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"Eenzaamheid is een collectieve verantwoordelijkheid"
Get PDFDe Nederlandse emeritus hoogleraar Anja Machielse onderzoekt al 30 jaar sociale relaties en eenzaamheid. In haar recente afscheidsrede brak ze een lans voor zorgzame buurten en het kleine gebaar. “Veerkracht en sociale weerbaarheid zijn relationele begrippen. Je mag de verantwoordelijkheid voor sociaal isolement niet alleen bij het individu leggen.
How to provide existential and spiritual support to people with mild to moderate dementia and their loved ones. A pilot study.
No full textThis dataset is for replication and follow-up research purposes. It consists of all key documents from data collection to data analysis of the research project. See the readme document for the relevant procedure and document description
Perspectives on the essential skills of healthcare decision making in children and adolescents with intellectual disability
No full textBackground: Involvement in healthcare decisions is associated with better health outcomes for patients. For children and adolescents with intellectual disability, parents and healthcare professionals need to balance listening to a child’s wishes with the responsibility of keeping them safe. However, there is a scarcity of literature evaluating how to effectively involve them in decision making. In this context, we review the concept of health literacy, focusing on the skills of healthcare decision making for children and adolescents with intellectual disability. Methods: We describe the concept of health literacy and models explaining shared decision making (individuals and healthcare professionals collaborate in decision making process) and supported decision making (when a trusted person supports the individual to collaborate with the healthcare professional in the decision-making process), and a rapid review of the literature evaluating their efficacy. We discuss healthcare decision making for children and adolescents with intellectual disability in the context of relevant recommendations from the recent Disability Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability in Australia. Results: Health literacy skills enable individuals to access, understand, appraise, remember and use health information and services. Shared decision making has been described for children with chronic conditions and supported decision making for adults with intellectual disability. Decision-making contributes to how individuals appraise and use healthcare. The rapid review found very limited evidence of outcomes where children and adolescents with intellectual disability have been supported to contribute to their healthcare decisions. Recommendations from the Disability Royal Commission highlight current needs for greater efforts to support and build the capacity of individuals with disability to be involved in the decisions that affect their life, including healthcare decision making. Conclusions: Existing rights frameworks and healthcare standards confirm the importance of providing all people with the opportunities to learn and practise health literacy skills including decision making. There is little literature examining interventions for healthcare decision making for children with intellectual disability. Childhood is a critical time for the development of skills and autonomy. Evidence for how children and adolescents with intellectual disability can learn and practice healthcare decision-making skills in preparation for adulthood is needed to reduce inequities in their autonomy
Caregiver-child communication on parental loss in the context of the AIDS epidemic in Namibia
No full textPatient perspectives and experiences with psilocybin treatment for treatment-resistant depression: a qualitative study.
No full textPsilocybin is the most researched classic psychedelic for Treatment-Resistant Depression (TRD). While optimizing set and setting are considered essential for efficacy and safety, patient perspectives on these aspects have rarely been investigated. To address this knowledge gap, the current paper explored the experiences of 11 TRD patients (8 women, 3 men) participating in a double-blind randomized clinical trial with a single session of oral (1, 10 or 25 mg) psilocybin treatment. After qualitative analysis, three major themes were identified: (1) challenges with trust-building and expectation management; (2) navigating the experience; and (3) the need for a more comprehensive treatment. Subthemes of the first theme include a general distrust in mental healthcare, trust in study therapists, limited time for preparation, and managing expectations. The second theme included the following subthemes: trusting to surrender, profound and overwhelming experiences, and music as a guide. The third theme addressed a desire for multiple psilocybin sessions, and challenges with sensemaking. Patients’ perspectives provided important insights into potential optimization of psilocybin treatment of TRD, including individualized preparation, investment in trust-building, offering additional psilocybin sessions, providing access to sustained (psycho)therapy with trusted therapists, and personalizing treatment approaches, which may also enhance real-world adaption of these treatments
Eenzaamheid als collectieve aangelegenheid:Versterk de sociale verbanden
No full textMensen met weinig zelfvertrouwen en zonder een ‘robuuste identiteit' voldoen moeilijker aan de verwachtingen van de maatschappij. Zij hebben daardoor meer kans op problematische eenzaamheid. Om eenzaamheid tegen te gaan, moeten we niet alleen aandacht schenken aan individuele kwetsbaarheden, maar ook aan de sociale omgeving, zegt Anja Machielse
'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
Spirituality as a Predictor of Well-Being, Mental Distress or Both:A Four-Week Follow-Up Study in a Sample of Dutch and Belgian Adults
No full textIn general, studies of spirituality show positive associations with measures of well-being, but less is known about the possible role of mental distress in this association. Following the two-continua model of mental health, the current quantitative four-week follow-up study examines how spirituality is associated with well-being and mental distress. Spirituality is measured using the Spirituality Attitude and Interest List questionnaire (SAIL), well-being by the Dutch Mental Health Continuum-Short Form (MHCSF-SF), and mental distress by the Symptom Questionnaire (SQ-48). At baseline, 874 adults from the Netherlands and Belgium completed the online questionnaire; four weeks later, 560 participants completed the follow-up questionnaire. Multiple regression analyses showed that spirituality at baseline, and in particular the subscale on ‘meaning in life,’ predicted higher well-being scores at follow-up after adjustment for baseline well-being scores. Spirituality also predicted changes in mental distress scores, in particular on the subscales of trust and transcendent experience. However, these associations were in opposite directions. Trust was associated with a small decrease in mental distress over time and transcendent experience was associated with a small increase in mental distress over time. The results confirm the importance of meaning in life, trust, and transcendent experience as elements of mental health
White spots in democratic renewal:A literature review of the design of democratic renewals
No full textHet idee dat de representatieve democratie reparatie verdient wordt breed gedragen. Actieve burgers, politici en ook ambtenaren tonen daarbij telkens opnieuw grote inventiviteit, denk aan de ‘G1000’ in België, de invoering (en afschaffing) van het raadgevend referendum in Nederland en het Franse Klimaat Beraad. Dat idee is echter niet van gisteren. Zoals Frank Hendriks stelt in zijn recente boek over democratische vernieuwing staat de huidige vernieuwingsgolf in een lange hervormingstraditie (Hendriks, 2023: p. xxvi). De bibliotheek over experimenten en meer geïnstitutionaliseerde democratische vernieuwingen dijt gestaag uit. De hoop is telkens dat democratische vernieuwingen kunnen bijdragen aan het verbeteren van vertrouwen in instituties, het vertrouwen van burgers in zichzelf en elkaar, en aan het verhogen van draagvlak voor ingrijpende beslissingen. Als recente voorbeelden van maatschappelijke uitdagingen waar vernieuwingen misschien de oplossing voor zijn, gelden de laatste jaren de opkomst van populisme, de toenemende polarisatie en de klimaatverandering. We zien om ons heen dat de resultaten gemengd zijn, dat de pogingen om daar met meer of nieuwe inspraak iets aan te veranderen soms slagen en soms niet. Is het niet weer eens tijd voor tussentijdse lessen? Welke ontwerpfactoren zijn goed in beeld, en welke factoren zijn nog witte vlekken: we weten dat ze belangrijk zijn, maar we weten nog niet goed hoe we ze vorm moeten geven. Het was dus een welkome vraag van het wetenschappelijke platform Charge (gelieerd aan de politieke partij Volt), om literatuuronderzoek te doen naar “de recente ontwikkelingen op het gebied van democratische vernieuwing en hoe die van belang [kunnen] zijn voor burgers in Europa en in Nederland?” (Charge onderzoeksvoorstel 2023).In dit rapport leggen we eerst uit hoe we op die vraag ingingen en bespreken we daarna de bevindingen en de gaten in de literatuur. En passant slaan we een brug tussen het debat over democratische vernieuwing en het opkomende rechts-populisme in Europa. Daarna doen we enkele concrete aanbevelingen voor het opzetten van democratische vernieuwingen
