DEVELOPMENT OF A NURSING ASSESSMENT TOOL

TO EVALUATE THE HOME HEMODIALYSIS PATIENT

by

JO ANN ALBERS

B.S.N., U n i v e r s i t y of Washington, 1963

A THESIS SUBMITTED IN PARTIAL FULFILMENT OF

THE REQUIREMENTS FOR THE DEGREE OF

MASTER OF SCIENCE IN NURSING

i n 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

April, 1973
In presenting this thesis i n p a r t i a l fulfilment of the requirements for

an advanced degree at the University of B r i t i s h Columbia, I agree that

the Library s h a l l make i t freely available for reference and study.

I further agree that permission for extensive copying of t h i s thesis

for scholarly purposes may be granted by the Head of my Department or

by his representatives. It i s understood that copying or publication

of t h i s thesis for f i n a n c i a l gain s h a l l not be allowed without my

written permission.

The University of B r i t i s h Columbia

Vancouver 8, Canada

ii
 o

ABSTRACT

The purpose o f t h i s study was to c o n s t r u c t a n u r s i n g

assessment t o o l to a s s i s t the nurse i n e v a l u a t i n g the home

hemodialysis p a t i e n t ' s l e v e l o f f u n c t i o n i n g and h i s need f o r

f o l l o w up c a r e .

Relevant v a r i a b l e s f o r i n c l u s i o n i n the t o o l were

i s o l a t e d fromi a review o f the l i t e r a t u r e on the problems

encountered by the h e m o d i a l y s i s p a t i e n t ; a review o f twenty

patient records; nine s e m i - s t r u c t u r e d i n t e r v i e w s with patients

who had been r a t e d by d i a l y s i s personnel as having made

excellent, adequate or poor adjustments; and a q u e s t i o n n a i r e

submitted to e l e v e n d i a l y s i s nurses who were asked to name

those f a c t o r s they used when r a t i n g a p a t i e n t p o o r l y ad-

justed or w e l l adjusted,

A three category r a t i n g system was used f o r f o r t y -

e i g h t items i n the t o o l . A score o f one on any item i n -

d i c a t e d the l e a s t need f o r f o l l o w up care and a score of

three the g r e a t e s t n e e d .

F i v e d i a l y s i s experts agreed the t o o l c o n t a i n e d the

a p p r o p r i a t e v a r i a b l e s which are important i n d e t e r m i n i n g the

l e v e l o f f u n c t i o n i n g and needs f o r f o l l o w up care o f the home

hemodialysis patient.

A r e l i a b i l i t y t e s t i n g u s i n g f o u r p a i r s o f nurses to

a s s e s s twenty p a t i e n t s was s i g n i f i c a n t at the .05 l e v e l

iii
 IV

i n d i c a t i n g the p a t i e n t r a t i n g p r o v i d e d by the t o o l is

independent o f the rater.

76 pages
 ACKNOWLEDGEMENTS

I would l i k e to express my a p p r e c i a t i o n to the

p a t i e n t s and s t a f f at the Northwest Kidney Center f o r their

cooperation i n this study; In p a r t i c u l a r I wish to thank

Thomas Sawyer, M . D . , M a r j o r i e Colin, R . N . , L i n d a Cook, R . N . ,

and Kay O l h e i s e r .

My s p e c i a l thanks to Marion Jackson and Kathy

Copenhaver f o r t h e i r a s s i s t a n c e ; I a l s o wish to thank

P r o f e s s o r s Mary Cruise and Helen E l f e r t for their advice

and guidance.

v
 TABLE OP CONTENTS

Page

ACKNOWLEDGEMENTS y

LIST OF TABLES . viii

LIST OF FIGURES ix

CHAPTER

I. INTRODUCTION TO THE STUDY 1

Introduction . . . . . . . . . . . . . . . 1

The Purpose o f the Study . . . . . . . . . 5

The Problem i . . . . i' i i i . i , i i . 5

Assumptions 9

Definitions i . 10

L i m i t a t i o n s o f the Study 10

II. REVIEW OF THE LITERATURE 12

P h y s i o l o g i c a l Problems o f the Dialysis

Patient 12
S o c i a l - P s y c h o l o g i c a l Factors o f the
Home Hemodialysis P a t i e n t . . . . . . . 18
Assessment T o o l s and P e r i o d i c E v a l u a t i o n
Schemes f o r Maintenance Hemodialysis
Patients . . . . . . . . . . 20

General Assessment Tools . 22

III. METHODOLOGY 27

Overview . . 27

Sample 27

C o n s t r u c t i o n o f the P r e l i m i n a r y T o o l . . . 28

The R a t i n g Scale 35

vi
 vii

CHAPTER Page

III. METHODOLOGY (Continued)

Validation 36

Pre-Test . 36

R e l i a b i l i t y Testing 36

IV. ANALYSIS OF THE DATA 37

V a l i d i t y Testing 37

R e l i a b i l i t y Testing 37

A n a l y s i s o f R e s u l t s o f Assessment . . . . . 40

V. SUMMARY, CONCLUSIONS, AND RESEARCH

IMPLICATIONS .49

Summary . . . . . . . . . . . . . 49

Conclusions . . . . . . • • • • • 51

Research I m p l i c a t i o n s . • 52

BIBLIOGRAPHY 53

APPENDICES 59
A. Nursing Assessment Form f o r Maintenance

Home Hemodialysis P a t i e n t 60

B. Nurses' Questionnaire . 68

C. Semi-Structured Patient Interview

Schedule 70

D. V a l i d a t i o n Form 72

E. I n s t r u c t i o n s to Nurses P a r t i c i p a t i n g
i n the R e l i a b i l i t y T e s t i n g 74
 LIST OF TABLES

TABLE Page

li Well Adjusted P a t i e n t . . . . . 31

2A P o o r l y Adjusted P a t i e n t 31

3A P a i r e d Nurses Scores of F u n c t i o n i n g
L e v e l of P a t i e n t and D i f f e r e n c e s i n
Nurse Scores 38
4i S t a t i s t i c a l Treatment 39

viii
 LIST OF FIGURES

FIGURE Page

l; Nurse A Scores 42

2, Nurse B Scores 43

3. Mean Scores 44

4; Comparison o f Percentage Scores on

S e l e c t e d V a r i a b l e s o f Group x and
Group y 48

ix
 CHAPTER I

INTRODUCTION TO THE STUDY

I. INTRODUCTION

T h i s study focuses on systematic n u r s i n g a s s e s s -

ment to i d e n t i f y the needs of the maintenance home hemo-

dialysis patient.

The f i r s t artificial kidney was developed by A b e l ,

1
Rowntree and Turner i n 1913» but was never used on humans.
The f i r s t d i a l y z e r with p r a c t i c a l a p p l i c a t i o n f o r the treat-
2

ment of uremia was developed by Wilhelm K o l f f i n 1943*

Maintenance h e m o d i a l y s i s was demonstrated to be a

procedure which c o u l d l e a d to the r e h a b i l i t a t i o n o f some

3

p a t i e n t s with terminal renal f a i l u r e . In i960 D r . B e l d i n g

S c r i b n e r and h i s group a t the U n i v e r s i t y o f Washington i n

S e a t t l e implanted the f i r s t Q u i n t o n - S c r i b n e r shunt i n the

1
J. J . A b e l , L . G . Rowntree, and B. B, T u r n e r , "on
the Removal o f D i f f u s i b l e Substances from C i r c u l a t i n g Blood
by Means o f D i a l y s i s , " T r a n s a c t i o n s A s s o c i a t i o n American
Physicians, 1913* PP» 28 - 51.

2
W. F . K o l f f , " F i r s t x d i n i c a l Experience with the
A r t i f i c i a l K i d n e y , " Annals o f I n t e r n a l M e d i c i n e , v o l . L X I I ,
(1965). P . 608.

3
B e l d i n g H , S c r i b n e r , e t a l . , "The Treatment o f
Chronic Uremia by Means o f I n t e r m i t t e n t Hemodialysis 1 A P r e -
l i m i n a r y R e p o r t , " T r a n s a c t i o n s American S o c i e t y f o r A r t i f i c i a l
I n t e r n a l Organs, v o l . V I , (I960), p . 114

1
 2

forearm o f a p a t i e n t and began p e r i o d i c treatments u s i n g a

4

pumpless, low flow d i a l y z e r . Other treatment c e n t e r s were

soon e s t a b l i s h e d i n North America and Great B r i t a i n .

The extremely h i g h f i n a n c i a l c o s t o f h o s p i t a l based

treatment coupled w i t h the l a c k o f f a c i l i t i e s and t r a i n e d

p e r s o n n e l l e a d to the development o f programs which t r a i n e d

5
p a t i e n t s to d i a l y z e themselves at home.

Home d i a l y s i s offers several advantages over

h o s p i t a l based programs. These include; ( 1 ) reduced

i n c i d e n c e o f p h y s i o l o g i c a l c o m p l i c a t i o n s due to more fre-

quent d i a l y s i s which was p o s s i b l e because o f the lower c o s t

and a v a i l a b i l i t y o f space, ( 2 ) g r e a t e r independence and self

4
Wayne Quinton, David D i l l a r d , and B e l d i n g S c r i b n e r ,
" C a n n u l a t i o n o f Blood V e s s e l s f o r Prolonged H e m o d i a l y s i s , "
T r a n s a c t i o n American S o c i e t y f o r A r t i f i c i a l I n t e r n a l Organs,
vol. VI, (I960), p. 104.

5
R. A . B a i l l o d , et a l . , " O v e r n i g h t Hemodialysis i n
the Home," Proceedings o f the European D i a l y s i s and T r a n s p l a n t
A s s o c i a t i o n , v o l . I I . ( 1 9 6 5 ) . P . 9 9 ; K . C u r t i s , e t a l . . "Hemo-
d i a l y s i s i n the Home," T r a n s a c t i o n s American S o c i e t y f o r
A r t i f i c i a l I n t e r n a l Organs, v o l . X I . ( 1 9 6 5 ) . P . 7 s Joseph W.
Eshback, et a l . , "Unattended Overnight Home H e m o d i a l y s i s , "
T r a n s a c t i o n s American S o c i e t y f o r A r t i f i c i a l I n t e r n a l Organs,
v o l . X I I , ( 1 9 6 6 ) , p . 3 4 6 ; C . C L . Hampers, J . P . M e r r i l l and
E . Cameron, " H e m o d i a l y s i s i n the Home - A Family A f f a i r , "
T r a n s a c t i o n s American S o c i e t y f o r A r t i f i c i a l I n t e r n a l Organs,
v o l . X I , ( 1 9 6 5 ) , p . 3I J . P . Pendros and Terrance P o l l a r d ,
" E i g h t Years Experience with a Community D i a l y s i s C e n t e r , "
T r a n s a c t i o n s American S o c i e t y f o r A r t i f i c i a l I n t e r n a l Organs,
vol. XVI, (1970), p. 77. '

6
C. R. B l a g g , et a l . , "Home D i a l y s i s : S i x Years
E x p e r i e n c e , " New England J o u r n a l o f M e d i c i n e , v o l . CCXXCIII,
(November, 1 9 7 0 ) , p p . 1 1 2 6 - 1131.
 3
confidence f o r the p a t i e n t , (3) g r e a t e r freedom to schedule

dialysis at times most convenient f o r h i m s e l f , (4) g r e a t l y

lowered c o s t of treatment, ( 5 ) reduced need f o r professional

s e r v i c e s and medical f a c i l i t i e s , and (6) l e s s t r a v e l time

r e q u i r e d from home to medical f a c i l i t y which was o f t e n many

miles away,

A major disadvantage o f home d i a l y s i s is the i n -

creased s t r e s s on the spouse o f the p a t i e n t , e s p e c i a l l y when

7
the spouse assumes a major p a r t of the p a t i e n t ' s care.

There are c u r r e n t l y 4,857 p a t i e n t s on h e m o d i a l y s i s

i n the U n i t e d S t a t e s ( r e p o r t e d by 88.7 per cent of centers).

8
Of t h e s e , 2,001 p a t i e n t s are on home h e m o d i a l y s i s .

In the acute phase of h i s i l l n e s s , and d u r i n g h i s

t r a i n i n g p e r i o d , many s e r v i c e s are a v a i l a b l e to the patient.

Once he l e a v e s the treatment c e n t e r to perform h i s own

dialysis he r e c e i v e s medical c o n s u l t a t i o n and t e c h n i c a l

backup i n response to h i s own r e q u e s t . No systematic

assessment to seek out p h y s i o l o g i c a l or social-psychological

9
difficulties currently exists;

7
P h i l i p W. Shambraugh, et a l ; , "Hemodialysis i n
the Home - Emotional Impact on the Spouse," T r a n s a c t i o n s
American S o c i e t y f o r A r t i f i c i a l I n t e r n a l Organs, v o l . X I I I ,
(1967), p p ; 41 - 4 5 .
8
Computer P r i n t - O u t N a t i o n a l D i a l y s i s R e g i s t r y ,
Research T r i a n g l e Park, North C a r o l i n a , January, 19?2.

9
C. B l a g g , "Need f o r Home F o l l o w Up C a r e , " Un-
p u b l i s h e d Report to Kidney Disease A d v i s o r y Committee,
Washington-Alaska Regional Medical Program, 1972.
 4

Assessment o f p a t i e n t needs i s the f i r s t step i n

the n u r s i n g p r o c e s s , considered to be fundamental to p r o -

fessional nursing. S e v e r a l n u r s i n g l e a d e r s have examined

this process. Lewis d e s c r i b e s the process as consisting of

a knowledgeable, purposeful s e r i e s of thoughts and actions

10

to i d e n t i f y p a t i e n t s * needs. She sees t h i s process as con-

sisting o f assessment, i n t e r v e n t i o n , and e v a l u a t i o n .

Smith a l s o emphasized the need f o r t h i s p r o c e s s when

she s t a t e d , " I f nursing i s to be r e l i e v e d o f haphazard, non-

scientific methodology, i t must focus on those methods which

11

p r o v i d e a sound approach to the s o l v i n g o f n u r s i n g problems".

McCain looked a t the way nurses determined patient

needs and concluded t h a t they tend more to use i n t u i t i o n

12

than s y s t e m a t i c assessment. She p o i n t e d out the difficulties

o f making r e l i a b l e and accurate assessments i n t h i s way.

T h i s c o n c l u s i o n was a l s o emphasized by Zimmerman and

13
Gohrke i n t h e i r study o f the n u r s i n g p r o c e s s . They demon*
10
L . Lewis, " T h i s I B e l i e v e About the Nursing Process
- Key to C a r e , " Nursing Outlook, v o l . XIV, n o . 5* (May, 1968),
p p . 26 - 29;

11
Dorothy Smith, Manual f o r the Use of the Nursing
H i s t o r y T o o l . C o l l e g e of N u r s i n g , U n i v e r s i t y o f F l o r i d a ,
G a i n s v i l l e , F l o r i d a , 1 9 7 1 » P« 1»

12
R. Faye McCain, " N u r s i n g by Assessment Not I n t u -
i t i o n , " American J o u r n a l of N u r s i n g , v o l i LXV, n o . 4, ( A p r i l ,
1965), vTTT.
13
_.;Donna Zimmerman and C a r o l , G o h r k e , "The Goal D i r -
ected N u r s i n g Approachi I t Does Work," American J o u r n a l of
N u r s i n g , v o l . LXX, n o . 2, (February, 1970), p . 106.
 5

s t r a t e d t h a t assessment based s o l e l y on i n t u i t i o n c a r r i e d

no assurance t h a t the needs of i n d i v i d u a l p a t i e n t s are

identified. Though assessment by i n t u i t i o n has been w i d e l y

used i t has been^ pointed out t h a t nurses have f e l t a strong

need f o r a methodical system o f data g a t h e r i n g and patient

assessment t h a t is efficient, economical, r e a l i s t i c , and

14
practical.

It is the i n t e n t o f t h i s study to provide a t o o l

which w i l l a s s i s t the nurse to a s s e s s the l e v e l o f f u n c t i o n -

i n g o f the home h e m o d i a l y s i s p a t i e n t i n a methodical,

systematic, and r e l i a b l e way,

II. PURPOSE OF THE STUDY

The purpose of t h i s study i s to develop a reliable

assessment t o o l to be used by a nurse to i d e n t i f y a home

dialysis p a t i e n t ' s need f o r f o l l o w up c a r e . I t would

p r o v i d e an e f f i c i e n t and economical means o f r a t i n g the

l e v e l of f u n c t i o n i n g achieved by the p a t i e n t in social-

p s y c h o l o g i c a l and p h y s i o l o g i c a l areas.

III. THE PROBLEM

Statement o f the Problem

What are those s o c i a l - p s y c h o l o g i c a l and p h y s i o l o g i c a l

variables which are important i n determining the l e v e l of

14
Dolores E . L i t t l e and D o r i s C a r n e v a l i , Nursing
Care P l a n n i n g , P h i l a d e l p h i a : J . B . L i p p i n c o t t Company,
1969, P. 6 5 .
 6

f u n c t i o n i n g o f the home h e m o d i a l y s i s p a t i e n t ? Can these

variables be organized i n t o a t o o l which when used to assess

a patient, w i l l give r e l i a b l e and v a l i d data to a s s i s t the

nurse to determine h i s needs f o r f o l l o w up care?

Specific Objectives

The s p e c i f i c o b j e c t i v e s of the study are to: (1) de-

termine what a p a t i e n t regards as important i n evaluating

h i s own l e v e l of w e l l - b e i n g , (2) determine what experienced

dialysis personnel f e e l are the most important measures of

patient well-being, (3) c o n s t r u c t an instrument which w i l l

p r o v i d e the nurse with a w r i t t e n r a t i n g o f a p a t i e n t on

these i d e n t i f i e d v a r i a b l e s , and (4) t e s t the instrument for

r e l i a b i l i t y and v a l i d i t y .

Significance o f the Problem

S e v e r a l h e m o d i a l y s i s nurses have p o i n t e d out the

need f o r ongoing assessment and f o l l o w up care i n the home,

Komorita and Brand e x p l o r e d problem areas w i t h a group o f

p a t i e n t s and concluded t h a t the need f o r p s y c h o l o g i c a l and

sociological support d i d not end w i t h the hospitalization

15
p e r i o d and t h a t t h i s support should be ongoing,
A program o f home v i s i t s by the d i a l y s i s center
16
p e r s o n n e l to the home p a t i e n t is d e s c r i b e d by Stewart,

15
L , Brand and N , I . Komorita, " A d a p t i n g to Long
Term H e m o d i a l y s i s , " American J o u r n a l o f N u r s i n g , v o l , LXVI,
n o . 8, (August, 1966), p . 1781,

16
B e t t y M. Stewart, "Hemodialysis i n the Hornet The
Value o f House C a l l s by T r a i n i n g P e r s o n n e l , " Nursing C l i n i c s
of North America, v o l . IV, (September, 1969). p . 432,
 7

She p o i n t s out t h a t though the p a t i e n t performs h i s treatment

a t home the c e n t e r p e r s o n n e l continue to be r e s p o n s i b l e for

h i s w e l l - b e i n g and must assure themselves through p e r i o d i c

visits t h a t a l l i s going w e l l f o r the p a t i e n t . She does not

d e s c r i b e a systematic assessment scheme. D i s c u s s i n g the

f a m i l y o f the p a t i e n t with l o n g term i l l n e s s , Gaspard p o i n t s

out the severe d i s r u p t i o n s t h a t can occur to the e n t i r e

f a m i l y u n i t because o f the l o n g term i l l n e s s o f one o f its

members. She s t a t e s t h a t nurses must c o n t i n u a l l y a s s e s s the

needs o f these f a m i l i e s , plan services c a r e f u l l y and

" s y s t e m a t i c a l l y evaluate t h e i r progress toward e s t a b l i s h e d

17
goals"•

Systematic assessment based on standard c r i t e r i a

a l l o w s the nurse and o t h e r h e a l t h care team members to

b e t t e r p l a n support a c t i v i t i e s f o r the p a t i e n t and h i s

family.

Blagg has p o i n t e d out t h a t d i a l y s i s c e n t e r s working

with v e r y l i m i t e d budgets are understandably r e l u c t a n t to

i n v e s t funds i n f o l l o w up care to the p a t i e n t who i s

f u n c t i o n i n g w e l l a t home when t h i s would l i m i t t h e i r

18
a b i l i t y to care f o r new p a t i e n t s . T h i s reemphasizes the

17
Nancy Gaspard, "The Family o f the P a t i e n t with
Long Term I l l n e s s , " N u r s i n g C l i n i c s o f North America, v o l ,
V, n o . 1, (March, 1970), p . 80.

18
C. B l a g g , "Need f o r Home Follow Up C a r e , " Un-
p u b l i s h e d Report to Kidney Disease A d v i s o r y Committee,
Washington-Alaska R e g i o n a l M e d i c a l Program, 1972.
 8
need f o r e f f i c i e n t and inexpensive methods o f d e t e r m i n i n g

which p a t i e n t s have the g r e a t e s t need f o r f o l l o w up care so

that staff may be u t i l i z e d to best advantage.

In a d d i t i o n to d e t e c t i n g needs and p l a n n i n g care

there i s a need to begin to i s o l a t e those f a c t o r s which

most c o n t r i b u t e to b i o - p s y c h o - s o c i a l h e a l t h i n the mainten-

ance h e m o d i a l y s i s p a t i e n t so t h a t some p r e d i c t i v e ability

might be established.

Meldrum d i d an extensive retrospective survey o f

patients i n t h e i r program attempting to systematically

describe the e f f e c t s o f h e m o d i a l y s i s on s o c i a l f u n c t i o n i n g .

They p o i n t e d out t h a t " w i t h i n c r e a s i n g cognizance on the

part o f the p u b l i c , governmental agencies and the medical

profession that d i a l y s i s treatment i s medically possible,

the need o f some b a s i s o f judgement as to the s o c i o l o g i c as

w e l l as medical worth o f such treatment is increasingly

19
apparent;

Aydellote describes an e x p l o r a t o r y study on a

group o f f o u r t e e n d i a l y s i s patients conducted f o r the

purpose o f l e a r n i n g more about n u r s i n g problems i n t h i s

group. She p o i n t s out the need f o r f u r t h e r delineating

19
M. Meldrun, J . Wolfram and M. R u b i n i , "The
Impact of Chronic Hemodialysis Upon the Socio-economics
of a Veteran P a t i e n t G r o u p , " J o u r n a l o f Chronic D i s e a s e s
v o l . XXI, (1968), p p ; 37 - 52.
problems.

R e f e r r i n g to d i a l y s i s patients, Cummings s t a t e d

"the t o t a l e f f e c t i v e n e s s with which medical treatment,

vocational, s o c i a l and a l l o t h e r r e h a b i l i t a t i o n g o a l s are

a c h i e v e d depends l a r g e l y on the sharpness with which the

nurse observes the d i f f i c u l t i e s the p a t i e n t encounters".

21

Systematic assessment c o u l d f a c i l i t a t e that sharpness.

A standardized r a t i n g s c a l e with good r e l i a b i l i t y

and v a l i d i t y would a i d i n determining the e f f e c t of the

manipulation of non-patient variables such as different

types o f equipment and p r o c e d u r a l changes.

The value of a t o o l which would a s s i s t nurses to

reliably, c o n v e n i e n t l y , and e f f i c i e n t l y a s s e s s a p a t i e n t ' s

need f o r f o l l o w up care seems w e l l established.

IV. ASSUMPTIONS

T h i s study i s based on these assumptions: (1) there

are factors, some of which w i l l be common to a l l hemo-

dialysis patients, which, when c o n s i d e r e d , will reflect his

needs, (2) p a t i e n t s are able to i d e n t i f y many of t h e i r needs,

20
M y r t l e A y d e l o t t e , " N u r s i n g Care o f P a t i e n t s Under>
going H e m o d i a l y s i s : A Study R e p o r t , " Unpublished Report
presented to the T h i r d Annual Veterans A d m i n i s t r a t i o n
Workshop o f Chronic H e m o d i a l y s i s , Chicago, A p r i l , 1967.

21
Jonathan Cummings, H e m o d i a l y s i s : The P r e s s u r e s
and How P a t i e n t s Respond," American J o u r n a l of N u r s i n g ,
v o l . LXX, n o . 1, (February, 1970), p . 76.
and, (3) assessment with the use o f a t o o l a l l o w s more

systematic c o l l e c t i o n o f data than an i n f o r m a l assessment.

V. DEFINITIONS

Patient

In t h i s study the term w i l l r e f e r to the maintenance

home h e m o d i a l y s i s p a t i e n t .

Maintenance Home Hemodialysis P a t i e n t

A person with i r r e v e r s a b l e kidney d i s e a s e who must

r e c e i v e p e r i o d i c h e m o d i a l y s i s to s u s t a i n l i f e and who

performs t h i s treatment i n h i s home s e t t i n g without the

services o f a medical a s s i s t a n t .

Nurse

In t h i s study t h i s term w i l l r e f e r to a registered

nurse with experience i n the care o f h e m o d i a l y s i s patients.

Needs

The term w i l l be used to designate a requirement o f

the p a t i e n t a r i s i n g from the i m p o s i t i o n o f h i s i l l n e s s on

h i s l i f e and p e r c e i v e d by the nurse as b e i n g w i t h i n the

realm o f r e s p o n s i b i l i t y o f the h e a l t h team to offer

a s s i s t a n c e to meet.

VI. LIMITATIONS OF THE STUDY

T h i s study i s s u b j e c t to the f o l l o w i n g l i m i t a t i o n s :

(1) Only p a t i e n t s b e i n g d i a l y z e d on p a r a l l e l flow d i a l y s i s

equipment w i l l be i n c l u d e d i n the study, and (2) Patients

w i l l a l l be r e s i d i n g i n Washington S t a t e , and from the

 11

Northwest Kidney Center i n S e a t t l e which has a unique

community support system f o r r e n a l p a t i e n t s . Therefore,

the needs and l e v e l of f u n c t i o n i n g of these p a t i e n t s

cannot be g e n e r a l i z e d except to p a t i e n t s from c e n t e r s w i t h

a v e r y s i m i l a r p h i l o s o p h y and orientation.
 CHAPTER II

REVIEW OF THE LITERATURE

I. PHYSIOLOGICAL PROBLEMS OF THE DIALYSIS PATIENT

P h y s i o l o g i c a l Problems U n r e l a t e d to the D i a l y s i s Procedure

General d i s c u s s i o n s of medical c o m p l i c a t i o n s can

1

be found i n Pendras and S t i n s o n and Hampers and Schupak,

These are anemia, h e p a t i t i s , r e n a l osteodystrophy, neur-

opathy, h y p e r t e n s i o n , , c o n g e s t i v e heart f a i l u r e and sexual

problems.

One study o f anemia i n maintenance hemodialysis

patients p o i n t s t h i s out as a p e r s i s t e n t problem which

r e s u l t s i n high r i s k of h e p a t i t i s and i r o n o v e r l o a d from

2
repeated t r a n s f u s i o n s . These i n v e s t i g a t o r s demonstrated

that a majority of patients can be maintained on r e g u l a r

d i a l y s i s without blood t r a n s f u s i o n by a c c e p t i n g hematocrits

i n the 17 - 19 per cent range. Iron deficiency w i l l become

apparent u n l e s s monthly blood l o s s i s l e s s than 250 m l . and

1
J e r r y Pendras and G e r a l d S t i n s o n , The Hemodialysis
Manual, S e a t t l e , (1969). p p . 1 - 4$ Constantme Hampers and
Eugene Schupak, Long Term H e m o d i a l y s i s . New Yorkt Grune and
S t r a t t o n , 1967, p p . 70 - 146.
2
C. M. Compty, D. McDade and M. Kaye, "Anemia and
I r o n Requirements of P a t i e n t s T r e a t e d by Maintenance Hemo-
d i a l y s i s , " T r a n s a c t i o n s American S o c i e t y f o r A r t i f i c i a l
I n t e r n a l Organs, v o l ; XIV. (1968), p p . 426 - 432.

12
 13
dietary absorption of i r o n i s insufficient. Therefore, iron

therapy w i l l be necessary i n most patients.

Hepatitis, which has been found to be p r e s e n t i n a

c a r r i e r s t a t e i n some h e m o d i a l y s i s p a t i e n t s , has seemed to

be r e l a t e d to frequent blood t r a n s f u s i o n s which c a r r y the

virus, Blumberg p o i n t s out t h a t even i n p a t i e n t s who have

had a low r a t e o f t r a n s f u s i o n , or none a t a l l , h e p a t i t i s is

3
seen; He urges t e s i n g p a t i e n t s f o r A u s t r a l i a n a n t i g e n

positive blood and o f c o n s i d e r i n g n o n - p a r e n t e r a l r o u t e s o f

transmission, as w e l l as the p r e c a u t i o n s w i t h blood t r a n s -

fusions;

Renal osteodystrophy seems to have a number o f

causes i n the p a t i e n t with r e n a l f a i l u r e , i n c l u d i n g impaired

a b s o r p t i o n o f c a l c i u m i n the i n t e s t i n e , secondary hyperpara-

t h y r o i d i s m , abnormal metabolism o f Vitamin D, a c i d o s i s , and

c e r t a i n i n h i b i t o r s o f bone c a l c i f i c a t i o n c i r c u l a t i n g i n the

blood. Bone d i s e a s e f r e q u e n t l y develops and o f t e n progresses

in patients, even when t r e a t e d with p e r i o d i c dialysis.

Uremic neuropathy, which was a s e r i o u s problem i n

the f i r s t few years o f maintenance d i a l y s i s therapy, has

3
A , Blumberg and K . G i g e r , L e t t e r to the E d i t o r r e .
H e p a t i t i s and H e m o d i a l y s i s , New England J o u r n a l o f M e d i c i n e ,
v o l ; CCXXCIII, n o . 1 2 , (September 1 7 , 1 9 7 0 ) , pp, 6 5 7 - 6 5 8 .

D, Kim, et a l « , "Renal Osteodystrophy i n the Course

of P e r i o d i c D i a l y s i s f o r Chronic U r e m i a , " T r a n s a c t i o n s
American S o c i e t y f o r A r t i f i c i a l I n t e r n a l Organs, v o l , XIV,
(1968), pp; 3 6 7 ! - 3 7 1 .
 14

been shown to be preventable by adequate dialysis;

Tenckhoff a f t e r an extensive study o f the problem r e p o r t s ,

" I n s t i t u t i o n o f adequate d i a l y s i s before motor neuropathy

has developed w i l l prevent t h i s s e r i o u s c o m p l i c a t i o n . If

neuropathy develops or progresses i n p a t i e n t s maintained on

dialysis, the amount o f d i a l y s i s is inadequate and treatment

5
should be intensified";

Hypertension has continued to be a problem i n many

patients undergoing maintenance h e m o d i a l y s i s . The use of

a n t i h y p e r t e n s i v e drugs, r e s t r i c t i o n of dietary intake of

s a l t and water, and u l t r a f i l t r a t i o n d u r i n g d i a l y s i s have

produced s a t i s f a c t o r y r e s u l t s i n many p a t i e n t s . Bilateral

nephrectomy has been recommended, however, i n p a t i e n t s with

malignant h y p e r t e n s i o n or who have been unable to adequately

6
restrict their diet.

P e r i c a r d i t i s develops l a t e i n severe uremia and can

be r e v e r s e d with adequate d i a l y s i s . When p e r i c a r d i t i s is

seen i n p a t i e n t s a l r e a d y on a maintenance d i a l y s i s program,

5
H , Tenckhoff, R . H , Jebsen, and J . C . Honet, "The
E f f e c t o f Long Term D i a l y s i s Treatment on the Course o f
Uremic Neuropathy," T r a n s a c t i o n s American S o c i e t y f o r
A r t i f i c i a l I n t e r n a l " Organs, v o l . X I I I . (1967). pp; 58 - 6 l .
6
G. O n e s t i , e t a l . , " B i l a t e r a l Nephrectomy f o r
C o n t r o l o f H y p e r t e n s i o n i n U r e m i a , " T r a n s a c t i o n s American
S o c i e t y f o r A r t i f i c i a l I n t e r n a l Organs, v o l i XIV, (1968).
PP. 361 - 366;
 15
7
the treatment should be i n c r e a s e d i n frequency o r d u r a t i o n .

Congestive h e a r t f a i l u r e develops as a r e s u l t of salt

and water i n t a k e o r from f a i l u r e to remove adequate amounts

by d i a l y s i s i Long s t a n d i n g h y p e r t e n s i o n i s also implicated.

C o n t r o l of h y p e r t e n s i o n and blood volume u s u a l l y r e s u l t s i n

8
r e s o l u t i o n o f t h i s problem.

Sexual problems may be both p h y s i o l o g i c a l and

psychological• Many women have c e s s a t i o n o f menses with

uremia, and many men have l o s s o f l i b i d o and may be impotent;

With i n s t i t u t i o n o f r e g u l a r d i a l y s i s and w i t h g e n e r a l improve-

9
ment i n h e a l t h , these problems are sometimes resolved;

Infertility is the u s u a l r u l e , though there have

been a few s u c c e s s f u l pregnancies when the husband was the

p a t i e n t and two u n s u c c e s s f u l ones among women p a t i e n t s i n

the S e a t t l e program•

P r u r i t i s and insomnia are a l s o common problems for

the uremic p a t i e n t . D i a l y s i s may r e l i e v e the symptoms, but

i n some cases i t does n o t ; The cause i s not w e l l understood.

7
Constantine Hampers and Eugene Schupak, Long Term
H e m o d i a l y s i s , New Yorkj Grune and S t r a t t o n , 1967» P P ; a o "
81.
8
J e r r y Pendras and G . S t i n s o n , The Hemodialysis
Manual. S e a t t l e , 1969, S e c t i o n X I i ; p ; li

9
C . F . Gutch and Martha S t o n e r , Review of Hemodialysis
f o r Nurses and D i a l y s i s P e r s o n n e l . S a i n t L o u i s t The C . V .
Mosby Company, 1971, p i 151•
P h y s i o l o g i c a l Problems Related to the D i a l y s i s Procedure

Complications o c c u r r i n g d u r i n g the dialysis

10
procedure are w e l l o u t l i n e d by Pendras and S t i n s o n ; They

are: B l e e d i n g r e s u l t i n g from any source but worsened by the

need f o r a n t i c o a g u l a t i o n d u r i n g the procedure; acute hyper-

t e n s i o n r e s u l t i n g from volume o v e r l o a d , a n x i e t y , o r the

d i s e q u i l i b r i u m syndrome; h;,hypo tens i o n and shock resulting

from e x c e s s i v e a n t i h y p e r t e n s i v e drug therapy; fever caused

by i n f e c t i o n , pyrogenic r e a c t i o n , acute b a c t e r i a l contamina-

t i o n o f the blood c i r c u i t , g r o s s b a c t e r i a l contamination o f

the d i a l y s a t e c i r c u i t or d i a l y s a t e temperature above normal;

nausea and v o m i t i n g whose common causes are hypotension,

hypertension, d i a l y s i s d i s e q u i l i b r i u m syndrome, anxiety,

headache, drug r e a c t i o n or e x c e s s i v e c a l c i u m o r magnesium

i n the d i a l y s a t e ; headache u s u a l l y caused by dialysis

d i s e q u i l i b r i u m syndrome, h y p e r t e n s i o n , o r a n x i e t y ; cardiac

arrhythmia caused by h y p o t e n s i o n , hypokalemia, excessively

low h e m a t o c r i t , cardiac disease; chest p a i n commonly caused

by angina p e c t o r i s o r embolism o f blood c l o t or a i r ; muscle

cramps caused by r a p i d sodium and water removal; restlessness

caused by a n x i e t y and s u b c l i n i c a l motor neuropathy; Shortness

o f b r e a t h caused by volume o v e r l o a d or pulmonary or a i r

embolus; c o n v u l s i o n s caused by h y p e r t e n s i o n , water intoxica-

10
J e r r y Pendras and G . S t i n s o n , The Hemodialysis
Manual, S e a t t l e , 1969. S e c t i o n : X .
 17

tion, dialysis d i s e q u i l i b r i u m syndrome or chemical a b n o r m a l i -

tiesi

Problems w i t h C i r c u l a t i o n Access

There are two major types o f c i r c u l a t i o n a c c e s s for

the h e m o d i a l y s i s p a t i e n t : (1) the S i l a s t i c - T e f l o n cannula,

sometimes c a l l e d the S c r i b n e r Shunt or the e x t e r n a l A - V

11

shunt, and (2) the subcutaneous a r t e r i a l - v e n o u s fistula;

Access to the c i r c u l a t i o n with the S i l a s t i c - T e f l o n cannula

i s accomplished by clamping the e x t e r n a l t u b i n g and s e p a r a t i n g

it so t h a t d i r e c t access i s obtained i n t o the a r t e r y and

vein. Access to the c i r c u l a t i o n with the subcutaneous

fistula i s by puncture w i t h 14- - 16 gauge needles.

The S i l a s t i c - T e f l o n cannula can become disconnected

or c l o t i The s u r r o u n d i n g t i s s u e may become i n f e c t e d or

bleed. E x c e s s i v e a c t i v i t y i n v o l v i n g the e x t r e m i t y must be
12
avoided;

The subcutaneous a r t e r i o - v e n o u s fistula has fewer

complications, but g r e a t e r s k i l l i s r e q u i r e d to do the

punctures to o b t a i n c i r c u l a t i o n a c c e s s ;

A study by Achad of the subcutaneous f i s t u l a in

t h i r t y - t h r e e home h e m o d i a l y s i s p a t i e n t s drew the f o l l o w i n g

11
J e r r y Pendras and G. S t i n s o n , The Hemodialysis
Manual. S e a t t l e , 19&9, S e c t i o n V I .
12
Martha Read and Mary M o l l i s o n , " E x t e r n a l A r t e r i o -
venous S h u n t s , " American J o u r n a l o f N u r s i n g , v o l ; L X X I I , n o .
1, (January, 1972), ppi 81 - 85;
conclusions. "Although the subcutaneous arterial-venous

fistula remains f a r from i d e a l as a permanent access route

to the b l o o d s u p p l y , our experience indicates t h a t i t may

be s u c c e s s f u l l y employed i n home d i a l y s i s , and t h a t i t has

g e n e r a l advantages over the p r e v i o u s l y used Silastic-Teflon

13
cannulae•"

II. SOCIAL-PSYCHOLOGICAL FACTORS OF THE HOME HEMODIALYSIS

PATIENT

R e p o r t i n g the r e s u l t s of a study of nine p a t i e n t s

being dialyzed i n a research o r i e n t e d h o s p i t a l u n i t Shea

s t a t e s t h a t the emotional r e a c t i o n to the need f o r c h r o n i c

dialysis may r e p r e s e n t the g r e a t e s t o b s t a c l e to successful

14

rehabilitationi She d e s c r i b e s these r e a c t i o n s as consis-

t i n g mostly o f i r r i t a b i l i t y , apprehension, insomnia,

restlessness, and a n x i e t y i She a l s o r e p o r t s dietary

i n d i s c r e t i o n and unnecessary trauma to cannulas.

Wright, r e p o r t e d on 12 p a t i e n t s undergoing hemo-

13
A . Achad, a t a l . , "Subcutaneous A r t e r i a l - V e n o u s
F i s t u l a i n Home H e m o d i a l y s i s , " T r a n s a c t i o n s American
S o c i e t y f o r A r t i f i c i a l I n t e r n a l " O r g a n s , v o l ; XVI. (1970),
p p ; 280 - 283;

14
E i l e e n Shea, e t a l « , "Hemodialysis f o r Chronic
Renal F a i l u r e - P s y c h o l o g i c a l C o n s i d e r a t i o n s , " Annals o f
I n t e r n a l M e d i c i n e , v o l . L X I I I , n o ; 3, (March, 1965), p p ;
558 - 563.
 19
15
dialysis i n a community d i a l y s i s c e n t e r i n 1965. They

l i s t e d some o f the s t r e s s e s o f p a t i e n t s as (1) a c t u a l or

t h r e a t e n e d l o s s e s which i n c l u d e d p a r t s o f body f u n c t i o n , loss

of membership i n groups, failure o f plans or ventures,

changes i n way o f l i f e or l i v i n g , l o s s o f home, p o s s e s s i o n s

or f i n a n c i a l s t a t u s , and l o s s o f job or o c c u p a t i o n , (2) i n -

jury or threat of i n j u r y , (3) f r u s t r a t i o n i n drives or

derivatives! They note d e n i a l as the c h i e f p s y c h o l o g i c a l

defense i n t h i s group o f patients.

Norton d e s c r i b e d p a t i e n t s i n the S e a t t l e program

in 1967 to be r e l a t i v e l y l i t t l e d i s t u r b e d , as a whole, by

the treatment, which he a t t r i b u t e d to the massive support

for patients which was p r o v i d e d by the unique arrangement

of services, both f i n a n c i a l and m e d i c a l , p r o v i d e d by t h a t

16
community; He s t a t e s t h a t much more i s r e q u i r e d f o r

support o f these p a t i e n t s than what i s o r d i n a r i l y thought o f

as m e d i c a l s u p e r v i s i o n and a d v i c e .

Harry Si Abram r e p o r t s i n 1968 h i s c o n c l u s i o n about

17
the p s y c h o - s o c i a l a s p e c t s o f d i a l y s i s ; He sees the

15 \5
Robert G . Wright, P . Sand and G . L i v i n g s t o n , "Psycho
l o g i c a l S t r e s s During Hemodialysis f o r Chronic Renal F a i l u r e , "
Annals o f I n t e r n a l M e d i c i n e , v o l ; LXIV, (March, 1966), p p i
611 - 621;
1.6
C h a r l e s Norton, " C h r o n i c Hemodialysis as a M e d i c a l
and S o c i a l E x p e r i m e n t , " Annals o f I n t e r n a l M e d i c i n e ; , v o l . LXVI
(June, 1967), p p i 1267 - 1276.

17
Harry S. Abram, The P s y c h i a t r i s t , the Treatment o f
Chronic Renal F a i l u r e , and the P r o l o n g a t i o n o f L i f e , "
American J o u r n a l o f P s y c h i a t r y , v o l i CXXIV, n o ; 10, ( A p r i l ,
1968), pp 1351 - 1358;
 20

dependency-independency c o n f l i c t as the most significant

s t r e s s on the p a t i e n t . He s t a t e s t h a t although severe

emotional d i s t u r b a n c e s are not a u s u a l problem i n most r e n a l

u n i t s with a s e l e c t i o n process and a treatment-oriented

atmosphere, problems o f r e h a b i l i t a t i o n and adjustment require

a t t e n t i o n and u n d e r s t a n d i n g ;

Using the MMPI to study a group o f p a t i e n t s , Short

d e s c r i b e d d e n i a l as an e f f e c t i v e mental mechanism used by

18
hemodialysis patients to cope with t h e i r s t r e s s e s . He

emphasizes the i n e f f e c t i v e n e s s o f t h i s mechanism f o r the

f a m i l y and community and the i n a p p r o p r i a t e n e s s of i t for

the nurses and the doctors•

DeNour l i s t s some o f the s t r e s s e s he observed as

the t h r e a t o f death, l o s s o f plannable f u t u r e , dependency

on machines, l o s s o f body f u n c t i o n s and changes i n body

19
image, f r u s t r a t i o n of d r i v e s , and d e l a y o f gratification;.

He s t r e s s e s the need f o r s u p p o r t i v e p s y c h o l o g i c a l care;

III, ASSESSMENT TOOLS AND PERIODIC EVALUATION SCHEMES

FOR MAINTENANCE HEMODIALYSIS PATIENTS

No complete assessment to i d e n t i f y the needs of

18
M, J , Short and W, P . W i l s o n , " R o l e s o f D e n i a l i n
Chronic H e m o d i a l y s i s , " A r c h i v e s o f General P s y c h i a t r y , v o l ,
XX, ( A p r i l , 1969), PP 433 - 437.
19
A , K, DeNour, "Psychotherapy w i t h P a t i e n t s on
Chronic H e m o d i a l y s i s , " B r i t i s h J o u r n a l o f P s y c h i a t r y , v o l ,
CXVI, (February, 1970), pp 207 - 215;
 21
the c h r o n i c home h e m o d i a l y s i s p a t i e n t was found i n the

literature;

Kennedy developed a s c o r i n g system f o r rating

p a t i e n t s m e d i c a l l y i n o r d e r to e s t a b l i s h a prognosis. He
20
d i d not attempt a p s y c h o - s o c i a l or r e h a b i l i t a t i o n assessment.

P o t t e r used Kennedy*s assessment scheme to rate

p a t i e n t s i n h i s program and a l s o had the nurse r a t e the

21
patient i n terms o f h i s o c c u p a t i o n a l rehabilitation;

An assessment o f p a t i e n t s i n an i n - h o s p i t a l program

i n New York was done i n 1965 u s i n g such parameters as days

spent i n h o s p i t a l ; weekly a c t i v i t y r e c o r d s , nightly

s l e e p i n g t i m e , and three areas o f p s y c h o - s o c i a l adjustment.

These were (1) compliance to and acceptance of the therapeu-

t i c regimen o f maintenance h e m o d i a l y s i s , (2) response to and

achievement i n c o n s t r u c t i v e activity, and (3) m a t u r i t y and

22
extent of i n t e r p e r s o n a l relationships.

MacElveen, i n her d o c t o r a l d i s s e r t a t i o n , explored

the r e l a t i o n s h i p o f c o o p e r a t i o n between home dialysis

20
A . G. Kennedy, "A S c o r i n g System f o r A s s e s s i n g
Patients on Regular D i a l y s i s , " L a n c e t , v o l ; I, ( A p r i l 5»
1969), ppi 702 - 707i
21
D. J . P o t t e r and G . M. N i c k o s , "Assessment o f
P a t i e n t s Undergoing Home Maintenance D i a l y s i s , " A r i z o n a
M e d i c i n e , v o l i XXVII, ( A p r i l , 1970), pp. 76 - 79.

22
E . A . Friedman, e t a l . , " P s y c h o s o c i a l Adjustment
to Maintenance H e m o d i a l y s i s , " New York J o u r n a l of M e d i c i n e ,
v o l i LXX, (March, 1970), p p i 629 - 637.
 22
patient, his partner, and nurse to adherence to the medical
23
regimen, t o t a l a c t i v i t y and m o r a l e . She s t u d i e d twenty-

one p a t i e n t s , which was the p o p u l a t i o n o f t h a t c e n t e r , and

found s i g n i f i c a n t correlations i n these a r e a s ;

IV. GENERAL ASSESSMENT TOOLS

Bonney and Rothberg d e s c r i b e a nursing evaluation

form which was developed to i d e n t i f y and measure the needs

24

o f c h r o n i c a l l y d i s a b l e d persons f o r Nursing s e r v i c e ; The

t o o l i s d i v i d e d i n t o three s e c t i o n s : Section I i s designed

to r e f l e c t the p a t i e n t ' s p h y s i c a l c o n d i t i o n , Section II his

l e v e l o f p h y s i c a l and p h y s i o l o g i c a l f u n c t i o n i n g , S e c t i o n III

i s a d e s c r i p t i o n of patient behavior; Each o f the three

sections y i e l d a numerical score; These s c o r e s , t i t l e d X,

Y, and Z s c o r e s , are p l o t t e d on 3 p a r a l l e l s c a l e s o f 0 - 10,

They may then be used r e l a t i v e to each o t h e r to determine the

patient's areas o f s t r e n g t h and weaknesses; Reliability

and v a l i d i t y s t u d i e s were not r e p o r t e d ,

Williams reports the development o f the Patient

P r o f i l e which was designed to measure the n u r s i n g needs o f

23
P a t r i c i a MacElveen, E x p l o r a t i o n o f the Cooperative
T r i a d i n the I n v e s t i g a t i o n of Home D i a l y s i s P a t i e n t Outcomes,
Unpublished D o c t o r a l D i s s e r t a t i o n , U n i v e r s i t y of C o l o r a d o , 1971•
24
V i r g i n i a Bonney and June Rothberg, Nursing
D i a g n o s i s and Therapy: An Instrument f o r E v a l u a t i o n and
Measurement, New York: The N a t i o n a l League f o r N u r s i n g ,
19611
 23
25
patients. It i s based on seven b a s i c needst Nourishment,

Elimination, Rest, E x e r c i s e , S o c i a l I n t e r a c t i o n , Safety, and

Therapy. D i r e c t o b s e r v a t i o n s o f the p a t i e n t i s the suggested

mode o f data g a t h e r i n g ; The observer r a t e s the patient's

p h y s i c a l a b i l i t y to meet h i s needs as (a) adequate, (b) less

than adequate, o r (c) inadequate. He then r a t e s the

patient's response o r a t t i t u d e to meeting h i s needs as (a)

Positive Interest, which i s a g o a l - d i r e c t e d a c t i v i t y toward

meeting h i s needs; (b) P a s s i v e response, which i s b e h a v i o r

l a c k i n g i n i n t e r e s t but w i l l i n g to go along with o t h e r s

actions or suggestions; or (c) Extreme response which is

p a t i e n t b e h a v i o r extremely p o s i t i v e o r negative toward the

meeting o f needs, A n u m e r i c a l dependency score was o b t a i n e d

by r a t i n g each o f the f o u r t e e n items on a continuum o f 0 - 10,

T h i s allowed a t o t a l score range o f 140 - completely s e l f -

sufficient to 0 - completely dependent, Interrater reliability

co-efficients o f ;85 were r e p o r t e d l y obtained when p a i r s o f

nurses on e i g h t d i f f e r e n t h o s p i t a l u n i t s r a t e d a t o t a l o f 241

patients,

A y d e l o t t e d e s c r i b e s a t e s t o f p a t i e n t welfare which

consists o f three measures: (1) Number o f days i n h o s p i t a l ,

number o f f e v e r days, number o f p o s t - o p e r a t i v e days and doses

of n a r c o t i c s , a n a l g e s i c s , or sedatives, (2) Scaled measures:

P a t i e n t ' s mental a t t i t u d e , patient's p h y s i c a l independence,

25
Mary Edna W i l l i a m s , "The P a t i e n t P r o f i l e , "
Nursing Research, v o l . IX, n o . 3, (Summer, i960), pp. 122
TW.
s p e c i a l a s p e c t s o f independence, p a t i e n t ' s mobility,

patient's skin condition, patient's o p i n i o n of n u r s i n g

care g i v e n to him, and p h y s i c i a n s ' e v a l u a t i o n of patient's

c o n d i t i o n and p r o g r e s s , (3) Sampling measures of per cent

of time spent i n bed, i n c h a i r , up and i n communication and

26

occupied leisure; A " p o o r " to "good" s c a l e was used

f o r the s c a l e d measures; A committee of e x p e r t s wrote

graduated b e h a v i o r a l statements between these categories

and the r a t e r p l a c e d the p a t i e n t i n the a p p r o p r i a t e place

on the s c a l e . The r e l i a b i l i t y c o e f f i c i e n t o f the mental

attitude r a t i n g form was r e p o r t e d to be ;73 based on 85

pairs of independent r a t i n g s . R e l i a b i l i t y o f the o t h e r

measures was not r e p o r t e d . Face v a l i d i t y and significant

c o r r e l a t i o n between the item of P h y s i c i a n s ' evaluation

of p a t i e n t ' s c o n d i t i o n and most o f the o t h e r s i x indices

of p a t i e n t welfare were the t e s t s o f v a l i d i t y .

A p a t i e n t r a t i n g s c a l e was developed by R i c h and

Dent designed to measure changes i n a t t i t u d e s toward
27
patients; S i x x c r i t e r i a were s e l e c t e d f o r the instrument:

(1) test-retest r e l i a b i l i t y , (2) change i n response when a

patient changed, (3) i n t e r r a t e r agreement, (4) variation in

26
M y r t l e K i t c h e l l A y d e l o t t e , "The Use of P a t i e n t
Welfare as a C r i t e r i o n Measure," Nursing Research, v o l . X I ,
n o . 1, (Winter, 1962), p p . 10 - lW.

27
Rosemary R i c h and James K . Dent, " P a t i e n t R a t i n g
S c a l e , " Nursing Research, v o l . X I , n o . 1, (Winter, 1962),
pp. 10 - 14.
 25
response a c r o s s p a t i e n t s , (5) dimensionality, eg., the degree

to which the item-iis p o s i t i v e or negative, and (6) clarity

o f meaning. The o r i g i n a l r a t i n g s c a l e used 28 terms o r

adjectives such as: cooperative, grouchy, hard to p l e a s e ,

a model p a t i e n t , and asked the r a t e r to check whether t h i s

d e s c r i b e d the p a t i e n t v e r y w e l l , somewhat, a l i t t l e , not at

all, o r no o p i n i o n . The s c a l e was r e v i s e d to i n c l u d e only

22 items when the o r i g i n a l t o o l f a i l e d to meet the six

criteria. The second s c a l e had good s p l i t - h a l f r e l i a b i l i t y

and t e s t - r e t e s t r e l i a b i l i t y . I n t e r r a t e r agreement was low.

Schoening and Iverson d i s c u s s e d three years of

28

experience and r e v i s i o n s of the Kenney S e l f - c a r e evaluation.

I t u t i l i z e s a 5 - p o i n t r a t i n g s c a l e to measure six cate-

gories of s e l f care; Z e r o , one and three and four are

p r e c i s e l y defined categories; Two i s a " c a t c h a l l " cate-

gory used to c o n t a i n those p a t i e n t s who do not f i t the o t h e r

four precise definitions. The authors s t a t e t h e i r data

shows p a t i e n t s do not spend any g r e a t e r l e n g t h of time i n

t h i s category than i n the n e i g h b o r i n g ones and f e e l the

expanded middle p o r t i o n on the s c a l e has i n c r e a s e d i t s value

and made i t e a s i e r to use;

Summary o f the Review of the L i t e r a t u r e

In summary, the l i t e r a t u r e on h e m o d i a l y s i s has

28
Herbert Schoening and I v e r I v e r s o n , "Numerical
Scoring of Self-Care E v a l u a t i o n , " Archives of Physical
M e d i c i n e , v o l . XLIX, n o ; 1, (January, 1968), p p . 221 - 229.
been examined to e l u c i d a t e those p h y s i o l o g i c a l and social-

p s y c h o l o g i c a l parameters c o n s i d e r e d important i n judging

the w e l l - b e i n g and needs of the h e m o d i a l y s i s patient.

Various t o o l s used to evaluate h e m o d i a l y s i s p a t i e n t s have

been examinedi No completely s a t i s f a c t o r y t o o l was found

i n the l i t e r a t u r e . Other types o f g e n e r a l p a t i e n t welfare

r a t i n g systems were r e v i e w e d . Problems w i t h o b t a i n i n g

r e l i a b i l i t y and v a l i d i t y were notedA Various methods o f

s c o r i n g were e x p l o r e d i
 CHAPTER III

METHODOLOGY

I. OVERVIEW

The f o l l o w i n g procedure was used to develop an

instrument to r a t e p a t i e n t s on t h e i r l e v e l of w e l l being

and need f o r f o l l o w up c a r e . ( 1 ) The l i t e r a t u r e on hemo-

dialysis was explored to i d e n t i f y s p e c i f i c factors said to

be important i n d e t e r m i n i n g the p a t i e n t ' s l e v e l o f well

being. (2) P a t i e n t r e c o r d s were examined to e l i c i t pertin-

ent v a r i a b l e s . (3) D i a l y s i s nurses were g i v e n a questionnaire

i n which they s t a t e d which f a c t o r s they used to r a t e a

patient w e l l f u n c t i o n i n g or p o o r l y f u n c t i o n i n g . (4) Nine

p a t i e n t s were i n t e r v i e w e d u s i n g a s e m i - s t r u c t u r e d interview

schedule to o b t a i n t h e i r p e r c e p t i o n o f t h e i r needs and

l e v e l of well being. (5) A p r e l i m i n a r y t o o l was constructed

and submitted to a p a n e l o f e x p e r t s f o r v a l i d a t i o n .

The f i n a l instrument was t e s t e d f o r reliability

u s i n g f o u r p a i r s of nurses a s s e s s i n g f i v e p a t i e n t s each.

II. SAMPLE

The nine s e m i - s t r u c t u r e d i n t e r v i e w s were done on

3 p a t i e n t s r a t e d by the s t a f f as having made a poor a d j u s t -

ment to home h e m o d i a l y s i s , three having made an adequate

adjustment, and three h a v i n g made an e x c e l l e n t adjustment.

27
 28

For r e l i a b i l i t y t e s t i n g 20 p a t i e n t s were selected

from a group who met the f o l l o w i n g c r i t e r i a : over 16 years

o f age, l i v i n g i n K i n g o r Snohomish C o u n t i e s , E n g l i s h

speaking, on d i a l y s i s a t l e a s t s i x months, and not scheduled

f o r a t r a n s p l a n t w i t h i n s i x months o f the assessment.

The p a t i e n t sample c o n s i s t e d o f e i g h t females and

twelve males. The p a t i e n t s 1 consent to p a r t i c i p a t e in

the study was o b t a i n e d . A l l patients had r e c e i v e d t h e i r

home d i a l y s i s t r a i n i n g at the Northwest Kidney C e n t e r ,

Seattle, Washington.

III. CONSTRUCTION OF THE PRELIMINARY TOOL

Data G a t h e r i n g

V a r i a b l e s e l u c i d a t e d i n the h e m o d i a l y s i s literature

are l i s t e d i n Chapter I I - Review o f the L i t e r a t u r e . Each

of these v a r i a b l e s were c o n s i d e r e d f o r i n c l u s i o n i n the

tool.

A l i s t o f p a t i e n t problems and parameters l o o k e d

a t by the s t a f f were obtained by examining twenty p a t i e n t

records. These were found to be almost i d e n t i c a l to the

problems o u t l i n e d i n the literature.

Nine p a t i e n t s were i n t e r v i e w e d u s i n g a s e m i - s t r u c t u r e d

interview schedule; Three o f these p a t i e n t s had been r a t e d

by the s t a f f as h a v i n g made a poor adjustment to maintenance

home h e m o d i a l y s i s , three having made a f a i r adjustment,

and three h a v i n g made an e x c e l l e n t adjustment;

Data from these i n t e r v i e w s were examined and a list

 29

of problems and problem statements was c o m p i l e d . Common

problems shared by p a t i e n t s r a t e d as poor and not seen i n

p a t i e n t s of the o t h e r r a t i n g s were e s p e c i a l l y noted.

The most s t r i k i n g d i f f e r e n c e s among these groups

of p a t i e n t s were i n the f o l l o w i n g areas*

1.. Time Spent i n P r o d u c t i v e A c t i v i t y . A l l three

p a t i e n t s r a t e d as poor a d j u s t o r s by the s t a f f were un-

employed and d i s c l a i m e d p r o d u c t i v e a c t i v i t y except f o r one

o r two hours d a i l y . In c o n t r a s t , a l l three p a t i e n t s rated

excellent by the s t a f f were employed f u l l time and claimed

normal l e v e l s of a c t i v i t y . Of those p a t i e n t s r a t e d as fair

a d j u s t o r s one was employed f u l l time, one p a r t time and the

t h i r d claimed a f u l l schedule of housework,

2, General Outlook and R e l a t i o n s h i p w i t h F r i e n d s

and F a m i l y , The three p a t i e n t s i n the p o o r l y a d j u s t e d

category made such statements as thesei

"I guess I'm hard to l i v e w i t h now, I'm i n a bad

mood most o f the t i m e , "

"I get up i n the morning l o t s o f times and wonder

why I b o t h e r , "

" I hate being on the machine and c a n ' t seem to get

my mind on a n y t h i n g e l s e . "

" T h i s i s a h e l l o f a way to l i v e . "

"Nobody understands what you have to go t h r o u g h . "

"People d o n ' t l i k e to bother with you when y o u ' r e

sick."

"I d o n ' t know anyone my own age and I c a n ' t meet

anyone because they would t h i n k I was a freak on
t h i s machine."

"People expect too much of you and d o n ' t realize

you're s i c k . "
In c o n t r a s t patients i n the adequate c a t e g o r i e s made these

statements s
" I ' m down i n the dumps sometimes but I t h i n k t h a t ' s
j u s t n a t u r a l when you have something l i k e t h i s ; "

" I ' m j u s t t h a n k f u l to God t h a t they have the

machine•"

"Our f r i e n d s have been wonderful, I d o n ' t know what

we would do without them;"

"My wife s t i l l g e t s p r e t t y nervous but we manage

and there are l o t s of good t i m e s . "

"When t h i n g s d o n ' t go w e l l with the machine we

k i n d o f get tense and y e l l a t each other but
^mostly we get a l o n g O . K . "

The three p a t i e n t s i n the e x c e l l e n t category made these and

other statementss

"Of course i f I had a c h o i c e , I wouldn't go on

d i a l y s i s but since I d o n ' t , I j u s t regard i t
l i k e b r u s h i n g my t e e t h - something you have to
do - and I go on about my b u s i n e s s ; "

"We j u s t d o n ' t l e t i t bother us - i t ' s one o f

those t h i n g s you have to f i n d time f o r i n your
l i f e and t h a t ' s t h a t . "

"My f a m i l y i s g r e a t - they p i t c h i n and h e l p and

are always there p u l l i n g f o r me."

"We've had to g i v e up some t h i n g s we enjoyed

t o g e t h e r but we have been even c l o s e r as a
f a m i l y s i n c e I s t a r t e d on d i a l y s i s - we r e a l i z e d
how u n p r e d i c t a b l e l i f e can b e ; "

"Everyone, my boss, f a m i l y , f r i e n d s have been

t e r r i f i c - they want to do e v e r y t h i n g they can
f o r us - we r e a l l y d o n ' t need a n y t h i n g but
i t ' s n i c e to know t h e y ' r e t h e r e , "

A q u e s t i o n n a i r e was submitted to e l e v e n dialysis

nurses. A n a l y s i s o f t h e i r statements concerning p a t i e n t s

produced the f o l l o w i n g l i s t :
 31

Table 1 Well Adjusted Patient

No; of nurses
who i n c l u d e d
t h i s item (11
Factors Leading to Good P a t i e n t Rating nurses t o t a l )

O p t i m i s t i c and cheerful 8
Determined to l e a r n - h i g h l y motivated 7
Leads a c t i v e l i f e - community i n v o l v e -
ment, o u t s i d e i n t e r e s t 6
Well occupied leisure 3
Adequate dialysis 3
Infrequent backup d i a l y s i s . 1

Works f u l l time 3
Good r e l a t i o n s h i p with h e l p e r -
e x c e l l e n t f a m i l y support 8

Table 2 P o o r l y Adjusted Patient

No, of nurses
who i n c l u d e d
t h i s item (11
Factors Leading to Poor P a t i e n t Rating nurses t o t a l )

H i s t o r y o f problem w i t h c i r c u l a t i o n
access 3
General m e d i c a l complications 3
F a i l u r e to d i a l y z e or f o l l o w d i e t
a c c o r d i n g to p r e s c r i b e d regimen 5
Does not work 1

No o u t s i d e interests 6
Does not a c t i v e l y participate
i n own care 4
Spouse or h e l p e r r e l a t i o n s h i p poor 7
Anxiety-tension-fear 2
Frequent backup dialysis 2
 32
R a t i o n a l e f o r I n c l u s i o n o f and E x c l u s i o n o f Items i n the T o o l

M a t e r i a l from the f o u r s o u r c e s , the h e m o d i a l y s i s

literature review, p a t i e n t r e c o r d examination, dialysis

nurses1 questionnaire and the nine p a t i e n t i n t e r v i e w s were

combined and c o n s i d e r e d f o r i n c l u s i o n i n the t o o l . The

c r i t e r i a used f o r i n c l u s i o n were: (1) a r a t i n g can be

o b t a i n e d e c o n o m i c a l l y , (2) a r a t i n g can be obtained with

little inconvenience to the p a t i e n t , (3) a r a t i n g can be

obtained q u i c k l y , (4) a r a t i n g may be o b t a i n e d by an object-

i v e q u a n t i f i c a t i o n of an item o r by a p e r c e p t i o n of the

patient, and (5) a r a t i n g can be made on the b a s i s of a

s t r a i g h t - f o r w a r d q u e s t i o n with no hidden meaning.

All items on the p h y s i o l o g i c a l assessment were

i n c l u d e d because these problems were d i s c u s s e d i n the

d i a l y s i s l i t e r a t u r e and were found to be f r e q u e n t l y

mentioned i n the p a t i e n t r e c o r d s . Many of them were

mentioned by the p a t i e n t s as symptoms which they e x p e r i e n c e d .

Wherever the q u e s t i o n i s not one which can be s e t t l e d by

measurement o r o b s e r v a t i o n , the p a t i e n t ' s perception of

the problem i s sought. For example the item on sexual

f u n c t i o n i n g seeks to determine i f the p a t i e n t p e r c e i v e s a

problem i n t h i s area r a t h e r than to determine any a c t u a l

s t a t e of sexual potency.

In some i n s t a n c e s much more accurate measurements

o f p h y s i o l o g i c a l f u n c t i o n i n g are a v a i l a b l e but they do not

meet the c r i t e r i a of b e i n g economical and convenient f o r

the p a t i e n t . For example, a nerve conduction time i s a

 33
f a r more s e n s i t i v e measure o f degree of neuropathy than

the assessment p r o v i d e d f o r by the t o o l . The nerve c o n d u c t i o n

time, however, i s expensive and uncomfortable f o r the patient

and i s u s u a l l y a v a i l a b l e only at l a r g e medical centers.

The items under m i s c e l l a n e o u s symptoms i n the t o o l ,

that i s : i t c h i n g , nausea and v o m i t i n g , headache, dizziness,

muscle cramps, constipation, c h i l l s and f e v e r , are not

q u a n t i f i e d because the degree to which the symptom i s a

problem seems to depend more on the p a t i e n t ' s perception

than the a c t u a l number of times i t occurs•

The t e c h n i c a l a b i l i t y assessment would doubtless

be much more accurate i f d i r e c t observations were made and

r e c o r d e d as i s done when a p a t i e n t ' s ability is being

assessed i n h i s home d i a l y s i s training period. Again, this

is extremely time consuming and e x p e n s i v e ; The b r i e f

assessment b u i l t i n t o the t o o l i s designed to show the

patient's p e r c e p t i o n of h i s a b i l i t y as w e l l as the objective

number of times he a c t u a l l y encounters problems o r must

c a l l for assistance.

The s o c i a l - p s y c h o l o g i c a l adjustment of the p a t i e n t is

f a r more d i f f i c u l t to measure than the p h y s i o l o g i c a l or the

t e c h n i c a l adjustment because the d e t e r m i n a t i o n o f what

constitutes good, adequate, and poor social-psychological

adjustment i s not so r e a d i l y apparent;

Hours spent i n p r o d u c t i v e a c t i v i t y was noted i n

the p a t i e n t i n t e r v i e w s as b e i n g a f a c t o r which was clearly

different i n those p a t i e n t s who had been r a t e d as poorly

 34

adapted by the s t a f f and those who had been r a t e d as well-

adapted. A l s o i t seemed a d v i s a b l e to determine i f there

had been a d i s t i n c t change i n p r o d u c t i v e a c t i v i t y s i n c e

their illness;

No o u t s i d e i n t e r e s t s had been mentioned by s i x o f

the nurses when asked to d e s c r i b e the p o o r l y adjusted

patient; S i x nurses used the terms "community i n v o l v e m e n t " ,

and "many o u t s i d e i n t e r e s t s " , to d e s c r i b e the w e l l adjusted

patient.

Role changes and f e e l i n g s d f r o l e l o s s i h a d been

mentioned i n the l i t e r a t u r e . I t was decided to simply ask

the p a t i e n t h i s p e r c e p t i o n o f h i s a b i l i t y to f u n c t i o n as a

husband, f a t h e r , w i f e , mother, or f a m i l y member s i n c e measur-

i n g r o l e change and f e e l i n g s o f r o l e l o s s i n depth would

r e q u i r e e x t e n s i v e p r o b i n g with the p a t i e n t . Identifying

some f e e l i n g s o f r o l e changes was f e l t to be adequate i n

a s s e s s i n g the p a t i e n t ' s needs f o r f o l l o w up c a r e .

Statements o f g e n e r a l f e e l i n g s made by the patients

i n the poor c a t e g o r i e s and the e x c e l l e n t c a t e g o r i e s were

so c h a r a c t e r i s t i c a l l y d i f f e r e n t t h a t t h i s dimension seemed

to be v e r y important to measure i n a s s e s s i n g the patient's

l e v e l o f w e l l b e i n g and need f o r f o l l o w up c a r e . Several

statements i n the s o c i a l - p s y c h o l o g i c a l assessment were

compiled from the a c t u a l statements made by p a t i e n t s .

The two items mentioned most o f t e n by the nurses

i n r a t i n g a p a t i e n t w e l l f u n c t i o n i n g were an a t t i t u d i n a l

statement o f o p t i m i s t i c and c h e e r f u l , and good f a m i l y

 35
r e l a t i o n s h i p s and s u p p o r t ; E i g h t o f the e l e v e n nurses

named these two f a c t o r s ; A l s o these g e n e r a l f e e l i n g s of: :

b e i n g i n a good o r bad mood, o f f e e l i n g accepted o r r e j e c t e d

by o t h e r s and o f h a v i n g people to h e l p and support them were

mentioned f r e q u e n t l y by p a t i e n t s i n a l l three categories

o f adjustment. Nine q u e s t i o n s on the assessment form are

designed to r a t e the p a t i e n t on t h i s k i n d o f d i m e n s i o n .

F a i l u r e to f o l l o w medical regimen had been mentioned

by 5 nurses as a f a c t o r i n r a t i n g the p o o r l y a d j u s t e d patient;

T h i s dimension i s measured by the p h y s i o l o g i c a l data but one

q u e s t i o n a s k i n g the p a t i e n t how comfortably he f e l t he could

l i v e with h i s r e s t r i c t i o n s was i n c l u d e d i n the s o c i a l -

p s y c h o l o g i c a l assessment,

IV. THE RATING SCALE

A three p o i n t n u m e r i c a l r a t i n g s c a l e was d e v i s e d

with no w e i g h t i n g o f i n d i v i d u a l i t e m s ; A l l measurements

and p a t i e n t p e r c e p t i o n s were d i v i d e d i n t o the c a t e g o r i e s of

e x c e l l e n t , adequate, and poor designated r e s p e c t i v e l y by the

numbers one, two, and t h r e e . A r a t i n g o f one would i n d i c a t e

the b e t t e r adapted p a t i e n t and three the poorer adapted one,

A maximum t o t a l score o f 144 would i n d i c a t e the p a t i e n t with

the g r e a t e s t number o f needs and a minimum t o t a l score o f 47

would i n d i c a t e the p a t i e n t w i t h the l e a s t number o f needs.

However any item r e c e i v i n g a three score would i n d i c a t e an

area i n which the p a t i e n t had some need f o r f o l l o w up care

o r f u r t h e r assessment;
 36

V. VALIDATION

The p r e l i m i n a r y t o o l was submitted to a p a n e l o f

f i v e e x p e r t s which i n c l u d e d f o u r d i a l y s i s nurses whose

experience in dialysis n u r s i n g ranged from f i v e to nine

y e a r s and one p h y s i c i a n who had worked i n t e n s i v e l y with

dialysis patients for six years; Each o f these experts

agreed t h a t the t o o l had content v a l i d i t y .

VI. PRE-TEST

A p r e - t e s t was conducted on two p a t i e n t s to

determine communication d i f f i c u l t i e s with any of the

questions; No problems were encountered,

VII. RELIABILITY TESTING

Pour p a i r s o f nurses used the v a l i d a t e d t o o l to

separately assess f i v e patients each; The r a t i n g s c a l e was

e x p l a i n e d v e r b a l l y as w e l l as i n w r i t i n g to each n u r s e ;

The t w o - t a i l e d t e s t was chosen to t e s t the independence

o f the t o o l from the e v a l u a t o r . A .05 l e v e l o f significance

was used.
 CHAPTER IV

ANALYSIS OF THE DATA

I. VALIDITY TESTING

The p r e l i m i n a r y t o o l was submitted to f i v e experts;

four d i a l y s i s nurses whose experience in dialysis ranged from

f i v e to nine y e a r s and one p h y s i c i a n who had worked i n t e n s -

i v e l y with d i a l y s i s patients for six years.

The experts agreed t h a t the t o o l would measure

important d i f f e r e n c e s i n patients which would be sufficient

to determine t h e i r need f o r f o l l o w up c a r e .

One q u e s t i o n was m o d i f i e d at the s u g g e s t i o n o f two

o f the n u r s e s i T h i s was r e g a r d i n g p a r t i c i p a t i o n i n s o c i a l

or community o r g a n i z a t i o n s and a c t i v i t i e s which asked the

patient to d e s c r i b e h i s p a r t i c i p a t i o n as o f t e n , occasionally

or r a r e l y ; I t was suggested t h a t t h i s be a l t e r e d to ask

whether h i s p a r t i c i p a t i o n was about the same as, l e s s than,

o r much l e s s than before h i s need f o r h e m o d i a l y s i s . This

was f e l t to be more meaningful than the o r i g i n a l wording

because some p a t i e n t s ' l a c k o f p a r t i c i p a t i o n would be a

life style r a t h e r than an e f f e c t of t h e i r illness,

II. RELIABILITY TESTING

Four p a i r s o f nurses s e p a r a t e l y assessed each of

five patientsi A t o t a l o f twenty p a t i e n t s were a s s e s s e d ;

37
 38
The two t a i l e d *fe t e s t was used to t e s t the hypothesis that

the assessment t o o l p r o v i d e s a r a t i n g which i s independent of

the e v a l u a t o r . I t was s i g n i f i c a n t at the .05 l e v e l .

Table 3 P a i r e d Nurses Scores of F u n c t i o n i n g L e v e l of

P a t i e n t and D i f f e r e n c e s i n Nurse Scores

Patient Score 3 Score Difference

Number Nurse A Nurse B A - B

1 64 64 0
2 85 80 5
3 52 52 0
i 74 75 -1
4
5 69 73 -4
6 58 58 0

7 65 66 -1
8 106 108 -2
9 66 67 -1
10 80 80 0
11 59 59 0
12 82 83 -1.
13 61 61 0
14 51 51 o •

15 6l 63 -2
16 55 56 -1

17 87 83 4
18 62 ; 62' 0

19 66 67 -1
20 88 89 -1
 39

Table 4 Statistical Treatment

The Test: I f the assessment t o o l i s independent of

the e v a l u a t o r then the d i f f e r e n c e A - B->0,

but i f the t o o l i s sensitive to interpreta-

t i o n by an i n d i v i d u a l n u r s e , then |:A - B\ ""^9

constant.

The Hypothesis: The mean of the d i f f e r e n c e = x A -}B = 0 .

If this is true, then the t o o l i s independ-

ent o f the evaluator.

The Samples The number o f data p o i n t s , was 2 0 ,

The mean x was 0 . 3 0 0 . The Standard

d e v i a t i o n 5 * W£>-s 1 . 9 2 2 ,

The standard d e v i a t i o n o f the means of the samples,

5_ , i s g i v e n by S_ = JL*— = 0.430

The v a r i a b l e -k. f o r the t w o - t a i l e d =<t t e s t i s given

by: * - y -«/to.

Where f o r t h i s hypothesis /\& =0

4 . = -0.300 = _ 0.698
I n s e r t i n g the above v a l u e s we o b t a i n 0.430

From the t a b l e f o r the t w o - t a i l e d *f t e s t with = 20

and at the . 0 5 l e v e l *fc i s g i v e n b y :

± (190.025) = 2.093
 40

The r e s u l t is i l l u s t r a t e d by the f o l l o w i n g :

t e s t s t a t i s t i c = -0.698

Since the c a l c u l a t e d value of falls well within

the acceptable range the h y p o t h e s i s t h a t the t o o l

is independent of the e v a l u a t o r i s verified.

III. ANALYSIS OF RESULTS OF ASSESSMENT

The mean score: of the twenty p a t i e n t s was 69.5•

Twelve of the twenty p a t i e n t s had scores below the mean

while the remaining e i g h t p a t i e n t s had s c o r e s above the mean.

The age range of the twelve p a t i e n t s s c o r i n g below

the mean was 17 years to 60 y e a r s . The mean age o f this

group was 4 l y e a r s . The age range of the e i g h t patients

s c o r i n g above the mean was 21 years to 6 l y e a r s . The mean

age of t h i s group was 43.5 years.

 41

The lower s c o r i n g group had a range o f months o f

dialysis from 6 months to 71 months. The mean l e n g t h of

d i a l y s i s o f t h i s group was 26.5 months. The h i g h e r s c o r i n g

group had been on d i a l y s i s from 8 months to 68 months. The

mean l e n g t h o f d i a l y s i s was 31 months. This indicates that

age and l e n g t h of d i a l y s i s were not f a c t o r s which accounted

for differences i n the two groups.

The above i n f o r m a t i o n i s i l l u s t r a t e d i n Figures 1,

2, and 3.

The d i s t r i b u t i o n of low scores between the two groups

of p a t i e n t s on the p r e - d i a l y s i s c r e a t i n i n e , BUN, Serum

albumin, 24 hour u r i n e volume and u s u a l p r e - d i a l y s i s blood

p r e s s u r e was q u i t e u n i f o r m . For example, 50 per cent o f

those e i g h t p a t i e n t s whose t o t a l scores f e l l above the mean

s c o r e d a number one on the item o f i n t r a d i a l y s i s weight g a i n ,

while o n l y 40 per cent of those twelve p a t i e n t s whose total

scores f e l l below the mean scored a number one on t h i s i t e m .

This indicates t h a t the d i f f e r e n c e s measured i n p a t i e n t s did

not f a l l i n the category o f Adequacy of d i a l y s i s and n u t r i t i o n -

al s t a t u s i n t h i s p a r t i c u l a r group o f patients.

C i r c u l a t i o n access problems accounted f o r some

difference i n the two groups. Of the twelve lower s c o r i n g

patients, 25 per cent had problems with c i r c u l a t i o n access

c o n t r a s t i n g with 62 per cent of the e i g h t h i g h e r s c o r i n g

patients.

The d i s t r i b u t i o n of low and h i g h scores on the item

o f Bone S t a t u s , both i n X-ray evidence and c l i n i c a l symptoms,

was not s i g n i f i c a n t l y d i f f e r e n t between the two groups.

 42

10 -|

8
Number
7
of
6
Scores
5

2_

,:1

—i—\—!—| ' | i | 1 1
1 1
1 1
\ * I

1 2 3 4 5 6^ 7 8 9 10
Group

F i g u r e 1 Nurse A Scores
Grouped in Interval Size of 1U«4

For t h i s set of scores the mean i s 6 9 . 5 5 ; the

v a r i a n c e i s 194,2475I and the standard d e v i a t i o n

is 13.93727, The group s i z e i s 14,4

 4 3

10 „

6
Number

of 5
Scores
4

2 H

4_J_L_
1 2 3 8 9 10

Group

F i g u r e 2 Nurse B Scores
Grouped i n Interval Size of 14«U

For t h i s s e t o f s c o r e s the mean i s 69„85; the

v a r i a n c e i s 189•>3275; and the standard d e v i a t i o n

is 13.75963. The group s i z e i s l 4 4 .

0
 44

10 -

9 -

8 -

7 „

Number 6 _
of
5 -
Scores
4 _

3 -

2 _

1 -

' I 1M
1
1
I
2 8 9 10

Group

F i g u r e 3 Mean Scores
Grouped In Interval Size of 14.U

In t h i s set the mean i s 6 9 . 7 ; the v a r i a n c e is

190.91; and the standard d e v i a t i o n i s 13,81702.

The group s i z e i s 14.4,

 45
Cardiac symptoms accounted f o r a d i f f e r e n c e i n the

groups. E l e v e n of the twelve p a t i e n t s s c o r i n g below the mean

d i s c l a i m e d shortness o f breath and chest p a i n while a l l eight

o f the o t h e r group claimed some shortness of breath and f o u r

of the e i g h t claimed moderate to severe chest pain.

E l e v e n of the twelve low s c o r e r s had no evidence o f

neuropathy as judged by the three items i n c l u d e d i n t h a t

assessment. S i x o f the other e i g h t p a t i e n t s had moderate

impairment and one had severe impairment.

Dissatisfaction with sexual f u n c t i o n i n g was

characteristic of 75 per cent of the h i g h e r s c o r i n g patients,

while only 25 per cent of the lower s c o r i n g p a t i e n t s had

this complaint.

Response to the s l e e p i n g p a t t e r n s item showed 58 per

cent of the twelve lower s c o r i n g p a t i e n t s had no d i f f i c u l t y

s l e e p i n g while 42 per cent had moderate difficulty. Only 25

per cent of the h i g h e r s c o r i n g p a t i e n t s had no d i f f i c u l t y

s l e e p i n g while 50 per cent had moderate difficulty, and 25 ;?

per cent had severe d i f f i c u l t y .

The d i s t r i b u t i o n of h i g h and low responses on the

miscellaneous symptoms was not s i g n i f i c a n t l y different

between the two groups.

Of the f i v e items on the t e c h n i c a l a b i l i t y a s s e s s -

ment, only two showed s i g n i f i c a n t differences i n the two

groups. These were the number of t e c h n i c i a n . : .consultations

r e q u i r e d f o r machine malfunctions and the degree of c o n f i d -

ence the p a t i e n t had i n h i s own a b i l i t y to handle dialysis

procedures. E i g h t y per cent of the twelve lower s c o r i n g

patients r a r e l y r e q u i r e d t e c h n i c i a n c o n s u l t a t i o n while

7 5 per cent of the e i g h t h i g h e r s c o r i n g p a t i e n t s required

t e c h n i c i a n c o n s u l t a t i o n three to s i x times y e a r l y and o v e r .

One hundred per cent o f the twelve lower s c o r e r s d e c l a r e d a

f e e l i n g o f confidence i n h a n d l i n g d i a l y s i s procedures. Only

2 5 per cent o f the h i g h e r s c o r e r s claimed to f e e l confident

while 5 0 per cent f e l t somewhat uneasy and the o t h e r 2 5 per

cent f e l t uneasy most o f the t i m e .

The s o c i a l - p s y c h o l o g i c a l data accounted f o r the

greatest difference between the two groups o f p a t i e n t s . Of

the twelve p a t i e n t s s c o r i n g l e s s than the mean, 1 0 0 per cent

had p r o d u c t i v e a c t i v i t y over three hours d a i l y and 8 0 per

cent o f these had p r o d u c t i v e a c t i v i t y over s i x hours d a i l y .

Of the e i g h t h i g h e r s c o r i n g p a t i e n t s o n l y 3 7 per cent had

p r o d u c t i v e a c t i v i t y more than three hours d a i l y .

Family r e l a t i o n s h i p s were s a i d to be harmonious

and s a t i s f y i n g by 8 0 per cent o f the 12 lower s c o r e r s .

Seventy-five per cent of the h i g h e r s c o r e r s s t a t e d f a m i l y

relationships were marked by t e n s i o n and misunderstandings

or were s e v e r e l y dissatisfying.

Recreational a c t i v i t i e s were s a i d to be enjoyed

o f t e n by 9 0 per cent o f the twelve lower s c o r e r s while the

remaining 10 per cent enjoyed them o c c a s i o n a l l y . Thirty-

seven and a h a l f per cent of the h i g h e r s c o r e r s enjoyed

these a c t i v i t i e s often, while 2 5 per cent d i d o c c a s i o n a l l y ,

and the remaining 3 7 • 5 per cent claimed to r a r e l y enjoy

 47

recreational activities.

All o f the twelve lower s c o r e r s s a i d they had people

to t u r n to f o r h e l p when they needed i t while only 60 per

cent o f the h i g h e r s c o r e r s felt t h i s way. Moderate a n x i e t y

on the p a r t o f f a m i l y members as a consequence o f the patient's

d i a l y s i s was s a i d to be present by 25 per cent o f the lower

scoring patients. S e v e n t y - f i v e per cent o f the h i g h e r

scoring patients claimed moderate to severe a n x i e t y on the

p a r t o f f a m i l y members.

When the p a t i e n t s were asked about t h e i r p e r c e i v e d

a b i l i t y to f u n c t i o n i n t h e i r f a m i l y r o l e s , 92 per cent o f

the lower s c o r e r s felt they c o u l d f u n c t i o n as w e l l o r b e t t e r

than before t h e i r i l l n e s s . S i x t y per cent o f the h i g h e r

scorers felt l e s s able to f u n c t i o n i n t h e i r normal roles

than p r i o r to t h e i r illness.

All o f the p a t i e n t s i n the lower s c o r i n g group felt

generally optimistic i n spite of t h e i r r e s t r i c t i o n s . Seventy

per cent o f the h i g h e r s c o r e r s , however, chose to say they

felt down i n the dumps and somewhat f e a r f u l about the future

as t h e i r response to t h i s i t e m .

All o f the p a t i e n t s i n the lower s c o r i n g group s a i d

they f e l t comfortable about d i s c u s s i n g t h e i r d i a l y s i s

when meeting new people o r t a l k i n g with acquaintances if the

subject should a r i s e . Two o f the e i g h t h i g h e r s c o r e r s said

they f e l t somewhat uncomfortable doing so and one s a i d he

would p r e f e r to keep i t a s e c r e t as h i s i l l n e s s made him f e e l

unacceptable to others.
 48

Comparison o f percentage scores on s e l e c t e d

variables is shown i n Figure 4.

Sleep with
no d i f f i c u l t y x
y

Harmonious
Family X
Relationships
y

Confident
handling X
dialysis
procedure y

Recreational
Activities X
Enjoyed
Often y

Productive
Activity X
Over 6
hours/day y

' 1 M > M 1 ' \ * \ > \ \ \ \ l -4—

10 20 30 4o 50 6o 70 8o 90 100

Per Cent

Figure 4 Comparison of Percentage Scores on S e l e c t e d

Variables of Group x ( T o t a l score f e l l below

the mean) and Group y ( t o t a l score f e l l above

the mean)
 CHAPTER V

SUMMARY, CONCLUSIONS, AND RESEARCH IMPLICATIONS

I, SUMMARY

The purpose of t h i s study was to c o n s t r u c t a nurs-

ing assessment t o o l to i d e n t i f y the home h e m o d i a l y s i s

p a t i e n t ' s l e v e l of f u n c t i o n i n g and need f o r f o l l o w up care.

Items which would r a t e the p a t i e n t on p h y s i o l o g i c a l and

social-psychological variables as w e l l as technical abilities

were i n c l u d e d .

Data about those v a r i a b l e s important to measure were

o b t a i n e d from s e v e r a l s o u r c e s ; review o f h e m o d i a l y s i s litera-

ture, examination o f p a t i e n t records, questionnaire to

dialysis nurses and s e m i - s t r u c t u r e d i n t e r v i e w s with nine

patients.

Items were i n c l u d e d i f a r a t i n g met the c r i t e r i a of

b e i n g obtained e c o n o m i c a l l y , q u i c k l y , o b j e c t i v e l y , directly,

and with l i t t l e inconvenience to the patient.

A three p o i n t n u m e r i c a l r a t i n g s c a l e was used with

no w e i g h t i n g o f i n d i v i d u a l i t e m s . A one score indicates

the most adequate l e v e l o f f u n c t i o n i n g and a three score

the l e a s t adequate. I n d i v i d u a l scores are t a l l i e d to obtain

a maximum t o t a l score of 144 i n d i c a t i n g the p a t i e n t w i t h the

g r e a t e s t needs o r a minimum score o f 4? i n d i c a t i n g the patient

w i t h the l e a s t needs.

49
 50

Five d i a l y s i s experts i n c l u d i n g f o u r nurses and

one p h y s i c i a n examined the t o o l . Face v a l i d i t y was e s t a b -

l i s h e d f o r d e t e r m i n i n g the adequacy of the p a t i e n t ' s level

o f f u n c t i o n i n g and h i s need f o r f o l l o w up care services.

A r e l i a b i l i t y t e s t was conducted with f o u r p a i r s of

nurses u s i n g the v a l i d a t e d t o o l to assess twenty patients.

R e l i a b i l i t y was v e r i f i e d when the two t a i l e d •ir'test, used

to t e s t whether or not the r a t i n g s obtained with the

assessment t o o l were independent o f the nurse obtaining

the r a t i n g , was s i g n i f i c a n t a t the .05 level.

A n a l y s i s of the t o t a l scores showed a mean score of

69»5« Twelve p a t i e n t s * t o t a l scores f e l l below the mean

while e i g h t p a t i e n t s * total scores f e l l above the mean.

These two groups o f p a t i e n t s were compared on the several

dimensions w i t h i n the t o o l . The g r e a t e s t areas o f difference

were i n the s o c i a l - p s y c h o l o g i c a l v a r i a b l e s and i n two areas

of t e c h n i c a l assessment. Differences in physiological

variables as a whole were not as pronounced. Patients

whose s c o r e s f e l l above the mean tended to have l e s s con-

fidence i n t h e i r a b i l i t y to handle d i a l y s i s procedures,

r e q u i r e more t e c h n i c a l b a c k i n g , have more problems with

c i r c u l a t i o n access, sleep l e s s w e l l , have f e e l i n g s of role

dysfunction, engage i n l e s s p r o d u c t i v e a c t i v i t y , and enjoy

recreational activities l e s s o f t e n than the group whose

total scores f e l l below the mean.

D i s t r i b u t i o n o f scores on blood c h e m i s t r i e s , twenty-

f o u r hour u r i n e volume, bone s t a t u s , intradialysis weight

gain, i n c i d e n c e of blood l e a k s , and f a i l u r e of d i a l y z e r

to t e s t out was not s i g n i f i c a n t l y d i f f e r e n t i n the two groups

of patients.

II. CONCLUSIONS

An assessment t o o l has been developed with good

r e l i a b i l i t y and face v a l i d i t y . More extensive validity

testing i s r e q u i r e d to demonstrate i f the c a t e g o r i e s i n t o

which the p a t i e n t f a l l s , i n d i c a t i n g h i s need f o r f o l l o w

up care are a p p r o p r i a t e i n most c a s e s .

More work needs to be done to e l i m i n a t e n o n - r e l e v a n t

items, that i s items which do not c o n t r i b u t e to showing

differences i n the p a t i e n t s . I f t h i s were done t h e n ,

theoretically, the mean c o u l d be made to r e p r e s e n t the

average p a t i e n t and g r e a t e r than one standard d e v i a t i o n

from the mean c o u l d be used as the c r i t e r i a f o r r a t i n g a

patient's adjustment as e x c e l l e n t or very p o o r . Since only

one p a t i e n t score among the h i g h e r scores i n t h i s sample

was o u t s i d e one standard d e v i a t i o n , there was not an

adequate base from which to do t h i s .

Assessing patients with the t o o l r e q u i r e d about

twenty minutes per p a t i e n t . P a t i e n t s were r e c e p t i v e to

the q u e s t i o n s and answered them c a r e f u l l y and t h o u g h t f u l l y .

Often the p a t i e n t gave more i n f o r m a t i o n than was requested.

This indicates the t o o l has good p o s s i b i l i t i e s for expansion

i n t o a comprehensive assessment t o o l from which a n u r s i n g

care p l a n c o u l d be developed;
 52

III. RESEARCH IMPLICATIONS

Now t h a t r e l i a b i l i t y o f t h i s assessment t o o l has

been v e r i f i e d i t should be used to assess a statistically

significant sample o f h e m o d i a l y s i s p a t i e n t s . From t h i s

assessment the most important v a r i a b l e s c o u l d be i d e n t i f i e d .

V a l i d i t y t e s t i n g i s a problem s i n c e there i s no independent

standard a g a i n s t which to measure the p a t i e n t ratings.

There i s l i t t l e d i f f i c u l t y , however, i n e s t a b l i s h i n g by

r e p o r t s o f the s t a f f , those p a t i e n t s who f a l l at the

extreme ends o f the continuum o f poor adjustment to

e x c e l l e n t adjustment. I f d e v i a t i o n s from the mean are

a good c r i t e r i a then t h i s t e s t o f v a l i d i t y would be use-

ful. One c o u l d perhaps then assume t h a t the t o o l would be

equally sensitive i n the middle a r e a s .

T h i s assessment t o o l i s not i n t e n d e d , i n i t s

p r e s e n t form, to be used as an instrument from which n u r s -

i n g care p l a n s are d e v e l o p e d . It is intended as an instrument

to a s s i s t the nurse i n e v a l u a t i n g which p a t i e n t s most need

f u r t h e r assessment and f o l l o w up c a r e . Much more work

i s necessary i n the areas o f w e i g h t i n g i n d i v i d u a l items

and e x c l u d i n g n o n - r e l e v a n t i t e m s .
BIBLIOGRAPHY

53
 BIBLIOGRAPHY

A. BOOKS

Bonney, V i r g i n i a , and June Rothberg. Nursing Diagnosis and

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Gutch, C , F , and Martha S t o n e r . Review o f Hemodialysis f o r
Nurses and D i a l y s i s P e r s o n n e l . S a i n t L o u i s » The C. V .
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Hampers, Constantine and Eugene Schupak. Long-Term Hemo-

d i a l y s i s . New York: Grune and S t r a t t o n , 1967.

Little, Dolores E . and D o r i s C a r n e v a l i . Nursing Care P l a n n -

i n g . P h i l a d e l p h i a : J . B . L i p p i n c o t t Company, 1969.

Pendras, J e r r y and G . S t i n s o n . The Hemodialysis Manual.

S e a t t l e , 1969.

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taneous A r t e r i a l - V e n o u s F i s t u l a i n Home H e m o d i a l y s i s , "
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A y d e l o t t e , M y r t l e K i t c h e l l . "The Use of P a t i e n t Welfare as a

C r i t e r i o n Measure," Nursing Research, v o l . X I , n o . 1,
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Baillod, R. A . , et a l " O v e r n i g h t Hemodialysis i n the Home,"

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54
 55
Blagg, C . R . , R. 0 . Hickman, J . W, Eschbach, and B. H . S c r i b n e r .
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ember, 1970), pp 1126 - 1131.

Blumberg, A . and K . G i g e r , L e t t e r to the E d i t o r re Hepa-

t i t i s and H e m o d i a l y s i s , New England J o u r n a l of
M e d i c i n e , v o l . CCXXCVII, n o . 12, (September 17,
1970), pp 657 - 658.

Brand, L . and N . I . Kamarita, " A d a p t i n g to Long-Term Hemo-

D i a l y s i s , " American J o u r n a l of N u r s i n g , v o l . 66,
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Compty, C . M . , D. McDade and M. Kaye, "Anemia and Iron

Requirements o f P a t i e n t s Treated by Maintenance
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Cummings, Jonathon W, " H e m o d i a l y s i s : The P r e s s u r e s and How

P a t i e n t s Respond," American J o u r n a l of N u r s i n g , v o l .
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Curtis, K . , et a l . "Hemodialysis i n the Home," T r a n s a c t i o n s

American S o c i e t y f o r A r t i f i c i a l I n t e r n a l Organs, v o l .
X I , (1965), p . 7.
DeNour, A . K. "Psychotherapy with P a t i e n t s on Chronic
H e m o d i a l y s i s , " B r i t i s h J o u r n a l of P s y c h i a t r y , v o l .
CXVI, (February, 1970), pp 207 - 215.
DeNour, A . K . , J . S h a l t i e l and J . W. Czoczkes. "Emotional
Reactions o f P a t i e n t s on Chronic H e m o d i a l y s i s , "
Psychosomatic M e d i c i n e , v o l . XXX, n o . 5, (September-
October, 1968), pp 521 - 533.

Eschbach, Joseph W., et a l . "Unattended Overnight Home Hemo-

d i a l y s i s , " T r a n s a c t i o n s of the American S o c i e t y f o r
A r t i f i c i a l I n t e r n a l Organs, v o l . X I I , (1966), p . 346.

Friedman, E . A . , et a l . " P s y c h o s o c i a l Adjustment to Maintenance

H e m o d i a l y s i s , " New York J o u r n a l o f M e d i c i n e , v o l . LXX,
(March, 1970), pp 629 - 637.

Gaspard, Nancy. "The Family o f the P a t i e n t with Long Term

I l l n e s s , " Nursing C l i n i c s o f North America, v o l . 5,
n o . 1, (March, 1970) pp 77 - 84.

Hampers, C . 1 L . , J . P . M e r r i l l and E l i z a b e t h Cameron. "Hemo-

d i a l y s i s i n the Home - A Family A f f a i r , " T r a n s a c t i o n s
American S o c i e t y f o r A r t i f i c i a l I n t e r n a l Organs, v o l .
X I , (1965), p . 3.
 56

Kennedy, A , C . " A S c o r i n g System f o r A s s e s s i n g P a t i e n t s on

Regular D i a l y s i s , " L a n c e t , v o l . I, ( A p r i l 5, 1969),
pp 701 - 702.

Kim, D . , et a l . "Renal Osteodystrophy i n Course of P e r i o d i c

D i a l y s i s f o r Chronic U r e m i a , " T r a n s a c t i o n s American
S o c i e t y f o r I n t e r n a l Organs, v o l . XIV, (1968), pp
367 - 371.
Kolff, W. J . " F i r s t C l i n i c a l Experience with the A r t i f i c i a l
K i d n e y , " Annals of I n t e r n a l M e d i c i n e , v o l . L X I I ,
<1965), p . 608.

Lewis, L . " T h i s I B e l i e v e About the Nursing Process - Key

to C a r e , " Nursing Outlook, v o l . XVI, n o . 5, (May,
1968), pp 26 - 29.

McCain, F a y e . " N u r s i n g by Assessment Not I n t u i t i o n , " American

J o u r n a l o f N u r s i n g , v o l . 65, n o . 4, ( A p r i l , 1965),
pp 82 - 84.

Meldrum, Maxine, J o y d e l l e Wolfrom and M i l t o n R u b i c e . "The

Impact o f Chronic Hemodialysis upon the S o c i o -
Economics o f a Veteran P a t i e n t G r o u p , " J o u r n a l o f
Chronic D i s e a s e s , v o l . XXI, (1968), pp 37 - 52.

Norton, Charles E . " C h r o n i c Hemodialysis as a M e d i c a l and

S o c i a l E x p e r i m e n t , " Annals o f I n t e r n a l M e d i c i n e ,
v o l . LXVI, (June, 1967), PP 1267 - 1276.

Onesti, G i , e t a l . " B i l a t e r a l Nephrectomy f o r C o n t r o l o f

Hypertension i n U r e m i a , " T r a n s a c t i o n s American
S o c i e t y f o r I n t e r n a l Organs, v o l . XIV. (1968).
PP 361 - 366.

Pendras, J . P . and Terrance P o l l a r d . " E i g h t Years Experience

with a Community D i a l y s i s C e n t e r , " T r a n s a c t i o n s of .
the American S o c i e t y f o r A r t i f i c i a l I n t e r n a l Organs,
(1970) p . 77.

Potter, D. J . and G . M, N i c k o s ; "Assessment o f P a t i e n t s

Undergoing Home Maintenance D i a l y s i s , " A r i z o n a
M e d i c i n e , v o l ; XXVII, ( A p r i l , 1970), pp 76 - 79.

Quinton, Wayne, David D i l l a r d and B e l d i n g S c r i b n e r . "Cannu-

l a t i o n o f Blood V e s s e l s f o r Prolonged H e m o d i a l y s i s , "
T r a n s a c t i o n s American S o c i e t y f o r A r t i f i c i a l I n t e r n a l
Organs, v o l . V I . (I960), p . 10k.

Read, Martha and Mary M a l l i s o n . " E x t e r n a l A r t e r i o v e n o u s

S h u n t s , " American J o u r n a l o f N u r s i n g , v o l . 72, n o .
1, (January, 1972), p ; 81.

Rich, Rosemary and James K. Dent. " P a t i e n t R a t i n g S c a l e , "

Nursing Research, v o l . X I , n o . 3, (Summer, 1962),
pp 163 - 171.
 57
Sand, P a t r i c i a , G . L i v i n g s t o n , and R. G , Wright. "Psycho-
S o c i a l Assessment o f Candidates f o r a Hemodialysis
Program," Annals o f I n t e r n a l M e d i c i n e , v o l . LXIV,
(March, 1966), pp 602 - 610;

Schoening, Herbert and I v e r A . I v e r s o n . "Numerical S c o r i n g

of S e l f - C a r e S t a t u s : A Study o f the Kenney S e l f -
Care E v a l u a t i o n , " A r c h i v e s o f P h y s i c a l M e d i c i n e ,
v o l . XLIX, n o ; 1, (January, 1968), pp 221 - 229;

S c r i b n e r , B e l d i n g H . , et a l . "The Treatment o f Chronic

Uremia by Means o f I n t e r m i t t e n t H e m o d i a l y s i s : A
P r e l i m i n a r y R e p o r t , " T r a n s a c t i o n s American S o c i e t y
f o r A r t i f i c i a l I n t e r n a l Organs, v o l . V I . (I960),
p . 114.

Shaldon, S t a n e l y and M. D. Contab. "Independence i n Mainten-

ance H e m o d i a l y s i s , " The L a n c e t , v o l . : , l , (March, 1968),
pp 520 - 523;

Shambraugh, P h i l i p W., et a l . "Hemodialysis i n the Home -

Emotional Impact on the Spouse," T r a n s a c t i o n s
American S o c i e t y f o r A r t i f i c i a l I n t e r n a l Organs,
v o l . . X I I I , (1967), PP 41 - 45.

Shea, E i l e e n , e t a l . "Hemodialysis f o r Chronic Renal F a i l u r e -

P s y c h o l o g i c a l C o n s i d e r a t i o n s , " Annals o f I n t e r n a l
M e d i c i n e , v o l . L X I I I , n o . 3, (March, 1965), PP 588 -

Short, M. J . and W. P . W i l s o n . "Roles of D e n i a l i n p h r o n i c

H e m o d i a l y s i s , " A r c h i v e s of General P s y c h i a t r y , v o l ;
XX, ( A p r i l , 1969), PP 433 - 437;

Simms, L a u r a . "The C l i n i c a l Nurse S p e c i a l i s t : An E x p e r i m e n t , "

Nursing Outlook, v o l . XXXII, (August, 1965), pp 26 -
W,
Stewart, B e t t y M. "Hemodialysis i n the Home: The Value o f
House C a l l s by T r a i n i n g P e r s o n n e l , " Nursing C l i n i c s
of North America, v o l . 4, (September, 1969), pp 431 -
W 2 T

Tenckhoff, H . , R. H . Jebsen, and J . C . Honet. "The E f f e c t o f

Long-Term D i a l y s i s Treatment on the Course o f Uremic
Neuropathy," T r a n s a c t i o n s American S o c i e t y f o r
I n t e r n a l Organs, v o l . X I I I . (1967), PP 53 - 61.

W i l l i a m s , Mary E d n a . "The P a t i e n t P r o f i l e , " Nursing Research,

v o l . IX, n o . 3, (Summer, i960), pp 122 - 124.

Wood, S; "Hemodialysis i n the Home," Canadian Nurse, vol.65,

n o . 4, ( A p r i l , 1969), PP 42 - 44.
 58
Wright, Robert G i , P . Sand and G . L i v i n g s t o n ; " P s y c h o l o g i c a l
Stress During Hemodialysis f o r Chronic Renal F a i l u r e , "
Annals o f I n t e r n a l M e d i c i n e , v o l . LXIV, (March, 1966),
pp 611 - 621.

Zimmerman, Donna S t u l g i s and C a r o l Gohrke. "The G o a l - D i r e c t e d

Approach: I t does Work," American J o u r n a l of N u r s i n g ,
v o l . 70, n o ; 2, (February, 1970), pp 306 - 310.

C. UNPUBLISHED REPORTS

A y d e l o t t e , M. K. " N u r s i n g Care of P a t i e n t s Undergoing

H e m o d i a l y s i s ! A Study R e p o r t , " Unpublished r e p o r t
presented to the T h i r d Annual V e t e r a n s ' A d m i n i s t r a t i o n
Workshop on Chronic H e m o d i a l y s i s , Chicago, A p r i l , 1967•

Blagg, C h r i s t o p h e r R. "Need f o r Home F o l l o w Up C a r e , " Un-

p u b l i s h e d r e p o r t to Kidney A d v i s o r y Committee,
Washington - A l a s k a Regional M e d i c a l Program, 1972;

Computer P r i n t - O u t N a t i o n a l D i a l y s i s R e g i s t r y , Research
T r i a n g l e Park, North C a r o l i n a , January, 1972.

MacElveen, P a t r i c i a M; E x p l o r a t i o n o f the Cooperative T r i a d

i n the I n v e s t i g a t i o n o f Home D i a l y s i s P a t i e n t
Outcomes. Unpublished D o c t o r a l D i s s e r t a t i o n , U n i v e r -
s i t y o f Colorado, 1971i

Smith, Dorothy. Manual f o r the Use of the Nursing H i s t o r y

T o o l . T h i r d R e v i s i o n , College o f N u r s i n g , U n i v e r s i t y
o f F l o r i d a , G a i n s v i l l e , F l o r i d a , 1971. (Mimeographed)
 APPENDIX A

NURSING ASSESSMENT FORM FOR MAINTENANCE HOME

HEMODIALYSIS PATIENT

59
 NURSING ASSESSMENT FORM FOR MAINTENANCE HOME

HEMODIALYSIS PATIENT

I. Physiological Assessment

Adequacy of D i a l y s i s and N u t r i t i o n a l Status

Pre-dialysis Creatinine

(1) Female: below 9; Male: below 10

(2) Female: 9 - 12.9; Male: 10 - 13.9
(3) Female: 13 or o v e r : Male: 14 or over
P r e - d i a l y s i s BUN

(1) below 80
(2) 80 - 100
(3) over 100

Serum Albumin

(1) 3.7 Gms f> or above

(2) 3.0 - 3.6
(3) 2.9 or below

24 Hour Urine Volume

(1) > 500 cc per day

(2) 250 - 500 cc per day
(3) <£ 250 cc per day

Intradialysis Weight Gain

Dry weight <. 65 K g . Maximum = 2 - 2 | K g .

Dry weight 65 - 80 K g . Maximum = 2 5 - 3 K g .
Dry weight 80 - 100 K g . Maximum = 3 - 3? Kg

(1) r a r e l y exceeds maximum

(2) exceeds about 50% of the time
(3) u s u a l l y exceeds maximum

Average P r e - d i a l y s i s Blood Pressure

(1) systolic below l60: d i a s t o l i c below 90
(2) systolic 160 - 190j d i a s t o l i c 90 - 100
(3) systolic above 190; d i a s t o l i c above 100

C i r c u l a t i o n Access

Subcutaneous F i s t u l a Puncture

(1) < ^ §5$ o f time do e x t r a puncture f o r access

(2) £5 - 50% of time do one or more e x t r a puncture
(3) ^> 50$ o f time do one or more e x t r a punctures

60
 61

F i s t u l a Flow

(1) A r t e r i a l or venous pressure monitor alarm

( u n r e l a t e d to blood p r e s s u r e ) oecurs d u r i n g
d i a l y s i s l e s s than 25% o f the time
(2) occurs 25 to 50% o f the time
(3) occurs g r e a t e r than 50% o f the time or the
n e c e s s i t y of keeping the arm completely
immobile to prevent alarm

E x t e r n a l A-V Shunt

Number o f i n f e c t i o n s over past s i x months

(1) none
(2) one to two m i l d i n f e c t i o n s c l e a r e d w i t h t r e a t -
ment
(3) more than two m i l d i n f e c t i o n s or any severe
i n f e c t i o n which r e s u l t e d i n r e v i s i o n or
permanent s k i n damage i n cannula a r e a

B l e e d i n g Episodes
(1) no b l e e d i n g i n l a s t s i x months
(2) c h r o n i c s m a l l l e a k i n g of b l o o d at e x i t s i t e s or
one to two episodes of moderate blood l e a k i n g
a t e x i t s i t e s or v e r y small hematoma formation
i n the l a s t s i x months
(3) 3 or more moderate blood l e a k i n g episodes or
any severe b l e e d o r l a r g e hematoma formation
i n the l a s t s i x months

C l o t t i n g Episodes
(1) 0 - 1 i n l a s t s i x months
(2) 2 - 4 i n l a s t s i x months
(3) more than 4 or any one which r e s u l t e d in
r e v i s i o n of shunt

Bone S t a t u s

X-Ray Evidence

(1) m i l d to moderate d e m i n e r a l i z a t i o n
(2) severe d e m i n e r a l i z a t i o n
(3) s u b - p e r i o s t e a l e r o s i o n and/or v a s c u l a r c a l c i f i -
c a t i o n p l u s any degree of d e m i n e r a l i z a t i o n

C l i n i c a l Evidence

(1) no bone p a i n
(2) bone p a i n
(3) p a t h o l o g i c a l f r a c t u r e w i t h i n past year
 62

1 2 3
Anemia and Cardiac Status

Hematocrit

(1) average ^> 25%

(2) 20 - 25%
(3) 25%
Shortness o f Breath and/or Fatigue

(1) no s . o . b . or f a t i g u e with normal a c t i v i t y

(2) moderate s . o . b . o r f a t i g u e with normal a c t i v i t y
(3) severe s . o . b . or f a t i g u e with normal a c t i v i t y

Cardiac Symptoms

(1) no chest p a i n or i r r e g u l a r i t y (except o c c a s s -

i o n a l skipped beat)
(2) chest p a i n on e x e r t i o n - m i l d to moderate
(3) severe chest p a i n on e x e r t i o n and/or t a k i n g
d i g i t a l i s or q u i n i d i n e

Neuropathy

(1) no n e u r o l o g i c a l symptoms
(2) numbness i n f e e t
(3) i n t e r f e r e n c e with walking

Exam f o r D i s t a l Motor Nerves

(1) p u l l down toes with d i f f i c u l t y

(2) toes p u l l down e a s i l y
(3) p a t i e n t cannot extend toes

Exam f o r Proximal Motor Nerves

(1) stands on toes e a s i l y

(2) stands on toes with d i f f i c u l t y
(3) unable to stand on toes

Sexual Functioning

(1) s a t i s f i e d with degree o f f u n c t i o n

(2) not o p t i m a l l y s a t i s f i e d - some d i f f i c u l t y
(3) very d i s s a t i s f i e d with degree of f u n c t i o n

Menstrual Cycle

(1) normal f o r age

(2) i r r e g u l a r menstruation: moderate to e x c e s s i v e
b l e e d i n g ; or absence o f menses i f bothersome
. to p a t i e n t
(3) severe or prolonged b l e e d i n g with menses
 63

2
Sleep Patterns

(1) no d i f f i c u l t y s l e e p i n g
(2) some or moderate d i f f i c u l t y s l e e p i n g
(3) severe d i f f i c u l t y s l e e p i n g so t h a t f u n c t i o n s
p o o r l y next day

Miscellaneous Symptoms

Itching

(1) absent
(2) moderate
(3) severe
Nausea a n d / o r Vomiting

(1) rarely
(2) moderately often
(3) severe and troublesome

Headache
(1) m i l d to moderate and occurs r a r e l y
(2) moderate to severe occurs o c c a s i o n a l l y
(3) severe and occurs o f t e n

D i z z i n e s s or F e e l i n g s o f D i s e q u i l i b r i u m

(1) absent
(2) o c c a s i o n a l
(3) o f t e n

Muscle Cramps

(1) rarely
(2) intermittently
(3) often

C o n s t i p a t i o n o r D i a r r h e a ( c i r c l e one or both)

(1) ,.; r a r e l y
(2) i n t e r m i t t e n t l y
(3) o f t e n

C h i l l s and Fever

(1) rarely
(2) intermittently
(3) often
 64

II. Technical A b i l i t y Assessment

Machine m a l f u n c t i o n R e q u i r i n g T e c h n i c i a n c o n s u l t a t i o n

(1) occurs r a r e l y or about 3 times y e a r l y

(2) occurs between 3 and 6 times y e a r l y
(3) occurs f r e q u e n t l y - more than 6 times y e a r l y
R e b u i l d i n g D i a l y z e r because of F a i l u r e to Test Out

(1) r a r e l y necessary
(2) o f t e n but l e s s than 25% o f the time
(3) over 25% of the time

Incidence of Blood Leaks on F i r s t D i a l y s i s after

Rebuilding

(1) r a r e
(2) occurs but l e s s than 25% o f time
(3) over 25% o f the time
Feel Frustrated over T e c h n i c a l Problems

(1) only r a r e l y
(2) moderately o f t e n
(3) most o f the time

Degree o f Confidence i n A b i l i t y to Handle Procedures

(1) very c o n f i d e n t
(2) c o n f i d e n t most of the time but somewhat
uneasy on o c c a s i o n
(3) uneasy most of the time

III. Psychosocial Assessment

Hours Spent i n P r o d u c t i v e A c t i v i t y (employment, house-

work, s t u d i e s , e t c . )

(1) 6 or more hours d a i l y

(2) 3 - 6 hours
(3) 0 - 3 hours

Present Work L e v e l is

(1) same as before my i l l n e s s

(2) s l i g h t l y l e s s than before
(3) much l e s s than before

Enjoy R e c r e a t i o n a l A c t i v i t i e s

(1) often
(2) occasionally
(3) rarely
 65

Which o f these Statements Most Describe Your Own

Feelings?

(1) Though I would r a t h e r I d i d not need d i a l y s i s

I am g l a d t h a t i t i s a v a i l a b l e and f e e l i t i s
a l l worth while to have t h i s chance to extend
my l i f e .
(2) I f i n d myself wondering f a i r l y o f t e n i f I made
the r i g h t c h o i c e i n d e c i d i n g to p r o l o n g my
l i f e by d i a l y s i s .
( 3 ) I r e g r e t my d e c i s i o n to s t a r t on the kidney
and f e e l my l i f e i s no l o n g e r worth w h i l e .

How does D i a l y s i s A f f e c t Your Family?

(1) have accepted

(2) moderately anxious
( 3 ) very anxious

When Meeting New People o r T a l k i n g with Acquaintances

(1) I make no e f f o r t to b r i n g up my i l l n e s s but am

very comfortable t a l k i n g about i t i f the
s u b j e c t should a r i s e .
(2) I f e e l somewhat uncomfortable i n d i s c u s s i n g my
illness.
( 3 ) My i l l n e s s makes me f e e l d i f f e r e n t and not
accepted by others and I p r e f e r to keep i t a
secret.

I F i n d t h a t I can L i v e Within My Present R e s t r i c t i o n s

(such as d i e t , r e g u l a r d i a l y s i s , reduced p h y s i c a l
a c t i v i t y ) Comfortably.

(1) yes
(2) about h a l f the time
( 3 ) no
Which o f These Statements Best Describe Your Own
Feelings?

(1) People who are on d i a l y s i s should do the

most they can f o r themselves but accept h e l p
from f a m i l y and f r i e n d s when needed.
(2) People who are on d i a l y s i s have a r i g h t to
expect t h a t o t h e r s w i l l h e l p them.
( 3 ) People who are on d i a l y s i s should not be
expected to take care o f themselves.
 66

P a r t i c i p a t e i n S o c i a l o r Community O r g a n i z a t i o n s and
' Activities

(1) about the same as before

(2) l e s s than before
(3) much l e s s than before

F e e l Able to F u n c t i o n as a Husband, Wife, Mother, Father,

Family Member, ( c i r c l e those t h a t apply)

(1) as w e l l or b e t t e r than before my i l l n e s s

(2) not as w e l l as before my i l l n e s s
(3) p o o r l y

Family R e l a t i o n s h i p s are

(1) f o r the most p a r t , harmonious and s a t i s f y i n g

(2) marked by frequent misunderstandings and
t e n s i o n - are l e s s than s a t i s f y i n g
(3) completely d i s r u p t e d , a n t a g o n i s t i c or s e v e r e l y
dissatisfying

R e l a t i o n s h i p s with F r i e n d s and R e l a t i v e s are

(1) good and mutually s a t i s f y i n g

(2) somewhat s t r a i n e d s i n c e my i l l n e s s
(3) very s t r a i n e d o r absent or disharmonious

There are People to t u r n to f o r Help when I Need i t

(1) yes
(2) not always
(3) no
Which o f these Statements Most D e s c r i b e s Your F e e l i n g s
About Your S i t u a t i o n

(1) Though I know I w i l l continue to have to l i v e

with r e s t r i c t i o n I enjoy l i f e and g r e e t most
days with reasonable optimism.
(2) Knowing t h a t I must continue to l i v e with
r e s t r i c t i o n s I f i n d myself f e a r f u l about the
future and f i n d l e s s enjoyment i n l i f e .
(3) Knowing t h a t I must continue to l i v e with
r e s t r i c t i o n s I f i n d myself down i n the dumps
much o f the time with l i t t l e enjoyment i n
life
Which o f these Statements Best D e s c r i b e s the Way You
F e e l Most o f the Time?

(1) Reasonably comfortable and at peace with

myself and o t h e r s
(2) Uncomfortable and somewhat down i n the dumps
or i n a bad mood
(3) Very uncomfortable, angry and annoyed o r v e r y
down i n the dumps and depressed

In General I F i n d My L i f e

(1) s a t i s f y i n g
(2) l e s s than s a t i s f y i n g
(3) v e r y d i s s a t i s f y i n g
 APPENDIX B

NURSES* QUESTIONNAIRE

68
 NURSES' QUESTIONNAIRE

The purpose of t h i s e x e r c i s e i s to e l i c i t i n f o r -
mation from those who work c l o s e l y with d i a l y s i s p a t i e n t s
r e g a r d i n g t h e i r reasons f o r p l a c i n g a p a t i e n t i n the c a t e -
g o r i e s o f f u n c t i o n i n g w e l l or f u n c t i o n i n g p o o r l y . Try to
t h i n k o f those t h i n g s which are r e a l l y the most important
i n f o r m u l a t i n g your o p i n i o n ; These can i n c l u d e medical
r e a s o n s , s o c i a l or p s y c h o l o g i c a l reasons or a n y t h i n g which
you t h i n k s u b s t a n t i a l l y c o n t r i b u t e s to the p a t i e n t s b e i n g
p l a c e d i n the c a t e g o r y .

1. Think o f one p a t i e n t you know w e l l whom you f e e l i s

p o o r l y a d j u s t e d or doing p o o r l y i n . g e n e r a l on d i a l y s i s .
Describe t h i s person b r i e f l y (do not mention h i s or her
name) and s t a t e why you f e e l t h i s person i s doing
p o o r l y r a t h e r than w e l l ;

2, Think of one p a t i e n t you know w e l l whom you see as doing

very w e l l on d i a l y s i s . Please d e s c r i b e t h i s p a t i e n t and
your f e e l i n g s about why you f e e l he should be r a t e d as
doing w e l l .

69
 APPENDIX C

SEMI-STRUCTURED PATIENT INTERVIEW SCHEDULE

70
 SBMI-STRUCTURED PATIENT INTERVIEW SCHBDULB

General I n t r o d u c t i o n

I am mostly i n t e r e s t e d today i n f i n d i n g out from

you which p a r t s of your l i f e and h e a l t h have been most

affected by your need f o r treatment on the a r t i f i c i a l

kidney - t h a t i s - what mostly seems to cause you t r o u b l e

and what seems to make t h i n g s e a s i e r f o r y o u . I have a few

questions i n mind but f i r s t I would l i k e to hear from you

whatever you f e e l l i k e t e l l i n g me so I make sure I f i n d out

what i s r e a l l y important t o : y o u .

Questions

In what way i s your l i f e d i f f e r e n t now than i t was before

you needed h e m o d i a l y s i s ? Occupation, l e i s u r e activities,

sleep, community involvement, f a m i l y r e l a t i o n s h i p s , friendship

circles, etc.

How have these changes a f f e c t e d the way you f e e l about y o u r -

self o r your life?

How do you f e e l p h y s i c a l l y most o f the time now? Emotionally?

What t h i n g s bother you the most about your present state?

What t h i n g s seem to help you the most?

What s i n g l e improvement i n your present s i t u a t i o n would make

life on h e m o d i a l y s i s more t o l e r a b l e to you?

71
 APPENDIX D

VALIDATION FORM

72
 VALIDATION FORM

Data d e r i v e d from t h i s assessment form would be adequate to

determine the r e l a t i v e s t a t e of w e l l b e i n g of the mainten-
ance home h e m o d i a l y s i s p a t i e n t and would p o i n t out h i s
need f o r f o l l o w up c a r e .

I agree

I agree but f e e l the f o l l o w i n g changes should be made:

I d i s a g r e e f o r the f o l l o w i n g r e a s o n s :

Signature:

73
 APPENDIX E

INSTRUCTIONS TO NURSES PARTICIPATING

IN THE RELIABILITY TESTING

INSTRUCTIONS TO NURSES PARTICIPATING IN THE RELIABILITY TESTING

The purpose o f t h i s assessment t o o l i s to r a t e the

p a t i e n t on each item so t h a t a t o t a l score w i l l r e f l e c t his

need f o r f o l l o w up c a r e i T h i s t o o l i s not intended as a

depth a n a l y s i s of a p a t i e n t ' s problems but o n l y as a way o f

r e f l e c t i n g i n which areas he has the g r e a t e s t needs as well

as showing h i s r e l a t i v e l e v e l o f functioning.

The p a t i e n t has been t o l d t h a t he w i l l be r a t e d by

two d i f f e r e n t n u r s e s . The reason f o r t h i s i s to p r o v i d e

two s c o r e s on each p a t i e n t so t h a t the scores may be compared

s t a t i s t i c a l l y to demonstrate whether o r not the r a t i n g s p r o -

v i d e d by the t o o l are independent o f the person doing the

rating.

Please do not use any p r i o r knowledge you may have

of a p a t i e n t to answer the q u e s t i o n s , but r e c o r d the response

the p a t i e n t g i v e s . I f a p a t i e n t waivers on the answer you

may c l a r i f y f o r him, b u t , p l e a s e have him make the f i n a l dec-

i s i o n on the category.

Each item has a choice o f three responses numbered

1» 2 , , 3 , Please p l a c e a check under the a p p r o p r i a t e number

i n the column to the r i g h t opposite the i t e m ; I f the p a t i e n t

chooses the number two response to an item then p l a c e a check

mark under the number two column opposite t h a t item.

In a l l cases the number one response i s designed to

r e p r e s e n t the b e t t e r l e v e l o f f u n c t i o n i n g , the number three

response the p o o r e r i

75
 76
The h i g h e s t t o t a l score should r e f l e c t the

p a t i e n t with the g r e a t e s t need f o r f o l l o w up care while the

lowest t o t a l score should r e f l e c t the p a t i e n t with the least

need.