Nowotny Monika, Dachenhausen Alexandra, Stastny Peter, Zidek Thomas, Brainin Michael
Zentrum für Postgraduale Studien der Neurowissenschaften, Donau-Universität Krems, Donauklinikum, Krems, Osterreich.
Wien Med Wochenschr. 2004 Dec;154(23-24):577-83. doi: 10.1007/s10354-004-0130-8.
The active role (participation) that patients with chronic conditions are able to achieve has increasingly been recognised as a measure for the effectiveness of prevention- and rehabilitation strategies. An empowerment scale is an especially effective instrument for measuring social participation, and was applied to stroke patients in neurological rehabilitation for the first time. 26 stroke survivors and 26 informal carers, who participated in self-help groups in Lower Austria, were surveyed. The mean age was 63.9 (+/- 10.4) (stroke survivors) and 61.9 (+/- 9.6) years (informal carers). The mean duration of disease was 7.3 (+/- 3.2) years and the mean length of self-help group participation approximately 4 years. Every other stroke survivor and every fifth informal carer had to give up their professional life because of the stroke. Financial burden, reduction of vacations and social activities was found for both groups. Informal carers more frequently reported an increased fear of a relapse and generally of the future. One third of the stroke survivors had insomnia, depression, and nervousness. Reduced mobility, memory impairment, and increased sensitivity to temperature-changes were seen as the largest burdens. In spite of the large overlap in many domains of empowerment- and quality-of-life measures, empowerment measures also seem to reflect aspects of social participation. Therefore, measures of empowerment should be included in long-term outcome measurements following stroke.
慢性病患者能够发挥的积极作用(参与)日益被视为预防和康复策略有效性的一项衡量标准。赋权量表是衡量社会参与的一种特别有效的工具,首次应用于神经康复中的中风患者。对参与下奥地利自助小组的26名中风幸存者和26名非正式护理人员进行了调查。中风幸存者的平均年龄为63.9岁(±10.4岁),非正式护理人员的平均年龄为61.9岁(±9.6岁)。疾病的平均持续时间为7.3年(±3.2年),参与自助小组的平均时长约为4年。每两名中风幸存者和每五名非正式护理人员中就有一人因中风而不得不放弃职业生涯。两组均存在经济负担、假期减少和社会活动减少的情况。非正式护理人员更频繁地表示对复发以及总体对未来的恐惧增加。三分之一的中风幸存者有失眠、抑郁和紧张情绪。行动能力下降、记忆力减退以及对温度变化的敏感度增加被视为最大的负担。尽管在赋权和生活质量衡量的许多领域存在很大重叠,但赋权衡量似乎也反映了社会参与的各个方面。因此,赋权衡量应纳入中风后的长期结果测量中。