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MS research update - The experience of being a young carer of a parent with MS - 10 April 2013

Summary

This study looked at the experience of 11 young carers in Iceland who had a single parent with MS. It found that many took on high levels of responsibility at a young age which impacted on other aspects of their lives. Many young carers felt unsupported by health professionals leaving them isolated and their contribution unacknowledged.

Background

Many people with MS rely on family members to help with every day tasks including more intimate care. It should be a choice whether to become a carer and many family members are happy to do this for a loved one. However, it can be both time consuming and physically and emotionally demanding.

In some families, the role of carer is taken on by children and this may be an increasing role if the parent becomes more and more affected by their MS.

How this study was carried out

This study interviewed 11 young people in Iceland who were, or had been, carers for a single parent chronically affected by MS. It aimed to examine the personal experience of being a young carer.

What was found

The young carers were providing intimate physical and emotional care to their parent with MS. Providing this support was demanding for the young people and could be embarrassing and difficult.

Their responsibilities as carers could be substantial and they often took on this responsibility completely on their own at a young age.

This role significantly restricted what was possible in the rest of their life especially as their parent's MS progressed. They could feel that they were living without a true childhood.

They received little professional support and could feel that they had no voice, were invisible and that their contribution as caregiver was not acknowledged. The researchers reported that young carers could feel unsupported, excluded and abandoned.

At the time of the interviews, many of the young people were no longer the main care giver in their family. Some had been able to let go of any emotional pain arising from their role as a young carer, to make a good transition into their new life, often with a partner, and to grow as a person. Some of those interviewed still felt hurt by their experiences of caring without adequate support.

What does it mean?

The researchers suggest that health and social care professionals should provide information, support and guidance for young carers and that this should be delivered in a culturally sensitive way. Professionals should step up to help and empower young people who are taking on a significant role within their family at a relatively young age.

Comment

This paper does not give any information on the more positive aspects of being a young carer; instead it focuses on the difficulties.

Bjorgvinsdottir K, Halldorsdottir S.
Silent, invisible and unacknowledged: experiences of young caregivers of single parents diagnosed with multiple sclerosis.
Scand J Caring Sci. 2013 Mar 28. doi: 10.1111/scs.12030. [Epub ahead of print]
abstract

More about care for people with MS

It is often said that MS affects the whole family from the time of diagnosis onwards and some people with MS will need increasing care if their symptoms become more troublesome. Often the role of carer is taken on by the partner, children and the wider family as well as having help from friends or employed carers.

Many families are keen that the person with MS should be able to stay at home and be cared for there. Often, family members will go to great lengths to ensure this happens – giving up work or other activities to be a carer and adapting the house to make it more accessible.

Being a young carer

Becoming a carer at a young age can be particularly difficult as it may involve spending more time at home, taking a high level of responsibility and acting more in the role of a parent than a child.

There are sources of support including YCNet, run by the Carer's Trust especially for young carers. YCNet has discussion boards and a chatroom. It has ideas on how to get school work done even though a young carer may be squeezed for time, how to deal with the confusing feelings that may arise and who can help to support young carers.

There is also Young Carers in Focus which links in to young carers groups across the country.

The MS Trust provides information about MS for children and young people including A kid's guide and The young person's guide

Keep Smyelin - A site for younger readers which mixes games and jokes with information about MS and children's own stories. This is part of the American National MS Society website

Having a young carer

It can also be hard for the person with MS who finds that they rely on a child for some of their care needs. This might mean that children help them with the shopping, getting dressed or going to the toilet or they may have to ask children to stay at home more.

The person with MS may feel that they are no longer in a fully adult role and it may be difficult to have to ask for even the most basic need such as a drink or to get to the toilet.

Talking about MS and the changes it brings to the family is important. You can read more here.

Options on getting care

Many families are determined to care for their loved one with MS without outside help. However, if care needs increase, it can be good to consider other options such as employing professional carers, taking a respite break or perhaps investigating full time residential care.

Adult Social Services at the local County Council (or equivalent authority such as a City Council) will be able to assess care needs then advise whether funding is available from the Council or whether the family will have to contribute financially.

Further information

You may find these links useful:

Information for carers - links to support groups and information for carers of any age

Children, young people and MS

Research by topic areas...

Diagnosis

Gajofatto A, Bongianni M, Zanusso G, et al.
Clinical and biomarker assessment of demyelinating events suggesting multiple sclerosis.
Acta Neurol Scand. 2013 Apr 1. doi: 10.1111/ane.12123. [Epub ahead of print]
abstract

Symptoms and symptom management

Taveira FM, Teixeira AL, Domingues RB.
Early respiratory evaluation should be carried out systematically in patients with multiple sclerosis.
Arq Neuropsiquiatr. 2013 Mar;71(3):142-5.
abstract
Read the full text of this paper

Beran RG, Braley TJ, Segal BM, et al.
Sleep-disordered breathing in multiple sclerosis.
Neurology. 2013 Apr 2;80(14):1354-5.
abstract

Disease modifying treatments

Fragoso YD, Alves-Leon SV, Arruda WO, et al.
Natalizumab adverse events are rare in patients with multiple sclerosis.
Arq Neuropsiquiatr. 2013 Mar;71(3):137-41
abstract
Read the full text of this paper

Pimentel ML.
Natalizumab and multiple sclerosis.
Arq Neuropsiquiatr. 2013 Mar;71(3):135-6.
abstract
Read the full text of this paper

Fredrikson S, McLeod E, Henry N, et al.
A cost-effectiveness analysis of subcutaneous interferon beta-1a 44mcg three times a week versus no treatment for patients with clinically isolated syndrome in Sweden.
J Med Econ. 2013 Apr 4. [Epub ahead of print]
abstract

Svenningsson A, Falk E, Celius EG, et al.
Natalizumab treatment reduces fatigue in multiple sclerosis. results from the TYNERGY trial; a study in the real life setting.
PLoS One. 2013;8(3):e58643.
abstract
Read the full text of this paper

Yadav V, Bourdette D.
New disease-modifying therapies and new challenges for MS.
Curr Neurol Neurosci Rep. 2012 Oct;12(5):489-91.
abstract

Drugs in development

Gold R, Giovannoni G, Selmaj K, et al.
Daclizumab high-yield process in relapsing-remitting multiple sclerosis (SELECT): a randomised, double-blind, placebo-controlled trial.
Lancet. 2013 Apr 3. doi:pii: S0140-6736(12)62190-4. 10.1016/S0140-6736(12)62190-4. [Epub ahead of print]
abstract

Williams T, Coles A, Azzopardi L.
The outlook for alemtuzumab in multiple sclerosis.
BioDrugs. 2013 Apr 5. [Epub ahead of print]
abstract

Other treatments

Skovgaard L, Nicolajsen PH, Pedersen E, et al.
Differences between users and non-users of complementary and alternative medicine among people with multiple sclerosis in Denmark: A comparison of descriptive characteristics.
Scand J Public Health. 2013 Apr 2.[Epub ahead of print]
abstract

Assessment tools

Sandroff BM, Motl RW.
Comparison of ActiGraph activity monitors in persons with multiple sclerosis and controls.
Disabil Rehabil. 2013 May;35(9):725-31.
abstract

Healy BC, Engler D, Glanz B, et al.
Assessment of definitions of sustained disease progression in relapsing-remitting multiple sclerosis.
Mult Scler Int. 2013;2013:189624.
abstract
Read the full text of this paper

Causes of MS

Munger KL, Bentzen J, Laursen B, et al.
Childhood body mass index and multiple sclerosis risk: a long-term cohort study.
Mult Scler. 2013 Apr 2. [Epub ahead of print]
abstract

Salzer J, Nyström M, Hallmans G, et al.
Epstein-Barr virus antibodies and vitamin D in prospective multiple sclerosis biobank samples.
Mult Scler. 2013 Apr 2. [Epub ahead of print]
abstract

Psychological aspects

Becker H, Stuifbergen A, Morrison J.
Promising new approaches to assess cognitive functioning in people with multiple sclerosis.
Int J MS Care. 2012 Summer;14(2):71-76.
abstract

Lovera J, Kovner B.
Cognitive impairment in multiple sclerosis.
Curr Neurol Neurosci Rep. 2012 Oct;12(5):618-27.
abstract

Other

Pietrolongo E, Giordano A, Kleinefeld M, et al.
Decision-making in multiple sclerosis consultations in Italy: third observer and patient assessments.
PLoS One. 2013;8(4):e60721.
abstract

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