'Restricting choices and limiting independence': social and economic impact of multiple sclerosis upon households by level of disability

Abstract

Objective: To examine the relationship between the social and economic impact of multiple sclerosis (MS) and levels of MS-related disability upon households in the following domains: household composition, housing modification, employment, standard of living, children, intimate and close relationships, and social life.

Methods: A national sample of people with MS (pwMS) (n = 920), consisting of members of the MS Society and those accessing the MS Society website, completed a cross-sectional survey to generate quantitative and qualitative data.

Results: Over three-quarters of the sample reported that MS had impacted on at least some areas of daily life. The reported impact increased significantly in a linear fashion in each domain with increasing disability, as measured by an activities of daily living index, although there was a discernible 'levelling off' in terms of impact in some domains among those at the higher levels of disability and dependency. Analysis of the qualitative data suggests that this impact can be conceptualized as a gradual process of 'restricting choices' and 'limiting independence' for both pwMS and their households.

Discussion: MS restricts social and economic opportunities for pwMS and those who they live with. These findings extend the literature to households to illustrate the impact of MS not only on pwMS but also on their partners, children and other family members.