“An Exploration into the
Life Experiences of
Young Adults living with
Cystic Fibrosis”
Kathryn Badlan
Faculty of Health and Social Care, Bristol UWE
Why?
“It is the meaning of our experiences that
constitutes reality”
(Greene, 1978 cited in Bogdan and Biklen, 1998)
“Outsider’s perspectives view illness
from outside the experience, minimising
or ignoring the subjective reality of the
sufferer … in contrast an insider’s
perspective focuses directly and
explicitly on the subjective experience of
living with and in spite of illness”
(Conrad, 1987)
What is Cystic Fibrosis?
• Genetic
• Carrier Status 1:25
• Respiratory System
• Digestive System
1964
1982
1999 - Daytime
Nebulised antibiotics
Nebulised antibiotics
Nebulised antibiotics
Mucolytics
Bronchodilators
Bronchodilators
1999 - Night-time
Dnase
Oral antibiotics
Oral antibiotics
Intravenous antibiotics
Oral antibiotics
Nasogastric or
Bronchodilators
Gastrostomy feeding
Inhaled steroids
Oxygen
Intravenous antibiotics
NIPPV
Pancreatic supplements
Pancreatic supplements
Pancreatic supplements
Vitamins
Vitamins
Vitamins
Diet (low fat)
Diet (high fat)
Diet supplements
Chest clearance (passive)
Chest clearance (active)
Chest clearance (active)
Exercise
Exercise
Nebuliser / compressor care
Portacath
Children Special School
Insulin
Insulin
Children, adolescents
Children, adolescents, adults
Further education
Further education, work
INDEPENDENCE
NORMAL LIFE
Source:The Royal Society Journal of Medicine Supplement No.38 Vol.93 p3 (Reproduced with the kind permission of this journal)
Philosophical
foundation for the
study
Importance of
analysing meaning
conferring
experience
Edmund Husserl (1859 – 1938)
Considering what it is
to be a ‘human being’
and how we as human
beings make sense of,
and relate to, the
realities of our world.
Martin Heidegger (1889-1976)
Being-in-theworld-andbecoming
Beingtowards-death
Heideggerian Concepts
Thrownness
Being-in-theworld-withothers
Methodology
Qualitative
Interpretative
Phenomenological
Themes Emerging
Within ‘Self’
External
To ‘Self’
Within ‘Self’
Integrating cystic fibrosis into
one’s lifestyle
Aspirations to integrate into a
‘normal’ society despite cystic
fibrosis
‘Normal’
J: “We don’t know what normal is …”
Ma: “This is our normal”
Mi: “Taking tablets and nebulisers just
comes naturally now”
Ma: “We could practically do it in our
sleep”
J: “I do!!” (all laugh)
Coping strategies
• Ignoring the disease
• Use of humour
• Making it out to be less of a problem than it is
• Hiding / renaming the disease
• Acceptance of the disease
Emotional
costs
“Not so many of my friends know I
have cf … I don’t really want them
to feel sorry for me.”
“My close friends know … (pause)
I think you can tell which type of
people will take it nicely and
others will say ‘oh what a
weirdo’.”
“I told one girl that I had cf and
she genuinely did not want to
know me, so after that I never told
anyone.”
“You can remove yourself as far
as you like and this stupid bloody
disease comes too. It’s like a
shadow it doesn’t ever leave and
you don’t ever get a break from it
not even for 5 minutes.”
“The day I step back is the day I
start to lose my fight ... With me
it’s all a fight up here (points to his
head) ‘cos I live a hell of a life.”
“At the moment I think my life is
more (pause) it used to be a
physical thing but the older I got
it’s gone more mental for me.”
“Taking tablets doesn’t interfere
but taking nebulisers and physio
do. It’s what it represents as well
… it is what it represents (pause)
then it becomes an issue.”
(Thrownness)
“But in a way I feel the fight has
carried me through these years as
well as it’s a negative thing but it
has helped me as well”
(L is smiling and nodding at B indicating
complete understanding).
(Being-in-the-world-with-others)
L: “I always come in (to hospital) with a
positive attitude and I go out a wreck.
Not because of myself …
B: because of seeing other people …
L: yeah … I mean you know …
B: It’s more fear with me, I don’t
disrespect anyone with cf and I don’t
mean this in a nasty way but I don’t
want to end up like that.”
(Being-towards-death)
M: “In many ways it is a double-edged
sword ... If you took cf away from us
we would be lost I’m sure because it
is a constant battle all the time. At the
same time it has broadened our
horizons.
J: yes definitely you do value life so
much more (long silence within the
group).
M: I think it makes you a better person,
more sensitive and you don’t take
things for granted.”
Conclusions
… value and understand the
subjective experience.
… our practice must become more
empowering, through reflection.
“…yes you have your limits but
NO I am not going to sit down and
sorrow about my life. Life is for
living life is SO short, especially
for CFs”.