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MS research update – Supporting the children when a parent is diagnosed with MS – 15 February 2016

Summary

This study looked at the needs of families where one parent had been diagnosed with MS, to identify any issues that could be addressed to make it easier for a child to cope with their parent’s MS.

People with MS, their partners and children took part in separate focus group interviews and shared their experiences. In the families interviewed some had open communication about the MS, others felt they should keep it from their children.

Parents said they found talking about MS complicated as there was so much uncertainty around the condition and the conversations were emotional and difficult, however the children interviewed wanted to know more about it. Some became worried or anxious if they saw symptoms they did not understand or found scary. Although the children also reported that the MS had changed their relationships, with some feeling more secure and closer to their parent with MS and more protective of them.

This study shows that MS affects the whole family and understanding and communication within the family shapes how well children can cope with the situation.

Background

Any long term health condition affects the whole family and has an impact on the lives of any children within that family. When someone is diagnosed with MS there is a need for the person involved and their family to adjust and adapt, as well as to learn about the condition and what it might mean for them, especially as MS can be unpredictable and it varies from person to person.

Previous research has shown that when one person in a couple is diagnosed with a long-term condition, communication about the condition is important for the well-being of both of them and the ability of any children to cope appears to be related to how well the healthy parent copes with it.

This study looked at the needs of families where one parent had been diagnosed with MS, to identify any issues that could be addressed to make it easier for a child to cope with their parent’s MS.

How this study was carried out

23 people from ten families in Sweden took part in the study: nine people with MS, five partners and nine children (five daughters and four sons). The children at the time of interviews were aged between 12 and 24 years old, but at the time of their parent's diagnosis they were aged between seven months and 20 years.

They shared their experiences in focus groups interviews. Parents with MS, parents without MS and the children were interviewed separately. The interviews consisted of open questions related to the course of MS, from first symptoms until the time of the interview, as well as any needs they had or experienced.

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

What was found

Despite differences in symptoms, family structure and family members’ personalities the study found some consistency in the key issues they identified from the participants sharing their personal perspectives.

For many parents their initial concerns at the point of diagnosis were about how MS would affect their children rather than themselves. The single parents in particular said they felt very vulnerable upon their diagnosis and having to deal with their own emotions and needs as well as their children’s, by themselves.

The partners of the person diagnosed with MS said they often tried to manage everything to try and compensate for something they perceived their partner might not be able to do because of their MS. They also reported that they felt alone and neglected as the focus was constantly on their partner with MS and they felt obliged to put on a brave face for the sake of everyone else.

In the families interviewed some had open communication about the MS, others felt they should keep it from their children. Many parents said they found talking about MS complicated as there was so much uncertainty around the condition and the conversations were emotional and difficult, however the children interviewed wanted to know more about it:

  • Some of the children already knew of someone with MS and assumed their parent would have the same experience, which in many cases worried them.
  • Others said seeing symptoms without any explanation to describe what they were was scary and made them anxious.
  • When there was little family communication about MS, the children tried to keep their feelings and worries to themselves, some asking their school or teachers for support or searching the internet themselves for information about it.
  • Due to the differences in ages, some of the children had grown up always knowing their parent had MS and so had grown into the situation. Others were older when their parent was diagnosed and had some had reacted with anger or wanting to run away.
  • Many reported they became more protective of the parent with MS, always being on guard in case of falls or someone challenging their right to use a disabled parking space.
  • Some children reported they felt more secure after their parent had been diagnosed, as they got to see more of their parent and spent more time with them.
  • They also said that as things changed over time the consequences of MS were integrated into their family life and this was just normal for their family.

The main message from the interviews was the desire to communicate and have assistance to talk with their children and each other to support the children through their MS journey as “MS was a family matter”.

What does it mean?

This study shows that MS affects the whole family and understanding and communication within the family shapes how well children can cope with the situation. Some parents may want to be brave about it or keep it secret but this can create barriers which makes the children anxious and worried. Health professionals could help support and empower the person with MS, by recognising that the family as a whole needs support. The person from MS may benefit from advice or information about how to talk with their children if they are uncertain of how to approach it. The partners and the children may also benefit from discussion or information sessions which exclude the parent with MS, so they are free to ask any question they want.

The authors conclude by suggesting three actions health professionals could do:

  • encourage the person with MS to involve the children,
  • offer an opportunity for the children to meet the health professionals and see what goes on,
  • offer age appropriate support and information intermittently.

Boström K, Nilsagård Y.
A family matter - when a parent is diagnosed with multiple sclerosis. A qualitative study.
J Clin Nurs. 2016 Feb 11. doi: 10.1111/jocn.13156. [Epub ahead of print]
Abstract
Read the full text of this paper

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...

Assessment tools

Motta C, Palermo E, Studer V, et al.
Disability and fatigue can be objectively measured in multiple sclerosis.
PLoS One. 2016;11(2):e0148997.
Abstract
Read the full text of this paper

Ortiz-Perez S, Andorra M, Sanchez-Dalmau B, et al.
Visual field impairment captures disease burden in multiple sclerosis.
J Neurol. 2016 Feb 9. [Epub ahead of print]
Abstract

Disease modifying drugs

O'Connor P, Comi G, Freedman MS, et al.
Long-term safety and efficacy of teriflunomide: Nine-year follow-up of the randomized TEMSO study.
Neurology. 2016 Feb 10. [Epub ahead of print]
Abstract
Read the full text of this paper

Comi G, Freedman MS, Kappos L, et al.
Pooled safety and tolerability data from four placebo-controlled teriflunomide studies and extensions.
Mult Scler Relat Disord. 2016 Jan;5:97-104.
Abstract
Read the full text of this paper

Datt J, Baldock L, Pull E, et al.
The management and outcomes of fingolimod first dose cardiac monitoring in UK patients with relapsing-remitting multiple sclerosis.
Mult Scler Relat Disord. 2016 Jan;5:40-6.
Abstract
Read the full text of this paper

Iaffaldano P, Lucisano G, Pozzilli C, et al.
Fingolimod versus interferon beta/glatiramer acetate after natalizumab suspension in multiple sclerosis.
Brain. 2015 Nov;138(Pt 11):3275-86.
Abstract

Drugs in development

De Gasperis-Brigante CD, Parker JL, O'Connor PW, et al.
Reducing clinical trial risk in multiple sclerosis.
Mult Scler Relat Disord. 2016 Jan;5:81-8.
Abstract
Read the full text of this paper

Family

Horton S, MacDonald DJ, Erickson K, et al.
A qualitative investigation of exercising with MS and the impact on the spousal relationship.
Eur Rev Aging Phys Act. 2015;12:3.
Abstract
Read the full text of this paper

Gender

Pakpoor J, Wotton CJ, Schmierer K, et al.
Gender identity disorders and multiple sclerosis risk: A national record-linkage study.
Mult Scler. 2016 Feb 8. [Epub ahead of print]
Abstract

Paediatric MS

Pastò L, Portaccio E, Goretti B, et al.
The cognitive reserve theory in the setting of pediatric-onset multiple sclerosis.
Mult Scler. 2016 Feb 11. [Epub ahead of print]
Abstract

Physical activity

Keller JL, Fritz N, Chiang CC, et al.
Adapted resistance training improves strength in eight weeks in individuals with multiple sclerosis.
J Vis Exp. 2016 Jan 29;(107).
Abstract

Peruzzi A, Cereatti A, Della Croce U, et al.
Effects of a virtual reality and treadmill training on gait of subjects with multiple sclerosis: a pilot study.
Mult Scler Relat Disord. 2016 Jan;5:91-6.
Abstract

Prognosis

Scalfari A, Lederer C, Daumer M, et al.
The relationship of age with the clinical phenotype in multiple sclerosis.
Mult Scler. 2016 Feb 11. [Epub ahead of print]
Abstract

Albanese M, Zagaglia S, Landi D, et al.
Cerebrospinal fluid lactate is associated with multiple sclerosis disease progression.
J Neuroinflammation. 2016 Feb 10;13(1):36.
Abstract
Read the full text of this paper

Zhornitsky S, McKay KA, Metz LM, et al.
Cholesterol and markers of cholesterol turnover in multiple sclerosis: relationship with disease outcomes.
Mult Scler Relat Disord. 2016 Jan;5:53-65.
Abstract

Scott TF, Gettings EJ, Hackett CT, et al.
Specific clinical phenotypes in relapsing multiple sclerosis: The impact of relapses on long-term outcomes.
Mult Scler Relat Disord. 2016 Jan;5:1-6.
Abstract

Kalincik T, Cutter G, Spelman T, et al.
Defining reliable disability outcomes in multiple sclerosis.
Brain. 2015 Nov;138(Pt 11):3287-98.
Abstract

Psychological aspects

Fiest KM, Walker JR, Bernstein CN, et al.
Systematic review and meta-analysis of interventions for depression and anxiety in persons with multiple sclerosis.
Mult Scler Relat Disord. 2016 Jan;5:12-26.
Abstract
Read the full text of this paper

Symptoms and symptom management

Anbarian M, Marvi-Esfahani M, Karimi MT, et al.
A comparison of linear and nonlinear stability parameters in different clinical forms of multiple sclerosis.
Eur Rev Aging Phys Act. 2015;12:9.
Abstract
Read the full text of this paper

Nourbakhsh B, Nunan-Saah J, Maghzi AH, et al.
Longitudinal associations between MRI and cognitive changes in very early MS.
Mult Scler Relat Disord. 2016 Jan;5:47-52.
Abstract

Milinis K, Tennant A, Young CA; TONiC study group.
Spasticity in multiple sclerosis: Associations with impairments and overall quality of life.
Mult Scler Relat Disord. 2016 Jan;5:34-9.
Abstract

Nourbakhsh B, Azevedo C, Nunan-Saah J, et al.
Longitudinal associations between brain structural changes and fatigue in early MS.
Mult Scler Relat Disord. 2016 Jan;5:29-33.
Abstract

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