By Julie Moberg, MA, RN, PhD, postdoc. at the Danish Multiple Sclerosis Registry and the Danish Multiple Sclerosis Center, Department of Neurology, Copenhagen University Hospital, Rigshospitalet, Denmark.
How multiple sclerosis (MS) among parents affects their children in childhood has been reported in some studies, but little is known about the consequences later in adult life.
The potential influence on the children can arise from the variety of symptoms of the chronic illness, including fatigue and disability, which can restrict daily life of the persons with MS and might result in less energy for activities and loss of job with social implications for the family.
In my PhD thesis, we identified all persons with MS from the Danish MS Registry with onset between 1950 and 1986 to be used in two register-based studies. The Danish Civil Registration System provided the anonymized identity of their 4,177 children along with 33,416 randomly chosen people from the Danish population of the same sex and year of birth. Statistics Denmark provided information about school grades, education, employment, income, and disability pension of all the persons in our study on the individual level in an encrypted anonymized dataset.
In addition, we also performed an interview study about young adults’ experiences with parental MS. I interviewed 14 persons between 18 and 25 years with parental MS. This age group was chosen because they were young enough to remember their childhood vividly and mature enough to reflect about it.
Children with a parent with MS compared with other children achieved a higher grade point average in basic school. They attained similar levels of education. There was a strong tendency toward more of them attaining health-related educations.
We found that at age 30, the children of MS patients had 11% lower chance of being employed. At age 30 they had a 31% higher risk of receiving disability pension than the children of non-MS families, and at age 40 the risk was 20% higher. The mean income at the age interval of 45 to 49 years was similar, but children of MS patients had a 9% lower chance of belonging to the high-income group (earning more than EUR 33,650 annually amounting to about GBP 30,500).
The interviewed participants revealed that one of the greatest challenges of having a parent with MS is achieving a balance between caring for others and asserting one’s own desires.
Having a parent with MS might have social consequences later in life: in spite of attaining the same educational levels, it seems that they had a greater risk of low income and higher risk of transfer income than children from families without MS.
However, one unexpected benefit of having a parent with MS was the higher school grades. This might indicate character building with a greater sense of responsibility because of the role as a caregiver. Also, the young adults interviewed had experiences of caring for others, and putting them first (above their own wishes and needs). Amongst those being cared for and coming first in the young people’s lives were: the parent with MS, the other parent, and siblings, and they continued this pattern of care and self-sacrifice toward friends and partners. This was also in keeping with the tendency that more children of parents with MS were more likely to study health-related education.
The results of caring and self-sacrifice might partly explain some of the findings in the register-based studies. The children might continue taking care of their parents while striving to find a balance between helping others and fulfilling their own adult lives.
Parental MS influences the life of their children far into adulthood.
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Moberg JY, Laursen B, Koch-Henriksen N, Thygesen LC, Brødsgaard A, Soelberg Sørensen P, Magyari M. Employment, disability pension and income for children with parental multiple sclerosis. Mult Scler. 2017 Jul;23(8):1148-1156. doi: 10.1177/1352458516672016. PubMed link
Moberg JY, Larsen D, Brødsgaard A. Striving for balance between caring and restraint. Young adults’ experiences with parental multiple sclerosis. J Clin Nurs 2017;26(9-10):1363-1374. doi: 10.1111/jocn.13587. PubMed link
Moberg JY. Life course of children with parental multiple sclerosis. Dan Med J 2017;64(8):B5399. Free to read link.
Photographs by Dorthe Stauning Rasmussen