University of Humanistic Studies OAI Repository
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Levensverhalen over Werk:Een onderzoek naar de stap van dagbesteding naar (beschut) werk
Full text linkThe Contribution of Chaplaincy to Primary and Community Care:A Semi-Structured Interview Study With Clients
No full textINTRODUCTION: A broad range of studies have associated spirituality with health outcomes. However, the integration of spiritual care in primary and community care has substantially lagged behind. Chaplains, as specialist spiritual caregivers, are increasingly employed in primary and community care to fill the gap. To investigate the implementation of chaplains in these settings from the perspective of clients, this study focused on the following research question: what are primary and community care clients' reasons to seek chaplaincy care, their ideas of care goals, and what outcomes of care do they report?METHODS: 24 Dutch chaplaincy clients were interviewed.RESULTS: Clients sought support from a chaplain for existential concerns, or an existential struggle encompassing several areas of life. They described goals and outcomes of care in 3 domains: (1) the relationship with the chaplain, which included being seen, heard and acknowledged; (2) meaning-making, where they gained insight into and/or processed life-events, and connected more with themselves, others and/or the sacred; and (3) well-being, which included feeling better and finding peace.CONCLUSIONS: This study provides novel insights into clients perspective on chaplains' contributions in primary and community care. Their experiences are key to further shaping the implementation of chaplaincy in these settings.</p
Seeking consensus on dilemmas related to euthanasia in dementia based on an advance directive:a Delphi study from a medical, ethical and legal perspective
No full textEuthanasia in dementia based on advance euthanasia directives (AEDs) is possible within the Dutch Euthanasia law. Yet, physicians struggle with the responsibility of interpreting the law's open norms in cases of advanced dementia, which includes the fulfilment of the due care criteria. This Delphi study aims to analyse arguments and seek consensus from medical, ethical and legal perspectives on ethical dilemmas in such cases. Thirty participants, equally divided in expertise, took part in a three-round Delphi with a total of 11 statements on ethical dilemmas. Despite differences in opinions and argumentations between panellists, consensus was reached on seven statements regarding different topics. Consensus was reached that the (behavioural) expressions of a person with dementia should be considered throughout the progression of decision-making disabilities. In such cases, a wish to live should be prioritised over an AED. Although substitute decision-making is not an option in case of euthanasia requests, both people around the person with dementia as well as their AED can be supportive in the decision-making process. Advance directives with formulations such as 'if I have to admitted to a nursing home, then I want euthanasia' are found to be infeasible. At all times, it is important to pay attention to alternatives to euthanasia, which includes following existing guidelines on problem behaviour. Physicians may benefit from the arguments pertaining to dilemmas encountered and the fulfilment of the due care criteria to either justify their decisions in euthanasia cases based on an AED, or to support decisions to refrain from euthanasia.</p
Arts-Based Communities Fostering Social Justice of Persons With Intellectual Disabilities :A Qualitative Interpretive Synthesis Scoping Review of Design Elements, Approaches, and Artistic Expressions
No full textThis scoping review explores the design elements, approaches, and artistic expressions of arts-based communities (ABCs) with the potential to foster social justice of individuals with intellectual disabilities. Using a qualitative, interpretive synthesis methodology, the review includes 27 peer-reviewed studies identified through a prior systematic search aligned with PRISMA guidelines and evaluated for methodological quality. Despite significant differences, ABCs share key features: cocreative collaboration, audience engagement, person-centered and improvisational methods, and expressive storytelling rooted in lived experience. These communities function not as fixed models but as relational, transformative spaces that promote narrative agency and challenge ableist norms. The findings contribute to a growing body of knowledge informing a social justice-oriented creative arts therapies praxis. It highlights how ABCs can expand the role of art therapists and other creative arts therapists beyond clinical settings, emphasizing community-based practices grounded in the social model of disability. However, challenges remain. More attention is needed to understand how individuals with intellectual disabilities experience and shape these communities and how they understand their meaning and impact in the context of social justice. Future research should center on these voices, acknowledging the diversity of lived experiences across different societal and cultural contexts
Interpersoonlijk kennis-maken:Een innovatieve collaboratieve benadering in residentiële zorg voor mensen met een (ernstige) verstandelijke beperking en moeilijk verstaanbaar gedrag
No full textMensen met een matige tot ernstige verstandelijke beperking (M/E VB) en moeilijk verstaanbaar gedrag worden nog steeds vrijwel uitsluitend ontmoet en begrepen binnen de context van een hooggespecialiseerd professioneel zorgsysteem. In de bredere samenleving, waar een grotere diversiteit aan perspectieven op (alledaagse) omgangsvormen, ontmoetingen, relaties en levenswijzen geldt, zijn zij vrijwel onzichtbaar. Deze (en andere) uitsluitingsdynamieken maken dat alledaagse relaties met bewoners met M/E VB en moeilijk verstaanbaar gedrag grotendeels afhankelijk blijven van de interpretatiekaders en handelingswijzen van professionals. Professionals zijn opgeleid en gesocialiseerd binnen hooggespecialiseerde zorgcontexten, ondanks de groeiende wetenschappelijke en professionele erkenning dat moeilijk verstaanbaar gedrag een veelzijdig en contextueel fenomeen is. In dit artikel doen wij verslag van een pionierend initiatief (Project WAVE) dat tot doel had een vernieuwende en integrale benadering van moeilijk verstaanbaar gedrag te ontwikkelen binnen vastlopende zorgpraktijken. In deze innovatieve, collaboratieve benadering wilden wij een intensieve en duurzame uitwisseling faciliteren tussen ‘insiders’—professionals uit gespecialiseerde zorgcontexten—en ‘outsider-onderzoekers’—personen die binnen alternatieve kaders zijn gesocialiseerd. Wij presenteren onze epistemologische en methodologische aanpak, het proces van dataverzameling (een multiple case-informed community of practice), en de belangrijkste geleerde lessen
