Living with multiple sclerosis: A Jordanian perspective

Abstract

Background 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. Objective The purpose of this qualitative study was to explore and describe the daily living experiences and challenges of Jordanian individuals with MS. Methods 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. Results 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. Conclusions 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.

A Qualitative Metasynthesis of the Experience of Fatigue Across Five Chronic Conditions

“…Even with rests I feel so tired. 24 Others described having an attack of fatigue. 28 One person's fatigue was so debilitating that they could not physically get up to go the bathroom, When I cannot get up to go to the bathroom, I prepare diapers .…”

“…12,24e26,28 One person said, The unpredictable fatigue, walking difficulties, and balance disturbances are affecting my life tremendously. 24 One man said, I was a very social man, and suddenly everything has changed. My social life has changed a lot.…”

“…My social life has changed a lot. 24 Others experienced cognitive issues with the fatigue: . the cognitive [fatigue] is just the most distressing .. 26 Rheumatoid Arthritis.…”

“…4,31 Fatigue was depicted as severe and prioritized as one of their most distressing symptoms, often as distressing or more distressing than pain. 4,24 Descriptions of fatigue explored its profound multidimensional effects (e.g., encompassing physical severity, emotional fatigue, and cognitive fatigue). Physical fatigue was described by a patient as I feel that my body is broken and every movement is as if I was moving a mountain.…”

Measuring quality of life and identifying what is important to Jordanian living with Multiple Sclerosis using the Arabic version of the Patient Generated Index (PGI)

“…The prevalence of MS in Jordan is estimated to be around 39 per 100,000 people [2] indicating similarity to the prevalence reported worldwide. Although symptoms vary considerably among people with MS, the disease has often a major impact on sensory, motor and cognitive systems leading to loss of independence in all functional activities over time which negatively impacts the quality of life (QOL) [3,4] Investigating QOL in chronic and progressive diseases is very important for clinical research, clinical practice and may help guide policies, interventions, and services to improve their health [5]. Despite its difficulty to measure [6], QOL is a latent construct and could be only measured from the person's own perspective and not from the perspective of the family, spouse or health-care professional.…”