慢性疾病对家庭的影响:伊朗多发性硬化症患者家庭的经历:一项定性研究

H. Ebrahimi, H. Hasankhani, H. Namdar, E. Khodadadi, M. Fooladi
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引用次数: 4

摘要

家庭成员通常是慢性疾病(如多发性硬化症)患者的主要医疗保健提供者和支持。在照顾多发性硬化症患者时,家庭承受并遇到了长期的困难。本研究旨在解释多发性硬化症患者的家庭经历及其问题和担忧。在定性研究中,在常规内容分析的基础上,采用目的抽样的方法,选取18名MS患者的家庭照顾者。数据通过半结构化和深度访谈收集,于2015年5月至12月在伊朗大不里士的多发性硬化症协会和医院进行。采用MAXQDA.10软件对数据进行定性内容分析。访谈确定了关于MS家庭护理者经历的三个主要类别:1)疾病发作危机,2)疾病负担,以及3)生活在死亡阴影下。结果表明,MS患者的家庭照顾者面临着许多问题,他们面临着因疾病负担而导致抑郁和生活质量下降的风险。调查结果还显示,家庭的主要担忧是经济问题以及对瘫痪和病人残疾的恐惧。医疗保健提供者可以利用这些结果更好地支持和照顾患者及其家庭成员,以提高他们的生活质量并减少疾病并发症。关键词:多发性硬化症;家庭照顾者;慢性疾病;疾病负担;定性研究。
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Impacts of chronic illness on families: Experiences of Iranian family of patients with Multiple Sclerosis: A Qualitative Study
Family members are often the primary healthcare providers and support for patients with a chronic disease such as Multiple Sclerosis (MS). Families endure and encounter long term difficulties when caring for a person suffering from MS. This study was conducted to explain the family experiences with multiple sclerosis and their problem and concerns.In a qualitative research, based on conventional content analysis, 18 family caregivers of patients with MS were selected by using purposive sampling method. Data were collected through semi-structured and in-depth interviews conducted at the Multiple Sclerosis Society and hospitals of Tabriz in Iran from May to December of 2015. Data were analyzed according to qualitative content analysis by using the MAXQDA.10 software. Interviews identified three main categories regarding family caregiver experiences with MS: 1) disease onset crisis, 2) disease burden, and 3) living in the shadow of death. The results showed that family caregivers of MS patients face numerous problems and they are at risk for depression and a lower quality of life due to disease burden. Also the results revealed the main concerns of families are financial problems and fear of paralysis and patient be crippled. Healthcare providers can use these results to better support and care for patients and their family members in order to improve their quality of life and reduce disease complications. Keyword: Multiple Sclerosis; Family Caregivers; Chronic illness; Disease Burden; Qualitative Research.
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来源期刊
Journal of Research in Medical and Dental Science
Journal of Research in Medical and Dental Science MEDICINE, RESEARCH & EXPERIMENTAL-
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