Articles: caregivers.
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Multicenter Study Comparative Study
The experiences of close persons caring for people with chronic kidney disease stage 5 on conservative kidney management: contested discourses of ageing.
Chronic kidney disease stage 5 is a global health challenge in the context of population ageing across the world. The range of treatment options available to patients at all ages has increased and includes transplantation and dialysis. However, these options are often seen as inappropriate for older frailer patients who are now offered the option of conservative kidney management, which is presented as a non-invasive alternative to dialysis, involving symptom management and addressing psychosocial needs. ⋯ In the context of chronic kidney disease stage 5, more patients are being dialysed at older ages, but conservative kidney management is being advanced as a better option than dialysis in terms of quality of life and experience. However, in doing so, conservative kidney management implicitly draws on a notion of older age that echoes natural ageing rather than advocate a more interventionist approach. The role of discourses of ageing in the provision of treatments for conservative kidney management has not previously been acknowledged, and this article addresses this gap.
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Multicenter Study Observational Study
Impact of acute bleeding on daily activities of patients with congenital hemophilia with inhibitors and their caregivers and families: observations from the Dosing Observational Study in Hemophilia (DOSE).
There is limited understanding of the effects of bleeding episodes on the daily lives of patients with congenital hemophilia with inhibitors and their caregivers. This analysis of the Dosing Observational Study in Hemophilia examined the impact of acute bleeding episodes on work, school, and family activities. ⋯ This study demonstrated that in hemophilia with inhibitors, bleeding episodes interfere with the daily activities of patients and their caregivers. Furthermore, documenting only lost days underestimated the impact of bleeding episodes because of the high percentage of days without planned work or school.
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J Pain Symptom Manage · Sep 2014
Multicenter StudyThe influence of patients' quality of life at the end of life on bereaved caregivers' suicidal ideation.
Recent studies have shown that patients' quality of life at the end of life (QOL@EOL) affects the psychosocial adjustment of bereaved family caregivers. ⋯ The more caregivers perceive their loved ones' QOL@EOL to be poor, the greater their risk for suicidal ideation in bereavement over and above prior levels of suicidal ideation. Caregivers of patients who have poor QOL@EOL appear to be a group of caregivers to target for reduction of suicidal risk.
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Multicenter Study
The impact of the nocturnal disabilities of Parkinson's disease on caregivers' burden: implications for interventions.
Parkinson's disease (PD) imposes a burden on those who care for the person afflicted. The objective of this study was to assess and analyze the main determinants of caregivers' burden, especially the nocturnal manifestations of PD. This multi-center, national, cross-sectional study included 89 patient-caregiver pairs. ⋯ Moderate association was found on MPDSS item 14 (r = 0.38) and NADCS akinesia score (r = 0.37). Patients' anxiety, nocturnal akinesia and the feeling of tiredness and sleepiness upon awakening in the morning were independent predictors of caregivers' burden (adjusted R2 = 0.46). Based on these findings, treatment of early mood symptoms of the patients and caregivers at risk may be helpful for the effective management of PD and it is also important to have well-designed psycho-educational and multicomponent interventions in the community for caregivers of persons with PD.
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Multicenter Study
The Understanding of Terminal Cancer and Its Relationship with Attitudes toward End-of-Life Care Issues.
Although terminal cancer is a widely used term, its meaning varies, which may lead to different attitudes toward end-of-life issues. The study was conducted to investigate differences in the understanding of terminal cancer and determine the relationship between this understanding and attitudes toward end-of-life issues. ⋯ The understanding of terminal cancer varied among the 4 participant groups. It was associated with different preferences regarding end-of-life issues. Standardization of these terms is needed to better understand end-of-life care.