Al-Sharman Alham, Khalil Hanan, Nazzal Mohammad, Al-Sheyab Nihaya, Alghwiri Alia, El-Salem Khalid, AlDughmi Mais
Faculty of Applied Medical Sciences, Department of Rehabilitation Sciences, Jordan University of Science and Technology, Irbid, Jordan.
Faculty of Nursing, Department of Maternal and Child Nursing-Faculty member, Jordan University of Science and Technology, Irbid, Jordan.
Physiother Res Int. 2018 Apr;23(2):e1709. doi: 10.1002/pri.1709. Epub 2018 Mar 9.
Multiple sclerosis (MS) symptoms are very heterogeneous and may lead to reduced physical, cognitive, and psychosocial functioning that can consequently impair aspects of individual's life. Many studies have examined the living experiences of individuals with MS and its impact on their daily lives. In developing countries and particularly in Jordan, there has been little attempt to conduct studies exploring the experiences of people living with MS. Such knowledge will provide a background to hidden aspects of human concepts, such as culture, perception, and attitudes about chronic diseases.
The purpose of this qualitative study was to explore and describe the daily living experiences and challenges of Jordanian individuals with MS.
A qualitative design was utilized. Sixteen individuals with MS took part in the study; they were interviewed and divided into 4 focus groups. Conversations were digitally recorded followed by a verbatim transcription. Transcripts were analysed using thematic analysis and validated via researcher triangulation and peer checking.
Experiences of 16 Jordanian individuals with MS who participated in this study were categorized into the following major themes: (a) experiences related to the disease itself and (b) experiences related to the healthcare system. Disease-related experiences include physical decline, psychosocial withdrawal, and fear of the future. Participants' experiences with the healthcare system include difficulty of diagnosis, poor communication and rapport with healthcare providers, and lack of awareness about MS and its rehabilitation.
Findings of this study suggests that more attention should be given to the people with MS in Jordan. In particular, awareness about the disease should be improved among healthcare providers and the general public. Furthermore, rehabilitation services should be emphasized during the management of MS disease.
多发性硬化症（MS）的症状非常多样，可能导致身体、认知和心理社会功能下降，进而影响个人生活的方方面面。许多研究探讨了MS患者的生活经历及其对日常生活的影响。在发展中国家，尤其是约旦，很少有人尝试开展研究来探索MS患者的经历。这些知识将为人类观念中隐藏的方面提供背景，比如文化、认知以及对慢性病的态度。
这项定性研究的目的是探索和描述约旦MS患者的日常生活经历与挑战。
采用定性设计。16名MS患者参与了研究；他们接受了访谈并被分成4个焦点小组。对话进行了数字录音，随后进行逐字转录。使用主题分析法对转录本进行分析，并通过研究者三角互证和同行检查进行验证。
参与本研究的16名约旦MS患者的经历被归纳为以下主要主题：（a）与疾病本身相关的经历，以及（b）与医疗保健系统相关的经历。与疾病相关的经历包括身体机能下降、心理社会退缩以及对未来的恐惧。参与者在医疗保健系统方面的经历包括诊断困难、与医疗服务提供者沟通不畅且关系不融洽，以及对MS及其康复缺乏认识。
本研究结果表明，约旦应更加关注MS患者群体。特别是，医疗服务提供者和普通公众对该疾病的认识应得到提高。此外
