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Living with cystic fibrosis : a phenomenological study of children, adolescents, young adults and their parents


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Jessup, MM 2004 , 'Living with cystic fibrosis : a phenomenological study of children, adolescents, young adults and their parents', PhD thesis, University of Tasmania.

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In response to queries from nurses in an acute paediatric setting, this thesis
investigates the experience of children and their parents who live with a chronic, lifethreatening
and life-limiting disease - cystic fibrosis (CF). Affected families must
follow a relentless regime of daily treatment, aware that acute, potentially fatal,
exacerbations can occur at any time. What unique challenges and issues for care does
this disease present, because of its converse chronicity yet impending life-threatening
Anecdotally, nursing colleagues have conveyed their lack of insight into the concerns
confronting these children and their parents, while being required to deliver sensitive
and informed care. Because nurses generally encounter such families in an acute
phase, they have expressed a need to know about their daily experience at home,
before the exacerbation of the disease.
Current literature features research with a medical focus, but a paucity of information
for those seeking to understand the personal experience of living with CF. Cited
studies tend to be situated in large, metropolitan centres, particularly in North
America and Britain. That research does not consider an Australian perspective, nor
the unique issues that result from isolation and rurality that may be encountered by
those who reside in a small island setting. A phenomenological perspective has been used to frame the study. Data has been
drawn from unstructured, conversational style interviews. It includes personal
narratives, poetry and drawings that have been contributed by children, adolescents
and young adults aged from two to twenty-one years old, plus their parents - eight
families in all. Van Manen's (1990) four existentials are used to consider a lifeworld in which
notions of time, body, space and relationship are indelibly altered. Analysis of the
participants' contributions has realised eight distinct sub-themes that permeate their
experience. From original fright, through ongoing dynamics of fear, fight, flight,
form, familiarity and philosophy, they pursue a future that is both threatened and
continually redefined.
These sub-themes interplay in the paradox and contradiction of a life correlated with
being "all at sea." Of particular magnitude is the parents' struggle in the search for
new and accurate bearings - of information, support, and services. Their new
reference point is the external reality of confronting life and death on a daily basis,
which, although not always conscious, is nonetheless implicit in the execution of each
day's rigorous routine. The co-presence of these two dynamics situates those with CF
in a life and death binary that is the essence of living that life.
Children reveal a growing awareness of, and adaptation to, this life and death
dynamic. This is a gradual process in which some participants are still engaged, and
about which they speak in comparison with school peers. The young adults have
negotiated adolescence attended by extraordinary issues such as death of friends and
lung transplantation. They talk freely about their plans for the future that, on the one
hand, they once imagined they would never attain, but on the other, is still tentative.
In light of the experience conveyed by participants, implications for nursing education
and practice are discussed. Potential areas for further research that have been
generated by this study are then considered.
New insight gained from this research project will enable a fresh consideration of
those living with CF, as the uncovered truths and impressions provide insight into a
lifeworld that may not be as the enquiring nurses had imagined. As a result of
enhanced understanding, care can be delivered from an empathetic bearing towards
those for whom it is not so much a bothersome routine, but a life and death

Item Type: Thesis - PhD
Authors/Creators:Jessup, MM
Keywords: Cystic fibrosis in children, Parents_of_chronically_ill_children, Cystic fibrosis
Copyright Holders: The Author
Copyright Information:

Copyright 2004 the Author - The University is continuing to endeavour to trace the copyright owner(s) and in the meantime this item has been reproduced here in good faith. We would be pleased to hear from the copyright owner(s).

Additional Information:

For consultation only. No loan or photocopying permitted until 18 February 2007. Thesis (PhD.)--University of Tasmania, 2005. Includes bibliographical references

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