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"Objectives: Research on what matters most to people with dementia is crucial for developing tailored interventions and support. This study explored how people with dementia experience their everyday lives, providing insight into what is important to them to live the best they can at home. Methods: Inspired by a phenomenological approach, open interviews were conducted with 15 people with dementia, supplemented by home tours and walking interviews. Data collection included one to three sessions per participant. Data were analysed using descriptive content analysis and followed the phases of open, axial, and selective coding. A co‐researcher group of seven people with dementia was consulted during the analysis to help interpret the emergent findings. Findings: Six dimensions of what matters most in everyday life were identified: 1) Engaging in meaningful activities, which included routines, household chores, leisure, day activities, and volunteering or work; 2) Keeping a sense of connection, in relationships within the home, with family, friends, groups, and the neighbourhood; 3) Having a sense of belonging, which included attachments inside and outside the home, and to cherished objects; 4) Connecting to self, which included the ability to reflect on past experiences, live in the present moment and anticipate the future; 5) Adjusting to ongoing changes, which included alterations in sensory perceptions, perceptions of the physical environment, and navigating shifts in interpersonal dynamics; 6) Being open to help and support, from professionals, community and society. Conclusions: For people with dementia, everyday life is a continuous balancing act between what matters most and what can be achieved daily. This is not only related to dementia but is also embedded in the wider perspective of life history, relational networks, and the physical environment. This study highlights the importance of identifying what matters most to people with dementia to provide person‐centred support."
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Background: People with severe mental illnesses (SMIs) have difficulty participating in society through work or other daily activities. Aims: To establish the effectiveness with which the Boston University Approach to Psychiatric Rehabilitation (BPR) improves the level of social participation in people with SMIs, in the Netherlands. Method: In a randomized controlled trial involving 188 people with SMIs, we compared BPR (n = 98) with an Active Control Condition (ACC, n = 90) (Trial registration ISRCTN88987322). Multilevel modeling was used to study intervention effects over two six-month periods. The primary outcome measure was level of social participation, expressed as having participated in paid or unpaid employment over the past six months, as the total hours spent in paid or unpaid employment, and as the current level of social participation. Secondary outcome measures were clients’ views on rehabilitation goal attainment, Quality of Life (QOL), personal recovery, self-efficacy, and psychosocial functioning. Results: During the study, social participation, QOL, and psychosocial functioning improved in patients in both groups. However, BPR was not more effective than ACC on any of the outcomes. Better social participation was predicted by previous work experience and a lower intensity of psychiatric symptoms. Conclusions: While ACC was as effective as BPR in improving the social participation of individuals with SMIs, much higher percentages of participants in our sample found (paid) work or other meaningful activities than in observational studies without specific support for social participation. This suggests that focused rehabilitation efforts are beneficial, irrespective of the specific methodology used.
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In this project on volunteering in LTH organisation we focus on three aims:1. To explain why organisations in different LTH sectors and regions had, have or need volunteers, how they interact with these volunteers, and the consequences (benefits and challenges) of volunteerism for these organisations.2. To determine how to find the right balance between paid and unpaid staff within the same organisation, considering the LTH sector and region they belong to, in order to create a healthy ecosystem within it (bearing in mind that no organisation can have both volunteers and paid staff do the same job - see above).3. To understand the perspectives, motives and expectations of why people (decide to) volunteer, how they interact with the organisation (management, paid staff) during volunteering, in order to interest them, recruit them, make use of them and retain them. In addition, it is also our aim to explain the benefits and challenges for people to volunteer.In this study, we will use an integrated approach, which implies that we aren’t only interested in the people- or organisation-side of volunteering (actor-side). We will also focus on the interactions between volunteers, paid staff and organisation during volunteering (core of the practice) in a certain LTH organisation, sector and region in the Netherlands (context-side). Studying volunteering in its specific contexts (organisation, sector, region) using an integrated practice approach, hasn’t been done before. In addition, as more and more LTH organisations in the Netherlands rely on volunteers (for their survival), either for economic, social or community (mienskip) reasons (context-related conditions), there is a need for a better understanding of volunteering (as indicated by aim 1-3). Finally, as not much literature has been based on Dutch studies about volunteering and the recruitment and retention of volunteers, this project will fill this gap.Besides the aims as outlined before, a more specific goal of this project is to provide recommendations for a sustainable business model for organisations to embrace volunteerism without affecting the structure of employees. In close cooperation with different LTH organisations, we will develop interventions as policy making instruments (and therefore also for the whole region where they are located). Furthermore, this research will contribute to industry, research (see also below), education (idem) and society. Our ultimate goal is to foster the wellbeing of the volunteers, paid staff and organisations and overall to contribute to social sustainability within The Netherlands.The above-mentioned aims and conceptual model lead to the following research question: How can volunteering in the LTH sectors in Dutch regions be shaped in a sustainable way for both volunteers as well as organisations?In line with what we discussed earlier, this also means contributing to a more stable labour market in hospitality, leisure and tourism in which voluntary work is recognised as an important and indispensable component of a healthy labour ecosystem.The approach we intend to adopt is a qualitative one based on narrative inquiry. While in the literature a quantitative approach using surveys to gather data is mostly used in understanding volunteerism and in measuring motives, we will observe and connect with the volunteers’ work in each sector/case identified and collect and analyse their individual stories. In addition, and in line with our integrated approach, we will investigate how the LTH organisations connected to these cases view the role, value and future of volunteerism.Societal IssueOur insights into volunteers’ work in different sectors will improve their quality of work by revealing drivers of their satisfaction, turnover, motivation, and passion. Managers can use these insights to train and retain volunteers as an integral part of not only their events, but the broader community. It is well-known that robust volunteering programmes are a cornerstone of contemporary social cohesion, and our findings will show how storytelling can strengthen these processes.Benefit to societyThis project will contribute in three ways to the LTH sector. The three outcomes of this study are first around a better understanding of what meaningful volunteering is, second, around the value of volunteers to LTH organisations, and, thirdly, about the value of such activities to Dutch society.The project will provide practical advice to LTH organisations on which interventions to use and in which contexts. This tangible output might take the form of a report, guide(s) mentioned above, and/or another instrument that suits the needs of managers and volunteers. The instrument(s) selected by LTH organisations and volunteers will help to disseminate best practices as well as to highlight the potential of volunteers and volunteering to wider society, other organisations and to current and potential volunteers. By following the steps in or using these instruments, we believe volunteer organisations will be better able to profile themselves and to recruit and retain volunteers.The present study will bring innovation in the field by generating new narratives on volunteerism, and by designing an engaging and appealing path for volunteers to join organisations. At the same time, it will design a structure for organisations to work with volunteers in a sustainable way.Consortium partners: Rodney Westerlaken, Geesje Duursma (both NHL Stenden, Leeuwarden)
