo-Activity is expected to promote meaningful connections between the resident with dementia, and their (in)formal carers through the facilitation of person-centered conversations. Trial registration: Netherlands Trial Register: NL9219; registered (21 January 2021); NTR (trialregister.nl)
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This paper introduces the open-source Urban Belonging (UB) toolkit, designed to study place attachments through a combined digital, visual and participatory methodology that foregrounds lived experience. The core of the toolkit is the photovoice UB App, which prompts participants to document urban experiences as digital data by taking pictures of the city, annotating them, and reacting to others’ photos. The toolkit also includes an API interface and a set of scripts for converting data into visualizations and elicitation devices. The paper first describes how the app’s design specifications were co-created in a process that brought in voices from different research fields, planners from Gehl Architects, six marginalized communities, and citizen engagement professionals. Their inputs shaped decisions about what data collection the app makes possible, and how it mitigates issues of privacy and visual and spatial literacy to make the app as inclusive as possible. We document how design criteria were translated into app features, and we demonstrate how this opens new empirical opportunities for community engagement through examples of its use in the Urban Belonging project in Copenhagen. While the focus on photo capture animates participants to document experiences in a personal and situated way, metadata such as location and sentiment invites for quali-quantitative analysis of both macro trends and local contexts of people’s experiences. Further, the granularity of data makes both a demographic and post-demographic analysis possible, providing empirical ground for exploring what people have in common in what they photograph and where they walk. And, by inviting participants to react to others’ photos, the app offers a heterogeneous empirical ground, showing us how people see the city differently. We end the paper by discussing remaining challenges in the tool and provide a short guide for using it.
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This paper aims to extend dark tourism scholarship concerned with existential aspects of the human nature and the power of ‘dark places’ to provoke our thinking about the meaning and purpose of human existence. Our main focus is on the artistic expressions in the form of murals that have emerged in the years following the nuclear disaster in Chernobyl, questioning the significance and meanings they have for the Chernobyl Exclusion Zone, in the context of tourists' perceptions and, more generally, in the context of our being in the world. To that end, we deconstruct the tourist experience of dark sites through knitting together dark tourism, existentialism and street art.
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Aims and objectives To gain insight into the perceived added value of a decision support App for district nurses and case managers intended to support a problem assessment and the provision of advices on possible solutions to facilitate ageing in place of people with dementia, and to investigate how they would implement the App in daily practice. Background District nurses and case managers play an important role in facilitating ageing in place of people with dementia (PwD). Detecting practical problems preventing PwD from living at home and advising on possible solutions is complex and challenging tasks for nurses and case managers. To support them with these tasks, a decision support App was developed. Methods A qualitative study using semi‐structured interviews was conducted. A photo‐elicitation method and an interview guide were used to structure the interviews. The data were analysed according to the principles of content analysis. Results In five interviews with seven district nurses and case managers, the added value was described in terms of five themes: (a) providing a broader/better overview of possible solutions; (b) providing a guideline/checklist for problem assessment and advice on solutions; (c) supporting an in‐depth problem assessment; (d) being a support tool for unexperienced case managers/district nurses; and (e) providing up‐to‐date information. The participants regarded the App as complementary to their current work procedure, which they would use in a flexible manner at different stages in the care continuum. Conclusions The participants valued both parts, the problem assessment and the overview of possible solutions. An important requisite for the usage would be that the content is continuously updated. Before implementation of the App can be recommended, an evaluation of its effectiveness regarding decision‐making should be conducted. Relevance to clinical practice This study underpins the need of nurses and case managers for decision support with regard to problem assessment and providing advices on possible solutions to facilitate ageing in place of PwD. There results also show the importance of listening to users experience and their perceived added value of decision support tools as this helps to explain the lack of statistically significant effects on quantitative outcome measure in contrast to a high willingness to use the App in a previous study.
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This article focuses on the multiple feelings of belonging that refugee-background youngsters experience toward their country of origin (Syria)and their city of resettlement (Rotterdam). The conceptual framework of Antonsich is used to examine how personal and social dimensions shape their belonging. Based on interviews and photo-elicitation with 19 young people, this study shows that the feeling of belonging toward Syria is presented as a natural given, whereas the feeling of belonging toward Rotterdam developed over time, shaped by increasing familiarity and normalcy. Although exclusion is experienced incidentally, this does not greatly hinder youngsters’ sense of belonging toward Rotterdam.
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BACKGROUND: Communicative participation is the most important outcome of speech and language therapy, but there are no measurement instruments for children, adolescents, and young adults. This paper describes the development of MyCommunication-Youth: an item bank to measure self-reported communicative participation in children, adolescents and young adults with various communication disorders.AIMS: 1) To develop a comprehensive, comprehensible item bank for measuring communicative participation in children, adolescents, and young adults with communication problems. 2) To assess the content validity of the item bank in a sample of these groups. 3) To define criteria for the minimal age at which children with communication difficulties can self-report their communicative participation.METHOD: Based on a literature review and two concept elicitation studies three initial versions of item pools were developed: one for children, one for adolescents and one for young adults. These pools were pilot tested, using cognitive debriefing interviews, on comprehensibility and comprehensiveness in a diverse group of participants with communication difficulties, whereafter a second version of the item pools were created. Hereafter, the content validity was assessed in the target population and in a group of speech and language therapists.RESULTS: Initially, three item pools were created for children (58 items), adolescents (78 items), and young adults (84 items). In the pilot test with 33 children adolescents and young adults with communication difficulties, items were revised for comprehensibility, some items were added for comprehensiveness, and some items were deleted because they appeared irrelevant, resulting in updated pools of 50, 69, and 72 items. In the content validity study, cognitive interviews with 27 participants and a focus group with 8 professionals identified additional revisions. Most items were comprehensible, but some were irrelevant for specific subpopulations of communication difficulties. Two new items were added after the input of professionals, whereafter the item bank was found comprehensive.CONCLUSIONS: MyCommunication-Youth is an item bank for measuring communicative participation in children, adolescents and young adults with various communication difficulties. Three versions of the instrument were created: MyCommunication-Children of 49 items, MyCommunication-Adolescents of 70 items and MyCommunication-YoungAdults of 73 items. The item bank is comprehensible, relevant and comprehensive according to the target population and target professionals.
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