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Titill

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

Útdráttur

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,
1993).
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).
iii
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.

Birting
1.1.2005


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