Tuesday, 29 August 2017

Guest post: The effects of parental MS on children

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.




Background
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.

Methods
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.

Results
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.

Considerations
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.

Conclusion
Parental MS influences the life of their children far into adulthood.

COI: None.

Literature
  • Frank J, Tatum C, Tucker S. On small shoulders. Learning from the experiences of former young carers. London: The Children's Society; 1999. Free to read
  • Lackey NR, Gates MF. Adults' recollections of their experiences as young caregivers of family members with chronic physical illnesses. J Adv Nurs 2001;34:320-8. PubMed link
  • Moberg JY, Magyari M, Koch-Henriksen N, Thygesen LC, Laursen B, Soelberg Sørensen P. Educational achievements of children of parents with multiple sclerosis: A nationwide register-based cohort study. J Neurol 2016;263(11), 2229-2237. doi: 10.1007/s00415-016-8255-4. Free to read link, PubMed link
  • 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

6 comments:

  1. A good post. I hope my children learn valuable life lessons from the experience of their mom having MS. I am glad that there is a good chance of them excelling in school. I am confused about the statemt "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". What does that mean? Do they themselves become disabled? What kind of disability do they have?

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    Replies
    1. Dear Anonymous,
      Thank you and regarding your question about the higher risk of attaining disability pension at ages 30 and 40 compared with children from families without MS: We did not investigate the registers which might have been able to tell us the reasons behind the children attaining disability pension. This was because the studies we did were rather large and time-consuming, and as we were the first to investigate adult children with parental MS using nationwide register-based data, there were numerous questions to investigate but we had to focus because of resources available. Therefore, we do not know the reasons behind the disability pension of the children.

      We do know, however, that in Denmark disability pension is only afforded if all other employment options have been thoroughly explored through a lengthy course, and most often it is attained because of a chronic illness which cannot be cured or rehabilitated surgically or medically. None of the included children had MS themselves as this was an exclusion criterion for all the studies, and the included children were 30 to 57 years old at follow-up in 2012 for the employment study.

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    2. I tried to comment below, but it is hard. I am forcing myself to write this as it might be useful for you to know. With my mother's MS - I think it caused a wider psychological problem in the family. The value of sickness increased too much in people's minds. Am not sure how to phrase this but, there have been a number of instances in the family of people not taking care of themselves and that has caused death and disability. I think that we should be careful of this in our families. I will be unpopular for saying this; sorry in advance; But I often wonder if the fact that Prof G has not gotten his hip checked yet is a similar thing. I have seen this a lot in my extended family.

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    3. This is my last piecemeal comment on this: my father was over staying with us a couple of years ago. Even though my mother died years ago; he is still more focused on other people. He kept telling our Nanny that she worked too hard! Even though we relied on our Nanny so that we could work! He didn't even know how well she was paid! It is funny in hindsight; I practically had to restrain my hard working wife and mother of young kids from attacking him!

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    4. Dear Aidan,
      Thank you for your comments which support and expand the main theme from my interview study with 14 young adults with parental MS as well as other studies from the literature. The young adults told me about generally restraining themselves so they did not burden their families with their own problems or feelings; and some of them were diagnosed with anxiety or depression or both. They felt obligated to be responsible both for practical things, like cooking dinner or helping to administer medicine, and also the emotional equilibrium of the parents and later friends and partners. Experiencing chronic illness in the family can be challenging in a myriad of ways, not just for the person who is diagnosed but also for the family members.
      Thank you for sharing your insights with us.

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  2. Thank you for this document. This reminded me of my growing up with my Mother's MS. I tried to write a more detailed comment but it is still too difficult.

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