The American journal of hospice & palliative care
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Am J Hosp Palliat Care · Jun 2018
Randomized Controlled Trial Multicenter StudyA Randomized Controlled Trial of Strategies to Improve Family Members' Preparedness for Surrogate Decision-Making.
To evaluate 2 strategies for preparing family members for surrogate decision-making. ⋯ The disconnect between confidence and performance raises questions about how to prepare family members to be surrogate decision-makers.
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Am J Hosp Palliat Care · Jan 2005
Multicenter StudyEnd-of-life care: perspectives of family members of deceased patients.
This study was undertaken to determine the opinions of family members of deceased patients regarding end-of-life care. This multisite cross-sectional survey was administered to 969 volunteer participants during 1997 to 2000. Eligible participants included immediate family members of deceased patients at five local institutions in a regional health system. ⋯ Respondents were more satisfied with communication from nursing staff (88 percent) than physicians' communication (78 percent, p < 0.001, Bowker's test). Respondents indicated higher overall satisfaction with nursing (90 percent) and pastoral care (87 percent), than with physician care (81 percent, p < 0.001 and p = 0.006, Bowker's test). A unique survey instrument can be used to measure family perceptions and opinions regarding end-of-life care.
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Am J Hosp Palliat Care · Jan 2002
Multicenter StudyAssessment of pain and health-related quality of life in slowly progressive neuromuscular disease.
Few studies have examined the effect of pain on the quality of life of individuals with slowly progressive neuromuscular disease (NMD). The purpose of this study was to determine the frequency and extent to which subjects with slowly progressive NMD report pain and the association between pain and health-related quality of life in persons with NMD. The study design was a descriptive, nonexperimental survey. ⋯ There was a significant correlation between increased pain and lower levels of general health, vitality, social function, and physical role. Pain was moderately associated with increased fatigue, inability to cope adequately with stress, and sleep disturbance. In conclusion, with the exception of adult SMA, the frequency and severity of pain reported in slowly progressive NMDs was significant.