Table Of ContentLiving with cystic fibrosis:
A phenomenological study of children, adolescents, young
adults and their parents
Submitted by
Melanie Jessup RN, BN (Hons)
Submitted in fulfilment of the requirements for the degree of Doctor of Philosophy
Tasmanian School of Nursing
University of Tasmania
Launceston
August 2004
Declaration
I certify that this dissertation contains no material that has been accepted for the
award of any other degree or diploma in any institution, College or University, and
that to the best of my knowledge and belief, it contains no material previously
published or written by another person except where due reference is made in the text
of the dissertation.
Signature: J2,
Melanie Jessup ,
2_ . I
Date •
Statement of authority of access
This thesis may be made available for loan. Copying of any part o•f this thesis is
prohibited for two years from the date this statement was signed; after that time
limited copying is permitted.
Signature:
Melanie Jessup
Date : . (. r;?-771. Q.5-
Abstract
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, life-
threatening 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
status?
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.
iv
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
imperative.
Acknowledgements
Heartfelt thanks to:
Dr Camillus Parkinson - for his patient, faithful and unstinting supervision.
Associate Professor Margaret Barrett - whose input in the latter stage has been both
timely and greatly appreciated.
Associate Professor Carey Denholm - for his guidance and expert advice.
Dear family and friends who cheered me on.
My practice colleagues in a paediatric unit in a regional hospital somewhere. Your
support and encouragement have been vital.
My relentless proof-reader for noting all the undotted i's and uncrossed t's.
The children, adolescents, young adults and their parents who shared some of the
most private details of their lives, and trusted me to 'handle with care'.
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Contents
Declaration ii
Statement of authority of access iii
Abstract iv
Acknowledgements vi
Contents vii
Prologue 1
A query from practice: question posed 2
A barrage of questions 3
A matter of facts 4
Gathering evidence 6
A narrative bent 9
A synopsis of the thesis 10
Current publications: disclosing the gap 12
1938 - 'As yet too little is known' 13
The research trail 14
1960's - web of silence 14
1970's - living and coping 15
1980's - further questions 15
1990's - a step in the right direction 16
A new century - a new look 17
A fine pedigree 17
Cracking the code 17
Advance screening 18
Diagnosis: neonatal 'screaming' 19
A costly life 19
All in the family 21
Seen but not heard 21
Schooldays 22
Adolescent awakenings 23
Sexuality matters 25
Coming of age _ 27
Adults only 28
Parents' perspective 29
vii
Stressing the obvious 30
A quantified life 31
A world view 33
QOL ' s 35
Transplant: One lung or two? 36
Cast in a new role 38
Refusal may offend 39
Coming to an end 39
Popular press 40
And so? 42
A phenomenological perspective: passé or prophetic? 43
Matters methodological 43
Philosophical conception: an historical account 44
'Ladies and gentlemen, honoured colleagues, dear comrades!' 45
Cartesian carvings 46
Zu den Sachen selbst ... Back to the things themselves 46
Phenomenological reduction 46
Intentionality 47
Language 47
What is is 48
To be or not to be: that is the question. 48
Being .. Dasein 49
Sorge - concept of care 50
Time 50
A word about language 51
Hermeneutics 51
'Charge of circularity' 52
New horizons 53
In my view ... 53
Fusion of horizons 54
A life cycle 54
A clearer perspective 56
Phenomenology — what it is/what it isn't 56
'Carefully edified thought' 57
A 'write' approach 59
Four lifeworld existentials 60
Tree of life 62
Comme ilfaut 63
A new millennium 65
An envoy 66
A starting point 66
Preliminary processes 68
Ethical matters 68
Modus operandi 68
A child's eye view 70
Parental guidance 71
Just a stage 71
viii
Meeting the criteria 72
A risky business 74
My vantage point 74
A suitable setting 75
Interviews 75
Transcribers 76
A word in confidence 77
Dealing with data 77
Held in trust: rigorous debate 78
Follow the signs 79
From process to participation 80
Prose, poetry and pictures: data disclosed 81
Putting it into context 81
A certain style 81
Tim 83
"I knew I was different straightaway" 84
Future: cancelled 85
Moving goals: elusive age 85
Knowing the difference 86
Respite years: covert body 87
Friends and confidants 87
A turning tide: the body overt 88
Life on hold 89
Why? 89
False alarm: not time 90
I'll be waiting 91
The call 91
Finally done 92
A New Life 93
A new body 94
Familiar faces in familiar spaces 95
Silent partner 95
Complication and compliance 96
Extra time 97
A future perspective: from letterbox boundary to big city 97
Not sick anymore really 98
A philosophy on life 98
New beginnings 98
Brian 99
Don't mind me 101
One in a million 102
Paying the price 103
All you need is love 104
Ann 105
• "It's a roller coaster ride" 105
The ride starts here 105
ix
Just do it 107
No favours 108
Enlisted 109
I see you 110
Breath of life 111
A double-edged death 112
Happy returns 113
Stuart 114
Mortal reminders 115
Waterloo and watershed 115
Milestone or millstone 116
Over there 116
Making meaning 117
Family ties 117
Bob 118
"I was the one in four" 118
Gone fishing 119
School days 121
"I've got CF." 123
A year off 123
Family ties 124
A risky business 125
An uninterrupted view 126
Nigel and Clare 127
"... all at sea ." 127
Great expectations 127
"What's CF?" 128
Just wondering 129
No place like home 130
Handle with care 132
Tubing revisited 132
A word of encouragement 133
City commuters 133
A good education 133
Sunset clause 135
Taking leave 136
Letting go 137
Always a possibility 137
Hannah 139
Ross 139
Lone ranger 139
Not at home 140
A long line of events 142
Outside interference 143
A means of escape 144
Home away from home 144
