Living with multiple sclerosis: A Jordanian perspective.

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.