ObjectiveTo explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories.DesignA qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction.SettingCommunity settings and nursing homes in the Netherlands.Participants19 people with dementia, 36 of their informal caregivers and 38 of their professionals (including nurses, daycare employees and case managers).ResultsThe participants’ responses related to three critical points in the decision-making trajectory about daycare: (1) the initial positive or negative expectations of daycare; (2) negotiation about trying out daycare by promoting, resisting or attuning to others; and (3) trying daycare, which resulted in positive or negative reactions from people with dementia and led to a decision. The ways in which care networks proceeded through these three critical points resulted in a typology of participation trajectories, including (1) working together positively toward daycare, (2) bringing conflicting perspectives together toward trying daycare and (3) not reaching commitment to try daycare.ConclusionShared decision making with people with dementia is possible and requires and adapted process of decision making. Our results show that initial preferences based on information alone may change when people with dementia experience daycare. It is important to have a try-out period so that people with dementia can experience daycare without having to decide whether to continue it. Whereas shared decision making in general aims at moving from initial preferences to informed preferences, professionals should focus more on moving from initial preferences to experienced preferences for people with dementia. Professionals can play a crucial role in facilitating the possibilities for a try-out period.
IntroductionBisphosphonates are currently the medical treatment most often used in children with osteogenesis imperfecta (OI). The purpose of this retrospective pre–post study was to evaluate the efficacy of treatment with bisphosphonates. We measured the effect by evaluating the number of outpatient department consultations and operative interventions before and after treatment with bisphosphonates in children with OI.Methods and materialsOutpatient department consultation and operative intervention frequencies before and after treatment with bisphosphonates were registered. Children who had at least 2 years of medical records before treatment and at least 2 years after treatment were used in this study.ResultsOf 118 children who were treated with bisphosphonates, 51 (23 boys and 28 girls) fulfilled the inclusion criteria. Statistical analysis revealed a significant decrease in outpatient department consultations (P < 0.000) and operative intervention (P < 0.003) before and after bisphosphonate treatment.ConclusionThe pre-post design of our study shows a significant reduction of the number of outpatient department consultations and operative interventions in patients with OI after treatment with bisphosphonates.
One of the challenges of palliative care is to honour the personal wishes of culturally diverse patients while meeting 'universal medical relief standards'. Diverging perspectives on good care can result in intercultural negotiations, such as those analysed in this paper between Dutch care professionals and immigrant families with a Turkish and Moroccan background. Fewer tensions are apparent during the burial care phase. This paper outlines the experiences of immigrant families and their Dutch care professionals in the transition from palliative care to burial care. Their narratives highlight how undertakers offer burials that follow the funeral rituals practised in their customers' (predominantly Muslim) home countries and therefore employ bilingual staff to fulfil the specific wishes of the families. Palliative care professionals, on the other hand, tend to follow their Dutch interpretation of 'universal medical relief standards'. The contrast not only reveals cultural diversity, but also different logics of care; while undertakers follow the logic of the market and the logic of family life, health care professionals tend to follow the logics of professionalism and politics.
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