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Experience or perception: What healthcare providers need when using the Utrecht Symptom Diary—4 Dimensional:A mixed-methods study
No full textBackground:The Utrecht Symptom Diary—4 Dimensional (USD-4D), an adaptation of the Edmonton Symptom Assessment System, supports healthcare providers (HCPs) in identifying, monitoring, and exploring multidimensional symptoms and needs of patients in the palliative phase. For the USD-4D to be optimally implemented in clinical palliative care, it is essential to know and understand the needs of HCPs when using it.Objective:To identify and interpret the needs of HCPs when using the USD-4D in clinical palliative care, operationalized as perceived facilitators and barriers.Design:An explanatory mixed-methods study with a sequential design.Methods:Data were collected between October 2019 and September 2020. In phase I, quantitative data were collected through a survey targeting Dutch HCPs working in palliative care. Facilitators were identified as items answered positively by ⩾80% of participants, while barriers were identified as items answered negatively by ⩾20% of participants. In phase II, these identified facilitators and barriers were explored in depth through mixed composition focus groups. The Capability-Opportunity-Motivation-Behavior (COM-B) model was utilized to contextualize and interpret the perceived facilitators and barriers.Results:A total of 122 HCPs completed the survey, with 95% of the respondents being women with a mean age of 48 years and 72% being nurses. Additionally, 53% of the respondents had no prior experience with the USD-4D. In phase II, 21 HCPs participated in focus groups. 95% of the participants were women with a mean age of 49 years and 67% being nurses. HCPs pinpointed facilitators primarily related to the potential benefits of the USD-4D for daily patient care. Conversely, the identified barriers included issues related to HCPs’ behavior, knowledge gaps, uncertainty regarding their abilities and attitudes toward the USD-4D, and technical obstacles.Conclusion:Facilitators and barriers across all facets of the COM-B model were recognized, with a notable emphasis on motivational barriers. It should be acknowledged that facilitators and barriers can evolve throughout the implementation process, underscoring the importance of viewing implementation and integration as fluid and continuous endeavors. Facilitators and barriers are closely linked to HCPs’ reflective capacities, emphasizing the need for tailored intervention strategies that align with different stages of USD-4D implementation
Geschiedenis en totstandkoming van de zorgstandaard Zingeving in de psychische hulpverlening.:Op zoek naar onderzoeksvragen
No full textMicro-disruptions and struggles for success in Beirut
No full textMiddle-Eastern contexts where war, corruption, and oppressive regimes compromise and undermine wellbeing, security and basic freedoms, do not give much hope or outlook for improvement. Even against massive and protracted protests, illegitimate power endures. Some local initiatives “disrupt” these hostile and dehumanizing environments by fostering communities of refuge, care, hope and empowerment. In my Beirut-based research I employ a micro-interactional and emotion-focused sociology to dissect the innerworkings of such communities. Research settings include NGO programs, schools, martial arts gyms, basketball courts, and street corners. They contain interaction rituals, each with their own rhythms, focus, shared mood, and physical deployment. These dynamics chart young people’s disparate paths of development.In different constructive interaction rituals, young people experience three components of success: temporary boosts of positivity, a more durable elevation over difficult circumstances, and grounding in encouraging networks and stabilizing emotional states. These components in varying constellations have important restorative effects for young people suffering from debilitating and discouraging interactions. Concretely, these experiences empower young people’s efforts in education, labor and personal development. I pay substantial attention to youth workers and other adults’ contributions to young people’s struggles for success.Local initiatives can become networked “pockets of resistance, creating multiple sites of micro disruption” as sociologist Erika Summers-Effler puts it. Without outright challenging prevailing macro-structures and regimes, these initiatives provide positive counterweights for overwhelming hardship. The “horizontal” (local, peer-based) multiplication can become a grassroots change, potentially influencing “vertical” power structures. This research is an ongoing exploration of hope in contexts of despair.<br/
Otherness as a Tension-Filled Relationship:The Potential of Experimental-Relational Spaces of Encounter
No full textSinds 2010 ben ik betrokken bij een mix van etnografisch, narratief en fenomenologisch onderzoek, voornamelijk gericht op complexe zorgpraktijken rondom mensen met een ernstige verstandelijke beperking. In deze samenwerkingsprojecten proberen we – in alle bescheidenheid – meer ruimte te creëren voor interpersoonlijke uitwisseling en verbondenheid, om zo de levenskwaliteit van alle betrokkenen te verhogen. We besteden altijd veel tijd op microniveau, omdat dit ons helpt een rijke, gelaagde kijk te krijgen op de geleefde ervaring en op wat er op het spel staat voor iedereen die betrokken is. Door dit te doen proberen we inzichten en lessen te destilleren voor de voortdurende dialoog tussen belanghebbenden uit beleid, praktijk en onderzoek – uitgaande van de leefwerelden van mensen die vaak het minst gehoord en erkend worden. De afgelopen 14 jaar hebben we verschillende ontwerpen en strategieën ontwikkeld en toegepast, die ik graag vat onder de noemer ‘experimenteel-relationele ontmoetingsruimte’ (Bos & Abma 2021).In deze tekst deel ik enkele van de belangrijkste lessen die ik onderweg heb geleerd. Eerst zal ik reflecteren op een paar opvallende voorbeelden uit mijn promotieonderzoek naar ontmoetingen tussen mensen met en mensen zonder ernstige verstandelijke beperking in omgekeerde-integratiesettingen. Ik doe dit voornamelijk om te illustreren hoe ik me bewust werd van de noodzaak van een meer ontvankelijke, responsieve, reflectieve en avontuurlijke benadering van interacties met mensen met een ernstige verstandelijke beperking, en waarom ik vastbesloten werd om daaraan bij te dragen in mijn onderzoek.Vervolgens zal ik uitleggen wat ik bedoel met ‘experimenteel-relationele ontmoetingsruimte’ en hoe de onderliggende waarden inspiratie kunnen bieden voor het dagelijks leven in zorg- en onderzoekspraktijken. Ten slotte zal ik kort enkele inzichten uit recente projecten delen om het veelbelovende potentieel van een expliciete betrokkenheid bij experimenteel-relationele ontmoetingsruimtes te illustreren
Boekbespreking: Rosa, Hartmut. 2023. Democratie vraagt om religie. Over een bijzondere resonantierelatie.
No full textCollaboration with patients' family members and representatives:legal perspective and barriers in clinical practice
No full textBACKGROUND: In the Compulsory Mental Health Care Act (Wvggz) family members and representatives have a more central position. However, in clinical practice there is a lack of collaboration.AIM: Giving an overview of the relevant legal texts and analyzing possible reasons for the lack of collaboration.METHOD: Discussion of relevant legal texts and publications.RESULTS: The aim of the Compulsory Mental Health Care Act is to enhance the patients' rights and rights of their family. In clinical practice it is difficult to find a good collaboration. One problem is that patients' competence may fluctuate over time. And also confidentiality is seen as an important barrier. Family members also experience tension by fulfilling different roles, especially when they are representative.CONCLUSION: Although the Compulsory Mental Health Care Act gives a clear framework for collaboration with family members, the application is complex in clinical practice. The formal possibilities can only be applied, when relations with both patients and their family members are built in trust.</p
“A Spider on Your Shoulder”: Workplace Sexual Harassment Through a Narrative Lens
No full textWe theorize workplace sexual harassment in terms of narrative. Two case studies – one at Ford Motor Company plants, the other involving former New York State governor Andrew Cuomo – ground thematic analysis of victims’ accounts of experiences of harassment and commentary on their capacity to give accounts. We identify six challenges - features of workplace harassment and its social context - that victims face in narrating harassment, which facilitate abuse and undermine redress: (1) ambiguity of meaning; (2) stepwise harassment; (3) coerced co-participation; (4) admonitions/mechanisms against telling; (5) competing narrative constructions; and (6) storyteller marginalization. Anti-harassment efforts should target these challenges