Young caregivers of single parents

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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."