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  • The silent and invisible care-givers : the essential structure of being a young caregiver of chronically ill parents, diagnosed with MS : the essential structure of being a young caregiver of chronically ill parents, diagnosed with MS : a phenomenological study
  • Meistara
  • During the last decade, there has been a growing interest in drawing attention to the
    many young children and adolescents, who often must provide demanding and
    intimate care for their chronically ill parents, diagnosed with MS. Although caring
    may be the one way young children and adolescents can address or alleviate some of
    the concerns they may have for their chronically ill parents, their care-giving
    experiences and responsibilities can seriously affect their well being as well as their
    transition to adulthood (Dearden and Becker, 2000).
    Due to their sometimes young age and their reluctance to draw attention to their cargiving
    responsibilities, young children and adolescents have sometimes been
    overlooked by professional caregivers as they are often not easily located or
    classified and in relation to public and professional judgements. Although children
    and adolescents have often revealed their competence and maturity through the
    provision and management of care, they have nevertheless been regarded as
    subordinates to adults, having few rights and limited authority (Aldridge and Becker,
    There is little knowledge available regarding the lived experiences of young
    caregivers in Iceland who until now have remained unrecognised and somewhat
    hidden from many professional caregivers and the Icelandic welfare systems. The
    research question of this study was ‘ what is the essential structure of being a young
    caregiver of chronically ill parent diagnosed with MS ?’. The Vancouver School of
    doing phenomenology was the phenomenological school chosen for this study. The
    sampling was purposeful and the eleven participants (co-researchers) in the study,
    participated in twenty dialogues (unstructured interviews).
    The findings of this study indicate that being a young caregiver of a chronically ill
    parent, diagnosed with MS, can be a difficult and burdensome experience. The
    young caregivers in this study had to face many new realities when their parents
    became chronically ill and their family lives often dramatically changed. Most of the
    young caregivers were involved with managing all domestic duties, for years
    assuming responsibilities for themselves and sometimes their siblings, without
    professional help or assistance. Those who had access to help and support from
    relatives, expressed having had considerable opportunities to enjoy their lives but
    those with little or no access to such support, experienced much more hardship and
    repeating episodes of anxiety and depression. Most of the young caregivers had few
    recollection of formal support from either social or health care professionals and
    most had no recollection of any support from their teachers. Their childhood and
    adolescence memories were shaped with bitterness and little comprehension of how
    or why they had been left to manage so much responsibilities, so completely on their
    own. Most of the young caregivers became periodically isolated from their friends
    and most had little desire to discuss their problematic lives with their peers. Most of
    them learned to follow ‘sensible rules’, that later developed into the ability of
    creating personal stability, an ability which helped them fight off episodic depression
    while meeting the many demands of every day living. Many of them were able to
    find supportive partners, who became their shelter in life and supported them in
    giving up their posts as primary caregivers for their, often, disabled parents.
    Although all of the young caregivers were profoundly fond of their parents, most of
    them believed their care-giving efforts had become somewhat damaging for them
    and believed they should have been replaced by a more qualified carer.

  • 1.1.2005

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