Impact of Multiple Sclerosis on Family and Employment: A Retrospective Study in the Aegean District of Turkey

Abstract

We investigated many of the effects of multiple sclerosis (MS) on patients in the Aegean District of Turkey who have had the disease for longer than one year to establish their social and occupational needs. Questions covered income, marital status, employment status of patient and spouse, housing, employment status of children, special care needs, and what changes had occurred in any of the preceding areas due to the illness. Our survey questionnaire yielded responses from 246 MS patients (ages 16–65; 87 men, 159 women) from the outpatient departments of six centers in Izmir, Turkey. The survey was conducted from March 2, 1998, to March 5, 1999. Survey results were tabulated and analyzed statistically for correlations between factors and were similar to other reports from western countries. Men reported reduced income and higher unemployment than women, many of whom were housewives. First-degree relatives carried the burden of caregiving. Disease duration and higher Expanded Disability Status Scale (EDSS) scores were strongly correlated with changes in employment, marital status, and housing. Higher EDSS scores had a negative impact on the spouse's work and the patient's need for care. Among disease types, secondary progressive MS (SPMS) also negatively affected the family structure. The disease had little effect on children's employment status.

‘I want to be with you, but I have MS’: Challenges of interpersonal relationships from the MS patients’ point of view

“…So, taking a break from work and staying at home at the time of attack will temporarily change their lifestyle and limit their relationships outside the home. While majority of female participants were housewives and the attack did not significantly change their lifestyle (Gedizlioglu et al, ).…”

“…This difference in findings can be attributed to the disease‐related factors such as its severity and length or differences in the participants' cultural context (Gedizlioglu et al, ). Although severity of the disease is important, it seems that mere awareness of the disease even if it is mild and with no physical symptoms still influences interpersonal relationships.…”