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首页> 外文期刊>Rheumatology international. >Living with scleroderma: patients' perspectives, a phenomenological study.
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Living with scleroderma: patients' perspectives, a phenomenological study.

机译:硬皮病患者:患者的观点,一项现象学研究。

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In this study, it is aimed to determine the daily life experiences of patients on the basis their own way of statement. Sixteen patients with scleroderma were enrolled to this qualitative study. Data were collected using both a demographic data form and a semi-structured interview form. Study was made on individual patient interview by face-to-face manner. Data were evaluated using Colaizzi's phenomenological data analysis method. Data analysis revealed four categories and nine topics. These categories were (1) physical impact of disease, (2) emotional impact of disease, (3) social impact of disease and (4) patient behaviours for the cope with the disease. As emotional impact, patients imply that they have experienced disappointment, hope to get well and have fears about the future. In the physical impact category, tight skin, limitations of hand skills, swelling of the hands and feet, fatigue, swallowing difficulties and deformation of their bodies were the prominent features. In patients with recognizable disease, difficulty to join to social activities increases and eventually leads to isolation. There was also some evidence that patients who have been supported by their family and close relatives seem to be more optimistic about their disease. Most patients are not willing to communicate with other patients, particularly in an advanced stage. Scleroderma patients imply that they experience several difficulties regarding emotional, physical and social aspects. Individual abilities to cope with the disease were much more improved among patients who have a sustained social support. For advanced patients with apparent deformations, an effective social support system should be introduced.
机译:在这项研究中,旨在根据患者自己的陈述方式来确定患者的日常生活。十六名硬皮病患者被纳入这项定性研究。使用人口统计学数据形式和半结构化访谈形式收集数据。通过面对面的方式对个别患者进行访谈。使用Colaizzi的现象学数据分析方法评估数据。数据分析揭示了四个类别和九个主题。这些类别是(1)疾病对身体的影响,(2)疾病对情感的影响,(3)疾病对社会的影响以及(4)应对疾病的患者行为。作为情感上的影响,患者暗示他们已经感到失望,希望康复并担心未来。在身体影响类别中,突出的特征是皮肤紧绷,手部技能局限,手脚肿胀,疲劳,吞咽困难和身体变形。在可识别疾病的患者中,参加社交活动的难度增加,并最终导致孤立。还有一些证据表明,在家人和近亲的支持下的患者似乎对他们的疾病更为乐观。大多数患者不愿意与其他患者交流,尤其是在晚期阶段。硬皮病患者暗示他们在情感,身体和社交方面会遇到一些困难。在得到持续社会支持的患者中,个人应对疾病的能力大大提高。对于明显变形的晚期患者,应采用有效的社会支持系统。

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