Formal help for persons with multiple sclerosis—Background factors associated with usage of personal assistance and home help in Sweden

Abstract

Multiple sclerosis (MS) is a chronic neurological disease that may cause several different symptoms, some which may entail the need for help in daily life. The aim of this study was to explore the association between sociodemographic background factors and the use of personal assistance and home help services (home help) among persons with MS in Sweden. The study was based on cross-sectional survey data merged with register data and included 3,863 persons with MS aged 20–51. Binary logistic regression analyses were performed to identify factors associated with the use of personal assistance and home help. The central finding of this study was that grade of impairment, as determined by the Expanded Disability Status Scale for Multiple Sclerosis (EDSS), was the most important variable associated with the use of both personal assistance (p < 0.001, OR 18.83) and home help (p < 0.001, OR 6.83). Living alone and receiving sickness benefit were also both associated with the use of personal assistance (p < 0.001, OR 3.32; p 0.001, OR 3.32) and home help (p 0.004, OR 2.56; p 0.011, OR 2.56). Stating a visible symptom of MS as being the most limiting factor of the disease (p 0.001, OR 2.73) and having a disposable income below the limit for poverty risk (p 0.02, OR 2.16) was associated with the use of personal assistance. Receiving informal, meaning unpaid, help (p 0.049, OR 1.89) was associated with the use of home help. Several background factors were controlled for but were not related to differences in the usage of formal help. The results indicated no significant differences in demographic characteristics that could be linked to unequal distribution. However, differences were found between those using personal assistance and home help. The latter were mainly affected by invisible symptoms, suggesting a plausible influencing factor in the chances of obtaining more comprehensive help in the form of personal assistance. Users of home help were also more likely to receive informal help than users of personal assistance, which may suggest that home help is not sufficient.