title: Silent, invisible and unacknowledged: experiences of young caregivers of single parents diagnosed with multiple sclerosis.
abstract: OBJECTIVE
  Most people diagnosed with multiple sclerosis (MS) choose to live at home without known consequences for their children.
  
  
  OBJECTIVE
  To study the personal experience of being a young caregiver of a chronically ill parent diagnosed with MS.
  
  
  METHODS
  Phenomenology was the methodological approach of the study since it gives an inside information of the lived experience.
  
  
  METHODS
  The study was approved by the National Bioethics Committee and reported to the Data Protection Authority.
  
  
  METHODS
  We 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
  In choosing participants for the study a sampling bias may have occurred.
  
  
  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.
authors.affiliation: Landspitali University Hospital, Reykjavik, Iceland.
authors.forename: Katrin
authors.initials: K
authors.lastname: Bjorgvinsdottir
authors.forename: Sigridur
authors.initials: S
authors.lastname: Halldorsdottir
mesh_terms: D000328:Adult; D017028:Caregivers; D002648:Child; D006801:Humans; D009103:Multiple Sclerosis / Q000451:nursing*
keywords: adolescent health; caregivers; caregiving; child protection; hermeneutics; human rights; multiple sclerosis; narrative; phenomenology; qualitative approaches