Association between informal help and background factors for persons with multiple sclerosis in Sweden: a...

Persons living with multiple sclerosis (MS) may experience various symptoms, and some of these persons may need help in daily life. Previous research shows that informal-that is, unpaid-help is more common among persons with MS than formal help. This study aimed to explore the association between socio-demographic background factors and the use of informal help among persons with MS in Sweden, and to investigate any differences in the amount of informal help used per week.

Cross-sectional survey data combined with Swedish register data.

4412 persons with MS between the ages of 20 and 51 years responded to the survey.

(1) Use of informal help and (2) the number of hours of informal help used per week. Descriptive statistics and logistic regression and linear regression were used for analysis.

It was found that several socio-demographic background variables were associated with the use of informal help, but a higher degree of impairment, indicated by the Expanded Disability Status Scale for Multiple Sclerosis, had the strongest positive association (OR 6.94, 95% CI 4.70 to 10.03). Fewer variables were associated with the number of hours of informal help per week. The birth country had the strongest positive relationship (B 0.50, 95% CI 0.22 to 0.76) while whether one was living alone had the strongest adverse relationship (B -0.65, 95% CI -0.89 to -0.42). Three of the socio-demographic background variables were found to be positively associated with both the use of informal help and the number of hours of informal help used per week, birth country (OR 1.34, 95% CI 1.00 to 1.79; B 0.50, 95% CI 0.22 to 0.76), receipt of sickness benefit (OR 4.22, 95% CI 3.19 to 5.58; B 0.25, 95% CI 0.05 to 0.44) and higher degree of impairment (OR 6.94, 95% CI 4.70 to 10.03; B 0.31, 95% CI 0.02 to 0.60). Persons with MS born outside the Nordic countries, receiving sickness benefit and severely affected by impairment more often used informal help and they used more hours of informal help per week.

The degree of impairment was the most important factor in determining whether informal help was used. However, the importance of the birth country and receipt of sickness benefit may indicate that subgroups of persons with MS are more vulnerable and referred to informal help rather than formal help.