so willingly gave me their time and the benefit of their experience I offer my ... This reinforces the importance of taking the parents' perceptions into, account ...
THE EXPERIENCE OF HOSPITALIZATION FOR PARENTS OF A CHRONICALLY I L L CHILD: AN INTERPRETIVE STUDY
PY
CAROLE ANNE ROBINSON
B.Sc.N., U n i v e r s i t y
of A l b e r t a , 1976
A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING ' i.
in THE FACULTY OF GRADUATE STUDIES The
School of Nursing
We accept t h i s t h e s i s as conforming to the r e q u i r e d
standard
THE UNIVERSITY OF BRITISH COLUMBIA A p r i l 1983 (t)
C a r o l e Anne Robinson,
1983
DE-6
In p r e s e n t i n g
t h i s t h e s i s i n p a r t i a l f u l f i l m e n t of
requirements f o r an advanced degree at the
the
University
o f B r i t i s h Columbia, I agree t h a t the L i b r a r y s h a l l make it
f r e e l y a v a i l a b l e f o r reference
and
study.
I
further
agree t h a t p e r m i s s i o n f o r e x t e n s i v e copying o f t h i s t h e s i s f o r s c h o l a r l y purposes may department or by h i s o r her
be granted by
the head of
representatives.
my
It i s
understood t h a t copying or p u b l i c a t i o n o f t h i s t h e s i s f o r f i n a n c i a l gain
s h a l l not be allowed without my
permission.
Department of
Nursing
The
U n i v e r s i t y of B r i t i s h Columbia
1956
Main M a l l
Vancouver, Canada V6T
1Y3
Date
(3/81)
A p r i l 15,
1983
written
ii
ABSTRACT THE EXPERIENCE OF HOSPITALIZATION FOR PARENTS OF A CHRONICALLY ILL CHILD: AN INTERPRETIVE STUDY T h i s i n t e r p r e t i v e study was designed
to e l i c i t
parents'
p e r c e p t i o n s of t h e i r c h r o n i c a l l y i l l c h i l d r e n ' s h o s p i t a l i z a t i o n s f o r the purposes
of:
clarifying
the meaning of h o s p i t a l i z a t i o n w i t h i n the
context of c h r o n i c i l l n e s s ; g a i n i n g i n s i g h t i n t o c h r o n i c i l l n e s s i n f a m i l i e s h a v i n g a c h i l d w i t h c h r o n i c d i s e a s e ; and, d e t e r m i n i n g v e n t i o n s which may make h o s p i t a l i z a t i o n episodes more Data were c o l l e c t e d through
inter-
positive.
in-depth interviews with nine
p a r e n t s from s i x f a m i l i e s having h o s p i t a l i z e d , c h r o n i c a l l y i l l c h i l d r e n . A s e m i - s t r u c t u r e d guide of q u e s t i o n s was used
f o r the i n i t i a l i n t e r v i e w s .
A d d i t i o n a l q u e s t i o n s were generated by the d a t a i t s e l f which enabled the r e s e a r c h e r to c o n s t r u c t accounts w i t h the p a r t i c i p a n t s t h a t and
explained t h e i r perspectives.
addressed
An a n a l y t i c framework of concepts,
c a t e g o r i e s and themes which r e p r e s e n t the p a r e n t s ' p e r s p e c t i v e was developed
through
c o n s t a n t comparative
a n a l y s i s of the a c c o u n t s .
The p a r e n t s e x p l a i n e d h o s p i t a l i z a t i o n , a f a c e t of t h e i r l o n g term i l l n e s s e x p e r i e n c e s , i n r e l a t i o n to the themes o f : mation n e c e s s a r y
to t h e i r u n d e r s t a n d i n g ,
c o n t r o l l i n g a s p e c t s of the
e x p e r i e n c e f o r the i l l c h i l d and f o r themselves, w i t h i n the b u r e a u c r a t i c s e t t i n g .
acquiring infor-
and r e l a t i o n s h i p s
L i t t l e has been w r i t t e n about h o s p i t a l -
i z a t i o n w i t h i n the context of c h r o n i c c h i l d h o o d i l l n e s s e s ; however, r e l a t e d r e s e a r c h s t u d i e s were used apparent of
t h a t the concerns
f o r d i s c u s s i o n purposes.
It i s
the p a r t i c i p a n t s d e s c r i b e d a r e r e p r e s e n t a t i v e
the i l l n e s s e x p e r i e n c e r a t h e r than s o l e l y a s s o c i a t e d w i t h
hospitalization.
iii The d a t a r e v e a l t h a t p a r e n t s have a unique p e r s p e c t i v e w i t h r e g a r d to h o s p i t a l i z a t i o n and the c h i l d r e n ' s i l l n e s s e s which i s based on t h e i r e x p e r i e n c e s w i t h i l l n e s s and chronicity.
One
t h e i r unique u n d e r s t a n d i n g of
can a l s o conclude t h a t p a r e n t s have some common areas
of concern d u r i n g times of h o s p i t a l i z a t i o n which are u s e f u l guides f o r assessment.
In terms of n u r s i n g p r a c t i c e , t h i s i m p l i e s that the p a r e n t ' s
unique p e r s p e c t i v e must be e l i c i t e d b e f o r e c a r e t h a t i s m u t u a l l y f y i n g can be n e g o t i a t e d .
The
satis-
i m p l i c a t i o n s f o r f u t u r e r e s e a r c h i n the
area r e l a t e to s t u d i e s which w i l l enhance n u r s e s ' u n d e r s t a n d i n g of clients' perspectives.
iv
TABLE OF CONTENTS
Abstract
'
i i
T a b l e o f Contents
iv
L i s t of Figures
vi
Acknowledgements Chapter 1:
v i i
INTRODUCTION
Background t o the Problem
1
C o n c e p t u a l Framework Problem Statement Purposes I n t r o d u c t i o n o f the Methodology T h e o r e t i c a l and M e t h o d o l o g i c a l P e r s p e c t i v e s D e f i n i t i o n s o f Terms Assumptions Limitations Summary Chapter 2:
REVIEW OF SELECTED LITERATURE
The I l l n e s s E x p e r i e n c e Chronic Childhood I l l n e s s H o s p i t a l i z a t i o n of a C h r o n i c a l l y Summary Chapter 3:
•
4 6 7 7 8 11 12 13 13
111 C h i l d
14 17 22 24
METHODOLOGY
S e l e c t i o n of P a r t i c i p a n t s C r i t e r i a f o r Selection S e l e c t i o n Procedure C h a r a c t e r i s t i c s of the P a r t i c i p a n t s Data C o l l e c t i o n Procedure f o r Data C o l l e c t i o n C o n s t r u c t i o n o f Accounts E t h i c a l Considerations A. Informed Consent and R i s k / B e n e f i t B. P r i v a c y C. C o n f i d e n t i a l i t y Data A n a l y s i s Summary
26 26 27 28 30 30 33 34 34 35 35 35 36
V
Chapter 4:
THE PARENTS' ACCOUNTS
The T r a j e c t o r y of Chronic I l l n e s s I n t e r f a c e w i t h the Bureaucracy Acquiring Information Managing the C h i l d ' s I l l n e s s E x p e r i e n c e i n H o s p i t a l M o d i f y i n g t h e E m o t i o n a l Impact o f H o s p i t a l i z a t i o n f o r S e l f R e l a t i o n s h i p s i n the H o s p i t a l S e t t i n g . The R e l a t i o n s h i p between Parent and S i c k C h i l d The P a r e n t s ' R e l a t i o n s h i p s w i t h H e a l t h Care P r o f e s s i o n a l s . Summary Chapter 5:
39 45 45 52 59 64 64 67 73
DISCUSSION OF FINDINGS
Introduction 76 The T r a j e c t o r y o f C h r o n i c I l l n e s s 76 I n t e r f a c e w i t h the Bureaucracy 83 A c q u i r i n g Information 83 Managing the C h i l d ' s I l l n e s s E x p e r i e n c e i n H o s p i t a l 90 M o d i f y i n g t h e E m o t i o n a l Impact o f H o s p i t a l i z a t i o n f o r S e l f 102 R e l a t i o n s h i p s i n the H o s p i t a l S e t t i n g 109 The R e l a t i o n s h i p between Parent and S i c k C h i l d 109 The P a r e n t s ' R e l a t i o n s h i p s w i t h . H e a l t h Care P r o f e s s i o n a l s . I l l Summary 116 Chapter 6:
SUMMARY, CONCLUSIONS AND IMPLICATIONS FOR PRACTICE AND RESEARCH
Summary C o n c l u s i o n s and I m p l i c a t i o n s f o r N u r s i n g I m p l i c a t i o n s f o r F u r t h e r Research,
119 123 126
Bibliography
129
Appendix A
137
Appendix B
138
List
F i g u r e 1:
of F i g u r e s
H e a l t h Care System
vii
Acknowledgements
I would l i k e to thank the members of my
t h e s i s committee, Dr.
Joan Anderson and J i n n y Hayes M o r r i s , f o r t h e i r support and encouragement. They h e l p e d me
to l e a r n and f o r t h a t I am g r a t e f u l .
so w i l l i n g l y gave me
who
t h e i r time and the b e n e f i t of t h e i r e x p e r i e n c e I
o f f e r my warmest thanks. f r i e n d s who
To the p a r e n t s
F i n a l l y , I would l i k e to thank my
shared b o t h the h i g h s and the lows of my
f a m i l y and
experience;.
Chapter 1 INTRODUCTION
Background to the Problem Current
trends
i n the h e a l t h o f i n d i v i d u a l s i n Western
have r e s u l t e d i n an i n c r e a s e d
focus
(Conley, 1973).
a r e a r e f l e c t i o n o f the impact t h a t
These trends
on c h r o n i c ,
long-term
illnesses
n o l o g i c a l advances have made i n b r i n g i n g communicable d i s e a s e s c o n t r o l and, s u b s e q u e n t l y , i n c r e a s i n g the l i f e who s u f f e r . f r o m
chronic
Tonkin's r e c e n t
child health p r o f i l e
systematic "there
illnesses.
Society
tech-
under
expectancy o f i n d i v i d u a l s
Many o f those a f f e c t e d a r e c h i l d r e n . (1981) i n d i c a t e s t h a t there
i s no
f o l l o w up o f s i c k i n f a n t s born i n B r i t i s h Columbia which means
a r e l i t t l e d a t a on the h e a l t h s t a t u s o r l e v e l o f f u n c t i o n o f com-
promised i n f a n t s b o r n d u r i n g
the l a s t decade" (p.40).
However, the
f i g u r e s do i n d i c a t e t h a t about 15,100 i n f a n t s w i t h a t l e a s t one c o n g e n i t a l anomaly have been born i n B r i t i s h Columbia d u r i n g
the l a s t decade and t h a t
a p p r o x i m a t e l y 22,000 i n f a n t s and c h i l d r e n have been r e g i s t e r e d as having a d i s a b i l i t y during
the same p e r i o d
are m i n i m a l e s t i m a t e s b u t p r o v i d e children i s a sizable health The cared
1981, p.40).
These f i g u r e s
e v i d e n c e t h a t c h r o n i c i l l n e s s among
problem.
l i t e r a t u r e i n d i c a t e s t h a t when a c h r o n i c a l l y i l l c h i l d i s
f o r i n the home, the i m p l i c a t i o n s f o r f a m i l y l i f e a r e broad and
pervasive 1977;
(Tonkin,
(Burton,
1975; Creer and C h r i s t i a n , 1976; Kaplan and M e a r i g ,
McCollum, 1975).
These authors have found t h a t p a r e n t s
function
as primary p r a c t i t i o n e r s i n managing the c h i l d ' s i l l n e s s on a day-to-day b a s i s and, as a r e s u l t , c o n t a c t w i t h h e a l t h p r o f e s s i o n a l s i s l i m i t e d .
-1-
2 However, a s i g n i f i c a n t parents
c o n t a c t p o i n t between h e a l t h p r o f e s s i o n a l s and
of c h r o n i c a l l y i l l c h i l d r e n occurs when the c h i l d
i s hospitalized,
a p e r i o d which a f f o r d s h e a l t h p r o f e s s i o n a l s a v a l u a b l e o p p o r t u n i t y g a i n i n s i g h t i n t o the f a m i l y ' s long-term
illness
to
experience.
P e d i a t r i c p r a c t i t i o n e r s are p l a c i n g more emphasis on the r o l e i n p r o v i d i n g support
f o r t h e i r h o s p i t a l i z e d c h i l d and,
a r e concerned about g i v i n g c a r e which b e s t meets b o t h & L e f f , 1 9 8 1 ; Marlow, 1 9 7 7 ; Whaley & Wong, 1 9 7 9 ) .
as a
parents'
result,
t h e i r needs "(Chan
T h i s becomes p a r t i c u l a r l y
important
when h o s p i t a l i z a t i o n i s a f r e q u e n t l y repeated
f a c e t of a f a m i l y ' s
long-term
i l l n e s s experience.
of theory
Unfortunately, a poverty
the h o s p i t a l i z a t i o n of c h r o n i c a l l y i l l c h i l d r e n p r o v i d e s for
i n s i g h t f u l understanding
little
of the f a m i l y ' s needs a t t h a t
regarding
support
time.
In 1 9 7 4 , the American Academy of P e d i a t r i c s s t a t e d : the a b i l i t y of nurses to work c o o p e r a t i v e l y w i t h p a r e n t s i s the b e s t way to d e a l w i t h a f r i g h t e n e d c h i l d . O f t e n p a r e n t s are b e s t a b l e to understand what the youngster wants and what he may mean i n d e s c r i b i n g h i s i l l n e s s (Newton, 1 9 7 4 , p . 2 4 ) . T h i s r e i n f o r c e s the importance of t a k i n g the p a r e n t s ' p e r c e p t i o n s account when p l a n n i n g The
care.
researcher's c l i n i c a l experience with f a m i l i e s
c h r o n i c a l l y i l l c h i l d r e n has observations
resulted i n several striking,
r e g a r d i n g the impact of long-term
of
The
first
the
life. initial
of each f a m i l y member.
the i n f l u e n c e v a r i e s from f a m i l y to f a m i l y ; however, the con-
s i d e r a t i o n g e n e r a l l y g i v e n the i l l n e s s and in
personal
i s the widespread, p e r v a s i v e i n f l u e n c e
the c h i l d ' s i l l n e s s on the day-to-day l i f e
Certainly
having
i l l n e s s on f a m i l y
These o b s e r v a t i o n s , which w i l l be d i s c u s s e d below, p r o v i d e d impetus f o r the study.
into,
l i f e s t y l e are remarkable.
The
the r e s u l t i n g m o d i f i c a t i o n s
second s t r i k i n g a s p e c t
i s the
relative
3 ease w i t h which l i f e s t y l e m o d i f i c a t i o n s i n r e l a t i o n t o i l l n e s s a r e accepted.
T h i s i s n o t t o imply t h a t changes a r e easy but they a r e q u i c k l y
i n c o r p o r a t e d i n t o everyday part of family r o u t i n e .
life
and become s e m a n t i c a l l y d e f i n e d a
"normal"
I n o t h e r words, the f a m i l i e s g e n e r a l l y cope v e r y
w e l l w i t h the demands of the i l l n e s s which seems to be a r e f l e c t i o n of t h e i r a t t i t u d e t h a t c o p i n g i s not a choice-making
i s s u e ; t h a t i s , one
does what one can w i t h i n the c o n s t r a i n t s o f the s i t u a t i o n . became e v i d e n t t h a t the f a m i l i e s a r e c o n s t a n t l y f a c i n g new
Thirdly, i t illness
problems, many o f which a r e u n p r e d i c t a b l e and a s s o c i a t e d w i t h an u n c e r t a i n outcome.
H o s p i t a l i z a t i o n , t y p i c a l l y c h a r a c t e r i z e d by a h i g h degree o f
u n p r e d i c t a b i l i t y and u n c e r t a i n t y , i s a time when many o f the p a r e n t s ' f e a r s and a n x i e t i e s a r e a c t i v a t e d .
T h i s r e s u l t s i n a s h i f t i n g o f the
f a m i l y ' s p r i o r i t i e s around the s i c k c h i l d , p a r t i c u l a r l y f o r the p a r e n t who s t a y s w i t h the c h i l d
i n hospital.
I t seems t h a t these
parents
approach h o s p i t a l i z a t i o n i n somewhat d i f f e r e n t ways than do p a r e n t s o f u s u a l l y w e l l c h i l d r e n h o s p i t a l i z e d f o r acute e p i s o d i c i l l n e s s e s .
At
t h i s p o i n t , the r e s e a r c h e r became i n t e r e s t e d i n e x p l o r i n g how i t i s t h a t p a r e n t s o f c h r o n i c a l l y i l l c h i l d r e n manage so w e l l w i t h long-term
diffi-
c u l t i e s and, more s p e c i f i c a l l y , w i t h f r e q u e n t h o s p i t a l i z a t i o n s . The
study d e s c r i b e d here was designed
to s y s t e m a t i c a l l y e x p l o r e
p a r e n t s ' p e r c e p t i o n s r e g a r d i n g the h o s p i t a l i z a t i o n s o f t h e i r ill
children.
understanding
chronically
I n f o r m a t i o n gained w i l l c o n t r i b u t e t o h e a l t h p r o f e s s i o n a l s ' o f p a r e n t s ' experfences
w i t h c h r o n i c c h i l d h o o d i l l n e s s rand,
more s p e c i f i c a l l y , h o s p i t a l i z a t i o n as a f a c e t o f the e x p e r i e n c e . The by Kleinman
c o n c e p t u a l framework which guided
the study was
developed
(1977, 1978) through work i n the a r e a of c r o s s c u l t u r a l
medicine.
4 Kleinman's s t u d i e s l e d him much broader cussed
to c o n c e p t u a l i z e the h e a l t h c a r e system i n a
manner than i s t r a d i t i o n a l l y
the case.
T h i s w i l l be
dis-
i n the f o l l o w i n g s e c t i o n .
Conceptual
Framework Western S o c i e t y ' s view of the h e a l t h care system and
has been dominated by
the p r o f e s s i o n a l m e d i c a l
of
i n s t i t u t i o n s and
illness
their
focus on o b j e c t i v e , s c i e n t i f i c , b i o m e d i c a l e x p l a n a t i o n s f o r i l l n e s s . Kleinman (1978) proposes t h a t the h e a l t h care system i s much more i n c l u s i v e than these p r o f e s s i o n a l i n s t i t u t i o n s and,
i n f a c t , "represents a
total
c u l t u r a l o r g a n i z a t i o n of m e d i c a l l y - r e l e v a n t e x p e r i e n c e s , an i n t e g r a t e d system of s o c i a l
(and p e r s o n a l ) p e r c e p t i o n s , use, and
W i t h i n t h i s system, p r o f e s s i o n a l i z a t i o n and v a l u e s has
evaluation"
compartmentalization
r e s u l t e d i n a " s e p a r a t e body of m e d i c a l b e l i e f s and
[which^ e x i s t a p a r t from the g e n e r a l c u l t u r a l m i l i e u "
(p.414).
(1978) c o n c e p t u a l i z e s the h e a l t h care system as comprised d i f f e r e n t but
of h e a l t h
practices... Kleinman
of t h r e e
i n t e r a c t i n g s e c t o r s which are s o c i o c u l t u r a l l y shaped
d e f i n e d by t h e i r own
b e l i e f s , r o l e s , behaviours
and
(p.414).
institutions.
and The
system i s d e p i c t e d below: S o c i o c u l t u r a l Systems
System(s) (Professional)
Popular C u l t u r e System of H e a l t h Care ( I n d i v i d u a l and Family Based) F i g u r e 1:
System(s)
H e a l t h Care System (Kleinman,
1978,
p.422)
5 The
s e c t o r s , termed "medical systems," serve to order and
control
Kleinman (1978) views a l l attempts to understand treatment due
medical
illness
as " e x p l a n a t o r y models" which d i f f e r among the m e d i c a l
to d i f f e r i n g h e a l t h v a l u e h i e r a r c h i e s . s e c t o r e x p l a i n , understand,
and
respond
d i s e a s e and
illness.
t i o n of b i o l o g i c and
p s y c h o p h y s i o l o g i c process
social
i n the i n d i v i d u a l " , whereas
(Kleinman,
c u l t u r a l r e a c t i o n s to
E i s e n b e r g & Good, 1978,
p.252).
These
a s s e r t t h a t n e i t h e r p r o f e s s i o n a l nor p o p u l a r view of i l l n e s s
s u f f i c i e n t unto themselves to e x p l a i n the phenomenon. of the p r o f e s s i o n a l view of i l l n e s s has f o r the e x p e r i e n c e
of b e i n g i l l
e x p l a n a t o r y model i s necessary e f f i c a c i o u s care
resulted i n a consistent disregard
i n b o t h p r a c t i c e and
research.
Health
of the
to the n e g o t i a t i o n of m u t u a l l y
( L e i n i n g e r , 1978).
are
However, the dominance
p r o f e s s i o n a l s a r e coming to r e a l i z e t h a t an u n d e r s t a n d i n g
and
popular
i s d e f i n e d as " m a l f u n c t i o n i n g or maladapta-
i l l n e s s encompasses the " p e r s o n a l , i n t e r p e r s o n a l , and
authors
the
Thus, a c o n c e p t u a l d i s t i n c t i o n i s made between
Disease
disease or discomfort"
systems
to i l l n e s s i n terms of
c u l t u r e bases i t s e x p l a n a t o r y models on p e r s o n a l and
experience with i l l n e s s .
and
I n d i v i d u a l s i n the p r o f e s s i o n a l
b i o l o g i c a l and p s y c h o l o g i c a l phenomenon of d i s e a s e ; whereas, the medical
illness.
client's
satisfying
Kleinman (1978) s t a t e s t h a t
" e x p l a n a t o r y models can be o b j e c t i v e l y e l i c i t e d as more or l e s s f o r m a l l y s t r u c t u r e d coherent ambiguous and
accounts
changing"
of r e a l i t y ,
(p.421).
though they may
be and
o f f e n are
T h i s c o n c e p t u a l framework has been used by
other nurse r e s e a r c h e r s s t u d y i n g the phenomenon of c h r o n i c i l l n e s s Anderson, 1981;
(such as
Hayes M o r r i s , Knox & Lynam, 1982).
T y p i c a l l y , c a r e of a s i c k c h i l d i n h o s p i t a l i s n e g o t i a t e d between h e a l t h p r o f e s s i o n a l s and medical
the c h i l d ' s p a r e n t s who,
as members of the
c u l t u r e , have e x p l a n a t o r y models based on t h e i r e x p e r i e n c e
popular with
6 illness.
The c o n c e p t u a l framework d i r e c t e d
the r e s e a r c h e r to d e s i g n a
study which e x p l o r e d p a r e n t s ' p e r c e p t i o n r e g a r d i n g the h o s p i t a l i z a t i o n s of t h e i r c h r o n i c a l l y i l l
c h i l d r e n i n order to g a i n a b e t t e r u n d e r s t a n d i n g
of e x p l a n a t o r y models a s s o c i a t e d w i t h long-term s p e c i f i c r e s e a r c h problem addressed p r e v i o u s l y s t a t e d concerns
i l l n e s s experience.
i n t h i s study developed
from
the
regarding health professionals' a b i l i t y
a p p r o p r i a t e l y meet the needs of p a r e n t s w i t h c h r o n i c a l l y i l l
The
to
children,
and w i l l be d i s c u s s e d i n the f o l l o w i n g s e c t i o n .
Problem Statement The ways and
l i t e r a t u r e i n d i c a t e s t h a t people
interpret
t h a t these v a r i o u s i n t e r p r e t a t i o n s guide h e a l t h b e h a v i o u r s
(Kleinman
e t a l . , 1978).
When a f a m i l y e x p e r i e n c e s
i n t e r p r e t s the i l l n e s s i n a p e r s o n a l l y meaningful s o c i a l and Although (Kleinman sought
i l l n e s s i n many
c u l t u r a l determinants
illness,
each member
f a s h i o n a c c o r d i n g to the
t h a t are s i g n i f i c a n t
to the
situation.
the g r e a t m a j o r i t y of h e a l t h c a r e o c c u r s i n the p e r s o n a l domain e t a l . , 1978)
there are times where p r o f e s s i o n a l a s s i s t a n c e i s
and h o s p i t a l i z a t i o n becomes a f a c e t of t h e r a p e u t i c management.
such, h o s p i t a l i z a t i o n becomes p a r t of the i l l n e s s e x p e r i e n c e .
How
As
is
h o s p i t a l i z a t i o n of a c h i l d e x p e r i e n c e d when the c o n t e x t i s c h r o n i c r a t h e r than acute i l l n e s s ?
T h i s problem was
addressed by f o c u s i n g on the meaning
p a r e n t s g i v e to the h o s p i t a l i z a t i o n of t h e i r c h r o n i c a l l y i l l ways they e x p l a i n t h e i r e x p e r i e n c e .
Of p a r t i c u l a r concern were:
i n which p a r e n t s cope w i t h h o s p i t a l i z a t i o n , h o s p i t a l i z a t i o n has on day-to-day l i f e and t h e i r c h i l d ' s c h r o n i c i l l n e s s , and
c h i l d and
the
the ways
t h e i r p e r c e p t i o n s of the
impact
the i l l n e s s problems which a t t e n d
the themes which c o n t r i b u t e to the formu-
l a t i o n of a framework which d e s c r i b e s the p a r e n t s ' e x p e r i e n c e s .
The
purposes
7 of the study w i l l be addressed i n the f o l l o w i n g s e c t i o n .
Purposes T h i s study i s an e x p l o r a t i o n o f the e x p e r i e n c e t i o n as p e r c e i v e d by p a r e n t s
of h o s p i t a l i z a -
of c h r o n i c a l l y i l l c h i l d r e n f o r the purposes
of: 1.
clarifying
of c h r o n i c 2. having
the meaning of h o s p i t a l i z a t i o n w i t h i n the context
illness;
g a i n i n g i n s i g h t i n t o the c h r o n i c i l l n e s s a c h i l d with
3.
experience
i n families
c h r o n i c d i s e a s e ; and,
determining
i n t e r v e n t i o n s which may enhance the i n c i d e n t s of
hospitalization. I t may be i m p o s s i b l e
f o r h e a l t h p r o f e s s i o n a l s to have an impact
on the course o f the c h i l d ' s c h r o n i c d i s e a s e , b u t :the long-term with
i t s attendant
psychosocial
d i f f i c u l t i e s i n day-to-day l i v i n g
many o p p o r t u n i t i e s t o e x e r t a p o s i t i v e i n f l u e n c e on p a r e n t s ' An
illness
experiences.
improved u n d e r s t a n d i n g of h o s p i t a l i z a t i o n as a f a c e t o f c h r o n i c
w i l l provide
sound r a t i o n a l e f o r e s t a b l i s h i n g a p p r o p r i a t e
interventions.
presents
illness
and t i m e l y
nursing
These i n t e r v e n t i o n s have the p o t e n t i a l t o have an impact on
b o t h the i n c i d e n t of h o s p i t a l i z a t i o n and the i l l n e s s as p e r c e i v e d
by the
parents. The
f o l l o w i n g f o u r s e c t i o n s , which i n c l u d e an i n t r o d u c t i o n to
the methodology, d e f i n i t i o n s o f terms, assumptions and l i m i t a t i o n s make explicit
the important parameters o f the study.
I n t r o d u c t i o n t o the Methodology The
p e r s p e c t i v e which guided t h i s study was d e r i v e d
from the
8 i n t e r p r e t i v e school of research and incorporated aspects of both the phenomenological and grounded theory approaches.
In-depth i n t e r v i e w i n g
was used f o r data c o l l e c t i o n and a semi-structured schedule of questions provided d i r e c t i o n f o r the interviews (Refer to Appendix A). T h e o r e t i c a l and Methodological Perspectives The i n t e r p r e t i v e approach i s both a theory and a methodology. T h e o r e t i c a l l y i t r e s t s on the premise that everyday experience i s valuable and amenable 1982).
to systematic e x p l o r a t i o n ( O i l e r , 1982; Swanson & Chenitz,
As a theory, the i n t e r p r e t i v e perspective i s conceptually congruent
with Kleinman's explanatory models (1978) i n "that both hold the view that humans give meaning to the r e a l i t y they experience and the meaning i s s o c i o c u l t u r a l l y located.
Methodologically t h i s allows the researcher to explore
the personal r e a l i t y of the subjects while a c t i v e l y p a r t i c i p a t i n g i n the process of data construction ( P e a r s a l l , 1965).
Within t h i s framework,
research i s recognized as a s o c i a l act (Davis, 1978). Just
as there are many ways of i n t e r p r e t i n g events, there are
many ways of exploring phenomena ( R i s t , 1979). world are amenable to q u a n t i f i c a t i o n . .
Not a l l aspects of our
In other words, simply v e r i f y i n g the
existence of behaviour and assuming the researcher's i n t e r p r e t a t i o n of meaning i s congruent with that of the p a r t i c i p a n t s may not be appropriate. Q u a l i t a t i v e methods are not prone to reductionism.
This means they are
able to accommodate the wide v a r i e t y of perspectives which a r i s e when exploring multidimensional phenomena (Kleinman, 1977).
I l l n e s s i s such a
phenomenon. The i n t e r p r e t i v e school arose from a p h i l o s o p h i c a l need to understand
the d i v e r s i t y and complexity of people i n a "human" way.
An
9 assumption universe reality
g o v e r n i n g t h i s approach
( L e i n i n g e r , 1978).
i s t h a t people c o g n i t i v e l y o r d e r
their
T h i s a l l o w s them to g i v e meaning to the
they e x p e r i e n c e which i n f l u e n c e s i n t e r p r e t a t i o n and guides
behaviour.
Many r e s e a r c h q u e s t i o n s n e c e s s i t a t e an approach
which
emphasizes i n - d e p t h " u n d e r s t a n d i n g o f human b e h a v i o u r from the a c t o r ' s own frame of r e f e r e n c e " ( R i s t , 1979, p.19).
T h i s study addresses
such
a question. There a r e two a d d i t i o n a l f a c t o r s which support the use of q u a l i t a t i v e methodology f o r t h i s study.
The f i r s t
of c l i n i c a l n u r s i n g and i t s a s s o c i a t e d s k i l l s .
r e l a t e s t o the n a t u r e
As D a v i s
(1978) s t a t e s ,
t h e r e i s a good c o n c e p t u a l f i t between phenomenology and c l i n i c a l n u r s i n g , which i s the f o c u s o f t h i s study.
Secondly, the method a l l o w s "a f r e s h
perspective i n a familiar situation" t i o n of a c h r o n i c a l l y i l l
( S t e r n , 1980, p.20).
Hospitaliza-
child i s a familiar situation f o r health
p r o f e s s i o n a l s which they tend t o view s o l e l y from the b i o m e d i c a l framework.
A f r e s h p e r s p e c t i v e from the p a r e n t s ' p o i n t o f view seems warranted. I t i s apparent
by a m e d i c a l of i l l n e s s .
t h a t the c l i n i c a l approach
to i l l n e s s ,
dominated
p e r s p e c t i v e , i s inadequate to e x p l a i n the human e x p e r i e n c e I n the p a s t , h e a l t h p r o f e s s i o n a l s have tended t o assume t h a t
t h e i r view o f r e a l i t y was the same as t h a t h e l d by the c l i e n t .
As a
r e s u l t , r e s e a r c h r e g a r d i n g i l l n e s s has f o c u s e d on the m e d i c a l p e r s p e c t i v e and has been approached
u s i n g q u a n t i t a t i v e methods.
However, as R i s t
(1979)
p o i n t s o u t , b o t h q u a n t i t a t i v e and q u a l i t a t i v e methods a r e v a l u a b l e i n t h a t they a c c e n t u a t e d i f f e r e n t a s p e c t s o f r e a l i t y . understand
We a r e coming to
t h a t the m e d i c a l view of d i s e a s e i s n o t n e c e s s a r i l y
w i t h the c l i e n t ' s view of i l l n e s s
(Kleinman, 1977; Kleinman,
congruent
et a l . ,
1978).
10 D i s c r e p a n c i e s between e x p e c t a t i o n s h e l d by h e a l t h p r o f e s s i o n a l s and c l i e n t s have r e s u l t e d i n d i s s a t i s f a c t i o n w i t h c a r e .
The
differences i n
p e r c e p t i o n have caused " s e r i o u s d i f f i c u l t i e s not o n l y i n communicating w i t h p a t i e n t s but
i n e s t a b l i s h i n g therapeutic r e l a t i o n s h i p s with
( L e i n i n g e r , 1978,
p.76).
behaviours
i n context
p r o p r i a t e and
Only through maximal u n d e r s t a n d i n g
( P e a r s a l l , 1965,
p.42)
of human
can i n t e r v e n t i o n s be
s i d e r e d an e x p e r t as s/he ( P e a r s a l l , 1965).
r e l a t e s h e r / h i s own
conception
The
T h e r e f o r e , o n l y a s m a l l number of informants
( C i c o u r e l , 1976).
from "grounded e x p e r i e n c e s , "
(Evaneshko &
i s c r i t i c a l as t h e o r y
o u t s i d e t h a t produced by ( R i s t , 1979,
Two
significant
ment are t h a t the i l l n e s s e x p e r i e n c e
The
No
information
and
exists
cultural
i m p l i c a t i o n s of t h i s s t a t e -
i s c u l t u r a l l y constructed
(Kleinman,
i n t e r p r e t i v e approach "does not e l i m i n a t e b i a s
r a t h e r , attempts to r e c o g n i z e and
incorporate i t "
( D a v i s , 1978,
by acknowledging the r e s e a r c h e r ' s r o l e i n c o n s t r u c t i n g and the e x p e r i e n c e
under-
developed
t h a t r e s e a r c h i s a s o c i a l l y ordered phenomenon ( C i c o u r e l ,
D a v i s , 1978).
supply-
p a r t i c i p a n t s ( R i s t , 1979).
i n d i v i d u a l s w i t h i n t h e i r s o c i a l and
p.17).
is
t h a t i s , e x p e r i e n c e s which are shared
between the r e s e a r c h e r and
Kay,
framework f o r making g e n e r a l sense
" A l l knowledge i s s o c i a l l y c o n s t r u c t e d .
and
be
V a l i d a t i o n of the r e s e a r c h e r ' s
s t a n d i n g of p a r t i c i p a n t s ' e x p l a n a t i o n s
1978)
may
r e s e a r c h e r a c t i v e l y p a r t i c i p a t e s i n data c o n s t r u c t i o n by
of the i n f o r m a t i o n
context"
'
they are s e l e c t e d a c c o r d i n g to p a r t i c u l a r c r i t e r i a which v a l -
i n g an i n t e r p r e t i v e schema o r c o n c e p t u a l
understood
i s con-
of r e a l i t y
i d a t e them as e x p e r t s w i t h r e g a r d to the r e s e a r c h q u e s t i o n 1982) .
ap-
timely.
W i t h i n the i n t e r p r e t i v e o r i e n t a t i o n , the p a r t i c i p a n t
r e q u i r e d and
them"
1976;
but, p.187)
interpreting
she shares w i t h p a r t i c i p a n t s ( G l a s e r & S t r a u s s ,
1965;
11 Rist,
1979). To conclude,
the i n t e r p r e t i v e approach was
chosen as i t enabled
the r e s e a r c h e r to c o n s t r u c t d a t a t t h a t i s r e f l e c t i v e of the w o r l d n u r s i n g p r a c t i c e (Swanson & C h e n i t z , 1982).
T h i s methodology i n v o l v e s a
process which encompasses the e n t i r e s c i e n t i f i c a c t , not j u s t r e p r e s e n t e d by data c o l l e c t i o n of the p r o c e s s
as r e l a t e d
of
(Swanson & C h e n i t z , 1982).
the p o r t i o n
The
specifics
to t h i s study w i l l be d i s c u s s e d i n Chapter 3
on methodology.
D e f i n i t i o n s of Terms Terms which may
be
s u b j e c t to ambiguous i n t e r p r e t a t i o n s have
been d e f i n e d below i n o r d e r to c l a r i f y 1.
Child:
2.
Chronic disease:
t h e i r use
i n this
study.
male or female from i n f a n c y to seventeen y e a r s o l d .
can be p r o g r e s s i v e and span d e s p i t e impaired
"a d i s o r d e r w i t h a p r o t r a c t e d course which
fatal,
o r a s s o c i a t e d w i t h a r e l a t i v e l y normal
p h y s i c a l or mental f u n c t i o n i n g "
(Mattsson,
life
1972,
p.801). 3.
Coping:
4.
Disease:
the way
accounts
i n the i n d i v i d u a l "
Explanatory
treatment"
s i t u a t i o n s o r problems are managed.
" m a l f u n c t i o n i n g o r m a l a d a p t i o n of b i o l o g i c and
p h y s i o l o g i c process 5.
i n which new
models:
(Kleinman, 1978,
(Kleinman e t a l . , 1978,
" a l l attempts to understand p.421).
p.252).
illness
They a r e s o c i o c u l t u r a l l y
psycho-
and
constructed
of r e a l i t y which s e r v e to order i l l n e s s v i a l a b e l l i n g ,
classifying
and e x p l a i n i n g . 6.
Illness:
" p e r s o n a l , i n t e r p e r s o n a l , and
d i s e a s e or d i s c o m f o r t " 7.
(Kleinman e t a l . , 1978,
I l l n e s s problems:
"the d i f f i c u l t i e s
c u l t u r a l r e a c t i o n s to p.252).
in living resulting
from
12 sickness" 8.
(Kleinman e t a l . , 1978, Parent:
a d u l t who
and management of l i f e 9.
f o r the c h r o n i c a l l y i l l
child.
the path
t h a t d e p i c t s the
which i s c h a r a c t e r i z e d by long-term d u r a t i o n and
p.107).
By shape i t i s meant t h a t the path
l i n e but has h i g h s , illness
i s r e s p o n s i b l e f o r the day-to-day c a r i n g
T r a j e c t o r y of c h r o n i c i l l n e s s :
experience 1979,
p.252).
lows, and
i s not
shape ( S t r a u s s ,
simply
t u r n i n g p o i n t s which r e f l e c t
illness
the
a straight changing
experience.
10.
V e r b a t i m accounts:
word-for-word segments of the taped
views w i t h p a r e n t s which g i v e access are based.
inter-
to the data on which i n t e r p r e t a t i o n s
In t h i s r e p o r t , F i n d i c a t e s f a t h e r , I i n d i c a t e s i n t e r v i e w e r
and M i n d i c a t e s mother.
Where a p p r o p r i a t e ,
the c h i l d r e n have been g i v e n
f i c t i t i o u s names.
Assumptions The 1.
assumptions t h a t guided
Parents
the study
are a b l e to i d e n t i f y and
are as f o l l o w s :
are w i l l i n g
r o l e h o s p i t a l i z a t i o n p l a y s i n the c h r o n i c i l l n e s s 2.
Parents
the
experience.
are w i l l i n g
to a r t i c u l a t e
their
s t r a t e g i e s f o r managing c h r o n i c c h i l d h o o d i l l n e s s and
i n particular
the
experience 3.
a r e a b l e to i d e n t i f y and
to a r t i c u l a t e
of h o s p i t a l i z a t i o n .
In t h a t parents
are t a l k i n g about themselves, we
t h a t the i n f o r m a t i o n they g i v e i s v a l i d and 4.
The
researcher
reliable
(Pearsall,
e x e r t s an i n f l u e n c e on the data by
p a r t i c i p a t i n g i n data c o n s t r u c t i o n (Glaser & Strauss,
must assume 1965).
actively
1965).
13
.-. L i m i t a t i o n s The 1. concern 2.
l i m i t a t i o n s of the study are as f o l l o w s :
P a r e n t s ' e x p r e s s i o n of perceptions may
have been i n f l u e n c e d by
over p o s s i b l e r e p e r c u s s i o n s r e g a r d i n g t h e i r c h i l d ' s
care.
G e n e r a l i z a b i l i t y of f i n d i n g s are l i m i t e d to the c u l t u r a l
s o c i a l groups r e p r e s e n t e d i n the study the r e a l i t y
sample.
I t must be remembered t h a t
c o n s t r u c t e d w i t h i n the r e s e a r c h encounter
of the p a r t i c i p a n t s and
i s c u l t u r a l l y and
and
is strictly
that
socially located.
Summary T h i s c h a p t e r has
i n t r o d u c e d the study, l o c a t e d i t w i t h i n a
n u r s i n g context and g e n e r a l l y d e f i n e d i t s parameters.
I t i s apparent
that
when c h r o n i c c h i l d h o o d i l l n e s s i s managed w i t h i n the p r o f e s s i o n a l m e d i c a l s e c t o r , care i n v o l v e s the n e g o t i a t i o n between d i f f e r i n g h e l d by p a r e n t s and h e a l t h p r o f e s s i o n a l s (Kleinman, Kleinman (1977, 1978)
has
proposed t h a t e l i c i t i n g
c u l t u r a l e x p e r i e n c e and
care that i s mutually
1977,
1978).
clients'
models enhances h e a l t h p r o f e s s i o n a l s ' u n d e r s t a n d i n g p e r s o n a l , s o c i a l and
e x p l a n a t o r y models
explanatory
of i l l n e s s as a
facilitates
the p r o v i s i o n of
satisfying.
T h i s study has been designed
to e x p l o r e p a r e n t s '
perceptions
of t h e i r e x p e r i e n c e w i t h the h o s p i t a l i z a t i o n of a c h r o n i c a l l y i l l i n order to enhance u n d e r s t a n d i n g childhood i l l n e s s . to i l l n e s s ,
The
child
of t h e i r e x p l a n a t o r y models f o r c h r o n i c
f o l l o w i n g c h a p t e r d i s c u s s e s the l i t e r a t u r e
related
c h r o n i c i l l n e s s i n c h i l d r e n , and h o s p i t a l i z a t i o n which p r o v i d e d
the background f o r the
study.
Chapter
2
REVIEW OF SELECTED LITERATURE
In examining
the h e a l t h l i t e r a t u r e ,
three areas appear p a r t i c u -
l a r l y r e l e v a n t to the problem statement.
The
general or foundation
i s one of i l l n e s s as a human e x p e r i e n c e .
The
second
specifically
concern
a r e a r e l a t e s more
to c h r o n i c i l l n e s s i n c h i l d r e n as a f a m i l y e x p e r i e n c e .
Third-
l y , and d i r e c t l y r e l a t e d to the i s s u e i n q u e s t i o n , i s h o s p i t a l i z a t i o n of a chronically i l l
c h i l d as a s i g n i f i c a n t o c c u r r e n c e
i n the i l l n e s s
These areas w i l l p r o v i d e the framework f o r the s e l e c t i o n and supporting
experience.
review
of
literature. As much has been w r i t t e n about c h r o n i c c h i l d h o o d i l l n e s s
that
i s not r e s e a r c h based, the purpose of t h i s review i s t o p r e s e n t an
over-
view of what seems t o be g e n e r a l l y accepted w i t h r e g a r d to i l l n e s s , chronic c h i l d h o o d i l l n e s s and h o s p i t a l i z a t i o n .
The
r o l e of the l i t e r a t u r e i s to
p l a c e t h i s study i n the context of work done by o t h e r a u t h o r s . c o n s i s t e n t w i t h the c o n c e p t u a l framework and l o g i c a l p e r s p e c t i v e which d i r e c t e d the author encounter w i t h an open mind and p a r t i c i p a n t s ' viewpoints. s t u d i e s w i l l be p r e s e n t e d
This i s
the i n t e r p r e t i v e methodoto e n t e r the r e s e a r c h
to be guided i n d a t a c o l l e c t i o n by
A more r i g o r o u s treatment i n Chapter
the
of r e l a t e d r e s e a r c h
5 where the f i n d i n g s of t h i s
study
w i l l be d i s c u s s e d i n r e l a t i o n t o the f i n d i n g s of o t h e r r e s e a r c h e r s .
The
Illness
Experience
I l l n e s s i s a s o c i a l l y and a c c o r d i n g to Kleinman
c u l t u r a l l y l o c a t e d phenomenon which,
(1977, 1978), i s l a b e l l e d c l a s s i f i e d , e x p l a i n e d , -14-
15 and
c o n t r o l l e d w i t h i n the h e a l t h c a r e system.
by the p l u r a l m e d i c a l forms which comprise System are founded
The e x p l a n a t o r y models used
Western S o c i e t y ' s H e a l t h Care
on d i f f e r i n g h i e r a r c h i e s of h e a l t h v a l u e s and
which means t h a t h e a l t h p r o f e s s i o n a l s and
t h e i r c l i e n t s may
pant v i e w p o i n t s w i t h r e g a r d to " c l i n i c a l r e a l i t y " Kleinman et a l . , 1978).
C l i e n t s understand
and
(Kleinman,
beliefs
have d i s c r e 1977,
e x p l a i n i l l n e s s i n terms
of t h e i r " e x p e r i e n c e s of d i s v a l u e d changes i h s t a t e s of b e i n g and function"
(Kleinman
et a l . , 1978,
1978;
in social
p.251); whereas, the e x p l a n a t o r y models
h e l d by h e a l t h p r o f e s s i o n a l s a t t e n d t o d i s e a s e , t h a t i s , b i o - p s y c h o p h y s i o l o g i c a l malfunction.
As such, c l i e n t s are p r i m a r i l y concerned
with
the
day-to-day problems of l i v i n g which a r i s e i n the i l l n e s s e x p e r i e n c e
and
seek p r o f e s s i o n a l a s s i s t a n c e w i t h managing these d i f f i c u l t i e s as o n l y o p t i o n i n the c h o i c e of a v a i l a b l e treatments
(Kleinman,
1977).
one
Kleinman
et a l . (1978) s t a t e t h a t h e a l t h p r o f e s s i o n a l s ' concern w i t h c o n s t r u c t i n g o b j e c t i v e , s c i e n t i f i c accounts
of i l l n e s s has
l e d them to focus on c a r e
t h a t r e s u l t s i n a " t e c h n i c a l f i x " but which o f t e n i g n o r e s the meaning c l i e n t s give to t h e i r i l l n e s s experiences.
The
r a m i f i c a t i o n s may
be
d i s s a t i s f a c t i o n w i t h c a r e and l a c k of t h e r a p e u t i c s u c c e s s . S e v e r a l i m p l i c a t i o n s a r e e v i d e n t w i t h r e g a r d to the needs of i n d i v i d u a l s i n relation::to i l l n e s s .
Kleinman et a l . (1978) a r t i c u l a t e t h a t
the same o b j e c t i v e l y v e r i f i a b l e b i o - p s y c h o - p h y s i o l o g i c a l symptoms may s u b j e c t i v e l y e x p e r i e n c e d i n v e r y d i f f e r e n t ways by d i f f e r e n t
be
individuals.
T h i s i s supported by Hodgson's work (1980) w i t h d i a b e t i c a d o l e s c e n t s . Lipowski
(1970) p o i n t s out t h a t how
one
copes w i t h i l l n e s s depends on
ors i n h e r e n t i n the i n d i v i d u a l , the d i s e a s e and suggests
the environment.
This
t h a t the i n t r a p e r s o n a l f a c t o r s " c o n t r i b u t e to the s u b j e c t i v e
factauthor
16 meaning which every i l l n e s s has determine coping of symptoms may
f o r the i n d i v i d u a l and
s t r a t e g i e s " (p.94). i n fact misinterpret
which prompted h e a l t h s e e k i n g
this i n turn
Thus i t appears t h a t simple treatment or f a i l
to address the
concerns
behavior.
Kleinman et ali."'.(1978) make the p o i n t t h a t d i s e a s e not have any
but
i t may
may
not have an impact on the d i s e a s e when the i l l n e s s i s not
T h i s i s due
helps
e f f e c t on the i l l n e s s .
can be
treated
In f a c t , m e d i c a l management considered.
i n p a r t to c l i e n t noncompliance when incongruent views of
ness are o p e r a t i n g
and
leads
to n u r s e / p h y s i c i a n
dissatisfaction.
These
t h e o r i s t s conclude t h a t e f f e c t i v e c l i n i c a l p r a c t i c e must i n c o r p o r a t e u n d e r s t a n d i n g of the complex, m u l t i f a c t o r i a l n a t u r e of
ill-
an
illness.
Many authors acknowledge t h a t when a c h i l d i s i l l i t i s a f a m i l y affair
(Friedman, 1981;
Hill,
1978;
Marlow, 1977;
T h i s i s c o n s i s t e n t w i t h Kleinman's (1977^ 1978) personal
domain i s s o c i o c u l t u r a l l y c o n s t r u c t e d
and Wong (1979) d e s c r i b e
Whaley & Wong, 1979).
view t h a t i l l n e s s i n w i t h i n the f a m i l y .
f a m i l y r e a c t i o n to an i l l c h i l d t h i s
the
Whaley
way:
Because a f a m i l y i s a system of i n t e r d e p e n d e n t p a r t s , a change i n any one member of the system causes a c o r r e s p o n d i n g change i n every other member. S c h e m a t i c a l l y the f a m i l y system can be viewed as a set of gears of cogwheels; movementr.in any one gear causes a r e c i p r o c a l movement i n every other gear....When i l l n e s s o c c u r s , the c h i l d o f t e n becomes the p r i n c i p a l d i r e c t i n g f o r c e and, as such, causes major responses i n each of the o t h e r f a m i l y members (p.900). The
p e d i a t r i c l i t e r a t u r e d i r e c t s h e a l t h p r o f e s s i o n a l s to
family-centered
c a r e , which r e q u i r e s t h a t each f a m i l y member be
as " c l i e n t "
(Marlow, 1977;
p a r e n t s who
most f r e q u e n t l y
the i l l c h i l d ' s care and domain.
Newton, 1974;
Whaley & Wong,..1979).
transact with health p r o f e s s i o n a l s
so share the r o l e of c l i e n t
provide
designated I t i s the regarding
i n the p r o f e s s i o n a l
T h i s i n d i c a t e s the need f o r h e a l t h p r o f e s s i o n a l s and
parents
to
17 e s t a b l i s h a common ground o f understanding negotiated.
According
from which o p t i m a l c a r e can be
to Kleinman e t a l . (1978) t h i s i n v o l v e s e x p l o r i n g
the b e l i e f s , meanings and i n t e r p r e t a t i o n s t h a t govern i n d i v i d u a l s ' h e a l t h behaviours. I n s i g h t f u l understanding
i s particularly
important
to f a m i l i e s
d e a l i n g w i t h t h e long-term d i f f i c u l t i e s posed by c h r o n i c c h i l d h o o d As p r e v i o u s l y s t a t e d , improved m e d i c a l i n the n a t u r e attention
(Lalonde,
support
i s r e s u l t i n g i n a chang
of d i s e a s e such t h a t c h r o n i c i l l n e s s i s becoming a focus o f 1974; Tonkin,
d i f f i c u l t i e s coping w i t h and
technology
1981).
Some authors
suggest t h a t our
c h r o n i c i l l n e s s stem from d i r e c t i n g a t t e n t i o n
to s p e c i f i c categories of disease.
As such, " c h r o n i c
i t s e l f as a major and g e n e r a l h e a l t h issue.?is o n l y dimly at a l l V
illnes
illness
understood, i f
(Fagerhaugh, S t r a u s s , Suczek & Wiener, 1980, p.669).
Therefore,
the l i t e r a t u r e r e l a t e d to c h r o n i c c h i l d h o o d
i l l n e s s w i l l be d i s c u s s e d i n
terms of h e a l t h i s s u e s r a t h e r than s p e c i f i c
diseases.
Chronic. Childhood
Illness
I l l n e s s may take t h e form of acute
episodes
o r i t may be o f
long-term d u r a t i o n .
Every
experience.
(1979) s t a t e s t h a t c h r o n i c i t y i m p l i e s a t r a j e c t o r y
Strauss
i l l n e s s has a t r a j e c t o r y which d e p i c t s t h e
which has long-term d u r a t i o n as w e l l as shape. al.
According
t o Kleinman e t
(1978) t h i s t r a j e c t o r y i s not n e c e s s a r i l y congruent w i t h
of t h e accompanying d i s e a s e and i s f r e q u e n t l y u n p r e d i c t a b l e . significant ordered
t o note t h a t t h e e x p e r i e n c e
of i l l n e s s ,
t h e course It i s
l i k e any s o c i a l l y
phenomenon, can be a l t e r e d and t h a t t h i s may be independent o f
change i n the a s s o c i a t e d
disease.
18 Kleinman et al.(1978) p o i n t out t h a t c h r o n i c d i s e a s e incurable.
Thus i t becomes i m p e r a t i v e
perspective
of c u r i n g d i s e a s e
to s h i f t
the focus
t o one o f h e a l i n g i l l n e s s .
supports t h i s view i n h i s statement t h a t " r a i s i n g i n the v a l u e
ill,
from the m e d i c a l Lalonde
i s of c r i t i c a l
a r e t o be m a r s h a l l e d on b e h a l f
o f the c h r o n i c a l l y
who c o n s t i t u t e a l a r g e and growing p a r t o f our p o p u l a t i o n "
Further,
(1974)
'care'' t o v l e v e l v o f c u r e '
system of the h e a l t h c a r e o r g a n i z a t i o n
importance i f r e s o u r c e s
i s often
Kleinman e t a l . (1978) s t a t e t h a t management o f c h r o n i c
(p.60). illness,
l i k e most e p i s o d i c acute i l l n e s s e s , o c c u r s p r i m a r i l y i n t h e home which means t h a t h e a l t h p r o f e s s i o n a l s a r e p r e s e n t e d w i t h few o p p o r t u n i t i e s t o e x e r t a p o s i t i v e i n f l u e n c e on the i l l n e s s
experience.
For p a t i e n t s , i l l n e s s problems - the d i f f i c u l t i e s i n l i v i n g r e s u l t i n g from a s i c k n e s s - a r e u s u a l l y viewed as c o n s t i t u t i n g the e n t i r e d i s o r d e r . Conversely, doctors often disregard i l l n e s s problems because they look upon the d i s e a s e as the d i s o r d e r . Both views a r e i n s u f f i c i e n t (Kleinman e t al.,, 1978, p.252). The
authors conclude t h a t o n l y when d a i l y d i f f i c u l t i e s a r i s i n g from the
illness and
a r e taken i n t o account w i l l o p t i m a l
r e s u l t s from m e d i c a l management
treatment regimens o c c u r . Chronic
childhood
of i n t e r e s t i n the h e a l t h
illness
literature
has become a r e l a t i v e l y r e c e n t (Burton,
topic
1975; Canam, 1980; C r e e r &
C h r i s t i a n , 1976; Crosby, 1977; H e w i t t , Newson & Newson, 1970; Kaplan & M e a r i g , 1977; K i k u c h i , 1977; K i n g , 1981; K r u l i k , 1980; Kupst, D r e s s e r , Schulman & M i l t o n , 1976; M a t t s s o n , 1972; McCollum & Gibson, 1970; R o s e n s t e i n , 1970;
Schulman 1976).
illness
Many authors agree t h a t the presence of c h r o n i c
i n c h i l d r e n i s s t r e s s f u l f o r the f a m i l y
(Burton,
1975; Canam, 1980;
C r e e r & C h r i s t i a n , 1976; Gayton, Friedman, T a v o r n i n a & Tucker, 1977; Schulman, 1976). coping
As such, most o f t h e l i t e r a t u r e focuses
and e f f e c t s on the f a m i l y
on s t r e s s o r s ,
19 S e v e r a l authors d i s c u s s the s p e c i a l demands which a r e made on f a m i l i e s of c h r o n i c a l l y i l l c h i l d r e n
(Burton, 1975; Calhoun,
Selby &
K i n g , 1976; Chan & L e f f , 1982; C r e e r & C h r i s t i a n , 1976; Hewitt 1970;
McCollum, 1975; R o s e n s t e i n , 1970).
et a l . ,
The d i s c u s s i o n s emphasize t h a t
each f a m i l y e x p e r i e n c e s demands which v a r y over time and o f t e n r e s u l t i n d r a s t i c a l l y a l t e r e d f a m i l y l i f e s t y l e s as w e l l as compromised f a m i l y functioning.
Krulik
(1980) s t a t e s t h a t p a r e n t i n g i n these
r e q u i r e s much thought
circumstances
and i n g e n u i t y as t h e r e i s l i t t l e p r e p a r a t i o n f o r
coping w i t h the m u l t i p l e u n p r e d i c t a b l e problems o f l i v i n g a s s o c i a t e d w i t h chronic childhood i l l n e s s .
Some t h e o r i s t s have found
c e n t e r on e x t e n s i v e treatment 1970;
S t r a u s s , 1979).
that d i f f i c u l t i e s
regimens (McCollum & Gibson,
1970; R o s e n s t e i n ,
These may be so demanding t h a t they pose g r e a t e r
problems f o r the f a m i l y than do the symptoms of i l l n e s s . One of the major i l l n e s s problems f o r c h r o n i c a l l y s i c k
children
t h a t has been i d e n t i f i e d i n the l i t e r a t u r e i s the f e e l i n g of "being (Canam, 1980; Crosby, Strauss
1977;
K r u l i k , 1980; McCollum & Gibson,
different"
1970).
(1979) s t a t e s :
The c h i e f b u s i n e s s o f a c h r o n i c a l l y i l l person i s not j u s t t o s t a y a l i v e o r t o keep h i s symptoms under c o n t r o l , b u t t o l i v e as n o r m a l l y as p o s s i b l e d e s p i t e h i s symptoms and h i s d i s e a s e . I n the case o f c h r o n i c a l l y i l l c h i l d r e n , p a r e n t s work v e r y hard a t c r e a t i n g some semblance o f a normal l i f e f o r t h e i r o f f s p r i n g (p.110). The
sense of "being d i f f e r e n t " i s o f t e n exacerbated by the demands o f
m e d i c a l l y c o n s t r u c t e d treatment
regimens.
As a r e s u l t ,
p a t i e n t s and kinsmen i n e v i t a b l y e n t e r i n t o n e g o t i a t i o n s w i t h each o t h e r , and sometimes w i t h p h y s i c i a n s , over r e l a x i n g o r o t h e r w i s e changing... the regimen. They a r e n e g o t i a t i n g not o n l y over such matters as the e l i m i n a t i o n o f d i s c o m f o r t and s i d e - e f f e c t s , b u t a l s o the p o s s i b i l i t y o f making the management of o r d i n a r y l i f e e a s i e r or even p o s s i b l e (p.102).
20 Normalization
is a priority
f o r p a r e n t s and
however, founded on d i f f e r i n g p e r s p e c t i v e normalization of i l l
may
differ.
of i l l n e s s ,
health professionals; the meaning of
For example, Anderson (1981) found t h a t
c h i l d r e n set aside considerations
a semantic d e f i n i t i o n of normal t h a t was
of d i s e a s e when c o n s t r u c t i n g appropriate
Whereas, Hewitt et a l . (1970) found t h a t p h y s i c i a n s the c h i l d "as normal" r e g a r d l e s s
to t h e i r
circumstances.
recommended t r e a t i n g
of the c o n s t r a i n t s imposed by
illness.
These f i n d i n g s support the importance of c o n s i d e r i n g d i s c r e p a n c i e s expectations, The
p r i o r i t i e s , and
value
systems when care
i l l n e s s l i e s p r i m a r i l y w i t h the p a r e n t s and
how
(1967) s t a t e t h a t a t t e n t i o n must be
given
c u l t u r a l m i l i e u i n p r o d u c i n g or r e d u c i n g
1976;
Appley and
to the r o l e of the " s o c i a l s t r e s s " (p.11).
Feder (1978) argues t h a t we
to understand what the c h i l d ' s d e f i c i t means to him
Friedman
and
T h i s i s supported illness
and b e l i e f s of the p a r e n t s ,
cannot b e g i n
u n l e s s we
w h i l e s e v e r a l other
(Canam, 1980;
(1981) s t a t e s
Mattsson, 1972;
understand
t h e o r i s t s have
concluded that the c h i l d ' s adjustment i s d i r e c t l y r e l a t e d to adjustment
Trumbull
c u l t u r a l f a c t o r s a c t i n g i n the s i t u a t i o n (Calhoun et a l . ,
Ferguson & Webb, 1979).
the v a l u e s
task.
experience
s t u d i e s l i n k i n g f a m i l y r e a c t i o n s to a c h i l d h a v i n g c h r o n i c
w i t h s o c i a l and
childhood
that i t i s a s t r e s s f u l
the s t r e s s i s i n t e r p r e t e d .
in
negotiated.
i s w r i t t e n about the meaning of the i l l n e s s
f o r the p a r e n t s and
by
is
l i t e r a t u r e i n d i c a t e s t h a t management of c h r o n i c
However, l i t t l e
parents
S u l l i v a n & Selvaggio,
parental 1979).
that:
the coping mechanisms used by. the a d u l t f a m i l y members may be taken as r e p r e s e n t a t i v e of those used w i t h i n s e t s of f a m i l y r e l a t i o n s h i p s or the f a m i l y as a whole, i f we assume t h a t p a r e n t s s e t the tone f o r how the f a m i l y as a whole would respond (p.248).
21 Several
s t u d i e s have i l l u m i n a t e d the p e r v a s i v e ,
i n f l u e n c e of chronic 1980;
childhood
i l l n e s s on f a m i l y l i f e
disrupting
(Burton,
1975; Canam,
Hewitt e t a l . , 1970; S u l t z , S c h l e s i n g e r , Mosher & Feldman, 1972;
T a y l o r , 1981).
I t may mean s e p a r a t i o n
o f f a m i l y members, f i n a n c i a l h a r d -
ships, a l t e r e d patterns
o f s o c i a l i n t e r a c t i o n , s t r a i n e d communication
patterns,
family r e l a t i o n s h i p s .
and d i s t u r b e d
Chan and L e f f
(1982) s t a t e
t h a t " i l l n e s s not o n l y i n t e r r u p t s the growth and m a t u r a t i o n o f the c h i l d , but
a l s o s e v e r e l y d i s r u p t s the growth and m a t u r a t i o n o f h i s o r h e r p a r e n t s "
(p.9). one
I t f o l l o w s t h a t i n order
to grasp the r e a l i t y o f c h r o n i c
illness
must "have r e g u l a r , ongoing c o n t a c t w i t h the everyday l i v i n g and
accompanying f e e l i n g s o f the f a m i l y " Chronic
(Kaplan & M e a r i g , 1977, p.81).
i l l n e s s i s o f t e n c h a r a c t e r i z e d by u n p r e d i c t a b l e
which have u n c e r t a i n outcomes.
T h i s may r e s u l t i n the c h i l d b e i n g
as " a t r i s k " even when s/he f e e l s w e l l which K a s l of knowing t h a t r i s k f a c t o r s a r e p r e s e n t .
events perceived
(1975) s t a t e s i s a result
Levy's (1980) study found
that:
Some p a r e n t s looked upon a p a r t i c u l a r c h i l d as d i f f e r e n t from o t h e r c h i l d r e n . . . i n t h a t he or she i s l i k e l y t o become v e r y s i c k v e r y f a s t , even though they r e c o g n i z e d t h a t the p r e s e n t i l l n e s s was not severe (p.956). The
author termed these c h i l d r e n , "vulnerable c h i l d r e n . "
to note t h a t a l a r g e p r o p o r t i o n of c h r o n i c
illness.
c h i l d r e n " may h e l p
o f the v u l n e r a b l e
I t i sinteresting
c h i l d r e n had h i s t o r i e s
The concepts o f " a t r i s k s t a t u s " and " v u l n e r a b l e t o e x p l a i n the statementszof other w r i t e r s t h a t the
c h i l d a f f e c t e d by c h r o n i c
i l l n e s s i s frequently deprived
o f normal
e x p e r i e n c e s which may r e s u l t i n r e g r e s s i o n and a p r e c a r i o u s dependency and independency 1970).
life
b a l a n c e between
(Haraguchi, 1978; R o d r i g u e z , 1970; R o s e n s t e i n ,
22 Many t h e o r i s t s view the adjustment
t o c h r o n i c i l l n e s s as a
long-term p r o p o s i t i o n , i n t h a t new d i f f i c u l t i e s a r i s e a t d i f f e r e n t developmental Mattsson,
stages f o r b o t h the c h i l d
1972; McCollum & Gibson,
and the f a m i l y (Feder, 1978;
1970).
Calhoun e t a l . (1976) s t a t e
t h a t , as a r e s u l t , the p a r e n t s ' r e d e f i n i t i o n of the c h i l d i s an ongoing p r o c e s s which r e q u i r e s c o n s t a n t d e c i s i o n making. t h a t c h r o n i c i t y i s a more important
S e v e r a l authors
f a c t o r to adjustment
argue
than the s p e c i f i c
c l i n i c a l a t t r i b u t e s o f the c o n d i t i o n (Mattsson, 1972; P l e s s & Douglas, T h i s supports the importance
of e x p l o r i n g the c h r o n i c i l l n e s s
r a t h e r than s p e c i f i c c l i n i c a l c o n d i t i o n s .
1971).
experience
Canam (1980) has concluded
that,
f o r h e a l t h p r o f e s s i o n a l s t o be h e l p f u l to f a m i l i e s w i t h c h r o n i c a l l y i l l c h i l d r e n , they need to l i s t e n t o t h e f a m i l i e s i n o r d e r t o d i s c o v e r what meaning the i l l n e s s e x p e r i e n c e has f o r them. I n t h i s way the uniqueness o f each f a m i l y ' s e x p e r i e n c e can be combined w i t h the commonalities which most f a m i l i e s share, so t h a t a p p r o p r i a t e and t i m e l y s e r v i c e s can be o f f e r e d to every f a m i l y (p.86). H o s p i t a l i z a t i o n of a c h r o n i c a l l y i l l
c h i l d b r i n g s f a m i l i e s who
u s u a l l y manage i l l n e s s problems w i t h i n the home i n t o c o n t a c t w i t h the p r o f e s s i o n a l m e d i c a l system.
As such, i t o f f e r s h e a l t h p r o f e s s i o n a l s a
v a l u a b l e o p p o r t u n i t y to l i s t e n t o p a r e n t s a t a s i g n i f i c a n t p o i n t i n the chronic i l l n e s s experience. of s e r v i c e s o f f e r e d related
H o s p i t a l i z a t i o n i s a l s o a time when the m e r i t s
to these f a m i l i e s may be a s s e s s e d .
to h o s p i t a l i z a t i o n w i l l be b r i e f l y
reviewed
The l i t e r a t u r e
i n the f o l l o w i n g
s e c t i o n as a s p e c i f i c s t e p p i n g stone toward i n c r e a s e d . u n d e r s t a n d i n g o f the c h r o n i c i l l n e s s
experience.
H o s p i t a l i z a t i o n o f a C h r o n i c a l l y 111 C h i l d H o s p i t a l i z a t i o n i s c i t e d as a f r e q u e n t , s t r e s s f u l o c c u r r e n c e i n the c h r o n i c i l l n e s s experience* (Burton, 1975; Hayes M o r r i s e t a l . , 1982;
23 Mattsson,
1972; McCollum, 1975).
The important
w i t h which h o s p i t a l i z a t i o n o c c u r s . of
many long-term
In that i t i s a s i g n i f i c a n t
chronicity.
c h r o n i c i l l n e s s e x p e r i e n c e changes over time as c r i t i c a l
i s s u e s a r i s e w i t h d i f f e r e n t developmental family. of
facet
i l l n e s s e x p e r i e n c e s , h o s p i t a l i z a t i o n cannot be o v e r -
looked when one i s examining The
f a c t o r i s the frequency
stages o f the c h i l d and the
As a f a c e t of the i l l n e s s e x p e r i e n c e , one wonders i f the meaning
h o s p i t a l i z a t i o n a l t e r s i n c o n j u n c t i o n w i t h the i l l n e s s
A p o v e r t y o f theory c o n t r i b u t e s l i t t l e
trajectory.
t o h e a l t h p r o f e s s i o n a l s ' under-
s t a n d i n g of h o s p i t a l i z a t i o n w i t h i n the c o n t e x t o f a c h i l d ' s c h r o n i c illness.
However, work such as t h a t done by Hayes M o r r i s e t a l . (1982)
i s b e g i n n i n g to e s t a b l i s h a t h e o r e t i c a l b a s i s f o r n u r s i n g f a m i l i e s
having
chronically i l l children. Green (1982) and R o s e n s t e i n be f a m i l y f o c u s e d . understanding ted
(1970) argue t h a t o p t i m a l c a r e must
However, a t p r e s e n t , our i n t e r v e n t i o n s r e s t on an
of how h o s p i t a l i z a t i o n a f f e c t s c h i l d r e n when they a r e admit-
d u r i n g acute e p i s o d i c i l l n e s s e s
( B r a i n & Maclay, 1968; H i l l , 1978;
MacCarthy, L i n d s a y & M o r r i s , 1962; Prugh, Staub, Lenihan,
1953; Vaughan, 1957).
importance
Kleinman e t a l . (1978) have d i s c u s s e d the
o f n e g o t i a t i n g c a r e based
t i v e s h e l d by the people
Sands, Kirschbaum &
involved.
on an u n d e r s t a n d i n g
o f the p e r s p e c -
T h i s i n d i c a t e s the need to e x p l o r e
the p a r e n t s ' p e r c e p t i o n s o f h o s p i t a l i z a t i o n when the c o n t e x t i s c h r o n i c i l l n e s s , and i s s u b s t a n t i a t e d by Anderson's (1981) study which
found
t h a t the h o s p i t a l i z a t i o n o f a c h r o n i c a l l y i l l c h i l d i s p e r c e i v e d as different
than "normal" h o s p i t a l i z a t i o n .
One o f the c o n c l u s i o n s which
the author made was t h a t i t i s important
f o r p r a c t i t i o n e r s t o take the
24
f a m i l y ' s unique s i t u a t i o n i n t o account. P l e s s and
Douglas (1971) s t a t e that repeated h o s p i t a l i z a t i o n s
are l i k e l y to a f f e c t the s o c i a l and
p s y c h o l o g i c a l development of
c a l l y i l l c h i l d r e n which i s supported by Kagan and
Levi's
(1974) work.
These authors c l a s s i f y a c h i l d ' s a d m i s s i o n to h o s p i t a l as a stressor.
periods
psychosocial
McCollum (1975) argues t h a t i n a d d i t i o n to everyday
problems, c h r o n i c a l l y i l l c h i l d r e n f a c e a host of a d m i s s i o n to h o s p i t a l .
One
chroni-
illness
of u n c e r t a i n t i e s
during
can conclude t h a t because of
n a t u r e of the i l l n e s s e x p e r i e n c e , a p p r o p r i a t e
i n t e r v e n t i o n has
the
e n t i a l of h a v i n g an impact on the s i t u a t i o n a l concerns of p r e s e n t
the pot-
and
f u t u r e h o s p i t a l i z a t i o n s as w e l l as long-term i m p l i c a t i o n s f o r n e g o t i a t i n g s o l u t i o n s to everyday i l l n e s s problems.
Summary The
l i t e r a t u r e i n d i c a t e s t h a t when a c h i l d
member i s a f f e c t e d and
attempts to understand the i l l n e s s by
e x p e r i e n t i a l l y based e x p l a n a t o r y in
models.
experience.
constructing
These models e x p l a i n the
terms of the day-to-day problems of l i v i n g
the
i s i l l , each f a m i l y
t h a t are a s s o c i a t e d
illness with
F a m i l i e s of c h r o n i c a l l y i l l c h i l d r e n have a long-term
i l l n e s s e x p e r i e n c e which i n v o l v e s m u l t i p l e , complex i l l n e s s problems vary and
over time.
As
a r e s u l t , family l i f e
f a m i l y f u n c t i o n i n g may
be
i s often s i g n i f i c a n t l y altered
compromised.
P e d i a t r i c p r a c t i t i o n e r s are d i r e c t e d to view the p a r e n t s the i l l c h i l d as c l i e n t s i n r e l a t i o n to care d e l i v e r y . argue t h a t i n o r d e r
to p r o v i d e
optimal
time i s t h i s more important than d u r i n g
a frequently l i t t l e has
Several
and
authors
c a r e , h e a l t h p r o f e s s i o n a l s must
have a c l e a r u n d e r s t a n d i n g of the meaning a t t a c h e d no
that
r e c u r r i n g f a c e t of the c h r o n i c
to the i l l n e s s .
At
the c h i l d ' s a d m i s s i o n to h o s p i t a l , i l l n e s s experience.
However,
been w r i t t e n about h o s p i t a l i z a t i o n when i t o c c u r s i n the
context
of chronic childhood i l l n e s s .
As such, there i s l i t t l e information to
support an understanding of the parents' needs w i t h regard to care. Further i n v e s t i g a t i o n regarding
the parents' perspectives i s warranted.
This study has been designed to address the parents' perspect i v e s and has been guided, i n terms of methodology, by the i n t e r p r e t i v e school of research.
The methodology was introduced i n Chapter 1 and
w i l l be discussed as i t was used i n t h i s study.
now
Chapter 3 METHODOLOGY
The
t h e o r e t i c a l and m e t h o d o l o g i c a l
p e r s p e c t i v e which
guided
the study was d e r i v e d from the i n t e r p r e t i v e s c h o o l and i n c o r p o r a t e d aspects
of t h e phenomenological and grounded theory approaches.
This
chapter w i l l d e s c r i b e how the p e r s p e c t i v e was adapted f o r use i n the study. The
areas
to be addressed a r e s e l e c t i o n o f p a r t i c i p a n t s , data
and
data a n a l y s i s .
collection,
S e l e c t i o n of P a r t i c i p a n t s The
p a r t i c i p a n t s were s e l e c t e d by v i r t u e o f t h e i r s t a t u s as
expert witnesses
regarding
the chronic i l l n e s s experience.
T h i s i s because
u n l i k e most survey r e s e a r c h , i t i s n o t assumed t h a t a l l answers are e q u a l l y v a l i d and v a l u a b l e o r t h a t i t i s b e s t t o s e l e c t respondents randomly. I n s t e a d , the s e l e c t i o n f a v o r s persons who a r e e s p e c i a l l y knowledgeable w i t h r e g a r d to v a r i o u s a c t i v i t i e s and b o d i e s o f knowledge ( P e a r s a l l , 1965, p.40).
Criteria for Selection The study
c r i t e r i a f o r s e l e c t i n g t h e p a r e n t s who p a r t i c i p a t e d i n the
included:
- t h a t each f a m i l y have a c h r o n i c a l l y i l l
c h i l d between t h e ages o f one
month and 17 y e a r s who was u s u a l l y cared f o r i n the home; - t h a t t h e c h i l d be h o s p i t a l i z e d , b u t as c h r o n i c i t y was the s a l i e n t c o n t e x t u a l f a c t o r , t h i s was n o t to be a f i r s t not
to be t e r m i n a l l y
admission
and the c h i l d was
ill;
- t h a t a t l e a s t one parent
be a c c e s s i b l e f o r i n t e r v i e w s d u r i n g the p e r i o d
of the study; and, -26-
27 -
t h a t the p a r e n t s be a b l e t o converse
i n E n g l i s h r e g a r d l e s s of e t h n i c
background. As the study p r o g r e s s e d and the i n t e r v i e w s w i t h the i n i t i a l p a r t i c i p a n t s were a n a l y s e d a concern arose t h a t one a s p e c t o f the c h r o n i c i l l n e s s e x p e r i e n c e might i n f l u e n c e the p a r e n t s ' accounts.
The f i r s t
three
p a r t i c i p a n t s d i d not l i v e i n the g r e a t e r Vancouver a r e a which meant they had
travelled
some d i s t a n c e to b r i n g t h e i r c h i l d r e n t o h o s p i t a l and e n t a i l e d
s e p a r a t i o n o f the n u c l e a r f a m i l y . t i o n o f f a m i l y members might a f f e c t
The r e s e a r c h e r q u e s t i o n e d whether s e p a r a the p a r e n t s ' e x p e r i e n c e s
i n hospital.
Thus, one f u r t h e r c r i t e r i o n was added f o r the s e l e c t i o n of the l a s t
three
sets of parents: - t h a t the f a m i l y r e s i d e i n the G r e a t e r Vancouver a r e a . T h i s a l s o addressed
the concern t h a t the i n i t i a l
s e l e c t i o n of p a r e n t s
p r e c l u d e d p a r t i c i p a t i o n by the f a t h e r s .
Selection
Procedure
F a m i l i e s were s e l e c t e d from two Vancouver h o s p i t a l s . telephone c o n t a c t w i t h s e v e r a l head nurses
Through
from p r e v i o u s l y i d e n t i f i e d
wards and a s o c i a l worker, p a r e n t s who met t h e study's c r i t e r i a were identified.
One o f the h o s p i t a l s r e q u i r e d t h a t the r e s e a r c h e r o b t a i n the
a d m i t t i n g p h y s i c i a n ' s consent
t o approach the p a r e n t s r e g a r d i n g the study.
T h e r e f o r e , when t h i s a p p l i e d , w r i t t e n p e r m i s s i o n was secured from the p h y s i c i a n by the head nurse o r the r e s e a r c h e r .
Some of the f a m i l i e s were
i n t r o d u c e d t o the study and/or the r e s e a r c h e r by the a t t e n d i n g p h y s i c i a n or
the head n u r s e .
I n other i n s t a n c e s the r e s e a r c h e r made the i n i t i a l
contact independently.
A complete v e r b a l e x p l a n a t i o n o f the study was
g i v e n to the p a r e n t s by the r e s e a r c h e r i n f a c e t o f a c e c o n t a c t .
In
28
a d d i t i o n , a w r i t t e n e x p l a n a t i o n was p r e s e n t e d when t h e p a r e n t s gave t h e i r w r i t t e n consent t o p a r t i c i p a t e
(Appendix B) .
When b o t h p a r e n t s i n ":a
f a m i l y p a r t i c i p a t e d , t h e s t u d y was e x p l a i n e d t o b o t h b u t t h e s i g n a t u r e of one p a r e n t was deemed adequate c o n s e n t .
C h a r a c t e r i s t i c s of the P a r t i c i p a n t s S i x mothers and t h r e e f a t h e r s from s i x f a m i l i e s h a v i n g c h r o n i - r cally i l l
c h i l d r e n p a r t i c i p a t e d i n the study.
Three f a m i l i e s r e s i d e d i n
the G r e a t e r Vancouver a r e a w h i l e t h e o t h e r t h r e e l i v e d i n s m a l l e r B r i t i s h Columbia
c e n t e r s some d i s t a n c e from t h e h o s p i t a l s i n v o l v e d .
The f a m i l i e s
r e s i d i n g o u t s i d e t h e G r e a t e r Vancouver a r e a d i d have m e d i c a l c o n t a c t s i n t h e i r home community and t h e c h i l d r e n were o c c a s i o n a l l y h o s p i t a l i z e d when a c u t e problems,
such as pneumonia, a r o s e .
However, t h e s e
there
families
t r a v e l l e d t o Vancouver on a r e g u l a r b a s i s t o c o n s u l t w i t h s p e c i a l i s t s r e g a r d i n g t h e management o f ongoing i l l n e s s The p a r e n t s who agreed
problems.
t o p a r t i c i p a t e t y p i c a l l y f u n c t i o n e d as
p r i m a r y p r a c t i t i o n e r s i n t h a t they managed t h e i r c h i l d r e n ' s i l l n e s s e s on a day-to-day
b a s i s i n t h e home.
providing t o t a l care.
For s e v e r a l of the parents t h i s
entailed
I n a l l cases, the parents, i n c o n s u l t a t i o n w i t h
h e a l t h p r o f e s s i o n a l s , made t h e d e c i s i o n t o have t h e i r c h i l d a d m i t t e d t o hospital.
F o r two o f t h e f a m i l i e s , h o s p i t a l i z a t i o n was unexpected;
the o t h e r f o u r had a n t i c i p a t e d and planned
whereas,
the ^ c h i l d r e n ' s admissions.
The
h o s p i t a l i z a t i o n was u n d e r s t o o d by b o t h t h e p a r e n t s and t h e r e s e a r c h e r t o be a temporary
i n c i d e n t i n the c h r o n i c i l l n e s s experience.
A l l o f t h e f a m i l i e s were composed o f a mother and f a t h e r , and had one u s u a l l y w e l l c h i l d i n a d d i t i o n t o t h e i l l
child(ren).
Two o f t h e
f a m i l i e s had m u l t i p l e c h i l d r e n a f f e c t e d by c h r o n i c i l l n e s s due t o m e d i c a l
29 conditions living were
that
were
chronically
hospitalized
accounts from
refer
three
to
months
ously
stated
study
as a r e s u l t
genetic
i l l at
to
time
21 y e a r s .
criterion of
for
being
Each
family
ever,
were
congenital
was
The p a r e n t s were
Canadian born,
were
of
the
children views. while
one by
outside the
took
one that
of
the
The one
This
about
had
child
emigrated
were
This
that
the
who w a s
from
South America.
tended
to
as
be
the
were
the
with
older
parents'
than
in
age
the
involved
previ-
with
the
a seventeen year
old
medical
diagnosis,
None o f
primary
employed
in
how-
father's child's in
every
to
very
interview
life
the
set
blue
parents
were
available
sets
of
employed
person for
the
for
collar
inter-
jobs
consistent
partici-
circumstances.
three
families
participation
The
residing
by
the
fathers.
Vancouver area,
a l l
fathers
participation
illness
in
Four
mothers
Lack of
for
Greater
the
readily
members. related
and one
support
full-time
occurred
the
individuals.
Britain
p e r s o n most
employed adult
residing
participated
meant
English speaking
members w h i c h
his
whom
disorders.
from
one
of
one
s e v e n c h i l d r e n who v a r i e d
a different
seemed p r e d o m i n a n t l y
families
both
hospital
to
had
two,
admitted
coping with
fathers
However,
neither
As
of
had
families
s e l e c t i o n became
as w e l l
family
talking
study.
study.
these
participant
set
h a d no
other
Greater Vancouver area precluded
three
family
the
fathers
part.
found
of
family
separation
Of
hospital
Five
pation
one
home a n d s o
in
the
were w h i t e ,
German d e s c e n t
outside
of
One o f
the
hospitalization
sibling. a l l
origin.
c h i l d whereas
the
the
in
was
extremely
distressing.
which
appears
limited
as
Both parents related
to
the
he in fact
employed.
s e c t i o n has
introduced
described
earlier,
the
the
selection
interpretive
of
participants
perspective
directs
for the
the
30 use of c o n s t a n t comparative
a n a l y s i s which means t h a t the
processes
of d a t a c o l l e c t i o n and a n a l y s i s occur s i m u l t a n e o u s l y and are i n nature.
dialectic
However, f o r the purpose of c l e a r d e s c r i p t i o n , the
processes
w i l l be d i s c u s s e d s e p a r a t e l y i n the f o l l o w i n g two s e c t i o n s .
Data C o l l e c t i o n Procedure
f o r Data C o l l e c t i o n
The d a t a were c o l l e c t e d guided by q u e s t i o n s adapted The
r e s e a r c h e r was
through
i n - d e p t h i n t e r v i e w i n g which
from Kleinman e t a l . (1978)
concerned
w i t h e x p l o r i n g how
was
(see Appendix A ) .
p a r e n t s understood
and
e x p l a i n e d the c l i n i c a l r e a l i t y of h o s p i t a l i z a t i o n , a f a c e t of t h e i r e x p e r i ence w i t h c h r o n i c i l l n e s s , understanding
of t h e i r e x p l a n a t o r y models f o r i l l n e s s .
(1978) suggest
questions f o r e l i c i t i n g
which d i r e c t examination experience.
f o r the purpose of promoting
an enhanced Kleinman e t a l .
the c l i e n t ' s e x p l a n a t o r y model
of the c l i e n t ' s p e r c e p t i o n s of h i s / h e r i l l n e s s
These q u e s t i o n s were adapted
i n o r d e r to examine the p a r e n t s '
p e r c e p t i o n s of t h e i r e x p e r i e n c e w i t h the h o s p i t a l i z a t i o n of t h e i r c h r o n i cally
ill
c h i l d r e n and addressed
the g e n e r a l areas o f :
s h i p of h o s p i t a l i z a t i o n to the c h i l d ' s c h r o n i c i l l n e s s ;
(1)
of the h o s p i t a l i z a t i o n ; and
relation-
(2) e x p e c t a t i o n s
w i t h r e g a r d to the course and outcome of h o s p i t a l i z a t i o n ; impact
the
(3) p e r s o n a l
(4) the r o l e of the h e a l t h p r o f e s s i o n a l s
w i t h r e g a r d to the h o s p i t a l i z a t i o n . The and,
q u e s t i o n s served o n l y to i n i t i a t e i n t e r a c t i o n w i t h the
as such, not a l l the q u e s t i o n s were asked
of a l l the p a r e n t s .
d a t a c o l l e c t i o n began, the r e s e a r c h e r ' s q u e s t i o n s were generated to the p a r e n t s ' e x p l a n a t i o n s which enabled participants' perspectives.
in
i n - d e p t h e x p l o r a t i o n of
parents Once response
the
T h i s w i l l be d i s c u s s e d f u r t h e r i n the f o l l o w i n g
31 s e c t i o n on c o n s t r u c t i o n of accounts
and
i n t e r v i e w q u e s t i o n s has been p r o v i d e d The
e x p l a i n s why
14 i n t e r v i e w s w i t h
not to c o n s i d e r t h i s a time l i m i t .
the p a r e n t s were informed
45 minutes.
tape
T h i s e x p l a n a t i o n seemed
to t a l k w h i l e the c a s s e t t e
Most of the i n t e r v i e w s l a s t e d between 75 and
although
the a c t u a l c o n t a c t time w i t h
longer.
O c c a s i o n a l l y the r e s e a r c h e r had
stopped
t h a t they were
i n advance of the n e c e s s i t y to
adequate as most of the p a r e n t s c o n t i n u e d turned.
one hour but
A l l of the i n t e r v i e w s were
t u r n the c a s s e t t e a f t e r approximately
being
parents
When d a t a c o l l e c t i o n began, the p a r e n t s were t o l d
t h a t the i n t e r v i e w s would l a s t approximately
r e c o r d e d and
the
(Appendix A ) .
data were c o n s t r u c t e d through
from s i x f a m i l i e s .
o n l y a sample of
the p a r e n t ( s ) was terminated
90 minutes
often substantially
the i n t e r v i e w and
the tape r e c o r d e r when the parent resumed t a l k i n g about
r e l e v a n t to the study.
I t was
difficult
was
matters
to b e g i n tape r e c o r d i n g a g a i n
so
the r e s e a r c h e r summarized t h i s i n f o r m a t i o n i n w r i t i n g a f t e r l e a v i n g the r e s e a r c h encounter.
These summaries were used as f i e l d notes
s t r u c t i o n of the a n a l y t i c I t was
framework.
the i n t e n t of the r e s e a r c h e r to conduct
w i t h each of the p a r t i c i p a n t s i n o r d e r to and v e r i f y i n t e r p r e t a t i o n s of the d a t a . was
i n the con-
multiple interviews
c o n s t r u c t c o n s i s t e n t accounts The
a c t u a l number of i n t e r v i e w s
to be governed by the p a r e n t s ' w i l l i n g n e s s to p a r t i c i p a t e and
n a t u r e of the data b e i n g c o l l e c t e d . d a t a c o l l e c t i o n was occurrences:
i n one
terminated
However, w i t h two
a f t e r one
i n t e r v i e w due
participants, to unexpected
i n s t a n c e , the death of the i l l c h i l d and,
o t h e r , unexpected c o m p l i c a t i o n s i n the course of the c h i l d ' s which made the mother u n a v a i l a b l e f o r i n t e r v i e w .
the
i n the treatment
For the f a m i l i e s
who
r e s i d e d o u t s i d e the G r e a t e r Vancouver a r e a , the number of i n t e r v i e w s
was
l i m i t e d p r i m a r i l y by the l e n g t h of h o s p i t a l s t a y whereas the n a t u r e o f the data was a more prominent l i m i t i n g l i v i n g w i t h i n the a r e a .
f a c t o r f o r the p a r t i c i p a n t s
Of the f o u r f a m i l i e s not c i t e d :
one had two
i n t e r v i e w s ; two had t h r e e i n t e r v i e w s ; and, one had f o u r . In a l l i n s t a n c e s the mother was the i n i t i a l c o n t a c t p e r s o n and i n a l l but two i n s t a n c e s , the mother was the s o l e p a r t i c i p a n t i n the f i r s t interview.
For the f a m i l i e s r e s i d i n g i n the G r e a t e r
r e s e a r c h e r e x p l a i n e d a t the time of the f i r s t were i n v i t e d
to p a r t i c i p a t e .
were i n t e r v i e w e d
together
mother and f a t h e r p r e s e n t . separate
contact
When b o t h p a r e n t s
and, i n t o t a l ,
Vancouver a r e a , the that both
parents
chose to take p a r t ,
they
s i x i n t e r v i e w s were conducted
with
The p a r e n t s were not g i v e n the c h o i c e of
interviews. The
i n t e r v i e w s were conducted both i n the h o s p i t a l ; a n d , f o r two
f a m i l i e s , i n the home. hospital.
A s m a l l , p r i v a t e i n t e r v i e w room was u t i l i z e d
T h i s was an a r e a where the p a r e n t s
t a n t to s e v e r a l p a r t i c i p a n t s .
c o u l d smoke which was
i n the impor-
The d i s a d v a n t a g e of the arrangement was
t h a t t h e r e was o n l y one room a v a i l a b l e which took some p a r e n t s u n i t where t h e i r c h i l d was admitted.
o f f the
Two of the mothers d i d not wish to
l e a v e t h e i r c h i l d r e n so the i n t e r v i e w s were conducted i n the c h i l d r e n ' s rooms.
T h i s proved to be a s a t i s f a c t o r y arrangement f o r both f a m i l i e s as
they occupied
p r i v a t e rooms.
The i n t e r v i e w s were scheduled
a t the p a r e n t s '
convenience. Once tape r e c o r d i n g of the f i r s t parents being
expressed
nervousness over b e i n g
i n t e r v i e w was stopped many
tape recorded
and s u r p r i s e a t
a b l e to t a l k so e a s i l y and f o r such a l o n g p e r i o d .
t h i s i n i t i a l uneasiness, parents
a l s o expressed
the tape r e c o r d e r was v i r t u a l l y
concern about the r e l e v a n c e
However, beyond ignored.
of t h e i r ^ s t o r y
The to the
33 r e s e a r c h e r ' s a r e a of i n t e r e s t . r e g a r d i n g the importance
As a r e s u l t ,
feedback
from the r e s e a r c h e r
of t h e i r c o n t r i b u t i o n became i n t e g r a l to the
process. The r e l a t i o n s h i p which developed between the r e s e a r c h e r and
the
p a r t i c i p a n t s p r e s e n t e d a few d i f f i c u l t i e s when some f a m i l i e s were r e l u c t a n t to t e r m i n a t e a t the end of the r e s e a r c h encounter.
This i s l i k e l y
a r e f l e c t i o n o f the f a c t t h a t they found i t h e l p f u l to t a l k to a h e a l t h p r o f e s s i o n a l who cess was
was
truly interested i n listening.
The
termination pro-
f a c i l i t a t e d by c l e a r l y e s t a b l i s h i n g a t e r m i n a t i o n i n t e r v i e w .
C o n s t r u c t i o n of
Accounts
As p r e v i o u s l y s t a t e d , the d a t a were c o n s t r u c t e d through
14
in^depth.'interviews w i t h p a r e n t s from s i x f a m i l i e s h a v i n g a h o s p i t a l i z e d , chronically i l l t h a t comprise
child.
I t i s the p a r e n t s ' accounts of t h e i r
the d a t a f o r t h i s
experience
study.
In t h i s k i n d of r e s e a r c h , d a t a a r e c o n s t r u c t e d through research act; ipant.
The
t h a t i s , through
i n t e r a c t i o n between r e s e a r c h e r and
i n t e r a c t i o n i n t h i s study was
l i n e d i n the i n t e r v i e w guide
the partic-
i n i t i a t e d by the q u e s t i o n s o u t -
(Appendix A) but was
s u s t a i n e d through
the
i n t e r p l a y of q u e s t i o n s and answers a r i s i n g from the d a t a c o l l e c t i o n p r o cess.
That i s , the q u e s t i o n s which arose i n the mind of the r e s e a r c h e r
were i n d i r e c t response
to the answers g i v e n by the p a r t i c i p a n t s and were
used a l o n g w i t h r e f l e c t i v e statements Thus, i t was The
the i n f o r m a n t s who
to e l i c i t
in-depth explanations.
guided the course of d a t a
collection.
c o n s t r u c t i o n of accounts assumed a ground of common under-
s t a n d i n g between the r e s e a r c h e r and p a r t i c i p a n t .
Both i n d i v i d u a l s
a w e a l t h of s o c i o - c u l t u r a l e x p e r i e n c e to the r e s e a r c h i n t e r a c t i o n .
bring
34 G i v e n t h i s v a r i a t i o n i n background, assumptions may i n f a c t be f a l s e .
regarding understanding
T h e r e f o r e , i t was important t o c o n t i n u a l l y
i d a t e t h e accounts as they were b e i n g c o n s t r u c t e d .
val-
As L o f l a n d (1978)
p o i n t s out, i t i s through the i n t e r p l a y of i n - d e p t h e x p l o r a t i o n t h a t i n t i m a t e f a m i l i a r i t y w i t h the d a t a i s a c h i e v e d . r e s e a r c h e r , t h e w r i t e r may have i n i t i a l l y common u n d e r s t a n d i n g .
Being a b e g i n n i n g
assumed too g r e a t a l e v e l o f
However, as d a t a c o l l e c t i o n p r o g r e s s e d ,
ences i n u n d e r s t a n d i n g became more apparent more r i g o r o u s l y which y i e l d e d a r i c h e r
differ-
and the d a t a were e x p l o r e d
account.
E t h i c a l Considerations T h i s study was conducted w i t h t h e a p p r o v a l o f t h e U n i v e r s i t y of B r i t i s h Columbia's jects.
I n v o l v i n g Human Sub-
The r i g h t s o f the p a r t i c i p a n t s were safeguarded A.
1.
S c r e e n i n g Committee f o r Research
Informed
Consent
i n t h e f o l l o w i n g ways:
and R i s k / B e n e f i t
The i n i t i a l v e r b a l e x p l a n a t i o n and w r i t t e n consent
(Appendix
B) gave
the c l e a r o p t i o n o f p a r t i c i p a t i o n or n o n p a r t i c i p a t i o n w i t h o u t p r e j u d i c e . 2.
The w r i t t e n consent s t a t e d t h a t withdrawal
from t h e study c o u l d
occur a t any time. 3.
The w r i t t e n consent informed p a r t i c i p a n t s t h a t they c o u l d r e f u s e t o
answer any q u e s t i o n s . 4.
P o t e n t i a l b e n e f i t s were o u t l i n e d i n t h e w r i t t e n consent
were d i s c u s s e d w i t h t h e p a r e n t s .
form and
Many p a r e n t s e x p e r i e n c e the b e n e f i t o f
b e i n g a b l e t o t a l k to a h e a l t h p r o f e s s i o n a l who g i v e s wholehearted to
t h e i r concerns.
Morris et a l . , experience.
T h i s i s supported by the l i t e r a t u r e
attention
(Canam,._i980; Hayes
1982; McCollum & Gibson, 1970; Smith, 1974) and by t h e w r i t e r ' s
35 5.
The w r i t t e n consent informed p a r t i c i p a n t s t h a t , as the
v e r s a t i o n s were to be
tape r e c o r d e d ,
tape or p o r t i o n of a tape at any B. 1.
they c o u l d request
time d u r i n g
the
erasure
conof
any
study.
Privacy
P r i v a c y was
insured during
the i n t e r v i e w s
(this necessitated
some i n t e r v i e w i n g away from the h o s p i t a l s e t t i n g , f o r example, i n the f a m i l y ' s home). C. 1.
Confidentiality
Access to the data was
l i m i t e d to the r e s e a r c h e r
and
her
advisory
committee. 2.
Tape r e c o r d i n g s were s t o r e d under l o c k and
key
i n a l o c a t i o n sep-
a r a t e from the t r a n s c r i p t i o n s . 3.
T r a n s c r i p t i o n s were coded w i t h
s u b j e c t i d e n t i t y known o n l y to
the
researcher. 4.
T r a n s c r i p t i o n s were s t o r e d under l o c k and
5.
P a r t i c i p a n t s were never i d e n t i f i e d w i t h
6.
P a r t i c i p a n t s ' i d e n t i t i e s were not
key.
their
responses.
revealed.
Data A n a l y s i s As L o f l a n d
(1971) s t a t e s , "one's a n a l y t i c and
a c t i v i t i e s run c o n c u r r e n t l y . and
a n a l y t i c work" (p.118).
the r e s e a r c h e r was explanations
There i s temporal o v e r l a p p i n g T h i s meant t h a t d u r i n g
attempting
contacts with p a r t i c i p a n t s .
of
observational
the i n t e r v i e w i n g phase,
to make some a b s t r a c t sense of the
of t h e i r r e a l i t y .
of study the a p p r o p r i a t e n e s s
observational
Aamodt (1982) p o i n t s out
parents'
that i n t h i s
of the a b s t r a c t i o n s i s i n s u r e d
through
type
repeated
36
P r i o r t o b e g i n n i n g f o r m a l a n a l y s i s , and a f t e r each i n t e r v i e w , the c a s s e t t e tapes were t r a n s c r i b e d v e r b a t i m .
S t e r n (1980) a r t i c u l a t e d
t h r e e a s p e c t s o f t h e a n a l y t i c p r o c e s s w h i c h a d e q u a t e l y d e s c r i b e t h e anal y s i s that occurred during t h i s study.
The f i r s t s t e p was t o s y s t e m a t i c a l l y
r e v i e w t h e t r a n s c r i p t i o n and s i m p l y code t h e d a t a a c c o r d i n g t o s u b s t a n c e . Coding o f t h e d a t a was c a r r i e d out d u r i n g i n t e r v i e w i n g and t r a n s c r i p t i o n as w e l l as d u r i n g f o r m a l a n a l y s i s . clustering related pieces.
Then t h e d a t a were c a t e g o r i z e d by
T h i r d l y , concepts were formed and an a n a l y t i c
framework was c o n s t r u c t e d from t h e d a t a .
Each s t a g e o f a n a l y s i s i n v o l v e d
a r e l a t i v e l y higher l e v e l of a b s t r a c t i o n which r e q u i r e d c o n t i n u a l v a l i d a t i o n against concrete observations.
Both t h e c a t e g o r i e s a r i s i n g from t h e
second s t e p and t h e concepts o f t h e t h i r d were dynamic i n t h e i r
relation-
s h i p s w h i c h meant t h a t r e l a b e l l i n g and r e o r g a n i z a t i o n o c c u r r e d many times throughout
the a n a l y t i c process.
As i t was t h e r e s e a r c h e r ' s i n t e n t t o
p r e s e n t d a t a w h i c h enhance u n d e r s t a n d i n g
o f t h e shared a s p e c t s o f t h e
p a r e n t s ' a c c o u n t s , a n a l y s i s i n v o l v e d c o n s t a n t comparison among t h e participants' explanations.
Summary
t
The methodology used i n t h i s study was guided by t h e i n t e r p r e t i v e p e r s p e c t i v e and i n c o r p o r a t e d a s p e c t s o f t h e phenomenological grounded t h e o r y approaches.
and
P a r t i c i p a n t s were s e l e c t e d by v i r t u e o f t h e i r
s t a t u s as e x p e r t w i t n e s s r e g a r d i n g t h e h o s p i t a l i z a t i o n o f a c h r o n i c a l l y child.
ill
I n t o t a l , s i x mothers and t h r e e f a t h e r s from s i x f a m i l i e s h a v i n g a
hospitalized chronically i l l
c h i l d p a r t i c i p a t e d i n the study.
37 The d a t a were c o l l e c t e d through
14 i n - d e p t h i n t e r v i e w s which were
i n i t i a t e d using a semi-structured interview schedule.
Although
i t was
the i n t e n t of the r e s e a r c h e r to conduct m u l t i p l e i n t e r v i e w s w i t h each of the p a r t i c i p a n t s , unexpected i n t e r v i e w e d o n l y once.
o c c u r r e n c e s r e s u l t e d i n two p a r e n t s b e i n g
Of the o t h e r f a m i l i e s :
one had two i n t e r v i e w s ;
two had t h r e e i n t e r v i e w s ; and, one had f o u r . The
d a t a were comprised
of the p a r e n t s ' accounts
of t h e i r
ill-
ness e x p e r i e n c e s i n the h o s p i t a l s e t t i n g .
These accounts were c o n s t r u c t e d
through
the i n t e r a c t i o n between p a r -
the r e s e a r c h a c t ; t h a t i s , through
t i c i p a n t and r e s e a r c h e r .
Data c o l l e c t i o n proceeded
the mind of the r e s e a r c h e r i n response i n t e r p l a y enabled
as q u e s t i o n s arose i n
to the p a r e n t s ' answers.
This
the i n - d e p t h e x p l o r a t i o n of the p a r e n t s ' p e r s p e c t i v e s .
The p a r t i c i p a n t s ' r i g h t s i n terms of informed f i d e n t i a l i t y were safeguarded
throughout
consent, p r i v a c y and con-
the r e s e a r c h p r o c e s s .
Data a n a l y s i s o c c u r r e d b o t h c o n c u r r e n t l y w i t h , and subsequently to d a t a c o l l e c t i o n .
Three s t e p s d e s c r i b e d the a n a l y t i c p r o c e s s :
first,
the d a t a were coded a c c o r d i n g to c o n t e n t ; then, the d a t a were c a t e g o r i z e d by c l u s t e r i n g r e l a t e d p i e c e s ; and t h i r d l y , concepts were formed and an a n a l y t i c framework was developed.
Constant
comparative
analysis
resulted
i n the r e l a b e l l i n g of concepts
and r e o r g a n i z a t i o n of the framework many
times
The f i n d i n g s of t h i s study w i l l be p r e s e n t e d
throughout
the p r o c e s s .
i n the f o l l o w i n g c h a p t e r which d i s c u s s e s the p a r e n t s ' accounts experience.
of t h e i r
Chapter THE
4
PARENTS' ACCOUNTS
T h i s chapter w i l l p r e s e n t the p a r t i c i p a n t s '
accounts
e x p e r i e n c e w i t h the h o s p i t a l i z a t i o n o f t h e i r c h r o n i c a l l y
ill
of t h e i r
child.
While
r e c o g n i z i n g the unique n a t u r e o f each f a m i l y ' s e x p e r i e n c e and i t s r e f l e c t i o n i n the p a r e n t s ' accounts,
i t i s the i n t e n t
d a t a which enhance u n d e r s t a n d i n g periences.
o f t h e shared a s p e c t s o f the p a r e n t s ' ex-
Thus the s i m i l a r i t i e s which a r e apparent
been o r g a n i z e d a c c o r d i n g t o u n i f y i n g The p a r e n t s l o c a t e d
ness w i l l be the f i r s t discussion.
among the accounts
have
c a t e g o r i e s and themes.
h o s p i t a l i z a t i o n w i t h i n the context o f t h e i r
experience with chronic i l l n e s s .
further
of t h i s study t o p r e s e n t
Therefore, the t r a j e c t o r y
of c h r o n i c
ill-
a r e a p r e s e n t e d and w i l l p r o v i d e the framework f o r
The two c a t e g o r i e s which seem most s i g n i f i c a n t i n
terms of how p a r e n t s understand
and e x p l a i n
termed " i n t e r f a c e w i t h b u r e a u c r a c y "
t h e i r e x p e r i e n c e have been
and " r e l a t i o n s h i p s
i n the h o s p i t a l
setting." During h o s p i t a l i z a t i o n , p a r e n t s i n t e r f a c e between the bureaucracy and
their child.
The meaning g i v e n t o the i n t e r f a c e w i l l be d i s c u s s e d i n
r e l a t i o n t o the f o l l o w i n g
themes:
p a r e n t s p e r c e i v e t o be n e c e s s a r y to c o n t r o l
the a c q u i s i t i o n o f i n f o r m a t i o n which to t h e i r understanding;
and, p a r e n t s ' need
c e r t a i n a s p e c t s o f the i l l n e s s e x p e r i e n c e i n h o s p i t a l
c h i l d and f o r themselves.
Associated with the parents' p o s i t i o n at the
i n t e r f a c e between the h o s p i t a l bureaucracy relationships discussed are:
f o r the i l l
among the people
involved.
and t h e i r s i c k c h i l d a r e the The two themes which w i l l be
the r e l a t i o n s h i p between parent and s i c k c h i l d and the
r e l a t i o n s h i p between parent and h e a l t h -38-
professional.
39 The T r a j e c t o r y of C h r o n i c
Illness
When the p a r e n t s t a l k e d about the h o s p i t a l i z a t i o n o f t h e i r chronically i l l
c h i l d they l o c a t e d i t w i t h i n the c o n t e x t o f d e a l i n g w i t h
c h r o n i c i l l n e s s on a day-to-day b a s i s .
T h i s ongoing
illness
experience
can be d e p i c t e d by a t r a j e c t o r y which i s c h a r a c t e r i z e d by long-term t i o n and shape.
H o s p i t a l i z a t i o n i s viewed as a f a c e t o f t h i s
r a t h e r than as a d i s c r e t e i n c i d e n t o r as independent
dura-
trajectory
o f day-to-day
coping.
P a r e n t s e x p l a i n e d the meaning o f h o s p i t a l i z a t i o n by d i s c u s s i n g i t w i t h i n the c h r o n i c i l l n e s s s t o r y and wanted t o b e g i n a t the b e g i n n i n g i n o r d e r to recount
the l o g i c a l sequencing
of t h e i r
experience.
M:
I might as w e l l s t a r t from the b e g i n n i n g , eh?
M:
W e l l , how 'bout
i f we s t a r t when we f i r s t went i n ?
Another mother put the c u r r e n t h o s p i t a l i z a t i o n i n c o n t e x t t h i s way: M:
But he's had h i s h i p s operated on t w i c e . He's had major h i p s u r g e r y on those when he had the p i n s put i n . He got staph i n f e c t i o n so he had t o go and have t h a t c l e a r e d up, and came back - and t h a t d i d n ' t work so they had t o o p e r a t e and d i g i t out - looked l i k e they'd taken a f r e s h tub of l a r d and j u s t scooped a "tablespoon o f i t out except they took i t w i t h f l e s h .
I:
Oh.
M:
And then of course I had to take him home l i k e t h a t and i t had to s t a y open. They wouldn't put s t i t c h e s i n cause they d i d n ' t want any f o r e i g n matters i n t h e r e . So we had t o , to be v e r y c a r e f u l w i t h t h a t .
I:
Uh huh
M:
So we got a l l t h a t s t r a i g h t e n e d away f i n a l l y and then what e l s e - of course h i s back and h i s shunt and he had h e r n i a s when he came down a t s i x months o l d and he had t o have those out. And urn, l e t ' s see what e l s e - and now h i s b l a d d e r .
I:
¥h huh
M:
And he's had h i s , a p r o l a p s e worked on b u t i t d i d n ' t work.
40
In
I:
A rectal?
M:
Ya. And uh, he w i l l p r o b a b l y e v e n t u a l l y have t o have h i s t e s t i c l e s brought down cause t h e y ' r e s t i l l up.
a d d i t i o n t o d e s c r i b i n g h o s p i t a l i z a t i o n as p a r t o f a sequence o f events,
the p a r e n t s e x p l a i n e d t h a t h o s p i t a l i z a t i o n a l s o had a p a r t i c u l a r " f i t " w i t h the ongoing
experience.
F o r many o f the f a m i l i e s ,
conceptual
hospitaliza-
t i o n had been i n c o r p o r a t e d as p a r t o f t h e i r normal r o u t i n e . M:
I used to be v e r y wary about going to d o c t o r s and h o s p i t a l s and t h a t , and now i t j u s t seems as though i t ' s a everyday t h i n g , even though i t ' s n o t .
M:
Um, but over the p a s t couple of y e a r s we're i n the r o u t i n e of i t now t h a t i t doesn't r e a l l y b o t h e r us anymore.
M:
I mean r e a l l y , when they come i n , I mean i t ' s j u s t a normal thing. I mean I don't even t h i n k about i t anymore. I j u s t pack my t h i n g s and the k i d s ' .
T h i s p a r t i c u l a r " f i t " seems a s s o c i a t e d w i t h an i l l n e s s e x p e r i e n c e o f l o n g term d u r a t i o n and appeared t o f a c i l i t a t e coping i n t h a t h o s p i t a l i z a t i o n was accepted
as p a r t o f l i v i n g w i t h
illness.
M:
W e i l l f o r the f i r s t , f o r the f i r s t w h i l e i t was r e a l l y h e c t i c . Ill mean I d i d n ' t know whether I was coming o r going and then I was w o r r i e d about the o t h e r k i d s a t home.
I:
Mm hm
M:
And e v e r y t h i n g e l s e , but now i t ' s j u s t f a l l e n i n t o r o u t i n e j u s t l i k e everyday l i f e r o u t i n e s o r t of type t h i n g . I t ' s e a s i e r t o pack up now and l e a v e everybody behind than i t was, say, s i x months ago.
Even p a r e n t s who were r e l a t i v e l y e a r l y i n the i l l n e s s e x p e r i e n c e ted
a sense of knowing t h a t h o s p i t a l i z a t i o n was p a r t of a long-term
t r a j e c t o r y and t h a t the ongoing to
articulari
e x p e r i e n c e would i n f l u e n c e t h e i r
ability
cope. M:
I know i t ' s p r o b a b l y not the l a s t
time t h a t I'm here s o , t h a t
41 she's here so, g e t t i n g prepared f o r t h a t . F:
W e l l we know t h a t t h a t ' s what the d o c t o r has s a i d b e f o r e , and uh, i t ' s , you know - he's s a i d i t b e f o r e t h a t he's going to have t o come back anyways. I t ' s j u s t a q u e s t i o n o f time. So I guess you have t o keep t h a t i n the back of your mind.
M:
W e l l i t ' s q u i t e a w h i l e a l r e a d y t h a t t h i s has been going on s e e , and almost every week t h e r e ' s another problem coming up so you k i n d o f , you k i n d of l e a r n - and, w e l l i t w i l l come. I know i t w i l l come a f t e r a w h i l e you know, a f t e r months o r whatever, and y e a r s .
The parents''accounts have d e s c r i b e d t h e i r sense o f the t r a j e c t o r y ; is,
i t has a b e g i n n i n g , an ongoing
that
course t h a t i s l a r g e l y u n p r e d i c t a b l e ,
and an unknown end. Several parents explained t h e i r understanding of h o s p i t a l i z a t i o n as a f a c e t o f a more encompassing i l l n e s s e x p e r i e n c e by d e s c r i b i n g c h i l d ' s h o s p i t a l i z a t i o n as d i f f e r e n t to acute
their
from t h a t which o c c u r s i n r e l a t i o n
illness.
M:
And um, I'm sure i f the c h i l d r e n were w e l l enough, i f they were up and r u n n i n g around - i f they were j u s t i n f o r t o n s i l s or adenoids o r something minor, you know - i f one o f the o t h e r mothers wanted to s t a y w i t h my c h i l d , i f i t was i n t h a t case then I c o u l d go shopping f o r an hour o r s o .
M:
I don't know how people do i t t h a t a r e n o t i n h o s p i t a l t h a t long. I have been i n h o s p i t a l so l o n g t h a t I have enough, um enough, l o t s o f um, what do you say, time t o t a l k about i t here.
I:
Mm hm, mm hm
M:
And I don't know how people do i t t h a t they a r e j u s t a s h o r t stay. But I guess i f they a r e j u s t a s h o r t s t a y , they don't have a c h r o n i c a l d i s e a s e . The, the acute d i s e a s e p r o b a b l y i s different. I t i s apparent
t h a t the impact
o f h o s p i t a l i z a t i o n on the c o u r s e
of the i l l n e s s t r a j e c t o r y i s n o t l i m i t e d t o the d u r a t i o n of the a c t u a l admission
to h o s p i t a l .
42 M:
I t takes me, l e t ' s see - i t takes me about a week t o p r e pare myself b e f o r e I can even come down here, m e n t a l l y .
M:
When I go home i t w i l l take me a good'week t o even want to do a n y t h i n g . But I w i l l f e e l g u i l t y because I'm s i t t i n g t h e r e not doing a n y t h i n g , t h i n k i n g t h a t I should be d o i n g t h i n g s t h a t I d i d n ' t do w h i l e I was here f i n h o s p i t a l ] .
M:
And I found t h a t one s i x months t h a t he d i d n ' t come i n t o h o s p i t a l I saw a b i g change - i n h i s p e r s o n a l i t y , i n um, oh now l e t ' s see - the way he would do t h i n g s .
I:
Mm hm
M:
He c o m p l e t e l y , he matured. He never seemed t o go backwards a f t e r t h a t , he j u s t kept g o i n g forwards and forwards. Whereas everytime he comes t o the h o s p i t a l he has to t u r n around and s t a r t um, b u i l d i n g a g a i n - now n o t n e c e s s a r i l y i n m a t e r i a l t h i n g s but as f a r as uh, as I say d o i n g t h i n g s f o r h i m s e l f .
M:
Mm hm, and the l a s t one he, I t h i n k uh, the l a s t one was, w e l l I guess i t was the b i g g e s t one he had, I don't know. H i s l e g was t i l t e d so uh, I understand t h a t he had t o c u t r i g h t through h i s l e g - I don't know. And um, he's never been the same. He's r e a l l y n o t p i c k e d up s i n c e then. He c o u l d d r i n k through a straw when He went i n Cto h o s p i t a l ] b u t n o t s i n c e he's had that l a s t one [ o p e r a t i o n ] .
Thus i t seems f o r p a r e n t s of c h r o n i c a l l y i l l
c h i l d r e n , that
hospitaliza-
t i o n i s p e r c e i v e d as h a v i n g complex i m p l i c a t i o n s f o r the ongoing experience.
illness
As i l l u s t r a t e d by t h e l a s t account, h o s p i t a l i z a t i o n f r e q u e n t l y
r e s u l t e d i n the unexpected
c r e a t i o n o f new i l l n e s s problems which the
p a r e n t s took i n t o c o n s i d e r a t i o n when e v a l u a t i n g the success of the endeavor.
The p a r e n t s appeared
to understand
t h a t cure i s n o t a r e a s o n -
a b l e e x p e c t a t i o n w i t h r e g a r d t o t h e i r c h i l d ' s c h r o n i c i l l n e s s and so judged
the success o f h o s p i t a l i z a t i o n i n terms o f the o v e r a l l impact on
the c o u r s e o f the t r a j e c t o r y .
43 M:
But uh, I have, of course everybody I t a l k to they say w e l l , you know, t h a t sounds t e r r i b l e . I says w e l l , I know so and so and they've got t h i s and t h i s - and t h e i r c h i l d w i l l never walk and I says as f a r as I'm concerned going through t h i s so he can walk and l e a d a f a i r l y normal l i f e l a t e r , I says i t ' s been worth i t .
M:
At the b e g i n n i n g i t seemed l i k e guinea p i g s .
I:
Mm
M:
They were g i v i n ' her, t a k i n ' so much b l o o d out of her and doing, doing so many t e s t s on her, you know. I t h i n k i t ' s a l l worth i t because she's a l o t b e t t e r o f f now than she was two . y e a r s ago.
they were j u s t u s i n g her f o r
hm
H o s p i t a l i z a t i o n was
o f t e n e x p l a i n e d i n terms of changes i n the
c h i l d ' s i l l n e s s which r e s u l t e d i n major i l l n e s s problems f o r the p a r e n t s when they r e t u r n e d home.
The
M:
And then w i t h the oxygen, we needed t h a t r i g h t away. L i k e they d i d n ' t want to l e t her out of the h o s p i t a l l a s t time u n l e s s we had oxygen of our own at home.
M:
I've been stuck a t home - l i k e when he was i n h i s l a s t c a s t , l a s t summer i t was t h r e e months and I was home 24 hours a day w i t h him because he c o u l d n ' t go out anywhere. I c o u l d n ' t c a r r y him - he was too heavy, too cumbersome - c o u l d n ' t get him i n t o the c a r -.because he was s p r e a d - e a g l e d .
f o l l o w i n g account
r e f e r s to p a r e n t s who
were unaware of t h e i r
child's
a l l e r g i e s , so h o s p i t a l i z a t i o n meant a change i n t h e i r p e r c e p t i o n of child's
um,
the
illness.
M:
Mm hm. J u s t l i k e today on the way up here we were t a l k i n g . The a l l e r g y people are gonna be s e e i n g us - now we know t h a t he's got a l o t of a l l e r g i e s and he's p r o b a b l y got a l l e r g i e s to a n i m a l s , to dust - almost e v e r y t h i n g .
F:
C i g a r e t t e smoke - e v e r y t h i n g .
M:
C i g a r e t t e smoke and e v e r y t h i n g . So we're, w e ' l l q u i t smoking i n the house. W e ' l l have to get r i d of the c a t s , we're going to have t o wash down the w a l l s , shampoo the c a r p e t s , get i t s p i c and span - but s t i l l you can't r e a l l y keep up w i t h a l l the dust and s t u f f .
44 As can be seen from the p r e v i o u s a c c o u n t s , changes
i n the
c h i l d ' s c o n d i t i o n which a r e accommodated w i t h i n the scope o f "normal" r o u t i n e i n the h o s p i t a l s e t t i n g may cause complex management problems i n the home.
Thus,
the p a r e n t s ' i l l n e s s e x p e r i e n c e may be s i g n i f i c a n t l y
a f t e r i n c i d e n t s of h o s p i t a l i z a t i o n .
However, the p a r e n t s appeared
altered
wil-
l i n g t o a c c e p t many d i f f i c u l t i e s as l o n g as they p e r c e i v e d the outcome t o be p o s i t i v e i n terms o f t h e i r c h i l d ' s
health.
I t seems t h a t h o s p i t a l i z a t i o n b r i n g s many o f the concerns a s c r i b e d to the c h r o n i c i l l n e s s e x p e r i e n c e i n t o acute f o c u s .
Two of these a r e :
u n p r e d i c t a b i l i t y r e g a r d i n g the course of the i l l n e s s and u n c e r t a i n t y outcome.
about
S e v e r a l p a r e n t s e x p l a i n e d t h e i r w o r r i e s i n the f o l l o w i n g ways:
M:
You know i t happens and you take i t i n your s t r i d e and you get through t h i s one and you j u s t s i t back. I know, w e l l , we're f r e e a g a i n f o r another month - I says I wonder what w i l l happen. So I s i t here everyday, I come i n and I wonder what's g o i n g t o happen today t h a t ' s going t o keep us here (in hospital).
M:
Sometimes w e ' l l come down f o r a week and end up s t a y i n g two months or sometimes w e ' l l come prepared t o s t a y t h r e e weeks and end up s t a y i n g t h r e e days. And, so we never know, from the time we pack up t o go we never know how l o n g w e ' l l be here.
F:
You never know, cause even they don't know. They j u s t keep going a t a d i f f e r e n t s t r i d e t r y i n g t h i s and t r y i n g t h a t . So i t ' s j u s t as easy f o r us t o t r y o u r s e l v e s except f o r i t ' s a l i t t l e more s c a r y because of we don't r e a l l y know when he has a r e a c t i o n t h a t , what he's r e a c t i n g t o , o r how to handle it. In summary, i t seems t h a t p a r e n t s p e r c e i v e the h o s p i t a l i z a t i o n
of t h e i r c h r o n i c a l l y i l l
c h i l d to be a f a c e t o f the ongoing
e x p e r i e n c e which may be p i c t u r e d as a t r a j e c t o r y .
Thus,
illness
hospitalization
i s i n t e r p r e t e d i n r e l a t i o n t o p a s t e x p e r i e n c e , p r e s e n t impact on the course
45 of the t r a j e c t o r y and a n t i c i p a t e d
future
ramifications.
to be the major o r g a n i z i n g f a c t o r
f o r the e x p e r i e n c e and p r o v i d e d the
common bond among the p a r e n t s who p a r t i c i p a t e d parent t h a t
Chronicity
i n the study.
seems
I t i s ap-
i n o r d e r to f u l l y a p p r e c i a t e the meaning p a r e n t s g i v e t o the
h o s p i t a l i z a t i o n of t h e i r c h r o n i c a l l y
ill
c h i l d , one must c o n s i d e r the
p a r t i c u l a r frame o f r e f e r e n c e w i t h i n
which the e x p e r i e n c e i s c o n s t r u c t e d .
S e v e r a l themes which appear p a r t i c u l a r l y s i g n i f i c a n t t o the p a r e n t s ' accounts o f h o s p i t a l i z a t i o n w i l l be p r e s e n t e d i n g two s e c t i o n s
e n t i t l e d Interface
i n the H o s p i t a l
Interface
in
w i t h the Bureaucracy and R e l a t i o n s h i p s
Setting.
w i t h the Bureaucracy During the h o s p i t a l i z a t i o n o f t h e i r c h r o n i c a l l y
p a r e n t s by n e c e s s i t y delivery
the f o l l o w -
system.
ill
come i n t o c o n t a c t w i t h the b u r e a u c r a c y o f the h e a l t h
The p o s i t i o n
care
they seem t o occupy i s one o f i n t e r f a c i n g
between the b u r e a u c r a c y and t h e i r c h i l d , t h a t
i s , i t appears the p a r e n t s
p e r c e i v e t h e i r r o l e as one o f m e d i a t i n g t h e i r c h i l d ' s i l l n e s s within
child,
the bureaucratic setting.
experience
Three themes seem p a r t i c u l a r l y dominant
i n r e l a t i o n to the p a r e n t s ' r o l e d u r i n g h o s p i t a l i z a t i o n :
acquiring
informa-
t i o n , managing the c h i l d ' s i l l n e s s e x p e r i e n c e i n h o s p i t a l , and m o d i f y i n g the e m o t i o n a l impact o f h o s p i t a l i z a t i o n f o r themselves.
Acquiring
Information
When a c h r o n i c a l l y
ill
c h i l d i s admitted t o h o s p i t a l ,
dimension i s added to the f a m i l y ' s ongoing i l l n e s s e x p e r i e n c e . that
the p a r e n t s , as a c t i v e p a r t i c i p a n t s
another I t seems
i n the i l l n e s s e x p e r i e n c e ,
require
46 information i n order understanding evident
to o r i e n t themselves t o the s e t t i n g and to g a i n an
of how the h o s p i t a l i z a t i o n i s l i k e l y
It i s
i n the accounts t h a t p a r e n t s know what they r e q u i r e i n terms o f
information that f a c i l i t a t e s tion i s often d i f f i c u l t w i l l be i l l u s t r a t e d The
their ability
t o cope but t h a t t h i s
to o b t a i n i n the b u r e a u c r a t i c s e t t i n g .
informaThese p o i n t s
i n the d i s c u s s i o n o f accounts t h a t f o l l o w s .
parents
clearly articulated
r i g h t i n f o r m a t i o n a t the r i g h t M:
to progress.
the importance of r e c e i v i n g the
time.
And then o f course we had t o pay f o r t h e nurse's f l i g h t out and f i f t y d o l l a r s f o r h e r c a r e . And a l l o f t h i s was a b s o l u t e l y new t o us you know. We j u s t had no i d e a - nobody ever e x p l a i n ed t h i s t o us when he was b e i n g flown out o r a n y t h i n g .
I:
Mm hm
M:
And s i n c e then we have r e a l l y pushed a t home t o have t h i n g s w r i t t e n up i n w r i t t e n form.
M:
I'd l i k e to um, the d o c t o r s e v e r y t h i n g r i g h t away.
M:
I f d o c t o r s and nurses would e x p l a i n v e r y good to p a t i e n t s and t o p a r e n t s t h a t would h e l p a l o t too you know.
F:
You don't know what to do -
M:
When you don't know.
r i g h t t h e r e t e l l i n g me
Many o f the p a r e n t s were a l s o e x p l i c i t about the n a t u r e they r e q u i r e d and e x p l a i n e d
i t i n terms o f b e i n g
honest, and r e l e v a n t t o the i l l n e s s M:
of the i n f o r m a t i o n
complete, s t r a i g h t f o r w a r d ,
experience.
I , myself, would l i k e him t o say, t e l l me the t r u t h and you know, the b a r e s t f a c t s and the goods and bads o f i t .
47 M:
We a r e going t o t a l k t o the d o c t o r s a g a i n about t h a t and they - want t o know e x a c t l y from them what they t h i n k - what they f e e l , you know, and i f they can show me a p i c t u r e from a normal b r a i n and h e r b r a i n .
I:
Mm hm
M:
And j u s t , j u s t l e t me know what they t h i n k , , y o u know. i f i t was t h e i r own baby, what they t h i n k .
F:
You don't want a n y t h i n g hidden from you because you should have a r i g h t to know t h a t I mean.
M:
You have to know.
F:
I t ' s , i t ' s your k i d and a n y t h i n g t h a t ' s going t o a f f e c t him i s gonna a f f e c t you and you s h o u l d know i t .
I t i s apparent
Say
t h a t the k i n d of i n f o r m a t i o n deemed important by the p a r e n t
i s r e l a t e d t o t h e i r p o s i t i o n on the i l l n e s s
trajectory.
p a r e n t s who were e a r l y i n the e x p e r i e n c e searched would h e l p them understand
F o r example, the
f o r information that
the d i a g n o s i s whereas the p a r e n t s who had been
c o p i n g w i t h i l l n e s s f o r many y e a r s r e q u i r e d i n f o r m a t i o n p e r t a i n i n g t o p a r t i c u l a r i l l n e s s problems t h a t were p r o v i n g d i f f i c u l t home.
t o manage i n the
However, r e g a r d l e s s of t h e i r p o s i t i o n on the t r a j e c t o r y , the p a r e n t
d e s i r e d i n f o r m a t i o n t h a t was d i r e c t l y r e l a t e d t o t h e i r p e r s p e c t i v e of the c h i l d ' s i l l n e s s .
This i s i l l u s t r a t e d
i n the f o l l o w i n g account:
M:
Now he [the d o c t o r ] s a i d " I myself and the o t h e r s p e c i a l i s t , both t o g e t h e r , we b e l i e v e t h a t she should have t h i s medicat i o n , j u s t t o see what i t does" he s a i d .
I:
Mm hm
M:
So I s a i d w e l l , and i f i t h e l p s h e r - i f i t h e a l s out t h e toxoplasmosis what i s l e f t : t h e n ? Maybe t h e r e i s j u s t , she i s j u s t a v e g e t a b l e you know - maybe j u s t l i v i n g l i k e a v e g e t a b l e . And she doesn't have toxoplasmosis but she j u s t l i v e s - and he s a i d , "Well I guess s o . "
U n f o r t u n a t e l y , much o f the f r u s t r a t i o n and concern a r i s i n g from encounters w i t h the h e a l t h c a r e bureaucracy
parents'
seem t o f o c u s on t h e i r
48 d i f f i c u l t i e s a c q u i r i n g the i n f o r m a t i o n they need. f r u s t r a t i o n arose when they were unable
The
F o r many of the p a r e n t s
to " c a t c h " the p h y s i c i a n .
M:
We, p a r e n t s , we were t a l k i n g the o t h e r day i n the p a r e n t s ' room t h e r e and we were s a y i n g " I t h i n k the nurses have a c o n s p i r a c y going w i t h the d o c t o r s . " I says when we l e a v e the room they phone the d o c t o r s and say okay, t h e y ' r e gone, you can come up and do i t w i t h o u t mum i n the way.
I:
You must f e e l l i k e t h a t sometimes.
M:
Sometimes i t does, y a . 'Cause i t , you can be gone t e n minutes and a d o c t o r shows up and you've missed him and you've got to w a i t around f o r another two- — t h r e e days b e f o r e you can t r y and t r a c k him down a g a i n .
p a r e n t s spent much o f t h e i r time i n h o s p i t a l w a i t i n g , as i l l u s t r a t e d
i n the p r e v i o u s account. t h a t caused
T h i s appears t y p i c a l o f the b u r e a u c r a t i c i n e r t i a
much o f the p a r e n t s ' d i s s a t i s f a c t i o n d u r i n g the h o s p i t a l i z a t i o n .
Other p a r e n t s were unable
to e l i c i t
i n f o r m a t i o n once they d i d
c o n t a c t the p h y s i c i a n : M:
Because a l l the o t h e r d o c t o r s s a i d t o me when I asked something and they s a i d " W e l l , I'm sure your d o c t o r has e x p l a i n ed i t to y o u . " Or, you know, e s p e c i a l l y because they don't r e a l l y know themselves about i t because they don't have e x p e r i e n c e with i t .
I:
Mm hm
M:
I t h i n k they d i d n ' t want t o say much.
I:
Mm hm
M:
You know, so they would always say " W e l l , I'm sure your d o c t o r has e x p l a i n e d i t to you and you know a l l about i t . " And w e l l , I d i d n ' t want t o say, no, she didn!:t e x p l a i n much t o me - she j u s t s a i d something b u t I d i d n ' t r e a l l y , she d i d n ' t r e a l l y explain i t .
T h i s account
clearly
the bureaucracy willing
i l l u s t r a t e s the d i f f i c u l t i e s p a r e n t s
encounter
when m u l t i p l e c a r e g i v e r s a r e i n v o l v e d and no one i s
t o accept
the r e s p o n s i b i l i t y of i n f o r m i n g the p a r e n t s .
within
49 Making sense o f e x p l a n a t i o n s was p r o b l e m a t i c
f o r parents
when
c o n t r a d i c t o r y i n f o r m a t i o n was r e c e i v e d from d i f f e r e n t i n d i v i d u a l s , a r i s i n g from fragmentary c a r e , o r when the terminology as e x p l i c a t e d i n the f o l l o w i n g
again
was i n a p p r o p r i a t e
accounts:
M:
But I got two d i f f e r e n t s t o r i e s - one t h a t he had h e a r t f a i l u r e , h i s h e a r t q u i t , and one was t h a t he j u s t q u i t breathing. I d i d n ' t know who t o b e l i e v e o r what was going on so I j u s t s a i d no more a n e s t h e t i c and o p e r a t i o n s u n t i l we know what i s going on.
M:
Another t h i n g t h a t ' s hard on us i s t h a t when the d o c t o r does t a l k to us sometimes - i n l o n g m e d i c a l terms - we don't know what they mean. I t i s apparent t h a t the p a r e n t s
t h e i r primary source nurses h a v i n g
of information.
perceived
S e v e r a l o f the mothers mentioned
a r o l e as a "go between" which seems an acknowledgement o f
the h i e r a r c h i c a l s t r u c t u r e o f the b u r e a u c r a c y . M:
the p h y s i c i a n to be
As one mother
explained:
And you can always l e a v e the q u e s t i o n s w i t h the nurses but maybe t h e i r [doctors'3 answer w i l l b r i n g another q u e s t i o n and you l i k e to be p e r s o n t o person t o ask an answer.
Another mother f e l t
t h a t nurses were r e s t r i c t e d i n the i n f o r m a t i o n
c o u l d g i v e b y y t h e i r p o s i t i o n so t h a t they because "they
don't want a n y t h i n g
they
" k i n d o f h o l d a l i t t l e b i t back"
t o come back on them."
I t seems t h a t the t a c t i c s which parents
use t o a c q u i r e
informa-
t i o n i n the f a c e o f f r u s t r a t i o n depend upon t h e i r p o s i t i o n on the t r a j e c t o r y of the f a m i l y ' s e x p e r i e n c e parents
with chronic i l l n e s s .
I n i t i a l l y , some o f the
took the path of l e a s t r e s i s t a n c e and w a i t e d I f o f . - i n f o r m a t i o n t o
come t h e i r way o r u t i l i z e d
another i n d i v i d u a l to a c t as an i n t e r p r e t e r .
I:
Do you stop him and have him e x p l a i n i t a d i f f e r e n t way f o r you?
F:
We j u s t l e t i t go.
50 M:
Oh y a - 'cause some d o c t o r s have walked i n and they be t a l k ing t h e i r b i g fancy t a l k and e v e r y t h i n g and as soon as they walk out of the room I don't know what t h e y ' r e s a y i n g - and yet i f a nurse i s t h e r e they can u s u a l l y e x p l a i n i t - as good as they can, r i g h t , which makes i t a l i t t l e e a s i e r .
•I:
So how do you get the i n f o r m a t i o n you need?
F:
U s u a l l y from my s i s t e r because I guess she can r e l a t e to them more because she's, I guess, she's a l i t t l e h i g h e r educated than we a r e o r whatever.
However, i t seems t h a t the p a r e n t s g e n e r a l l y a r r i v e d a t a p o i n t i n t h e i r e x p e r i e n c e where they began to take a v e r y a c t i v e , d i r e c t r o l e i n a c q u i r ing
information. M:
One p a r t i c i p a n t d e s c r i b e d h e r approach t h i s way:
But I've s a i d
to h e r you can't l e t d o c t o r s f e e l they can
walk a l l over you. You've got to stand up. I f you've got a q u e s t i o n ask i t . I f you don't understand what t h e y ' r e t e l l i n g you, f o r crumb sakes say so. I:
Mm hm
M:
Because I ' l l say, I beg your pardon would you t e l l me t h a t i n my language p l e a s e , i n layman language I c a l l i t and I s a i d then t h e y ' l l s i t down and then t h e y ' l l t u r n around and e x p l a i n i t to me so t h a t i f I have a q u e s t i o n I ' l l ask i t . I f i n d t h a t w i t h our o r t h o p e d i c d o c t o r , he's w e l l known f o r i n and out,- so I've l e a r n e d w i t h him t h a t when he's i n I go stand i n f r o n t o f the door.
Another mother who i n i t i a l l y searched
frantically
f o r someone who would
e x p l a i n the s i t u a t i o n became d i r e c t e d once she understood M:
the system.
And now I know whom to go t o , but a t t f i r s t I d i d n ' t know the d o c t o r s - I d i d n ' t know who was who - and even i f I had seen them once I s t i l l d i d n ' t remember a l l o f them and who s h o u l d know what, so I j u s t asked whoever I grabbed you know, hoping t h a t they would g i v e me an answer o r a t l e a s t they c o u l d , you know, say w e l l j u s t a minute I ' l l c a l l him f o r you. That's not how i t was - they j u s t say w e l l I'm s o r r y I can't say a n y t h i n g about i t . But now uh, I got to know a l l these people and now I f e e l more c o m f o r t a b l e about a s k i n g because i f I know, i f I know the surgeon should know i f I ask him about the shunt t h a t he put i n - he has to know about i t - e v e r y t h i n g I ask.
51 Yet another
approach was
the h o s p i t a l F:
t o s e a r c h f o r sources of i n f o r m a t i o n o u t s i d e
setting:
W e l l I read a l i t t l e b i t i n an a l l e r g y book a t home and was r e a d i n g up on i t .
I
I t seems t h a t a l l p a r e n t s p e r c e i v e the need f o r i n f o r m a t i o n ; however, the t a c t i c s used
to meet the need v a r y from person
to person.
The 'degree of u n p r e d i c t a b i l i t y i n h e r e n t i n the i l l n e s s e x p e r i e n c e
appears
to i n f l u e n c e the r o l e the p a r e n t takes i n a c q u i r i n g i n f o r m a t i o n .
One
mother who
remained v e r y p a s s i v e r e g a r d i n g i n f o r m a t i o n a c q u i s i t i o n e x p l a i n -
ed t h a t no one had any answers r e g a r d i n g her daughter's M:
And knowing t h a t i t might not work - my
illness.
daughter
knows
everytime t h a t they do a n y t h i n g on her t h a t i t i s f o r her b e s t - t h a t t h e y ' r e t r y i n g a l l they can, and she knows t h a t we're a l l w a i t i n g around f o r some m i r a c l e d o c t o r to come a l o n g . Although
a c t i v e l y s e e k i n g i n f o r m a t i o n seems to be the most e f f e c t i v e s t r a t e g y
f o r most p a r e n t s , i t i s o n l y u s e f u l when someone has answers t o the q u e s t i o n s . To summarize, the d a t a r e v e a l t h a t p a r e n t s c o n s i d e r the t i o n of complete, understanding
honest,
acquisi-
s t r a i g h t f o r w a r d i n f o r m a t i o n e s s e n t i a l to t h e i r
of h o s p i t a l i z a t i o n as p a r t of the i l l n e s s e x p e r i e n c e .
the most a s s e r t i v e p a r e n t s who h o s p i t a l bureaucracy
a long-term
seem to have d i f f i c u l t y
p e r c e i v e as n e c e s s a r y . The p a r e n t s who
have had
Even
i n t e r a c t i o n with
the
o b t a i n i n g the i n f o r m a t i o n they
However, these p a r e n t s tend to pursue the
cope p a s s i v e l y appear to have the most
issue.
difficulty
a c q u i r i n g e x p l a n a t i o n s y e t are the most c o n t e n t . The
second
dominant t h r e a d i n the p a r e n t s ' accounts
experience i n h o s p i t a l i s t h e i r a b i l i t y cratic setting.
of the
to e x e r t c o n t r o l w i t h i n the bureau-
I t seems t h a t by c o n t r o l l i n g c e r t a i n a s p e c t s of
e x p e r i e n c e f o r the s i c k c h i l d and
illness
f o r themselves
the
the
p a r e n t s are a b l e
52 to cope more e f f e c t i v e l y w i t h the b u r e a u c r a c y .
C o n t r o l w i l l be d i s c u s s e d
i n r e l a t i o n to managing the e x p e r i e n c e f o r the s i c k c h i l d and
for
themselves.
Managing the C h i l d ' s I l l n e s s E x p e r i e n c e i n H o s p i t a l The
c o n t r o l parents assume r e g a r d i n g the management of
their
c h i l d ' s i l l n e s s e x p e r i e n c e w i t h i n the h o s p i t a l s e t t i n g seems r e l a t e d
to
t h e i r u n d e r s t a n d i n g of the i l l n e s s which i s i n e x t r i c a b l y l i n k e d to the a c q u i s i t i o n of i n f o r m a t i o n d i s c u s s e d i n the p r e v i o u s s e c t i o n . p a r e n t s were concerned
A l l of the
about m e d i a t i n g the i l l n e s s e x p e r i e n c e s f o r t h e i r
children i n hospital. M:
You know, maybe I'm more p r o t e c t i v e than I should be, um, when he's i n the h o s p i t a l , because I do have to make sure t h a t he never has a bad e x p e r i e n c e - because o f the time he does spend i n h o s p i t a l .
T h i s account
i l l u s t r a t e s what seems to be the primary purpose
c o n t r o l l i n g r o l e and Two accounts.
t h a t i s to p r o t e c t the
child.
p a t t e r n s o f " t a k i n g c o n t r o l " were e v i d e n t i n the p a r e n t a l
The
first
i s a v e r y a c t i v e , a s s e r t i v e c o n t r o l l i n g of both
p h y s i c a l and emotional environments ents who
of p a r e n t s '
f o r the c h i l d and appeared-among p a r -
had a l e n g t h y e x p e r i e n c e w i t h t h e i r c h i l d ' s i l l n e s s t h a t
c h a r a c t e r i z e d by a h i g h degree management.
the
was
of p r e d i c t a b i l i t y i n the course of m e d i c a l
I t a l s o seems t h a t complex management regimes
i n the home p r e -
pared these p a r e n t s to a s s e r t c o n t r o l r e g a r d i n g management of c a r e i n h o s p i t a l . The p a r e n t s e x p l a i n e d t h e i r r o l e i n the f o l l o w i n g ways: M:
W e l l I l i k e t o be here j u s t to make sure t h a t he does eat h i s meals, and t h a t t h i n g s are done f o r him. Now I don't know what would happen i f I wasn't here - whether the nurse would be i n and out as o f t e n . There have been days when we haven't seen a nurse a l l day - l i k e y e s t e r d a y was an extremely slow day. We d i d n ' t see anybody, but uh, as I say, I don't complain because I'm t h e r e to do whatever has to be done.
53 M:
When you come down you p r e t t y w e l l have t o cover a l l your bases so t h a t you're n o t going back up t h e r e and then have to come down t h r e e weeks l a t e r to have t h i s o t h e r t h i n g taken c a r e o f .
I:
Mm hm
M:
You've::got t o say okay, now I'm down here I got t h i s , and t h i s done.
M:
I t C t h e h o s p i t a l ] was j u s t l i k e a home e n v i r o n m e n t than a h o s p i t a l 'cause I was r i g h t w i t h the c h i l d r e n and uh, you know, I c o u l d tend to t h e i r needs j u s t l i k e I was a t home.
this
These " a c t i v e c o n t r o l l i n g " p a r e n t s saw t h e i r r o l e as i n i t i a t i n g ,
coordi-
n a t i n g and p r o v i d i n g c a r e as w e l l as emotional support f o r t h e i r
children.
Consequently,
they p e r c e i v e d themselves
as i n t e g r a l members o f the h e a l t h
team and r e f e r r e d t o the team as "we". M:
He's coming to t a l k about what we can do about i t . The
t h e , h e r r e s p i r a t i o n s , and see
f o u n d a t i o n o f t h i s a c t i v e c o n t r o l l i n g stance appears t o
be l o c a t e d i n the p a r e n t s ' b e l i e f t h a t they know t h e i r c h i l d r e n b e s t . They p e r c e i v e themselves
t o be the o n l y h e a l t h team members who
the t o t a l i t y o f t h e c h i l d ' s i l l n e s s M:
M:
understand
experience.
I mean I l i v e w i t h the c h i l d f o r 24 hours of the day and I know the c h i l d and I know what he's capable of d o i n g and what he does and doesn't do when he's s i c k . I mean I've been around him f o r f i v e y e a r s when he's i n and out of h o s p i t a l s a l l the time.
W e l l I'm n o t b r a g g i n g o r a n y t h i n g b u t I know them so w e l l . Her b r e a t h i n g changes the l e a s t l i t t l e b i t maybe another " p e r s o n wouldn't n o t i c e i t b u t I c a n . I know e x a c t l y what's happening... and I mean, I know how my son l i k e s t o be s e t , how he l i k e s to be c o m f o r t a b l e and uh, w e l l d i f f e r e n t l i t t l e things l i k e t h i s . [ T h i s mother had two h o s p i t a l i z e d c h i l d r e n ] Many o f these p a r e n t s ' d i f f i c u l t i e s w i t h the bureaucracy
arose
when t h e i r u n d e r s t a n d i n g of the c h i l d was n o t a p p r e c i a t e d and/or t h e i r judgement was q u e s t i o n e d i n such a way that t h e i r a b i l i t y
to exert c o n t r o l
54 was d i m i n i s h e d . M:
I f e e l , we always f e e l we can do more f o r B r i a n .
I:
I sure b e l i e v e i t - p a r e n t s know t h e i r
M:
That's r i g h t they do, y a - a l o t of people don't t h a t though.
M:
And I s a i d "My son's shunt i s m a l f u n c t i o n i n g , can I have somebody i n to look a t i t ? " - w e l l no, they s a i d i t wasn't - i t was j u s t h i s glands and they fought me over i t and by Sunday he was h a v i n g spasms.
M:
You walk i n here and you t e l l them the answers t o a l l the q u e s t i o n s they ask. They put i t on the c h a r t b u t nobody reads the c h a r t .
I:
Mm hm
M:
I says I've t o l d them t h r e e times don't g i v e him homog e n i z e d m i l k , i t makes him too phlegmy, um, b u t i t ' s s t i l l coming up on h i s t r a y .
children.
D e s p i t e the c o n s t r a i n t s of the system, these p a r e n t s t a i n t h e i r p a t t e r n o f a c t i v e c o n t r o l through M:
realize
seemed a b l e t o main-
a s t r o n g sense o f s e l f worth.
And she says, t h a t ' s n o t r i g h t . And I says, aah, f i n a l l y somebody who b e l i e v e s me. I says, I'm n o t a n e u r o t i c mother - I says, when something's wrong I know i t ' s wrong. The
second p a t t e r n e v i d e n t i n the p a r e n t s ' accounts
"passive c o n t r o l . " i l l n e s s experience
Here the p a r e n t s
focused on m e d i a t i n g
i n h o s p i t a l by p r o v i d i n g emotional
i s one o f
their
support.
child's I t seems
t h a t by c o n t r o l l i n g t h e i r own a f f e c t , so as t o p r e s e n t an o p t i m i s t i c l o o k t o the c h i l d , the p a r e n t s inner resources.
felt
out-
they were s t r e n g t h e n i n g the c h i l d ' s
Some o f the e x p l a n a t i o n s a r e as f o l l o w s :
F:
He needs a c o n s t a n t , a c o n s t a n t s t r i v i n g I guess, you know.
support
t o keep him
M:
Ya, oh ya - she has t o be, a t a l l times she has t o be kept cheery and she can't be t i r e d out and e v e r y t h i n g .
55 F:
L i k e I t h i n k they can p i c k up on your v i b e s . I f you're down about t h e i r b e i n g i n t h e i r p o s i t i o n I t h i n k they can p i c k t h a t up so you have to come here a l l the time and be happy f o r him, even whether you're n o t , even i f you f e e l i t or n o t .
T h i s s t r a t e g y i s termed " p a s s i v e c o n t r o l " i n t h a t the p a r e n t s were a b l e to c o n t r o l a c e r t a i n aspect of t h e i r c h i l d ' s i l l n e s s e x p e r i e n c e but d i d not appear to be " d o i n g " a n y t h i n g . e v i d e n t among p a r e n t s who
The p a s s i v e p a t t e r n of c o n t r o l
seemed to l a c k knowledge which would
a more a c t i v e r o l e i n terms of d e a l i n g w i t h the b u r e a u c r a c y . are apparent,
u n p r e d i c t a b l e from the m e d i c a l p e r s p e c t i v e f e l t
terms of the " o u t s i d e " w o r l d .
Her
accounts
factors Again,
s t r o n g l y about her
and
role
passive i n
r e f l e c t e d her l a c k of
i n making d e c i s i o n s r e l a t e d to managing c a r e .
M:
W e l l , she had the h e a r t d o c t o r come i n and check her and she had her r a d i o l o g i s t come i n and then she had her b l o o d d o c t o r come i n and now t h e y ' r e a l l going to pow-wow and d e c i d e whether to send us home and not do a n y t h i n g o r whether um, - send us home and not do a n y t h i n g and w a i t ' t i l she gets s i c k and then do something - which i s t a k i n g a b i g r i s k 'cause i f they w a i t ' ; t i l she gets s i c k t h a t means t h e y ' r e going to take a r i s k j u s t doing a n y t h i n g on h e r .
I:
Mm
M:
Or do something and hope t h a t i t doesn't make her s i c k . Because l a s t time they d i d something on her, her k i d n e y s failed. So uh, I don't know what t h e y ' r e going to d e c i d e . So r e a l l y I am j u s t p l a y i n g a w a i t i n g game... I always go a l o n g w i t h what they say. I don't t h i n k I've got a c h o i c e .
:;
hm
In a d d i t i o n , the p a s s i v e p a t t e r n of c o n t r o l was two
Two
l a r g e l y unexplainable
i n c o n t r o l l i n g the c h i l d ' s e m o t i o n a l environment but appeared
involvement
support
the f i r s t b e i n g the n a t u r e of the c h i l d ' s i l l n e s s .
the mother whose c h i l d had an i l l n e s s t h a t was
was
u t i l i z e d by p a r e n t s i n
f a m i l i e s w i t h i l l n e s s e x p e r i e n c e s of s h o r t d u r a t i o n .
Thus, the
f a c t o r seems to be l a c k of knowledge as a r e s u l t of l i m i t e d
second
experience.
56 with i l l n e s s .
Both s e t s o f p a r e n t s e x h i b i t e d a change i n t h e i r p a t t e r n
of c o n t r o l from predominantly p a s s i v e t o predominantly h o s p i t a l i z a t i o n of t h e i r c h i l d r e n p r o g r e s s e d . p a r e n t s encounter
a c t i v e as the
I t would seem t h a t some
a t u r n i n g p o i n t i n how they p e r c e i v e and subsequently
d e a l w i t h a s p e c t s of the h o s p i t a l bureaucracy t r a j e c t o r y of the i l l n e s s e x p e r i e n c e .
as they move a l o n g the
The p a r e n t s e x p l a i n e d i t t h i s " way:
M:
And I've l e a r n e d now that you r e a l l y have to f i g h t i f you want something. Because, I mean, I r e a l i z e t h e r e a r e c i r c u m s t a n c e s where they don't - but I c o u l d n ' t stand t o see him i n t h a t much p a i n anymore.
M:
But up ' t i l then I guess everyone j u s t f e e l s , everyone j u s t walked i n and d i d what they wanted. And I d i d n ' t r e a l l y n o t i c e i t up u n t i l then you know. But then t h a t one day I n o t i c e d i t - and i t was j u s t almost the l a s t day when I was i n t h e r e now, b u t I thought she w i l l p r o b a b l y have to come i n t o h o s p i t a l q u i t e o f t e n , more o f t e n . T h i s won't be the l a s t time and i f - then I t h i n k i t ' s enough now. She has been here so o f t e n now, I t h i n k from now on I'm j u s t not going to a l l o w i t anymore, t h a t student d o c t o r s , you know, come i n t h e r e a l l t h e time and examine h e r a l l the time.
F:
W e l l I t h i n k we're t r y i n g t o a v o i d a n y t h i n g t h a t i s n ' t r e a l l y n e c e s s a r y -. t h i n g s t h a t , I guess i t bugs him a b i t you know, to be poked around and t h a t k i n d of s t u f f and i f i t i s n ' t r e a l l y n e c e s s a r y I don't see — you know i n the b e g i n n i n g we d i d n ' t mind 'cause they can l e a r n from i t , eh? So we can a p p r e c i a t e the f a c t that they need, they need somebody t o be a guinea p i g o r whatever t o o b u t I mean i t comes t o , a f t e r a f t e r so much o f i t , i t ' s j u s t w e l l go f i n d somebody e l s e t o poke around now.
Thus i t seems t h a t once the i m p l i c a t i o n s o f c h r o n i c i t y become c l e a r t h e p a r e n t s tend to take a more a c t i v e advocacy a l l o f the p a r e n t s used
role.
I t was e v i d e n t t h a t
t a c t i c s that served to modify both the p h y s i c a l
and e m o t i o n a l environment
f o r t h e c h i l d ; however, t h e p a r e n t s appear t o
r e l y on a dominant s t r a t e g y which i n f l u e n c e s t h e i r p a t t e r n o f c o n t r o l .
57 Two a s p e c t s o f the c h i l d r e n ' s i l l n e s s e x p e r i e n c e i n h o s p i t a l were o f p a r t i c u l a r concern t o the p a r e n t s ;
the c h i l d ' s e x p e r i e n c e w i t h
p a i n and d i s r u p t i o n of the c h i l d ' s normal r o u t i n e .
The p a r e n t s ' p r o t e c -
t i v e r o l e seemed e s p e c i a l l y t h r e a t e n e d when t h e i r c h i l d was i n p a i n which r e s u l t e d i n a g r e a t d e a l o f e m o t i o n a l t u r m o i l as w e l l as s t r o n g attempts to c o n t r o l the s i t u a t i o n .
One mother expressed h e r p o s i t i o n t h i s way:
M:
As l o n g as they don't touch h e r and don't uh, and don't make her c r y you know, and makerher have p a i n and s t u f f , w e l l I don't mind i f they come and ask q u e s t i o n s . I don't mind t h a t - or look a t her.
I:
Mm hm - so t h a t p a r t o f what you do here i s make i t easy, as easy f o r h e r as you can.
M:
That's r i g h t - I t r y .
Another mother e x p l a i n e d : M:
So i t was Thursday n i g h t - midnight by the time they operated. They had him scheduled f o r F r i d a y and f i n a l l y I c a l l e d the Head Nurse down. Even w i t h h i s m e d i c a t i o n s a f t e r they put him back on i t - I c a l l e d h e r down and I s a i d l o o k at him, I says he's a b s o l u t e l y b l u e , he's i n p a i n and he's suffering. I says, l o o k . i t , he's j u s t j e r k i n g , he's j u s t uh - I t e l l you t h a t ' s not a time I'd l i k e t o go through a g a i n .
S e v e r a l p a r e n t s a l s o r e l a t e d the d i f f i c u l t i e s
they encountered
to
a t t a i n o r m a i n t a i n some sense of normalacy
i n their child's l i f e
in
hospital. M:
i n trying while
And h i s normal bedtime, as they asked me, i s between seven t h i r t y and e i g h t o ' c l o c k . And I thought f o r sure last..night he'd c r a t e r about s i x - and he was k i n d o f d o z i n g and o f course then they come i n and change h i s bandage and wake him up a g a i n and then they'd come i n and take h i s temperature and then they'd g i v e him h i s m e d i c i n e . They're doing a l l t h i s a f t e r the time when he should have been a s l e e p . - so i t was e l e v e n o ' c l o c k I guess by the time he f i n a l l y s e t t l e d down l a s t n i g h t .
58 M:
L i k e the Pablum - when they were f e e d i n g him Pablum and then a l l o f a sudden he didn':t want i t , t h a t ' s l i k e I t o l d the d o c t o r , w e l l would you eat steak f o u r times a day? You know, I says i t ' s r i d i c u l o u s , you've g o t t a , you've g o t t a s t a r t f e e d i n g him f r u i t s o r something - something a d i f f e r e n t f l a v o r so he can you know, have a d i f f e r e n t t a s t e .
I t stands t o r e a s o n t h a t when h o s p i t a l i z a t i o n i s a f r e q u e n t l y aspect
recurring
o f a long-term i l l n e s s e x p e r i e n c e , p a r e n t s attempt to reduce i t s
d i s r u p t i n g i n f l u e n c e on the c h i l d by m a i n t a i n i n g routine.
The u n d e r l y i n g
some s o r t o f a normal
concern seems to be maintenance and promotion
of the c h i l d ' s normal growth and development which o f t e n appears t o be ignored
by h e a l t h p r o f e s s i o n a l s w i t h i n the b u r e a u c r a t i c
setting.
F i n a l l y , the d a t a r e v e a l that not a l l o f the p a r t i c i p a n t s wished to e x e r t
c o n t r o l a l l o f the time.
some p a r e n t s t o t e m p o r a r i l y
I n f a c t , i t seemed t o be a r e l i e f f o r
r e l i n q u i s h c o n t r o l and have h e a l t h
professionals
assume the r e s p o n s i b i l i t y of:.caring f o r the s i c k c h i l d . M:
But then a t times you know - we've taken him i n t o h o s p i t a l - I've been so upset a t home t h a t I'm going t o the h o s p i t a l once I got to the h o s p i t a l I seem t o j u s t s o r t o f . . .
F:
r e l a x cause you know people a r e around you...
M:
that can take him and look a f t e r him - where I don't know what I'm d o i n g . But i t j u s t s o r t o f , I j u s t s o r t of l e t i t a l l out and then I s t a r t c r y i n g because I f e e l so good. In summary, the d a t a show t h a t p a r e n t s a r e v e r y
concerned
about the impact o f h o s p i t a l i z a t i o n on t h e i r c h i l d ' s i l l n e s s and
experience
attempt t o mediate the impact by c o n t r o l l i n g c e r t a i n a s p e c t s of the
experience.
Parents'
c o n t r o l l i n g b e h a v i o u r appears to serve
of p r o t e c t i n g the c h i l d and n o r m a l i z i n g "make as normal as p o s s i b l e g i v e n
the purposes
the e x p e r i e n c e which means t o
the c o n s t r a i n t s o f the i l l n e s s and the
59 setting."
Two p a t t e r n s o f c o n t r o l a r e e v i d e n t :
the f i r s t
involves a
focus on a c t i v e p a r t i c i p a t i o n i n managing the c h i l d ' s c a r e w h i l e the second
i n v o l v e s a f o c u s on p r o v i d i n g emotional support
c h i l d ' s inner resources. modify of
to s t r e n g t h e n the
The p a r e n t s ' p e r c e i v e d a b i l i t y
to p o s i t i v e l y
the c h i l d ' s e x p e r i e n c e i n h o s p i t a l seems t o r e i n f o r c e t h e i r
s e l f worth d e s p i t e evidence
that t h e i r understanding
sense
o f the c h i l d
is •
o f t e n n o t v a l u e d w i t h i n the b u r e a u c r a t i c system. As p r e v i o u s l y s t a t e d , the second to
f a c e t " o f the theme r e l a t e d
c o n t r o l i s how p a r e n t s cope w i t h the p e r s o n a l impact
of t h e i r
child's
h o s p i t a l i z a t i o n which w i l l be p r e s e n t e d i n the f o l l o w i n g s e c t i o n .
M o d i f y i n g the Emotional
Impact o f H o s p i t a l i z a t i o n f o r S e l f
H o s p i t a l i z a t i o n o f a c h r o n i c a l l y i l l c h i l d appears a s i g n i f i c a n t emotional
impact
to c a r r y
f o r the p a r e n t s i n t h a t many o f the f e a r s ,
u n c e r t a i n t i e s and f r u s t r a t i o n s t h a t a r e u s u a l l y d i l u t e d w i t h i n the home s e t t i n g a r e brought M:
i n t o acute focus w i t h i n the h o s p i t a l
setting.
Everybody w o r r i e s about your c h i l d you know, so you uh, worry a l l the time t o o . You s i t down and you s i t t h e r e and even i f you do something, needle work o r whatever, you t h i n k about i t a l l the time. Where here a t home you t a l k o t h e r t h i n g s . People phone you and you t a l k about o t h e r s t u f f , o r neighbours v i s i t you and you t a l k about t h i n g s - and you see o t h e r t h i n g s so don't always c o n c e n t r a t e on t h a t . Where over t h e r e a l l the time you c o n c e n t r a t e about - o r over t h e r e i f someone, another mother comes t o v i s i t you, what a r e you t a l k i n g about? You're:: t a l k i n g about h e r s i c k c h i l d and your s i c k c h i l d . The p a r e n t s d e s c r i b e d many t a c t i c s f o r c o n t r o l l i n g t h e i r emo-
t i o n a l o v e r l o a d y e t a l l were r e l a t e d t o p e r s o n a l l y d e r i v e d s t r a t e g i e s . In
o t h e r words, the bureaucracy
w i t h the emotional d i f f i c u l t i e s ization,.
appears
to o f f e r p a r e n t s l i t t l e a s s i s t a n c e
t h a t a r i s e d u r i n g t h e i r child's- h o s p i t a l -
60 The
dominant s t r a t e g y used by t h e p a r t i c i p a n t s o f t h i s study seem to be
s e l e c t i v e i n a t t e n t i o n which allowed s p e c i f i c concerns t o be put a s i d e f o r a p e r i o d o f time i n o r d e r f a c i l i t a t e coping.
to l i g h t e n the e m o t i o n a l l o a d and thus
T h i s s t r a t e g y d i d n o t a l t e r awareness o f a d i f f i c u l t y ;
i n s t e a d the p a r e n t s s t a t e d t h a t they simply concern.
chose n o t to a t t e n d
The f o l l o w i n g accounts i l l u s t r a t e t h i s
to the
point:
M:
I says any c o m p l i c a t i o n c o u l d take p l a c e under any o f h i s anesthetics. A n y t h i n g c o u l d happen - j u s t l i v e day to day and go t h a t way. I don't know, I'm j u s t happy the way t h i n g s are g o i n g .
I:
Uh huh - i t sounds l i k e the "anything c o u l d happen" p a r t i s n ' t a p a r t t h a t you r e a l l y l i v e w i t h .
M:
I ignore
M:
I t makes i t e a s i e r on me i f I can f o r g e t c o m p l e t e l y a l l of my motherly r e s p o n s i b i l i t i e s except to J a n i c e .
I:
Hm hm
M:
I have t o , 'cause i f I come down here, I j u s t come down then everyday I'd be making a phone c a l l home to make sure the k i d s a r e okay, and I'd be t a l k i n g t o them and I'd be u p s e t t i n g myself twice as much.
i t - a g a i n my o s t r i c h coming out i n me.
Some p a r e n t s found i t n e c e s s a r y t o take a "time o u t " i n o r d e r with t h e i r c h i l d ' s h o s p i t a l i z a t i o n .
to cope
By p h y s i c a l l y removing themselves
from the h o s p i t a l s e t t i n g , p a r e n t s c o u l d put a s i d e many o f the a s s o c i a t e d concerns and g i v e
themselves the o p p o r t u n i t y
as day-to-day t a s k s
that required a t t e n t i o n .
to r e f o c u s
on such
things
One f a t h e r d e s c r i b e d i t
t h i s way: F:
I t h i n k i t ' s more not when he needs v i s i t s b u t when we need n o t t o be here, you know.
I:
Uh huh - I guess I was wondering about that "needing n o t to be h e r e " - i s that j u s t an, an escape from the whole t h i n g f o r a s h o r t p e r i o d of time?
F:
Ya, e x a c t l y , t h a t ' s e x a c t l y what i t i s - i s n o t h a v i n g t o be h e r e .
61 L i k e a l l o f t h e c o p i n g s t r a t e g i e s t h a t w i l l be d i s c u s s e d , s e l e c t i v e i n a t t e n t i o n to problems does not seem t o be a unique
response
to h o s p i t a l -
i z a t i o n but a g e n e r a l s t r a t e g y t h a t was m o d i f i e d t o d e a l w i t h t h e s p e c i f i c s of the s i t u a t i o n . A second
s t r a t e g y i n v o l v e d " a n t i c i p a t i n g the worst"
and appeared
to occur i n t h e l i g h t o f e x p e r i e n c e w i t h p r e v i o u s i n c i d e n t s t h a t were n e g a t i v e as w e l l as unexpected. themselves
Some p a r e n t s f e l t
f o r what they f e a r e d might happen, they were p r o t e c t i n g them-
s e l v e s from unexpected, n e g a t i v e emotional j o l t s . it
t h a t by p r e p a r i n g
Some p a r e n t s e x p l a i n e d
i n the f o l l o w i n g ways:
This
M:
And I says, a c t u a l l y any s u r g e r y they have ever t r i e d has never worked the f i r s t time - so I'm q u i t e prepared t h a t t h i s i s going to be a number two and t h r e e o p e r a t i o n type t h i n g to g e t f i x e d .
M:
But now t h a t she has had these c o m p l i c a t i o n s , so I'm prepared f o r more.
F:
You j u s t keep t e l l i n ' y o u r s e l f what's going t o happen so t h a t when i t does happen i t doesn't r e a l l y a f f e c t you i n a dramatic way I guess.
s t r a t e g y appeared
to have two p o s i t i v e e f f e c t s :
reduction of anxiety
as t h e s i t u a t i o n seemed l e s s u n p r e d i c t a b l e and more e f f e c t i v e if
coping
the p a r e n t s ' f e a r s were r e a l i z e d . M i r r o r i n g was a s t r a t e g y common t o a l l the p a r t i c i p a n t s .
Here
the p a r e n t s used o t h e r p a r e n t s w i t h s i c k c h i l d r e n as m i r r o r s a g a i n s t which t h e i r own s i t u a t i o n c o u l d be r e f l e c t e d and e v a l u a t e d .
I n v a r i a b l y the
p a r e n t s found something to support a p o s i t i v e o u t l o o k w i t h r e g a r d t o t h e i r experience. M:
I t h i n k t h a t ' s what gave J a n i c e h e r s t r e n g t h and what gave me mine was b e i n g on oncology because they a r e a l l f i g h t i n g f o r one t h i n g
62 and t h a t ' s to s t a y a l i v e . not make i t .
I mean they a l l know t h a t they might
M:
They a l l know t h a t most l i k e l y they won't make i t , b u t t h e y ' r e a l l t h e r e f i g h t i n g f o r i t and t h a t ' s - i f they can keep f i g h t i n g and go through the h e l l they go through so can e v e r y body e l s e .
M:
But you look around and you see so many o t h e r k i d s t h a t a r e worse o f f and you're a c t u a l l y t h a n k f u l .
F:
I t ' s sad b u t i t ' s e n l i g h t e n i n g f o r me.
Hospitalization
appears
t o have some p o s i t i v e
effects
f o r parents i n
r e d u c i n g t h e i r sense o f i s o l a t i o n and a l l o w i n g them t o r e - e v a l u a t e t h e i r d i f f i c u l t i e s i n r e l a t i o n to those o f o t h e r p a r e n t s . need to t a l k about
t h e i r e x p e r i e n c e and the t a l k i n g
I t seems t h a t p a r e n t s t h a t o c c u r r e d between
p a r e n t s i n c o n j u n c t i o n w i t h the m i r r o r i n g p r o c e s s was c i t e d as p a r t i c u l a r l y supportive. M:
One mother d e s c r i b e d i t t h i s way:
L i k e you a u t o m a t i c a l l y come t o g e t h e r and t a l k about, everyone t a l k s about t h e i r problem you know. A t f i r s t I was n o t - I d i d n ' t ask anybody what problem they had - what k i d s , what t h e i r k i d s had and s t u f f but people came and asked me a l l the time - and you know I found out i t h e l p e d me a c t u a l l y , you know, t o t a l k about i t .
The bond between p a r e n t s i s one o f common u n d e r s t a n d i n g a r i s i n g
from
a shared e x p e r i e n c e : M:
You get more support from the p a r e n t s t h a t have got s i c k k i d s than you do from even f a m i l y members t h a t don't know what's going on.
S e v e r a l p a r e n t s remarked t h a t t a l k i n g w i t h f a m i l y and f r i e n d s was d i f f i c u l t as they l a c k e d a f i r s t - h a n d
a p p r e c i a t i o n of the e x p e r i e n c e .
p a r e n t s r e a l l y d i d n o t want t h e i r f r i e n d s " t o know a l l about problems and s t u f f . "
The p a r e n t s s e l e c t i v e l y u t i l i z e d
as d e s c r i b e d by one mother:
As w e l l , some [theirj
their resources,
63 M:
I don't,^sometimes I f e e l t h a t I don't r e a l l y want to t a l k about i t too much, uh, when you're out w i t h your f r i e n d s because i t s p o i l s your - i t makes you unhappy, you know.
I:
Mm hm
M:
And i f you go out you want to be happy, and so i f you a r e i n h o s p i t a l and can t a l k t o o t h e r people more, then you don't r e a l l y have t o , to t a l k t o o t h e r - a t home anymore about t h i s , you know.
Not o n l y was i t h e l p f u l
f o r the p a r e n t s to t a l k about
t h e i r own
concerns
but many found t h a t , by v i r t u e o f t h e i r l o n g s t a n d i n g e x p e r i e n c e i n h o s p i t a l , they c o u l d be a r e s o u r c e t o o t h e r p a r e n t s . F:.
And a l o t o f people t h a t have come here, they want somebody to t a l k to b u t they don't j u s t want to t a l k to anybody, you know. They can't j u s t walk up and s t a r t t a l k i n g t o anybody - b u t when you're t h e r e w i t h somebody t h a t h a s , you know, i s w i t h t h e i r k i d and you have your k i d o r whatever, you can j u s t f i n d t h i n g s to t a l k about. I t j u s t comes out and then you can f i n d t h a t people'11 open themselves up a l i t t l e more - and they want to g e t i t o u t . You know they want t o get i t out b u t they don't have a source - you know, i f you can be t h a t s o u r c e , which you know, b e i n ' s t r e n g t h f o r somebody e l s e can do something f o r you too, you know. F i n a l l y , many p a r e n t s r e l i e d on hope to d e a l w i t h the u n c e r t a i n -
t i e s of t h e i r s i t u a t i o n .
Typically
t i o n , both m e d i c a l and e x p e r i e n t i a l , illness. ficult M:
the p a r e n t s gathered a l o t o f i n f o r m a to gain i n s i g h t
into
their
child's
O f t e n the evidence from d i f f e r e n t sources was d i s c r e p a n t and d i f -
to a c c e p t so the p a r e n t s tended
t o respond by taking a h o p e f u l s t a n c e .
She knows every time t h a t they do a n y t h i n g on h e r t h a t i t i s f o r h e r b e s t - t h a t t h e y ' r e t r y i n g a l l they can - and she knows t h a t we're a l l w a i t i n g around f o r some m i r a c l e d o c t o r to come along.
F:
W e l l t h a t ' s , when you have a s i c k k i d I t h i n k t h a t ' s b a s i c a l l y a l l you got to r e a l l y hang onto i s hope, you know. And, uh, you want to get a l o t o f t h a t from the d o c t o r . You want them to say t h i n g s t h a t a r e going to g i v e you that hope you know. I t doesn't happen - so what they say you've got t o i n t e r p r e t i n t o something that's hopeful.
64 To
summarize, p a r e n t s of c h r o n i c a l l y
f u l i n the s t r a t e g i e s
ill
c h i l d r e n are resource-
they use t o manage the emotional impact of t h e i r
c h i l d ' s h o s p i t a l i z a t i o n , thus e n a b l i n g them t o remain s t r o n g and e f f e c t i v e i n t h e i r r o l e as m e d i a t o r o f t h e i r c h i l d ' s i l l n e s s e x p e r i e n c e the b u r e a u c r a c y .
within
A s s o c i a t e d w i t h the p a r e n t s ' p o s i t i o n a t the i n t e r f a c e
between the h o s p i t a l b u r e a u c r a c y and t h e i r s i c k c h i l d a r e the r e l a t i o n s h i p s among the people i n v o l v e d .
The f o l l o w i n g
section w i l l
discuss
two
themes which appeared s i g n i f i c a n t i n the p a r e n t a l a c c o u n t s .
the
relationship
parent and h e a l t h
They a r e :
between parent and s i c k c h i l d and the r e l a t i o n s h i p
between
professional.
R e l a t i o n s h i p s i n the H o s p i t a l
Setting
I t i s e v i d e n t from the p a r e n t a l accounts t h a t
their relation-
s h i p s i n the h o s p i t a l s e t t i n g g i v e meaning to the i l l n e s s e x p e r i e n c e which i n turn
d i r e c t s t h e i r behaviour.
relationship
The
appears to be between the parent and the s i c k c h i l d .
Relationship The
chronically
Between Parent and S i c k
d a t a show t h a t
Child
the r e l a t i o n s h i p between p a r e n t s and t h e i r
s i c k c h i l d i s a l t e r e d when the c h i l d i s admitted t o h o s p i t a l .
Most of the p a r e n t s e x p l a i n e d t h a t s h i f t e d which r e s u l t e d attention.
Not s u r p r i s i n g l y , the most i n f l u e n t i a l
i n the i l l
d u r i n g h o s p i t a l i z a t i o n , p r i o r i t i e s were c h i l d becoming the primary f o c u s o f
F o r these p a r e n t s , an i n t e n s i f i c a t i o n o f the r e l a t i o n s h i p
t h e i r s i c k c h i l d seemed to o c c u r .
with
Two mothers d e s c r i b e d i t t h i s way:
M:
I've l e a r n e d from that e x p e r i e n c e t h a t I cannot have the r e s t of my f a m i l y around me when he's here because I devote 100% to him - but I can't s p l i t . I t ' s j u s t too h a r d - i t t e a r s you a p a r t .
M:
But um, I don't know - I guess I'm j u s t too much i n v o l v e d w i t h t h i s one .[child i n h o s p i t a l ] so I don't r e a l l y miss the o t h e r one that much.
65 Whereas another s e t of p a r e n t s who had e x p e r i e n c e d r e p e a t e d h o s p i t a l i z a t i o n s , o f l e n g t h y d u r a t i o n , i n a r e l a t i v e l y s h o r t time span were concerned about d i m i n i s h e d i n t e n s i t y and expressed i t i n t h i s manner: M:
But i t ' s j u s t s t r a n g e because he's got a mother and a f a t h e r p a r t - t i m e and we've got a son p a r t - t i m e .
However, r e g a r d l e s s o f t h e i r p e r s p e c t i v e w i t h r e g a r d to i n t e n s i t y , the parents a r t i c u l a t e d
that p r i o r i t i e s
around the h o s p i t a l i z e d child
child.
i n day-to-day l i v i n g were r e a r r a n g e d
The same f a m i l y s a i d
t h i s about h a v i n g a
i n hospital: F:
You have to r e v o l v e your l i f e k i d s as p a r t o f your l i f e .
around him i n s t e a d o f h a v i n g your
While another mother e x p l a i n e d : M:
You know, j u s t came home and I u s u a l l y had supper a l r e a d y i n the h o s p i t a l so I j u s t came home and uh, s a t down here f o r a l i t t l e w h i l e and t a l k e d . And then we went t o bed and i n the morning get up e a r l y and drank t e a and o f f we went a g a i n , b o t h - a l l of u s . I t was j u s t l i k e a h o t e l here I guess coming f o r o v e r n i g h t i n your house. S e v e r a l p a r e n t s found t h a t h o s p i t a l i z a t i o n p r o v i d e d them w i t h
a s p e c i a l o p p o r t u n i t y to be w i t h t h e i r s i c k c h i l d and to share the i l l ness e x p e r i e n c e i n a p a r t i c u l a r l y m e a n i n g f u l way: M:
We've had l o t s o f times where we're j u s t s i t t i n g here but t h a t t h i s i s mine and J a n i c e ' s - um, how would you say i t mine and J a n i c e ' s w o r l d t o g e t h e r . A t home I haven't got t h a t much time t o spend w i t h her because the o t h e r k i d s a r e t h e r e - and I know she might not be around f o r e v e r and t h i s i s mine and h e r s s p e c i a l time - a t l e a s t mine. I get t o spend as much time w i t h her as I can even i f i t has t o be i n h o s p i t a l a t l e a s t we've got i t t o g e t h e r .
I:
I t sounds l i k e your r e l a t i o n s h i p i s one o f you e x p e r i e n c i n g h i s e x p e r i e n c e s as much as you p o s s i b l y c a n .
M:
Ya, I l i k e t o do t h a t - I don't l i k e him to have t o go through a l l t h i s alone.
66 I t seemed v e r y important
f o r the p a r e n t s to see themselves
as dependable
f o r t h e i r s i c k c h i l d - t h a t not o n l y would they be p r e s e n t when the c h i l d needed them but they would cope e f f e c t i v e l y . M:
That's why I l i k e b e i n g around a l l the time - i n case something happens or a n y t h i n g , then I am t h e r e and he's got c o n f i d e n c e i n me, you know. 'Cause he knows t h a t Mum w i l l be t h e r e i f he's, i f she i s needed.
I:
I'm always amazed a t how s t r o n g you a r e .
M:
You have to - you have t o . I f I l e t every, i f I l e t a l l my f e e l i n g s come s t r a i g h t out I'd be no good to J a n i c e a t a l l t h e r e wouldn't be any sense i n me b e i n g h e r e .
I t appears
w e l l p a r e n t s cope and um,
t h a t p a r e n t s understand
they h o l d a unique
of t h e i r c h i l d ' s e x p e r i e n c e w i t h i l l n e s s and very s e r i o u s l y .
how
p e r s p e c t i v e i n terms
so take t h e i r
responsibilities
U s u a l l y one p a r e n t assumed the r o l e of m e d i a t i n g
c h i l d ' s e x p e r i e n c e i n h o s p i t a l which i n t e n s i f i e d f e e l i n g s of as w e l l as p e r c e p t i o n s of a s t r o n g bond w i t h the s i c k M:
the
responsibility
child.
But w h i l e I'm here t i n h o s p i t a l ] I f e e l I .have the respons i b i l i t y of the c h i l d r e n and uh, I've seen t h a t I'm the o n l y one of t h e f a m i l y here - w e l l , then I f e e l t h a t t h a t ' s my responsibility. I t i s c l e a r t h a t the p a r e n t s ' r e l a t i o n s h i p w i t h t h e i r
sick child
chronically
i s something they g e n e r a l l y f e e l v e r y p o s i t i v e about and
t h e i r sense of the r e l a t i o n s h i p guides b e h a v i o u r The d a t a r e v e a l t h a t the p a r e n t s see themselves
i n the h o s p i t a l
that
setting.
as a v e r y s p e c i a l r e -
s o u r c e f o r t h e i r s i c k c h i l d r e n d u r i n g the p e r i o d s of h o s p i t a l i z a t i o n are w i l l i n g
to s i g n i f i c a n t l y a l t e r day-to-day p a t t e r n s of l i v i n g i n o r d e r
to meet t h e i r c h i l d r e n ' s needs. between p a r e n t s and response
and
I t i s a l s o apparent
a chronically sick child
t o the demands of the i l l n e s s
t h a t the
develops and
experience.
relationship
changes i n
67 The accounts
final
theme to be d i s c u s s e d i n r e l a t i o n to the p a r e n t s '
i s t h e i r r e l a t i o n s h i p w i t h h e a l t h care p r o f e s s i o n a l s .
The P a r e n t s ' R e l a t i o n s h i p s w i t h H e a l t h Care P r o f e s s i o n a l s Parents of c h r o n i c a l l y i l l
c h i l d r e n i n t e r a c t w i t h and
depend
upon a l a r g e number of h e a l t h p r o f e s s i o n a l s over the course of t h e i r
child's
illness.
child's
At no p o i n t i s t h i s more apparent
than d u r i n g times of the
h o s p i t a l i z a t i o n when some measure of c o n t r o l i s r e l i n q u i s h e d by the p a r e n t s to h e a l t h p r o f e s s i o n a l s who
then assume r e s p o n s i b i l i t y f o r managing some
a s p e c t s of the c h i l d ' s i l l n e s s .
I t i s c l e a r from the emphasis p l a c e d on
r e l a t i o n s h i p s w i t h h e a l t h p r o f e s s i o n a l s i n the p a r t i c i p a n t s ' accounts t h i s theme, a l o n g w i t h the f o u r p r e v i o u s l y d i s c u s s e d , make a
that
significant
c o n t r i b u t i o n to the meaning p a r e n t s g i v e to the i l l n e s s e x p e r i e n c e i n hospital. The are founded
d a t a show t h a t p a r e n t s ' r e l a t i o n s h i p s w i t h h e a l t h p r o f e s s i o n a l s
on a g r e a t d e a l of u n d e r s t a n d i n g
and
i n s i g h t r e g a r d i n g the
d i s c r e p a n c i e s t h a t e x i s t between t h e i r frame of r e f e r e n c e and medical world.
t h a t of the
S e v e r a l p a r e n t s a r t i c u l a t e d an awareness t h a t t h e i r
per-
spective often differed
from the m e d i c a l p e r s p e c t i v e , as i l l u s t r a t e d i n
the f o l l o w i n g account.
The mother's view was
c h i l d w h i l e the m e d i c a l view was e x i s t e n c e of M:
Now,
based
based
on e x p e r i e n c e w i t h
on l a c k of evidence
to support
the the
pathophysiology. I must say d o c t o r s a r e q u i c k to say " I t ' s temper" and
I
says t h a t I am w e l l aware of the d i f f e r e n c e . b e t w e e n temper and this. I know t h a t i f i t was a temper tantrum t h a t i f he turned b l u e and passed out he would a u t o m a t i c a l l y b e g i n to b r e a t h e a g a i n . But I says, t h i s guy doesn't, he does not do t h a t - he i s j u s t a d i s h r a g i n my arms. I says I have to go and a t f i r s t c o l d water would b r i n g him out because i t would be a shock, t h a t i t would, he would suck i n r e a l f a s t and i t would move the mucus down.
68 Another F:
parent e x p l a i n e d h i s view of the d i s c r e p a n c y t h i s way: The t h i n g i s the h o s p i t a l i s concerned w i t h any immediate i l l n e s s what i s g o i n ' on w i t h him - that he's n o t f u n c t i o n i n g a l l the time as w e l l as he c o u l d be. Then t h e y ' l l do something about i t . But as f a r as t r y i n g to s e t out a d i e t o r a s t y l e , a l i f e s t y l e f o r him you know, t o p a t t e r n him a f t e r , t h e y ' r e more concerned about when t h i n g s a r e a l r e a d y wrong w i t h him. You know, when he has h i s asthma o r whatever - so t h a t ' s an immediate t h i n g - okay l e t ' s do something about the asthma o r l e t ' s do something about the a l l e r g i c r e a c t i o n . But as f a r as s e e i n g what they can do t o develop him i n , you know, i n , l i k e a normal k i d o r whatever they don't seem t o do much i n t h a t a s p e c t . . . somewhere a l o n g the l i n e they've got t o s t a r t p r e p a r i n g him f o r h i s f u t u r e t o o — and, o r g i v i n g us some k i n d of i d e a o f what we can do t o develop h i s f u t u r e you know, as n o r m a l l y as p o s s i b l e .
D e s p i t e the f r u s t r a t i o n p a r e n t s e x p e r i e n c e d i n r e l a t i o n to the d i f f e r i n g v i e w p o i n t s , they o f t e n seemed t o be v e r y a c c e p t i n g o f the m e d i c a l p e r s p e c t i v e , as i l l u s t r a t e d by the f o l l o w i n g
accounts:
M:
I mean they a l s o f e e l w i t h me b u t they a r e a l s o v e r y i n t e r e s t e d i n s e e i n g , you know, what they c o u l d do w i t h the m e d i c a t i o n - o r i f i t h e l p s o r n o t so t h a t they know the next time.
I:
Mm hm
M:
Which I understand v e r y good too. I t ' s v e r y important too you know t o f i n d out f o r the next, the next time they have t h i s k i d t h a t they know they i f they should g i v e i t o r n o t . I f i t h e l p s o r - I guess f o r the s t a t i s t i c s they have, they need something l i k e that too - t o f i n d o u t how o f t e n i t damages and and how o f t e n i t h e l p s and s t u f f .
M:
W e l l because t h e y ' r e , you know - because i t ' s n o t t h e i r c h i l d I t h i n k . I mean they a l l say what they would do l i k e , i f t h e i r c h i l d was s i c k b u t they cannot f e e l - l i k e t h a t ' s what my d o c t o r a l s o s a i d . He, he was n o t e m o t i o n a l l i k e d i d n ' t have the e m o t i o n a l f e e l i n g s t h a t I , we had. He wasn't i n v o l v e d e m o t i o n a l l y l i k e we were. I n i t i a l l y , many p a r e n t s tended
to accommodate the h e a l t h
p r o f e s s i o n a l ' s p e r s p e c t i v e but t h e r e came a
time i n the t r a j e c t o r y o f
the i l l n e s s e x p e r i e n c e where the r e l a t i o n s h i p changed and the p a r e n t s
69 began t o a s s e r t themselves.
One mother was i n the room when two p h y s i c i a n s
began a procedure on h e r c h i l d . M:
She e x p l a i n e d
the i n t e r a c t i o n t h i s way:
And I was s t a n d i n g t h e r e , I guess he, he thought I was a dummy o r what, I don't know. That's how I f e l t you know. And uh, he saw me - and I was a l s o s t a n d i n g t h e r e when the U o t h e r ] d o c t o r made a v i s i t and he e x p l a i n e d i t a l l t o them, I was s t a n d i n g t h e r e too you know. I don't know how he c o u l d do i t - i n f r o n t of me he was s a y i n g , he was s a y i n g " i t i s e a s i e r t o do [the procedure] t h e r e and we should b u t I'm doing i t h e r e , " you know... And I was a c t u a l l y dummy. I n s t e a d o f s a y i n g h o l d i t , you a r e n o t going t o do i t t h e r e , you should do i t here, you know, I was n o t s a y i n g a n y t h i n g . But next time I , I made sure next time they wouldn't do i t again.
T h i s account i l l u s t r a t e s t h a t the p a r e n t s ' p e r c e p t i o n s s i o n a l s changed over the course
of h e a l t h p r o f e s -
of t h e i r i l l n e s s experience
r e f l e c t e d by changes i n t h e i r i n t e r a c t i o n s .
and were
The p a r e n t s ' r e l a t i o n s h i p
w i t h h e a l t h p r o f e s s i o n a l s appeared t o be governed by the assumption t h a t p r a c t i t i o n e r s a c t with experience
the c h i l d r e n ' s b e s t i n t e r e s t
d i c t a t e d otherwise,
to be a l l i e s .
perspective often d i r e c t e d physicians to
suggest i n t e r v e n t i o n s that were a t odds w i t h what p a r e n t s be h e l p f u l . M:
Again,
However, when
the r e l a t i o n s h i p s changed as the h e a l t h
p r o f e s s i o n a l s were no l o n g e r p e r c e i v e d F u r t h e r , the m e d i c a l
i n mind.
perceived to
One mother d e s c r i b e d i t t h i s way:
He Ethe d o c t o r ] j u s t , he s a i d t o me " I want t o g i v e him n i c e s t r a i g h t f e e t " - he s a i d "make him b e a u t i f u l s t r a i g h t f e e t . " And I s a i d , w e l l i s he going t o walk w i t h them? - oh no, h e ' l l never walk. And I s a i d what's, what's the good o f d o i n ' i t you know, and um he s a i d " w e l l t o g i v e him n i c e s t r a i g h t f e e t . " No, I s a i d , n o t t o go through t h a t p a i n you know, because I was t a l k i n ' t o a l a d y , two or t h r e e women, r i g h t - who's had t h i s done to t h e i r c h i l d r e n and they s a i d i t ' s very, very p a i n f u l . Why should I do t h a t t o him? this jeopardized
s i o n a l s as a l l i e s
the p a r e n t s '
i n the i l l n e s s
ability
experience.
to p e r c e i v e h e a l t h p r o f e s -
70 The
parents
d i d n o t seem to f i n d a r e c i p r o c a l u n d e r s t a n d i n g
or r e s p e c t f o r t h e i r p e r s p e c t i v e from many of the h e a l t h p r o f e s s i o n a l s they
encountered. M:
We were on h o l i d a y s one time. He was due f o r h i s u s u a l assessment and the d o c t o r threw him i n t o t r a c t i o n f o r a week and uh, i n t o c a s t . And t h a t was the hard time because I was s p l i t between my husband and my daughter on t h e i r h o l i d a y s and my son i n the h o s p i t a l - and I'm used t o when he's here I'm h e r e . And t h a t was r e a l l y tough - and he would r e a l l y be upset when we would l e a v e and the nurse s a i d to me one time, "you know you're n o t spending enough time w i t h him." And I could've j u s t slapped h e r one because, I s a i d i f she o n l y knew what I was going through i n s i d e .
T h i s account i l l u s t r a t e s t h a t c h r o n i c c h i l d h o o d the c o n t e x t
i l l n e s s i s managed w i t h i n
o f day-to-day f a m i l y l i f e which means t h a t the i n f l u e n c e s
on the e x p e r i e n c e
a r e complex and can o n l y be understood by a s k i n g the
parents. The
discrepancy
between p r o f e s s i o n a l and p e r s o n a l - p e r s p e c t i v e s
r e s u l t e d i n some p a r e n t s ' p e r c e p t i o n t h a t t h e i r c o n t r i b u t i o n to the c h i l d ' s i l l n e s s experience
was n o t v a l u e d by t h e h e a l t h p r o f e s s i o n a l s :
F:
W e l l the d o c t o r t o l d you to - you should go out more o f t e n or so - the nurses would look a f t e r h e r f o r you.
M:
The f a m i l y d o c t o r , y a . That d i d n ' t make me v e r y , f e e l v e r y much b e t t e r because he made i t f e e l t o me l i k e i f b r e a s t f e e d i n g was n o t important. And I thought i t was so important to me you know, t o , t o nurse h e r . I thought t h a t was t h e b e s t t h i n g I c o u l d do f o r h e r - t o s t a y , t o take c a r e o f h e r . I t appears from these accounts t h a t h e a l t h p r o f e s s i o n a l s ' l a c k
of understanding
and r e s p e c t f o r the p a r e n t s ' p e r s p e c t i v e o f t e n
in parental distress. the p a r e n t s '
.However, t h i s does n o t seem to s i g n i f i c a n t l y
alter
a t t i t u d e toward h e a l t h p r o f e s s i o n a l s i n t h a t few p a r e n t s
were c r i t i c a l o f the care t h e i r c h i l d r e c e i v e d and even when were v o i c e d they were subsequently staff.
results
qualified
complaints
to p r o t e c t o r redeem the
71
The data r e v e a l that parents do expect a c e r t a i n standard of care to be given by h e a l t h p r o f e s s i o n a l s , which they e x p l a i n t h i s way: M:
I shouldn't, I shouldn't have to ask f or -.fchese'zthings :to".be done - i t should be n a t u r a l r o u t i n e , 'cause even the student nurse pointed i t out.
F:
But the thing you think about i s l i k e the things that r e a l l y upset me personally i s a l l the things that happened to him that are unnecessary you know - l i k e the IV and h i s foot s w e l l i n g up and sending him home before h i s s t i t c h e s were healed, you know. They had a l i t t l e b i t of i n f e c t i o n . Things l i k e that where he has to go back i n t o the h o s p i t a l and have other kinds of operations or whatever.
However, even when expectations were not met, the parents were very p r o t e c t i v e of h e a l t h p r o f e s s i o n a l s and always q u a l i f i e d complaints so that the s t a f f p o s i t i o n was supported. M:
When the nurses s t a r t coming i n a f t e r - and bothering the c h i l d and saying time to take your temperature and t h i s and that and the other thing - I would j u s t as soon they didn't, bother. He would probably be asleep by then and had a good night's r e s t . I t ' s hard - I know they're busy too.
M:
So, she was quite upset and phoned me and I got upset so I phoned the doctor - and the doctor t o l d the Head Nurse and the Head Nurse, I guess...
F:
l a i d i t out to them...
M:
l a i d i t out to them - and the nurses there are j u s t great though. They're r e a l l y good w i t h Jamie, I think each and every one of them.
The parents seemed concerned about appearing overly c r i t i c a l but were generally u n w i l l i n g to discuss the underlying r a t i o n a l e f o r t h e i r behaviour. M:
However, one mother explained her reservations t h i s way: You hate to r e a l l y say anything because i f you're not here you don't know what they could be doing to your k i d , you know.
72 The p a r e n t s seem t o f a c e a dilemma i n t h e i r r e l a t i o n s h i p s w i t h health professionals.
On one hand, the p a r e n t s have an ongoing
dependency
upon h e a l t h p r o f e s s i o n a l s , w i t h t h e i r s p e c i a l i z e d knowledge and s k i l l s , to
manage c e r t a i n f a c e t s of t h e i r c h i l d ' s i l l n e s s , w h i l e on the o t h e r
hand, as m e d i a t o r s an advocacy
of t h e i r c h i l d ' s i l l n e s s e x p e r i e n c e , the p a r e n t s have
r e s p o n s i b i l i t y w i t h r e g a r d t o the c h i l d .
p a r t i c i p a n t s were concerned
I t appears t h e
t h a t v i g o r o u s a t t e n t i o n to t h e i r
advocacy
r o l e would j e o p a r d i z e t h e i r r e l a t i o n s h i p s w i t h h e a l t h p r o f e s s i o n a l s which would subsequently
compromise t h e i r c h i l d ' s c a r e .
To c o n c l u d e , s e v e r a l p a r e n t s c l e a r l y a r t i c u l a t e d
the need t o
be t r e a t e d as i n d i v i d u a l s and to be r e c o g n i z e d as v a l u a b l e members of the h e a l t h team. M:
Sometimes when we're s i t t i n g t h e r e w e ' l l be r e a l l y calm and s t u f f , you know - but then i t b u i l d s up t o where you get so mad a t these people because they j u s t t r e a t you l i k e a nobody i t seems.
M:
The nurses a r e p r e t t y good - t h e y ' r e s t a r t i n g , I t h i n k t h e y ' r e s t a r t i n g to get b e t t e r .
I:
What's happened t h a t ' s d i f f e r e n t ?
M:
W e l l they see you i n the hallway and t h e y ' l l stop and t h e y ' l l t e l l you what's going on w i t h Jamie and b e f o r e they would j u s t walk p a s t . Now they stop and they say h i and they t e l l you what Jamie's up t o .
A g a i n , the p a r e n t s ' e x p e c t a t i o n s seem r e l a t e d of
t h e i r i l l n e s s experience.
to the long-term
nature
The d a t a r e v e a l t h a t the p a r t i c i p a n t s d i d
not expect t o be t r e a t e d as newcomers to the system and s e v e r a l p a r e n t s s t a t e d t h a t acknowledgement o f t h e i r l e n g t h y a s s o c i a t i o n was h e l p f u l . M:
You know, one nurse when we came i n was r e a l l y good. I r e a l l y l i k e her. She was supposed to ask us these q u e s t i o n s t h a t we've been asked tons and tons of times - she answered most of them h e r s e l f .
73 For some p a r e n t s , s u p p o r t i v e r e l a t i o n s h i p s w i t h s t a f f were i n c o r p o r a t e d as an ongoing M:
f a c e t of the
trajectory.
She was t h e r e from day one when we f i r s t s t a r t e d b r i n g i n g Dan i n - and t h a t was over twenty y e a r s ago. And so, i t was a r e l a t i o n s h i p t h a t we had going f o r over twenty y e a r s .
Thus i t i s apparent
t h a t the r e l a t i o n s h i p s p a r e n t s develop w i t h h e a l t h
p r o f e s s i o n a l s have a s i g n i f i c a n t
impact
on t h e i r p e r c e p t i o n of the
ill-
ness e x p e r i e n c e i n h o s p i t a l .
Summary T h i s c h a p t e r has p r e s e n t e d n i n e p a r e n t s ' accounts
of
their
p e r c e p t i o n s r e g a r d i n g the h o s p i t a l i z a t i o n of t h e i r c h r o n i c a l l y i l l ren.
The
study found
child-
t h a t h o s p i t a l i z a t i o n i s p e r c e i v e d to be a f a c e t of
the t r a j e c t o r y t h a t d e p i c t s parents'..experience w i t h c h r o n i c i l l n e s s . P a r e n t s d e s c r i b e the t r a j e c t o r y as h a v i n g a b e g i n n i n g , a l a r g e l y p r e d i c t a b l e course and an unknown end. r e c u r r i n g event
H o s p i t a l i z a t i o n , being a frequently
i n the c h r o n i c i l l n e s s e x p e r i e n c e , becomes s e m a n t i c a l l y
d e f i n e d as a normal p a r t of r o u t i n e .
I t i s e x p l a i n e d i n terms of
problems which a r i s e d u r i n g the admission as w e l l as those t h a t q u e n t l y have an impact
upon the course of the
between the h o s p i t a l bureaucracy
t i n g and
their i l l
subse-
child.
to i n t e r f a c e
T h e i r r o l e i s one
the c h i l d ' s i l l n e s s e x p e r i e n c e w i t h i n the b u r e a u c r a t i c s e t -
i s e x p l a i n e d i n terms o f :
to t h e i r a b i l i t y the i l l
and
illness
trajectory.
During h o s p i t a l i z a t i o n , p a r e n t s p e r c e i v e themselves
of m e d i a t i n g
un-
c h i l d and
to cope; and, for
a c q u i r i n g information that i s necessary
c o n t r o l l i n g a s p e c t s of the e x p e r i e n c e f o r
themselves.
74 The p a r e n t s r e q u i r e i n f o r m a t i o n t h a t i s complete,
honest,
s t r a i g h t f o r w a r d , and r e l e v a n t t o the i l l n e s s e x p e r i e n c e ; t h a t i s , i n f o r m a t i o n t h a t d i r e c t l y r e l a t e s t o t h e i r p e r s p e c t i v e o f the c h i l d ' s illness.
They e x p l a i n e d t h a t many i l l n e s s
problems a r e a s s o c i a t e d w i t h
t r y i n g t o get needed i n f o r m a t i o n w i t h i n the b u r e a u c r a t i c s e t t i n g .
These
problems f o c u s e d on the p h y s i c i a n as he i s p e r c e i v e d t o be the primary information source.
Some p a r e n t s use p a s s i v e s t r a t e g i e s t o a c q u i r e i n -
formation while others are very a c t i v e .
I t seems t h a t as h o s p i t a l i z a t i o n
p r o g r e s s e s , many p a r e n t s change t h e i r s t r a t e g i e s and become more a c t i v e i n p u r s u i n g the i n f o r m a t i o n they need. P a r e n t s a r e concerned i l l n e s s experience i n h o s p i t a l . t h i s regard.
The f i r s t
about p o s i t i v e l y m e d i a t i n g
their
child's
Two p a t t e r n s of c o n t r o l were e v i d e n t i n
i s a very a c t i v e , a s s e r t i v e c o n t r o l l i n g of both
the p h y s i c a l and emotional environments f o r the c h i l d and appeared
among
p a r e n t s who had a l e n g t h y e x p e r i e n c e w i t h t h e i r c h i l d ' s i l l n e s s t h a t was c h a r a c t e r i z e d by a h i g h degree o f p r e d i c t a b i l i t y i n the course of m e d i c a l management.
The second
i s a p a s s i v e p a t t e r n o f c o n t r o l i n which the p a r -
ents c o n t r o l l e d t h e i r own a f f e c t i n o r d e r t o p r e s e n t an o p t i m i s t i c to t h e i l l
child.
These p a r e n t s were m e d i a t i n g t h e i r c h i l d ' s
e x p e r i e n c e by c o n t r o l l i n g some a s p e c t s of the emotional
outlook
illness
environment.
However, they d i d n o t appear to be " d o i n g " a n y t h i n g as they were p a s s i v e w i t h r e g a r d t o managing the p h y s i c a l environment. H o s p i t a l i z a t i o n o f the i l l u n c e r t a i n t i e s f o r the p a r e n t s . t i o n a l impact to:
c h i l d a c t i v a t e s many f e a r s and
They a r e r e s o u r c e f u l i n managing the emo-
o f the s i t u a t i o n and e f f e c t i v e l y u t i l i z e s t r a t e g i e s which s e r v e
l i g h t e n the emotional
l o a d ; enhance the p r e d i c t a b i l i t y o f t h e course
of t h e i r e x p e r i e n c e ; and, p o s i t i v e l y r e i n f o r c e t h e i r a b i l i t y
t o cope.
75 The p a r e n t s ' r e l a t i o n s h i p s w i t h i n the h o s p i t a l s e t t i n g
give
meaning to t h e i r i l l n e s s e x p e r i e n c e which i n t u r n d i r e c t s t h e i r
behaviour.
Two
sick
themes were important:
the r e l a t i o n s h i p between p a r e n t and
and, p a r e n t s ' r e l a t i o n s h i p s w i t h h e a l t h c a r e p r o f e s s i o n a l s .
child;
Hospitaliza-
t i o n i s s i g n i f i c a n t to the p a r e n t - s i c k c h i l d r e l a t i o n s h i p i n t h a t p a r e n t s and
c h i l d r e n share a p a r t i c u l a r l y d i f f i c u l t
experience.
The
parents
e x p l a i n e d t h a t p r i o r i t i e s i n d a i l y l i v i n g are r e - a r r a n g e d around hospitalized child sibilities
to the
so t h a t they c o u l d f u l f i l l
their protective
the respon-
child.
Parents' r e l a t i o n s h i p s with h e a l t h care p r o f e s s i o n a l s are c h a r a c t e r i z e d by an awareness of the d i s c r e p a n c i e s between t h e i r t o r y models and
those h e l d by p r a c t i t i o n e r s .
explana-
The p a r e n t s e x p l a i n e d t h a t
t h e i r p e r c e p t i o n s of h e a l t h p r o f e s s i o n a l s changed over the t r a j e c t o r y of t h e i r experience with i l l n e s s .
T h i s was
o f t e n a r e s u l t of i n c i d e n t s which
c o n t r a d i c t e d the p a r e n t s ' assumption t h a t h e a l t h p r o f e s s i o n a l s a c t w i t h the c h i l d ' s b e s t i n t e r e s t
i n mind.
As such, the p a r e n t s ' a b i l i t y
p e r c e i v e c e r t a i n h e a l t h p r o f e s s i o n a l s as a l l i e s was
jeopardized.
i n the i l l n e s s
to
experience
However, as a g e n e r a l s t a n c e , p a r e n t s a r e p r o t e c t i v e of
h e a l t h p r o f e s s i o n a l s and r e l u c t a n t to complain.
The accounts
t h a t p a r e n t s w i s h t o be t r e a t e d as i n d i v i d u a l s and v a l u a b l e members of the h e a l t h team.
emphasized
t o be r e c o g n i z e d as
These f i n d i n g s , a l o n g w i t h
r e s e a r c h l i t e r a t u r e , w i l l be d i s c u s s e d i n the f o l l o w i n g c h a p t e r .
related
Chapter 5 DISCUSSION OF FINDINGS
Introduction T h i s c h a p t e r w i l l d i s c u s s the f i n d i n g s o f the study, as p r e sented i n Chapter 4, i n r e l a t i o n t o the f i n d i n g s o f o t h e r r e s e a r c h e r s .
As
such, the m a t e r i a l w i l l be o r g a n i z e d i n the same manner as the p r e v i o u s chapter.
The l i t e r a t u r e p r e s e n t e d i n Chapter 2 was reviewed f o r the purpose
of p r o v i d i n g a g e n e r a l background f o r t h i s study, whereas t h i s c h a p t e r p r o v i d e an i n - d e p t h e x p l o r a t i o n of r e s e a r c h - b a s e d r e l a t e t o t h e c a t e g o r i e s developed
r e p o r t s which
d u r i n g the phase o f d a t a
I t was n o t the i n t e n t o f the study t o develop r e g a r d i n g the h o s p i t a l i z a t i o n of c h r o n i c a l l y i l l the p a r e n t s ' p e r c e p t i o n s o f the e x p e r i e n c e .
will
specifically
analysis.
a rigorous theory
c h i l d r e n but to explore
In a d d i t i o n , there i s scant
r e s e a r c h l i t e r a t u r e s p e c i f i c a l l y d i r e c t e d toward the study o f c h r o n i c a l l y ill
c h i l d r e n and t h e i r p a r e n t s d u r i n g times o f h o s p i t a l i z a t i o n .
As such,
the l i t e r a t u r e has been used t o e x p l a i n the f i n d i n g s p r e s e n t e d i n t h i s r e p o r t and t o l o c a t e the study i n the c o n t e x t o f r e l a t e d work by o t h e r researchers.
The T r a j e c t o r y of C h r o n i c The
Illness
p a r e n t s who p a r t i c i p a t e d
i n t h i s study e x p l a i n e d h o s p i t a l i z a -
t i o n w i t h i n the context o f t h e i r e x p e r i e n c e s w i t h c h r o n i c c h i l d h o o d
illness.
The d a t a r e v e a l t h a t c h r o n i c i t y , r a t h e r than the s p e c i f i c m e d i c a l d i a g n o s i s , i s the key f a c t o r i n the i l l n e s s e x p e r i e n c e . and
Thus, these p a r e n t s
understand
i n t e r p r e t h o s p i t a l i z a t i o n i n r e l a t i o n t o p a s t e x p e r i e n c e as w e l l as -76-
a n t i c i p a t e d future experiences. the concerns
expressed
medical d i a g n o s i s .
I n a d d i t i o n , t h e r e a r e commonalities i n
d u r i n g h o s p i t a l i z a t i o n r e g a r d l e s s o f the c h i l d ' s
As a f a c e t o f t h e i l l n e s s t r a j e c t o r y , i t i s e v i d e n t
t h a t i l l n e s s problems which a r i s e d u r i n g h o s p i t a l i z a t i o n i n f l u e n c e the course o f the t r a j e c t o r y both w h i l e the c h i l d i s admitted to d i s c h a r g e .
and subsequent
I t i s evident that parents' experiences with chronic c h i l d -
hood i l l n e s s e s a r e complex and t h a t the e x p e r i e n c e s p r o v i d e them w i t h a p a r t i c u l a r frame of r e f e r e n c e f o r v i e w i n g
hospitalization.
S e v e r a l s t u d i e s have examined the impact i l l n e s s on f a m i l y l i f e
of chronic childhood
and w i l l be d i s c u s s e d i n r e l a t i o n t o the p e r v a s i v e ,
ongoing n a t u r e o f the f a m i l y ' s e x p e r i e n c e as w e l l as the r o l e o f h o s p i t a l i z a t i o n i n the i l l n e s s experience.
Hewitt,
et a l . (1970) conducted
of the e a r l i e s t e x p l o r a t i o n s of p a r e n t s ' p e r c e p t i o n s o f day-to-day with a c h r o n i c a l l y i l l
child.
one living
T h i s comprehensive study i n v o l v e d 180 i n t e r -
views o f p a r e n t s h a v i n g c h i l d r e n w i t h c e r e b r a l p a l s y who were b e i n g c a r e d f o r i n the home.
A s t r u c t u r e d i n t e r v i e w i n g schedule was u t i l i z e d
i n t e r v i e w s were tape r e c o r d e d . i n the r e p o r t reviewed; q u e s t i o n s were "designed
The i n t e r v i e w schedule was n o t p r e s e n t e d
however, a g e n e r a l d e s c r i p t i o n s t a t e d t h a t the to o b t a i n f a c t u a l i n f o r m a t i o n about a wide v a r i e t y
of events which a f f e c t e d both the handicapped the f a m i l y " (p.22). f a c t u a l " data. methodologies
and the
c h i l d and o t h e r members o f
Open ended q u e s t i o n s were used
t o accommodate "non
Data a n a l y s i s i n c o r p o r a t e d both q u a l i t a t i v e and q u a n t i t a t i v e as t h e i n f o r m a t i o n was coded a c c o r d i n g t o c a t e g o r i e s which
a r o s e from the i n t e r v i e w s but was then q u a n t i f i e d and a n a l y s e d Verbatim accounts were used
to e x p l i c a t e the q u a n t i f i e d
data.
statistically.
78 The and
f i n d i n g s o f t h a t study i l l u s t r a t e t h a t p a r e n t s
e x p l a i n t h e i r c h i l d ' s i l l n e s s i n r e l a t i o n to i t s impact
life
e x p e r i e n c e and t h a t , f o r them,, ' l i f e ' ,
become i n e x t r i c a b l y i n t e r t w i n e d .
understand on p e r s o n a l
' i l l n e s s ' , and 'treatment'
I t i s e v i d e n t t h a t the p a r e n t s '
e x p e r i e n c e w i t h t h e i r c h i l d ' s i l l n e s s was ongoing
and r e s p o n s i v e t o
changes i n the i l l c h i l d and the f a m i l y . These f i n d i n g s support
the con-
c e p t u a l i z a t i o n p r e s e n t e d i n the c u r r e n t study t h a t p a r e n t s of c h r o n i c a l l y ill
c h i l d r e n have an i l l n e s s e x p e r i e n c e t h a t can be d e p i c t e d as a
t r a j e c t o r y h a v i n g both d u r a t i o n and shape. H o s p i t a l i z a t i o n was one f a c t o r mentioned by the p a r e n t s i n the study by Hewitt
e t a l . (1970) as an i n f l u e n c e i n the c h r o n i c i l l n e s s
experience, but i n f a c t r e c e i v e d v e r y l i t t l e
attention i n their report._This
might be e x p l a i n e d by the f a c t t h a t the p a r e n t s were i n t e r v i e w e d a t home, not d u r i n g a p e r i o d of h o s p i t a l i z a t i o n . of
The d a t a suggest
t h a t i n the scope
day-to-day l i v i n g w i t h c h r o n i c i l l n e s s , h o s p i t a l i z a t i o n p l a y s a r e l a -
t i v e l y minor r o l e b u t t h a t i t i s important of
the ongoing
i l l n e s s experience.
in
subsequent s e c t i o n s as i t appears
t o view i t w i t h i n the c o n t e x t
Reference
to t h i s study w i l l be made
t h a t p a r e n t s ' day-to-day concerns and
s t r a t e g i e s f o r managing the c h i l d ' s i l l n e s s a r e s i m i l a r to those by the p a r e n t s who p a r t i c i p a t e d
i n the c u r r e n t study.
Again,
a f i n d i n g o f the c u r r e n t study t h a t i n o r d e r t o understand
expressed
this
supports
parents' per-
c e p t i o n s o f t h e i r c h r o n i c a l l y i l l c h i l d ' s h o s p i t a l i z a t i o n i t must be viewed i n the c o n t e x t o f the i l l n e s s McCollum and Gibson a d a p t a t i o n to c h r o n i c i l l n e s s c h i l d with c y s t i c f i b r o s i s .
experience.
(1970) gathered
data regarding f a m i l y
from the p a r e n t s o f 56 f a m i l i e s h a v i n g a Again the d a t a were b o t h q u a l i t a t i v e and
79 q u a n t i t a t i v e and were c o l l e c t e d from t h r e e s o u r c e s :
a m u l t i p l e choice
q u e s t i o n n a i r e c o n c e r n i n g the c h a r a c t e r i s t i c s and management of
children
with c y s t i c f i b r o s i s ;
social
i n t e r v i e w s w i t h p a r e n t s by a p s y c h i a t r i c
worker " t o e x p l o r e the issues_'of the d i s e a s e t h a t were of p a r t i c u l a r s i g n i f i c a n c e to each f a m i l y " (p.572); a p e d i a t r i c i a n and s o c i a l worker.
and, monthly group meetings w i t h
The d a t a from the q u e s t i o n n a i r e s
were q u a n t i f i e d but i t i s u n c l e a r what was
c o n s i d e r e d t o be
r e g a r d to the i n t e r v i e w s and monthly meetings or how and a n a l y s e d .
McCollum and Gibson
(1970) found
data~with
the d a t a were r e c o r d e d
t h a t f a m i l y a d a p t a t i o n to
c y s t i c f i b r o s i s i s p r o g r e s s i v e i n t h a t i t i s ongoing
and
changes over
time.
F u r t h e r , they i d e n t i f i e d some s i g n i f i c a n t p o i n t s i n the "continuum of the e x p e r i e n c e " t h a t became f o c i of p a r e n t a l concern.
The
f i n d i n g s suggest
that
t h e r e a r e common themes i n the p a r e n t a l e x p e r i e n c e of l i v i n g w i t h a c h i l d h a v i n g c h r o n i c i l l n e s s but
t h a t the way
e x p l a i n e d v a r y from f a m i l y to f a m i l y . i n g s o f Hewitt
the themes a r e understood T h i s i s congruent
w i t h the
and find-
e t a l . (1970).
Hewitt
e t a l . (1970) s t u d i e d p a r e n t s of c h i l d r e n w i t h
cerebral
p a l s y , w h i l e McCollum and Gibson
(1970) were i n t e r e s t e d i n the impact
c y s t i c f i b r o s i s on f a m i l y l i f e .
T h e r e f o r e , c o n c l u s i o n s r e g a r d i n g com-
m o n a l i t i e s i n the p a r e n t s ' e x p e r i e n c e s w i t h c h r o n i c c h i l d h o o d
of
illness
cannot be g e n e r a l i z e d to f a m i l i e s e x p e r i e n c i n g d i f f e r e n t i l l n e s s e s . However, the s i m i l a r i t i e s i n the f i n d i n g s i n d i c a t e t o t h i s w r i t e r t h a t some commona l i t i e s do e x i s t i n the p a r e n t a l e x p e r i e n c e of h a v i n g a c h i l d w i t h c h r o n i c i l l n e s s which a r e independent
of m e d i c a l d i a g n o s i s .
This i s further
s u b s t a n t i a t e d i n a survey of l o n g term i l l n e s s e s among c h i l d r e n i n E r i e Country,
New
York ( S u l t z e t a l . , 1972). The r e s e a r c h e r s used m e d i c a l
records
80 as the b a s i c source
of e p i d e m i o l o g i c a l i n f o r m a t i o n w h i l e " a d d i t i o n a l
demographic and s o c i a l data were o b t a i n e d p l e of t h e study p o p u l a t i o n comprised the m e d i c a l sequently
families"
r e c o r d survey
from home i n t e r v i e w s o f a sam-
(p.27).
A t o t a l of 606 cases
and, of these,
390 f a m i l i e s were sub-
interviewed using a structured questionnaire.
were n o t p r o v i d e d
Sample
questions
i n the r e p o r t ; however, c o n s t r u c t i o n and use of t h e
q u e s t i o n n a i r e were d i s c u s s e d and appear t o have r e c e i v e d r i g o r o u s eration.
The d a t a were used t o d e s c r i b e and q u a n t i f y t o some e x t e n t the
impact o f l o n g term d i s e a s e on t h e a f f e c t e d c h i l d and h i s f a m i l y . al.
(1972) found t h a t c e r t a i n problems were repeated
and
seemed common to f a m i l i e s w i t h c h r o n i c a l l y i l l
diagnosis.
consid-
T h i s supports
i n the p a r e n t a l responses
c h i l d r e n regardless of
the f i n d i n g of common themes among t h e p a r e n t s '
accounts i n the c u r r e n t study
and i n d i c a t e s that an u n d e r s t a n d i n g
concerns which a r e t y p i c a l of f a m i l i e s h a v i n g may be a_.useful guide f o r e x p l o r i n g i n d i v i d u a l The
c u r r e n t study
chronically i l l
S u l t z e t a l . (1972) r e p o r t e d
of the
children
experiences.
found t h a t p a r e n t s ' p e r c e p t i o n s
of h o s p i t a l i z a -
t i o n changed over time, i n response to changes i n e x p e r i e n c e .
Similarly,
s e v e r a l f i n d i n g s which address t h e i n f l u e n c e o f
d u r a t i o n on t h e i l l n e s s e x p e r i e n c e .
F o r i n s t a n c e , i t appears t h a t t h e
l o n g e r t h e d u r a t i o n of t h e c h i l d ' s i l l n e s s the h i g h e r mothers who had s p e c i a l t r a i n i n g which f a c i l i t a t e d the more e x t e n s i v e
Sultz et
the p r o p o r t i o n o f the
the care of t h e c h i l d ;
t h e u t i l i z a t i o n o f community s e r v i c e s ; and the g r e a t e r
the p r o p o r t i o n o f p a r e n t s
r e p o r t i n g decreased
social activity.
I t must
be remembered t h a t the f i n d i n g s o f S u l t z e t a l . p e r t a i n t o a wide v a r i e t y of medical
diagnoses which i n d i c a t e d t o the w r i t e r t h a t
i l l n e s s i s experienced
chronic
d i f f e r e n t l y over time and t h a t t h e d u r a t i o n o f
81 the f a m i l y ' s e x p e r i e n c e i n f l u e n c e s the responses g i v e n to the T h i s l e n d s support t o the c u r r e n t study's f i n d i n g t h a t as a f a c e t o f the t r a j e c t o r y of c h r o n i c i l l n e s s , managed d i f f e r e n t l y over
illness.
hospitalization,
i s p e r c e i v e d and
time.
In a d d i t i o n , S u l t z e t a l . (1972) found t h a t the c h i l d ' s c h r o n i c i l l n e s s was
managed predominantly by the p a r e n t s w i t h i n the home, w i t h
45% not r e c e i v i n g c o n t i n u o u s , a c t i v e m e d i c a l c a r e and 33% r e l y i n g on a physician i n p r i v a t e p r a c t i c e f o r medical a s s i s t a n c e .
A g a i n t h i s empha-
s i z e s t h a t m e d i c a l management p l a y s a r e l a t i v e l y minor r o l e i n many
o f a m i l i e s ' experiences with chronic childhood i l l n e s s .
These f i n d i n g s are
congruent w i t h the e x p l a n a t i o n s g i v e n by p a r t i c i p a n t s i n the c u r r e n t study t h a t h o s p i t a l i z a t i o n i s o n l y one ness.
The
f a c e t of managing a c h i l d ' s c h r o n i c
ill-
f i g u r e s a l s o s e r v e t o a c c e n t u a t e the competency o f most p a r e n t s
i n p r o v i d i n g c a r e and
coping w i t h i l l n e s s problems on a day-to-day b a s i s .
I t seems r e a s o n a b l e t o assume t h a t the p a r e n t a l p a t t e r n o f
control
e s t a b l i s h e d over the course of managing the c h i l d ' s i l l n e s s a t home would l i k e l y i n f l u e n c e p a r e n t a l b e h a v i o u r i n h o s p i t a l , which appears
t o be
the
case i n the c u r r e n t study. Burton
(1975) t r a c e d a l l the f a m i l i e s known to have a c h i l d
c y s t i c f i b r o s i s i n Northern I r e l a n d .
A l l but one f a m i l y agreed
to p a r t i c i -
pate i n the study which meant t h a t 97 p a r e n t s and 58 c h i l d r e n i n 53 were i n t e r v i e w e d a t home r e g a r d i n g t h e i r e x p e r i e n c e w i t h c y s t i c The
with
families
fibrosis.
i n t e r v i e w s c h e d u l e s were d e v i s e d by the author and were not made a v a i l -
a b l e to the r e a d e r .
Data on the c h i l d r e n were gathered
through the use of
s t a n d a r d i z e d assessment t e s t s and assessment of s o c i a l f u n c t i o n i n g the c h i l d ' s t e a c h e r .
It is difficult
to determine
by
the adequacy of these
82 d a t a c o l l e c t i o n methods or to judge due
the a p p r o p r i a t e n e s s of d a t a a n a l y s i s
to l a c k of i n f o r m a t i o n i n the r e p o r t .
The finding's were p r i m a r i l y
r e p o r t e d as d e s c r i p t i v e s t a t i s t i c s w i t h v e r b a t i m comments u t i l i z e d enhance the r e a d e r ' s Burton's
to
understanding.
(1975) study c i t e s h o s p i t a l i z a t i o n as a s i g n i f i c a n t
f a c e t of the f a m i l y ' s e x p e r i e n c e w i t h c y s t i c f i b r o s i s .
F u r t h e r , the d a t a
suggest t h a t the impact h o s p i t a l i z a t i o n e x e r t s on the t r a j e c t o r y
extends
beyond the a c t u a l d u r a t i o n o f the h o s p i t a l admission as evidenced by
the
f i n d i n g t h a t 80% o f the young c h i l d r e n i n the study e x h i b i t e d some subsequent d i f f i c u l t i e s s e t t l i n g back i n t o t h e i r home environment. some c h i l d r e n had
long-lasting fears associated with p a i n f u l
In a d d i t i o n , procedures.
A l t h o u g h these f i n d i n g s r e l a t e to p a r e n t s ' p e r c e p t i o n s of the e f f e c t s of h o s p i t a l i z a t i o n on t h e i r i l l
c h i l d r e n , they l e n d support to the i n t e r p r e t a t i o n
of the d a t a i n the c u r r e n t study.
The p a r e n t s who
participated
i n the
p r e s e n t study e x p l a i n e d the r a m i f i c a t i o n s o f h o s p i t a l i z a t i o n i n terms o f the difficulties
they e x p e r i e n c e d which, i n many i n s t a n c e s , were a s s o c i a t e d
w i t h changes i n the b e h a v i o u r o f the i l l i n g s r e i n f o r c e the importance which was
children.
As w e l l , Burton's
of p a r e n t s ' r o l e i n p r o t e c t i n g t h e i r
find-
children
so c l e a r l y s t a t e d by p a r e n t s i n the c u r r e n t s t u d y . It i s d i f f i c u l t
t o determine
i n the s t u d i e s c i t e d
from
the
l i t e r a t u r e whether the i n c l u s i o n o r e x c l u s i o n of h o s p i t a l i z a t i o n as an important
f a c t o r i n the i l l n e s s e x p e r i e n c e r e s t s on the r e s e a r c h e r s '
c o n s t r u c t i o n of t h e i r i n t e r v i e w g u i d e s . q u e s t i o n n a i r e s which may
A l l o f the s t u d i e s used
i n d i c a t e that the r e s e a r c h e r s predetermined
areas of the i l l n e s s e x p e r i e n c e to .be e x p l o r e d . stated, this is d i f f i c u l t
structured the
However, as p r e v i o u s l y
to v e r i f y as the q u e s t i o n n a i r e s were not p u b l i s h e d .
83 As p r e v i o u s l y s t a t e d , Burton's support
study i s the o n l y one
that gives d i r e c t
to the f i n d i n g t h a t h o s p i t a l i z a t i o n i s an important
parents' experience with chronic childhood i l l n e s s .
f a c e t of the
The p a r e n t s
who
p a r t i c i p a t e d i n the c u r r e n t study e x p l a i n e d t h a t h o s p i t a l i z a t i o n i s significant
to the i l l n e s s e x p e r i e n c e because i t i s a f r e q u e n t l y repeated
aspect of i l l n e s s management. I t i s apparent
from the s t u d i e s c i t e d t h a t the r e s e a r c h r e l a t e d
to f a m i l y e x p e r i e n c e w i t h c h r o n i c c h i l d h o o d i l l n e s s i s l i m i t e d and not been d i r e c t e d a t a s y s t e m a t i c e x p l o r a t i o n from the p a r e n t s ' tive.
has
perspec-
In a d d i t i o n , the s t u d i e s have not focused on h o s p i t a l i z a t i o n as a
f a c e t of the c h r o n i c i l l n e s s e x p e r i e n c e . a v a i l a b l e tend t o support of t h e i r c h r o n i c a l l y i l l e x p e r i e n c e and
However, the d a t a t h a t are
the f i n d i n g s t h a t p a r e n t s view the h o s p i t a l i z a t i o n c h i l d w i t h i n the context of the ongoing
t h a t h o s p i t a l i z a t i o n may
have a s i g n i f i c a n t impact
t r a j e c t o r y of the i l l n e s s e x p e r i e n c e which extends admission
on
the
beyond the p e r i o d of
to h o s p i t a l .
I n t e r f a c e w i t h the Acquiring
Bureaucracy
Information
T h i s study found
t h a t d u r i n g times of h o s p i t a l i z a t i o n ,
i n t e r f a c e between the bureaucracy the purpose of m e d i a t i n g to o r i e n t themselves of how
illness
and t h e i r c h r o n i c a l l y i l l
the c h i l d r e n ' s i l l n e s s e x p e r i e n c e s .
to the b u r e a u c r a t i c s e t t i n g and
parents
children for In o r d e r
to g a i n an
understanding
the h o s p i t a l i z a t i o n i s : l i k e l y to p r o g r e s s , p a r e n t s r e q u i r e i n f o r m a t i o n
t h a t i s honest,
complete,
s t r a i g h t f o r w a r d , and d i r e c t l y r e l a t e d
p e r s p e c t i v e of the c h i l d ' s i l l n e s s .
to t h e i r
U n f o r t u n a t e l y , the bureaucracy
poses
some major d i f f i c u l t i e s The
f o r parents
p a r t i c i p a n t s i n t h i s study
i n terms of a c q u i r i n g i n f o r m a t i o n .
explained
that i t i s d i f f i c u l t
i n f o r m a t i o n from p h y s i c i a n s and nurses are not information sources. information.
Parents
considered
to
to be
elicit primary
v a r y i n t h e i r approach toward a c q u i r i n g
A l l of the parents who
p a r t i c i p a t e d i n the c u r r e n t
study
a c t i v e l y sought i n f o r m a t i o n ; however, t h i s d i d not n e c e s s a r i l y mean t h a t t h e i r i n t e r a c t i o n s w i t h h e a l t h p r o f e s s i o n a l s were a c t i v e i n t h i s For example, some p a r e n t s
used an i n t e r m e d i a r y
such as a r e l a t i v e
t r a n s l a t e i n f o r m a t i o n i n t o u n d e r s t a n d a b l e terms.
The
data give
t h a t a c q u i r i n g i n f o r m a t i o n i s an ongoing concern f o r a l l p a r e n t s chronically i l l
c h i l d r e n r e g a r d l e s s of how
regard. to
evidence of
knowledgeable they a r e about
the c h i l d r e n ' s d i s e a s e s .because the a s s o c i a t e d i l l n e s s problems are c o n t i n u a l l y changing.
Several studies explore
the i s s u e s a s s o c i a t e d w i t h
p a r e n t a l need f o r i n f o r m a t i o n about t h e i r c h i l d ' s c h r o n i c i l l n e s s and
will
be d i s c u s s e d below. Hayes M o r r i s , et a l . (1982) conducted a q u a l i t a t i v e study
of p a r e n t s ' h o s p i t a l r e l a t e d s t r e s s t h a t was
to the c u r r e n t study.
These r e s e a r c h e r s
framework f o r the purposes of t h e i r study with a semi-structured
very s i m i l a r i n design
adapted Kleinman's (1977, and
used i n - d e p t h
i n t e r v i e w guide f o r data c o l l e c t i o n .
et a l . (1982) "sought s t r e s s i n f o r m a t i o n c o n c e r n i n g
as w e l l as i n f o r m a t i o n l e a d i n g to an understanding s t r e s s " and
" t h e i r perceptions
r o l e s i n s t r e s s management" (p.2). a l i z e d with The
cancer
of "how
Hayes M o r r i s (patho-
and management" parents
of h e a l t h team members'
Forty-two p a r e n t s
of c h i l d r e n h o s p i t -
or o t h e r long-term i l l n e s s e s p a r t i c i p a t e d i n the
i n t e r v i e w s were tape r e c o r d e d ,
1978)
interviewing
description
p h y s i o l o g y ) , cause ( e t i o l o g y ) , symptoms, degree of concern,
managed t h e i r own
research
t r a n s c r i b e d , and s y s t e m a t i c a l l y
study.
85 analysed
f o r content
u s i n g the method of constant
These r e s e a r c h e r s
comparative a n a l y s i s .
found t h a t the p a r t i c i p a n t s were concerned
about the q u a l i t y of i n f o r m a t i o n they r e c e i v e d .
The
parents
explained
t h a t they need i n f o r m a t i o n w h i c h i s more d e t a i l e d , "more c l e a r l y repeated
more o f t e n , s t a t e d i n terms they u n d e r s t a n d , and
times when they p e r c e i v e they need i t " (p. 18).
The
presented,
offered at
p a r e n t s who
partic-
i p a t e d i n the c u r r e n t study a l s o emphasized t h e s e p o i n t s i n t h e i r a c c o u n t s ; however, the'key f a c t o r from t h e i r p o i n t of view was t h a t r e l a t e d to t h e i r e x p e r i e n c e
with i l l n e s s .
of i n f o r m a t i o n g i v e n i s c r i t i c a l to p a r e n t s
receiving information
I n o t h e r words, the k i n d
and more i n f o r m a t i o n
from the p r o f e s s i o n a l p e r s p e c t i v e w i l l o f t e n not address the needs.
T h i s i s s u p p o r t e d by the a u t h o r s '
a n o t h e r , d i f f e r e n t one"
(Hayes M o r r i s , et a l . , 1982,
L i k e the p a r e n t s who
t h a t they have
p a r t i c i p a t e d i n the c u r r e n t s t u d y ,
as m e d i a t o r s of t h e i r c h i l d r e n ' s e x p e r i e n c e s both studies r e v e a l that parents
p.19).
staff
p.21).
p a r t i c i p a n t s i n the study by Hayes M o r r i s e t a l . (1982) saw
t h e i r r o l e s of m e d i a t o r and
parents'
c o n c l u s i o n t h a t "as
members we have one v i e w of what p a r e n t s need to know, and
given
in hospital.
themselves The
data i n
"need t o u n d e r s t a n d i n o r d e r to
interpreter"
I n a d d i t i o n , the p a r e n t s who
the
fulfill
(Hayes M o r r i s et a l . , 1982,
p a r t i c i p a t e d i n b o t h s t u d i e s viewed
p h y s i c i a n s as the p r i m a r y s o u r c e of i n f o r m a t i o n w h i l e n u r s e s were not as " f i r s t - l i n e
explainers"
(Hayes M o r r i s e t a l . , 1982,
i n d i c a t e s t h a t n u r s e s need t o r e e v a l u a t e
p.21).
t h e i r r o l e w i t h regard
p r o v i d i n g i n f o r m a t i o n p a r t i c u l a r l y i n l i g h t of t h e . f i n d i n g t h a t need f o r i n f o r m a t i o n i s o f t e n not met.
This to parents'
F u r t h e r , the f i n d i n g s s e r v e
to
emphasize t h a t p a r e n t s know what they r e q u i r e i n terms of i n f o r m a t i o n q u i c k l y l e a r n w h i c h i n d i v i d u a l s w i l l b e s t meet t h e i r needs.
seen
and
86 Canam's (1980) e x p l o r a t o r y , d e s c r i p t i v e study examined communication p a t t e r n s i n e l e v e n f a m i l i e s of c h i l d r e n w i t h f i b r o s i s and attempted
to i d e n t i f y the guidance
t a l k i n g about the i l l n e s s .
E l e v e n mothers and
cystic
p a r e n t s had two
received i n
f a t h e r s were i n t e r -
viewed u s i n g a s e m i - s t r u c t u r e d i n t e r v i e w guide h a v i n g both open ended and
closed questions.
v e r b a t i m and
The
i n t e r v i e w s were tape r e c o r d e d , t r a n s c r i b e d
the d a t a a n a l y z e d u s i n g d e s c r i p t i v e s t a t i s t i c s .
Canam
found t h a t many p a r e n t s needed i n f o r m a t i o n about the d i s e a s e i n o r d e r to understand
the i l l n e s s
and
to reduce
t h e i r f e a r of the unknown.
t i o n , h a v i n g i n f o r m a t i o n about the d i s e a s e was in facilitating
their ability
p a r e n t s were concerned
c i t e d by p a r e n t s as
to d i s c u s s t h e i r c h i l d ' s i l l n e s s .
about r e c e i v i n g i n f o r m a t i o n "from
view" but some p a r e n t s found
Canam's study addressed
r e g a r d i n g communication about t h e i r c h i l d ' s i l l n e s s not d e a l w i t h h o s p i t a l i z a t i o n .
t h e i r p o i n t of
parents' perception
and
t h e r e f o r e does
on p a r e n t s ' u n d e r s t a n d i n g
cope w i t h t h e i r c h i l d ' s i l l n e s s which one would expect
t r u e of h o s p i t a l i z a t i o n as a f a c e t of the i l l n e s s the f i n d i n g s are congruent
and
be
In
any
w i t h those of the c u r r e n t study
and
experiences
illness.
Kupst et a l . (1976) were concerned
that parents f r e q u e n t l y
misunderstood
the m e d i c a l i n f o r m a t i o n g i v e n to them about t h e i r
c o n d i t i o n and
t h e r e f o r e designed a study to determine
to know as w e l l as what they a c t u a l l y understood. of
ability
to a l s o
experience.
r e i n f o r c e the view t h a t common themes e x i s t among p a r e n t s ' with chronic childhood
The
However i t seems t h a t , i n g e n e r a l ,
adequate i n f o r m a t i o n has an impact
event,
helpful
t h e i r a c q u i s i t i o n of i n f o r m a t i o n i n h i b i t e d
by f e a r of a s k i n g q u e s t i o n s .
to
In a d d i -
c h i l d r e n under the age
child's
what p a r e n t s wanted
Eighty-seven
parents
of f o u r t e e n and w i t h c o n g e n i t a l h e a r t d e f e c t s
87 p a r t i c i p a t e d i n the study.
The
study was
s t a n d a r d i z e d q u e s t i o n n a i r e s to determine
w e l l c o n t r o l l e d and p a r e n t s ' s h o r t and
used
long-term
r e c a l l of m e d i c a l i n f o r m a t i o n as w e l l as open ended q u e s t i o n s t o
elicit
the p a r e n t s ' p e r c e p t i o n s r e g a r d i n g t h e i r needs f o r i n f o r m a t i o n . The
r e s e a r c h e r s found t h a t p a r e n t s tend to "remember b e t t e r
those matters which i n v o l v e d them d i r e c t l y " in physical activity, surgery.
(p.29).such
i n s t r u c t i o n about m e d i c a t i o n and
as
limitations
treatment
like
They tend not to r e c a l l the areas which a r e more concerned
academic c l i n i c a l i n f o r m a t i o n such as hemodynamics. t r u e of both s h o r t and
long-term
with
These f i n d i n g s were
r e c a l l which seems to i n d i c a t e t h a t
p a r e n t s s e l e c t i v e l y a t t e n d to i n f o r m a t i o n t h a t has d i r e c t i m p l i c a t i o n s f o r t h e i r i l l n e s s experience.
T h i s i s congruent
w i t h Canam's (1980) f i n d i n g
t h a t p a r e n t s want i n f o r m a t i o n r e l e v a n t to t h e i r p o i n t of view and the f i n d i n g of the p r e s e n t study t h a t i n f o r m a t i o n i s deemed when i t r e l a t e s d i r e c t l y chronic i l l n e s s e s . to i n f o r m a t i o n was
supports
important
to the p a r e n t s ' e x p e r i e n c e s w i t h t h e i r c h i l d r e n ' s
Kupst et a l . (1976) a l s o found
that parents' reaction
i n f l u e n c e d by p r e v i o u s e x p e r i e n c e which
further
s u b s t a n t i a t e s the p r o g r e s s i v e n a t u r e of the i l l n e s s e x p e r i e n c e as d e p i c t e d by a t r a j e c t o r y i n the c u r r e n t study.
When the c h i l d ' s c o n d i t i o n changed,
the p a r e n t s ' a n x i e t y seemed l e s s r e l a t e d to the c o n d i t i o n than to the p a r e n t s ' p s y c h o l o g i c a l s e t . I f they a n t i c i p a t e d h e a r i n g t h a t s u r g e r y would be done soon, and were informed t h a t the s t a t u s had changed so s u r g e r y wasn't n e c e s s a r y , t h i s f r e q u e n t l y d i s t u r b e d them. In the l a t e r . i n t e r v i e w , they c o u l d not understand how the c a r d i o l o g i s t s c o u l d change t h e i r minds. I t seemed to us t h a t they were l o o k i n g f o r d e f i n i t e answers, were uncomfortable w i t h u n c e r t a i n t y , and found i t d i f f i c u l t to a c c e p t a wait-and-see a t t i t u d e (p.29). T h i s r e a c t i o n i s understandable of the p a r e n t s ' ongoing
to the w r i t e r when viewed i n the
experience with i l l n e s s .
light
I t seems r e a s o n a b l e t h a t
88 a change i n the c h i l d ' s m e d i c a l c o n d i t i o n which was u n a n t i c i p a t e d , incongruent w i t h the p a r e n t s ' p e r c e p t i o n of t h e i r c h i l d ' s i l l n e s s
and
seemingly u n r e l a t e d t o t h e i r i l l n e s s e x p e r i e n c e would be d i f f i c u l t understand
and a c c e p t .
to have changed was
For the p a r e n t s , the o n l y t h i n g which
The open ended q u e s t i o n s used determined who
i n the study by Kupst
importance account. et a l . (1976)
t h a t the p a r e n t s d i d not w i s h to t a l k t o a nonmedical
would e x p l a i n m e d i c a l i n f o r m a t i o n i n layman's language
afraid
appeared
the p h y s i c i a n ' s mind, which u n d e r l i n e s the
of g i v i n g e x p l a n a t i o n s t h a t take the p a r e n t s ' e x p e r i e n c e i n t o
the nonmedical
The p a r e n t s who
to
person
as they were
person would not know enough to answer q u e s t i o n s .
participated
i n the c u r r e n t study f o c u s e d t h e i r need f o r
i n f o r m a t i o n on d i r e c t c o n t a c t w i t h the p h y s i c i a n which may
have r e s u l t e d
from the same u n d e r l y i n g concern.
T h i s i m p l i e s t h a t nurses are p e r c e i v e d
i n the same c a t e g o r y as nonmedical
people which does seem to be the case
i n the c u r r e n t study. Hewitt e t a l . (1970) found t h a t p a r e n t s wished
to r e c e i v e
i n f o r m a t i o n as soon as the p h y s i c i a n suspected something
was
the c h i l d and
The r e p o r t a l s o
t h a t r e p e a t e d e x p l a n a t i o n s were r e q u i r e d .
wrong w i t h
i n d i c a t e s t h a t the p a r e n t s were aware they needed to d i s c u s s t h e i r i l l n e s s but were f r e q u e n t l y unable
to i n i t i a t e the n e c e s s a r y
w i t h p h y s i c i a n s or t o ask q u e s t i o n s . of Kupst
child's
interaction
T h i s seems r e l a t e d to the
finding
e t a l . (1976) t h a t p a r e n t s wanted the p h y s i c i a n to encourage
questions.
Both s t u d i e s c i t e f i n d i n g s t h a t are congruent w i t h those of
the c u r r e n t study r e g a r d i n g p a r e n t a l d i f f i c u l t i e s w i t h a c q u i r i n g
informa-
t i o n ; however, n e i t h e r study examined the s t r a t e g i e s p a r e n t s use to get the i n f o r m a t i o n they need.
The
s t u d i e s reviewed
i n t h i s chapter
J.
relate
to p a r e n t s ' e x p e r i e n c e s w i t h d i f f e r e n t m e d i c a l diagnoses a t v a r y i n g times throughout
the i l l n e s s t r a j e c t o r y which suggests t h a t
of i n f o r m a t i o n i s t y p i c a l l y an ongoing ill
children.
acquisition
concern f o r p a r e n t s of c h r o n i c a l l y
I t i s a l s o e v i d e n t that many p a r e n t s do not r e c e i v e the
i n f o r m a t i o n they p e r c e i v e as n e c e s s a r y t o t h e i r u n d e r s t a n d i n g of the i l l n e s s experience.
G r e a t e r than 50% of the mothers who
the study by Hewitt
participated i n
et a l . (1970) s t a t e d that they had not had
c h i l d ' s c o n d i t i o n e x p l a i n e d t o them. p a r e n t s i n t h e . c u r r e n t study who
T h i s was
their
a l s o expressed by
were e a r l y i n t h e i r i l l n e s s
the
experiences.
S e v e r a l authors argue t h a t many p a r e n t s a r e p e r i o d i c a l l y overwhelmed d u r i n g the course of the c h r o n i c i l l n e s s e x p e r i e n c e which i n h i b i t s their ability concluded
to a c t i v e l y a c q u i r e i n f o r m a t i o n .
Kupst e t
al.(1976)
t h a t communication w i t h p a r e n t s would be enhanced i f t h e i r needs
were a n t i c i p a t e d by h e a l t h p r o f e s s i o n a l s which i s c e r t a i n l y a p p l i c a b l e to the p r e s e n t
study.
Burton's felt
themselves
(1975) study found
not to be f u l l y
t h a t the m a j o r i t y of p a r e n t s
informed r e g a r d i n g t h e i r c h i l d ' s
r e p o r t e d s e e k i n g i n f o r m a t i o n toward a more complete I n t e r e s t i n g l y , the m a j o r i t y of p a r e n t s who fully
(p.55).
illness
understanding.
d i d b e l i e v e themselves
informed " c o n t i n u e d to s e a r c h subsequently on t h e i r own
information"
who
to be
for further
A g a i n , t h i s s u p p o r t s the f i n d i n g s of the s t u d i e s
p r e v i o u s l y c i t e d which suggest
t h a t a c q u i s i t i o n of i n f o r m a t i o n i s an
i n t e g r a l f a c e t of the i l l n e s s t r a j e c t o r y and u n d e r s t a n d i n g of the i l l n e s s e x p e r i e n c e .
i s d i r e c t e d a t a broad
Further, this i s consistent
w i t h the f i n d i n g of the c u r r e n t study t h a t t h e r e i s always more f o r the p a r e n t s to know and understand time.
as the demands of the i l l n e s s change over
To summarize, the r e s e a r c h l i t e r a t u r e lends support
to the
f i n d i n g s of the p r e s e n t study t h a t a c q u i s i t i o n of i n f o r m a t i o n i s i n t e g r a l to p a r e n t s ' u n d e r s t a n d i n g i l l n e s s and
of t h e i r e x p e r i e n c e w i t h c h r o n i c c h i l d h o o d
the i n f o r m a t i o n t h a t i s deemed important
d i r e c t i m p l i c a t i o n s f o r t h e i r experience.
i s t h a t which
I t i s evident that parents'
need f o r i n f o r m a t i o n i s a f a c e t of coping w i t h i l l n e s s and related
to the h o s p i t a l s e t t i n g .
from d a t a p r e s e n t e d
i s not u n i q u e l y
Parental strategies for acquiring
i n f o r m a t i o n were not d i s c u s s e d i n any apparent
has
of the r e p o r t s c i t e d .
It i s
i n t h i s r e p o r t t h a t some p a r e n t s
approach
the a c q u i s i t i o n of i n f o r m a t i o n v e r y p a s s i v e l y ; t h a t i s , they tend not to a c t i v e l y i n i t i a t e of
i n t e r a c t i o n w i t h h e a l t h p r o f e s s i o n a l s f o r the purpose
acquiring information.
T h i s might l e a d h e a l t h p r o f e s s i o n a l s to t h i n k
t h a t the parent i s adequately
informed which would be an
erroneous
assumption.
Managing the C h i l d ' s I l l n e s s E x p e r i e n c e T h i s study found
t h a t p a r e n t s wish
i n t e r a c t i o n s w i t h the h o s p i t a l bureaucracy
in Hospital to mediate t h e i r c h i l d r e n ' s
f o r the purposes
of p r o t e c t i n g
the c h i l d r e n and n o r m a l i z i n g t h e i r e x p e r i e n c e s i n h o s p i t a l . Some p a r e n t s take an a c t i v e c o n t r o l l i n g s t a n c e where they f o c u s on m a n i p u l a t i n g ren's p h y s i c a l environment, which was initiating,
affect
ren's e m o t i o n a l environments; ability
to cope.
T h i s was
child-
u s u a l l y e x p l a i n e d i n terms of
c o o r d i n a t i n g and p r o v i d i n g c a r e .
c o n t r o l l i n g t h e i r own
the
Other p a r e n t s f o c u s
i n o r d e r t o p o s i t i v e l y i n f l u e n c e the
on child-
t h a t i s , s t r e n g t h e n the c h i l d r e n ' s own
termed a p a s s i v e p a t t e r n of c o n t r o l because
these p a r e n t s a r e p a s s i v e i n t h e i r i n t e r a c t i o n s w i t h h e a l t h p r o f e s s i o n a l s yet
s t i l l manage t o c o n t r o l one
aspect of t h e i r c h i l d r e n ' s e x p e r i e n c e s
91 in hospital. the
As
the
implications
l i k e l i h o o d of f r e q u e n t l y
become more a c t i v e and
of c h r o n i c i t y become c l e a r , i n terms of
repeated h o s p i t a l i z a t i o n , many p a r e n t s
assertive
in controlling their
children's
experiences i n h o s p i t a l . There i s l i t t l e r e s e a r c h l i t e r a t u r e p e r t a i n i n g management of t h e i r c h r o n i c a l l y i l l c h i l d ' s p e r i o d i c however, the s t u d i e s useful
the
f o r comparison purposes.
Most of the
the
studies
children involved
deal with and
the to
participated
in
study.
Vaughan (1957) conducted one at e v a l u a t i n g
are
w i l l be used
and:, r e i n f o r c e the p e r c e p t i o n s J o f the p a r e n t s who
current
the
impact of p r o v i d i n g
during h o s p i t a l i z a t i o n .
Forty
of the
e a r l y experiments aimed
children with s p e c i a l information
c h i l d r e n between the ages of two
admitted to h o s p i t a l f o r strabismus r e p a i r and who izations, participated
i n the
study.
w i t h p a r e n t s to a s s e s s and
p o s t - h o s p i t a l i z a t i o n by p a r e n t s . e x p e r i m e n t a l group was
an
no
intervention
interview
r e s e a r c h e r found a lower i n c i d e n c e
the
c h i l d r e n who
may
have been r e l a t e d
had
received
on
the
f o r the first,
to the presence of a c a r i n g t h i s study was
parent p a r t i c i p a t i o n i n h o s p i t a l was
20
as and
children
t h i r d and
fifth
address c o n c e r n s .
of b e h a v i o u r a l d i s t u r b a n c e among
special information.
to the g i v i n g of i n f o r m a t i o n as
interview
by nurses
h o s p i t a l days which attempted to g i v e them i n f o r m a t i o n and The
report
c h i l d ' s b e h a v i o u r , as w e l l
children post-operatively The
nine,
previous h o s p i t a l -
a pre-hospitalization
c l a s s i f y the
b e h a v i o u r a l o b s e r v a t i o n s of the
had
and
L i t t l e i s e x p l a i n e d i n the
about the methodology, which i n c l u d e d
i n the
hospitalizations;
of h o s p i t a l i z a t i o n f o r " u s u a l l y w e l l " c h i l d r e n
e f f e c t s of h o s p i t a l i z a t i o n on explain
to^parents'
However, the adult
rather
results
than s o l e l y
conducted a t a time when
very r e s t r i c t e d .
Notwithstanding,
92 it
seems t h a t the support of a c a r i n g a d u l t , even one who was u n f a m i l i a r
to
the c h i l d , p o s i t i v e l y i n f l u e n c e d the c h i l d r e n ' s responses
ization. in
to h o s p i t a l -
T h i s s u b s t a n t i a t e s the c o n v i c t i o n o f the p a r e n t s who p a r t i c i p a t e d
the c u r r e n t study t h a t t h e i r presence p o s i t i v e l y i n f l u e n c e d the
children's experiences. That h e a l t h p r o f e s s i o n a l s o f t e n d i s r e g a r d the c h i l d ' s
illness
e x p e r i e n c e i s supported by the q u a l i t a t i v e d a t a p r e s e n t e d from the i n t e r views w i t h the c h i l d r e n : U n f a m i l i a r and f r i g h t e n i n g s u r r o u n d i n g s and s i g h t s , and unsympathetic o r t h o u g h t l e s s s t a f f , i n c r e a s e the s t r e s s f o r the c h i l d ; and i t was i n t e r e s t i n g t h a t i n s p i t e o f h a v i n g an e x p e r i e n c e d and u n d e r s t a n d i n g s t a f f , much n e e d l e s s a n x i e t y was caused by sudden changes i n the ward r o u t i n e , unexpected i n v e s t i g a t i o n s , and a g e n e r a l f a i l u r e t o t e l l the c h i l d r e n what was happening. There was a tendency to t r e a t c h i l d r e n w i t h l i t t l e r e g a r d f o r t h e i r p e r s o n a l p r i v a c y , and t o f o r g e t t h a t they may be aware o f what i s going on around them, and wish to understand i t (Vaughan, 1957, p.1120). The d a t a r e v e a l t h a t c h i l d r e n do need someone who i s aware and concerned about
t h e i r i l l n e s s e x p e r i e n c e t o mediate t h e i r i n t e r a c t i o n s i n h o s p i t a l .
The p a r e n t s who p a r t i c i p a t e d i n t h e c u r r e n t study emphasized t h a t h e a l t h p r o f e s s i o n a l s o f t e n do n o t a p p r e c i a t e the f a m i l y ' s i l l n e s s in
hospital.
is
apparent
experience
T h i s i s r e i n f o r c e d by t h e q u o t a t i o n p r e s e n t e d above.
It
that what h e a l t h p r o f e s s i o n a l s c o n s i d e r t o be normal r o u t i n e
may be v e r y d i s r u p t i n g to b o t h the h o s p i t a l i z e d c h i l d B r a i n and Maclay
(1968) were concerned
and h i s / h e r p a r e n t s .
t h a t many of the g e n e r a l l y
agreed upon a s p e c t s o f the h o s p i t a l i z a t i o n o f c h i l d r e n had n o t been s y s t e m a t i c a l l y examined and s u b s t a n t i a t e d . for
the purpose
responses
of d e t e r m i n i n g the impact
to h o s p i t a l i z a t i o n .
participated
As such, they designed a study
o f m a t e r n a l presence on c h i l d r e n ' s
One hundred and n i n e t y seven
children
i n t h i s w e l l c o n t r o l l e d study, w i t h the e x p e r i m e n t a l group
comprised
of 101
mothers and
c h i l d r e n admitted
to h o s p i t a l accompanied by
the c o n t r o l group of 96 c h i l d r e n admitted
of e l e c t i v e s u r g e r y but w i t h o u t
t h e i r mothers.
The
f o r the same type
researchers
t h a t the c h i l d r e n i n the e x p e r i m e n t a l group e x h i b i t e d a b e t t e r adjustment
However, the c r i t e r i a used
ment were not c l e a r l y subjectively derived.
significantly
i n the assessment of a d j u s t -
s t a t e d i n the r e p o r t thus making the f i n d i n g appear I t i s i n t e r e s t i n g to note t h a t the c h i l d r e n of
had a v e r y s t r o n g d e s i r e to accompany t h e i r c h i l d r e n
h o s p i t a l but were unable disturbance low
t o do so had
a v e r y h i g h r a t e of
(46.7%)when the a t t i t u d e of the mother was
into
emotional
(85.7%); whereas the i n c i d e n c e of d i s t u r b a n c e was
T h i s suggested
more p a s s i v e
relatively (p.279).
to the r e s e a r c h e r s t h a t mothers are o f t e n the b e s t
of whether or not t h e i r c h i l d r e n need them i n h o s p i t a l . who
found
to h o s p i t a l i z a t i o n when compared to the c h i l d r e n i n
the c o n t r o l group.
mothers who
their
participated
The
judges
parents
i n the c u r r e n t study, as w e l l as the study by Hayes
M o r r i s et a l . (1982), argued
s t r o n g l y t h a t they know t h e i r c h i l d r e n b e s t
which i s r e i n f o r c e d by B r a i n and Maclay's (1968) f i n d i n g s . t h a t p a r e n t s have a unique, h o l i s t i c view of t h e i r c h i l d ' s w i t h i l l n e s s by v i r t u e of l i v i n g
the e x p e r i e n c e w i t h them.
p r o f e s s i o n a l s can o n l y understand
must be kept i n mind when examining The
experience Health
t h i s e x p e r i e n c e by a s k i n g the p a r e n t s .
C e r t a i n c o n s t r a i n t s , h i g h l i g h t e d by the two
existing research l i t e r a t u r e .
I t i s evident
reports just
cited,
the p r e s e n t study i n the context of first
i s that there i s very
little
r e s e a r c h t h a t can be d i r e c t l y compared to the f i n d i n g s of the c u r r e n t study due
to d i f f e r e n c e s i n r e s e a r c h methodologies.
The
f a m i l i e s w i t h u s u a l l y w e l l c h i l d r e n have a v e r y d i f f e r e n t
second
i s that
experiential
X
94
background than do f a m i l i e s w i t h a c h r o n i c a l l y i l l
c h i l d which means t h a t
the f i n d i n g s r e l a t e d t o one group cannot be assumed to h o l d t r u e f o r the other. P a r e n t s ' h o l i s t i c p e r s p e c t i v e s of t h e i r c h i l d r e n ' s c h r o n i c i l l n e s s e x p e r i e n c e s g i v e them i n s i g h t i n t o the c h i l d r e n ' s responses hospitalization.
T h i s i s s u b s t a n t i a t e d by T e s l e r and Savedra's (1981)
study i n which they observed s u r g i c a l procedure.
33 s c h o o l age c h i l d r e n h o s p i t a l i z e d
They determined
fora
that c h i l d r e n use a v a r i e t y o f c o p i n g
s t r a t e g i e s and t h a t no two c h i l d r e n a r e a l i k e i n terms of s p e c i f i c The r e s e a r c h e r s u t i l i z e d ren's b e h a v i o u r s
responses.
a p r o t o c o l f o r c o d i n g and d e s c r i b i n g the c h i l d -
that" was u n p u b l i s h e d , however adequately s u b s t a n t i a t e d
t h e i r f i n d i n g s w i t h c l e a r examples o f b e h a v i o u r . concluded
during
T e s l e r and Savedra
(1981)
t h a t p a r e n t s a r e a good s o u r c e o f i n f o r m a t i o n r e g a r d i n g t h e i r
c h i l d ' s u s u a l coping s t r a t e g i e s and thus may be h e l p f u l t o n u r s e s ' u n d e r s t a n d i n g o f the meaning o f the c h i l d ' s b e h a v i o u r i s r e l e v a n t to p a r e n t s of a c h r o n i c a l l y i l l
child
of t h e i r c h i l d ' s b e h a v i o u r i n h o s p i t a l a r e founded
i n hospital.
This
i n that t h e i r perceptions on an ongoing
w i t h i l l n e s s which may i n c o r p o r a t e r e p e a t e d h o s p i t a l i z a t i o n s .
experience
Again,
t h i s r e l a t e s to the f i n d i n g of the c u r r e n t study t h a t p a r e n t s know t h e i r c h i l d r e n b e s t as w e l l as evidence t h a t g e n e r a l s t r a t e g i e s a r e developed f o r c o p i n g w i t h i l l n e s s t h a t a r e m o d i f i e d w i t h i n the h o s p i t a l The p a r e n t s a r e aware o f the c h r o n i c a l l y i l l
setting.
child's usual strategies
and a l s o have a background of h o s p i t a l i z a t i o n e x p e r i e n c e to s u b s t a n t i a t e t h e i r judgement. Hill
(1978) i n t e r v i e w e d 18 mothers o f h o s p i t a l i z e d
regarding t h e i r d e s i r e to p a r t i c i p a t e i n t h e i r c h i l d ' s care.
children I t should
be noted t h a t the c h i l d r e n were not handicapped i n any way children.
seriously i l l ,
unconscious or
so the f i n d i n g s r e l a t e to mothers of u s u a l l y w e l l
A s t r u c t u r e d i n t e r v i e w guide was
used and
i t is interesting
to note t h a t the mothers were asked to respond r e g a r d i n g p a r t i c i p a t e i n a r e a s of c a r e t h a t d i d not t h a t time and may The
t h e r a p e u t i c measures.
staff.
team.
they would l i k e the support o f
nursing
is in hospital
expected, the amount of p a r t i c i p a t i o n and
areas of p a r t i c i p a t i o n d e s i r e d by individual. parents'
specific
study
d e s i r e to a c t i v e l y p a r t i c i p a t e i n t h e i r children.'s c a r e
must be q u e s t i o n e d by h e a l t h p r o f e s s i o n a l s b e f o r e can be developed.
t h a t many p a r e n t s are w i l l i n g t r a d i t i o n a l l y considered i n the c u r r e n t
Hill's
study e x p l a i n e d
a mutually
satis-
(1978) d a t a a l s o suggest
The
p a r e n t s who
t h a t they o f t e n knew of ways to
T h i s might e x p l a i n why
are
participated do
the maximum amount of c o o p e r a t i o n
c h i l d w i t h a minimum of d i s c o m f o r t .
that
varies
to do a wide v a r i e t y of tasks which
the realm of n u r s e s .
procedures which would e l i c i t
in H i l l ' s
the
the mothers v a r i e d from i n d i v i d u a l to
T h i s f u r t h e r s u p p o r t s the f i n d i n g of the c u r r e n t
f a c t o r y p l a n of care
living
study t h a t many
a c t i v e p a r t i c i p a n t s when t h e i r c h i l d
As
their
Many mothers a l s o i n d i c a t e d t h a t , when p a r -
that mothers tend to view themselves as competent members of
h e a l t h care
and
feedings.
comfort measures, a c t i v i t i e s of d a i l y
T h i s r e i n f o r c e s the f i n d i n g s of the p r e s e n t
mothers w i s h to be
to
at
d a t a suggest t h a t mothers w i s h to p a r t i c i p a t e i n a l l a s p e c t s of
t i c i p a t i n g i n t h e i r c h i l d ' s care,
and
p e r t a i n to t h e i r c h i l d
have been u n f a m i l i a r , such as gastrostomy
c h i l d ' s care which i n c l u d e d and
willingness
from
the
the mothers
(1978) study expressed w i l l i n g n e s s to p a r t i c i p a t e i n t a s k s ,
such as gastrostomy f e e d i n g s , which r e q u i r e a d d i t i o n a l t r a i n i n g .
96 Another 1953) attempted
of the v e r y e a r l y e x p l o r a t o r y s t u d i e s (Prugh e t a l . ,
to c l a r i f y
the n a t u r e of the e f f e c t s of a b r i e f r a t h e r
than prolonged h o s p i t a l i z a . t i o n upon c h i l d r e n and p a r e n t s . was a comprehensive experiment
Although
this
i n v o l v i n g 100 c h i l d r e n , many a s p e c t s o f
d a t a c o l l e c t i o n and a n a l y s i s a r e u n c l e a r i n the r e p o r t and appear uns y s t e m a t i c , t h e r e f o r e the f i n d i n g s should be viewed The c o n t r o l group of f i f t y management
with
reservation.
c h i l d r e n were i n h o s p i t a l under
traditional
t e c h n i q u e s which meant a p a r e n t a l v i s i t i n g p e r i o d of two hours
per week, w h i l e p a r e n t s of the e x p e r i m e n t a l group had u n r e s t r i c t e d ing
p r i v i l e g e s and t h e i r involvement
i n c a r e was encouraged.
p e r c e n t of the c h i l d r e n i n the unsupported
group e x h i b i t e d
visit-
Ninety-two
behaviour
i n d i c a t i n g s i g n i f i c a n t d i f f i c u l t i e s i n a d a p t a t i o n to h o s p i t a l as opposed to
68% of the e x p e r i m e n t a l group.
However, somewhat
s u r p r i s i n g l y , the
frequency of p a r e n t a l v i s i t s was not found to c o r r e l a t e w i t h the c h i l d ' s adaptation.
T h i s l e d the r e s e a r c h e r s to conclude t h a t the e f f e c t i n the
e x p e r i m e n t a l group was due to a combination
of i n t e r a c t i n g f a c t o r s and
t h a t the most important v a r i a b l e i n f l u e n c i n g the degree
and n a t u r e of
trauma the c h i l d e x p e r i e n c e s from h o s p i t a l i z a t i o n seems to be the q u a l i t y of
the c h i l d ' s r e l a t i o n s h i p w i t h h i s o r h e r p a r e n t s .
that when p a r e n t s a r e a l l o w e d to determine
The d a t a
t h e i r own v i s i t i n g
suggest practices,
they a r e a b l e t o support t h e i r c h i l d r e n such t h a t a d a p t a t i o n to h o s p i t a l ization i s facilitated.
A g a i n , t h i s s u p p o r t s the n o t i o n p r e s e n t e d i n the
c u r r e n t r e p o r t t h a t p a r e n t s a r e aware o f t h e i r c h i l d r e n ' s needs and a r e a b l e to e f f e c t i v e l y
i n t e r v e n e i n r e l a t i o n to the needs.
s u b s t a n t i a t e s the p e r c e p t i o n s of p a r e n t s who p a r t i c i p a t e d study t h a t
The d a t a a l s o i n the c u r r e n t
t h e i r need t o take time away from the h o s p i t a l i z e d
was not a major d i f f i c u l t y
f o r them.
I t i s apparent
children
that parents
develop
97 a visiting
schedule which accounts
c h i l d r e n ' s needs and attempts
f o r t h e i r needs as w e l l as
the
to b a l a n c e them.
The p a r e n t s i n Burton's
(1975) study saw
t h e i r c h i l d r e n need-
i n g constancy and r e a s s u r a n c e d u r i n g times of h o s p i t a l i z a t i o n .
This i s
congruent w i t h a f i n d i n g of the p r e s e n t study t h a t some p a r e n t s p e r c e i v e t h e i r r o l e i n managing t h e i r c h i l d ' s e x p e r i e n c e i n h o s p i t a l to r e s t p r o v i d i n g emotional support.
F u r t h e r , the p a r e n t s who
the c u r r e n t study were v e r y concerned to t h e i r c h i l d r e n . prime f o c u s was
p a r t i c i p a t e d i n ':
providing consistent
R e g a r d l e s s o f the p a t t e r n of c o n t r o l used,
support
the p a r e n t s '
on b e i n g dependable f o r t h e i r c h i l d p a r t i c u l a r l y when the
e x p e r i e n c e became d i f f i c u l t . (1975) were concerned was
about
on
about
In a d d i t i o n , the p a r e n t s i n Burton's
study
s i t u a t i o n s where the c h i l d ' s normal r o u t i n e
a l t e r e d but f e l t unable t o i n t e r v e n e .
A g a i n , t h i s s u p p o r t s the c u r r e n t
f i n d i n g t h a t p a r e n t s tend to p e r c e i v e two ways of managing the c h i l d ' s i l l n e s s e x p e r i e n c e i n h o s p i t a l , which a r e : t h a t f o c u s e s on e m o t i o n a l f a c t o r s , and, c o n t r o l l i n g environmental normal r o u t i n e s .
a passive p a t t e r n of c o n t r o l
an a c t i v e p a t t e r n t h a t i n v o l v e s
f a c t o r s w i t h a focus on m a i n t a i n i n g the
child's
Canam (1980) a l s o found t h a t , f o r some p a r e n t s , a c t i v e
p a r t i c i p a t i o n i n t h e i r c h i l d ' s h o s p i t a l i z a t i o n gave them a measure of c o n t r o l over the e x p e r i e n c e .
In a d d i t i o n , some p a r e n t s r e p o r t e d not
s h a r i n g t h e i r f e e l i n g s w i t h the i l l
c h i l d because they f e l t
c o u l d not cope w i t h t h a t i n f o r m a t i o n .
the
child
T h i s i s s i m i l a r to the s t r a t e g y ,
u t i l i z e d by p a r e n t s i n the c u r r e n t study, o f masking t h e i r t r u e a f f e c t i n o r d e r to p r o v i d e p o s i t i v e e m o t i o n a l support f o r the i l l McCollum and Gibson
(1970) found t h a t the p a r e n t s who
child.
avoided
i n f o r m a t i o n to t h e i r s i c k c h i l d were p r o t e c t i n g themselves
giving
r a t h e r than
s h i e l d i n g the c h i l d .
A p p a r e n t l y , the p a r e n t s were a f r a i d o f b e i n g
unable t o answer t h e i r c h i l d ' s q u e s t i o n s .
T h i s s e r v e s to i l l u s t r a t e
the complexity o f f a c t o r s i n f l u e n c i n g p a r e n t a l responses and t h a t the meaning of the response
i s likely
to v a r y from p a r e n t t o p a r e n t . , A g a i n ,
t h i s r e i n f o r c e s a p o i n t made i n the c u r r e n t study, t h a t h e a l t h p r o f e s s i o n a l s cannot
assume to understand
chronic i l l n e s s .
parents' perspectives regarding
Only by a s k i n g the p a r e n t s f o r t h e i r p e r c e p t i o n s
can u n d e r s t a n d i n g be g a i n e d .
To summarize the s t u d i e s c i t e d ,
the d a t a
show t h a t e m o t i o n a l support i s something a l l p a r e n t s can g i v e t o t h e i r hospitalized, chronically i l l ment i s o f t e n more d i f f i c u l t
c h i l d r e n whereas m a n i p u l a t i n g the e n v i r o n to a c c o m p l i s h .
A l a r g e p r o p o r t i o n (44%) of t h e p a r e n t s Iri Burton's not v i s i t
t h e i r c h i l d i n h o s p i t a l on a d a i l y b a s i s .
study d i d
T h i s may have been
the r e f l e c t i o n o f an atmosphere that d i d n o t encourage parent
par-
t i c i p a t i o n and c o u l d e x p l a i n why so many p a r e n t s had d i f f i c u l t y w i t h i: t a k i n g a c t i v e c o n t r o l i n the s i t u a t i o n .
I t i s apparent
that
changing
h e a l t h c a r e a t t i t u d e s a r e now r e s u l t i n g i n g r e a t e r encouragement o f p a r e n t s who w i s h t o p a r t i c i p a t e i n t h e i r h o s p i t a l i z e d , c h i l d ' s c a r e and may e x p l a i n , why most o f the p a r e n t s i n the c u r r e n t study f e l t take a more a c t i v e r o l e i n c o n t r o l l i n g t h e i r c h i l d r e n ' s in
able to
experiences
hospital. S e v e r a l r e s e a r c h e r s have found t h a t p a r e n t s a r e v e r y
about t r e a t i n g t h e i r c h r o n i c a l l y i l l Canam, 1980; Hewitt e t a l . ,
c h i l d normally
concerned
(Anderson, 1981;
1970; K i n g , 1981; K r u l i k , 1980) and t h a t
h o s p i t a l i z a t i o n n e g a t i v e l y i n f l u e n c e s maintenance o f normal r o u t i n e (Burton, 1975; Prugh e t a l . ,
1953).
T h i s i s congruent w i t h the f i n d i n g s
99 of the c u r r e n t study and i n d i c a t e s t h a t n o r m a l i z a t i o n concern f o r p a r e n t s uniquely
of a c h r o n i c a l l y i l l
associated with h o s p i t a l i z a t i o n .
ethnographic d a t a from f o u r f a m i l i e s w i t h being
cared
f o r i n the home.
i s an ongoing
c h i l d r a t h e r than a problem Anderson (1981) c o l l e c t e d a chronically i l l
child
The method o f p a r t i c i p a n t o b s e r v a t i o n
was used t o e x p l o r e how the c h i l d ' s s i c k n e s s was understood and desc r i b e d by the p a r e n t s
w i t h i n the context
Anderson found t h a t the p a r e n t s
o f everyday s o c i a l i n t e r a c t i o n s .
understood the m e d i c a l i m p l i c a t i o n s o f
t h e i r c h i l d ' s i l l n e s s and knew t h a t the c h i l d was not normal b u t s e t those c o n s i d e r a t i o n s
a s i d e i n an attempt t o n o r m a l i z e
L i k e B u r t o n (1975) the r e s e a r c h e r parents
hoped t o a c h i e v e
occurred.
the e x p e r i e n c e .
found a d i s p a r i t y between what the
i n terms o f c h i l d r e a r i n g and what a c t u a l l y
I t appears t h a t the d i f f e r e n c e i s a r e s u l t o f v a l u i n g
normalization
on the one hand and acknowledging the r e s t r i c t i o n s
are d i c t a t e d by t h e i r u n d e r s t a n d i n g of s i c k n e s s on the o t h e r . explained
t h a t w i t h i n the context
of chronic childhood
becomes s e m a n t i c a l l y d e f i n e d which a l l o w s but
does n o t permit the c h i l d
"normal"
of differences
t o be "normal" i n the everyday sense.
T h i s i s s i m i l a r t o the f i n d i n g of the c u r r e n t becomes s e m a n t i c a l l y
Anderson
illness,
f o r minimization
that
study t h a t h o s p i t a l i z a t i o n
d e f i n e d as a "normal" f a c e t of r o u t i n e j u s t as
c h r o n i c i l l n e s s becomes a "normal" p a r t o f day-to-day l i v i n g .
The
semantic d e f i n i t i o n s f a c i l i t a t e the adjustments t h a t a r e r e q u i r e d by the c h i l d ' s i l l n e s s . Prugh e t a l . (1953) found t h a t the p a r e n t s
of u s u a l l y w e l l
c h i l d r e n f r e q u e n t l y e x h i b i t e d "marked ambivalence i n the f a c e o f behavioural
r e g r e s s i o n on the p a r t o f the c h i l d , e i t h e r d u r i n g o r
100
following hospitalization"
(p.98).
The p a r e n t s who p a r t i c i p a t e d i n
the c u r r e n t study were a l s o ambivalent
about t h e i r c h i l d r e n ' s b e h a v i o u r a l
r e g r e s s i o n i n h o s p i t a l which they viewed i n terms o f d i s r u p t e d "normal" behaviour
as a r e s u l t of a l t e r e d r o u t i n e .
They were concerned
m a i n t a i n i n g the c h i l d ' s u s u a l b e h a v i o u r but had d i f f i c u l t y
about
s e t t i n g the
u s u a l l i m i t s due t o the c o n s t r a i n t s o f the s e t t i n g as w e l l as u n c e r t a i n t y about what was r e a s o n a b l e to expect when the c h i l d was s i c k . apparent
t h a t these p a r e n t s p e r c e i v e t h e i r c h i l d r e n ' s i l l n e s s s t a t u s
to be a l t e r e d d u r i n g times of h o s p i t a l i z a t i o n . parent w i t h a s i c k c h i l d ,
setting limits.
Thus, j u s t l i k e any
the p a r e n t s had l o s t some o f t h e i r u s u a l
landmarks r e g a r d i n g t h e i r c h i l d r e n ' s b e h a v i o u r
and were unsure about
However, i t i s a l s o e v i d e n t t h a t t r y i n g t o a t t a i n .'some
s o r t of a normal l i f e
f o r t h e i r c h i l d r e n i s a much g r e a t e r i s s u e f o r
parents of a c h r o n i c a l l y i l l child.
child
than f o r p a r e n t s o f a u s u a l l y w e l l
T h i s i s because of the l i m i t a t i o n s imposed by long-term
as w e l l as the d i s r u p t i o n o f repeated Krulik
illness
hospitalizations.
(1980) i n t e r v i e w e d mothers of 20 c h i l d r e n w i t h c h r o n i c
life-threatening illnesses.
The r e s e a r c h e r used
an e x t e n s i v e s t r u c t u r e d
i n t e r v i e w schedule and r e p o r t e d the t a c t i c s p e r c e i v e d as b e i n g f u l i n r e d u c i n g t h e c h i l d ' s f e e l i n g of b e i n g d i f f e r e n t . explicit
It is
i n the r e p o r t , i t i s apparent
success-
Although not
t h a t n o r m a l i z a t i o n was n o t b e i n g
d e f i n e d i n terms o f common sense usage i n t h a t the aim was n o t t o t r e a t the c h i l d "as normal."
I n s t e a d , t h e mother's s t r a t e g i e s were geared
a t two t a r -
g e t s ; one toward s t r e n g t h e n i n g the r e s o u r c e s and coping a b i l i t i e s of the child
101 and
the second towards a l t e r i n g the environment t o compensate and a c c e p t
the c h i l d ' 1
(p.575).
These a r e s i m i l a r to the two t a r g e t s b e h i n d the
s t r a t e g i e s used by p a r e n t s i n the p r e s e n t i l l n e s s experience i n h o s p i t a l . passive
emotional support t o s t r e n g t h e n the
whereas the a c t i v e c o n t r o l l i n g s t r a t e g i e s were aimed
at a l t e r i n g the environment. using
The s t r a t e g i e s i n v o l v e d i n r e l a t i o n to
c o n t r o l were aimed a t p r o v i d i n g
c h i l d ' s own r e s o u r c e s
study t o manage the c h i l d ' s
Normalization
was one o f the purposes f o r
these s t r a t e g i e s i n h o s p i t a l . Hewitt e t a l . (1970) found that mothers o f handicapped c h i l d r e n
follow c h i l d rearing patterns
s i m i l a r t o those used by mothers o f w e l l
c h i l d r e n but make common sense m o d i f i c a t i o n s of the c h i l d ' s i l l n e s s .
i n response t o the r e a l i t i e s
The mothers i n the study " s a i d many times they
t r y t o b r i n g up t h e i r handicapped c h i l d r e n i n the same way as the normal c h i l d r e n as much as they p o s s i b l y c a n " (p.87). the f i n d i n g of t h e p r e s e n t a c h i e v e the g r e a t e s t
T h i s i s congruent w i t h
study t h a t p a r e n t s w i s h t h e i r c h i l d r e n t o
degree o f normal f u n c t i o n i n g p o s s i b l e w i t h i n the
c o n s t r a i n t s of t h e i r s i t u a t i o n .
The p a r t i c i p a n t s i n t h i s study
explained
t h a t t r y i n g t o a c h i e v e and m a i n t a i n the normal m i l e s t o n e s i n t h e i r c h i l d r e n ' s development i s a s t r u g g l e and t h a t s e t b a c k s a r e always experienced a f t e r i n c i d e n t s of h o s p i t a l i z a t i o n . None o f the s t u d i e s addressed the f i n d i n g p r e s e n t e d i n the current report
t h a t p a r e n t s o c c a s i o n a l l y wish to g i v e up some o f the r e s p o n s i b i l i t y
f o r managing t h e i r c h i l d r e n ' s c h r o n i c
i l l n e s s and so t e m p o r a r i l y
c o n t r o l t o h e a l t h p r o f e s s i o n a l s i n the h o s p i t a l s e t t i n g . i s understandable given focus
relinquish
This lack of data
that the s t u d i e s p e r t a i n i n g t o h o s p i t a l i z a t i o n
on u s u a l l y w e l l c h i l d r e n .
However, Hewitt e t a l . (1970) found
that
102 p a r e n t s d e s i r e breaks from t h e i r c h r o n i c a l l y i l l unable t o f i n d someone who even among f a m i l y and
c h i l d r e n but are o f t e n
i s competent and w i l l i n g
close friends.
the p a r e n t s ' need f o r r e l i e f
to c a r e f o r the
T h i s suggested to the w r i t e r
child, that
from the r e s p o n s i b i l i t y of managing the
c h i l d ' s i l l n e s s on a d a i l y b a s i s may
be p e r c e i v e d as g r e a t e r than the child's
heed f o r p a r e n t a l support d u r i n g h o s p i t a l i z a t i o n which would e x p l a i n some p a r e n t s absent themselves
from the h o s p i t a l s e t t i n g .
words, the "time o u t s " taken by some p a r e n t s may o f c o p i n g w i t h h o s p i t a l i z a t i o n but may
be due
why
In o t h e r
not simply/be a f a c t o r
to the e m o t i o n a l o v e r l o a d
of h o s p i t a l i z a t i o n i n a d d i t i o n t o long-term management of i l l n e s s w i t h o u t breaks from
responsibility.
M o d i f y i n g the E m o t i o n a l Impact of H o s p i t a l i z a t i o n f o r S e l f I t i s apparent from the d a t a i n the p r e s e n t study t h a t t i o n of a c h r o n i c a l l y i l l parents.
hospitaliza-
c h i l d has a s i g n i f i c a n t e m o t i o n a l impact on the
The accounts i n d i c a t e t h a t p a r e n t s a r e s e l f aware and s e l f
i n terms o f the s t r a t e g i e s they use t o cope w i t h the e m o t i o n a l l o a d ted w i t h t h e i r c h i l d r e n ' s h o s p i t a l i z a t i o n s .
reliant associa-
There i s s c a n t r e s e a r c h literature
p e r t a i n i n g to the e m o t i o n a l impact of a c h i l d ' s h o s p i t a l i z a t i o n on the p a r e n t s , as the primary f o c u s of i n t e r e s t seems to have been the e f f e c t s on the c h i l d .
However, Hewitt et a l . (1970), i n d i s c u s s i n g the impact
of
a long-term i l l n e s s e x p e r i e n c e , r e c o g n i z e d t h a t " i t i s i n the c o n t e x t of h e r own
f e e l i n g s and her own
f a m i l y c i r c u m s t a n c e s t h a t the mother's
response to the f a c t t h a t she has a handicapped (p.196). a unique
c h i l d must be
unique"
The r e s e a r c h e r s a l s o concluded that no s p e c i f i c handicap b r i n g s s e t of problems t o the f a m i l y and
t h a t the manner i n which the
103 f a m i l y copes does n o t d i f f e r s i g n i f i c a n t l y from p a t t e r n s e v i d e n t i n families with usually w e l l c h i l d r e n .
T h i s supports the f i n d i n g s of t h e
c u r r e n t study t h a t each p a r e n t ' s u n d e r s t a n d i n g and e x p l a n a t i o n o f h i s / h e r c h i l d ' s i l l n e s s i s unique, s o c i o c u l t u r a l l y d e r i v e d , and s e r v e s t o guide health behaviour. families f a l l icity. in
However, the i l l n e s s problems e x p e r i e n c e d by these
i n t o common c a t e g o r i e s w i t h the shared bond b e i n g
chron-
F u r t h e r , the p r e s e n t study found common s t r a t e g i e s used by p a r e n t s
c o p i n g w i t h t h e e m o t i o n a l impact
of h a v i n g a c h i l d i n h o s p i t a l .
Con-
gruent w i t h t h e f i n d i n g s o f Hewitt e t a l . (1970), t h e s t r a t e g i e s appear to
be those used
situations.
i n everyday
l i f e management o f e m o t i o n a l l y d i f f i c u l t
The p a r t i c i p a n t s i n the c u r r e n t study e x p l a i n e d t h a t the
s t r a t e g i e s used i n h o s p i t a l a r e c o n s i s t e n t w i t h t h e i r s t r a t e g i e s f o r managing t h e c h i l d r e n ' s i l l n e s s e s i n the home. Canam (1980) and P.rugh e t a l . (1953) found t h a t a c t i v e
partici-
p a t i o n i n t h e i r c h i l d r e n ' s c a r e was a u s e f u l coping mechanism f o r p a r e n t s in
managing t h e i r own a n x i e t i e s and f e a r s as w e l l as those b e l o n g i n g to
the c h i l d r e n .
T h i s was e v i d e n t i n t h e accounts o f t h e p a r e n t s who p a r -
t i c i p a t e d i n the c u r r e n t study; however, t h e i r e x p l a n a t i o n s c o n c e n t r a t e d on b e n e f i t s t o the c h i l d r e n r a t h e r than b e n e f i t s to themselves.
The d a t a
suggest t h a t whatever the p a r e n t s c o u l d do, was done f o r t h e b e n e f i t o f t h e c h i l d , b u t a l s o allowed them some r e l i e f o f a n x i e t y i n t h a t they were a b l e to
f o c u s t h e i r concerns and a c h i e v e some p o s i t i v e The mothers i n Burton's
difficult
study
(1975)
results.
found
hospitalization
to manage when they were f o r c e d t o choose between b e i n g w i t h
the i l l c h i l d and b e i n g home w i t h t h e w e l l s i b l i n g s ; however, the r e p o r t p r o v i d e d no f u r t h e r d i s c u s s i o n o f the d e c i s i o n s made by the mothers t o
104 r e s o l v e the i s s u e .
T h i s was
a dilemma t h a t f a c e d most of the mothers i n
the c u r r e n t study which they r e s o l v e d by choosing and r e q u i r e d them to s e t a s i d e t h e i r concerns o r d e r to minimize (1975) f e l t
to be w i t h the i l l
f o r the w e l l s i b l i n g s i n
c o n f l i c t i n g _ e m o t i o n s . A few mothers i n Burton's
" t h a t by.-handing the c h i l d ' s c a r e over to the n u r s e ,
f a i l i n g i n t h e i r own
maternal
study
they were
d u t i e s " (p.107) which a p p a r e n t l y r e s u l t e d i n
resentment toward the n u r s i n g s t a f f . some p a r e n t s who
child
Burton's
(1975) d a t a suggest
that f o r
have assumed the day-to-day r e s p o n s i b i l i t y of managing
t h e i r c h i l d r e n ' s i l l n e s s e s , l a c k of p a r t i c i p a t i o n w h i l e t h e i r c h i l d r e n are i n h o s p i t a l has n e g a t i v e emotional e f f e c t s . mothers i n the p r e s e n t study and may
T h i s was
not expressed
r e l a t e to the f a c t t h a t
changing
trends i n p e d i a t r i c c a r e have c r e a t e d a more a c c e p t i n g a t t i t u d e p a r e n t s who Burton
wish
towards
to p a r t i c i p a t e i n t h e i r c h i l d r e n ' s c a r e i n h o s p i t a l .
(1975) concluded
that h o s p i t a l i z a t i o n of the c h i l d a c t i v a t e s or
r e - a c t i v a t e s p a r e n t a l f e a r s and f u l to p a r e n t s ' c o p i n g . sent study.
by
t h a t simply b e i n g w i t h the c h i l d i s h e l p -
A g a i n , t h i s i s congruent
w i t h f i n d i n g s of the p r e -
However, as p r e v i o u s l y d i s c u s s e d , the p a r e n t s who
i n the c u r r e n t study expressed children i n hospital.
some ambivalence
The accounts
participated
about b e i n g w i t h
predominantly
their
focused on p a r e n t s ' need
to be w i t h t h e i r c h i l d r e n but a l s o i l l u m i n a t e d p a r e n t s ' o c c a s i o n a l need to get away from the c h i l d r e n and
the h o s p i t a l .
These c o n f l i c t i n g needs seem
to be a f a c e t of the i l l n e s s e x p e r i e n c e r a t h e r than u n i q u e l y a s s o c i a t e d w i t h h o s p i t a l i z a t i o n but were not addressed
i n Burton's
S e v e r a l s t u d i e s d i s c u s s the a b i l i t y other parents. Gibson
(1975) r e p o r t .
of p a r e n t s to support
Canam (1980), Hayes M o r r i s e t a l . (1982), and McCollum
(1970) found
t h a t p a r e n t s c i t e b e i n g w i t h o t h e r p a r e n t s as
and
helpful
105 i n r e d u c i n g the sense o f i s o l a t i o n and i n a s s i s t i n g u n d e r s t a n d i n g i l l n e s s experience.
However, some r e s e a r c h e r s found
p a r e n t s was. o f minimal h e l p because the encounters shortcomings
of the
that being with other
h i g h l i g h t e d the p a r e n t s '
and maximized the s h a r i n g o f a n x i e t i e s
(Burton, 1975) o r gave
p a r e n t s i n s i g h t i n t o the f u t u r e p r o g r e s s o f t h e i r i l l n e s s e x p e r i e n c e which they found
d e p r e s s i n g (Lonsdale, 1978).
Canam (1980) was the o n l y r e s e a r c h e r
to d i f f e r e n t i a t e the f i n d i n g s between t a l k i n g t o p a r e n t s on an i n d i v i d u a l b a s i s and p a r t i c i p a t i o n i n parent groups.
The d a t a suggest
t h a t many p a r e n t s
do n o t f i n d groups h e l p f u l f o r the reasons d i s c u s s e d from the two p r e v i o u s ly cited
studies.
The l a c k of d i f f e r e n t i a t i o n between d a t a p e r t a i n i n g to
p a r e n t s ' p e r c e p t i o n s o f t h e i r c o n t a c t s w i t h o t h e r p a r e n t s on an i n d i v i d u a l v e r s u s group b a s i s may e x p l a i n the i n c o n s i s t e n t f i n d i n g s p r e s e n t e d literature.
The d a t a i n the p r e s e n t study g i v e evidence
i n the
that parents
f i n d c o n t a c t w i t h o t h e r p a r e n t s on an i n d i v i d u a l b a s i s to be h e l p f u l . F u r t h e r , the p a r e n t s s t a t e d t h a t they come t o g e t h e r n a t u r a l l y w i t h
other
p a r e n t s and t h a t a s s i s t a n c e from h e a l t h p r o f e s s i o n a l s i s n o t h e l p f u l . T h i s r e i n f o r c e s the f i n d i n g t h a t p a r e n t s a r e a b l e t o use t h e i r
resources
to b e s t meet t h e i r needs. Lonsdale
(1978) i n t e r v i e w e d p a r e n t s i n 60 f a m i l i e s h a v i n g a
handicapped c h i l d r e g a r d i n g f a m i l y l i f e w i t h a c h r o n i c a l l y i l l
child.
A s t r u c t u r e d q u e s t i o n n a i r e was used and the d a t a were p r e s e n t e d i n terms of d e s c r i p t i v e s t a t i s t i c s which were i l l u s t r a t e d w i t h v e r b a t i m q u o t a t i o n s . No i n f o r m a t i o n was p r e s e n t e d
i n the r e p o r t on t h e c o n s t r u c t i o n o r content
of the q u e s t i o n n a i r e . The
f i n d i n g s of Lonsdale
(1978), Burton
(1975) and Canam (1980)
are based on i n t e r v i e w s w i t h p a r e n t s who were managing t h e i r c h i l d ' s
illness
106 a t home.
Perhaps b e i n g w i t h o t h e r p a r e n t s , p a r t i c u l a r l y i n the group
s i t u a t i o n , p l a c e d too much f o c u s on the i l l n e s s at a time when i t was b e i n g managed w e l l i n terms of day-to-day l i f e . Lonsdale's
T h i s i s supported
(1978) f i n d i n g t h a t most p a r e n t s went out to be w i t h
p e o p l e " so they c o u l d f o r g e t the handicap The p a r e n t s who
participated
by
"normal
for awhile.
i n the p r e s e n t study
expressed
both a need to share t h e i r e x p e r i e n c e w i t h o t h e r p a r e n t s i n a s i m i l a r s i t u a t i o n and a need to get away, which i s c o n s i s t e n t w i t h (1978) d a t a . h e l p f u l and
Lonsdale's
I t i s e v i d e n t t h a t sometimes b e i n g w i t h o t h e r p a r e n t s i s sometimes i t i s n o t .
T h i s i s f u r t h e r s u b s t a n t i a t e d by
work of Hayes M o r r i s et a l . (1982) who
found
that being with
p a r e n t s sometimes adds t o the s t r e s s e s of h o s p i t a l i z a t i o n . s t a t e t h a t " s h a r i n g problems, f e a r s and
the
other These authors
concerns can become a major
source of s t r e s s because p a r e n t s become i n v o l v e d w i t h each o t h e r s ' c h i l d r e n and
t h e i r p r o g r e s s " (p.15).
Although
t h i s was
not expressed by
the
p a r e n t s i n the c u r r e n t study t h i s might e x p l a i n some p a r e n t s ' need f o r "time o u t s " from the h o s p i t a l
setting.
M i r r o r i n g has been d i s c u s s e d by K i k u c h i (1977) i n a paper w r i t t e n on the b a s i s of o b s e r v a t i o n s the author made w h i l e working as a c l i n i c a l nurse s p e c i a l i s t w i t h leukemic concept has not been s u b s t a n t i a t e d through a u s e f u l way
children.
this
s y s t e m a t i c r e s e a r c h i t seems
of e x p l a i n i n g a f a c e t of the r e l a t i o n s h i p t h a t o c c u r s
between p a r e n t s of s i c k c h i l d r e n i n h o s p i t a l .
K i k u c h i (1977) observed
t h a t c h i l d r e n get i n f o r m a t i o n by m i r r o r i n g themselves c h i l d r e n who
Although
against other
l o o k l i k e them and r e c e i v e s i m i l a r treatment.
The
t i o n seemed to enable the c h i l d r e n to cope more e f f e c t i v e l y w i t h
informatheir
i l l n e s s by r e d u c i n g u n c e r t a i n t y and p r o v i d i n g g u i d e l i n e s f o r managing difficult
situations.
Vaughan (1957) d e s c r i b e d the behaviour among
h o s p i t a l i z e d c h i l d r e n t h i s way:
"the c h i l d r e n were i n t e n s e l y aware of
t h e i r r e l a t i o n s h i p s w i t h each o t h e r , and compared themselves bravery"
(p.1119).
The p a r e n t s who
participated
u t i l i z e d a s i m i l a r m i r r o r i n g p r o c e s s f o r two t h e i r own situation.
sense of c o p i n g w e l l ; and, As L o n s d a l e
with a chronically i l l
study
to r e i n f o r c e
the s e r i o u s n e s s of
c h i l d i s the sense
(1975) f i n d i n g t h a t p a r e n t s a p p r e c i a t e
p a r t i c i p a n t s i n the p r e s e n t study were c a r e f u l i n c h o o s i n g o t h e r
Burton
s i t u a t i o n always seemed l e s s d i f f i c u l t
parents
to manage.
c h i l d r e n tend not to communicate
w i t h f r i e n d s and r e l a t i v e s f o r a v a r i e t y of reasons not t o worry f a m i l y and
such a s :
f r i e n d s ; r e a l i s t i c d i s c u s s i o n was
too uncomfortable;
and,
d i s c u s s i o n was
r e l a t i v e s d i d not r e a l l y understand
finding fully
desire
d i f f i c u l t because
the t h r e a t e n i n g a s p e c t s of the c h i l d ' s i l l n e s s made f r i e n d s and
the p a r e n t s who
The
(1975) and Canam (1980) were c o n s i s t e n t i n t h e i r
t h a t p a r e n t s of c h r o n i c a l l y i l l
life
t h a t i t c o u l d always be worse,
s i t u a t i o n a f t e r s e e i n g the s i t u a t i o n s of o t h e r p a r e n t s .
so t h a t t h e i r own
their
(1978) r e p o r t s , a common p a r e n t a l r e a c t i o n t o
which i s c o n s i s t e n t w i t h Burton's t h e i r own
i n the p r e s e n t
purposes:
to minimize
i n terms of
relatives
not h e l p f u l because f r i e n d s
the s i t u a t i o n .
p a r t i c i p a t e d i n the c u r r e n t study.
and
T h i s i s a l s o t r u e of F u r t h e r , the p a r t i c i - /
pants e x p l a i n e d t h a t because f r i e n d s and r e l a t i v e s o f t e n d i d not have f i r s t h a n d e x p e r i e n c e w i t h the i l l
c h i l d r e n t h e i r q u e s t i o n s were u n r e a l i s t i c
and a c t e d t o r e i n f o r c e the p a r e n t s ' f e a r s and found
t h i s u p s e t t i n g and
w i t h people who
so tended
frustrations.
to a v o i d d i s c u s s i n g t h e i r
The
parents
situation
were not i n touch w i t h the i l l n e s s e x p e r i e n c e .
This
may
a l s o e x p l a i n why p a r e n t s do not c i t e h e a l t h p r o f e s s i o n a l s as h e l p f u l to t a l k t o about t h e i r i l l n e s s e x p e r i e n c e s i n h o s p i t a l .
The d a t a
suggest
t h a t h e a l t h p r o f e s s i o n a l s , as a r e s u l t o f t h e i r focus on e x p l a i n i n g i l l ness i n terms o f d i s e a s e , a r e n o t i n touch w i t h the p a r e n t s ' experiences.
T h i s f i n d i n g has n o t been addressed
illness
by any o f the s t u d i e s
cited. Three s t u d i e s c i t e some form of "thought
b l o c k i n g " as a s t r a t e g y
u t i l i z e d by p a r e n t s f o r coping w i t h c h r o n i c c h i l d h o o d i l l n e s s 1975;
L o n s d a l e , 1978; McCollum & Gibson,
1970).
(Burton,
T h i s i s congruent
with
the s t r a t e g y of s e l e c t i v e i n a t t e n t i o n used by p a r e n t s i n the p r e s e n t study and f u r t h e r i n d i c a t e s t h a t t h i s c o p i n g p a t t e r n i s t y p i c a l of the e x p e r i e n c e r a t h e r than a unique
response
to a p a r t i c u l a r s i t u a t i o n .
Many
of the p a r t i c i p a n t s i n the c u r r e n t study e x p l a i n e d t h a t they manage the emotional l o a d a s s o c i a t e d w i t h t h e i r c h i l d r e n ' s h o s p i t a l i z a t i o n s by f o c u s i n g on immediate, known concerns not p e r t a i n t o the s i t u a t i o n a t hand.
and s e t t i n g a s i d e those t h a t do The p a r e n t s used hope t o m a i n t a i n
an o p t i m i s t i c o u t l o o k when i n f o r m a t i o n from t h e i r e x p e r i e n c e s from b i o - m e d i c a l i n f o r m a t i o n .
differed
F o r example, one mother whose baby began to
s m i l e took t h i s as a h o p e f u l s i g n t h a t the baby was not as s e v e r e l y b r a i n damaged as the p h y s i c i a n s i n d i c a t e d . coping behaviours
Burton
(1975) d e s c r i b e s p a r e n t s '
i n a way t h a t i s a p p l i c a b l e to the p a r t i c i p a n t s i n
the c u r r e n t s t u d y : Many p a r e n t s p r a c t i c e d an i n s t i n c t i v e form of thought b l o c k i n g e i t h e r d e l i b e r a t e l y s w i t c h i n g t h e i r thoughts to something more h o p e f u l , c o u n t i n g t h e i r b l e s s i n g s , o r g e t t i n g out and about u n t i l they f o r g o t ; D e s p i t e a l l the p e r s o n a l d i s t r e s s - a t t e n d a n t on t h e i r c h i l d ' s handicap, most p a r e n t s f u n c t i o n e f f e c t i v e l y , c u r b i n g t h e i r own n e g a t i v e emotions, m o b i l i s i n g hope and m a i n t a i n i n g a sense o f p e r s o n a l worth (p.226).
109
R e l a t i o n s h i p s i n the H o s p i t a l
Setting
The R e l a t i o n s h i p between Parent and S i c k C h i l d The c u r r e n t study found
t h a t an i n t e n s e bond e x i s t s between
p a r e n t s and t h e i r c h r o n i c a l l y i l l
c h i l d r e n which i s o f t e n i n t e n s i f i e d
d u r i n g times o f h o s p i t a l i z a t i o n .
T h i s bond p r o v i d e d the impetus f o r
p a r e n t s ' p r o t e c t i v e r o l e and thus, d i r e c t e d much o f t h e i r b e h a v i o u r i n hospital.
S e v e r a l s t u d i e s address
parent-ill child relationship et a l . ,
the e f f e c t s o f h o s p i t a l i z a t i o n on the
(Burton, 1975; Canam, 1980; Hayes M o r r i s
1982; MacCarthy e t a l . , 1962) and have f i n d i n g s which support
those o f the c u r r e n t study. Burton
(1975) found t h a t the days spent i n h o s p i t a l t o g e t h e r
" g e n e r a l l y had a v e r y p o s i t i v e e f f e c t on the r e l a t i o n s h i p o f parent and c h i l d , and consequent f e e l i n g s of c l o s e n e s s were a c c e n t u a t e d " T h i s i s supported by Anderson's study
(p.107).
(1981) which found i n t e n s e mother-
s i c k c h i l d i n t e r a c t i o n patterns i n f a m i l i e s having a c h r o n i c a l l y child.
ill
The i n t e n s i t y of the r e l a t i o n s h i p was evidenced by an account
which e x p l a i n e d t h a t a l l o f the mother's time and energy was devoted t o the i l l
c h i l d d u r i n g times of h o s p i t a l i z a t i o n which was a l s o expressed by
p a r t i c i p a n t s i n the c u r r e n t study.
Some of the p a r e n t s i n the c u r r e n t
study e x p l a i n e d t h a t d u r i n g h o s p i t a l i z a t i o n , with their i l l hospital.
they share a s p e c i a l world
c h i l d r e n t h a t i s q u i t e s e p a r a t e from t h e i r l i f e o u t s i d e the
Hayes M o r r i s e t a l . (1982) p o i n t o u t t h a t because t h i s
special
bond " i n f l u e n c e s the p a r e n t s ' p e r c e p t i o n s o f the h o s p i t a l i z a t i o n e x p e r i e n c e , an u n d e r s t a n d i n g o f the depth o f the p a r e n t s ' e m o t i o n a l t i e s w i t h
their
c h i l d r e n and p e r c e p t i o n s of t h e i r r o l e as p a r e n t s i s n e c e s s a r y i n o r d e r to a p p r e c i a t e the e x t e n t and n a t u r e o f a d a p t a t i o n s r e q u i r e d d u r i n g t h e i r
110 children's hospitalizations" The
(p.5)':
i n t e n s e p a r e n t - s i c k c h i l d r e l a t i o n s h i p s t h a t seem t y p i c a l
of f a m i l i e s w i t h a c h r o n i c a l l y i l l the c h i l d b e i n g v u l n e r a b l e .
Levy
c h i l d may
be r e l a t e d to a sense of
(1980) i n t e r v i e w e d
w a i t i n g areas of f i v e g e n e r a l p e d i a t r i c f a c i l i t i e s p e r s p e c t i v e s on how
and why
750
parents
"to explore
they chose the programs they use,
assessments of t h e i r c h i l d r e n ' s h e a l t h s t a t u s " (p.956).
The
used a s t r u c t u r e d guide comprised of open-ended q u e s t i o n s . a f t e r the i n i t i a l
56 i n t e r v i e w s t h a t v u l n e r a b i l i t y was
i n t h a t "some p a r e n t s or t h r e a t e n e d b i l i t y was parents
and
their
interviewer I t was
apparent concern
f e l t p a r t i c u l a r c h i l d r e n to be e s p e c i a l l y endangered
illness"
(p.956) so a q u e s t i o n which addressed
added. C a t e g o r i e s
Two
their
a recurrent
t h a t encompassed the range of
gave f o r t h e i r p e r c e p t i o n s were developed from the
accounts. and
by
i n the
hundred c h i l d r e n were seen as v u l n e r a b l e by
of these, 60% were deemed m e d i c a l l y v u l n e r a b l e based on
grounds.
In o t h e r words, b o t h the p a r e n t s
perceived
the c h i l d
and
the m e d i c a l
vulnera-
explanations verbatim their
parents
clinical establishment
to be v u l n e r a b l e r e g a r d l e s s of a c t u a l p r e s e n t i n g
concern.
I t i s i n t e r e s t i n g to note that t h i s congruent p e r c e p t i o n of v u l n e r a b i l i t y was
most f r e q u e n t l y a s s o c i a t e d w i t h c h i l d r e n h a v i n g
illness.
Thus, the data suggest t h a t f o r some parents
c h i l d r e n t h e r e i s an e v e r - p r e s e n t
p a r e n t s who
of c h r o n i c a l l y i l l
g i v e n p o i n t i n the t r a j e c t o r y .
p a r t i c i p a t e d i n the p r e s e n t
study
expressed
of concern about t h e i r c h i l d r e n ' s i n c r e a s e d s u s c e p t i b i l i t y ness and w o r r i e d in hospital.
chronic
concern of v u l n e r a b i l i t y which o v e r r i d e s
the c h i l d ' s a c t u a l s t a t e of h e a l t h at any The
a h i s t o r y of
a great
deal
to acute
ill-
about what the c h i l d r e n might c a t c h as a r e s u l t of
T h i s may
be
e x p l a i n e d by
the r e i n f o r c i n g e x p e r i e n c e s
being
the n o t i o n of v u l n e r a b i l i t y and
of " t h i n g s going wrong" d u r i n g past
by
hospital-
Ill izations.
The
repercussions vigilant
parents'
response to concerns r e g a r d i n g
possible
negative
of h o s p i t a l i z a t i o n on t h e i r c h i l d r e n ' s h e a l t h was
to become
in their protective role.
L i k e the p a r e n t s
who
participated in
Levy's (1980) study, i t i s e v i d e n t
t h a t these parents
may
be
by h e a l t h p r o f e s s i o n a l s to o v e r - r e a c t
perceived
to c i r c u m s t a n c e s at hand as a r e s u l t
of a h e i g h t e n e d sense of the c h i l d r e n ' s v u l n e r a b i l i t y . *
The
Parents' The
Relationships with Health
current
study found t h a t p a r e n t s '
c a r e p r o f e s s i o n a l s are a m e a n i n g f u l aspect in hospital.
I t i s evident
that parents
f e r e n c e s between t h e i r p e r s p e c t i v e s professionals. was
However, the p a r e n t s
perceived On
r e l a t i o n s h i p s with
of t h e i r i l l n e s s
health
experiences
have some i n s i g h t i n t o the
regarding
i l l n e s s and
d i d not p e r c e i v e
s i m i l a r l y understood or a p p r e c i a t e d
consistent with
Care P r o f e s s i o n a l s
those of
that t h e i r
health
viewpoint
by h e a l t h p r o f e s s i o n a l s .
This i s
the f i n d i n g of Hayes M o r r i s et a l . (1982) t h a t the
they were given no
the whole, the p a r e n t s
who
opportunity
dif-
parents
to openly d i s c u s s t h e i r f e e l i n g s .
p a r t i c i p a t e d i n the c u r r e n t study were
i n g of the p r o f e s s i o n a l p e r s p e c t i v e and were p r o t e c t i v e o f h e a l t h
accept-
profes-
s i o n a l s as a group. The
research
s h i p s between p a r e n t s
l i t e r a t u r e which s p e c i f i c a l l y a d d r e s s e s
and h e a l t h p r o f e s s i o n a l s seems to have a s i n g l e
f o c u s , t h a t of the p a r e n t - p h y s i c i a n Woolley & F i s h e r , 1974; al., tion. by
1976;
relation-
r e l a t i o n s h i p (Kane, Leymaster,
K i r k p a t r i c k , Hoffman & Futterman, 1975;
Mulhern, C r i s c o & C a m i t t a , 1981)
Olsen,
Kupst et
and most r e l a t e to communica-
T h i s b i a s seems a n a t u r a l r e s u l t of the r e s e a r c h b e i n g
conducted
physicians. Hewitt et a l . (1970) found t h a t c o n t i n u i t y of the
caring
112 r e l a t i o n s h i p was i n f l u e n t i a l i n d e t e r m i n i n g the p a r e n t s ' with care. expressed
satisfaction
Many o f the p a r e n t s who p a r t i c i p a t e d i n the p r e s e n t the importance
of a continuous
study
r e l a t i o n s h i p with care g i v e r s
and a few mentioned l a c k of c o n t i n u i t y as a source of f r u s t r a t i o n ; however, t h e r e was no evidence of d i r e c t l i n k s between l a c k o f c o n t i n u i t y and d i s s a t i s f a c t i o n with care. of
The f a c t
t h a t the p a r e n t s were v e r y
protective
the h e a l t h s t a f f may i n d i c a t e a concern t h a t the q u a l i t y o f t h e i r
c h i l d ' s c a r e c o u l d be compromised i f they appeared
critical
o r unappre-
ciative.
T h i s i s supported by the f i n d i n g t h a t some mothers i n the study
by Hewitt
e t a l . (1970) were u n w i l l i n g
to seek a second
opinion regarding
t h e i r c h i l d ' s i l l n e s s f o r f e a r of o f f e n d i n g the p h y s i c i a n i n c h a r g e ' — i t was too g r e a t a r i s k .
Porterfield's
t i o n t a k i n g i n persons
diagnosed
had
(1981) q u a l i t a t i v e study o f medica-
as s c h i z o p h r e n i c a l s o found
that c l i e n t s
r e s e r v a t i o n s about q u e s t i o n n i n g p h y s i c i a n s or d i s a g r e e i n g but the
underlying
r a t i o n a l e was n o t d i s c u s s e d .
The p a r e n t s who p a r t i c i p a t e d i n
the c u r r e n t study were r e l u c t a n t t o d i s c u s s t h e i r p r o t e c t i v e . s t a n c e toward h e a l t h p r o f e s s i o n a l s , which may be a form, o f s e l e c t i v e i n a t t e n t i o n . i n most i n s t a n c e s , the p a r e n t s r e f u s e d t o openly admit h a v i n g
Thus,
concerns
about t h e i r c h i l d r e n ' s c a r e i f they d i s a g r e e d w i t h the p r o f e s s i o n a l c a r e givers. Many o f the p a r e n t s i n the p r e s e n t study made r e f e r e n c e t o f i g h t ing
f o r t h e i r c h i l d and seemed to r e a c h a p o i n t where t h e i r
w i t h h e a l t h p r o f e s s i o n a l s were somewhat a d v e r s a r i a l . made t h i s statement
i n r e l a t i o n to a p a r t i c u l a r
relationships
H e w i t t . e t a l . (1970)
account:
T h i s was n o t the o n l y r e f e r e n c e t o the f e e l i n g t h a t p a r e n t s have to f i g h t f o r t h e i r c h i l d r e n , the f e e l i n g t h a t d o c t o r s (arid o t h e r p r o f e s s i o n a l people) a r e opponents r a t h e r than a l l i e s , t o be approached w i t h a m i x t u r e of c a u t i o n and m i l i t a n c e r a t h e r than c o n f i d e n c e (p.46).
113 Not
s u r p r i s i n g l y , the r e s e a r c h e r s
concluded t h a t p a r e n t s '
perceptions
of t h e i r r e l a t i o n s h i p w i t h a h e a l t h p r o f e s s i o n a l are i n f l u e n c e d by person's a b i l i t y not
against
who
p a r t i c i p a t e d i n the p r e s e n t
an a l l y
them.
to convey t h a t s/he T h i s was
i s an a l l y working w i t h
c e r t a i n l y evident
i s o f t e n someone who
study.
will
the
the
parents
i n the accounts of
parents
F u r t h e r , accounts suggest
simply
l i s t e n to the p a r e n t s '
that
perspec-
tives. K i r k p a t r i c k et a l . (1975) conducted a d e s c r i p t i v e study at f a c t o r s i n the r e l a t i o n s h i p between p a r e n t s i n f l u e n c e the development of t r u s t .
The
of c h i l d r e n having
provided
regarding
information
a n a l y s i s and
few v e r b a t i m
leukemia.
transcribed
However, the
report data
accounts were used to e x p l i c a t e the f i n d i n g s
found t h a t t r u s t i n the p h y s i c i a n was information
40
g u i d e l i n e s f o r the i n t e r v i e w s or
which l e d t h i s w r i t e r to view the study w i t h
clear, direct
p h y s i c i a n s which
data base was
interviews with parents no
and
looking
and
reservation.
The
researchers
promoted when the p a r e n t s
t h a t the p a r e n t s
were
wanted to know the
given
physic,
c i a n ' s suspicions.-:rather than w a i t i n g u n t i l t h i n g s were known f o r c e r t a i n . The
f i n d i n g t h a t p a r e n t s were concerned about the i m p l i c a t i o n s of
t h e i r c h i l d to a r e s e a r c h h o s p i t a l i n d i c a t e s an awareness of the crepancy between t h e i r view of the c h i l d ' s i l l n e s s and perspective. researchers miracles
T h i s was
the m e d i c a l
t r u s t i n the p h y s i c i a n .
The
were p e r c e i v e d
as not
t r u s t i n g the
physician's
I t appears that the data i n the study by K i r k p a t r i c k et a l .
(1975) are p r e s e n t e d the p a r e n t s '
dis-
a l s o i n t e r p r e t e d hope a s ' r e f u t i n g t r u s t ; t h a t i s , i n hoping f o r
the p a r e n t s
judgement.
seen as i n h i b i t i n g
admitting
from the p h y s i c i a n ' s
perspective.
frame of r e f e r e n c e r a t h e r
than
114 The p a r e n t s who p a r t i c i p a t e d i n the c u r r e n t study
also
expressed an u n d e r s t a n d i n g t h a t h e a l t h p r o f e s s i o n a l s o f t e n p e r c e i v e the c h i l d r e n ' s i l l n e s s e s as l e a r n i n g o p p o r t u n i t i e s and were concerned
about
the i m p l i c a t i o n s i n terms of the c h i l d r e n ' s i l l n e s s e x p e r i e n c e s .
There
was evidence t h a t the p r a c t i t i o n e r s ' d i f f e r i n g p e r s p e c t i v e d i d n e g a t i v e l y i n f l u e n c e p a r e n t s ' r e l a t i o n s h i p s w i t h i n d i v i d u a l h e a l t h team members. However, the e x p l a n a t i o n s u s u a l l y f o c u s e d on student nurses o r student doctors.
A g a i n , t h i s s u p p o r t s the f i n d i n g t h a t p a r e n t s a r e u n w i l l i n g t o
j e o p a r d i z e t h e i r r e l a t i o n s h i p s w i t h h e a l t h p r o f e s s i o n a l s who a r e i n f l u e n t i a l i n t h e i r children's care.
The accounts do n o t g i v e evidence
t h a t t r u s t i s g e n e r a l l y i n h i b i t e d when p a r e n t s have i n s i g h t i n t o h e a l t h professionals' perspectives.
To the c o n t r a r y , the d a t a r e v e a l
that
p a r e n t s c o n t i n u e t o t r u s t the i n d i v i d u a l s who a r e p e r c e i v e d as most important
to t h e i r c h i l d r e n ' s c a r e i n s p i t e of. t h e i r u n d e r s t a n d i n g o f
differences i n perspectives. The p a r e n t s i n the p r e s e n t study used hope as a s t r a t e g y t o cope w i t h the r e a l i t y o f t h e i r s i t u a t i o n and t o m a i n t a i n an o p t i m i s t i c o u t l o o k d e s p i t e u n d e r s t a n d i n g o f the m e d i c a l p e r s p e c t i v e .
That i s , the
p a r e n t s sometimes s e t a s i d e the b i o - m e d i c a l i n f o r m a t i o n r e g a r d i n g t h e i r c h i l d r e n ' s i l l n e s s e s i n f a v o u r o f i n f o r m a t i o n from t h e i r e x p e r i e n c e which supported a h o p e f u l s t a n c e . c o n c l u s i o n t h a t hoping
A g a i n , t h e r e was no evidence t o support a
inhibits trust i n health professionals.
K i r k p a t r i c k e t a l . (1975) found p r o g n o s t i c statements
t h a t d i a g n o s t i c i n f o r m a t i o n and
d i d not seem t o a l l e v i a t e much of the u n c e r t a i n t y
f o r p a r e n t s who were l o o k i n g f o r s p e c i f i c i n f o r m a t i o n about what would happen t o t h e i r c h i l d .
The r e s e a r c h e r s p e r c e i v e d the p a r e n t s t o be
115 l o o k i n g f o r p r e d i c t a b i l i t y which p h y s i c i a n s c o u l d not g i v e . t h a t , l i k e the p a r e n t s who
participated
i n the c u r r e n t study,
p a r t i c i p a n t s were r e q u e s t i n g i n f o r m a t i o n r e l a t e d that i s , i n f o r m a t i o n "from
I t may
be
the
to the i l l n e s s
experience,
t h e i r p o i n t of view."
The p a r e n t - h e a l t h p r o f e s s i o n a l r e l a t i o n s h i p was
d e s c r i b e d by
K i r k p a t r i c k et a l . (1975) as having a c o m p e t i t i v e s i d e based e n t s ' need to e x e r t c o n t r o l i n t h e i r i l l n e s s e x p e r i e n c e s .
on the p a r -
A p a r e n t a l need
to c o n t r o l c e r t a i n a s p e c t s of t h e i r r e l a t i o n s h i p s w i t h h e a l t h p r o f e s s i o n a l s i s supported by the accounts p r e s e n t e d
i n the c u r r e n t r e p o r t .
However, the d a t a r e v e a l t h a t p a r e n t s are not competing f o r a g r e a t e r p o r t i o n of the c o n t r o l per se, but are a c t i v e l y i n t e r v e n i n g when i t becomes apparent
t h a t the b e h a v i o u r
c h i l d ' s best i n t e r e s t s .
of c a r e g i v e r s i s not s e r v i n g t h e i r
I t i s e v i d e n t t h a t p a r e n t s monitor
their
child-
ren's e x p e r i e n c e s and become i n t o l e r a n t of a m e d i c a l p e r s p e c t i v e t h a t to take the e x p e r i e n c e s i n t o
fails
account.
D i f f i c u l t i e s i n the p a r e n t - h e a l t h p r o f e s s i o n a l r e l a t i o n s h i p f u r t h e r i l l u m i n a t e d i n a study by Mulhern et a l . (1981). examined communication among c h i l d r e n w i t h leukemia,
The
are
researchers
p a r e n t s and
phy-
s i c i a n s f o r the purpose of d e v e l o p i n g a n . o b j e c t i v e and d i r e c t method to q u a n t i f y the adequacy of the communication. mothers, f a t h e r s and f o r i n v e s t i g a t i o n was
Twenty-five
primary p h y s i c i a n p a r t i c i p a t e d .
children,
their
The i s s u e chosen
the c h i l d ' s m e d i c a l p r o g n o s i s and
the p r o t o c o l f o r
d e t e r m i n i n g p r o g n o s i s seemed w e l l c o n t r o l l e d ; however, no s y s t e m a t i c p r o cedure
f o r i n f o r m i n g p a r e n t s was
made e x p l i c i t
i n the r e p o r t .
c h o i c e q u e s t i o n n a i r e r e g a r d i n g the c h i l d ' s p r o g n o s i s was
A forced
completed
i n d e p e n d e n t l y by the mothers, f a t h e r s , and p h y s i c i a n s f o u r times - once
116 f o r t h e i r own how
p e r c e p t i o n of the p r o g n o s i s
and
one
for their perception
each of the o t h e r p a r t i c i p a n t s would respond.
o n l y one
questionnaire regarding
The
c h i l d r e n completed
t h e i r p e r c e p t i o n of the p r o g n o s i s
i n d i c a t i n g a f a c e t h a t v a r i e d from a s m i l e to a frown f o r each The
researchers
fathers.
by
question.
found t h a t " p h y s i c i a n s gave s i g n i f i c a n t l y
o p t i m i s t i c a p p r a i s a l s of the c h i l d r e n ' s p r o g n o s i s
of
less
than d i d mothers or
Furthermore, p h y s i c i a n s as w e l l as parents-appeared to mis-
understand each o t h e r ' s v i e w s " (p.482).
Physicians
significantly
underestimated the p r o g n o s t i c views of the p a r e n t s w h i l e the s i g n i f i c a n t l y overestimated
the views of the p h y s i c i a n . In o t h e r words,
the data show t h a t the p a r e n t s
h e l d a more o p t i m i s t i c view of t h e i r
ren's prognoses than d i d the p h y s i c i a n s . physicians perceived
parents
t h a t t h e i r own
Further, both parents
view was
a l s o h e l d by
the
child-
and
other
p a r t y ; t h a t i s , .they d i d not understand t h a t d i s c r e p a n t p e r s p e c t i v e s . were o p e r a t i n g .
The mothers and
fathers did accurately estimate
c h i l d ' s s e l f r e p o r t as b e i n g h i g h e r i n g s support parents
and
those
than t h e i r own
of the c u r r e n t study
physicians i s problematic
one
a s s o c i a t e d w i t h d i s c r e p a n t p o i n t s of view.
which the r e s e a r c h e r s
find-
of the d i f f i c u l t i e s i s
Apparently
the p h y s i c i a n s '
f a c t s than do p a r e n t s '
i n t e r p r e t to " r e f l e c t
i n t e r p r e t a t i o n i s t h a t the f i n d i n g s r e f l e c t
views
the f a i l u r e of p a r e n t s
remember r e l e v a n t i n f o r m a t i o n or i t s s i g n i f i c a n c e " (p.483).
explanatory
The
t h a t communication between
and
views c o r r e l a t e more h i g h l y w i t h m e d i c a l
(p.482).
their
the i n f l u e n c e s of
to
Another different
models f o r the c h i l d r e n ' s i l l n e s s e s .
Summary T h i s chapter has
examined the f i n d i n g s of the c u r r e n t study
in
117 l i g h t of r e l a t e d research presented t h a t commonalities
i n the l i t e r a t u r e .
I t i s apparent
e x i s t among p a r e n t s ' e x p e r i e n c e s w i t h t h e i r c h i l d r e n ' s
c h r o n i c i l l n e s s e s t h a t a r e independent
of m e d i c a l d i a g n o s e s .
Few s t u d i e s
have d e a l t d i r e c t l y w i t h h o s p i t a l i z a t i o n as a f a c e t o f the c h r o n i c ness e x p e r i e n c e .
ill-
However, the c o n s i s t e n c y of t h i s study's f i n d i n g s w i t h
those o f r e l a t e d r e s e a r c h i n d i c a t e t h a t they a r e r e p r e s e n t a t i v e o f the i l l n e s s e x p e r i e n c e r a t h e r than b e i n g u n i q u e l y r e l a t e d t o h o s p i t a l i z a t i o n . T h i s s e r v e s t o emphasize t h a t i n o r d e r to understand
t h e meaning p a r e n t s
g i v e t o the h o s p i t a l i z a t i o n of t h e i r c h r o n i c a l l y i l l
c h i l d r e n , one must
c o n s i d e r t h e i r ongoing
experiences with
illness.
I t i s e v i d e n t t h a t a c q u i s i t i o n o f i n f o r m a t i o n i s t y p i c a l l y an ongoing
concern f o r a l l p a r e n t s of c h r o n i c a l l y i l l
children.
Hospital-
i z a t i o n p l a c e s g r e a t e r emphasis on the concern, as p a r e n t s have an immediate need t o g a i n u n d e r s t a n d i n g mediators
i n order to f u l f i l l
of t h e i r c h i l d r e n ' s i l l n e s s experiences.
The l i t e r a t u r e
p o r t s the c u r r e n t f i n d i n g t h a t p a r e n t s have a unique t h e i r c h i l d r e n ' s i l l n e s s experiences i n h o s p i t a l . e x p l o r e the p a r e n t s ' p e r s p e c t i v e s o r address managing t h e h o s p i t a l s i t u a t i o n . ill
sup-
r o l e i n managing
However, few s t u d i e s
the p a r e n t s ' s t r a t e g i e s f o r
I t i s e v i d e n t t h a t p a r e n t s do know t h e i r
c h i l d r e n b e s t and t h a t t h e i r h o l i s t i c p e r s p e c t i v e o f the c h i l d r e n ' s
e x p e r i e n c e s w i t h i l l n e s s g i v e them unique and
t h e i r r o l e as
responses The
i n s i g h t i n t o the c h i l d r e n ' s needs
during h o s p i t a l i z a t i o n . l i t e r a t u r e emphasizes t h a t day-to-day l i v i n g w i t h a c h i l d ' s
c h r o n i c i l l n e s s c a r r i e s a s i g n i f i c a n t emotional l o a d f o r the p a r e n t s . H o s p i t a l i z a t i o n o f t e n adds t o the l o a d ; however, p a r e n t s r e l y on c o p i n g s t r a t e g i e s e s t a b l i s h e d over the course o f t h e i r e x p e r i e n c e w i t h
illness
118 and
generally function It i s evident
during
effectively. t h a t the i n t e n s e p a r e n t - i l l c h i l d bond, apparent
times of h o s p i t a l i z a t i o n , i s developed over the course of t h e i r
shared e x p e r i e n c e w i t h c h r o n i c i l l n e s s . contention
t h a t t h i s bond g i v e s
The l i t e r a t u r e s u p p o r t s the
s t r o n g d i r e c t i o n to the way
i l l n e s s i s managed on a d a i l y b a s i s as w e l l as i n h o s p i t a l . research
l i t e r a t u r e s u p p o r t s the c u r r e n t
the c h i l d ' s F i n a l l y , the
f i n d i n g t h a t p a r e n t s a r e con-
cerned about t h e i r r e l a t i o n s h i p s w i t h the h e a l t h p r o f e s s i o n a l s who for their children.
Communication i s p r o b l e m a t i c
care
as a common ground of
u n d e r s t a n d i n g between p a r e n t s and h e a l t h p r o f e s s i o n a l s has not been established. The f o l l o w i n g c h a p t e r w i l l summarize and conclude t h i s as w e l l as p r e s e n t
implications f o r nursing
p r a c t i c e and f u r t h e r
report research.
Chapter SUMMARY, CONCLUSIONS AND
6
IMPLICATIONS FOR
PRACTICE AND
RESEARCH
Summary T h i s study has
e x p l o r e d p a r e n t s ' p e r c e p t i o n s of t h e i r
with a h o s p i t a l i z e d , c h r o n i c a l l y i l l c h i l d .
L i t t l e has been w r i t t e n about
h o s p i t a l i z a t i o n i n the c o n t e x t of c h r o n i c c h i l d h o o d i l l n e s s and have addressed
experience
the t o p i c from the p a r e n t s ' p e r s p e c t i v e .
few
studies
Therefore,
study d i f f e r s from o t h e r s i n terms of i t s methodology and
this
f o c u s , as
i n t e r p r e t i v e approach has been used to g a i n i n - d e p t h u n d e r s t a n d i n g
the of
the
parents' perspective regarding h o s p i t a l i z a t i o n . L i t e r a t u r e r e l a t e d to the t o p i c was a background f o r the study and concerned life.
reviewed
i n o r d e r to p r o v i d e
i n d i c a t e d t h a t h e a l t h p r o f e s s i o n a l s are
about c h r o n i c c h i l d h o o d i l l n e s s and
the impact
i t has
on f a m i l y
H o s p i t a l i z a t i o n i s g e n e r a l l y r e c o g n i z e d to be one
of the
significant
f e a t u r e s of the c h r o n i c i l l n e s s e x p e r i e n c e
f o r f a m i l i e s ; however, i t
appears t h a t many of the commonly h e l d assumptions about these
families
w h i l e i n h o s p i t a l a r e unsupported by s y s t e m a t i c r e s e a r c h study.
Current
trends i n the c a r e of h o s p i t a l i z e d c h i l d r e n a r e p l a c i n g g r e a t e r emphasis the r o l e of the p a r e n t s i n p r o v i d i n g support
f o r the i l l c h i l d , as w e l l as
the r e s p o n s i b i l i t i e s of h e a l t h p r o f e s s i o n s toward p a r e n t s . that l i t t l e is
It i s
apparent
i s known about what h o s p i t a l i z a t i o n of a c h r o n i c a l l y i l l c h i l d
l i k e f o r these p a r e n t s and what we
g e n e r a l l y h o l d to be
t r u e has not been
a r e s u l t of i n - d e p t h e x p l o r a t i o n of the p a r e n t s ' p e r s p e c t i v e . The
c o n c e p t u a l framework f o r the study was
K l e i n m a n ( 1 9 7 7 , 1978, ;
on
et a l . , 1978)
based on the work of
r e g a r d i n g e x p l a n a t o r y models f o r
-119-
120 illness.
Kleinman has proposed
that i l l n e s s , a s o c i o c u l t u r a l l y defined
phenomenon, i s e x p l a i n e d and understood models."
F u r t h e r , he suggests
by what he terms " e x p l a n a t o r y
that there are three i n t e r a c t i n g
c u l t u r a l systems which support d i f f e r i n g
e x p l a n a t o r y models f o r i l l n e s s ;
these a r e the p r o f e s s i o n a l or b i o - m e d i c a l system, the p o p u l a r system t h a t i s i n d i v i d u a l and I t i s apparent
socio-
f a m i l y based, and
-
culture
the f o l k c a r e system.
t h a t i n d i v i d u a l s i n the p o p u l a r c u l t u r e system c o n s t r u c t
e x p l a n a t o r y models based
on t h e i r i l l n e s s e x p e r i e n c e s and
models guide b e h a v i o u r d u r i n g i l l n e s s e p i s o d e s . chronically i l l
As such, p a r e n t s o f
c h i l d r e n have e x p l a n a t o r y models founded
i l l n e s s e x p e r i e n c e s which can o n l y be f u l l y understood p e r s p e c t i v e and
cannot be assumed to be congruent
t h a t these
on
long-term
by e x p l o r i n g t h e i r
w i t h e x p l a n a t o r y models
h e l d by h e a l t h p r o f e s s i o n a l s . The
framework d i r e c t e d both the statement
c h o i c e of methodology which was r e s e a r c h and
of purposes
The
i n t e r p r e t i v e methodology enabled
e x p l o r e p a r e n t s ' p e r c e p t i o n s of t h e i r c h r o n i c a l l y i l l t i o n f o r the purposes
of:
clarifying
w i t h i n the c o n t e x t of c h r o n i c i l l n e s s ;
and
grounded
the w r i t e r to
child's
hospitaliza-
the meaning of h o s p i t a l i z a t i o n gaining insight into chronic i l l n e s s
i n f a m i l i e s h a v i n g a c h i l d w i t h c h r o n i c d i s e a s e ; and, v e n t i o n s which may
the
d e r i v e d from the i n t e r p r e t i v e s c h o o l of
i n c o r p o r a t e d a s p e c t s of the phenomenological
theory approaches.
and
determining
inter-
enhance the i n c i d e n t s of h o s p i t a l i z a t i o n .
Data c o l l e c t i o n i n v o l v e d the i n - d e p t h i n t e r v i e w i n g of p a r e n t s from s i x f a m i l i e s and was adapted
i n i t i a t e d by a s e m i - s t r u c t u r e d guide of q u e s t i o n s
from the work of Kleinman e t a l . (1978).
generated by the d a t a i t s e l f which enabled
A d d i t i o n a l q u e s t i o n s were
the r e s e a r c h e r to c o n s t r u c t .
121 accounts w i t h the p a r t i c i p a n t s t h a t addressed spective. accounts
and e x p l a i n e d t h e i r
per-
M u l t i p l e i n t e r v i e w s enhanced the c o n s t r u c t i o n o f c o n s i s t e n t and p r o v i d e d v e r i f i c a t i o n of the r e s e a r c h e r ' s u n d e r s t a n d i n g o f
the p a r e n t s ' e x p l a n a t i o n s . A n a l y s i s o f t h e d a t a o c c u r r e d both c o n c u r r e n t l y with, and subsequently developed
to, d a t a c o l l e c t i o n .
by an ongoing
Thus the a n a l y t i c framework was
d i a l e c t i c a l p r o c e s s between the r e s e a r c h e r ' s
i n t e r p r e t a t i o n s o f accounts
and t h e a c t u a l accounts.
The i n t e r p r e t i v e
approach n e c e s s i t a t e d tape r e c o r d i n g the i n t e r v i e w s and v e r b a t i m t r a n s c r i p t i o n of each tape p r i o r t o i n t e r v i e w i n g the p a r e n t ( s ) a g a i n . facilitated
This
t h e i d e n t i f i c a t i o n o f themes i n the accounts which were
i n t r o d u c e d d u r i n g the subsequent i n t e r v i e w f o r e l a b o r a t i o n by t h e p a r e n t ( s ) . The ongoing
n a t u r e of t h e i n t e r v i e w i n g p r o c e s s enabled v e r i f i c a t i o n o f
common themes o r concepts
among t h e p a r e n t s ' e x p l a n a t o r y models.
The p a r e n t s ' accounts were p r e s e n t e d
i n r e l a t i o n to the
common c a t e g o r i e s , themes and concepts which were the u n i f y i n g of t h e i r v e r b a l i z e d e x p e r i e n c e s . were used
Verbatim
e x c e r p t s from t h e accounts
t o e x p l a i n and e n r i c h the f i n d i n g s .
The p a r e n t s ' e x p l a n a t i o n s
f o r the h o s p i t a l i z a t i o n of t h e i r c h r o n i c a l l y i l l t i a l l y based
c h i l d r e n were e x p e r i e n -
and d e f i n e d w i t h i n the c o n t e x t o f t h e day-to-day
of l i v i n g w i t h c h r o n i c i l l n e s s . of t h e i r r o l e as mediator
threads
They viewed
experience
h o s p i t a l i z a t i o n i n terms
of t h e i r c h i l d ' s i l l n e s s experience w i t h i n a
b u r e a u c r a t i c s e t t i n g and were p r i m a r i l y concerned
with the a c q u i s i t i o n
of i n f o r m a t i o n t h a t would enable them t o c o n t r o l c e r t a i n a s p e c t s o f t h e e x p e r i e n c e f o r t h e i r c h i l d and f o r themselves.
Parental interventions,
w i t h r e g a r d t o c o n t r o l l i n g a s p e c t s of. the. c h i l d ' s e x p e r i e n c e , were focused
122 on p r o v i d i n g d i r e c t emotional support toward r e i n f o r c i n g the c h i l d ' s i n t e r n a l resources or manipulating p a r t i c i p a t i o n i n care.
the environment through
active
These two p a t t e r n s o f c o n t r o l were not m u t u a l l y
e x c l u s i v e and were used as the p a r e n t s found a p p r o p r i a t e w i t h i n t h e i r experience. The p a r e n t s ' u n d e r s t a n d i n g
and e x p l a n a t i o n o f t h e i r
w i t h i n the h o s p i t a l s e t t i n g was an important
theme i n t h e i r
relationships
accounts.
Emphasis was p l a c e d on the s t r o n g bond between p a r e n t and s i c k
child
which i s o f t e n i n t e n s i f i e d d u r i n g i n c i d e n t s o f h o s p i t a l i z a t i o n as a r e s u l t of s h a r i n g a d i f f i c u l t
experience.
As such, some p a r e n t s p e r c e i v e d
h o s p i t a l i z a t i o n as an o p p o r t u n i t y to spend time w i t h t h e i r c h i l d i n a p a r t i c u l a r l y meaningful
way.
The p a r e n t s ' r e l a t i o n s h i p s w i t h h e a l t h
p r o f e s s i o n a l s were c h a r a c t e r i z e d by some u n d e r s t a n d i n g between
o f the d i s c r e p a n c i e s
the e x p l a n a t o r y models i n v o l v e d and concern about the e f f e c t s o f
d i s c r e p a n t v i e w p o i n t s on t h e i r c h i l d ' s i l l n e s s e x p e r i e n c e .
Although the
p a r e n t s were o c c a s i o n a l l y c r i t i c a l about i n d i v i d u a l s and/or the c a r e g i v e n t h e i r c h i l d , they were p r o t e c t i v e o f h e a l t h p r o f e s s i o n a l s as a group. The
f i n d i n g s o f the c u r r e n t study were d i s c u s s e d i n c o n j u n c t i o n
w i t h the f i n d i n g s o f r e l a t e d r e s e a r c h a p p e a r i n g i n the l i t e r a t u r e and were found
t o be congruent
w i t h o t h e r s ' work.
I t was apparent
that
i s known about h o s p i t a l i z a t i o n as a f a c e t o f the c h r o n i c i l l n e s s and
little
experience
t h a t few s t u d i e s have approached c h r o n i c i l l n e s s from a p e r s p e c t i v e
which enabled
i n - d e p t h e x p l o r a t i o n of the p a r e n t s ' p e r c e p t i o n s .
H o s p i t a l i z a t i o n \appears
t o p r e s e n t few problems t h a t a r e unique w i t h i n
the c h r o n i c i l l n e s s e x p e r i e n c e , a l t h o u g h the d i f f i c u l t i e s may be p e r c e i v e d
123 d i f f e r e n t l y and
responses m o d i f i e d because of the h o s p i t a l s e t t i n g .
For example, n o r m a l i z a t i o n was study. to
a concern f o r p a r t i c i p a n t s i n the
current
However, the l i t e r a t u r e i n d i c a t e s t h a t , r a t h e r than b e i n g
times of h o s p i t a l i z a t i o n t h i s concern i s an ongoing aspect
with: c h r o n i c i l l n e s s .
I t was
of
apparent t h a t the meaning p a r e n t s
unique living
g i v e to
t h e i r i l l n e s s experience
i n h o s p i t a l i s a r e f l e c t i o n of the t r a j e c t o r y
of t h e i r l i f e
with a c h r o n i c a l l y sick
Conclusions
experience
and
Implications for
child.
Nursing
A number of c o n c l u s i o n s can be drawn from the f i n d i n g s of
this
study which have i m p l i c a t i o n s f o r n u r s i n g p r a c t i c e when i t i n v o l v e s c a r i n g f o r parents
of c h r o n i c a l l y i l l c h i l d r e n d u r i n g times of h o s p i t a l -
ization. The
first
i s t h a t the p a r e n t s ' e x p l a n a t o r y
are e x p e r i e n t i a l l y based and behaviour i n h o s p i t a l .
s e r v e to g i v e meaning and
Thus, p a r e n t s ' needs, concerns,
o n l y be understood by e x p l o r i n g t h e i r p e r s p e c t i v e s . crepancies and
models f o r i l l n e s s
t h a t e x i s t between the e x p l a n a t o r y
d i r e c t i o n to and
responses
Further,
models u t i l i z e d by
h e a l t h p r o f e s s i o n a l s o f t e n r e s u l t i n m i s u n d e r s t a n d i n g s and
f a c t i o n with
care.
needs of these the p a r e n t s '
p a r e n t s must i n c o r p o r a t e knowledge and
perspective.
and
can
disparents
dissatis-
T h i s i m p l i e s t h a t care which a p p r o p r i a t e l y meets the an a p p r e c i a t i o n of
In a d d i t i o n , h e a l t h p r o f e s s i o n a l s have an
o b l i g a t i o n to e x p l a i n t h e i r p o i n t of view i n o r d e r understanding
the
their
to enhance p a r e n t a l
f a c i l i t a t e n e g o t i a t i o n of care t h a t i s m u t u a l l y
satisfying. Secondly, one
can conclude t h a t p a r e n t s
of h o s p i t a l i z e d
124 chronically i l l
c h i l d r e n have some common concerns which should be
a n t i c i p a t e d by h e a l t h p r o f e s s i o n a l s when p l a n n i n g
care.
These i n v o l v e :
a c q u i s i t i o n of i n f o r m a t i o n ; c o n t r o l of the i l l n e s s e x p e r i e n c e
i nhospital
f o r the c h i l d and f o r themselves; and, the dilemma the p a r e n t s
f a c e when
caught between a l l e g i a n c e t o t h e i r c h i l d and dependence on h e a l t h p r o f e s sionals.
These areas
provide health p r o f e s s i o n a l s with d i r e c t i o n f o r
a s s e s s i n g the needs o f p a r t i c u l a r p a r e n t s r e l e v a n t t o t h e i r unique e x p e r i e n c e
with
and p l a n n i n g
care that i s
illness.
S p e c i f i c i m p l i c a t i o n s f o r n u r s i n g w i l l now be d i s c u s s e d by r e l a t i n g the c o n c l u s i o n s
t o examples from n u r s i n g p r a c t i c e .
knowledge among nurses t h a t of t h e i r c h i l d ' s i l l n e s s . parents
b u t i t i s focused
parents
r e q u i r e honest, complete
explanations
More and more i n f o r m a t i o n i s b e i n g g i v e n t o on what p r a c t i t i o n e r s f e e l i s n e c e s s a r y
a professional perspective.
from
As Kleinman e t a l . (1978) argue, h e a l t h
p r o f e s s i o n a l s hold d i f f e r e n t explanatory the p o p u l a r
I t i s common
c u l t u r e system.
models than do i n d i v i d u a l s i n
Thus the i n f o r m a t i o n g i v e n t o p a r e n t s may be
t o t a l l y i n a p p r o p r i a t e as the c h i l d ' s d i s e a s e i s addressed r a t h e r than the i l l n e s s experience.
I n o t h e r words, nurses may a p p r o p r i a t e l y a n t i c i p a t e
the p a r e n t s ' need to r e c e i v e i n f o r m a t i o n but then may g i v e t h a t i s not r e l e v a n t t o them.
I t i s evident
assume they know what the p a r e n t s p e r s p e c t i v e s i n t o account. parent
that nurses
need and so must take
information should n o t
the p a r e n t s '
The o n l y way t h i s can occur i s by a s k i n g
f o r his/her viewpoint,
as perspectives v a r y
i n accordance w i t h d i f f e r e n c e s i n t h e i r i l l n e s s Awareness of the p a r e n t ' s
each
from person t o p e r s o n experiences.
p e r s p e c t i v e i s not s u f f i c i e n t t o
i n s u r e t h a t the care which i s p r o v i d e d w i l l meet h i s / h e r needs.
125 Kleinman et a l . (1978) s t a t e t h a t i n order s a t i s f y i n g , h e a l t h p r o f e s s i o n a l s and ground of common u n d e r s t a n d i n g .
p r o c e s s by
sharing
their perceptions ping
the assessment phase of
t h e i r observations
of the c h i l d ' s i l l n e s s .
nurse and
can
say
f o r the i l l c h i l d .
the
and by
asking
the
parents f o r
However, t h i s i s o n l y a There i s no
step-
formula f o r
t h a t i t i n v o l v e s c o l l a b o r a t i o n between
the p a r e n t to f o r m u l a t e and
p l a n of care illustrate
one
from a
Nurses can b e g i n to e s t a b l i s h t h i s
stone to the p r o c e s s of n e g o t i a t i o n .
n e g o t i a t i o n but
mutually
p a r e n t s must n e g o t i a t e
"ground 'of common u n d e r s t a n d i n g " d u r i n g nursing
f o r care to be
The
c a r r y out
a mutually
the
acceptable
f o l l o w i n g example i s g i v e n
to
point.
I t i s common knowledge t h a t p a r e n t s o f h o s p i t a l i z e d c h i l d r e n are concerned about p a i n f u l procedures which i n v o l v e t h e i r c h i l d r e n .
Often
the i d e a l s o l u t i o n f o r them i s to a v o i d h a v i n g the procedure done; however, from the m e d i c a l p e r s p e c t i v e
t h i s may
not be w i s e .
procedure i n v o l v e s the n u r s e , i t i s important t h a t s/he t i o n from the p r o f e s s i o n a l m e d i c a l v i e w p o i n t and parent's perspective.
D i f f e r e n c e s between how
view the s i t u a t i o n w i l l become e v i d e n t n e g o t i a t i o n p o i n t s f o r the p l a n n i n g differ
that n e g o t i a t i o n i s required.
When a p a i n f u l o f f e r an
t h a t s/he
ask
the nurse and
through d i s c u s s i o n and
of c a r e .
I t i s o n l y when
However, a c c o r d i n g
explana-
for
the
parent
serve
as
perspectives
to Kleinman (1977,
1978), t h i s i s n e c e s s a r i l y the case when h e a l t h p r o f e s s i o n a l s and interact.
the
Care that i s m u t u a l l y s a t i s f y i n g can be n e g o t i a t e d
clients
i f there i s
a w i l l i n g n e s s on the p a r t of the nurse to a l t e r some a s p e c t s of the care i s provided
i n order
Parents' her
to accommodate the p a r e n t ' s
unique, h o l i s t i c p e r s p e c t i v e
experience with chronic
way
perspective.
of t h e i r c h i l d and
i l l n e s s makes them i n v a l u a b l e
his/
informants
r e g a r d i n g the c h i l d ' s needs and responses
during h o s p i t a l i z a t i o n .
However, t h e i r p e r s p e c t i v e i s s y s t e m a t i c a l l y , d i s r e g a r d e d by
nurses
w i t h i n the p r o f e s s i o n a l m e d i c a l c a r e system. ^In t h a t n u r s i n g p u r p o r t s to view t h e i r c l i e n t s i n a h o l i s t i c manner, t h i s has broad
implications
f o r the b a s i c e d u c a t i o n of student nurses as w e l l as c o n t i n u i n g educat i o n f o r p r o f e s s i o n a l nurses. ness and concept
We
have been i g n o r i n g one
t h a t i s the c l i e n t ' s i l l n e s s e x p e r i e n c e .
f a c e t of
The use of
F i n a l l y , one
illness.
can conclude .that p a r e n t s are s e l f - r e l i a n t i n
c o p i n g w i t h the emotional
impact
of h o s p i t a l i z a t i o n and do not view
nurses as a r e s o u r c e i n terms of emotional support. t i o n s f o r p r a c t i c e i n t h a t nurses p e r c e i v e themselves
T h i s has to be
advocates which i s d i s c r e p a n t from the view h e l d by p a r e n t s .
and
the
of e x p l a n a t o r y models i n n u r s i n g e d u c a t i o n would promote a more
h o l i s t i c view of c l i e n t s i n r e l a t i o n to
evidence
ill-
implica-
client This i s
t h a t the c a r e p r o v i d e d to p a r e n t s does not meet t h e i r needs
supports the p r e v i o u s s u g g e s t i o n s r e g a r d i n g n e g o t i a t i o n of c a r e . I t i s apparent
changing
t h a t t h i s study g i v e s d i r e c t i o n f o r ways of
the d e l i v e r y of n u r s i n g c a r e which would enhance p a r e n t s '
experiences with t h e i r c h r o n i c a l l y i l l
children i n hospital.
Implica-
t i o n s f o r f u r t h e r r e s e a r c h i n the a r e a a r e a l s o e v i d e n t and w i l l
be
d i s c u s s e d i n the f o l l o w i n g s e c t i o n .
Implications f o r Further
Research
T h i s study has demonstrated t h a t i n - d e p t h e x p l o r a t i o n of the p a r e n t s ' p e r s p e c t i v e p r o v i d e s v a l u a b l e i n s i g h t i n t o the f a m i l y ' s c h r o n i c i l l n e s s experience i n h o s p i t a l .
D u r i n g the study, s e v e r a l q u e s t i o n s
a r o s e i n the mind of the r e s e a r c h e r which have i m p l i c a t i o n s f o r f u t u r e
127 r e s e a r c h o f t h i s k i n d i n the a r e a of c h r o n i c c h i l d h o o d i l l n e s s .
These
q u e s t i o n s w i l l now be addressed. The long-term
first
i s , how do p a r e n t s p e r c e i v e h o s p i t a l i z a t i o n i n the
scheme o f t h e i r i l l n e s s experience?
Two t h i n g s prompted the
q u e s t i o n ; that i s , the r e s e a r c h s t u d i e s which examined p a r e n t s ' views of chronic childhood i l l n e s s placed r e l a t i v e l y l i t t l e
emphasis on h o s p i t a l -
i z a t i o n w h i l e the p a r e n t s who p a r t i c i p a t e d i n t h i s study e x p l a i n e d t h a t i n c i d e n t s of h o s p i t a l i z a t i o n o f t e n a f f e c t e d l i f e a f t e r the admission was o v e r .
a t home f o r .some time
T h i s l e d the r e s e a r c h e r t o q u e s t i o n whether
the p a r e n t s ' p e r c e p t i o n s change once the h o s p i t a l admission suggest
t h a t another
i z a t i o n through
study might f o l l o w p a r e n t s from the time o f h o s p i t a l -
d i s c h a r g e and i n t o the home.
l i e s i n greater understanding t o r y of the i l l n e s s
i s over and
The v a l u e o f t h i s
approach
o f h o s p i t a l i z a t i o n i n terms o f the t r a j e c -
experience.
The p r e s e n t study a l s o g i v e s evidence change over r e p e a t e d h o s p i t a l i z a t i o n s .
that parents' perceptions
This implies that a l o n g i t u d i n a l
study which f o l l o w s p a r e n t s through m u l t i p l e h o s p i t a l i z a t i o n s would p r o v i d e v a l u a b l e i n s i g h t i n t o the t r a j e c t o r y o f t h e i r e x p e r i e n c e .
also A
study such as t h i s c o u l d be i n c o r p o r a t e d i n t o the one p r e v i o u s l y d e s c r i b e d . T h i r d l y , the r e s e a r c h e r began to q u e s t i o n how the h o s p i t a l e x p e r i e n c e s of p a r e n t s w i t h c h r o n i c a l l y i l l c h i l d r e n compare w i t h of
parents having u s u a l l y w e l l c h i l d r e n .
those
D e s p i t e the f a c t t h a t most o f
the l i t e r a t u r e r e g a r d i n g h o s p i t a l i z a t i o n r e f e r s t o u s u a l l y w e l l c h i l d r e n , little
has been w r i t t e n from the p a r e n t s ' p e r s p e c t i v e .
This i n d i c a t e d to
the w r i t e r t h a t a study r e g a r d i n g h o s p i t a l i z a t i o n which i n v o l v e s p a r e n t s of
both a c u t e l y and c h r o n i c a l l y i l l c h i l d r e n would be a f r u i t f u l
area
128 for
further
research.
Finally,
the r e s e a r c h e r
members p e r c e i v e h o s p i t a l i z a t i o n .
began to q u e s t i o n
how
other
family
In t h a t each f a m i l y member has
a
d i f f e r e n t e x p e r i e n c e i n r e l a t i o n to the i l l c h i l d ' s h o s p i t a l i z a t i o n , i t stands to r e a s o n t h a t the meaning g i v e n g r e a t l y among the members. h o s p i t a l i z a t i o n has but
l i t t l e has
The
not been addressed through i n - d e p t h
c h i l d r e n and
valuable chronic
experiences
and,
the c h i l d ' s h o s p i t a l i z a t i o n .
This implies
vary
l i t e r a t u r e indicates that:
been w r i t t e n from the c h i l d r e n ' s p e r s p e c t i v e ;
s i b l i n g s ' perspective. ill
research
a s i g n i f i c a n t impact on i l l c h i l d r e n ' s l i f e
of an i l l c h i l d are a f f e c t e d by t h i s t o p i c has
to h o s p i t a l i z a t i o n would
siblings
However,
e x p l o r a t i o n of
the
t h a t s t u d i e s of the p e r c e p t i o n s
t h e i r s i b l i n g s regarding
h o s p i t a l i z a t i o n would
of
be
i n providing a d d i t i o n a l i n s i g h t into f a m i l i e s ' experiences with childhood To
illness;
conclude, h o s p i t a l i z a t i o n i s only one
ongoing e x p e r i e n c e w i t h a c h r o n i c a l l y i l l c h i l d . h e a l t h p r o f e s s i o n a l s w i t h the o p p o r t u n i t y
f a c e t of
parents'
However, i t p r o v i d e s
to p o s i t i v e l y i n t e r v e n e
s i g n i f i c a n t p o i n t i n the i l l n e s s e x p e r i e n c e .
I t i s evident
t h a t one
the r e q u i s i t e s to p o s i t i v e i n t e r v e n t i o n i s an u n d e r s t a n d i n g of the perspective.
at a of parents'
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The p s y c h o l o g y of i l l n e s s . I n C h r i s t o p h e r s o n , V.A., Coulter, P.P. & Wolanin, M.O. R e h a b i l i t a t i o n nursing: perspectives and a p p l i c a t i o n s . New York: McGraw-Hill Book Company, 1974.
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S p i n e t t a , J . J . Communication p a t t e r n s i n f a m i l i e s d e a l i n g w i t h l i f e threatening i l l n e s s . In S a h l e r , O.J.Z. ( E d . ) . The c h i l d and death. St. Louis: C.V. Mosby Company, 1968. S t a u f f a c h e r , R.A. C h i l d b e h a v i o r management t r a i n i n g , " f o r ^ p a r e n t s of c h r o n i c a l l y i l l c h i l d r e n : A p r o f e s s i o n a l a c t i v i t y i n need of r e s e a r c h . C h i l d r e n ' s H e a l t h Care, 1982, 11, 33-34. S t e r n , P.N.
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136
APPENDICES
137 Appendix A
Sample I n t e r v i e w Q u e s t i o n s *
1.
Would you t e l l me a b i t about what t h i s h o s p i t a l i z a t i o n i s • l i k e f o r you?
2.
Why do you t h i n k your c h i l d has been h o s p i t a l i z e d ?
3.
What do you expect might happen as a r e s u l t o f t h i s h o s p i t a l i z a t i o n ?
4.
What s o r t s o f t h i n g s
do you f i n d h e l p f u l when you a r e d e a l i n g
with
having a c h i l d i n h o s p i t a l ? 5.
How do you f i n d
6.
What s o r t s o f t h i n g s make i t more d i f f i c u l t your c h i l d
7.
I s there
that h o s p i t a l i z a t i o n a f f e c t s your day-to-day
life?
f o r you to manage when
i s i n hospital?
something that h e a l t h p r o f e s s i o n a l s might do t h a t you would
f i n d h e l p f u l during
the h o s p i t a l i z a t i o n ?
*-Adapted from Kleinman, A., E i s e n b e r g , L. & Good, B. C u l t u r e , i l l n e s s and c a r e : C l i n i c a l l e s s o n s from a n t h r o p o l o g i c and c r o s s - c u l t u r a l research. Annals o f I n t e r n a l M e d i c i n e , 1978, 88(2), 251-258.
138 Appendix B
E x p l a n a t i o n and Consent
My name i s C a r o l e Robinson and I am a n u r s i n g student i n the graduate program a t the U n i v e r s i t y o f B r i t i s h Columbia. I am i n t e r e s t e d i n how f a m i l y l i f e i s a f f e c t e d when a c h i l d i s c h r o n i c a l l y i l l . Specific a l l y , I am i n t e r e s t e d i n t a l k i n g w i t h you about what h o s p i t a l i z a t i o n i s l i k e f o r you. The purpose of t h i s study i s t o e x p l o r e how p a r e n t s manage w i t h the h o s p i t a l i z a t i o n o f t h e i r c h i l d . I would l i k e t o i n t e r v i e w you and to tape r e c o r d the c o n v e r s a t i o n . An i n t e r v i e w w i l l l a s t a p p r o x i m a t e l y one hour. We may t a l k once or more o f t e n , and w i l l d e c i d e t o g e t h e r how many i n t e r v i e w s take p l a c e . Many p a r e n t s f i n d i t h e l p f u l to t a l k over t h e i r concerns w i t h a h e a l t h p r o f e s s i o n a l . As w e l l , the i n f o r m a t i o n you g i v e me may a s s i s t n u r s e s c a r i n g f o r f a m i l i e s i n the f u t u r e . P l e a s e f e e l f r e e t o ask any q u e s t i o n s you wish about the study. I t i s important t o understand t h a t your d e c i s i o n to p a r t i c i p a t e or not to p a r t i c i p a t e i n the study w i l l n o t a f f e c t your c h i l d ' s c a r e i n any way. Should you d e c i d e t o a s s i s t me i n the study, you may withdraw at any time a g a i n w i t h o u t a f f e c t i n g your c h i l d ' s c a r e . Should you agree t o p a r t i c i p a t e , you have the r i g h t t o r e f u s e to answer any q u e s t i o n o r t o stop an i n t e r v i e w a t any time. As our c o n v e r s a t i o n s w i l l be tape r e c o r d e d , you a l s o have the r i g h t to request e r a s u r e o f any tape o r p o r t i o n o f a tape a t any time d u r i n g the study. Your name w i l l n o t be i d e n t i f i e d w i t h any of the study m a t e r i a l s . However, the o v e r a l l r e s u l t s o f the study may be p u b l i s h e d t o promote an u n d e r s t a n d i n g o f how p a r e n t s e x p e r i e n c e h o s p i t a l i z a t i o n .
I hereby
g i v e my consent
to p a r t i c i p a t e i n the study as d e f i n e d .
Signed:
Witnessed:
Date:
I f you wish t o r e c e i v e a copy of the r e s e a r c h r e p o r t , p l e a s e i n c l u d e your address.
