Thursday, 18 April 2013

Young caregivers of single parents

Are you a young champion? Do you need help? #MSBlog #MSResearch

Epub: 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.

THE STUDY'S RATIONALE: Most people diagnosed with multiple sclerosis (MS) choose to live at home without known consequences for their children.

AIMS AND OBJECTIVES: To study the personal experience of being a young caregiver of a chronically ill parent diagnosed with MS.

RESEARCH METHODS: They explored in 21 interviews the lived experience of 11 young caregivers who had cared for single chronically ill parents, diagnosed with MS.

RESULTS: The participants felt silent, invisible and unacknowledged as caregivers and received limited professional assistance. They were left to provide their parents with intimate physical and emotional care and support that was demanding, embarrassing and quite difficult while feeling unsupported, excluded and abandoned. Their caring responsibilities lead to severe restrictions in life as their parents disease progressed and they lived without a true childhood; left to manage far too many responsibilities completely on their own and at a young age. At the time of the interviews, most of the participants had left their post as primary caregivers. They were learning to let go of the emotional pain, some of them with a welcomed partner. Most of them were experiencing a healthy transition and personal growth, existentially moving from feeling abandoned towards feeling independent. However, some of them were still hurting.

CONCLUSIONS: Health professionals are urged to provide information, support and guidance for young carers in a culturally sensitive way and to take on the leading role of helping and empowering children and adolescents in similar situations.

"I know a lot of young caregivers who have been through this process. I recall vividly the case of a young 12 year old boy who had taken sole responsibility for looking after his mother who had SPMS and was wheelchair bound. The mother has shunned social services and had to rely on her son to run the home and look after her. It was a tragic. Unfortunately  in resource poor countries without a social safety net this story is not uncommon. Children of MSers are often unsung heroes. This is one of the reasons why our group has launched an education programme for children of MSers to explain to them about the disease and why their parents have the problems they do. Linked to this training programme will be a website that will go live soon."

6 comments:

  1. Excellent that you are launching this training and website. Can you join forces with other young carers organisations and hopefully increase the impact?

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  2. This is the big issue with the era we exist in: Our sense of Entitlement.

    For an MSer to knowingly want to have children after a diagnosis is, essentially, child abuse. The children may very likely grow up to be carers, deprived of normal childhoods in order to facilitate the parent that brought them into the world. The biggest problem is that most MSers will believe that they will never get to SPMS, but the likelihood is that they will. And when that happens their children will have the biggest burden.

    We genuinely believe that it is our human right to have children, but that is wrong. People with debilitating and incurable diseases shouldn’t be encouraged to have children. In fact, they ought to be more captious. Having children is not an entitlement, nor is it a right.

    No one doubts the love an MSer has for their children, but sometimes love isn’t enough.

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    Replies
    1. By that logic, people in the armed forces should also not have children as they may be injured or killed in the line of duty thereby leaving their children as carers or orphans. What is your view on that?

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    2. I Think you´re missing out on some Points here. It´s not mandatory that you are alone raising your child, it´s not mandatory that you will have PPMS and it´s not manadatory that your child will be your sole caregiver. Where I live we have a right to help, paid by the goverment, personal caregivers if that should be the case.
      What you are telling people is that they have no right to have a family because of something they might happen. Anything can happen with or without MS.
      Living in a society where we care for each oteher and and where you are not left to your own devices is the cure not telling people with MS not to have Children.

      Besy regards
      //Swedish Sara
      2 children,

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    3. Questions for \\Swedish SaraFriday, April 19, 2013 11:57:00 am

      \\Swedish Sara, do you think that MS care is better in your country than the UK? I ask because there really seems to be an attack on ill people in Britain, where we are deprived of essential drugs and services on cost grounds, often having to dip into our own savings in order to expedite things.

      Can I ask you how you feel right now with regards to your illness? Are your neurologists and nurses over there supportive? How often do you see them? Has your local authority provided any home alterations or mobility devices? Was it free of charge? Are disabled people in Sweden respected or are they treated as scroungers?

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  3. Please be aware of the American Association of Caregiving Youth. We have proven our model, the Caregiving Youth Project, and are looking to develop an affiliate network through partnerships with nonprofits. We are located in FL and affiliates are beginning in NY, NJ, OH, MD and AR.
    With support caregiving youth are valued, recognized and supported in school, out of school and at home so they can achieve academic and personal success and become healthy, productive adults. See www.aacy.org

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