This scoping review provides an overview of the impact of growing up with a chronically ill family member on young adults (18-25 years old), and their specific needs. Young adults represent an important life stage involving a transition to adulthood, during which individuals' family situations can affect their future. We searched relevant studies following the guideline of Arskey and O'Mailley's methodological framework and the PRISMA statement guidelines for scoping reviews in PubMed, PsychInfo and reference lists to identify articles for inclusion. Studies from 2005 to 2020 were included in this review. Of the 12 studies, six qualitative studies, five quantitative studies and one mixed method study were included. Eight studies discussed the impact, including consequences at a physical and mental level, at their personal development and future perspectives, but also positive effects, such as being capable of organizing their lives. Four studies discussed the needs of young adult carers, including emotional needs, support needs with regard to stimulating autonomy (arising from internal conflicts) and developing their own identity, and the concerned attitude of involved professionals. An unambiguous definition of the target group and further well-designed research are needed to improve clarity about the role of support, so that future professionals can adequately address the needs and wishes of young adults who grow up with an ill family member.
Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and needs.
Background: Although particular technologies can enhance the quality of life (QoL) of people with profound intellectual and multiple disabilities (we use the term pervasive support needs), their objectives and outcomes are understudied. A systematic literature review was therefore conducted to explore this topic.Method: A search of four databases yielded 64 studies. Data were extracted on their general characteristics, methods and sample characteristics as well as the technology types, QoL domains and application within ecological systems. A narrative synthesis was subsequently developed.Results: Most of the studies applied assistive technology (AT) and focused on personal development and self-determination on an individual level.Conclusions: Technology can enhance the QoL of people with pervasive supportneeds. There are indications that although MT and UD-based technology are used in practice, few studies have examined these technologies. Therefore, there is a knowledge gap regarding the kinds of technology that are used in practice.
In recent years, ArtEZ has worked on a broadly supported strategic research agenda on the themes New Ecologies of Matter (ecological challenges), Social Equity (social-societal issues), (Un)Learning Practices (educational innovations) and (Non)CybernEtic Fabric (technological developments). Building on these strategic themes, the ArtEZ Research Collective as developed an international research strategy to become a valuable partner in the relevant Horizon Europe (HEU) areas of Environment, Industry and Social science and humanities. With its specific knowledge position and approach from arts and creativity, ArtEZ is convinced that it can play a distinctive role in European consortia to tackle various challenges in these areas, in particular from the perspective and research topics of the professorships Fashion and Tactical Design. To achieve its ambitions and goals in its targeted research topics, ArtEZ is convinced that a combination of international connections and local applications is key for successful impact. Building upon existing relations and extending the international research position requires extra efforts, e.g., by developing a strong international framework of state-of-the-art research results, impacts and ambitions. Therefore ArtEZ needs to (further) build on both its international network and its supportive infrastructure. With this proposal ArtEZ is presenting its goals and efforts to work on its international recognition as a valuable research partner, and to broaden its international network in cutting-edge research and other stakeholders. With regards to its supporting infrastructure, ArtEZ has the ambition to expand the impact of the Subsidy Desk to become a professional partner to the professorships. This approach requires a further professionalization and extension of both the Subsidy Desk organization and its services, and developing and complementing skills, expertise and competences to comply to the European requirements.
Physical rehabilitation programs revolve around the repetitive execution of exercises since it has been proven to lead to better rehabilitation results. Although beginning the motor (re)learning process early is paramount to obtain good recovery outcomes, patients do not normally see/experience any short-term improvement, which has a toll on their motivation. Therefore, patients find it difficult to stay engaged in seemingly mundane exercises, not only in terms of adhering to the rehabilitation program, but also in terms of proper execution of the movements. One way in which this motivation problem has been tackled is to employ games in the rehabilitation process. These games are designed to reward patients for performing the exercises correctly or regularly. The rewards can take many forms, for instance providing an experience that is engaging (fun), one that is aesthetically pleasing (appealing visual and aural feedback), or one that employs gamification elements such as points, badges, or achievements. However, even though some of these serious game systems are designed together with physiotherapists and with the patients’ needs in mind, many of them end up not being used consistently during physical rehabilitation past the first few sessions (i.e. novelty effect). Thus, in this project, we aim to 1) Identify, by means of literature reviews, focus groups, and interviews with the involved stakeholders, why this is happening, 2) Develop a set of guidelines for the successful deployment of serious games for rehabilitation, and 3) Develop an initial implementation process and ideas for potential serious games. In a follow-up application, we intend to build on this knowledge and apply it in the design of a (set of) serious game for rehabilitation to be deployed at one of the partners centers and conduct a longitudinal evaluation to measure the success of the application of the deployment guidelines.
Dutch society faces major future challenges putting populations’ health and wellbeing at risk. An ageing population, increase of chronic diseases, multimorbidity and loneliness lead to more complex healthcare demands and needs and costs are increasing rapidly. Urban areas like Amsterdam have to meet specific challenges of a growing and super divers population often with a migration background. The bachelor programs and the relating research groups of social work and occupational therapy at the Amsterdam University of Applied Sciences innovate their curricula and practice-oriented research by multidisciplinary and cross-domain approaches. Their Centres of Expertise foster interprofessional research and educational innovation on the topics of healthy ageing, participation, daily occupations, positive health, proximity, community connectedness and urban innovation in a social context. By focusing on senior citizens’ lives and by organizing care in peoples own living environment. Together with their networks, this project aims to develop an innovative health promotion program and contribute to the government missions to promote a healthy and inclusive society. Collaboration with stakeholders in practice based on their urgent needs has priority in the context of increasing responsibilities of local governments and communities. Moreover, the government has recently defined social base as being the combination of citizen initiatives, volunteer organizations , caregivers support, professional organizations and support of vulnerable groups. Kraktie Foundations is a community based ethno-cultural organization in south east Amsterdam that seeks to research and expand their informal services to connect with and build with professional care organizations. Their aim coincides with this project proposal: promoting health and wellbeing of senior citizens by combining intervention, participatory research and educational perspectives from social work, occupational therapy and hidden voluntary social work. With a boundary crossing innovation of participatory health research, education and Kraktie’s work in the community we co-create, change and innovate towards sustainable interventions with impact.
