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Identification of a ‘Blue Zone’ in the Netherlands: a genetic, personal, socio-cultural, and environmental profile
No full textBackground and Objectives“Blue Zones” (BZs) are regions with exceptionally high numbers of longevous inhabitants. Several factors have been suggested to promote longevity in BZs, but the evidence generally does not meet scientific quality criteria. We aimed to characterize a municipality as a “relative BZ,” satisfying 3 criteria: compared to other municipalities, more exceptionally longevous inhabitants, a higher life expectancy, and a more stable population.Research Design and MethodsThe population-based Longitudinal Aging Study Amsterdam has been ongoing since 1992 in 11 municipalities across the Netherlands with 3- or 4-yearly measurement waves. Using all available waves, we included 39 genetic, personal, sociocultural, and environmental characteristics.ResultsOne municipality satisfied the 3 BZ criteria. In comparison with participants in other municipalities in the same province and other provinces in the Netherlands, BZ-participants more often had a polygenic risk score linked to longevity, smoked less, consumed less alcohol and more fruit, biked more minutes, did more often paid work, practiced singing more often, attached higher importance to religion, and lived in a more walkable and livable environment. In contrast, BZ-participants had a slower walking speed, more depressive symptoms, felt less purpose in life, had a larger waist circumference, walked and did sports less often, consumed less vegetables, and exchanged less instrumental support. Other indicators of their physical and mental health and social connectedness did not substantially differ from non-BZ-participants.Discussion and ImplicationsRather than clues to healthy aging, our findings suggest factors conducive to longevity regardless of impaired health
Young people as changemakers
No full textHet idee dat jongeren niet toegerust zijn om aan sociale veranderingen mee te werken, is onterecht. Ze hebben wel degelijk veranderkracht en verandermacht, schrijven onderzoekers die in opdracht van Kenniscentrum Ongelijkheid een programma hebben ontwikkeld
'It is important to feel invited’: what patients require when using the Utrecht Symptom Diary–4 Dimensional, a qualitative exploration.
No full textBackground:In palliative care, the Utrecht Symptom Diary – 4 Dimensional (USD-4D), a Dutch-adapted and validated patient-reported outcome measure, supports multidimensional symptom management through identification and monitoring of, as well as dialogue on symptoms and needs. For the USD-4D to optimally support patients’ autonomy, it is essential to know what patients need to use it.Objective:This study aims to identify what patients need when using the USD-4D in clinical palliative care.Design:A generic qualitative design with primary and secondary analyses of semistructured interviews.Methods:Patients ⩾18 years with a life-limiting illness were purposefully recruited within hospice and home care settings if they were in their last year of life as identified by the surprise question. Patients had to be aware of their life-threatening condition. Patients were selected in two tranches. In the first tranche, patients had to have completed the USD-4D at least once. The second tranche consisted of patients who were not familiar with the USD-4D in clinical practice and were interviewed in a previous study on the content validity of the USD-4D. The interviews were transcribed verbatim and were subjected to thematic analysis.Results:Twenty-five patients were included (14 men, ages 44–87). Patients’ needs when using the USD-4D were summarized in three themes: (1) feeling invited, (2) being aware of the purpose and function of the USD-4D, and (3) experiencing a personal and nonjudgmental approach.Conclusion:For patients to optimally benefit from the USD-4D as a supportive measure of their autonomy in clinical palliative care, it is essential that they feel invited to use it. Healthcare providers are tasked with setting the right preconditions for patients to want and to be able to use the USD-4D. For patients, this means healthcare providers should always be attuned to their personal preferences when communicating the purpose and function of the USD-4D and when they enter into dialogue with them
Art in a Caring Society: An Autoethnographic Narrative
No full textThe World Health Organization (WHO) has recently recognized the significance of expressing experiences through artistic expression in promoting health and well-being. Artistic expression allows individuals to also articulate their feelings and concerns nonverbally. Creating and experiencing art has been a significant aspect of my life throughout my struggles with multiple chronic illnesses. I create art for self-care, and to comprehend and capture my emotions nonverbally. Through narrative and reflection on various experiences, I delve into the meaning of art and artistic expression in my personal life and within the context of a caring society. Additionally, my work includes creating drawings and images for others, providing comfort and support, and attending to their needs during difficult times. Creating art with others establishes a meaningful and creatively challenging connection, fostering joy and enabling contact without words about what resonates with us. Creating art with others and sharing this process with distant others in public spaces promotes solidarity and trust, two cornerstones of a caring society, in line with Joan Tronto’s definition of care. Actively promoting access to artistic expression and exchange, particularly in a care context, is a valuable strategy for fostering a caring society that acknowledges the realm of the experiential beyond words
Fostering collaborative moral learning in residential care for people with intellectual disabilities: The role of art and boundary work
No full textConducting participatory action research (PAR) with people with and without intellectual disabilities presents challenges, primarily due to participants’ varying verbal expression and reflective thinking abilities, leading to potential power imbalances and unfair outcomes. This study investigates using the arts to address these issues in a residential care setting. We specifically chose to collaborate with an artist who maintained an autonomous artistic practice on the research site. This collaboration, occurring at the intersection of the arts, academia, and the residential care context, presented new opportunities and challenges, and thus demanding extensive ‘boundary work.’ In this article we address the fieldwork challenges we encountered to deepen the understanding of two interrelated questions: how can the arts stimulate equitable, collaborative moral learning processes between individuals with and without intellectual disabilities? And what kind of boundary work is required to facilitate these processes within the context of residential care for people with intellectual disabilities? This study confirms that the use of the arts can have an emancipatory effect on knowledge production by making abstract questions tangible and offering embodied ways to engage in meaning-making processes. We underscore the moral dimensions of these endeavours. Noticing that embodied reactions depend on others to move beyond the here-and-now, boundary work and a shared problem definition are indispensable. This study stresses that within the context of a residential care setting, boundaries exist not only between the fields of arts and the care organization but also within the care organization itself
How do arts-based communities conceptualise their contribution to social justice for people living with intellectual disabilities? :A scoping review
No full textThis study reports key concepts of arts-based communities (ABCs) regarding their contribution to social justice for people living with intellectual disabilities and provides a foundation for future research. A scoping review was carried out, following the systematic search-strategy approach proposed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. To extract data, a data-charting form for characteristics and topics of included publications was developed. Thirty-three publications were included in the review. Concepts and terminology were synthesised into key concepts.The identified key concepts are: empowerment and self-advocacy; social interaction, belonging and inclusion; awareness and challenging stigma; advocacy for rights and social change; and skills and employment. These concepts can be related to aims of the Convention on the Rights of Persons with Disabilities (CRPD) and to claims in art therapy literature
Historical abuse in Dutch Catholic institutions: An ex ante evaluation of institutional and non-institutional response procedures
No full textWith the disclosure of widespread sexual abuse within the Dutch Roman Catholic Church, victim-survivors demanded justice from Dutch Church authorities and the Dutch state. As conventional approaches, such as criminal and civil law, were deemed to be inept in achieving recognition and repair, new procedures had to be established. The Church initiated several complaint, compensation and mediation procedures. Besides these ‘institutional’ procedures (initiated by the ‘wrongdoer’ itself), a victim-led mediation procedure was developed. This article provides an ex ante evaluation of these varied response procedures in terms of the promise they made to achieve recognition and repair. Their design was assessed through the theoretical lenses of procedural and restorative justice. While the procedural lens shows that there is too little space for the voice of victim-survivors, the restorative lens shows that all responses were too individualistic in design, failing to integrate systemic aspects of the harm done at the institutional, societal and familial levels. These aspects are crucial to addressing the recognition claims at stake
Decision-making in case of an unintended pregnancy: an overview of what is known about this complex process
No full textUnintended pregnancies are a worldwide health issue, faced each year by one in 16 people, and experienced in various ways. In this study we focus on unintended pregnancies that are, at some point, experienced as unwanted because they present the pregnant person with a decision to continue or terminate the pregnancy. The aim of this study is to learn more about the decision-making process, as there is a lack of insights into how people with an unintended pregnancy reach a decision. This is caused by 1) assumptions of rationality in reproductive autonomy and decision-making, 2) the focus on pregnancy outcomes, e.g. decision-certainty and reasons and, 3) the focus on abortion in existing research, excluding 40% of people with an unintended pregnancy who continue the pregnancy. We conducted a narrative literature review to examine what is known about the decision-making process and aim to provide a deeper understanding of how persons with unintended pregnancy come to a decision.Our analysis demonstrates that the decision-making process regarding unintended pregnancy consists of navigating entangled layers, rather than weighing separable elements or factors. The layers that are navigated are both internal and external to the person, in which a ‘sense of knowing’ is essential in the decision-making process. The layers involved and complexity of the decision-making regarding unintended pregnancy show that a rational decision-making frame is inadequate and a more holistic frame is needed to capture this dynamic and personal experience
We have Never Been Latourians!:Religious Pluralism & New Materialism in Bruno Latour’s ‘Terrarism’
Get PDFIn his works on ecological philosophy, Bruno Latour develops an interestingontology. He proposes a new worldview, in which religion is reinterpreted in view of a Gaian philosophy. He extends ‘pluralism’ beyond the anthropocentrism that dominates modern humanism. In his book Facing Gaia Latour includes nonhuman beings in a larger community and works towards a larger concept of eco-humanism. In this paper, I try to reconstruct his position by showing that the philosophical foundation for his interpretation of ontology is to be classified as a form of new materialism. This new interpretation of materialism has postmodernist origins (inspired by Gilles Deleuze), but it is not identical to it, because Latour explicitly distances himself from ‘postmodernism’. He wants to contribute to a ‘positive’ ontology. My point is that Latour’s materialist grounding of ontology, which he tries to elaborate in order to make a religious pluralism possible, obstructs any foundation of transcendence and, finally, congests a pluralistic ecumene, because it renounces to the idea of the ‘whole’ and a unitary principle of being. His ideas on eco-humanism and pluralistic ecumene could gain momentum if we opted for a more holistic and idealistic way of thinking. In my last section I show how this is possible: objective idealism and panentheism are conceived as models that belong together and can offer a viable alternative for modern versions of materialism
'The Ball of Cooperation Rolls on':Some Personal Reflections on My Experiences as a Researcher
No full textPeople with disabilities are increasingly actively involved within research projects. For many of them this is a temporary role, but some work on longer-term projects and even build a career out of it. This is the case for the first author of this paper. He has worked as a researcher for almost six years. He is involved in various projects, all highly diverse in terms of subject, design, scope and collaboration with fellow researchers. In this paper, he looks back on his experiences in recent years. Together with colleagues, he reflects on his contribution to the various projects, his own development as a researcher and the impact of the work on his personal life. He finds that the essence of the motto ‘Nothing about us, without us’ has become increasingly intertwined with his life and identity through his work