Summary

Previous research has shown that the ability of children to adjust to having a parent having MS depends partially on how much they know about MS. Accurate information can help dispel some of their worries and concerns. This study interviewed families to find out what they felt they needed when one parent is diagnosed with MS.

The main finding of the study was that parents with MS, their partners, and children wanted to be well informed about the condition.

The adults said that at the time of diagnosis, they found it difficult to be the one who told the children or others about MS. They found it difficult to find the right words and explanation but all had found children books specifically designed for such conversations, very useful as a tool for talking to their children and reassuring them.

It was considered by many of the participants that being present in medical appointments was very useful for the whole family. Children often felt reassured to see what their parent was experiencing when they saw their nurse, doctor or physiotherapist.

The study shows that providing appropriate information is important to ensure that people diagnosed with MS and their families feel informed and supported. The authors conclude that their results suggest that health professionals should ask what information is needed at each visit to ensure that families are kept up to date and also suggest that parents consider taking their children to appointments to help them better understand MS.

Background

When someone is diagnosed with MS, information from health professionals is mostly given to the person who has just been diagnosed, who then in turn has to inform the rest of their family. Deciding how and when to tell a child about a diagnosis of MS is a personal choice and some MS symptoms such as fatigue, can be difficult for children to understand. Previous research has shown that the ability of children to adjust to having a parent having MS depends partially on how much they know about MS. Accurate information can help dispel some of their worries and concerns. This study interviewed families to find out what they felt they needed when one parent is diagnosed with MS.

How this study was carried out

23 people from ten families took part in the study: nine people with MS, five partners and nine children. In semi structured interviews they shared their experiences.

The children at the time of interviews were aged between 12 and 23 years old, but at the time of their parent's diagnosis they were aged between seven months and 20 years.

The researchers examined the answers given during the interviews and general themes and opinions were identified.

What was found

The main finding of the study was that parents with MS, their partners, and children wanted to be well informed about the condition.

The adults said that at the time of diagnosis, they found it difficult to be the one who told the children or others about MS. They often felt that they had not yet come to terms with the diagnosis themselves or did not feel well informed about it yet to answer any questions they were asked. Many also said they found it difficult to find the right words and explanation but all had found children books specifically designed for such conversations, very useful as a tool for talking to their children and reassuring them that they were not to blame.

It was considered by many of the participants that being present in medical appointments was very useful for the whole family. For partners receiving information together as a couple helped promote understanding between them, especially when it came to hidden symptoms such as fatigue and cognition. For children meeting their parent's nurse or doctor and seeing the treatment location helped them understand and reassure them with any worries they may have had.

Many expressed a need for information and explanation to change as the parent's MS changed. Children thought that it was important that they could ask their parents any questions they may have but some also wanted the opportunity to ask health professionals questions without their parents being around too.

What does it mean?

The study shows that providing appropriate information is important to ensure that people diagnosed with MS and their families feel informed and supported. The authors suggest that without proper information, children can develop an inaccurate picture of MS and sometimes even believe that they are partly responsible for the onset or the progress of their parent's condition. The authors conclude that their results suggest that health professionals should ask what information is needed at each visit to ensure that families are kept up to date and also suggest that parents consider taking their children to appointments to help them better understand MS.

The authors conclude that reducing or managing such risk factors in people with MS would benefit their hearts but may also be beneficial to their MS, but further studies would be needed to investigate this.

Nilsagård Y, Boström K.
Informing the children when a parent is diagnosed as having multiple sclerosis..
Int J MS Care. 2015 Jan-Feb;17(1):42-8. doi: 10.7224/1537-2073.2013-047.
abstract

More about children and MS

As well as being a person with MS, you may be a partner, parent, brother or sister, friend and work colleague, amongst other roles. After diagnosis choosing whether to tell other people and if so, when to tell them and how much to tell them, can be a complex decision as well as a very personal one. Telling children and discussing the changes that MS brings can be particularly challenging for some people. Likewise for the children of a person with MS, it can sometimes be difficult to explore their feelings about MS and how it affects them.

The MS Trust has developed several resources to help families talk about MS and help children understand MS and also realise that they are not alone in the feelings that they may be experiencing:

Talking with your kids about MS - this book looks at the concerns parents may have, some of the things children may want to know and what other parents' experiences have been.

Kids' guide to MS – this book is illustrated with bright colours and engaging characters to help 6-10 year olds who have a mum or dad with MS understand a bit about what MS is, what it is like and covers some of the questions young children may have.

Young person's guide to MS – this book was written with the help of 10-16 year olds who know what it is like to have a parent with MS. They share their experiences, worries and emotions about living with MS in their family.

Research by topic areas...

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Disease modifying treatments

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Penner IK, Sivertsdotter EC, Celius EG, et al.
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Viglietta V, Miller D, Bar-Or A, et al.
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Wicks P, Brandes D, Park J, et al.
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Kułakowska A, Drozdowski W.
Does interferon beta therapy affect survival of multiple sclerosis patients?
Neurol Neurochir Pol. 2014;48(6):436-41.
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Other treatments

Mayer L, Warring T, Agrella S, et al.
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Int J MS Care. 2015 Jan-Feb;17(1):35-41.
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Physical activity

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Am J Phys Med Rehabil. 2015 Mar 12. [Epub ahead of print]
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J Neurol Phys Ther. 2015 Mar 3. [Epub ahead of print]
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Kindred JH, Tuulari JJ, Bucci M, et al.
Walking speed and brain glucose uptake are uncoupled in patients with multiple sclerosis.
Front Hum Neurosci. 2015;9:84.
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Langeskov-Christensen M, Heine M, Kwakkel G, et al.
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Sports Med. 2015 Mar 5. [Epub ahead of print]
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Disabil Rehabil. 2015 Mar 4:1-12. [Epub ahead of print]
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Prognosis

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Psychological aspects

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McGuire KB, Stojanovic-Radic J, Strober L, et al.
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Int J MS Care. 2015 Jan-Feb;17(1):1-8.
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Parthena IN, Artemios AK, Nikolaos T, et al.
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Self-management

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Services

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Stem cells

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Symptoms and symptom management

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Khalaf KM, Coyne KS, Globe DR, et al.
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Int J MS Care. 2015 Jan-Feb;17(1):14-25.
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Roberg BL, Bruce JM.
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Tempel ZJ, Chivukula S, Monaco EA 3rd, et al.
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Vitamin D

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