Abolhassani Shahla, Yazdannik Ahmadreza, Taleghani Fariba, Zamani Ahmadreza
Faculty of Nursing and Midwifery .
Disabil Rehabil. 2015;37(4):319-26. doi: 10.3109/09638288.2014.918192. Epub 2014 Dec 18.
This study aimed to determine the social aspects of multiple sclerosis (MS) in the Iranian individuals.
A qualitative case study approach was used for this study, which is a part of a larger qualitative study about health care delivery system of MS. Participants were selected on the basis of purposive sampling method. Semi-structured interviews regarding the social aspects of MS were conducted with 18 MS patients, 6 family members and 7 health care providers. Besides interviews with the participants, documents related to the aim of the study, including weblogs, MS magazines, special websites of individuals with MS and news agencies. Data analysis was performed using the qualitative content analysis technique.
Data obtained has been categorised into five main categories, including confronting stigma symbols, the outcome of stigma, walling-in due to stigma, disturbance in normal life and concern about job.
There are multiple social effects of MS on the afflicted individuals, which affect various dimensions of their life. Policy makers and health care providers must also consider these effects of MS on other dimensions of the individuals' life. Implications for Rehabilitation Multiple sclerosis (MS) is a disease which restricts social life for patients, in addition to physical impacts. Individuals with MS experienced stigma as well as problems with employment and marital life, due to improper information about MS in society. We recommend that health care workers offer proper information about MS to patients and their family members to minimise the social problems faced by them. We recommend that mass media offers proper information about MS to people in society to disseminate the correct picture of MS. We recommend that the rehabilitation team offers psychological support to patients and their families for their empowerment, to facilitate dealing with the impacts of the disease. We recommend that health care providers teach the family members about patient support and communication skills.
本研究旨在确定伊朗人群中多发性硬化症（MS）的社会层面情况。
本研究采用定性案例研究方法，这是一项关于MS医疗保健提供系统的大型定性研究的一部分。参与者通过目的抽样法选取。对18名MS患者、6名家庭成员和7名医疗保健提供者进行了关于MS社会层面的半结构化访谈。除了与参与者进行访谈外，还收集了与研究目的相关的文件，包括网络日志、MS杂志、MS患者个人的特殊网站以及新闻机构的资料。使用定性内容分析技术进行数据分析。
所获得的数据被分为五个主要类别，包括面对耻辱标志、耻辱的后果、因耻辱而封闭、正常生活受到干扰以及对工作的担忧。
MS对患者个体有多种社会影响，这些影响涉及他们生活的各个方面。政策制定者和医疗保健提供者也必须考虑MS对个体生活其他方面的这些影响。康复启示 多发性硬化症（MS）是一种除了对身体有影响外还会限制患者社会生活的疾病。由于社会上对MS的信息不正确，MS患者经历了耻辱以及就业和婚姻生活方面的问题。我们建议医护人员向患者及其家庭成员提供关于MS的正确信息，以尽量减少他们面临的社会问题。我们建议大众媒体向社会大众提供关于MS的正确信息，以传播MS的正确情况。我们建议康复团队为患者及其家人提供心理支持，以增强他们的能力，便于应对疾病的影响。我们建议医疗保健提供者向家庭成员传授患者支持和沟通技巧。
