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首页> 外文期刊>Journal of neurology >'I have got something positive out of this situation': psychological benefits of caregiving in relatives of young people with muscular dystrophy
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'I have got something positive out of this situation': psychological benefits of caregiving in relatives of young people with muscular dystrophy

机译：“我从这种情况中得到了一些积极的收获”：在患有肌营养不良症的年轻人的亲戚中进行照料的心理好处

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This paper focuses on the psychological benefits of caregiving in key relatives of patients with muscular dystrophies (MD), a group of rare diseases characterized by progressive weakness and restriction of the patient's functional abilities. We describe whether relatives perceived caregiving to be a positive experience and test whether relatives' perceptions vary in relation to their view of the patient as a valued person, the degree of involvement in care, and the level of support provided by social network and professionals. The study sample included 502 key relatives of patients aged 4-25 years, suffering from Duchenne, Becker, or limb-girdle MD, in treatment for at least 6 months to one of the eight participating centers, living with at least one relative aged 18-80 years. Of key relatives, 88 % stated that they had gotten something positive out of the situation, 96 % considered their patients to be sensitive, and 94 % viewed their patients as talented. Positive aspects of caregiving were more recognized by key relatives who were more convinced that the patient was sensitive and who perceived that they received higher level of professional help and psychological social support. These results suggest that most key relatives consider that their caregiving experience has had a positive impact on their lives, despite the practical difficulties of caring for patients with MD. Professionals should help relatives to identify the benefits of caregiving without denying its difficulties. Clinicians themselves should develop positive attitudes towards family involvement in the care of patients with long-term diseases.
机译：本文着重于在患有肌营养不良（MD）患者的主要亲属中进行护理的心理益处，MD是一组以进行性虚弱和功能障碍为特征的罕见疾病。我们描述亲戚是否认为照顾是一种积极的经历，并测试亲戚的观念是否与他们对患者的重视，对护理的参与程度以及社交网络和专业人员提供的支持水平有关。该研究样本包括502名4-25岁，患有Duchenne，Becker或肢带畸形MD的患者的主要亲属，对八个参与中心之一进行了至少6个月的治疗，并与至少一个18岁的亲戚一起生活-80年。在主要亲戚中，有88％的人说他们从这种情况中得到了积极的帮助，有96％的人认为他们的病人很敏感，有94％的人认为他们的病人很有才华。关键亲戚更加认可了护理的积极方面，他们更坚信患者是敏感的，并认为他们得到了更高水平的专业帮助和心理社会支持。这些结果表明，尽管照顾MD患者存在实际困难，但大多数主要亲属都认为他们的护理经历对他们的生活产生了积极的影响。专业人士应帮助亲属确定照料的好处，而不要否认其困难。临床医生自己应该对家庭参与长期疾病患者的护理养成积极的态度。

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