Expectations of Multiple Sclerosis Patients and Their Families: A Qualitative Study in Iran

Abstract

Background:Multiple Sclerosis (MS) is a neurological disease that is most commonly observed among young people. Drug and non-drug treatments are used to prevent the progression of the disease and to control illness-related disorders. Patients with MS often have multiple and complicated needs that require a broad spectrum of health services.Objectives:This study was conducted to identify the expectations of individuals with MS and their families for healthcare services.Patients and Methods:This article is part of a qualitative case study. The participants were selected by a purposive sampling method. In this study, semi-structured interviews of 20 individuals with MS and 8 family members were conducted to identify the expectations of MS patients and their families. In addition to the interviews, the documents related to the aim of the study, including weblogs, MS magazines, special websites of individuals with MS, and news agencies were gathered. Analysis of data was performed by a conventional content analysis method.Results:The age of the participants ranged from 22–63 years. The data obtained from this study was classified into 5 main categories as follows: being cured, need for comfort, promoting knowledge, economic welfare, and social security.Conclusions:Individuals with MS and their families had different expectations pertaining to all dimensions of life, such that not meeting the needs related to any dimension could have affect the other dimensions. Therefore, it is necessary for healthcare providers to have a holistic assessment as well as try to meet all needs and expectations.

Dealing with Chronic Illness: Experiences of Iranian Families of Persons with Multiple Sclerosis—A Qualitative Study

“…In Iran, MS is a relatively rare and unknown condition and majority of Iranians do not know about associated compilations or what type of care is needed to manage MS [ 26 ]. This qualitative study was conducted to explore and describe family caregivers' understanding, experiences, and coping strategies when caring for persons with MS.…”

Impacts of chronic illness on families, Experiences of Iranian family of patients with Multiple Sclerosis, A Qualitative Study

“…This situation may be led to stress, role captivity, and even the cessation of caregiving [34]. The studies in other parts of the world have had similar reports regarding the care of chronic and disabling diseases and financial burdens [17,19,20].…”

“…On the other hand, patients, their spouses and family members face numerous challenges such as losing a job, reduced income, changes in social status, and caregiver exhaustion [15]. Other studies have reported the effects of MS on economic setbacks and overall family welfare and suggested mental relaxation for family members as they learn to adapt to the disease progress, financial loss due to unemployment, and meeting the needs for additional expenses related to transportation and medical devices for patient mobility [16,17]. Economic impacts originate from patient's inability to work, hospitalization, and medical device for daily activities and costly medications for the disease management [18][19][20].…”

Dimensions of personal dignity of patients with multiple sclerosis: a qualitative narrative review

“…The stated factors together with sources of social support from families, life partners and other patients with MS contribute not only to maintaining dignity, but also to disease management and decrease of stress rate and improve their physical and psychological well-being. They can alleviate their symptoms and improve their adherence to treatment and life expectancy (Abolhassani et al, 2015;Dehghani, Dehghan Nayeri, Ebadi, 2018). Communication proves to be important, even central component affecting maintaining dignity (Lohne et al, 2010).…”