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How to study marginalized history: the case of ‘citizenship education’ in historical social movements
No full textThe Impact of Hospice Care Structures on Care Processes: A Retrospective Cohort Study
No full textBackground: Palliative care is subject to substantial variations in care, which may be shaped through adapting the organisational structures through which care is provided. Whilst the goal of these structures is to improve patient care, there is a lack of evidence regarding their effect on care processes and patient outcomes. Aims: This study aims to describe the relationship between care structures and the quantity and domains of care processes in hospice care. Design: Retrospective cohort study. Settings/Participants: Data were collected from Dutch hospice patient’s clinical records and hospice surveys, detailing hospice structures, patient clinical characteristics and care processes. Results: 662 patients were included from 42 hospices, mean age 76.1 years. Hospices were categorised according to their care structures - structured clinical documentation and multidisciplinary meetings. Patients receiving care in hospices with structured multidisciplinary meetings had an increased quantity of documented care processes per patient on admission through identification (median 4 vs 3, P < .001), medication (2 vs 1, P = .004) and non-medication (1 vs 0, P < .001) interventions, monitoring (2 vs 1, P < .001) and evaluation (0 vs 0, P = .014), and prior to death. Similar increases were identified for patients who received care in hospices with structured documentation upon admission, but these changes were not consistent prior to death. Conclusions: This study details that the care structures of documentation and multidisciplinary meetings are associated with increased quantity and breadth of documentation of care processes in hospice care. Employing these existing structures may result in improvements in the documentation of patient care processes, and thus better communication around patient care
Experiences and needs of residents with dementia in relocating to an innovative living arrangement within long-term care:A qualitative study
No full textDuring the last decade, an increasing number of care organizations have chosen to rebuild or build a new care facility to provide better person-environments for residents with dementia. This has inevitably led to an increase in relocations. This study investigated how residents with dementia experienced a relocation from a regular nursing home to an innovative living arrangement. A qualitative study was performed, using semi-structured interviews and observations. Two nursing homes offering 24 h care to residents with psychogeriatric symptoms that planned a relocation to an innovative living arrangement were selected. Sixteen residents were included. Five themes from the data described what was of importance to residents when moving, including (1) the physical environment of the new location, (2) the belongings of residents, (3) feeling at home, (4) the importance of social contact when relocating, and (5) the need to be engaged in daily life. This study found that the residents were not actively involved in the relocation process, despite the clear desire they expressed to be involved and of importance. As the residents with dementia were able to express what was important to them in this study, relocation processes should focus more on involving such residents and incorporating them within relocation processes
Decolonisation of education through citizen science: Slow science, not slow violence.:The case study Diamonds on the Soles of Their Feet
No full textCitizen science projects are vulnerable to top-down directivity, and driven by assumptions of one-directional ambitions with regard to capacity building and knowledge production. Through the story of Ruth, we discuss how deep-seated legacies of inequality influence the politics of knowledge and explore what we, involved in citizen science projects, could learn from the politics of knowledge as it emerges from decolonisation struggles—particularly as manifested within the academy. Most universities are orientated around Western knowledge regimes that mute many other ways of knowing and ordering the world. Significant inroads have been made when writing on decolonising education but less is known about the effects of the colonisation of state institutions and the disturbances, interferences, and disruptions to organising, sharing, and creating knowledge in public spheres outside of these same universities. These disturbances affect the personal and collective histories of people so that when they are part of research linked to the university, their everyday lives become enmeshed with institutional hegemonies. Research is not dissociated from its deeply entrenched colonial roots. If decolonisation means going deeper into the legitimacy of knowledge and who and how this is being defined, then this must include the process of producing that knowledge outside the bastions of power
Gerotranscendence as a new perspective on life?:A qualitative study among the oldest elderly in a nursing home
No full textIn de gerontologie bestaan meerdere theorieën over goed ouder worden. Eén daarvan heet gerotranscendentie. Op latere leeftijd kan een verandering in levensvisie optreden, waarbij een transcendente en kosmische kijk op het leven ontstaat, en daarbij meer levensvoldoening. In dit empirische onderzoek onder twintig bewoners van een verpleeghuis (77 - 105 jaar) is gekeken of zij kenmerken hiervan bij zichzelf herkennen
Exit, loyalty and focus:Dutch social workers’ responses to swing-of-the-pendulum policies
No full textMany social workers are confronted with tidal waves – cyclical or swing-of-the-pendulum policies – in the course of their career. Policies oscillate between harsh and lenient, emphasising safety and family unity, equality and tailor-made arrangements. In addition, social work organisations are being organised and reorganised in recurrent modes as well: from large-scale to small-scale, with or without team coordinators, from a generalised to a specialised division of tasks. In this article, we pose the question how social workers respond to cyclical changes in policy and management. We use a dataset of 35 interviews with Dutch social workers – trained in the early 1990s, early 2000s, and early 2010s – about their careers. We found that some social workers respond to cyclical changes in policy and management by exiting their profession or contemplating exit. Others adjusted to the policy circles and management fashions, sometimes grudgingly, sometimes because they endorsed the new policies, and sometimes because they just went along. Yet other social workers practised focus, that is: they sought refuge in the core of their profession, delivering the best possible social work, ignoring the tidal waves as far as possible. The latter response seems to be based on a strong professional identit
“I like it when you feel you can discuss things”::A qualitative study on sharing medical care for children with profound intellectual and multiple disabilities.
No full textIn the Netherlands, many parents of children with profound intellectual and multiple disabilities care for their children at home. Little is known about how parents and involved healthcare professionals share and align medical care for these children. This study aims to contribute to a better understanding of the dimensions that affect how medical care is shared and how healthcare professionals can align care with family needs. The study design was inspired by grounded theory. We analyzed in-depth interviews with 25 Dutch parents. The analysis identified five dimensions affecting how parents and professionals shared and aligned medical care: fragility, planned care, irregularities, interactions with providers, and parents’ choices. We recognized three distinctive ways these dimensions interplayed, characterizing scenarios of sharing care: dependent care, dialogical care, and autonomous care. The findings illuminated that parental distress decreased when parents could communicate about what they considered important for their child and family and its implications for sharing care. Parents developed their capacity to manage medical care and often evolved in their thinking about the quality of care and life. Sometimes this evolution was due to struggles with the care provided by professionals. Therefore, healthcare professionals may need to broaden the relational work of shared decision-making to include the sharing of medical care. Arrangements need to be continually reassessed as changes in the child’s and family’s situation trigger changes in preferred patterns of sharing care. Commitment to parents’ autonomy implies that healthcare professionals should be attentive to the parents’ emotional and relational needs
Introduction of Spiritual Psychotherapy for Inpatient, Residential, and Intensive Treatment (SPIRIT) in The Netherlands: Translation and Adaptation of a Psychotherapy Protocol for Mental Health Care
No full textThe perceived value of the integration of spirituality and religion (SR) in mental health care is growing. This study aimed to adapt an SR intervention developed in the USA (SPIRIT) for use in the Netherlands and to explore its applicability. Employing a participatory practice-based action research design, professionals, clients, and an advisory board collaborated in iterative cycles of translation, adaptation, discussion, and testing. The ongoing interfaith dialog during the adaptation process broadened the perspectives incorporated into the existing handouts. We added the term “meaning” (M) alongside SR to accommodate patients who do not identify with religion or spirituality. Additionally, several handouts were added to the original protocol: autonomy, responsibility, and liberty; loneliness and belonging; inspiring persons in the past and present; and grief and loss. Moreover, the existing handout on sacred verses was expanded to encompass versions from various outlooks on life: philosophical/humanistic, Judeo-Christian, Buddhist, Islamic, and Hindu. Finally, layout modifications and diverse exercise formats were introduced. A qualitative examination revealed that the adapted SPIRIT protocol was well received by professionals and patients, and quantitative studies on its applicability and usefulness are recommended