Association of unemployment and informal care with stigma in multiple sclerosis: Evidence from the survey on living with neurological conditions in Canada

Abstract

Background: Multiple sclerosis (MS) typically affects young adults during their primary productive years. We assessed the magnitude of, and factors associated with, employment status and informal care in people with MS in Canada. Methods: Data were compiled from the nationally representative cross-sectional Survey on Living with Neurological Conditions in Canada (SLNCC), which included adolescents and adults (age ≥15 years). Employment status was categorized as currently working or not working. The frequency of informal care that people with MS received was categorized as none, less than daily, or daily. Logistic regression analyses were undertaken to identify factors associated with employment status and informal care requirements in people with MS. Results: Of 4409 SLNCC respondents, 631 had MS, of whom 530 were included in the analysis. Of 358 respondents aged 18 to 65 years, 47.8% were not working because of MS; 44.0% reported receiving informal care, with more than half requiring daily care. For caregivers' employment, 15.5% reduced work and 8.2% stopped working because of caregiving. Greater feelings of stigmatization were associated with not working (adjusted odds ratio, 7.42 [95% CI, 2.59-21.28]) and greater informal care (adjusted odds ratio, 3.83 [95% CI, 1.84-7.96]), adjusting for sex, age, education, health-related quality of life, time since MS diagnosis, and comorbidity. Conclusions: People who feel stigmatized because of their MS are more likely to be unemployed and to require more informal care. Further research is needed to understand the temporal nature of the association between stigma and employment, productivity loss, and informal care.