Life course of children with parental multiple sclerosis

The majority of persons with multiple sclerosis (MS) experience onset of MS between the ages of 20 and 40. Since two-thirds of the persons with MS are young women of childbearing age, parenthood is an essential issue during this period of life. The potential influence of parental MS on children arises from the varied symptoms of the chronic illness, which affect physical and cognitive abilities. MS disabilities and fatigue can restrict daily life and result in less energy for activities or job loss and thus worse conditions for the family.

This PhD thesis was designed to investigate whether parental MS influences children in different areas throughout the children's life course (i.e. education, employment, disability pension, and income) as well as to explore the experiences of having a parent with MS. We investigated the research question using two distinct METHODS: A quantitative method based on nationwide population-based Danish registers comparing a group of children with one biological parent with MS (termed 'MS offspring') with a matched group of children of parents without MS (termed 'reference cohort') up to 58 years of age (Papers I-II). A qualitative method based on phenomenological face-to-face interviews with young adults with parental MS (Paper III). The nationwide register-based epidemiological method complemented by a phenomenological interview method, the long time-span and the age groups of 'children' up to age 58 are original within this area of research.

In Paper I, we investigated the educational achievements of 4,177 MS offspring compared with 33,416 reference children. MS off-spring achieved a higher grade point average in the final class of basic school, at age 15, although they achieved similar educational levels as did the reference children at ages 15 to 58. There was a trend toward more MS offspring women attaining health-related educations than did reference women at ages 21 to 58. In Paper II, we investigated employment and income of 2,456 MS offspring compared with 19,648 reference children. At age 30, the MS offspring were less often employed, and at ages 30 and 40 MS offspring more often received disability pension than did reference children. The mean income at the age interval of 45 to 49 years was similar. Analyzing whether the MS offspring earned more than DKK 250,000 annually (~ EUR 33,650), which is approximately double the level defined as poverty in Denmark in 2012, they earned above this level in annual gross personal in-come less frequently than did reference children. This income level was only sufficient for the bare necessities. In Paper III, we explored the experiences of children growing up with a parent with MS by interviewing 14 young adults between 18 and 25 years. The results in the interview study showed two essential themes: 'Caring' and 'Restraint'. Each essential theme emerged from four subthemes. Caring: Assuming responsibility; worry and guilt; choosing health-related educations; advantage of being responsible. Restraint: Concealing feelings and desires; anxiety and depression; shame; lack of openness and knowledge. All the young adults had experiences of the essential themes of caring and restraint. Half of the participants in the interview study were enrolled in a health-related education.

Growing up with a parent with MS can have both beneficial and adverse influences on children late into adulthood. On the one hand, the educational achievements of MS offspring are either better or similar to those of reference children because they attained better grades and similar educational levels. Also, some of the young adults interviewed found advantages to having learned to be responsible. On the other hand, we found an ad-verse association regarding employment, disability pension, and income. Also, the young adults interviewed had experiences of caring for and of practicing restraint toward the parent with MS, the other parent, and siblings, with most participants continuing this pattern toward friends and partners. The results of caring and restraint might partly explain some of the associations found in the register-based studies. The children might continue taking care of their parents and striving to find a balance between helping others and fulfilling their own desires. This caregiver challenge might also partly explain the beneficial association between parental MS on education and the adverse association on employment. Thus, having a parent with MS might be associated with long-term socioeconomic influence on education, employment, disability pension, income, and social relations in children's life course: Parental MS influences children far into adulthood.