Life with multiple sclerosis for children and parents

May 20, 2015 Bobbie (Barbara) J. Severson, ARNP

A patient of mine said that if he did not tell his children about his MS, he would have missed 10 years of their support.

The article, Informing the Children When a Parent Is Diagnosed as Having Multiple Sclerosis, mentions chronic neurological disease in one person affects the entire family and has a significant impact on the lives of children. Typically, when a person is diagnosed with MS, information from the health care provider is disseminated to the "ill" person, who then informs the rest of the family. However, children in the family are seldom the primary recipients of information delivered by health care professionals. Unfortunately, it has been reported that children without "thorough" information about their parents' MS have lower emotional well being than those who are better educated. 

The aim of the article’s study was to gain an understanding of how health care services could support the empowerment of children when a parent is diagnosed with MS. The study focused on what information parents with MS, their partners, and children request from health care providers.

The world is a complex place and if children are not provided with accurate, and age appropriate information, they may develop false assumptions about their parents' MS.

Children have inquiring minds and need to make sense of their world.  For instance, MS is an unpredictable disease that causes great uncertainty for a family. Children who have a parent with MS may harbor anxiety they will make their parent's disease worse. For example, they are afraid to ask their parent to go shopping believing it will contribute to more leg weakness and they might not be able to walk again. It can be equally difficult for children to understand a parent’s cognitive impairments of decreased short term memory and concentration.  As a result, kids may assume a parent's inattention and not remembering the party they went to the day before as signs of not caring about what is happening in their lives. Fatigue, another symptom in MS, can further limit a parents’ ability to participate in school or recreational activities, further isolating children from their peers and making them feel lonely and depressed. 

If a parent decides to keep their MS diagnosis a secret, in order to protect the child, this act can prevent the child from asking questions about the disease.  It can also shut down further communication between a parent and child about other things occurring in their young lives.<

Having a social network makes it easier for a child to live with a parent with MS. The child’s social network, along with his/her parent’s health care team and the school network can work together to enhance a child’s sense of well being. Parents will always be the primary resource for the child. The role of the health care team is to equip parents with knowledge and resources for their MS parenting education plan.  An important step is to inform parents about the common needs of children, since not all parents realize their MS affects their children. Removing the MS veil of secrecy promotes communication and understanding between parents and children.

Children’s age and developmental level influence how they cope and adjust.  A working alliance between the parents and the health care team is essential to decide what information a child should learn and how it should be presented. 

Life skills when a parent is diagnosed with MS

  • Parents with MS, their partners, and children benefit when informed about MS.
  • Information should be given to the person with MS and their partner at the time of diagnosis and the children shortly thereafter.
  • The need for information and the type of information shared, changes over time.
  • Information needs to be tailored to the individual and his/her maturity level and offered regularly in a manner appropriate to the disease progression and developmental level of the child.
  • In this study, adolescents preferred dissemination of MS information from the health care professional, since the parent was unable to effectively elaborate on the diagnosis and the child’s many questions.
  • Children want the opportunity to ask health care providers questions without parent involvement.
  • Meeting the health care team reduced a child's anxiety and fear.  For example, talking with the physical therapist enhanced understanding of the parent's disability and functioning.
  • Providing accurate information may result in a better adjusted family.
  • Lack of information can contribute to fear.
  • Having a social, health care, and school support network makes it easier for a child to cope with a sick parent.
  • Emotional and practical support, from the parent without MS, has a positive effect on the child.
  • When MS was no longer a secret, understanding improved between parent and child.
  • Because MS affects the whole family, it is important the health care team directs information to the entire family.
  • Provide the opportunity for individual, family, and group counseling.
  • A working alliance between the parents and health care team is critical in deciding what, when, and how information should be presented.
  • Parents need advice on how to create a climate where children can ask questions and share concerns about MS.
  • Health care providers can equip the child with knowledge and emotional support that will strengthen their ability to deal with their life situation now and in the future.

In conclusion, the study recommended it be the health care provider responsibility to provide information not only to the person with MS, but also his/her partner and family.  Well informed parents can support their children and create an atmosphere where questions are easier to raise. Accurate and age appropriate information will enhance understanding and reduce false beliefs about MS.

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