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Go With the FLOo – Authentic Voices in Research With Families Where One or More Parents Have an Intellectual Disability
No full textIn this chapter, we discuss the merits and challenges of organic communication within an inclusive, iterative research design through our research project ‘Improving the quality of life of families with parents with intellectual disabilities (IDs) and their children (,12 years) by means of assistive robotics’. We will discuss the research process, its key steps and preliminary findings, as well as how inclusivity of participants was taken along throughout this process. The links between research design, designers and project participants are explored and reflected on. Our positions as researchers within the research process are also reflected upon. We will additionally address the implications of our research for the broader field of inclusive design for assistive robotics and the creative methodologies employed and tailored to the needs of families headed by parents with an ID and their children. In this, we keep a close eye on the difficulties such families face within the context of our research project. Lastly, we reflect on several key markers of collaboration within marginalised communities we encountered in our research
Discussing Humanism Part 2
No full textThis is the editorial text of an issue on humanism in Journal of Humanistic Studies Waardenwer
Finding One's Way Through the Gender Expanse:Examining the Use of Metaphors in Gender-Affirming Care as a Step Toward More Inclusive Spiritual Care Practices
No full textChaplains can play a unique role in providing care for trans and gender-diverse (TGD) people by addressing their spiritual needs. However, spiritual care for TGD individuals may fail to be inclusive in at least three ways: spiritual care may focus solely on religious TGD people, on a limited part of the whole range of gender identities, or on a specific route toward gender affirmation. In this article, the aim is to develop an inclusive perspective on spiritual care for TGD people. To that end, inspired by work by Susan Sontag, we examine spiritual care for TGD individuals through the philosophical lens of social imaginaries, focussing particularly on metaphors, tracing how metaphors used in care for TGD people have changed over time. We elaborate on the potential of the metaphor of “orientation in gender-expansive space,” based on queer theory and literature about worldview-inclusive chaplaincy, for envisioning an inclusive approach to gender-affirming spiritual care
‘How the self as a whole relates to the cosmos as a whole’
No full textPsychiater, psychotherapeut en theoloog Piet Verhagen is een evenwichtskunstenaar. Al decennia overbrugt hij op allerlei manieren de afstand tussen psychiatrie en religie. Dat wil zeggen tussen – enerzijds - het wetenschappelijk vakdomein van de psychiatrie en psychotherapie en - anderzijds - de wetenschappelijke reflectie op levensbeschouwing en met name de persoonlijke beleving daarvan. Hij benut daarbij al het wetenschappelijk materiaal dat hij maar tegenkomt: theologen en filosofen van weleer, de overvloed aan empirisch onderzoek, nationale en internationale discussiefora van vakgenoten, visiedocumenten, en filosofen van vandaag de dag. Piet houdt goed contact met de tijdgeest. Zodra Piet leest en denkt slaat hij ook aan het schrijven. Zo is een heel vlechtwerk ontstaan van lijnen die hij trekt tussen de twee domeinen. Voor het ‘religiedomein’ gebruikt hij ook termen als spiritualiteit en zingeving. In zijn recentere werk ijvert hij ook voor het eigene van religie voor ieder mens: het daadwerkelijk spirituele, hoe dat voor iemand telt en hoe dat blijkt in het dagelijks leven. Lived religion. Deze lived religion schakelt hij aan het onderkennen van diversiteit en daarmee aan het uitstellen van het oordeel van – bijvoorbeeld – hulpverleners. Dit lijkt makkelijker gezegd dan gedaan. In het huidige tijdsgewricht is tolerantie naar andersdenkenden immers geen vanzelfsprekendheid. Ik vind het knap dat Piet in zijn enorme vlechtwerk arriveert bij een dergelijke kernachtig aanbeveling voor ggz-werknemers: pas op met je oordeel over levensbeschouwing. In deze bijdrage sta ik eerst stil bij een van mooiste definities die ik ken over spiritualiteit en die we aan Piet te danken hebben. Daarna bespreek ik enkele punten die mij opvielen bij nadere lezing van zijn artikel
'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
Sports, games and exercise in Social Work
No full textA chapter on usefulness and cautions for how to use sports in social work practice. Sections deal with: - The physical commitment and the social character of sports. Together, these can be a strong force for positive experiences and changes (paragraph 2).- The local fields of influence with their possibilities, limitations and temptations in which sports initiatives can acquire different meanings (paragraph 3).- Connecting with people and their environments, with positive appreciation for their practices and cultures regarding sports and exercise. Working on partnership and equality in the development of sports arrangement
Hospice Care Access: a national cohort study.
No full textObjectives Hospice care in the Netherlands is provided in three different types of hospice facilities: volunteer-driven hospices (VDH), standalone hospices (SAHs) and hospice unit nursing homes (HU). The organisational structures range from care directed by trained volunteers in VDH to care provided by multiprofessional teams in SAH and HU units. This study aims to characterise the patient populations who access Dutch hospices and describe the patient profiles in different hospice types. Methods A retrospective cohort study using clinical records of adult hospice inpatients in 2017–2018 from a random national sample of hospices. Results In total 803 patients were included from 51 hospices, mean age 76.1 (SD 12.4). 78% of patients had a primary diagnosis of cancer, 3% identified as non-Dutch cultural background and 17% were disorientated on admission. At admission, all patients were perceived to have physical needs. Psychological needs were reported in 37%, 36% and 34%, social needs by 53%, 52% and 62%, and existential needs by 23%, 30% and 18% of patients in VDH, SAH, HU units, respectively. 24%, 29% and 27% of patients from VDHs, SAHs and HUs had care needs in three dimensions, and 4%, 6% and 3% in all four dimensions. Conclusions People who access Dutch hospices predominantly have cancer, and have a range of physical, psychological, social and existential needs, without substantial differences between hospice types. Patients with non-malignant disease and non-Dutch cultural backgrounds are less likely to access hospice care, and future policy would ideally focus on facilitating their involvement
Coalitievorming op provinciaal niveau in een gefragmenteerd politiek landschap
No full textEen verkiezingsoverwinning is nog geen garantie op een plek in het bestuurscollege van een provincie, zo laten populistische partijen als SP, PVV en FVD zien: na hun respectievelijke verkiezingsoverwinningen in 2007, 2011 en 2019 hebben ze nauwelijks bestuurszetels bemachtigd. In de jaren dat deze partijen succesvol zijn, zien we dan ook weinig afspiegelingscolleges – colleges waar de zetels van gedeputeerde staten proportioneel verdeeld zijn op basis van de zetels van het college. In dit artikel wordt coalitievorming op provinciaal niveau bestudeerd door vast te stellen of sprake is van een afspiegelingscollege of een minimaal winnende coalitie. We doen dit voor alle verkiezingsjaren tussen 2007 en 2023. De data laten zien dat de opkomst van populistische partijen vaak leidt tot een afname van afspiegelingscolleges, terwijl de minimaal winnende coalities toenemen.<br/
