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Patients' and nurses' perspectives on good adjustment to chronic hemodialysis

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Title:
Patients' and nurses' perspectives on good adjustment to chronic hemodialysis
Creator:
Huber, James W., 1949-
Copyright Date:
1982
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English

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Subjects / Keywords:
Anxiety ( jstor )
Death ( jstor )
Diseases ( jstor )
Home hemodialysis ( jstor )
Kidney dialysis ( jstor )
Nurses ( jstor )
Perceptual motor coordination ( jstor )
Psychology ( jstor )
Questionnaires ( jstor )
Renal dialysis ( jstor )

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University of Florida
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University of Florida
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All applicable rights reserved by the source institution and holding location.
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09385296 ( oclc )
ABW4080 ( ltuf )
0028816386 ( ALEPH )

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PATIENTS' AND NURSES' PERSPECTIVES ON
GOOD ADJUSTMENT TO CHRONIC HEMODIALYSIS






BY

JAMES W. HUBER


A DISSERTATION PRESENTED TO THE GRADUATE COUNCIL
OF THE UNIVERSITY OF FLORIDA IN
PARTIAL FULFILLMENT OF THE REQUIREMENTS
FOR THE DEGREE OF DOCTOR OF PHILOSOPHY



UNIVERSITY OF FLORIDA


1982































Copyright 1982

by

James W. Huber














My own preference would be to posit the problem in a
philosophical existential framework. Karl Jasper has
coined the concept of "extreme situation," which shows
man "at the end of his tether but off from the consol-
ations of all that seems solid and earthly in the
daily round of life, a situation on the far side of
what is normal, routine, accepted, traditional, safe-
guarded." He suggests that in such an extreme situ-
ation, the solidity of the so-called real world
evaporates and we are threatened by the void.

--Carl H. Fellner



Henceforth the artificial kidney will present more
and more patients with a makeshift life. But what
monstrous machines, what expenditure of technologi-
cal skills, chemistry, and money is necessary to
create a substitute, and moreover still an imperfect
one, for an organ that nature has made the size of
a small clenched fist! Permanent treatment with the
artificial kidney must be counted among the bizarre
excesses of man in the stage of technocratic civil-
ization. Civilized man, surrounded by tubes, plas-
tics, glass, and pumps, drowns in a deluge of chemi-
cals, is condemned to slavish dependence on a mach-
ine. The question is whether he will not after all--
in spite of all the science fiction propagandists of
medicine--one day regard the eternal sleep of death
as more tolerable than this kind of artificial exist-
ence.

--Pawlow Bronsky, June 1969



We are trapped and no outsider can open the trap for
us.


--Wife of a dialysis patient
































Dedicated to those who must face
life on dialysis and to those who
help them bear the burden.














ACKNOWLEDGMENTS


I would like to thank my committee chairperson, Dr. Harry Grater,

for helping give shape to my sense of the purpose and process of psy-

chotherapy. His insights, attitudes and questions were both challeng-

ing and exciting, and are still much appreciated.

I would also like to thank my other committee members, Drs. Algina,

Nevill and Ziller for their support and suggestions, and especially Dr.

Carolyn Tucker, whose warmth, personal availability and willingness to

give were a constant source of encouragement throughout this study. To

Cheryl Phillips I offer many, many thanks for her friendship and her

practical knowledge of the mechanics of winding one's way through the

graduate school experience.

It is impossible to know the many ways in which my wife, Marion,

and daughter, Jenny, have helped me through this long process. Their

loving presence has constantly given me a joyful reminder of the most

important things in life. I am deeply grateful for their gift of

themselves to me. And to my parents I give my heartfelt thanks for

their continued interest and support.

Finally, to David Bernstein, who shared deeply in my life in

graduate school, go my sincere thanks and warm regards. It is a

pleasure to anticipate the continued deepening of our friendship in

the future.

















TABLE OF CONTENTS


ACKNOWLEDGMENTS . . . .

ABSTRACT . . . .

INTRODUCTION AND REVIEW OF THE LITERATURE .


Purpose of the Present Study . .
The Stresses of Dialysis . . .
Physical Effects of Hemodialysis .
The "Machine" and Medical Regimen .
Psychological Stresses . .
Alterations in Life-Style . .
Family Concerns . . ..
Interactions with Medical Staff .
Is Life on Dialysis Worth it? . .
Responses of Patients . . .
Meaning of the Illness . .
Stages of Adaptation to Dialysis .
Life Satisfaction . . .
Defense Mechanisms . . .
Psychiatric Complications . .
Self-Concept . . .
Locus of Control . . .
Compliance . . .
Vocational Rehabilitation . .
Home Dialysis . . .
Responses of Medical Staff . .
Nurses' Response to Dialysis Treatment
Medical Staff's Perception of Patient
Adjustment . . . .
Staff-Patient Interaction . .
Responses of Families . . .
Predicting Adjustment . . .
Criteria for Assessing Adjustment .

METHOD . . . . .

Subjects . . . .
Procedure . . . .
The Questionnaire . . .
The Clinical Instruments To Be Constructed


. . viii


. 10
. 3
. 412
. 5
S. 16
S. 17
. 12









30
18
. 20
. 22
... 24





. 428
. 30
. 33
. 34
. 36
. 41
. 41

. 44
. 47
. 49
53
. 58

. 61


CHAPTER


PAGE










RESULTS . . . . . 68


Analyses of Results from the Questionnaire-
Survey . . . . .
Comparison of Nurses and Patients . .
Analysis of Nurses' Data . . .
Nurses as a whole group . .
Nurses grouped by experience . .
Analysis of Patients' Data . .
Patients as a whole group . .
Patients grouped by experience ..
Global Perceptions of Illness and Treatment
by Nurses and Patients . .
Further Analysis of Patients' Data .
Construction of Clinical Instruments . .
The G-Scale . . . .
The N-Scale . . . .
The P-Scale . . . .

DISCUSSION . . . . .

Comparison of Nurses and Patients . .
Further Comments on Nurses' Responses .
Further Comments on Patients' Responses .
The Scales . . . . .
Directions for Future Research . .


APPENDIX A

APPENDIX B


APPENDIX C


APPENDIX D

REFERENCES


PATIENT ADJUSTMENT TO DIALYSIS SCALE (PADS). 133

FREQUENCIES AND PERCENTAGES OF NURSE RESPONSES
PER ITEM BY EXPERIENCE . . .... 136

FREQUENCIES AND PERCENTAGES OF PATIENT RESPONSES
PER ITEM BY EXPERIENCE . . .... 141

SUMMARY OF THE STATUS OF EACH ITEM . ... 146

. . . . . . . 150


BIOGRAPHICAL SKETCH . . . . ... .... 162


FOUR


. 68
S. 79
S. 79
. 82
S. 87
. 88
S. 91

S. 92
S. 94
S. 94
. 95
99
S. 01

S. 104

S. 109
S. 120
S. 122
S. 127
. 130


THREE














Abstract of Dissertation Presented to the Graduate Council
of the University of Florida in Partial Fulfillment of the
Requirements for the Degree of Doctor of Philosophy



PATIENTS' AND NURSES' PERSPECTIVES ON
GOOD ADJUSTMENT TO CHRONIC HEMODIALYSIS



by

James W. Huber

August 1982

Chairman: Harry Grater
Major Department: Psychology

The focus of this study was patients' adjustment to chronic hemo-

dialysis. Although many studies have noted the extreme difficulties

that patients face in life on dialysis, there is little work that has

even attempted to define such adjustment in more than global terms.

In an effort to help dialysis nurses fulfill their task of providing

comprehensive, quality patient care, the purpose of the present study

was essentially two-fold. First, it was exploratory in that it used a

questionnaire-survey to uncover the working concepts of good adjust-

mer.t to dialysis with which nurses and patients operate. By breaking

down the concept of adjustment into 43 component items the study iden-

tified items considered by one or both groups to be important, items

considered to be unimportant, and items about which there was disagree-

ment concerning their importance for good adjustment. The second


viii










purpose of the study was to provide nurses with instruments with which

they can nonintrusively assess patients' adjustment to dialysis. Using

the results from the questionnaire-survey, a consensus-approach was

taken to construct instruments which are basically codes of expected

behaviors which patients and/or nurses considered to be important for

good adjustment.

The highlights of the results from the sample of 164 nurses and

79 patients were as follows. First, the two groups differed to a sta-

tistically significant degree in their pattern of responses to 38 out

of the 43 items. Patients were much more likely than nurses to rate

items as "crucial, absolutely necessary for good adjustment" to dial-

ysis. Second, although nurses could at least tend to agree on the

relative importance of the distinctly medical items, there were large

differences among them in their perceptions of the relative importance

of the other items which covered other aspects of adjustment. Third,

in both groups, experience with dialysis was associated with only a

few differences in the perception of the criteria for good adjustment.

Fourth, nurses and patients significantly differed in their global

perceptions of the personal meanings of the illness and treatment.

Implications of the results for patient care and future directions in

research were discussed.















CHAPTER I

INTRODUCTION AND REVIEW OF THE LITERATURE


Chronic illness has been with us from the very dim past of the

human species, and one of the ironies of medical progress is that the

science that has sought to eliminate, cure or arrest chronic illness

has also spawned a new set of problems as well. While medical science

has, for example, laudably provided a measure of relief from pain and

a retardation of the deterioration associated with some chronic ill--

nesses, it has also produced a situation in which many patients sur-

vive with illnesses that are chronically very grave. Consequently,

they are forced to live severely restricted lives that are altered to

fit the treatment regimen and the host of non-human devices upon which

their prolonged lives are absolutely dependent. The task of coping

with such a stressful situation and making a good adjustment to it

places extreme demands on patients, often calling for an inner strength

and resourcefulness that is itself chronically sapped by the illness.

Such an illness and such a treatment are chronic renal failure and

hemoJialysis.


Purpose of the Present Study

The focus of this investigation was patients' adjustment to chronic

hemo'ialysis, and how such adjustment is viewed by the patients them-

sleves and the medical personnel (primarily dialysis nurses) who treat






2



then two to three times a week, five to eight hours per treatment. As

such this study did not include a medical description or explanation

of the illness per se except as it is relevant to the lived experience

and behavior of the patient, nor did it include the problem of adjust-

ing to peritoneal dialysis (an alternative form of treatment) or kid-

ney transplantation. The goal was to establish criteria for assessing

patients' adjustment to chronic hemodialysis, and to lay the groundwork

for a set of clinical instruments that will help medical personnel in

the assessment of adjustment by delineating specific behaviors and at-

titudes that are the important components of adjustment.

Research in this area is in an embryonic stage, with a paucity of

studies that even attempt to define such adjustment in more than global

terms. Even though we suspected that there would be some differences

in how dialysis nurses and patients perceive the illness and the treat-

ment and adjustment to these realities, our fund of knowledge was too

limited to make meaningful hypotheses as to how they might differ.

Again, even though we suspected that nurses' and patients' length of

experience with heinodialysis would influence their perceptions of the

situation, the available data were too limited to help us generate mean-

ingful hypotheses as to how. Therefore, the first step was to broaden

our data base of how nurses and patients--experienced and inexperi-

enced--perceive the illness, the treatment and patients' adjustment

to life on dialysis.

Ihis study was essentially a groundwork component in an on-going

project that is studying adjustment to dialysis. As such, it consisted









of an initial survey and construction of a set of clinical instruments

with which medical personnel can nonintrusively assess individual pa-

tients adjustment. Although adjustment may be in the eye of the

beholder, a consensus-approach to the defining of adjustment was used

to establish a norm against which an individual patient's attitudes

and behaviors can be compared. Such an assessment is very important

in helping treatment teams devise a comprehensive treatment plan for

each of their patients which can literally mean the difference between

life and death. However, due to the difficulty and expense of obtain-

ing and questioning large samples of subjects in this area, further

refinement of such a set of clinical instruments--as well as experi-

mentation with them--will have to await the next step in the on-going

project.


The Stresses of Dialysis

Chronic hemodialysis has been a viable mode of treatment since

1960 when the artificial shunt made it possible for a human being to

be repeatedly connected and disconnected from an artificial kidney.

Since then the population of dialysis patients in the U.S.A. as of

1978 has grown to over 35,000 (Weinman, 1978). Soon after chronic

hemodialysis started to be a regular treatment for chronic renal

failure, it was obvious that the treatment itself generated an ex-

treme amount of stress in many different ways (Abram, 1968; Cramond,

Knight & Lawrence, 1967; Wright, Sand & Livingston, 1966). In order

to understand the task faced by a patient, the family and medical










staff in making a good adjustment to chronic hemodialysis, it is neces-

sary to sketch a picture of the stressors of the situation and the re-

actions to the stressors that have been clinically observed and docu-

mented.

Abram (1972) noted that with any chronic illness the patient per-

ceives the illness as a threat to bodily integrity and functioning, and

this, in turn, interferes with interpersonal relationships and the

person's relation to the world. In general, the illness and its treat-

ment have ramifications for virtually all the major areas of personal

functioning. Thus, in delineating the stresses that result from treat-

ment by chronic hemodialysis most writers emphasize both the range and

the magnitude of the difficulties that need to be faced (Abram, 1974;

Goodey & Kelly, 1967; Levy, 1979; MacNamara, 1967; Menzies & Stewart,

1968; Rajapaksa, 1979; Salmons, 1980). A particularly eloquent

although grim description of what the dialysis patient faces is re-

corded by Calland (1972) who is himself both a patient and a physician.


Physical Effects of Hemodialysis

Halper (1971) has noted the fragility of the dialysis patient's

medical status, and it is this fragility which makes it virtually im-

possible for patients to predict when they will feel well or ill, and

is a source of great frustration when making plans. There are compli-

cations with shunts quite often, and the skin becomes discolored after

a while. Halper documents how dialysis creates what is basically a

temporary OBS characterized by decreases in memory and reality-testing.

The EEG deteriorates, and the patient shows signs of the Disequilibrium










Syndrome: restlessness, headache, nausea, and increased blood pressure.

Calland (1972), furthermore, reports how the process of dialysis leads to

cerebral edema, fatigue, dyspnea and muscle weakness. Drowsiness, diz-

ziness and nausea may accompany the rapid changing of the electrolytic

balance in the patients' system. Sometimes there is a sick feeling

that emerges a day before dialysis treatment as the waste products

build up in the patient's body, and the patient may experience a

washed-out feeling for a day after dialysis while the body stabilizes.

Menzies and Stewart (1968) report that all seven of their patients

intermittently showed a delirious or subdelirious reaction, suggesting

that episodic organic cerebral dysfunction occurs during dialysis.

However, De-Nour, Shaltiel and Czaczkes (1968) note that evidence from

clinical manifestations (such as rigidity and inability to adapt to

changing situations), psychological tests and EEG suggests that many

patients develop brain dysfunctions of a more chronic nature.


The "Machine" and Medical Regimen

Chronic hemodialysis is a way of life that absolutely depends on

the artificial kidney machine. To stop dialysis treatments means death

by uremic poisoning within days or weeks as the wastes and toxins slowly

build up within the body. The "machine," as it is called, is a life-

sustainer or even life-giver that demands total obedience, and the per-

son's relationship to it is often marked by extreme ambivalence or

outright hatred. Treatment "on the machine" requires the patient to

be hooked up two or three times a week for five to eight hours or more

at a time. The patient usually reclines in an easy-chair or hospital










bed while the blood flows out of the shunt in the arm, through plastic

tubes through which it is visible, to the machine which dialyzes it,

and then back through plastic tubes to the shunt. Although the ma-

chine requires monitoring, the patient is relatively passive through-

out the dialysis.

Viederman (1974), working from a psychoanalytic framework, sug-

gests that the machine and the restricted diet "inevitably" evoke

conscious or unconscious fantasies of the treatment that relate to

the earliest developmental stages, and have to do with the interaction

between mother and child, and with total helpless dependency. The

treatment itself, he claims, requires regression to this earliest

stage. Lefebvre, Nobert and Crombez (1972), on the basis of psycho-

analytic impressions from following 35 patients for three years, found

that patients' method of relating to the machine was to use the method

of internalization known as incorporation (in contrast to introjection)

with the result that the boundaries between the self and object become

blurred. Furthermore, patients do not incorporate the machine, but

rather they feel incorporated by it. Abramson, Garg and Angell (1975)

report how integral a part of the self-image the machine becomes for

patients. In a Draw-A-Person task patients with chronic renal failure

drew pictures that either included a shunt in the arm (or, occasionally,

the leg) or hid the arm in some fashion, such as with a sleeve of put-

ting the arm behind the back.










Wright et al. (1966) note that after awhile on dialysis, hook-up

to the machine comes to have a low degree of associated stress through

familiarity rather than through denial. However, they and other writ-

ers have noted the continued anxiety about accidents and complications

with the shunt (Freyberger, 1973; Halper, 1971). Friedman, Goodwin

and Chaudhry (1970a) report that in their sample of 20 patients, the

average number of days spent being hospitalized per patient was 28

days per year, usually because of infections or difficulties with the

shunt.

Two very important aspects of the medical regimen are diet re-

strictions and fluid restrictions. Calland (1972) complains bitterly

of how the restrictions on sodium and potassium make food unpalatable,

but even that restriction is not as bad as being held to 800 ml. total

intake of fluids per day. Czaczkes and De-Nour (1978) also note how

stressful the fluid restriction is, as well as the fact that for un-

known reasons patients are thirsty all the time, which makes the re-

striction just that much more difficult.


Psychological Stresses

Perhaps the most important psychological stressor to be identi-

fied in the early psychiatric studies of hemodialysis is the conflict

about dependency (Abram, 1968; Cramond et al., 1967; De-Nour et al.,

1968; Freyberger, 1973; Goodey & Kelly, 1967; Halper, 1971; Moore,

1972; Shea, Bogdan, Freeman & Schreiner, 1965; Short & Wilson, 1969;

Wright et al., 1966). The patient is dependent upon the machine, the

medical staff, and often the society at large that subsidizes the










treatment. Most chronic hemodialysis patients are adults in their

productive years, and the dependency that treatment requires comes

into conflict with the desire to be an independent, productive, care-

giving adult. As noted above, Viederman (1974) states that treatment

requires regression precisely because of the need for dependency upon

staff and machine. Although this regression sets up enormous conflicts

in some patients, other patients enjoy the regression to such depend-

ency (Levy, 1976; Reichsman & Levy, 1972). However, even in this lat-

ter case dependency is a central issue, for Reichsman and Levy (1972)

suggest that such enjoyment of dependency is due to the fact that the

dependency needs of these patients were not sufficiently gratified

when they had to function independently. For those patients whose

dependency needs had not been frustrated, the enforced dependency of

hemodialysis is a very real threat (De-Nour et al., 1968; De-Nour &

Czaczkes, 1976).

Such dependency often leads to feelings of helplessness and rage

(Nadelson, 1971), and it is these feelings of rage that constitute

another area of conflict and psychological stress. While the fact of

increased aggression is described by some writers (De-Nour et al.,

1968; De-Nour & Czaczkes, 1976; Reichsman & Levy, 1972; Wright et al.,

1966), other writers note the difficulties and anxiety many patients

have in expressing their anger (Halper, 1971; MacNamara, 1967) because

to express this anger and rage is to risk rejection, withdrawal, and

even punishment by those upon whom they are so totally dependent.










There are changes in body image that constitute another area of

psychological stress. Although in the first decade of hemodialysis

there were reports of rather bizarre feelings about, and relations to,

the machine as part of the patient's body (Abram, 1970; Cooper, 1967;

Shea et al., 1965), Czaczkes and De-Nour (1978) report that such ex-

treme machine-related body image disturbances are rare and are no

longer a central issue. Preoccupation and even shame of the shunt

in the arm are reported by some (De-Nour et al., 1968; Lefebvre et al.,

1972) while concern with general appearance is reported by others

(Short & Wilson, 1969). Important as these concerns are, Czaczkes and

De-Nour (1978) emphasize that the major issue of body image for dialy-

sis patients is the loss of urination. In an early report De-Nour

(1969) described the psychological importance of urination and the

stress associated with the loss of this function which led some

patients to have "phantom urination." De-Nour attributes this to the

mobilization of extreme denial in the face of the stress over the

loss of urination. Since that initial report other writers have

confirmed and further described the stress of the loss of this func-

tion (Basch, 1974; Pinney, 1976; Tourkow, 1974; Wijsenbeek & Munitz,

1970). Czaczkes and De-Nour (1978) even go so far as to say that the

desire to regain urination is an important motivation in patients

seeking to undergo transplantation.

Another aspect of the alteration in body image and functioning

is the usually drastic alterations in sexual relations and self-percep-

tion. Due to decreased libido, fears about injuring the shunt site or










acceptance by the partner, and fears resulting from lower self-esteem,

patients report decreased frequency of intercourse and a high rate of

total or partial impotence (Abram, Hester, Sheridan & Epstein, 1975;

Foster, Cohn & McKegney, 1973; Levy, 1973; Steele, Finkelstein &

Finkelstein, 1976).

A fourth major area of psychological stress in chronic hemodialy-

sis is the threat of death. Chronic renal failure is a terminal ill-

ness, but how long patients survive on hemodialysis is dependent on

many factors, most important of which are compliance with the medical

regimen and the presence or absence of other medical problems. Although

the threat of death can be a very significant stressor for some patients

(Sand, Livingston & Wright, 1966; Wijsenbeek & Munitz, 1970), other

stresses such as job changes and marital problems come to have even

greater significance (Wright et al., 1966) and lead to the demoraliz-

ing bind that Beard (1969) describes as "fear of death and fear of

life". (p. 373)


Alterations in Life-Style

A major source of stress involved in chronic hemodialysis is the

many losses and restrictions placed on the patient that necessitate

major alterations in life-style. Wright et al. (1966) note that

patients faced the actual or threatened loss of membership in groups,

the failure of plans or ventures, loss of homes, possessions or finan-

cial status, loss of job or occupation, and other small details of a

way of life. Calland (1972), writing from the patient's point of view,

describes the restraints on travel imposed by the necessity of the










twice or thrice weekly dialysis; the fact that employers are often

unwilling to lend money for a patient to buy equipment so that the

patient can be free from the schedule of the dialysis center; how

neighbors come to regard the patient as a marginal person; and pro-

fessional and financial set-backs due to the fact that employers are

reluctant to promote a terminally ill employee, and banks are reluc-

tant to give mortgages. Jenkins (1979), also writing from a patient's

point of view, states that in dealing with the world dialysis patients

tend to second-guess themselves and thus they hesitate in their deci-

sion-making, fearing how failure will affect their self-image and

society's image of them as "non-ill." Freyberger (1973) reports a

generally diminished interest in environmental activities as patients

withdraw their energy from such pursuits and instead seek to strengthen

the inner family relationships.


Family Concerns

The families, as part of the patient's primary social system,

experience many problems to which each individual as well as the

family as a whole must adjust. Short and Wilson (1969) describe how

family members share the stresses and disappointments of the patient,

and how their lives are often constricted by the patient's condition

both chronically as well as by the day-to-day fluctuations. The

spouses must often switch roles around the home and also work situa-

tions, particularly if the patient's job has been the main source of

income. Oftentimes, the spouse may question the validity of the de-

cision to continue dialysis, and such questioning produces tremendous










guilt in the spouse. There is a decreasing amount of physical close-

ness due to worries about the shunt site, and therefore this need is

chronically frustrated. Children often become more independent and

distant from the patient. And the patient knows that all these ef-

fects are primarily due to his/her illness and the method of treat-

ment.


Interactions with Medical Staff

Dialysis patients spend a significant amount of time every week

with the medical staff, particularly the unit nurses, and thus the

staff members become very important persons in the patients' social

worlds. Even so, many writers mentioned earlier (e.g., Nadelson, 1971)

have observed the anger that patients may harbor towards the medical

staff. Calland (1972) describes how many nephrologists invariably

tell their patients they are doing fine after measuring their levels

of electrolytes and creatinine, and so the patients often stop tell-

ing the physician about how they are feeling. Nadelson (1971) sug-

gests that psychiatric consultation on a dialysis unit may be most

helpful when the consultant attends to the psychological relationship

at the interface of staff and patient, and to the "emotional tone" of

the staff requesting the consult. He states that the patient's sick

role, being resented and accepted simultaneously by the patient,

leads him/her to be very sensitive to interactions with the care-

takers. The physicians' usual lack of awareness of the importance

of this interaction originates partly in the "physical model" of










treatment, with the physician as the active agent and the patient as

the passive recipient. As such, communication of feelings is often

blocked in patients.

Just as medical staff become important persons in the patients'

social worlds, so the patients become important persons in the social

worlds of staff members, particularly nurses. Aasterund (1972),

describing hospital nurses in general, points out that many hospital

procedures and nursing care practices are viewed as intrusive and

victimizing to patients, and that nurses are often unaware of their

own anxiety about such practices since historically they have per-

ceived themselves as being supportive, caring and helpful to patients.

As a result, nurses tend to establish a social defense system which

includes the performance of ritualistic tasks in order to avoid

change, thus restricting meaningful contact with patients. Although

some of the same dynamics may be active among dialysis nurses, their

context usually leads to a different kind of interaction with patients.

After weighing-in patients and hooking them up to the machines, there

are often sizable spans of time when nurses can stop and talk with the

patients. Often the patients are there several times a week for years,

and the nurses can develop close relationships with them. De-Nour and

Czac7kes (1974a) report that observations and questionnaires from

nurses reveal they have extreme devotion to patients, a very high rota-

tion in nursing staff, and high levels of hostility towards the patients,

sometimes overt, but more often handled by denial, overprotection, and

projection. De-Nour and Czaczkes further observe that the two main










stressors for dialysis nurses are the extraordinary responsibilities

they have and the close contacts with patients on borrowed time. This

means they--the nurses--live with the constant threat of loss, and,

consequently, this can lead to insecurity and a desire to withdraw

from patients. Against these feelings the nurses respond with a reac-

tion formation of high devotion to the patients and high expectations

for the patients' functioning. The frustration of these expectations

by the situation and the patients leads to feelings of aggression which

in turn lead to a reaction formation with its consequent high levels

of devotion and expectations, and so on. A vicious circle is generated.

Short and Wilson (1969) suggest that during dialysis, patients

regress and many of them make demands on the nurses until the nurses

can no longer satisfy the patient, and consequently the nurses become

frustrated. Short and Wilson emphasize that this is a crucial period,

for if the nurses do not recognize the situation for what it is they

will either cater to every demand of the patient or ignore them. In

either case, they will feel both guilty and angry, and very possibly

reject the patient. Another element that can generate extreme frustra-

tion for medical staff is the fact that their patients are never going

to get well. They have a chronic illness and will eventually deterior-

ate no matter what the staff does. And it is precisely here that

McKegney and Lange (1971) have observed a communication gap between

patients and medical staff due to what the writers call a "dissonance

of values": the patients may prefer death, but the staff is invested

in maintaining life no matter that the quality of that life is.










Is Life on Dialysis Worth it?

Given the many stressors with which patients have to deal, the

final stressor to be mentioned is this question they must all face: Is

life on chronic hemodialysis worth it? Beard (1969) describes how

patients eventually have to face the dilemma of fearing that their

lives will be cut short by an untimely death, and yet at the same time

fearing that even if they do continue to live the conditions for that

continuation may not be acceptable. In fact, McKegney and Lange (1971)

report that many patients come to the point where life is unacceptable.

Abram, Moore and Westervelt (1971) grimly confirm this by reporting a

rate of suicide that is more than 400 times the rate in the general

population.

In a somewhat philosophical essay on the nature of dialysis pa-

tients' approach to the meaning of life and death, Norton (1969) found

a lack of abstract generalizations, or possibly a lack of awareness,

of the issue of the meaning of their lives and deaths. Patients gave

many conventional answers. But he reports that their attitudes toward

death and dying primarily centered around the negation of life--such

as being a burden on others, or not achieving what one had hoped for--

more than around the fear of death.

In any case, life on chronic hemodialysis is a compromised life,

and for some patients the compromise is unacceptable, and therefore

the prospect of voluntary termination of dialysis becomes a realistic

alternative.










Responses of Patients

That is one was of responding to the stresses of dialysis. But

for those who choose to continue to live, the question becomes one of

how to adapt to the conditions of their lives. As a kind of benchmark

against which one can judge the responses to be reported in the follow-

ing, Viederman (1978) offers the following definition: "By adaptation

I mean to include not only successful compliance and participation in

the treatment regimen without excessive constriction of the 'life

space' but also the ability to continue treatment without marked inner

suffering in the form of depression, anxiety, morbid worry, hypochon-

driasis, etc." (p. 445, footnote). Jenkins (1979) and Oberley and

Oberley (1975), writing from the viewpoint of being dialysis patients,

present an upbeat picture of life on dialysis and the very real poten-

tial for making a good adjustment to its rigors. Goodey and Kelly

(1967), on the basis of single interviews with 20 patients, report

that even though patients were very frank regarding the difficulties

of life on dialysis, "nearly all said they had learned to accept their

continuing treatment and seemed to be optimistic about becoming more

adjusted to it as time went on" (p. 148). Other patients do not

share such an optimistic point of view and present a grim picture of

what life is like on dialysis (Bronsky, 1972; Calland, 1972). Vieder-

man (1978) reports a study that, utilizing a sentence completion test,

found a marked diminution of active coping in hemodialysis patients as

compared to other groups, and attributed this to the long-term effects

of the chronic stress.










What follows is a description of the responses of patients to

chronic hemodialysis, broken down into various areas and topics. The

purpose of this review is to highlight the central question of this

investigation: namely, in the light of the realities of dialysis and

the range of responses made to it, how is good adjustment to dialysis

to be defined?

Meaning of the Illness

Although very little work in this area has been reported in the

literature, Pritchard (1979) stresses the importance of the meaning

of the illness for the patient as being the intervening variable be-

tween the givens of the situation--such as factors related to person-

ality and past experience, the nature of the illness and the current

situation--and the cognitive, affective and behavioral responses the

patient makes. He has reported (1974a, 1974b, 1974c, 1977, 1979) his

work in developing the Response to Illness Questionnaire with which

he is seeking to delineate the dimensions of meaning of illness in

general. His initial work has been with dialysis patients and car-

diac patients, and although his sample of 60 is too small on which

to run a valid factor analysis (Comrey, 1978) his results are sug-

gestive, offering hypotheses for further testing. The following

eight factors tended to emerge from his work: (1) hostility to ill-

ness as a destructive enemy, (2) distressing preoccupation, (3) help-

less noninvolvement, (4) positive appraisal and involvement, (5) sur-

render, (6) acceptance/rejection of illness, (7) fight, and (8) help-

less dependence. While these factors are spuriously derived, they do










at least suggest dimensions of meaning that can help care-giving per-

sonnel understand some of the cognitive elements that may underlie

patients' adaptation behavior. Also suggestive is a semantic differ-

ential study by Clark, Hailstone and Slade (1979) in which dialysis

patients describe their illness "as very cruel, bad, ugly and hard,

also somewhat boring, although only a little foolish" (p. 61).


Stages of Adaptation to Dialysis

Abram (1969) and Reichsman and Levy (1972) have outlined the

various stages that patients go through as they start and continue

with dialysis. Abram's schema has four phases with descriptive la-

bels: (1) The Uremic Syndrome, (2) The Shift to Physiological Equi-

librium (Dialysis)--"Return from the dead," (3) Convalescence--"Re-

turn to the living" (third week to third month), and (4) The Struggle

for Normalcy--"The problem of living rather than dying" (third to

twelfth month). Abram developed his schema at a time when dialysis

machines and units were relatively scarce, and a patient was almost

dead by the time of the first dialysis.

Reichsman and Levy (1972) noted that depressive symptoms clearly

preceded uremic symptoms by a period of weeks to three months in most

patients, usually because of meaningful losses and separations that

were occurring. Before acceptance into the dialysis program, patients

felt so helpless and dependent that they could not risk being angry.

Anxiety was relatively low compared to depression and was limited to

two areas: the possibility of being rejected from the program, and

the future care of their children. The first stage Reichsman and










Levy describe as the honeymoon period, and begins about three weeks

after the first dialysis and continues for six weeks to six months.

It is characterized by marked physical and emotional improvement

which increases the patient's confidence, hope and joie de vivre.

Patients accept the intense dependency on the machine, the procedure

and the staff. There are periodic intense episodes of anxiety about

their hemodialysis, and a general apprehension about their life ex-

pectancy and ability to return to work.

The second stage is described as the period of disenchantment

and discouragement. Its onset is often preceded by planning or

actual resumption of an active and productive role at work or in the

household. This depression leads to repeated physical complications

with the shunt, especially clotting, and thus begins a pattern that

is to occur repeatedly throughout the patient's life on dialysis:

there is a significant life stress which causes an affective change

usually of a depressive or giving-up sort, and this in turn leads to

complications with the shunt site. This period lasts from three to

twelve months, and other characteristic affects and behaviors include

feelings of sadness and helplessness, guilt over dietary indiscretions,

shame about the illness and the complications and appearance of the

shunt site, and an increase in feelings of annoyance and anger, par-

ticularly towards the staff.

The third stage is described as the period of long-term adapta-

tion in which there is some degree of acceptance. The onset is

gradual, and there are fluctuations in the sense of emotional and

physical well-being. Patients use massive denial, but are keenly










aware of their abject dependency which in turn leads to much expres-

sion of anger. Most of the anger is verbalized, although some is

acted out by tardiness and open dietary indiscretions. Patients are

striving not so much for greater independence but for more support,

particularly the males. If the staff increase their support, the

patients' anger and aggression are decreased. The perceived pressure

to become productive conflicts with the wish to continue in the de-

pendent role. Patients feel that their acceptance by the staff

actually depends on their becoming productive again.

It should be noted that the sample on which Reichsman and Levy

based their schema was small (n = 25), and most of the males were

described as chronically and characterologically very passive and

had high dependency needs. Their dialysis sample was markedly "field-

dependent" compared to control groups. Whether these same character-

istics are normative for most dialysis patients appears doubtful since

many patients seek to become productive and continue on with their

lives.


Life Satisfaction

In an intriguing study of the satisfaction with life among dial-

ysis patients and patients suffering from osteoarthritis, Laborde and

Powers (1980) used Cantril's (1965) Self-anchoring Life Satisfaction

Scale as a measure of general sense of well-being. The scale is a

ladder with 10 rungs, with the top rung being the patient's perception

of" the "best possible life," and the bottom rung being the patient's

perception of the "worst possible life," Patients were then asked to










place themselves on the ladder at the present, five years in the past

and five years in the future. For the sample of 20 dialysis patients,

who had been on dialysis an average of 31.6 months, the mean rating

for their past lives was 6.2, for their present lives was 7.2, and

for their future lives was 8.5. In other words, this sample of dial-

ysis patients sees their lives as getting better and better. However,

these rather surprising results are placed in context by a similar

study by Isiadinso, Sullivan and Baxter (1975) with a sample of 84

patients. Their patients scored significantly lower than controls on

their present life satisfaction and on their expectation of future

satisfaction.

Glassman and Siegel (1970) tested a small group (n = 7) of pa-

tients twice with the CPI and the Shipman Anxiety and Depression

Scale. On both testing, the CPI profiles approached the norm, with

males even exceeding, and demonstrated consistency over time. On the

Shipman Anxiety and Depression Scale patients had relatively low

scores, with no one being even one standard deviation from the mean.

Both these tests seem to indicate that patients score normal on a

sense of well-being, which is in direct contrast to the clinical

picture of people facing a great deal of discomfort. The authors

conclude that the patients are using "massive denial" and that this

may be dangerous since it could continue into a delusional process,

which may explain why some patients who are doing well suddenly go

on eating binges. The authors further suggest that the test data re-

flect the patients' fantasy of how they would like to be.










Defense Mechanisms

Many writers have observed the presence of denial, even "massive

denial," in the psychological functioning of dialysis patients (Abram,

1975; De-Nour et al., 1968; Freyberger, 1973; Menzies & Stewart, 1968;

Short & Wilson, 1969; Wright et al., 1966). Short and Wilson (1969)

speak of the patients' "phenomenal" capacity to deny. But deny what?

Although patients accept their condition and the inevitability of the

outcome, they deny that it is happening now. Even when bones are

bowed from osteomalacia, they continue to hope and expect reversal.

When clotting, bleeding or infection of the shunt site occur, it is

treated as a singular event. Even with the many medical complications,

the OBS that develops over the long haul and the decrease in intel-

lectual functioning, patients continue to deny that it is happening

now. Such denial can be costly. Menzies and Stewart (1968) found in

their small sample that an unfavorable factor for the development of

psychiatric complications was the excessive use of the mental mecha-

nisms of denial and dependency. Similarly, Heim, Moser and Adler

(1978) concluded in their study of Swiss country women with an

iatrogenic terminal illness that although an habitual defensive re-

sponse to general life stressors could rely on repression, denial

and reaction formation, these modes are unsuccessful in coping with

terminal illness. "Aggravators" who exaggerate their morbidity and

rely on the coping mechanisms of faith and stoicism fare better than

the "minimizers" who make light of their morbidity and use repression

and denial.










Other defense mechanisms noted by some writers (Abram, 1972;

De-Nour et al., 1968; Freyberger, 1973) are projection, intellectual-

ization, isolation, displacement, reaction formation, and even intro-

jection in which the patient turns all his/her feelings upon the self

in a self-punitive fashion. Viedermdn (1974), as noted earlier,

states that dialysis requires regression to the earliest stage of

development. However, the quality of adaptation to dialysis, as

measured by neurotic or psychotic behavior or feelings of anxiety

and depression, is "crucially affected" by the quality and degree

of conflict which reemerges and the past solutions to such early

conflicts. He suggests that adaptive regression--which is limited

regression--is possible if the patient had a "gratifying infantile

mutuality" with the mother. De-Nour et al. (1968) observed that

though the use of these mechanisms is adaptive, it leads to marked

ego constriction. Similarly, Freyberger (1973) notes how the func-

tioning of these defense mechanisms is purchased by the loss of cer-

tain emotional capacities: (1) patients have a limited ability to

show aggressive impulses, with consequent episodic or repeated de-

pressive states, (2) there is a decrease in the ability to psychic-

ally adapt to new situations, (3) there is a weakening of environ-

mental relationships in favor of strengthening the inner family

relationships, and (4) there is a marked mental preoccupation with

various consequences of dialysis.










Psychiatric Complications

Although there are numerous reports of the incidence of psychi-

atric complications in dialysis patients, it is extremely difficult

to obtain a clear and accurate picture of the actual rate and sever-

ity of such complications for the dialysis population as a whole.

The difficulty arises from several conditions. First, the sample

sizes have been extremely small, sometimes as small as 8 (Shea et

al., 1965) or 9 (De-Nour et al., 1968). Secondly, there are differ-

ent modes of gathering clinical information and rating the severity

of symptoms. Thirdly, data have been reported from different types

of dialysis centers. Among the early reports, those units that

treated individuals on a first come-first served basis (Gombos, Lee,

Horton & Cummings, 1964; Retan & Lewis, 1966) or had a research

function (Shea et al., 1965) reported higher incidences of emotional

disturbance than those units that were treatment-oriented and empha-

sized patient selection for long-term dialysis (Johnson, Wagoner,

Hunt, Mueller & Hallenbeck, 1966; Sand et al., 1966). And, fourthly,

there is the time factor. The treatment has changed somewhat over

the years, and Czaczkes and De-Nour (1978), in their review of the

literature in this area, come away with the impression that at least

psychosis was more frequent in the early days than at the present.

To give some idea of the effect of these four factors on the

reported rate of emotional maladjustment to dialysis, Armstrong (1978)

found in reviewing 19 studies that the range of incidence of "poor

emotional adjustment" in adult dialysis patients is from 0% in a










completely screened sample (Abram, 1969) to 88% (Shea et al., 1965),

with the median being 46%. Even when the same investigator reports

her findings from two different groups from different periods of in-

vestigation, the results can differ widely. De-Nour et al. (1968),

after studying a group of 9 patients for one year, reported that the

patients were quite content, that they continued to function in

everyday life more or less as before (compare this with Reichsman

and Levy's (1972) sample of chronically and characterologically

very passive male patients who did not want to return to work), and

were nearly free of psychiatric symptoms, including anxiety. But

then, twelve years later (De-Nour & Shanan, 1980), in comparing a

group of dialysis patients with a group of kidney transplant patients,

the investigators found that only 35% of the dialysis patients were

free of psychiatric complications.

To briefly summarize the available evidence on the psychiatric

complications of dialysis, Czaczkes and De-Nour (1978) suggest

dividing the area into four major problems. First, psychosis. On

the basis of their review of the literature, Glick, Goldfield and

Kovnat (1973) suggested that the pathogenesis of the whole spectrum

of psychotic disturbances, ranging from OBS through schizophrenic

syndromes usually without thought disorder to psychotic depression,

was related to the rapid metabolic changes involved in dialysis

together with environmental stresses. In Levy's (1976) review of

the literature, he concluded that psychosis is a relatively uncommon

response, that it is sometimes part of an organic reaction to medical









and surgical complications, and for those who were psychotic before

beginning a dialysis program their psychoses continued and worsened.

Czaczkes and De-Nour (1978) report that their experience has been

that non-severe psychotic symptoms are quire frequent in the course

of dialysis and that they are of a paranoid character and often com-

bined with depression. Such symptoms tended to increase mortality

by noncompliance.

Second is anxiety. Reports of anxiety also span the entire range

of rate and severity, with Isiadinso et al. (1975) reporting prominent

anxiety in all the patients studied, while Cazzullo, Invernizzi,

Ventura and Sostero (1973) found frequent anxiety at the beginning of

dialysis but that over time patients developed defenses against the

anxiety. Psychological test measures of anxiety yield normal results

(De-Nour et al., 1968; Fishman & Schneider, 1972; Glassman and Siegel,

1970), but clinical manifestations of anxiety while on dialysis in-

clude insomnia, difficulty in concentration, and excessive masturba-

tion in some patients. The most important adverse consequence of

anxiety while on dialysis is the shortening of dialysis hours; but

we lack sufficient information at this time to know how frequently

this happens.

Third is depression. The reports on this particular psychological

difficulty generally agree that depression is the most common psychi-

atric complication (Lefebvre et al., 1972), and that the majority of

patients on dialysis suffer from it (Czaczkes & De-Nour, 1978). One

enlightening study, based on the reports from patients' families, who










have kncwn the patients for years prior to dialysis and see them when

their social facades are lowered, indicated that more than 90% of the

patients were depressed (Friedman, Goodwin & Chaudhry, 1970b).

Fourth is suicide. Again, this is an area that presents different

pictures depending on what one includes under suicide. In the clas-

sic study of suicidal behavior in chronic dialysis patients, Abram

et al. (1971) reported on the results from a sample of 3,478 living

and dead dialysis patients from 127 dialysis centers. They found

that the main means of suicide consisted of exsanguination, overdos-

age, and food-drink binges. However, when the authors included with-

drawal from the dialysis program and death through not following the

treatment regimen along with the direct successful suicides, they

found a suicide rate that was more than 400 times that of the general

population, or, in other words, about 5% of the dialysis population.

If the authors did not include death through not following the treat-

ment regimen, the incidence of suicide was more than 100 times that

of the general population. They found a higher incidence among cen-

ter patients than home dialysis patients and that a higher percentage

of males than females attempted and completed suicide. They suggest

that some of the precipitating factors of suicide were loss of family

support at an emotional level, rejection or loss of an allograft, and

for mpn the threat of passivity and inactivity. Siddiqui, Fitz,

Lawton and Kirkendall (1970), reporting on one unit, found that 5%

of the patients died by suicide. However, their sample was small.

Cadnapaphornchai, Kuruvila, Holmes and Schrier (1974) found one cen-

ter where over a period of five years, 40, of the deaths were from










voluntary termination of dialysis. However, Parsons (1978) found that

less than 1% of a sample of 400 dialysis patients fell into the cate-

gory of voluntary termination of dialysis. Czaczkes and De-Nour (1978)

believe that self-inflicted damage by abuse of the diet and voluntary

withdrawal from treatment should not be included in suicide statistics

since these behaviors have special features that underlie them. Their

conclusion is that the frequency of attempted and successful suicide

is probably "not very high" but that the frequency of suicidal idea-

tion is "very high," which indicates the quality of life of dialysis

patients.

By way of summary, Oberley and Oberley (1975) suggest that most

of the psychological problems experienced in dialysis are related to

patients' pre-dialysis modes of coping, and that the stresses engen-

dered by dialysis simply highlight the emotional/psychological

strengths and weaknesses the patients bring to the situation.


Self-Concept

Several writers have emphasized the importance of the self-concept

and level of self-esteem in coping and adaptation (for example, Coelho,

Hamburg & Adams, 1974), but there is little information available on

tie self-concept of dialysis patients. Clark et al. (1979) measured

patients' self-concept using the semantic differential techniques.

Out of 16 dimensions, dialysis patients significantly differed from a

control group on only one: dialysis patients saw themselves as being

"truer," The authors suggest that this result indicates that while,










in general, dialysis patients do not see themselves as much different

from normalss," they do possibly consider themselves as having reached

a purer state of being or that their illness denies them the chance to

convey a false image to the world. When they compared the results of

patients who had been on dialysis for seven to fourteen years with

those of patients on dialysis for zero to four years, they found that

the mean self-rating (with little variation) of the long-term group

was towards the "strong" end of the weak-strong dimension, while the

mean self-rating for the short-term group was towards the "weak" end.

However, this study was cross-sectional rather than longitudinal;

consequently, it may be the case that the strong ones survive, while

the weak ones die early.

Mlott (1976) examined the fantasy life and self-esteem of dial-

ysis patients and their spouses. Not surprisingly, he found that

patients used fantasy more than their spouses did. The author sug-

gests that the high use of fantasy is associated with low self-esteem,

and may be a substitute for real communication since it is an easy way

of overcoming frustration. Patients frequently engaged in guilt fan-

tasies in which they were punished either for past sins and present

feelings of anger toward the treatment team, or for envying others

who were not equally disabled. Female patients made greater use of

fear of failure fantasies than did male patients. This result is the

opposite of Singer and Antrobus's (1972) finding that this content

area is more typical of males' fantasies than females'. This result,

ccrnbined with the fact that particularly the females in the sample










had lower self-esteem than did their spouses, leads Mlott to suggest

that females' reaction to renal failure is more adverse than that of

males.

Shanan et al. (1976), using a sentence completion test, found

that dialysis patients show a diminution in self-esteem. At the same

time, they show an increase in narcissistic preoccupation as well as

a marked decrease in active coping. Shanan et al. interpret the en-

tire phenomenon as a shift from an internal to an external locus of

control.


Locus of Control

In the initial study of locus of control in dialysis patients,

Goldstein and Reznikoff (1971) noted that in Abram et al.'s (1971)

study of suicidal behavior 117 of the 192 suicides were accomplished

by "food-drink binges." Instead of interpreting this binging as sui-

cidal, Goldstein and Reznikoff suggested that in an attempt to cope

with the continuous responsibility and anxiety of keeping one's self

alive by following a rigid treatment regimen, dialysis patients

adopt an external locus of control which allows them to no longer

perceive their behavior as life-sustaining, and thus a large, threat-

ening area of responsibility is avoided. The investigators found that

dialysis patients had a significantly more external locus of control

than did a control group of patients in the convalescent stage of a

minor medical condition. One of the dynamics operating in the condi-

tion of dialysis patients is that they do not expect a return to










health as treatment progresses, and so their sense of mastery never

returns. The authors further note that although this sense of an

external locus of control through which patients perceive their be-

havior as having little or no effect on their condition can help

them avoid the constantly intruding reminders of their tenuous hold

on life, it can also have disastrous consequences when their coopera-

tion is essential for survival. If the patients perceive their be-

havior as unrelated to their condition, it increases the likelihood

that they will reject their role in treatment. However, an alterna-

tive hypothesis for binging is that it is rebellion against the

rigid control that the dialysis treatment imposes upon them. That

is, it may be an aggressive acting-out rather than a helpless act.

We will return to this idea in the next section on compliance.

In a study that investigated the relationship between locus of

control and adjustment to dialysis, Poll and De-Nour (1980) also found

an overall mean locus of control score (10.95) which they interpreted

as being indicative of an external locus of control. This is similar

to results in other studies (Foster, Cohn & McKegney, 1973; Goldstein

& Reznikoff, 1971; Kilpatrick, Miller & Williams, 1972; Todd & Kopel,

1977; Wilson, Muzekari, Schneps & Wilson, 1974). They split their

sample at the median to yield one group with internal locus of control

(X = 13.65) and compared the two groups on the following aspects of

adjustment: (1) compliance with food and dietary restrictions, (2)

vocational rehabilitation, with patients who were working at least

half-time being rated as working, while those rated as nonworking










were usually doing nothing, and (3) acceptance of disability. The re-

sults indicated that locus of control was significantly correlated with

all three aspects of adjustment. Internals were significantly more

compliant and accepting of their disability than were externals; and

75% of the internals compared to 35% of the externals were working.

Interestingly, locus of control was not correlated with length of

time on dialysis, which suggests that, contrary to Goldstein and

Reznikoff's (1971) hypothesis, patients' sense of locus of control

does not shift during the course of treatment. Poll and De-Nour

speculate that the shift occurs predialysis, but that based on this

study such a shift is not adaptive in terms of adjustment.

Viederman (1978) also, while acknowledging that locus of con-

trol is not an imi;utable constellation of character traits, neverthe-

less suggests that it has a slow rate of change and is less likely to

shift qualitatively in an entire group of patients subjected to the

same experience, although he does not deny changes may occur to a

greater degree in individual patients. In his experience, patients

with a well-integrated internal locus of control find opportunities

for effective adaptation to treatment:

in essence, the treatment becomes an extension
of themselves and they experience themselves
as the prime movers rather than the controlled
objects of an overwhelming life experience
which dominates them. This is to be contrasted
to patients who may superficially appear to
utilize control, but who actually use it as a
rather fragile defense against helplessness or
distrust.(p. 464)










[However,] the very patients who rely com-
fortably on their own activity for adaptation
are most likely to experience intense crises at
certain moments during the treatment before they
can integrate the treatment process as part of
themselves. (p. 465)

He also notes that patients with an internal locus of control also

experience less depression.


Compliance

Dietary compliance involves adhering to the restrictions of the

kind of food patients eat and the amount of liquid they are allowed to

consume. In a sample of 31 patients followed for six months, Procci

(1978) found that only 39% of the patients were good compliers while

the rest (61%) were poor compliers. Similarly, De-Nour and Czaczkes

(1972) found that 65% of their sample of 43 patients were diet abusers,

with 47% being rated as severe abusers. These rates of dietary abuse

are not surprising in light of the fact that treatment programs fo.

chronic, severe illnesses that require a substantial modification of

personal habits and interfere with daily activities--as does the regi-

men involved in dialysis treatment--are regularly associated with high

levels of patients' noncompliance (Blackwell, 1973; Davis, 1968).

Davis and Eichhorn (1963) also report that in illnesses with multiple

regimens, those regimens that involved the least amount of change or

discomfort to the patient had a higher probability of being followed.

Procci echoes the ideas of others (Goldstein & Reznikoff, 1971; Foster

et al., 1973) that dietary abuse among dialysis patients may serve

some adaptive function; but he suggests that it may be a substitute










form of gratification in individuals who have very little reinforce-

ment in their lives. Levy (1979) suggests that lack of cooperative-

ness in general may be partially due to the lack of respite from the

regimen.

In studies that have looked for factors that correlate with

dietary compliance and abuse, the results are sometimes contradictory.

De-Nour and Czaczkes (1972), in a sample of 43 patients in which 65%

were abusers and 47% were severe abusers, found that low frustration

tolerance and primary gain from the illness were factors correlated

with dietary abuse, while factors that were not correlated with abuse

were denial of sick role, acting-out, suicidal intent, and family

homicidal wishes. However, in a later study (1976) of 136 patients

over a three year period, they concluded that dietary abuse was

caused by the denial of sick role, the acting-out of aggression, and

the introjection of aggression via depression and suicidal tendencies,

as well as by low frustration tolerance and gains from the sick role.

They also found in this latter study that dietary compliance was pro-

moted by obsessive-compulsive traits, while Winokur, Czaczkes and

De-Nour (1973) found that compliance was also related to the ability

to continue working but unrelated to IQ.


Vocational Rehabilitation

Rehabilitation has often been used as a criterion of adjustment

for dialysis patients, and many centers make it their aim to get

patients back to work. Some writers (for example, Levy & Wynbrandt,

1975) have used it as an index of the quality of the patients' lives.










The assumption is that a good quality of life is associated with resum-

ing the life activities in which the patient was engaged before begin-

ning dialysis. One of the problems in comparing studies is the differ-

ent sets of criteria used for complete, partial and no rehabilitation.

In reviewing 13 studies on the subject and trying to organize their

results into comparable categories, Czaczkes and De-Nour (1978) found

that the level of vocational rehabilitation of center dialysis patients

was "poor." Twelve of the 13 studies reported full vocational reha-

bilitation in between 29% and 56% of the patients. The question then

becomes one of explaining such a poor outcome in light of medical

staffs' implicit or explicit push in that direction, and the fact that

most patients are judged to be in sufficiently good physical shape to

work.

Two reasons can be suggested. First, Friedman et al. (1970a)

calculated that 31% of patients' 5-day work-week is spent by actual

dialysis or activities necessitated by the treatment. Gainfully

employed patients had to reduce their work hours to a mean of 29

hours per week. These results suggest that dialysis patients are

literally too busy with their dialysis to be employed full-time. A

second reason comes from the work of De-Nour and Czaczkes (1974b).

They found that three out of seven physicians grossly overestimated

their patients' level of vocational adjustment, which suggests that

some physicians appear to use denial in assessing their patients'

condition and rehabilitation.









The conditions that promote or impede vocational rehabilitation

were also studied by De-Nour and Czaczkes (1976). They found that re-

jection of normal or high dependency needs, satisfaction with work,

and an active sick role all promoted vocational rehabilitation, while

the opposites of these three conditions impeded it.

In summdrizing the varied reports on different aspects of voca-

tional rehabilitation, Czaczkes and De-Nour (1978) draw the following

picture. The rehabilitation of home dialysis patients is greater

than that of center dialysis patients (around 70% and 40%, respective-

ly). Rehabilitation does not significantly improve with time, and

the efficiency and satisfaction of patients with their work is often

reduced. For some patients, rehabilitation is very important, while

others enjoy not working and even develop psychiatric complications

if pushed or "forced" to work. And, finally, social rehabilitation

appears to be related to vocational rehabilitation.


Home Dialysis

Many studies have documented the superiority of patient adjust-

ment to home dialysis as compared to center dialysis (Blagg, 1972;

Blagg, Hickman, Eschbach & Scribner, 1970; Gross, Keane & McDonald,

1973; Malmquist & Hagberg, 1974; Moorehead, Baillod, Hopewell, Knight,

Crockett, Fernando & Varghese, 1970; Rae, Craig & Miles, 1972; Speidel,

Koch, Balck & Kniess, 1979). This consistent superiority is at least

in part due to the careful screening with which patients are selected

for home dialysis training. Although in a sample of 58 patients

entering home dialysis Lowry and Atcherson (1979) found 13%










who would be diagnosed as having a depressive disorder according to

the criLeria of DSM-III, Farmer, Snowden and Parsons (1979b) found no

more psychiatric morbidity in their sample of 32 home dialysis patients

than in patients attending a general practicioner's surgery. Frey-

berger (1973) found that in comparison to center dialysis patients,

home dialysis patients had a striking quantitative reduction in psy-

chic troubles and a qualitative increase in their mastering of psychic

troubles. They see the machine as a reliable object and this leads to

a decrease in feelings of dependency and an increase in inner feelings

of sovereignty. They have a strong motivation towards being productive

and employing themselves intellectually during the dialysis procedure,

and this results in a decrease in unpleasant tensions. Because they

are not repeatedly interacting with other patients they lack any know-

ledge of the traumatizations of other patients, which also decreases

tension. Furthermore, because they are on their own schedules they

can arrange them to their own liking so they can be more involved in

environmental activities, and they can dialyze longer, which means

they can be less strict about their diets. Home dialysis patients

have a lower rate of accidents and complications, and those emotional

capacities which had decreased in center dialysis tend to increase on

home dialysis.

As alluded to above, one of the reasons home dialysis patients

fare better on the average than center dialysis patients is the screen-

ing process patients must pass through before being trained for home

dialysis. Shaldon (1968) has stated categorically that "home dialysis










for chronic renal failure will only succeed if the patient can come to

depend on himself rather than on hospital staff or relatives". (p. 520)

Although on the surface it may appear that home dialysis would be the

treatment of choice for most patients since it encourages both active

participation in medical care and economical delivery, the issue is

not so simple, and, as Rusk (1978) points out, there are many psycho-

logical realities centering around the issues of dependence-independ-

ence, activity-passivity, control and mastery that need to be taken

into account when evaluating prospective patients for home dialysis.

First, a facade of independence--what Rusk calls pseudo-independence--

may represent what is actually a hypervigilant, suspicious need for

control that may bring the patient into conflict with the staff.

Secondly, chronic illness and treatment may be so stressful that

patients may not be able to muster their adaptive resources. Third,

other patients who are very capable of self-care may be so embittered

by their illness that they feel entitled to be taken care of. Fourth,

control and mastery are very important for patients' sense of well-

being, but the circumstances that provide this sense of control vary

among patients so that the more passive, dependent patients feel bet-

ter and more secure when others assume the responsibility for their

care--and such patients are quite willing to delegate that role to a

responsive, competent care-taker, whether staff member or relative--

while the more active, independent patients feel best when they play

a large role in their own care. A fifth issue is that if the home

dialysis partner is more active and dominant than the patient, this










may undermine the patient's commitment and responsibility for treat-

ment and lead to potential conflict.

This last issue highlights the importance of the patient-partner

relationship for the success of home dialysis. Bailey, Mocelin,

Hampers and Merrill (1972) have identified four basic patterns of

reaction among home dialysis pairs. (1) Sharing: the majority of

home dialysis pairs share the good and the bad, are mutually sup-

portive and rarely allow psychological hindrances to treatment. (2)

Obsessive-compulsive: if one or both partners is extremely careful,

the patient and partner do extremely well on dialysis for years, and

have the fewest complications and longest shunt survival. (3) Parent-

child: this relationships develops when there is pathologic dependency

leading to infantile regression. The dominant partner must be willing

to accept the role of parent. (4) Master-slave: Bailey et al. describe

this as an exaggeration of a pre-existing domestic relationship, with

the spouse (usually the wife) being little more than a servant. In

such a situation the patient refuses to participate in training, ex-

pecting the partner to take care of it. As a result, the partner

becomes progressively more depressed, nervous and forgetful, is unable

to sleep, develops an agitated depression, and eventually drops out of

training.

However, even with careful screening that attends to the basic

psychological realities of home dialysis, adjustment is not always

good. Brown, Feins, Parke and Paulus (1974) found four areas in which

well-adjusted home dialysis patients differed from poorly-adjusted










patients. Well-adjusted patients minimized their losses and emphasized

the capabilities they still retained. They tended to be achievement-

oriented. By contrast, the less well-adjusted patients were more aware

of their reduced capacities because dialysis curtailed all the activi-

ties that were important to them. They tended to be centered on phys-

ical activities before dialysis became necessary. A second area

involved financial resources. Well-adjusted patients had stable,

secure, private resources while poorly-adjusted patients were barely

supported by public funds that often seemed at the whim of unknown

bureaucrats. A third area involved the role and relationship with the

partners. Good partners generally made for a better-adjusted patient,

although some patients with very helpful partners never seemed to rise

above the problems of dialysis. And, finally, well-adjusted patients

were able to develop a sense of independence from the machine so that

they could center their lives on other concerns, while the less well-

adjusted patients continually felt tied to the machine and were pre-

occupied with their treatment.

Not surprisingly, survival on home dialysis is related to many of

the same factors involved with survival on center dialysis. After

following a group of home dialysis patients for 3.5 years, Farmer,

Bewick, Parsons and Snowden (1979a) found that the following were sig-

nificantly related to survival: low psychiatric morbidity, low physi-

cal symptomatology, a history of good relationships with both natural

parents in childhood, the presence of a coping spouse, and full-time

employment or housework.









As a concluding note on home dialysis, a national survey of pa-

tients and partners by Bryan and Evans (1980) found that more than

50% of the partners had assisted patients for more than three years,

which indicates that a stable relationship is possible on home dial-

ysis. Even though machine problems are a continuing major dislike

among partners, 92% expressed little or no worry over them.


Responses of Medical Staff

Nurses' Response to Dialysis Treatment

Dialysis nurses are a special breed of nurses. According to

Moore (1972), who is a psychiatrist working with a dialysis-trans-

plant program, they feel very strongly about their role, that it is

"big league nursing" on a par with PAs or ICU nursing. They see

themselves as being more confident, brighter and more able to make

independent decisions than regular medical/surgical nurses. Dial-

ysis nurses get closer to their patients, and feel that dialysis

nursing is a particularly stressful specialty within nursing. They

are the first ones, usually, to be the recipient of the patients'

psychopathology. They must tolerate extreme dependency, some of

which is laden with hostility, and be able to de-code the messages

of patients in order, for example, to distinguish hostile manipula-

tion from a genuine need to be taken care of. Although the nurses

intellectually understand that dialysis is an intervention in a

terminal situation, they invariably struggle when it becomes clear

that the patient has reached the end-point of tolerance and that

discontinuation of life would be the most merciful thing.









Usually, dialysis units seek to establish a friendly, family at-

mosphere. Klenow (1979), using Mauksch's (1973) schema of medical

staff ideologies, suggests that there are four factors that help nurses

in developing this caring atmosphere: the physical layout of the unit

often keeps people in contact; the nature of the routine allows gener-

ous amounts of time for interaction; the serious nature of the illness

helps sustain personalized relationships; and the units recruit person-

nel who fit the care-ideology.

However, even though the goal is care-giving within a friendly at-

mosphere, other dynamics are at work. Goldstein (1972) and Short and

Wilson (1969) point out the frequent use of denial in the treatment

staff's perception of their jobs and patients. In a seminal work by

De-Nour and Czaczkes (1968), a picture is drawn of the unconscious

emotional reactions of medical teams, especially nurses, on dialysis

units. Particularly in the early days of dialysis many patients were

refused dialysis due to lack of available machinery. Such a situation

engendered tremendous guilt in the staff, and led them to push

patients to be "better" men and women--more successful, more diligent,

more understanding--than they were before the illness in order to

prove the correctness of the staff's selection and thereby reduce the

staff's feelings of guilt about the prospective patients they turned

away. A second emotional reaction is often possessiveness. Nurses

sometimes react hostilely to the entrance of a psychiatrist for fear

that he/she will take part of the patient away from them. There is a

constant latent struggle between nurses and technicians over who is

more important to the patients, to whom do patients confide more, and










who do they obey. Nurses even seemed jealous over the patient's free-

dom or request for more freedom. A third reaction was one of overpro-

tectiveness, where nurses took the role of the over-protective mother,

the chief of the unit was cast in the role of the bad, demanding

father, and the patients were the children. Such a set-up sometimes

led to open clashes. A fourth reaction observed was withdrawal, as

manifested in the high turn-over rate of nurses and the immediate

withdrawal from patients who were refused dialysis.

De-Nour and Czaczkes state that the major stressors for nurses

are the insecurity due to more responsibility and independence, and

the hostility and unconscious aggression that underlie the over-pro-

tectiveness. Although they are not certain of its sources, the

authors suggest it is in part due to the fact that patients take the

hard work of the nurses for granted, and that it is difficult to form

satisfactory warm relationships with patients. The authors feel that

the team's aggression is still a major unsolved problem, although it

must be pointed out that these observations were made in the early

days of the managing of dialysis units.

By way of summary, it is perhaps clear now that although the

aim of the nursing staff is to devote themselves to quality patient

care in a specialty that requires great nursing skill, the psychologi-

cal realities of the dialysis situation may sometimes defeat them in

this purpose. It takes a psychologically sophisticated, mature and

giving individual to survive being the provider of dialysis treatment

and make a good adjustment to that role. Group meetings may be









helpful. Eisendrath, Topor, Misfeldt and Jessiman (1970) report on

the use of service meetings that include all the staff in an inter-

active group free from rigid hierarchy. The emphasis was on opening

communication, and the results were an increase in staff morale and

quality of patient care. "In fact, the only alternative to regular

meetings are irregular blowups, 'air clearing' confrontations, and

periodic turnover of the nursing staff" (p. 58).


Medical Staff's Perception of Patient Adjustment

Because medical staff play a leading role in the treatment regi-

men of dialysis patients, an issue of central importance to the qual-

ity of patient care is the staff's perception of how well their

patients are doing in adjusting to the rigors of dialysis since it is

on the basis of this perception that staff members may vary their

interaction with patients. In the light of the importance of this

issue, it is disturbing to find "pronounced disagreement" between

team-members and patients in their perceptions of how well patients

were doing with various aspects of dialysis treatment, but such is

the report of De-Nour and Czaczkes (1971). These authors investigated

one unit consisting of nine team members and eight patients. Although

on the one hand it is risky to generalize from such a small sample,

on the other hand the small numbers would suggest that this was a unit

in which staff members knew their patients particularly well because

of ample opportunityfor interaction. The investigators distributed a

20-.item questionnaire covering five main problem areas of dialysis:










diet (three items), dialysis procedure (three items), physical condi-

tion (three items), emotional condition (five items), and restrictions

and dependency (five items). Members rated each of the patients on

each item, and patients rated themselves on each item. The only

aspect on which there was statistically significant agreement between

staff and patients was physical condition. On all other aspects

there was "pronounced disagreement," Furthermore, team members varied

in their opinions as to the amount of suffering of individual patients,

although they tended to agree on which patients were suffering more

and which less. Nurses tended to evaluate patients as having much

more suffering than did the physicians and particularly the psychi-

atrist! The investigators suggest that this variability of team mem-

bers' perceptions of patients may underlie the wide discrepancies

among reports on patients' adjustment in the literature.

In a later study, De-Nour, Czaczkes and Lilos (1972) found that

although some teams do have agreement among themselves as to what

aspects of dialysis treatment are important for good patient adjust-

ment, they do not agree on precisely what to expect of the well-ad-

justed patient. For example, team members may agree that it is

important for patients to work, but they may not agree on how much a

patient should be expected to work. In such a case, the authors

suggest that the patients receive mixed signals from the staff, and

this contributes to noncompliance with the regimen. Furthermore,

lack of team agreement may lead to team dissatisfaction and the









development of a negative emotional atmosphere in the unit. Similarly,

in another study (1974a), De-Nour and Czaczkes found that nurses over-

estimated patients' compliance, and this led to the patients actually

doing worse. Also, when teams had low expectations regarding patients'

employment, the patients functioned at a lower level.

In a further study of team bias in the assessment of patients,

the same authors (1974b) again found that there was good agreement

among a sample of nephrologists in describing the good (not ideal) di-

alysis patient. However, when it came to assessing their own patients,

the nephrologists overestimated how well their patients were doing,

and the authors suggest that the only explanation for this is denial

on the part of the physicians due to the stressfulness of the situa-

tion for them. The physicians generally do not expect dialysis to be

frightening or stressful for their patients, and expect them to feel

as physically fit as before and to describe their symptoms with neither

exaggeration or dissimulation. The authors ask if these are realistic

expectations, because the sad fact is that high physician denial cor-

relates with poor patient adjustment. The authors further suggest

that the direction of causality is from physician to patient.

Foster and McKegney (1977-1978) portray a different aspect of

the impact of medical team's perception of patients on patient adjust-

ment. They report on a unit where the nurses unconsciously split pa-

tients into "good" and "bad" patients and placed them into two differ-

ent groups ostensibly on a random basis. However, although the two

groups did not differ significantly in biological or demographic










parameters at the time of their entry into the program, the "bad"

group had significantly more deaths, a higher density of psychopath-

ology and increasingly received poorer quality care from the nurses.

A recent report by Tucker, Mulkerne, Panides and Ziller (1981)

is congruent with the picture that is emerging of staff's perceptions

of patient adjustment. They, too, found some agreement among nurses

of what aspects are important for the patients' adjustment to dial-

ysis. Furthermore, they found that patients who were perceived as

being well-adjusted tended to be liked more by the nurses than were

the patients who were perceived as less well-adjusted. The authors

suggest that nurses may give a differential quality of care to pa-

tients according to their perception of the patients' adjustment and

their consequent like or dislike of the patients; but such a hypothe-

sis needs further investigation.


Staff-Patient Interaction

All the studies reviewed in the last section suggest ways in

which the staff's perception and expectations of patients' adjustment

affect the patients and the interaction between staff and patients.

Further reports of how staff can and often do interact with patients

in a fashion that is unfavorable for patients' progress and rehabili-

tation are found in Glassman and Siegel (1970), Halper (1971),

McKegney and Lange (1971), and Short and Wilson (1969).

The situation is not unique to dialysis nursing. Aasterud (1972)

observed anxiety in nurses in a general hospital setting that led to a

variety of maladaptive defenses that restricted meaningful contact









with patients. The impact on patients is that they refrain from com-

municating with the nurses about their fears, thoughts and desires

(Johnson, 1979; Skipper, 1965; Tagliacozzo, 1965). Nadelson (1971)

suggests that in a psychiatric consultation in a hospital setting

the psychiatrist is most helpful when he/she attends to the psycho-

logical relationship at the interface of staff and patient, and to

the "emotional tone" of the staff requesting the consult. To focus

on the patient would be to restore the agent-recipient, active-pas-

sive polarity between staff and patient which is part of the problem,

and to miss the fact that the staff is actually trying to turn from

their own unwanted affective involvement with the patient.

The dialysis situation adds the dimension of chronicity to

staff-patient interaction. As a result, patients do not have to

make a temporary adjustment to the various styles of interaction

with staff; they have to make a permanent adjustment. Wertzel,

Vollrath, Ritz and Ferner (1977) found that even though patients

and nurses have a mutual desire for more communication and trust,

there is marked depression in both groups as well as aggression in

the nurses, both of which are, in part, attributed to disturbances

in the interpersonal communication between patients and staff. Pa-

tients feel dominated by the nurses, and nurses feel little gratifi-

cation due to the lack of social resonance in the patients. Arm-

strong (1975) notes how nurses respond with anger and anxiety over

time to adolescent patients who manifest dependency, depression, and

an inability to emerge from their families. Alexander (1976) presents










a detailed analysis of how the dialysis situation actually puts pa-

tients in a double-bind. On the one hand, the staff's primary direc-

tives to patients are to "be independent," "be normal" and "be

grateful" while, on the other hand, the whole situation of the ill-

ness and treatment direct the patient to be dependent, to realize

that he/she is definitely not normal, and to face horrendous problems

for which it is hard to be grateful.


Responses of Families

In a very real sense, families undergo dialysis along with the

patients since the lives of the family members and the family as a

whole are often radically changed. Many of the restrictions placed

on patients are shared by their families, such as the restrictions

on travel and physical activity, and the financial constriction that

is often experienced. Family members and family constellations also

undergo psychological change. Speidel et al. (1979) found that not

only patients but also their partners described themselves as more

attractive, more respected, more capable of pushing through their

viewpoint, and more interested in their appearance--before beginning

dialysis. Both patients and their partners currently felt more so-

cially incompetent; and patients saw their partners in a more favor-

able light (more attractive and socially resonant) than partners saw

themselves. Shambaugh, Hampers, Bailey, Snyder and Merrill (1967), in

a foundational study of emotional disturbances in spouses of home dialysis

patients, found spouses stressed by multiple losses and frustrations,

particularly the patient's psychological regression and possible death,









to which they responded with feelings of deprivation and hostility.

While operating the machines spouses not only had to cope with pa-

tients' unusual dependency, but also with their own murderous fanta-

sies. Some spouses manifested regressive reactions in the form of

serious depression, excessive closeness, denial and avoidance.

The authors also report much displacement of anger unconsciously

directed at patients.

Several writers have reported evidence that unresolved family

tensions and difficulties may not only exacerbate an illness but

also undermine patient compliance with the treatment regimen (Chen

& Cobb, 1960; Mabry, 1964; Minuchin, Baker & Rosman, 1975), while

other studies emphasize the circular process between family patterns

and physical illness (Grolnick, 1972; Leigh & Reiser, 1977). A re-

cent study by Steidl, Finkelstein, Wexler, Feigenbaum, Kitsen, Kli-

ger and Quinlan (1980) provided evidence for the fact that mature,

open, positive interactions and structure in the families of dial-

ysis patients are correlated with adherence to the treatment regimen

and a relatively positive medical assessment. Pentecost (1970) and

Pentecost, Zwerens and Manuel (1976) investigated intra-family com-

munication, and focused on the expliditness of each family member's

verbal statements and the manner of taking responsibility for one's

own statements. He found in a sample of 40 adult home dialysis pa-

tients that family attitudes, specifically the ability to express

one's personal identity and to have it accepted by the rest of the

family, was associated with adjustment to dialysis.










However, many families do not react in a mature manner. Mass and

De-Nour (1975) found that in the seven families of their sample who

allowed themselves tu be interviewed, there was a striking lack of

empathy as well as hostility between the parents, while they mani-

fested a great deal of hostility against the human environment--medi-

cal staff, friends, extended family--and suppressed the expression of

empathy in the children. The investigators' major impression from

these seven families was that they had given up. As one wife put it,

"We are trapped and no outsider can open the trap for us" (p. 24).

Maurin and Schenkel (1976) also found that the majority of the famil-

ies in their sample manifested primary levels of very positive affect

towards each other with a minimal expression of ambivalence. In fact,

the spouses were over-involved with each other and families were very

family-centered. The authors suggest there may be unexpressed anger,

frustration and guilt, which in turn leads to more involvement. When

families were asked about the responsiveness of patients to receiving

communication about the needs of others, only four out of 20 patients

were seen by their families as being appropriately responsive. Al-

though patients expressed great concern for the needs of nonafflicted

family members, there was only minimal demonstration of it. Patients

manifested a great deal of control over their families.

Some work has been done in the area of assessing the marriage

relationships of dialysis patients, with most of the effort being

focused on the sexual relationship (Abram et al., 1975; Levy, 1973,

19/4; Steele et al., 1976). But information on other aspects of the









relationship appears to be sparse. Finkelstein, Finkelstein and Steele

(1976) used a marital questionnaire on 17 stable dialysis patients and

their spouses. They found nine of the 17 couples reported multiple

areas of serious marital conflict comparable to that found in patients

seeking marital counseling, and the authors interpreted this as severe

marital discord. Yet when the patients were asked for a global assess-

ment of their marriages, 88% of the couples rated their marital prob-

lems as of minor importance and their marriages as basically satisfac-

tory. In another report, this same group of researchers (Steele et al.,

1976) found no correlation between marital discord and the patient's

depression or problems with intercourse.

In a study of satisfaction with family life, Friedman et al.

(1970b) found that only five of 13 spouses felt family life had been

worthwhile since dialysis began, but the majority felt that the rela-

tionship with the patient was closer and better than before. Holcomb

and MacDonald (1973) found that 87% of the spouses in their sample

said they enjoyed family life, even though many of them showed many

psychopathological reactions. Czaczkes and De-Nour (1978) explain

such apparently contradictory findings as being the result of the use

of denial and reaction formation while the spouses' basic attitude

towards the patient is extremely negative and hostile. Furthermore,

Short and Wilson (1969) contend that a family that continually denies

the impact of its dialysis problems cannot function effectively.

Steele et al. (1976) explain the apparent contradictions by suggest-

ing that for dialysis families, the dialysis problems eclipse the









other family problems that normally would have led to the seeking of

professional help or separation.

There is little information on the reactions of the children of

dialysis patients, and what is available is contradictory. For exam-

ple, whereas Friedman et al. (1970b) found that there was no great

impact on children, Tsaltas (1976) reported that all 15 of the chil-

dren of home dialysis patients in her sample showed depressive and

hypochondriacal MMPI profiles and severe disturbances in their human

figure drawings. Mass and De-Nour (1975) found that children of cen-

ter dialysis patients were often ashamed of their parent's illness.

In closing this section, it should be noted that interventions

are often made for distressed spouses, couples and families. A rath-

er poignant finding in this regard is reported by Shambaugh and Kan-

ter (1969). They describe group meetings with some spouses of dial-

ysis patients. The group progressed from an initial state of panic

and denial to one of more openness and interaction among the members.

However, they progressively increased their sense of emotional sep-

arateness from their partners as they lessened their reliance on

denial.


Predicting Adjustment

Predicting prospective patients' adjustment to dialysis has been

a goal of medical staffs ever since the inception of this treatment

modality. This was especially important in the early years of the

sixties when staffs were seeking some valid method of patient selec-

tion for the few machines that were available, but the interest in









prediction continues to the present in order to anticipate patients

who may need psychological intervention at some point. Some of the

work done in this general area has focused on the correlates of sur-

vival as a way of singling out factors that may be related to adjust-

ment, but with contradictory results (Cummings, 1970; Eisendrath,

1969; Farmer et al., 1979a; Foster et al., 1973; Glassman & Siegel,

1970). Other work, to be reviewed briefly below, has taken a prospec-

tive approach using some form of predialysis evaluation and then fol-

lowing the patients over varying periods of time and assessing their

adjustment.

De-Nour and Czaczkes (1976) used predialysis interviews with 136

patients and reinterviewed them at various points during the follow-

ing three years. They found that it was possible to predict, at a

highly significant statistical level, the three major aspects of ad-

justment: namely, compliance with the diet, vocational rehabilitation,

and psychological condition. They note that there was a slight tend-

ency to overestimate patients' adjustment potential, and suggest that

psychological intervention to help the staff develop a realistic atti-

tude and to help reduce physicians' denial can contribute to enabling

patients to fulfill their adjustment potential.

One of first studies of a prospective nature was that of Sand et

al. (1966) with a small homogenous group of patients who had no severe

psychopathology to begin with. They found the following characteris-

tics to be empirically related to adjustment: (1) somewhat higher

intelligence; (2) less defensive attitude about admitting to anxiety









or emotional difficulty, (3) relative prominence of depression over

somaticizing defenses during the pretreatment period, and (4) satis-

factory emotional support from members of the family. They also

found that past experiences with illness was important to adjustment.

Contrary to De-Nour and Czaczkes's (1976) finding, they found that

the largest number of errors in prediction arose from predicting

"adequate" adjustment for patients who actually came to show

"superior" adjustment; i.e., Sand et al. underestimated patients'

adjustment potential. In a relatively recent study of many of the

same factors as those explored by Sand et al., Greenberg, Weltz,

Spitz and Bizzozero (1975) could not find enough evidence to con-

firm that above average intelligence, willingness to discuss emo-

tional difficulty and anxiety openly, or relative prominence of

depression over somaticizing defenses in the pretreatment period,

could be used as valid criteria for predicting patient adjustment.

However, their sample was very small (n = 7). They did find that

stability, maturity, and a professed willingness to cooperate were

valid criteria.

The most ambitious and systematic prospective study of adjust-

ment has been undertaken by Malmquist and her colleagues in Sweden

(Malmquist, 1973a, 1973b; Malmquist, Kopfstein, Frank, Pickelsimer,

Clements, Ginn & Cromwell, 1972; Malmquist & Hagberg, 1974; Hagberg,

1974; Hagberg & Malmquist, 1974). In an initial study with a small

sample, Malmquist et al. (1972) found a perfect correlation between

good adjustment and closeness to mother as an adult. Other variables









significantly correlated with good adjustment were the lack of irrit-

ability and reported anxiety, adaptability to previous life changes,

and the lack of a focal dependence on one parent (versus both parents)

as a child. Those results are congruent with Viederman's (1974) find-

ing that patients make an adaptive, limited regression if they had a

gratifying infantile mutuality with their mothers (he does not mention

the relationship with the fathers) which engendered a deep sense of

confidence, basic trust and hope which persists in the face of great

frustration and danger. Similarly, Oberley and Oberley (1975) contend

that predialysis strengths and weaknesses and modes of coping are

highlighted by the dialysis experience and thus can be useful in pre-

dicting adjustment. This is what Malmquist found in her own studies

(1973a, 1973b). Interestingly, Malmquist et al. (1972) found that

poor adjustment was not a predictor of death, whereas Czaczkes and

De-Nour (1978) report that various aspects of adjustment--namely,

compliance and psychological condition--do affect survival.

In a prospective study that continued Malmquist's work by in-

vestigating the predictive value of intelligence, cognitive deficit

and ego defense structures, Hagberg (1974) found that although

higher general intelligence and fewer marked signs of organicity

prior to dialysis led to more rapid adjustment to the treatment

situation, these factors had no predictive value after 12 months of

dialysis. A habitual disposition to react with a flexibly repres-

sive defensive style seemed to promote early adaptation, while a

habitual disposition to basically use isolation had a negative

prognostic value over the long term course of treatment.









In summarizing the prospective work of Malmquist and her col-

leagues, Hagberg and Malmquist (1974) conclude that in addition to

the factors mentioned previously, the following are basic prognostic

indicators of rehabilitation: ability for positive identification;

regular social contacts; "adequate" reaction to kidney disease; and

expectation of fast rehabilitation.

Several prospective studies have sought to use the MMPI as a

predictive tool. Freeman, Sherrard, Calsyn and Paige (1980) found

profile differences between 107 dialysis patients who had a good,

fair or poor vocational rehabilitation. Marshall, Rice, O'Mera and

Shelp (1975) used the MMPI with patients in home dialysis training

to form a group of identifierss" who had their highest scale on one

of the first three, indicating an internalizing or somaticizing

psychological response, and "antagonizers" whose highest scale was

on 4, 6 or 9. The results indicated that antagonizers do better in

terms of completing training--which suggests that some manifestation

of anger is good--while the two groups did not differ significantly

in degree of overall inferred psychopathology. They also found that

age plus classification as identifier or antagonizer was a better

predictor of success in training than either variable alone. Ziarnik,

Freeman, Sherrard and Calsyn (1977) used the MMPI to compare mortality

rates. The group of patients who died within one year of initiating

dialysis were characterized by feelings of helplessness and high lev-

els of depression, anxiety and preoccupation with somatic difficulties.

Malmquist et al. (1972) found the psychasthenia scale (#7) to be sig-

nificantly correlated with adjustment.









Criteria for Assessing Adjustment

Having reviewed much of the work that has investigated patient,

nurse and family adjustment to dialysis, the question arises as to

the criteria for assessing adjustment. The criteria of Brown et al.

(1974) appear to be typical: "Within the limits of this study, the

ultimate definition of a patient's adjustment is based on our subjec-

tive judgement of how well the patient has found purpose and value in

his life on dialysis" (p. 168). Czaczkes and De-Nour (1978)

sound a similar note in their review of the literature on different

aspects of adjustment, finding some studies that use clinical impres-

sions and others that have varying criteria for the same aspect of

adjustment (for example, vocational rehabilitation). Some studies

have sought to use psychological tests to measure adjustment only to

find the profiles falling within normal ranges in direct contrast to

the clinical picture (for example, Glassman and Siegel, 1970; Strauch-

Rahauser, Schafheutle, Lipke and Strauch, 1977). However, Yanagida

and Streltzer (1979) have argued for caution in the use of standard

psychological tests. First, the tests have been standardized on other

populations and, therefore, their reliability for use with dialysis

patients is unsubstantiated. The condition of dialysis patients

fluctuates with their fluctuating organicity which makes interpre-

tation of results problematic. Second, dialysis patients are weary

of being "guinea pigs," particularly for psychological tests which

do not have face validity for them and which inquire into private

aspects of their lives. On the other hand, use of tests with face









validity run into problems due to the fact that dialysis patients

often exercise high levels of denial and social desirability.

Several investigators have focused on particular behaviors in

an effort to establish criteria of adjustment. Strauch-Rahauser

et al. (1977) constructed a 30-item scale for use by nurses to rate

patients' overt coping behavior in an effort to find signs of psycho-

logical disturbance that would not manifest itself on standard psycho-

logical tests. Three factors emerged in their study: passive, indif-

ferent behavior concerning treatment, self-destructive behavior

directed against treatment, and tense, anxious behavior. De-Nour et

al. (1972) had the members of three different medical teams complete

a 12-item questionnaire describing a "good" dialysis patient, i.e.,

a well-adjusted patient. Whereas they had expected a high level of

agreement that would reflect "text book knowledge" about the criteria

of good adjustment, they instead found that "intra-team agreement was

usually not very high," and "there were no items on which intra-team

agreement was high in all three teams." The impact of this lack of

agreement is summarized by saying, "In other words, if there is no

clear-cut agreement on a code of required and praised behavior, one

cannot expect high compliance from the patients" (p. 446). Such a

state of affairs clearly calls for a remedy in order to aid medical

teams in delivering quality patient care.

The evaluation of "good adjustment" is ultimately based on sub-

jective criteria. Who is really to say whether the dialysis patient

with near-perfect compliance to the treatment regimen is better









adjusted than the patient who considers life under such a rigid regi-

men to be unacceptable and who therefore chooses to abuse the diet

and shorten his/her life? When philosophical or theoretical arguments

cannot establish the objective criteria for good adjustment, then per-

haps a consensus approach will yield the most meaningful criteria.

This is especially the case when we are not trying to define what

good adjustment actually is as an a priori category, but are trying

to delineate criteria for care-giving personnel to use as they seek

to aid patients in making the best of a bad situation. Those items

that a substantial majority of dialysis-involved people consider im-

portant for good adjustment can be used as meaningful criteria. The

main use of the criteria is not so much to label a patient as well or

poorly adjusted, but to alert the medical staff to certain attitudes

and behaviors that most dialysis-involved people feel should be

closely monitored in order to provide the fullest range of quality

patient care.

Having concluded the review of the literature and set forth the

purpose and context of the present study, the next chapter will des-

cribe how the study was conducted. Further chapters will describe

the results and discuss their implications.














CHAPTER II

METHOD


Subjects

Subjects were 164 nurses and 79 patients from dialysis centers

that are part of Network Nineteen, a state-wide organization in Flor-

ida that serves as a central administrator for the various dialysis

units. There are no demographics on the subjects beyond their class-

ification as either a nurse or patient. Although there may be age,

sexual, class and ethnic differences among the subjects, such demo-

graphic differences were considered to be outside the focus of this

particular study, and will await further investigation.

There are undoubtedly selection biases in our sample since sub-

jects were volunteers, but it is difficult to know in many cases what

kind of biases were actually operating. However, a few observations

can be made about such possible biases. First, many of the dialysis

patients in units where the administrator had agreed to enlist their

support (see "Procedure" section below) were either poorly educated

or Spanish-speaking and could not read the questionnaire. Therefore,

only patients who could read English participated. Secondly, it is

impossible to say whether those patients who did participate were

compliant-types who may be expected to hold views similar to nurses

about adjustment to dialysis; or whether a substantial number were









angry, "rebellious" patients who enjoyed having an opportunity to

state their views on the subject. Third, the impact of unit differ-

ences is difficult to assess. Since the patient sample was drawn from

dialysis units where the head nurse or administrator was presumably

interested in good adjustment as indicated by their willingness to

participate in this study, it perhaps can be argued that these units

have an atmosphere or morale more conducive to good adjustment than

do units whose heads were not interested in participating in the

study. Such a morale difference would presumably influence subjects'

perception of adjustment. However, for the nurses it was hoped that

by having a sample drawn from a large number of units, unit differences

would be adequately controlled for among nurses. Fourth, it seems

likely that most of the nurses who did respond are still invested in

giving quality patient care, while probably few, if any, of the re-

spondents are suffering from professional "burn-out." It could be

argued that "burned-out" dialysis nurses would have presented a sub-

stantially different perception of patient adjustment. Finally, it is

not known what kind of pressure, if any, was actually put on subjects

in the different units to participate in the study. However, given

the number of potential nurses and patients in the various units, and

the limited number of actual respondents, it is assumed that little,

if any, pressure was employed in any of the units.

Procedure

The questionnaires (see Appendix A) were mailed to 16 dialysis

centers in Florida whose head nurses or administrators had agreed to









enlist the participation of their nurses and patients in the study.

It was requested that all nurses and all patients in the unit anony-

mously complete the questionnaires, which were then to be collected and

returned by mail. Nine out of the 16 units returned questionnaires

completed by at least some of their nurses and patients. Since the

heads of these 16 units had only a tenuous willingness to participate

in the research, and since we had no leverage with them but their good

will, we placed no demands on them as to when the questionnaires should

be distributed to the patients. It was felt that by demanding uniform

distribution timing by nurses who are already very busy, we would have

run the risk of losing even more potential data. Although it was re-

grettable not to be able to use such controls, it was felt that for

purposes of this initial study, it would be best to seek as large a

sample as we could reasonably obtain, and not risk the loss of poten-

tial data. Therefore, it is not known what percentage of patients

completed the questionnaires before, during, or after being dialyzed

on a given day. Questionnaires were mailed to an additional 42 units

along with a request that nursing personnel anonymously complete and

return them by mail. Sixteen of these 42 units returned completed

questionnaires.

Since questionnaires were sent to a potential sample of approxi-

mately 870 patients, our return-rate was therefore approximately 11%

for patients. Information on the size of the potential nurse sample

was not available, but a return-rate of approximately one-quarter to

one-third may be a fair estimate.









The Questionnaire

Tucker et al. (1981) have piloted a project in which they have

developed a 31-item questionnaire consisting primarily of behaviors

and attitudes that a sample of dialysis nurses have indicated are

relevant to the assessment of patient adjustment, and have asked mem-

bers of dialysis staffs to rate the importance of each item to patient

adjustment. The present study is essentially another step in the pro-

ject begun by Tucker's team, and consists of two parts: (1) a survey

using a revised questionnaire, (2) construction of a set of clinical

instruments based on the results of the survey.

It is assumed that both nurses and patients have a working con-

cept of good patient adjustment, whether their concept is clearly

delineated or subconscious and ill-defined. The questionnaire used

in the survey portion of this study (see Appendix A) consisted of two

parts. The first part of the questionnaire explored nurses' and pa-

tients' perceptions of good adjustment. This part was composed of

43 items describing attitudes, general behavioral patterns, and dir-

ectly observable discrete behaviors relevant to life as a dialysis

patient. These items were drawn from the initial polling of a sample

of nurses by Tucker's team and from previous research reported in the

literature. The items included the areas of diet and fluids, medica-

tion, hygiene, treatment procedures, interaction with staff, interac-

tion with family, and the patient's activities and view of self.

Subjects were asked to rate the importance of each item for good ad-

justment to dialysis on a 4-point scale according to the following

criteria:









4 = crucial; absolutely necessary for good patient adjustment.

3 = important but not crucial for good patient adjustment.

2 = somewhat important for good patient adjustment.

1 = irrelevant for good patient adjustment.

The criteria for assessing the level of agreement among subjects and

groups of subjects regarding the importance of the 43 items for good

adjustment were as follows:

> 90% = Consensus

75-89% = Substantial Agreement

60-74% = Tendency to Agree

<60% = Substantial Disagreement

These criteria are admittedly arbitrary. The rationale behind them is

the bias that agreement by a least three-quarters of a sample reflects

substantial agreement, while agreement by a little over half or less

of a sample reflects substantial disagreement.

Responses to this first part of the questionnaire were analyzed

for differences between (1) nurses and patients, (2) nurses with less

than one year of experience with dialysis, nurses with between one and

five years of experience, and nurses with more than five years of ex-

perience, (3) patients with less than one year, between one and five

years, and with more than five years of experience on dialysis. Al-

though this division of the experience dimension for nurses and patients

is also admittedly arbitrary, the primary purpose was to compare the

responses of "neophytes" (less than one year of experience) with the

responses of "survivors" (more than five years of experience).









Among other things, results from this part of the study are use-

ful in pointing out ways in which medical personnel's expectations of

patient behavior differ from those of the patients themselves. These

differences may pose areas of potential conflict between nurses and

patients. Secondly, the results are useful in pointing out areas that

medical personnel need to explore in order to come to a united under-

standing of the goals of patient care. Those items on which nurses

substantially disagree or only tend to agree regarding their import-

ance indicate areas in which personal opinions reign instead of solid

professional consensus. Thirdly, the results are useful in alerting

medical personnel to any issues that need to be addressed early as

they seek to orient neophyte nurses and patients to the realities of

making a good adjustment to dialysis.

The second part of the questionnaire briefly tapped subjects'

gicbal perception of chronic renal failure as an illness, and their

feeling about the patients' role in the treatment. The purpose was

to explore possible differences between nurses and patients in their

global perceptions of the illness and treatment, as well as how the

perceptions of patients interact with their ratings of the importance

of the 43 items in the first part of the questionnaire. The basic

idea of exploring global perceptions of the illness and treatment was

drawn from the work of Pritchard (1974a, b, c, 1977, 1979).


The Clinical Instruments to Be Constructed

The second part of this study took the results of the question-

naire-survey and used them to devise a preliminary set of clinical









instruments with which medical personnel can nonintrusively evaluate

patients' adjustment. Three different instruments in the form of

checklists were originally conceived: (1) the G-Scale ("G" for "glo-

bal") which was compiled from the responses of both nurses and pa-

tients, (2) the N (nurse)-Scale compiled from nurses' responses, and

(3) the P (patient)-scale compiled from the responses of patients.

The use of several instruments will point to potential areas of con-

flict.

The criteria used in constructing the clinical scales from the

results are somewhat stringent, namely, at least 75% agreement that

the particular item is either important or crucial for good patient

adjustment to life on dialysis. It was felt that a lesser degree of

agreement indicated a lack of clarity on the subjects' part about the

role of the particular item in the life of the dialysis patient.

Although the scales will yield an adjustment measure, their primary

purpose is to alert medical personnel to particular attitudes and

behavior that may require therapeutic intervention. A more detailed

description of the construction of these clinical instruments will

be set forth in the next chapters.














CHAPTER III

RESULTS


Analyses of Results from the Questionnaire-Survey

There were five sets of analyses from the results of the survey

using the questionnaire. Three of these sets contained analyses of

the results from the first part of the questionnaire in which sub-

jects rated the importance of 43 different items for good patient ad-

justment to dialysis. Another set contained analyses of the results

from the second part of the questionnaire in which subjects briefly

described their global perceptions of chronic renal failure and

treatment by dialysis. A final set of analyses was originally in-

tended to assess the relationship between patients' global percep-

tions of their illness and treatment, on the one hand, and their rat-

ings of the importance of the 43 items in the first part of the ques-

tionnaire, on the other. However, difficulties were encountered with

this final set of analyses as will be described below.


Comparison of Nurses and Patients

The first set of analyses compared the ratings by nurses with the

ratings by patients of the 43 items in the first part of the question-

naire. Table 3-1 presents the frequencies and percentages of responses

for each group for each of the 43 items along with the calculations of





69


TABLE 3-1

Frequencies and Percentages of Responses per
164) and Patients (P) (n = 79) (4 = Crucial,
what Important, 1 = Irrelevant)


Item for Nurses (N) (n =
3 = Important, 2 = Some-


S__p_____ Ratings_____ __


4
Freq.
%


Freq
%


2
Freq.
%


1
Freq.
%


# N P N P N P N P X


133
81.6

109
66.9

138
84.7

123
75.5

118
72.4

140
85.4

120
73.6

40
24.4

124
75.6

28
17. 1

28
17.5

42
25.6

44
27.5


65
83.3

46
59.7

58
75.3

56
72.7

60
77.9

67
84.8

64
81.0

58
74.4

68
86.1

52
66.7

31
41.9

46
59.0

42
55.3


10 22
6.1 28.9


28
17.2

52
31.9

23
14.1

39
23.9

39
23.9

24
14.6

42
25.8

92
56.1

38
23.2

105
64.0

85
53.1

97
59.1

81
50.6

60
36.8


8
10.3

21
27.3

12
15.6

14
18.2

12
15.6

10
12.7

12
15.2

14
17.9

9
11.4

21
26.9

28
37.8

22
28.2

23
30.3

15
19.7


2
1.2

2
1.2

2
1.2

1
0.6

6
3.7

0
0

1
0.6

27
16.5

1
0.6

26
15.9

34
21.3

23
14.0

24
15.0

36
22.1


3
3.8

6
7.8

5
6.5

5
6.5

3
3.9

1
1.3

1
1.3

4
5.1

1
1.3

1
1.3

5
6.8

6
7.7

4
5.3

12
15.8


0
0

0
0

0
0

0
0

0
0

0
0

0
0

5
3.0

1
0.6

5
3.0

13
8.1

2
1.2

11
6.9


2
2.6

4
5.2

2
2.6

2
2.6

2
2.6

1
1.3

2
2.5

2
2.6

1
1.3

4
5.1

10
13.5

4
5.1

7
9.2


57 27


35.0


35.5


7.64


16.01**


9.84*


12.30**


6.17


4.30


7.45


55.50***


5.12


63.98****


22.26***


31.50****


20.23***


25.99****








Table 3-1--Continued.

4 3 2 1
Freq. Freq. Freq. Freq.
% % % %
# N P N P N P N P X
15 10 32 59 22 62 10 28 12 49.20****
6.3 42.1 37.1 28.9 39.0 13.2 17.6 15.8

16 32 44 82 19 35 11 14 3 34.44*****
19.6 57.1 50.3 24.7 21.5 14.3 8.6 3.9

17 3 13 36 10 42 11 81 41 23.41****
1.9 17.3 22.2 13.3 25.9 14.7 50.0 54.7

18 14 32 60 18 54 5 33 20 48.67****
8.7 42.7 37.3 24.0 33.5 6.7 20.5 26.7

19 7 17 64 12 52 14 39 27 32.42****
4.3 24.3 39.5 17.1 32.1 20.0 24.1 38.6

20 40 52 87 19 29 3 7 3 42.56****
24.5 67.5 53.4 24.7 17.8 3.9 4.3 3.9

21 42 38 80 23 33 8 8 8 18.55***
25.8 49.4 49.1 29.9 20.2 10.4 4.9 10.4

22 76 59 70 15 16 3 1 1 19.01***
46.6 75.6 42.9 19.2 9.8 3.8 0.6 1.3

23 23 42 65 21 55 10 20 5 43.67****
14.1 53.8 39.9 26.9 33.7 12.8 12.3 6.4

24 29 38 75 15 49 13 10 3 37.91****
17.8 48.1 46.0 19.0 30.1 16.5 6.1 16.5

25 44 47 70 18 34 5 14 8 28.06****
27.2 60.3 43.2 23.1 21.0 6.4 8.6 10.3

26 11 35 62 14 45 13 43 16 50.06****
6.8 44.9 38.5 17.9 28.0 16.7 26.7 20.5

27 66 56 74 19 19 3 4 1 20.04***
40.5 70.9 45.4 24.1 11.7 3.8 2.5 1.3

28 45 36 69 21 38 5 9 14 25.85****
28.0 47.4 42.9 27.6 23.6 6.6 5.6 18.4

29 14 54 70 16 58 7 21 2 95.50****
8.6 68.4 42.9 20.3 35.6 8.9 12.9 2.5

30 43 38 77 16 38 9 6 12 31.43****
26.2 50.7 47.0 21.3 23.2 12.0 3.7 16.0








Table 3-1--Continued.


4 3 --2 1---
Freq. Freq. Freq. Freq.
% % % %__
# i N P N P N P N P X


39
23.8

39
23.8

64
39.3

21
12.9

116
71.2

72
43.9

11
6.7

65
39.6

44
27.0

97
59.1

45
27.4

2
1.2

30
18.4


44
57.9

45
60.0

54
70.1

30
38.5

69
88.5

44
58.7

36
48.0

52
68.4

41
53.2

54
70.1

41
54.7

22
28.6

42
55.3


92
56.1

91
55.5

77
47.2

87
53.4

40
24.5

77
47.0

83
50.6

81
49.4

94
57.7

56
34.1

84
51.2

58
35.6


23
30.3

20
26.7

15
19.5

23
29.5

6
7.7

13
17.3

21
28.0

19
25.0

22
28.6

16
20.8

17
22.7

10
13.0


28
17.1

28
17.1

19
11.7

37
22.7

5
3.1

13
7.9

54
32.9

17
10.4

19
11.7

11
6.7

33
20.1

56
34.4

35


7
9.2

7
9.3

6
7.8

14
17.9

2
2.6

9
12.0

8
10.7

0
0

6
7.8

3
3.9

5
6.7

11
14.3

10


*p < .05
**p < .01
***p < .001
****p < .0001

(Note: frequencies for each item may not total 164 for nurses and 79
for patients since some subjects did not respond to all 43 items.)


88 14
54.0 18.4


5
3.0

6
3.7

3
1.8

18
11.0

2
1.2

2
1.2

16
9.8

1
(0.6)

6
3.7

0
0

2
1.2

47
28.8


21.5 13.2


2
2.6

3
4.0

2
2.6

11
14.1

1
1.3

9
12.0

10
13.3

5
(6.6)

8
10.4

4
5.2

12
16.0

34
44.2


10 10
6.1 13.2


26.94****


30.53****


21.54***


23.88****


9.95*


28.22****


61.01****


31.52****


24.12****


13.38**


45.59****


59.71****


43.70****


---I--


---









chi-square for each item. The importance-ratings by nurses and pa-

tients were significantly different at the .05 level or less for 38

of the 43 items. Of particular interest in this table is the differ-

ence in the percentages of each group who saw an item as "crucial,

absolutely necessary for good adjustment." The following items (rep-

resented by short descriptive phrases and listed in descending order

of magnitude of difference) were seen as "crucial" by at least a

third more patients than nurses (i.e., there was a difference in

percentages of at least 33.3 between patients and nurses who gave

the item a rating of "4," with patients always having the greater

percentage):


exhibits friendly, pleasant personality

demonstrates good hygiene

arrives on time for all treatments

mature interpersonal behavior with staff

seldom depressed

questions medical charts and regimens

no frequent phone calls to unit

much participation in treatment

maintains same social life as before

mature interpersonal behavior with
family

needle sticks are insignificant

healthy independence from family

holds own needle sites

interested in gaining knowledge of
situation


N%

8.6

24.4

17.1

24.5

6.7

14.1

6.8

19.6

18.4


23.8

6.3

23.8

8.7


P%

68.4

74.4

66.7

67.5

48.0

53.8

44.9

57.1

55.3


60.0

42.1

57.9

42.7


Diff.

59.8

50.0

49.6

43.0

41.3

39.3

38.1

37.5

36.9


36.2

35.8

34.1

34.0


25.6 59.0 33.4


(29)

( 8)

(10)

(20)

(37)

(23)

(26)

(16)

(43)

(32)


(15)

(31)

(18)

(12)










TABLE 3-2


Categorization of Items According to Level of Importance
and Level of Agreement Within and Between Groups*

Consensus Substantial Agreement Tendency to Agree
(1) understands diet (2) complies with diet
(3) understands fluids
4 (6) takes medications
(9) present for all treat-
ments


n>
O 3
0


0
-5
O
C+
C 2






1



-- -*..--.--- ----r~- -- -----.,, ^- -.L^ -i.-^


*In making determinations for inclus r.









The following are additional items which were seen as "crucial" by at

least a quarter more patients than nurses (i.e., a difference in per-

centages of at least 25.0, with patients always having the greater

percentage):


(25) no inappropriate anger towards staff

(33) discusses dialysis problems with family

(27) cooperates with staff

(24) frequently interacts with other
patients at center

(22) discusses dialysis problems with staff

(38) strives to establish meaningful daily
routine

(13) no psychological difficulties with
machine

(42) seeks contact with other dialysis
patients outside the unit

(41) not dwell on illness and treatment

(39) involved in outside activities

(34) exercises regularly


N%

27.2

39.3

40.5


17.8

46.6


P%

60.3

70.1

70.9


48.1

75.6


Diff,

33.1

30.8

30.4


30.3

29.0


39.6 68.4 28,8


27.5 55.3 27.8


1.2

27.4

27.0

12.9


28.6

54,7

53.2

38.5


27.4

27.3

26.2

25.6


There were only four items (2, 3, 4, and 6) which a greater percent-

age of nurses than patients rated as "crucial," the greatest differ-

ences in percentages being 9.4.

Moving away from raw frequencies and percentages, the next table

(Table 3-2) is a first step in grouping items according to the level

of agreement both within and between groups, Levels of agreement are

defined as follows:









>90% = Consensus

75-89% = Substantial Agreement

60-74% = Tendency to Agree

<60% = Substantial Disagreement

An item must fall within the same level of agreement concerning its

level of importance for both groups in order to be included in Table

3-2. For example, if 78% of the nurses rated the item as a "4" while

82% of the patients did, that item would appear in the "Substantial

Agreement" column, row "4." However, if 78% of the nurses rated the

item as a "4" while 62% of the patients did, then that item would not

appear in the table because the percentages of both groups did not

fall within the same level of agreement. An item's appearance in the

table indicates that both groups have roughly the same amount of

agreement within themselves and between themselves about that item's

importance in good patient adjustment to dialysis. (Note: for all

tables and lists of items, only short descriptive phrases are used

for each item. See the questionnaire in Appendix A for a full des-

cription of each item.)

The importance of Table 3-2 is that for 38 of the 43 items, there

was either substantial disagreement within one or both groups regard-

ing the level of importance of an item, or both groups did not have the

same level of agreement regarding its importance. Although the defin-

itions of the levels of agreement are admittedly arbitrary, there were

only five other items that would have been included in the table if

the distribution of responses in either one or both groups had been

different by as much as five percentage points:









( 4) complies with fluid intake restrictions

( 5) does not abuse alcohol or drugs

( 7) complies with physician's orders

(35) accepts reality of kidney disease and dialysis

(40) perceives self as a total person

No other items came close to being included in the table, even if the

distribution of responses in one or both groups had been different by

as much as 13 percentage points. In sum, this means that for 33 our

of 43 items, nurses and patients disagreed to a noteworthy extent as

to just how important those items are for good patient adjustment to

dialysis.

However, when the clinical situation is the focus of considera-

tion, the data can yield a somewhat different picture. Even though

there may not be substantial agreement about whether a particular

item is crucial for good adjustment or whether it is simply important

for good adjustment, there may be substantial agreement that the item

is at least important for good adjustment and, therefore, deserves

close monitoring in the clinical situation. If for each group the

percentages of those subjects who rated the item as "crucial" and

those who rated it as "important" are summed, a picture emerges of

the level of agreement both within and between groups about whether

or not an item is perceived as being at least important for good ad-

justment. This picture is reflected in Table 3-3. As can be seen

from Table 3-3, nurses and patients at least tended to agree that 33

of the 43 items are at least important for good adjustment (i.e., at









least 60% of both groups perceived each of the 33 items as being at

least important). This leaves the following nine items about which

there was substantial disagreement either within or between groups

regarding their clinical importance:

(14) gives serious thought to kidney transplant

(15) reacts to needle sticks as insignificant

(18) holds own needle sites

(19) does most of self-care during treatment

(23) questions nursing charts and regimens

(26) does not make frequent calls to unit

(29) exhibits friendly, pleasant personality

(37) seldom depressed

(42) seeks contact with dialysis patients outside unit

There was one item (#17: "Patient expresses interest in home dialysis

training") regarding which nurses (75.9%) and patients (69.4%) at

least tended to agree that it is either irrelevant or only somewhat

important for good patient adjustment.

The information gleaned from Tables 3-2 and 3-3 provided the

basis for constructing a clinical instrument (the G-Scale) that re-

flects criteria for good adjustment on which both nurses and patients

can agree. The description of, and rationale for, the construction

of this instrument will be presented below under "Construction of

Clinical Instruments."








TABLE 3-3


Categorization of Items According to Level of Agreement Within and Between
Groups that an Item is at least Important for Good Adjustment*
Consensus Substantial Agreement Tendency to Agree


(1) understands diet
(3) understands fluids
(4) complies with fluid
restrictions
(5) not abuse alcohol
(6) takes medications
(7) follows doctor's orders
(9) present for all treat-
ments
(22) discusses dialysis
problems with staff
(35) accepts reality of
situation
(40) perceives self as
total person


Combine
Levels
3 & 4


(11) not overly anxious
about treatment
(16) participates much in
treatment
(24) frequently interacts
with patients while
at unit
(25) no inappropriate
anger at staff
(28) not try to manipulate
staff for more atten-
tion
(30) not exaggerate com-
plaints
(34) exercises regularly
(43) maintains same social
life as before dial-
ysis began


*In making determination for inclusion or exclusion, percentages were rounded to nearest interger.


(2) complies with diet
restrictions
(8) good hygiene
(10) on time for treatments
(12) interest in gaining
knowledge of illness
and treatment
(13) no psychological diffi-
culties with machine
(20) mature interpersonal
behavior with staff
(21) healthy independence
from staff
(27) cooperates with staff
(31) healthy independence
from family
(32) mature interpersonal
behavior with family
(33) discusses dialysis
problems with family
(36) continue with age ap-
propriate tasks
(38) establishes meaningful
daily routine
(39) involved in outside
activities
(41) not dwell on situation









Analysis of Nurses' Data

A second set of analyses took the data from nurses and analyzed

it in two different modes. First, nurses were taken as a whole group;

and secondly nurses were divided into three groups according to their

experience.


Nurses as a whole group

The pattern of agreement among nurses as a whole group regarding

specific aspects of good patient adjustment can be set forth in tables

analogous to Table 3-2 and 3-3 using the nurses' data found in Table

3-1. Table 3-4 groups items according to the level of agreement

among nurses concerning the importance of the items, while Table 3-5

groups items according to the level of agreement when percentages of

nurses who rated items as "crucial" or "important" are summed.

Criteria for levels of agreement are the same as defined above.

In addition to the items included in Table 3-4, there were two

other items concerning which nurses were within one percentage point

of meeting the criteria for "Tendency to Agree": namely, item #12

("Patient shows interest in gaining a good working knowledge of his/

her illness and treatment"), and item #40 ("Patient perceives self as

a total person"). A simple majority of nurses agreed on the level of

importance of 13 of the remaining items (8, 11, 13, 16, 17, 20, 31,

32, 34, 37, 39, 41, 43) while for 18 items there was substantial dis-

agreement as to just how important the items are for good patient

adjustment. As can be seen from Table 3-5, nurses at least tended to








TABLE 3-4

Categorization of Items According to Level of Importance and
Level of Agreement Among Nurses as a Whole Group*


Consensus Substantial Agreement Tendency to Agree
1) understands diet (2) complies with diet
3) understands fluids (5) not abuse alcohol
(4) complies with fluids (7) follows doctor's
(6) takes medications orders
(9) present for all treat-
ments
















ig determination for inclusion or exclusion, percentages were rounded to nearest interger.








TABLE 3-5


Categorization of Items According to Level of Agreement among
Nurses as a Whole Group that an Item is at least Important*
Consensus Substantial Agreement Tendency to Agree
Combine (1) understands diet (10) on time for treatments (11) not overly anxious
Levels (2) complies with diet (12) interest in gaining about treatment
3 & 4 (3) understands fluids knowledge of illness (16) participates much
(4) complies with fluids and treatment in treatment
(5) not abuse alcohol (13) no psychological dif- (24) frequently interacts
(6) takes medications ficulties with machine with patients while
(7) follows doctor's orders (20) mature interpersonal at unit
(8) good hygiene behavior with staff (25) no inappropriate
(9) present forall treatments (21) healthy independence anger at staff
(22) discuss dialysis from staff (28) not try to manipu-
problems with staff (27) cooperates with staff late staff for more
(35) accepts reality of (31) healthy independence attention
situation from family (30) not exaggerate com-
(36) continues with age- (32) mature interpersonal plaints
appropriate tasks behavior with family (34) exercises regularly
(40) perceives self as (33) discusses dialysis (43) maintains same so-
total person problems with family cial life as before
(38) establishes meaningful dialysis began
daily routine
(39) involved in outside
activities
(41) not dwell on situation
*In making determination for inclusion or exclusion, percentages were rounded to nearest interger.









agree that 33 of the 43 items are at least important for good adjust-

ment. There was substantial disagreement among nurses regarding the

clinical importance of the following nine items:

(14) gives serious thought to kidney transplant

(15) reacts to needle sticks as insignificant

(18) holds own needle sites

(19) does most of self-care during treatment

(23) questions nursing charts and regimens

(26) not make frequent calls to unit

(29) exhibits friendly, pleasant personality

(37) seldom depressed

(42) seeks contact with dialysis patients outside unit

(Note that these are the same nine items that were not included in

Table 3-3.) However, nurses substantially agreed (75.9%) that item

#17 ("Patient expresses interest in home dialysis training") is

either irrelevant or only somewhat important for good adjustment.

The information gleaned from Tables 3-4 and 3-5 provided the basis

for constructing the N-Scale (see below).


Nurses grouped by experience

Further analysis of the data from nurses investigated the rela-

tionship between nurses' amount of experience with dialysis and their

ratings of the importance of each of the items for good adjustment.

Nurses were placed in one of three groups according to amount of ex-

perience as a dialysis nurse: (1) "neophytes" with less than one year

of experience, (2) nurses with between one and five years, and (3)









"survivors" who have more than five years of experience. Frequencies

and percentages of responses according to amount of experience are

presented in Appendix B. From the chi-square calculations included

in Appendix B, it can be seen that groups of nurses differ to a sta-

tistically significant degree (p <.05) in their overall distribution

of responses on only one item, namely, item #2 ("Patient complies with

dietary restrictions"). However, in light of the many chi-squares

calculated for these groups it is possible that this particular dif-

ference is only an artifact. In addition, there were only two other

items whose chi-squares approached statistical significance (p < .10),

namely, item #5 ("Patient does not abuse alcohol or drugs") and item

#9 ("Patient is present for all treatments"). Even when only "neo-

phytes" and "survivors" are compared, there is only one item for

which the chi-square is statistically significant, namely item #5

("Patient does not abuse alcohol or drugs"). Furthermore, it is

interesting to note one of the basic ways in which the patterns of

responses differed for these three items (items #2, 5, 9): for all

three, a substantially larger percentage of neophytes than surviv-

ors saw the item as crucial for good adjustment (a difference of 19

percentage points for item #2, 28.3 for item #5, and 23.7 for item

#9),

The pattern of agreement among nurses grouped by experience can,

however, be set forth in a different manner in tables analogous to

Tables 3-2 and 3-3, using the nurses' data from Appendix B. Table 3-6

groups items according to the level of agreement among groups of








TABLE 3-6


Categorization of Items According to Level of Importance and
Level of Agreement Among Nurses Grouped According to Experience*
Consensus Substantial Agreement Tendency to Agree
(1) understands diet "(35) accepts reality of
(3) understands fluids situation
4 (6) takes medications



(10) on time for all
treatments
3





2





1


_*_ mllJn 4-Airm! -t-An Cir ;nr-in t nr v rmnf~nn e v.fpp vniiinprfo *n nfarvQoc in*ovnar


n mak ng eterm nat on o .









TABLE 3-7


Categorization of Items According to Level of Agreement Among
Nurses Grouped by Experience that an Item is at least Important*


Consensus


(1) understands diet
(2) complies with diet
(3) understands fluids
(4) complies with fluids
(5) not abuse alcohol
(6) takes medications
(7) follows doctor's orders
(9) present for all treat-
ments
(22) discusses dialysis
problems with staff
(35) accepts reality of
situation
(36) continues with age-
appropriate tasks
(40) perceives self as
a total person


Substantial Agreement


---- ---


Tendency to Agree


(11) not overly anxious
about treatment
(13) no psychological
difficulties with
machine
(24) frequently interacts
with patients while
at unit
(30) not exaggerate com-
plaints
(34) exercises regularly
(43) maintains same so-
cial life as before
dialysis began


*In making determination for inclusion or exclusion, percentages were rounded to nearest interger.


Combine
Levels
3 & 4


-- -- '-----"- I-


---


I I ----r---------


(8) good hygiene
(10) on time for treatments
(12) interest in gaining
knowledge of illness
and treatment
(16) participates much in
treatment
(20) mature interpersonal
behavior with staff
(21) healthy independence
from staff
(27) cooperates with staff
(31) healthy independence
from family
(32) mature interpersonal
behavior with family
(33) discusses dialysis prob-
lems with family
(38) establishes meaningful
daily routine
(39) involved in outside
activities
(41) not dwell on situation


. .









nurses concerning the importance of the items, while Table 3-7 groups

items according to level of agreement when percentages within each

group of nurses who rated items as "crucial" or "important" are summed.

The same criteria for levels of agreement used in preceding tables are

also employed here.

The importance of Table 3-6 is that when nurses were grouped ac-

cording to experience, there was either substantial disagreement within

one, two or three groups regarding the level of importance of 38 of

the 43 items; or all three groups did not have the same level of agree-

ment regarding their importance. Furthermore, there were only four

other items that would have been included in the table if the distri-

bution of responses in any of the groups had been different by as

much as five percentage points:

( 4) complies with fluid intake restrictions

( 7) complies with physician's orders

( 8) good hygiene practices

(12) interest in gaining knowledge of illness and treatment

In sum, this means that for 34 out of the 43 items, nurses grouped

according to experience disagreed to a noteworthy extent as to just

how important those items are for good patient adjustment to dial-

ysis.

Turning to Table 3-7, which is meant to better reflect the

clinical situation by grouping items according to whether or not

they are seen as being at least important for good adjustment, we

can see that nurses with different levels of experience at least









tended to agree that 31 out of the 43 items are at least important. As

would be expected, there was substantial disagreement among the three

nurse groups regarding the clinical importance of the same nine items

concerning which nurses taken as a whole group disagreed (see above).

Similarly, all three groups tended to agree item #17 ("Patient ex-

presses interest in home dialysis training") is either irrelevant or

only somewhat important for good adjustment. However, there were two

additional items about which nurses disagreed when grouped by amount

of experience:

(25) no inappropriate anger towards staff

(28) no manipulation of staff for additional attention

In both cases, the more-experienced nurses (i.e., the "survivors")

substantially agreed that these items are at least important for

good adjustment, whereas the "neophytes" did not even tend to agree

they are at least important. (i.e., 75% of the survivors saw item

#25 as at least important while only 58.6% of the neophytes did; and

for item #28, 84% of the survivors compared to 57.1% of neophytes saw

the item as at least important. In both cases, however, a difference

of less than three percentage points in the neophyte group would have

resulted in the items being included in Table 3-7.)


Analysis of Patients' Data

A third set of analyses took the data from patients and analyzed

it in two different modes. First, patients were taken as a whole

group; and, secondly, patients were divided into three groups accord-

ing to their experience.









Patients as a whole group

The pattern of agreement among patients as a whole group regard-

ing specific aspects of good adjustment is set forth in Tables 3-8 and

3-9 using the patients' data found in Table 3-1. Table 3-8 groups

items according to the level of agreement when percentages of patients

who rated items as "crucial" or "important" are summed. Criteria for

levels of agreements are defined as above.

In addition to the items included in Table 3-8, there were two

other items concerning which patients were within one percentage point

(including rounding) of meeting the criteria for "Tendency to Agree":

namely, item #12 ("Patient shows interest in gaining a good working

knowledge of his/her illness and treatment"), and item #36 ("Patient

continues with age-appropriate tasks, such as schooling, employment,

household care"). A simple majority of patients agreed on the level

of importance of nine of the reamining items (13, 16, 17, 23, 30, 31,

39, 41, 43), while for 12 items there was substantial disagreement

as to just how important the items are for good patient adjustment.

As can be seen from Table 3-9, patients at least tended to agree

that 39 of the 43 items are at least important for good adjustment.

There was substantial disagreement among patients regarding the clini-

cal importance of the following three items:

(14) gives serious thought to kidney transplant

(19) does most of self-care during treatment

(42) seeks contact with dialysis patients outside unit

Patients tended to agree (69.4%) that item #17 ("Patient expresses

interest in home dialysis training") is either irrelevant or only








TABLE 3-8


Categorization of Items According to Level of Importance and
Level of Agreement Among Patients as a Whole Group*
Consensus Substantial Agreement Tendency to Agree


(3)
(5)
(6)
(7)
(9)
(22)

(35)


understands diet
understands fluids
not abuse alcohol
takes medications
follows doctor's orders
present for all treatments
discusses dialysis prob-
lems with staff
accepts reality of situ-
ation


(2) complies with diet
(4) complies with fluids
(8) good hygiene
(10) on time for treat-
ments
(20) mature interpersonal
behavior with staff
(25) no inappropriate
anger at staff
(27) cooperates with
staff
(29) exhibits friendly,
pleasant personality
(32) mature interpersonal
behavior with family
(33) discusses dialysis
problems with family
(38) establishes meaning-
ful daily routine
(40) perceives self as
total person


3

2

1
*In making determination for inclusion or exclusion, percentages were rounded to nearest interger.







TABLE 3-9


Categorization of Items According to Level of Agreement Among
Patients as a Whole Group that an Item is at least Important*
Consensus Substantial Agreement Tendency to Agree


__________________ L.


Combine
Levels
3 & 4


*In making determination for inclusion


(1) understands diet
(2) complies with diet
(3) understands fluids
(4) complies with fluids
(5) not abuse alcohol
(6) takes medications
(7) follows doctor's orders
(8) good hygiene
(9) present for all treat-
ments
(10) on time for treatments
(20) mature interpersonal
behavior with staff
(22) discusses dialysis
problems with staff
(27) cooperates with staff
(33) discusses dialysis
problems with family
(35) accepts reality of
situation
(38) establishes meaning-
ful daily routine
(40) perceives self as a
total person


(15) reacts to needle
sticks as insig-
nificant
(18) holds own needle
sites
(24) frequently interacts
with patients while
at unit
(26) no frequent calls to
unit
(30) not exaggerate com-
plaints
(34) exercises regularly
(43) maintains same so-
cial life as before
dialysis began


or exclusion, percentages were rounded to nearest interger.


(11) not overly anxious
about treatment
(12) interest in gaining
knowledge of illness
and treatment
(13) no psychological diffi-
culties with machine
(16) participates much in
treatment
(21) healthy independence
from staff
(23) questions medical charts
and regimens
(25) no inappropriate anger
with staff
(28) not manipulate staff
for more attention
(29) friendly, pleasant
personality
(31) healthy independence
from family
(32) mature interpersonal
behavior with family
(36) continues age-approp-
riate tasks
(37) seldom depressed
(39) involved in outside
activities
(41) not dwell on situation









somewhat important for good adjustment. The information gleaned from

Tables 3-8 and 3-9 provided the basis for constructing the P-Scale

(see below).


Patients grouped by experience

Further analysis of the data from patients investigated the rela-

tionship between patients' amount of experience with dialysis and

their ratings of the importance of each of the items for good adjust-

ment. Patients were placed in one of three groups according to amount

of experience as a dialysis patient: (1) "neophytes" with less than

one year of experience, (2) patients with between one and five years,

and (3) "survivors" with more than five years of experience. Frequen-

cies and percentages of responses according to amount of experience

are presented in Appendix C. Since there were only 12 neophytes and

14 survivors, our results can only be suggestive. Furthermore, chi-

squares are not recorded since for all 43 items at least one-half of

the cells had expected frequencies of less than five.

Given such a small sample of neophytes and survivors, and the

fact that a difference in a very few subjects in either group could

have substantially altered the percentages, tables analogous to pre-

vious onesin which items were categorized according to level of agree-

ment among subjects concerning the items' level of importance will

not be constructed. Perhaps the most that can be gleaned from our

data regarding the difference between neophyte patients and those who

are survivors is to note those items which one group tended to rate




Full Text

PAGE 1

PATIENTS 1 AND NURSES 1 PERSPECTIVES O N GOOD ADJUSTMENT TO CHRONIC HEMODIALYSIS BY JAMES W. HUBER A DISSERTATION PRESENTED TO THE GRADUATE COUNCIL OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 1982

PAGE 2

Copyright 1982 by James ~J. Huber

PAGE 3

My m m pre feren ce \ 1ould be to posit the proble m in a philoso ph ic a l e x ist e ntial fr amework Karl Jasp e r has coin e d th e concept of "extreme situ a tion," which sho ws man :o at th e end of his teth e r but of f fro m the consol atio ns of all that seems solid and earthly in the daily round of life, a situation on the far side of what is nor ma l, routine, accepted, traditional, safe gu a rd e d He suggests that in such an e x tr eme situ ation, th e solidity of the so-called real world evaporat es and we are threatened by the void. --Carl H. Fellner Henceforth th e artificial kidney will present more and m ore patients with a makeshift life. But what monstrous machines, what expenditure of technologi cal skills, chemistry, and money is necessary to create a substitute, and moreover still an imperfect o ne for an organ that nature has mad e the size of a s ma ll clenched fist! Perm a nent t rea tm e nt with the a rtifi cial kidney must be counted a m ong the bizarre e x c esses of man in the stage of technocratic civil ization. Civilized m a n, surrounded by tubes, plas tics, glass, an d p umps drowns in a deluge of chemi cals, is conde mned t o slavish dependence on a mach in e The qu est ion is whether he will not after allin spite of all the science fiction propagandists of m e dicin e --one day reg a rd the eternal sleep of death a s ~ o re tolerable than this kind of artificial exist en ce --Pa w l o v-1 Bronsky, June 1969 W e are tra pped and no outsid er can open the trap for us. --Wif e of a dialysis p a ti ent

PAGE 4

Dedicated to those who must face life on dialysis and to those who help them bear the burden.

PAGE 5

ACKN Ol~LED GMEN TS I 1;;o u ld lik e to thank rny co mm itte e ch airperson, Dr. Harry G rater for h elping give shape to my sense of th e purpose and proces s of psychoth erapy His insights, attitudes and questions were both challeng ing and e x citing, and are still much appreciat ed I would also like to thank my other co m m ittee members, Ors. Alg i na, Nevill and Ziller for their support and sugg es tions, and especially Dr. C ar olyn Tucker, whose warmth, personal availability and willingness to gi ve were a constant source of encourag em ent throughout this st udy. To C her yl P hi llips I offer many, many th anks for her friend ship and her practical knowledge of the mechanics of winding one's way through th e graduate school experience. It is impossible to kno w the many ways in which my wife, Marior:, and d aug hter, J enn y, have helped me through this long process. Their lovin g p res ence has constantly given me a joyful re m inder of the most i mportant thin g s i n life. I am d eep ly g ra teful for their gift of th m selves to me A nd to my parents I give my heartfelt thanks for th<> fr continued in terest and support. Finally, to David Bernste in, 1 .-iho sh are d de ep ly in my lH e in gr2(L 1a tc school, go rn y sincere t hanks and 1;1arrn regards. It is a pleasure to anticipate the continu ed deepening of our frien dship in t he~ future V

PAGE 6

CHAPTER ONE H /CJ TABLE OF CONTENTS AC KNO ~L EDGMENTS ABSTRACT INTRODUCTION AND REVIrn OF THE LITERATURE Purpose of the Present Study ... The Stresses of Dialysis ..... Physical Effects of Hemodialysis The "Machine" and Medical Regimen Psychological Stresses Alterations in Life-Style Family Concerns ..... Interactions with Medical Staff. Is Life on Dialysis Worth it? Responses of Patients Meaning of the Illness Stages of Adaptation to Dialysis Life Satisfaction ... D e fense Mechanisms Psychiatric Complications Self-Concept Locus of Control ... Compliance ... Vocational Rehabilitation Home Dialysis ..... Responses of Medical Staff. Nurses' Response to Dialysis Treatment Medical Staff's Perception of Patient Adjustment ..... Staff-Patient Interaction Responses of Families Predicting Adjustment Criteria for Assessing Adjustment METHOD Subjects Procedure The Questionnaire The Clinical Instruments To Be Constructed vi PAGE V viii l l 3 4 5 7 10 11 12 15 16 17 18 20 22 24 28 30 33 34 36 41 41 44 47 49 53 58 61 61 62 64 66

PAGE 7

TH REE FO U R APPENDIX A APPENDIX B APPENDIX C APP!:.N:-H X D REFERENCES RE S UL TS 68 An a lys es of R es ults fr om th e Qu es tion na ir eSurv e y . . . . . . 68 Co mpa ri son of Nurs e s and Pati ents 6 8 An a l ys is of Nurses' D ata . . 79 Nurses a s a whole grou p . 79 Nurses grouped by experience 82 Analysis of Patients' Data 87 Patients as a whole group . 88 Pati en ts grouped by experience 91 Global Perceptions of Illn e ss and Treatm e nt by Nurses and Patients . . 92 Further Analysis of Patients' Data 94 Construction of Clinical Instruments 94 The G-Scale 95 The N-Scale 99 The P-Scale 101 DISCUSSION Comparison of Nurses and Patients Further Comments on Nurses' Responses Further Com m ents on Patients' Responses The Scales ......... Directions for Future Research 104 109 120 122 127 130 PATIENT ADJUSTMENT TO DIALYSIS SCALE (PADS). 133 FREQUENCIES AND PERCENTAGES OF NURSE RESPONSES PER ITEM BY EXPERIENCE . . . . . 136 FREQUENCIES AND PERCENTAGES OF PATIENT RESPONSES PER ITEM BY EXPERIENCE . . . 141 SUMMARY OF THE STATUS OF EACH ITEM 146 150 BIOG ~AP HICAL SKETCH 162 Vii

PAGE 8

Abstr a ct of Dis se rt a tion Present e d to th e Grad ua te Council of the University of Florida in Partial Fulfill men t of the R eq uire men ts for the Degree of Docto r of Philosophy PATIENTS' AND NURSES' PERSPECTIVES ON GOOD ADJUSTMENT TO CHRONIC HEMODIALYSIS by James W. Huber P ugust 1982 Ch a i r rna n: Harry Grater Major Department: Psychology The fo c u s of t h is study was patients' adjustment to chronic he m di a lysis. Althou gh many studies have noted the extreme difficulties that patients face in life on dialysis, there is little work that has even atte mp ted to define such adjustment in more th a n global terms. In an e f fort to help dialysis nurses fulfill their task of providing co m prehensive, quality patient care, the purpose of the present study 1:as essentially b m -fold. First, it wa s exploratory in that it us ed a qu e stionnaire-survey to uncover the working concepts of good adjust mer. t t o dialysis with w hich nurses and patients operate. By breaking d own t!1 e conc ep t of adjustment into 43 comp onent ite ms the study identifiecl ite i ns c onside r ed by one or both grou ps t o be important, ite ms co ns id e r ed to be uni mpor tant, and ite ms about whic h th ere was dis agree meGt co ncerning th eir i mp ortanc e f o r good adj ust m ent. The se c ond vii i

PAGE 9

pu r pose of the study v1as to pro vi d e nurse s with instruments vii th which th e y c an n on int r usively assess patients' adjustment to di a lysis. Usin g th e r esu1 ts fro m t he q ues ti onna i resurvey, a consensus-a p proach \ vas tak en to constr u c t instru men ts v1hich ar e b asi cally cod es of e xpe cted beh aviors which p at ient s and / o r nu r se s consid e red to b e impo r tant fo r goo d adjust m ent. The highlights of the results from the sample of 164 nurses and 79 p a t ients were as follows. First, the t wo groups differed to a sta tistically significant degree in their pattern of responses to 38 out of t he 43 i tems Patients were much more likely than nurses to rate ite m s as "crucial, absolutely necessary for good adjust me nt" to dial ysis. S e c o nd, although nurses could at least tend to agree on the relativ e i mpor tance of the distinctly medical items, there were large differenc es among them in their perceptions of the relative importance of the oth er items which covered other aspects of adjustm e nt. Third, in b eth groups, exp er ience with dialysis was associated with only a few differences in the perception of the criteria for good adjustment. Fou rth nurses and patients significantly differed in their global p er cept io ns of the personal meanings of the illness and treatment. Impiicati on s of the results for patient care and future dire c tions in r es e arch were d isc uss erl. i x

PAGE 10

CHAPTER I INTRODUCTION AND REVIE\-1 OF THE LITERATU RE Chronic i 11 ness has been with us from th e very dim past of the hu ma n species, and one of the ironies of medical progress is that the science that has sought to eliminate, cure or arrest chronic illness h as als o spawned a new set of proble ms as well. While medical science has, for e x ample, laudably provided a measure of relief from pain and a reta rdati on of th e deterioration associated with so me ch r onic ill nesses, it has also produced a situation in which many patients sur vive with i 11 nesses th at are chronically very grave. Conse quent ly, th ey are f or ced to live severely re stri cted lives that are altered to fit th e treatment regimen and the host of no n -hu m an devices upon which th eir prolonged lives are absolutely dependent. The tas k of coping with such a stressful situation and making a good adjustment to it pl a ces e xtreme de mands on patients, often calling fo r an inner strength a nrl n::source~ulness th a t is itself chronic a lly sapped by the illness. S uch an ill~ ess and such a treatment are c hroni c re na l failure and h ernoJ i a ly s is. furpo se of th e Present Study ThE fccu s of this investigation \' las patients I adjust ment to c h r on ic h e rn od i a lysi s and ho w s uch ad ju stment is vie wed by the patients the m sl ev :: s ai:d th e m -2d ical personn e l (pri mar il y dialysis nurses) \vho tr e at

PAGE 11

2 the n: t 1 1 0 to th ree ti mes a \ 'leek, fiv e t o ei g ;1 t huurs per t rea tm 2 nt. P>.s such this study did not includ e a medica l d esc ription or ex p lar. a tion of th e illn ess per se except as it i s relevant to th e liv ed experience and behavior of th e patient, nor did it in clude the problem of ad just ing to peritoneal dialysis (an alt ernc:t ive fo rm o f treat ment ) or kid ney tr ansp lant at ion. The goal was to establi sh criteria for a sse ssing patients' adjust me nt to chronic hemodialy s is, and to lay the gr ou ndwork for a set of clinical instruments that will help medical personnel in t he ass e ss men t of adjustm e nt by delineating specific behaviors and at titu des that are the important co mp onents of adjust ment. Res earch in this area is in an emb r yonic stage, with a pau c ity of studi es that even attempt to define such adjustment in more th an global tern 1 s. Even though we suspected that th ere would be so me differences in ho w dialysis nurses and patients perceive the illne ss and the tre at ment and adjustment to these realities, our fund of knowledge was too limited to make meaningful hypotheses as to how they might diff er. Again, even though we suspected that nurses 1 and patients' length of experience with h ~no dialysis would influence their perce pt ions of the situ.Jti on the available data were too limited to help us g enerat e mean ing ful h ypotheses as to how. Therefo re the first step was to broaden cur d a ta bas e of how nur se s and patients--experienced and in exper enced -p e r ce iv e the illness, the treatm ent and patients' adju stmC:'.nt to lif e on dialysis. Th~s study was essen tia lly a groundwork co mp onent in an on-going p r oj ect tha t is stLldying adjus t men t to dialysis. As su ch it co nsisted

PAGE 12

3 of an initial su rv e y and constru c tion of a s et of cli n ical i n s tr u me nts with w hich medic a l p er sonnel can n on intru s iv e ly asse ss indivi d u a l pa tie n ts ad jus bn en t Althou g h adju s t men t ma y b e in th e e y e of the b e h o l der a consen s us-approach to th e d e fining of a d ju s t me nt was used to es t a blish a nor m ag a inst which an individual pati e nt 1 s attitud e s and b eha viors can b e compared. Such an asses sme nt is very im p ort a nt in h e lping treatment team s devise a compr e h e nsive treat m ent plan for ea c h of th e ir pati e nts which can lit e rally m e an the difference between li f e and d ea th. Ho w ever, due to the difficulty and exp e nse of obtain in g and questionin g large samples of subjects in this area, further r e fi nem ent of such a set of clinical instru m ents--as well as experi m e n t a t ion with th em --will have to a w ait the next step in the on-goi n g p r oject. The Stresses of Dialysis Chronic he m odialysis has been a viable mode of treatment since 19 6 0 wh e n the artificial shunt made it possible for a hu m an b e in g to be repeatedly connected and disconnected from an artificial kidney. Si~ce t h en the population of dialysis patients in the U.S.A. as of 1 9 78 h a s gro w n to over 35,000 (Wein m an, 1978). Soon after ch r onic h e mo d ial ys is started to be a regular treat men t for chronic renal failur e it \'J a s ob v "ious th a t the tr e at me nt its e lf g e nerated an ex tr eme a n: oun t of str es s in m a ny different \' 1ays (Abra in 1 968 ; Cra111ond, Kn igh t & Law r ence 19 6 7; W r i gh t, Sand & Livingst on 1 966 ). In order t o un de r s tan d t h e ta sk f a c e d by a p a tient, th e fa m ily an d m e di c al

PAGE 13

4 staff in making a good adjustment to chronic hemodialysis, it is neces sary to sketch a picture of the stressors of the situation and the re action s to the stressors that have been clinically ohserved and docu mented. Abram (1972) noted that with any chronic illness the patient per ceives the illness as a threat to bodily integrity and functioning, and this, in turn, interferes with interpersonal relationships and the person's relation to the world. In general, the illness and its treat ment have ramifications for virtually all the major areas of personal functioning. Thus, in delineating the st r esses that result from treat ment by chronic hernodialysis most writers emphasize both the range and the magnitu d e of the difficulties that need to be faced (Abram, 1974; Goodey & Kelly, 1967; Levy, 1979; MacNamara, 1967; Menzies & Stewart, 1968; Rajapaksa, 1979; Salmons, 1980). A particularly eloquent although grim description of what the dialysis patient faces is re corded by Calland (1972) who is himself both a patient and a physician. Physical Effects of Hemodialysis Halper (1971) has noted the fragility of the dialysis patient's medical status, and it is this fr-agility which makes it virtually im possible for patients to predict when they will feel well or ill, and is G source of great frnstration when making plans. Th c :re are compli catio ns with shunts quite often, and the skin beco m es discolored after a while. Halper documents how dialysis creates whJt is basically a terrip o rary OBS characterized by decreases in memory and reality-testing. The EEG deteriorates, and the patient shows signs of the Disequilibriun1

PAGE 14

5 Sy~dr o m R: restlessness, he ada ch e naus ea and increased blood pressure. Call and (197 2 ), fu r thermore, reports h ow th e process of dialysis le ads to cereb ra l e de :n a f atigue dys pnea and mu sc l e v 1e akness D rmvs ine ss d i ziness and nausea ma y acco m pany th e rapid ch a nging of the electrolytic bal ance in th e patients' system. So me ti m es th ere is a sick feeling th at e m erg es a d a y before dialysis treat ment as the waste products b ui ld u p in th e patient's body, and the patient may experience a washed-out fee lin g for a day after dialysis while the body stabilizes. Menzies and Stewart (1968) report that all seven of their patients inte rm itte n tly sho wed a delirious or subdelirious reaction, s u ggesting th a t episodic o r g an ic cerebral dysfunction occurs during dialysis. However, De-Naur, Shaltiel and Czaczkes (1968) note that evidence fro m clinical manif e stations (such as rigidity an d inability to adapt to c hang ing situations), psychological tests and EEG suggests that many patients develop brain dysfunctions of a more chronic nature. The M achine" and Medical Regimen Chronic hemodialysis is a way of life that absolutely depends on the a rt ificial kidney machine. To stop dialysis treat ment s means death by ur e m ic poisoning within d ay s or week s as the wastes and taxi ns sl o vr ly build up within th e body. The "machin e, as it is called, is a life sust a in er or even life-giver that dem a nds tot a l obedien ce and the per s cr1 1s r r: l a tion s hip to it is often marked by extrem e ambivalence or o u t r ight hatred. Treat ment "on the machine" requires th e patient to be hook e d up two or three ti me s a week for fiv e to eight hours or more at a ti m~ The p a tient usually reclines in an easy-chair or hospit a l

PAGE 15

6 bed while the blood flows out of the shunt in the arm, through plastic tubes through which it is visible, to the m a chine which dialyzes it, and then back through plastic tubes to the shunt. Although the machin e requires monitoring, the patient is relatively passive through o u t th e dialysis. Viederman (1974), working from a psychoanalytic framework, sug gests that the machine and the restricted diet 11 inevitably 11 evoke conscious or unconscious fantasies of the treatment that relate to the e a rliest developmental stages, and have to do with the interaction bet1 een mother and child, and with total helpless dependency. The treat m ent itself, he claims, requires regression to this earliest st a ge. Lefebvre, Nobert and Crombez (1972), on the basis of psycho analytic i m pressions from following 35 patients for three years, found that patients' method of relating to the machine was to use the method of internalization known as incorporation (in contrast to introjection) with the result that the boundaries between the self and object beco m e blurred. Furthermore, patients do not incorporate the machine, but rathe r they feel incorporated by it. Abramson, Garg and Angell (1975) report how integral a part of the self-image the machine becomes for p at ie n ts. In a Draw-A-Person task patients with chronic renal failure d rew pictures that either included a shunt in the arm (or, occasionally, the le g ) or hid the arm in some fashion, such as with a sleeve of put tin g the arm behind the back.

PAGE 16

7 Wright et al. (19 66 ) note that after awhile on dialysis, hook-up to the m a chine co m es to hav e a low degree of associ a ted stress throu s h fumiliarity rather than through d enia l. Howev e r, th e y and other ers h ave noted th e continued anxiety about a cc i de nts and complic at io ns with the shunt (Freyberger, 1973; Halper, 1971). Fried ma n, Good w in and Chaud hr y (1970a) report that in their sample of 20 patients, the a verag~ nu mbe r of days spent being hospitalized per patient w a s 28 days per year, usually because of infections or difficulties with th e s hun t. Two very important aspects of the medical regi me n are diet re strictions and fluid restrictions. Calland (1972) complains bitterly of h ew the restrictions on sodium and potassium make food unpalatable, but even that restriction is not as bad as being held to 800 ml. total inta ke of fluids per d ay Czaczkes and De-Nour (1978) also note how stressful the fluid restriction is, as well as the fact that for u n knol-'m reasons patients are thirsty all the time, h'hich makes the re striction just that much more difficult. Psycholo gica l Stresses P erhap s the most important psychological stressor to be identi fi e d in th e early psychiatric studies of h emod ialysis is the conflict about d ependency (Abra m 1968; Cramond et al., 1967; De-N aur et al., 196 8; Frcyberger, 1973; Goodey & Kelly, 1967; Halper, 1971; Moore, 197L; Shea, Bogdan, Freeman & Schreiner, 1965; Short & l~ilson, 1969; ~Jri ght et a 1., 1966). The patient is depend en t upon the machine, the medical staff, and often th e society at larg e th at subsidizes the

PAGE 17

8 tr 2at r.1c nt. Most chronic he mo dialysis patients are adults in their prod Jc tiv e ye a rs 2nd the depend ency that tre a t me nt r equ ires co mes i nt0 conflict with t he desire to b e an in d e pendent, productive, care giving adult. As ~ot ed above, Vied erma n (1974) states that treatment requires regression precisely becduse of the need for dependency upon staff and machine. Although this regression sets up enormous conflicts in so m e pJtients, other patients enjoy the regression to such depend ency (Levy, 1976; Reichs ma n & Levy, 1972). Ho1t1ever, even in this lat ter case dependency is a central issue, for Reichsman and Levy (1972) suggest that such enjoyment of dependency is due to the fact that the dep endenc y needs of these patients were not sufficiently gratified when they had to function independently. For those patients whose de pendenc y needs had not been frustrated, the enforced dependency of he r:iodialysi s is a ve r y real th rea t (De-Naur et al., 1968; De-Naur & Czaczkes, 1976). Such dependency often leads to feelings of helplessness and rage {N 2de lson, 1971), and it is these feelings of rage that constitute anot her area of conflict and psychological stress. While the fact of inc;eased aggression is described by some writers (De-Nour et al., 19GB; Oe-Nour & Czaczkes, 1976; Reichsman & Levy, 1972; Wright et al., 1966), oth er writers note the difficulties and an x iety many patients have in expressing th~ir anger (Halp er 1971; MacNamara, 1967) because to e xp ress this an ger and rage is to risk rejection, withdrawal, and e ;en p:rnish rnen t by those upon \ho m they are so totally depend en t.

PAGE 18

9 Th ere are changes in body im age that con s titute another a rea of psychological stress. Altho ugh in the fir st d ecade of h emod ialy s is there were reports of r ather bi zarre feelin gs about a n d r e l ation s to, th e m a chine as part of th e patient's body (A b r am 1970; Coop er 1967; Sh ea et a l., 1 96 5), Czac zkes and D e -Nour (197 8 ) report that such ex tre me mac hinere lat ed body image distu r bances are rare and are no long er a central issue. Preoccupation and even sha m e of the shunt in t he arm are reported by som e (De-Naur et al., 1968; Lefebvre et al., 1 972 ) whi le concern with general appearance is reported by others (S hort & Wilson, 1969). Important as these concerns are, Czaczkes and De-Naur (1978) e mpha size that the m a jor issue of body image for dialy sis patien ts is the loss of urination. In an early report De-Naur (19 69 ) described th e psychological importance of urin a tion and the s tress as sociated w ith the loss of this function which led so me pat le nts t o h a ve "phantom urination." De-Nour attributes this to the mobilization of e x treme denial in the face of the stress over the 1oss of urination. Since that initial report other writers have confir med and further described the stress of the loss of this func tion (Basch, 1974; Pinney, 1976; Tourkow, 1974; Wijsenbeek & Munitz, 1970). Cz a cz ke s and De-Naur (1978) even go so far as to say that the d es ire to re gai n urina tion is an important mo tivation in patients seek in g to undergo transplantation. An other as pe ct of the alt e r a tion in body im age and functioni ng i s the usually drastic alt era tions in se x u a l relation s and self-p ercep ti on Due to d ec re as ed libido, fe ars about injuring the shunt site or

PAGE 19

10 acceptan ce by the partner, and fears re s ulting fro m lo v1er self-este em, patients report decreased frequ e ncy of intercourse and a high rate of total or partial im potenc e (Abr am, H ester Sheridan & Epstein, 1975; Foster, Cohn & McKegney, 1973; Levy, 1973; St ee le, Finkelst ei n & Finkels tein 1976). A fourth maj or area of psychological stress in chronic he mo dialy sis is the threat of death. Chronic renal failure is a terminal ill ness, but how long patients survive on hemodialysis is d e pendent on many factors, most important of which are compliance with the medical regi m en and the presence or absence of other medical problems. Although the threat of death can be a very significant stressor for some patients (Sa nd, Livingston & Wright, 1966; Wijsenbeek & Munitz, 1970), other s:res ses such as job changes and marital problems co me to have even greater significance (Wright et al., 1966) and lead to the demoraliz ing bind that Beard (1969) describes as "fear of death and fear of life". (p. 373) AJ_terat :i_ons in Life-Style A major source of stress involved in chronic hemodialysis is the ma n y losses and restrictions placed on the patient that necessitate major alterations in life-style. Wright et al. (1966) note that pa t i ents faced the actual or th reatened loss of membership in groups, the failure of plans or ventures, loss of ho mes possessions or finan cial st at us, loss of job or occupation, and oth er s m all d etai ls of a way of life. Calland (1972), writing from th e p at ient's point of view, d es crib es the restraints on travel i mposed by th e nece s sity of the

PAGE 20

11 twice or thrice i,.1eek ly dialysis; the f act th a t e mp loy ers are oft en un wil lin g to l end money f or a patient to buy e1uip me nt so t hat the patient c an b e f ree fro m the sch e dule of th e dia l ysis c en ter; ho w n e i ghbors co me to regard the patient as a marg inal person; and pro fe ss io na l and fin an cial set-backs du e to the f a ct that e m ployers are relu cta nt to pro mo te a ter m inally ill e mp loye e, and b a n k s ar e reluc t a nt to give mortgages. Jenkins (1979), als o writing from a patient's point of vie w states that in dealing with t he world dialysis patients t end to second-gu es s themselves and thus they h e sitate in their deci si on-maki ng, fearing how failure will affect their self-image and society's imag e of th em as "non-ill." Freyb erg er (1973) reports a generally di m inished interest in environ men tal activities as patients with dr aw t he ir ene r gy fro m such pursuits and in stead seek to strengthen the in ner fa mi ly relationships. _Fa mi ly Concerns The families, as part of the patient's pri ma ry social system, experience many problems to which each individual as well as the family as a whole m ust adjust. Short and Wilson (1969) describe ho w family members share the stresses and disappoint men ts of the patient, a nd h ow their liv es are often constricted by th e patient's condition b oth ch1onically as \ Je ll as by the d a y-to-d ay fluctuations. The sp ou s es must oft en switch roles around the ho me and also work situa tions, par ticularly if the patie n t's job h a s b een th e m a in source of inco ,1,e Oft ent im es, th e spouse may question t he validity of the d cisi 8n t o continu e dialysis, and such q uest ionin g produces t re m endous

PAGE 21

12 guilt in the spouse. There is a decreasing amount of physical close ness due to worries about the shunt site, and th e refore this need is chronically frustrated. Children often beco me more inde pe nd e nt and distant from the p a tient. And the patient knows that all these ef fects are primarily due to his/her illness and the method of treat ment. Interactions with Medical Staff Dialysis patients spend a significant amount of time every week with the medical staff, particularly the unit nurses, and thus the staff m em bers become very important persons in the patients' social worlds. Even so, many writers mentioned earlier (e.g., Nadelson, 1971) have observed the anger that patients may harbor towards the medical staff. Calland (1972) describes how many nephrologists invariably teli their patients they are doing fine after measuring their levels of electrolytes ~nd creatinine, and so the patients often stop tell ing the physician about how they are feeling. Nadelson (1971) sug gests that psychiatric consultation on a dialysis unit may be most helpful when the consultant attends to the psychological relationship at th e interface of staff and patient, and to the "emotional tone" of the staf f requesting the consult. He states that the patient's sick roie being resented and accepted simultaneously by the patient, l ea ds hi m /her to be very sensitive to interactions with the care ta kers The physicians' usual lack of awaren e ss of the importance of this in t eraction originates partly in th e "physical model 11 of

PAGE 22

13 trea t m ent, with th e physician as the active agent and the patient as th e pass iv e r ec i pient. As such, c ommun ic a tion of f ee li ngs is often b l o c ked i n patients Just as me dical staff become i mportant persons in the patients' social wor ld s, so th e patients beco me i mportant persons in th e social worlds of staff m embe rs, particul ar ly nurses. Aasterund (1 9 72), d es cribing hospital nurses in general, points out that ma ny hospital procedu res and nursing care practices are vie v ed as intrusive and vi c ti m izing to patients, and that nurses are often un awa re of their o wn anxiety about such practices since historically they have perceiv ed themselves as being supportive, caring and helpful to patients. As a result, nurses tend to establish a social defense system which incl udes the perfor ma nce of ritualistic tasks in order to avoid c hange thus restricting meaningful contact with patients. Althou gh s ome of the same dynamics may be active a mo ng dialysis nurses, their conte xt usually leads to a different kind of interaction with patients. After weighing-in patients and hooking them up to the machines, there are oft en sizable spans of time when nurses can stop and talk with the patie1 1ts Often th e patients are there several times a week for years, and the nurses can develop close relationships with the m. DeNaur and Czac1kes (1974a) report that observations and questionn a ires fro m ~urses reveJl they have extren1e devotion to patients, a very high rota tion i~ nu rsing staff, and high levels of ho st ility tow ar ds the patients, so met i me s o vert but more often handled by denial, overprotection, and projection. D e -N o ur and Czaczkes furth er ob se rve th a t the two mai n

PAGE 23

14 stres sors for dialysis nurses are the e xtraordinary responsibilities they h ave a:id the close contacts v1ith p at i ents on borro v1ed time. This means the_ythe nurses--live vrith th e con stan t threat of lo s s, and, consequently, this can lead to insecurity and a desire to withdraw fro m p atien ts. Against these feelings the nurses respond with a reac tion for ma tion of high devotion to the patients and high expectations for the patients' functioning. The frustration of these expectations by the situ at ion and the patients leads to feelings of aggression which in turn lead to a reaction formation with its consequent high levels of d evot ion and expectations, and so on. A vicious circle is generated. Short and Wilson (1969) suggest that during dialysis, patients regress and many of them make demands on the nurses until the nurses can no longer satisfy the patient, and consequently the nurses become frust rated. Short and Wilson emphasize that this is a crucial period, for if the nurses do not recognize the situation for what it is they wil'l either cater to every demand of the patient or ignore them. In either case, they wi 11 fee 1 both guilty and ang r y, and very possibly reject the patient Anot he r eleme n t that can generate extreme frustra tion for medical staff is the fact that their patients are never going to get v1ell. They have a chronic illness and will eventually deterior ate no matter what the staff d oes And it is precisely here that McKegney and Lange (1971) have observed a com mun ication gap between patients and med ical staff due to what the 1t1riters call a "dissonance of valu es ': the patients may prefer d eath but the staff is invested in maintaining life no matter that the quality of that life is.

PAGE 24

15 Is Life on Di a l ysis Worth it? Giv e n th e many s tressors with which p a tients h ave to d ea l, the fin a l stressor to b e me ntion ed is this qu es tio n th ey m u s t all face: Is lif e on ch r onic he mo dialysis worth it? Beard (1969) d es cribes how patients eventually have to face th e dile mm a of fearing that their lives vti 11 be cut short by an untimely death, and yet at the sa m e time fearing that even if they do continue to live the conditions for that continu a tion may not be acceptable. In fact, McKegney and Lange (1971) re p ort that many patients come to the point where life is unacceptable. Abra m M o ore and Westervelt (1971) grimly confirm this by reporting a rate of suicide that is more than 400 times the rate in the general pop u lation. In a so mew h a t philosophical essay on the nature of dialysis pa tiEnts1 approach to the meaning of life and death, Norton (1969) found a lack of abstract generalizations, or possibly a lack of awareness, of the issue of the meaning of their lives and deaths. Patients gave many conventional answers. But he reports that their attitudes toward death and dying pri m arily centered around the negation of life--such as being a bu r den on others, or not achieving what one had hoped formor e th an around the fear of death. In any case, life on chronic he m odialysis is a compro n1 ised life, and fe r some patients the compromise is un a cceptable, and th e refo re the prospect of voluntary termination of dialysis beco mes a realistic alt eniat-ive.

PAGE 25

16 Responses of Patients That is one was of responding to the stresses of dialysis. But for those who choo se to continue to live, the question beco m es one of how to adapt to the conditions of their lives. As a kind of benchmark ~gainst which one can judge the responses to be reported in the follow ing, Viederman (1978) offers the follmving definition: "By adaptation I mean to include not only successful compliance and participation in the treatment regimen without excessive constriction of the 'life space' but also the ability to continue treatment without marked inner suffering in the form of depression, anxiety, morbid worry, hypochon dric.sis, etc." (p. 445, footnote). Jenkins (1979) and Oberley and Oberley (1975), writing from the viewpoint of being dialysis patients, present an upbeat picture of life on dialysis and the very real poten tial for making a good adjustment to its rigors. Goodey and Kelly (1967), on the basis of single interviews with 20 patients, report that even though patients were very frank regarding the difficulties of life on dialysis, "nearly all said they had learned to accept their continuing treatment and seemed to be optimistic about becoming more adjusted to it as time went on" (p. 148). Other patients do not sh a re such an optimistic point of view and present a grim picture of what life is like on dialysis (Bronsky, 1972; Call and, 1972). Vieder man (1 978 ) reports a study that, utilizing a sentence completion test, found c1 marked diminution of active coping in hemodialysis patients as compared to other groups, and attributed this to the long-term effects of t he chronic stress.

PAGE 26

17 What follo ws i s a description of th e responses of patients t o chronic h e modia l ys i s broken d mvn into v a rious areas and t op ic s Th e purp o s e of t h i s revie w i s to highlight th e central question of this in vestigat io n : n a m e ly, in the light of th e realities of dialysis and th e range of r esponses ma d e to it, ho w is good adjust men t to dialysis to b e d e fined? Meaning of the Illness Although very little work in this area has been reported in the lit erature Pritch ar d (1979) stresses the i mpo rtance of the meaning of t he illn ess for the patient as being the intervening variable be tw een the givens of the situation--such as factors related to person ali ty and past e x perience, the nature of th e illness and the current s ituati on-and the cognitive, affective and b e havioral resp onse s the p at ient makes He has reported (1974a, 197 4b 197 4 c, 1977, 1979) his work in d e veloping the Response to Illness Questionnaire with which he is s eek ing to delineate the dimensions of meaning of illness in general. His initial work has been with dialysis patients and car di ac p a tients, and although his sa mp le of 60 is too s ma ll on which to run a valid f a ctor analy s is (Comrey, 197 8 ) his results are sug gestive, offer ing hypotheses for furthe r t est ing. The follo wi ng eight factors tended to emerge fro m his work: (1) hostility to ill n e s s a~ a d es t ruct i ve enemy, (2) distressi ng preoccupation, (3) help le s ~ n u 1invo lv e me nt, (4) positive appraisal and involv ement (5) sur ren de r (6) acceptance/rejec tion of illn 2ss (7) fight, and (8) h e lp le s s dependence. Wh"ile these f a ctor s are spuriously d er iv ed they do

PAGE 27

18 at le as t sug gest dimensions of meaning that can help care-giving per sonn e l und ers tand some of th e cognitive elem e nts th at may urderlie patient s' ad ap tati on beh ~ vior. Also su g ge stive is a semantic differ ential stu dy by Clark, H a ilstone and Slade (1979) in \'Jhich dialysis patients describe thei r illness "as very cru e l, bad, ugly and hard, also so me~1 hat boring, although only a little foolish" (p. 61). Stages of Adaptation to Dialysis Abram (1969) and Reichsman and Levy (1972) have outlined the various stages that patients go through as they start and continue with dialysis. Abram's schema has four phases with descriptive la bels: (1) The Uremic Syndrome, (2) The Shift to Physiological Equi libriu m (Dialysis)--"Return from the dead," (3) Convalescence-11 Re turn to the living'' (third week to third month), and (4) The Struggle for Normalcy--"The problem of living rather than dying" (third to twelfth month). Abram developed his schema at a time when dialysis machines and units were relatively scarce, and a patient was almost dead by the time of the first dialysis. Reichs man and Levy (1972) noted that depressive sy mp toms clearly preceded uremic symptoms by a period of weeks to three months in most pat ient s, usually because of meaningful losses and separatio ns that ~ere occurring. Before acceptance into the dialysis progra m patients felt so helpless and dependent that they could not risk being angry. Anxiety was rel a tively low co~pa re d to depression and was limited to two areas: the possibility of being reject ed fro m the program, and the future car e of their children. The first stage Reichs man and

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19 Levy d escr ibe as th e hon e y mo on p e riod, and be g ins about three w e e k s aft e r th e first di a ly s i s a nd continu es for si x w e eks to six m o nths. It is c ha r a ct er i ze d by m a r ked physi ca l a n d emo tion a l i mp ro veme nt which incr eJ s es th e pati e nt's confid e nce, hope and joie de vivre. Patien t s accept the intense dependency on the m a chine, the proc e dure and the staff. There a re periodic intense episod e s of anxiety about their he m odialysis, and a general apprehension about their life ex pectancy and ability to return to work. The second stage is described as the period of disenchantment and discourage m e n t. Its onset is often preceded by planning or actu a l resumption of an active and productive role at work or in the hous e hold. This depression leads to repeated physical complications wit l 1 th e shunt, especially clotting, and thus begins a pattern that is to occur repeat e dly throughout the patient's life on dialysis: there is a significant life stress which causes an affective change usually of a d e pressive or giving-up sort, and this in turn leads to complic a tions with the shunt site. This period lasts from three to t w elve m onths, and other characteristic affects and behaviors include f e elings of sadness and helplessness, guilt over dietary indiscretions, sha, r. e abo;.it th e illness and the complications and appearance of th e sh u nt site, and an increase in feelin g s of annoyance and anger, par t i cul a rly tow ar d s the staff. Th e t h ird st ag e is described as the period of long-ter m ad a pta tion in wh ich th er e is so me deg r ee of acc e pt a nce. The onset is gr ad u iJ l, a n d th e t e are flu c tuations in the sen s e of emotio na l and physical well-b e ing. Pati e nts use ma ssiv e d e nial, but a r e k e e nly

PAGE 29

20 aw a re of their abject d e p e ndency which in tu r n leads to much e x pres sion of ang e r. Mo s t of the anger is verb a li ze d, although so me is a c ted out by t a rdin e ss and open diet a ry in d i scr etion s Pa tie nts ar e strivin g not so much for greater indepen d ence but for more su pp ort, p a rticul a rly the males. If the staff incre a s e their suppo r t, the patients anger and aggression ~e decreased. The perceiv e d pressure to beco me productive conflicts with the wish to continue in the de pend e nt role. Patients feel that theiracce p tance by the staff ac tua lly depends on their becoming productive again. It sh o uld be noted that the sample on which Reichsman and Levy b a sed their sche ma was small (n = 25), and most of the males were de s crib e d as chronically and characterologically very passive and h ad high d epe n den cy needs. Their dialysis sa m ple was markedly ''field d ~ p en d en t" compa r e d to contra l groups. ~~heth e r these same character istics a r e nor ma tive for most dialysis patients appears doubtful since man y p a tient s seek to become productive and continue on w i th their liv e s. L i fe S a tisfaction In an intrigui n g study of the satisfaction with lif e a m ong dial y s is p a ti e nts and p J tients suffering fro m ost e o a rthritis, L a b o rde and P m1ers (19 80 ) us ed Cantril 's (1965) Self-anc h oring Life S a tisfaction S c ~ l c a s a measur e of general sense of w e ll-being. The s c a le is a l~ d der wi t h 10 run g s, with the to p rung b e in g the p a ti e nt's p e rception c, f the !! bes t pos s ible life ;' and th e b o t tom rung being th e p a tient's p ~rcf.pt i on of t he 1 \ 1 ors t po s sible l i f e ," P at ients wer e then asked to

PAGE 30

21 pla ce the mse lv es on the ladd er at the pres ent five years in th e pa s t and fiv e year s in the futu re. For the s amp l e of 20 dialysis patient s, who h a d b een on d ia ly s is an average of 3 1 6 months th e mean rating for t he ir p as t liv es was 6.2, for th e ir pre se nt liv es was 7.2, and for t heir future live s was 8.5. In oth e r words, this sa mp le of dial ysis p at ie n ts sees their lives as g e tting be t ter and better. However, these rath er surprising results are placed in conte x t by a similar s tud y by Isiadinso, Sullivan and Baxte r (1975) .,.,ith a sample of 84 p a tients. Their p atie nts scored significantly lo wer than controls on th e i r present life satisfaction and on the i r expectation of future satisf ac tion. Glassm a n a nd Siegel (1970) tested a small group (n = 7) of pa tie nt s blice \'Jith the CPI and the Ship m an An x iety and Depression Scal e. O n both t es tings, the CPI profiles approached the norm, with males even e xceed ing, and demonstrated consistency over time. On the Ship m an An x iety and Depression Scale patients had relatively lo1t1 scores, with no one being even one standard deviation from the mean. Both these tests seem to indicate that patients score normal on a sense of well-being, which is in direct contrast to the clinical picture of p e ople facing a great deal of disco m fort. The authors con c lud e t ha t the p a tients are using "m ass iv e denial" and th a t this may b e d an ge r ous since it could continue into a delusional process, whi ch ma y e x plain why som e p a tients who are doing we ll su dde nly go o n e at in g bin ges The authors furth er sug gest that th e test d a ta re flect t he patient s fanta s y of how th ey wou ld li k e to b e.

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22 Defens e Mechanisms Many have observed the presence of denial, even "massive de 11 j a l 11 i n the p s y ch o l o g i ca l fun c t i on i n g o f d i a l y s i s pa ti en ts (Ab r am 1975; D e -Nour et al., 1968; Freyberger, 1973; Menzies & Stewart, 1968; Short & vJilson, 1969; ~/right et al., 1966). Short and Wilson (1969) spe ak of the patients' "phenomenal" capacity to deny. But deny what? Although patients accept their condition and the inevitability of the outco m e, they deny that it is happening now. Even when bones are bowed from osteomalacia, they continue to hope and expect reversal. When clotting, bleeding or infection of the shunt site occur, it is treated as a singular event. Even with the many medical complications, the O B S that develops over the long haul and the decrease in intel lectual functioning, patients continue to deny that it is happening no w. Such d e nial can be costly. Menzies and Stewart (1968) found in their small sample that an unfavorable factor for the development of psychiatric complications was the excessive use of the mental mecha nisms of denial and dependency. Similarly, Heim, Moser and Adler (1978) conc luded in their study of Swiss country women \'Jith an iatrogenic terminal illness that although an habitual defensive re sponse to general life stressors could rely on repression, denial and reaction for ma tion, these modes are unsuccessful in coping with teminal illnes s "Aggravators" who exag gera te their morbidity and rely on the coping me chanisms of faith and stoicis m fare better than th e 11 m i:li mizers" v1 ho m ak e light of their morbidity and u s e repression a nd d en ial.

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23 Oth e r d efense mech a ni s m::i noted by so me vtri t e rs (Abram, 1972; DeNo ur e t al., 196 8 ; Fr e yb er ger, 197 3 ) ar e projection, intellectu a ization, isolatio n, di sp lace me nt, r eac tio n fo nna ti on and e ve n intro jection in wh ich the patient turns all his/her feelings upon th e self in a self-punitive fashion. Vied e r ma n (197 4 ), as not e d earlier, states th a t dialysis requires regression to the earliest stage of develop m ent. However, the quality of adaptation to dialysis, as measure d by neurotic or psychotic behavior or feelings of anxiety and depression, is 11 crucially affected 11 by the quality and degree of conflict which reemerges and the past solutions to such early conflicts. He suggests that adaptive regression--which is limited regr ess fo11--is possible if the patient had a 11 gratifying infantile mutuality'' v1ith the mother. De-Naur et al. (1968) observed that though t he use of these mech a nisms is adaptive, it leads to marked ego constriction. Similarly, Freyberger (1973) notes how the func tioning of these defense mechanisms is purchased by the loss of cer tain e mot ional capacities: (l) patients have a limited ability to show a ggres sive impulses, with consequent episodic or repeated de pressive states, (2) there is a decrease in the ability to p sy chic ally ad ap t to new situations, (3) there is a weakening of environ me n tal relationships in favor of strengthening the inner family relatio ns hips, and (4) there is a marked me nt a l preoccupation with vari ous c onse q u e nces of dialysis.

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24 Psychiatric Co mp licatfons Although there are numerous reports of th e incidence of psychi atric co m p'lications in dialysis patient s it is extre me ly difficult to obtain a clear and accurate picture of the actu a l rate and sever ity of such co mp lic a tions for the dialysis population as a whole. The di ff iculty a r ises from several conditions. First, the sample sizes have been extremely small, sometimes as small as 8 (Shea et al., 1965) or 9 (De-Nour et al., 1968). Secondly, there are differ en t mod es of gathering clinical information and rating the severity of sy m ptoms. Thirdly, data have been reported from different types of dialysis centers. Among the early reports, those units that treated individuals on a first come-first served basis (Gombos, Lee, Horton & Cu ~m ings, 1964; Retan & Lewis, 1966) or had a research fun ct ion (Shea et al., 1965) reported higher incidences of emotional disturb ar ce than those units that were treatment-oriented and e mp ha sized patient selection for long-term dialysis (Johnson, Wagoner, Hur,t, r-t.ue1ler & Hallenbeck, 1966; Sand et al., 1966). And, fourthly, there is the time factor. The treatment has changed somewhat over th e years, and Cz a cz k es and De-Nour (1978), in their review of the li te r ature in this are a come away with the impression that at least psy chosi s was more frequ en t in th e early days than at the present. To giv e ~ o ~ e id ea of the effect of th ese four factors on the re port e d rate of e mo tion a l n~ladjustment to dialysis, Armstrong (1978) fo u nd in revie viing 1 9 studies that the range of incidence of 11 poor e mo tion a l adj ust r.1 2nt 11 in adult dialysis p a tients is from 0 % in a

PAGE 34

25 co mplete ly screened samp l e (Abram, 196 9 ) to 88 % (Sh e a et al., 1965), w it h the m edian being 46 % Ev en when the sa m e investig a tor reports her findings from t\ 10 dHfer e nt groups fro m differe n t p e riods of in vestigation, the resu lts can differ widely. D e -N aur et al. (1968), aft er st u dy ing a g roup of 9 patients for one year, reported that the patients were quite content, that they continued to function in eve ry d a y 1 i fe more or 1 ess as before (co mpare this with Rei chsman and Levy's (1972) sample of chronically and characterologically very passive male patients who did not want to return to work), and were n ear ly free of psychiatric sympto m s, including anxiety. But th en twelve years later (De-Naur & Shanan, 1980), in comparing a gro up of dialysis patients with a group of kidney transplant patients, the inv es tigators found that only 35 % of the dialysis patients were free of psy c hiatric co mp lications. To briefly su mma rize the available evidence on the psychiatric complications of dialysis, Czaczkes and De-Naur (1978) suggest dividing the area into four major problems. First, psychosis. On the basis of the ir r e view of the literature, Glick, Goldfield and Kovnat (1973) suggested that the patho genesi s of th e v1hole spectrum of ps y c hotic disturbances, ranging fro m OBS through schizophrenic sy ndrn rn 2s usually v1ithout thought disorder to psychotic depression, w a s telated to the rapid metabolic chang es involv ed in dialy s is to geth c> r vri th envi ronrnenta l stresses. In Levy's ( 1976) review of th e l"it e r c t ture, he conclud e d that psycho sis is a relatively un common response, th a t i t is sometimes part of an org an ic reaction to medical

PAGE 35

26 and surgical complications, and for those vvho were psychotic before beginning a dialysis program their psychos es continued and worsened. Czaczkes and DeNa ur (1978) report th a t th e ir e xper ience has been th a t non-severe psychotic symptoms are quire frequent in the course of dialysis and that they are of a paranoid character and often com bined with depression. Such symptoms tended to increase mortality by nonco mp liance. Second is anxiety. Reports of anxiety also span the entire range of i'ate and severity, with Isiadinso et al. (1975) reporting prominent anxiety in all the patients studied, while Cazzullo, Invernizzi, Ventura and Sostero (1973) found frequent anxiety at the beginning of dialysis but that over time patients developed defenses against the anxiety. Psychological test measures of anxiety yield normal results (DeNau r et al., 1968; Fishman & Schneider, 1972; Glassman and Siegel, 1970), but clinical manifestations of anxiety while on dialysis in clude insomnia, difficulty in concentration, and excessive masturba tion in so me patients. The most important adverse consequence of anxiety \ ihile on dialysis is the shortening of dialysis hours; but we lack sufficient information at this time to knO\-J hov1 frequently this h a ppens. Third is depression. The reports on this particular psychological difficulty gen er ally agree that dep res sion is the most co mmo n p s ychi a t ric co m plication (Lefebvre et al., 1972), and that the majority of pa tients on dialysis suffer from it (Czaczkes & De-Nou r 1978). One e n ligh ten ing study, based on the reports f rom patients' families, who

PAGE 36

27 h a ve kn ow n the patients for ye ars prior to dialysis and see them when th eir s o cial facad e s are low ered indic ated th a t more than 90 % of th e p3ti en t s \-ve re dep r essed (Fri ec.lrna ii, Gno d 1 :i i n & Ch a udhry, 1 970b ). Fou r th is suicide. Ag a in, this is an area th a t presents different pictures d epending on wha t one inclu des un der suicid e In the clas sic stu dy of suicid a l b eh avior in chro n ic di a lysis patients, Abram et al. (1 971 ) r epo rted on the results fro m a sa m ple of 3,478 living and dead dialysis patients from 127 dialysis centers. They found that the w.a in mea ns of suicide consisted of e x sanguination, overdos age, and food-drink binges. However, when the authors included with d rawa l fr om the dialysis program and death through not follo w ing the tre at, 112 nt regimen along with the direct successful suicides, they fo u n d a suicide rate that was more than 400 ti me s th a t of the g e neral p o pul at ion, or, in oth er words, about 5 % of the dialysis population. If the a uthors did not include death throu gh not following the treat m~n t regi me n, the incidence of suicide \vas more than 100 times that of the g e neral population. They found a higher incidence a m ong cen ter p a tients than home dialysis patients and that a higher percentage of n1ale 5 th a n females atte mpte d and co mp leted su-icide. They suggest th at s o~e of the pre c ipitating factors of suicide were loss of family sup por t at an e m otional level, rejection or loss of an allograft, and fer m 0 n the threat of p assivity and in a ctivity. Siddiqui, Fitz, L a i. vt on a nd Kirkend d ll (1970), reportin g on one unit, found th a t 5 % of th e p a tients die d by s ui cide. Hov1ev er th eir sa le \ Ja s s ma ll. C adna paph ornch a i, Kuruvila, Holmes and Schri er (1974) found one cen t er whe re ov er a p eriod of five years, 40 ~ of th e d ea ths were fro m

PAGE 37

28 volunta r y termination of dialysis. However, Parsons (1978) found that less than 1 % of a sample of 400 dialysis patients fell into the cate gory of voluntary termination of dialys is. Czaczkes and De-Naur (1978) believe that self-inflicted damage by abuse of the diet and voluntary withdra1 al from treatment should not be included in suicide statistics since these behaviors have special features that underlie them. Their conclusion is that the frequency of attempted and successful suicide is probably "not very high" but that the frequency of suicidal idea tion is 11 very high,'' which indicates the quality of life of dialysis patients. By way of summary, Oberley and Oberley (1975) suggest that most of the psychological problems experienced in dialysis are related to patients' pre-dialysis modes of coping, and that the stresses engen dered by dialysis simply highlight the emotional/psychological strengths and weaknesses the patients bring to the situation. _?elf-ConceQl Several writers have emphasized the importance of the self-concept and level of self-esteem in coping and adaptation (for e x ample, Coelho, Hamburg & Adams, 1974), but there is little information available on ti1e self-concept o f dialysis patients. Clark et al. (1979) measured patients' self-cor 1ce pt using the se m antic differential techniques. O ut of 16 dimens i ons, dialysis patients significantly differed from a co ntro l group o n only one: dialysis patients sav, themselves as being 11 truer," The authors suggest that this result indicates that while,

PAGE 38

29 in general, dialysis patients do not se e th emse lves as much different froill "no rma ls," th e y do po ssib ly c o n s id er th emse lv es as h av i ng r ea ch ed a purer state of being or th at th e ir illn ess denies th em th e ch a nce to co nvey a false im age to the world. When th e y co mpare d the results of patients who had been on dialysis for seven to fourteen years with thos e of pati ents on dialysis for zero to four ye ars they found that the mea n self-rating (with little variation) of the long-term group v1as to v a rds the "strong" end of the weak-s t rong dimension, while the me a n self-rating for the short-term group v1a s tov1ards the "weak" end. Hm ,, ever, t hi s study was cross-sectional rath er than l ongitudi na l; cons equentl y, it may be the case that the strong ones survive, while the weak ones die early. Mlott (1976) e xam ined the fantasy life and self-estee m of dial ysi s p a tients and their spouses. Not surprisingly, he found that patients used fantasy more than their spouses did. The author sug gests th a t the high use of fantasy is associated with low self-esteem, and may be a substitute for real co mm unication since it is an easy way of overco m ing frustration. Patients frequently engaged in guilt fan tasies in wh ich they were punished either for past sins and present feel i ngs of anger to viar d the tre a tment team, or for envying others who were not equ a lly disabled. Female patients made greater use of fear of failure fant a sies than did male p a tients. This re s ult is the opposit e of Singer and Antrobus's (1972) finding th a t this content a rea i s m ore ty p ical of males' fantasies than females'. This result, c cm!)itied v,ith the fa c t that p ar ticularly the f ema le s in the s amp le

PAGE 39

30 riad lo 1tie r self-este em than did their spouses, leads Mlott to suggest that fe ma les' reactio n to renal failure is more adverse than that of males. Shanan et al. (1976), using a sentenc e completion test, found that dialysis patients show a diminution in self-estee m At the same time, they shmv an increase in narcissistic preoccupation as well as a marked decrease in active coping. Shanan et al. interpret the en tire pheno m enon as a shift from an internal to an external locus of control. Locus of Control In the initial study of locus of control in dialysis patients, Goldstein and Reznikoff (1971) noted that in Abram et al. 's (1971) study of suicidal behavior 117 of the 192 suicides were acco m plished by "food-drink binges." Instead of interpreting this binging as sui cidal, Goldstein and Reznikoff suggested that in an attempt to cope with the continuous responsibility and anxiety of keeping one's self alive by following a rigid treatment regimen, dialysis patients adopt an external locus of control which allows them to no longer perceive their behavior as life-sustaining, and thus a large, threat enlng area of responsibility is avoided. The investigators found that dialy sis p a tients had a significantly more e x ternal locus of control than did a control group of patients in the convalescent stage of a minor rnc dical condition. One of the dynamics operating in the condi tion o f dialysis patients is that they do not e x pect a return to

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31 health as treat me nt progresses, and so t he ir sense of mastery never retu rns The a ut hors furth er n o te that a lthou gh this sen se of an e xterna l locu s of co ntro l through which patients p er ce i ve th eir be havior as having little or no effect on th e ir condition can help th em avoid the constantly intruding re m ind ers of their tenu ous hold on life, it can also have disastrous conse quences whe n their coopera tion is essential for survival. If the patients perceive their be havior as unrelated to their condition, it increases th e likelihood th at they will reject their role in treatment. Hov ,e ver, an alterna tiv e hypothesis for binging is that it is rebellion against the rigid control that the dialysis treat me nt imposes upon them. That is, it ma y be an aggressive acting-out rather than a helpless act. We wi ll return to this idea in the next section on compliance. In a study that investigated the relationship b e tween locus of co n trol and adjust me nt to dialysis, Poll and De-Naur (1980) also found an overall mean locus of control score (10.95) which they interpreted as b ei ng indicative of an external locus of control. This is similar to results in oth er studies (Foster, Cohn & McKegney, 1973; Goldstein & Reznikoff, 1971; Kilpatrick, Miller & Willia ms 1972; Todd & K opel, 1977; ~-Jilson, Muzekari, Schneps & Wilson, 1974). They split th e ir sa mp l e at th e median to yield one group with internal locus of control (1 = 13 .65 ) and co mpare d th e two groups on th e following aspects of adju s t mo.nt : (1) co mp liance with food and di etary restrictions, (2) voca t io nal rehabilitation, with patients who were working at le ast half-ti me bein g r ated as wor k ing, while tho se r at ed as nonw ork ing

PAGE 41

32 were usu ally dJing nothing, and (3) acceptance of dis abi lity. The re sults indicat ed th a t lo cus of control was significantly correlated with all three aspect s of adjus t ment. Intern a l s w er e significantly mo re compli ant and acce pt ing of their disability than were e x ternals; and 75 % of th e int er nals co mpared to 35 % of the e xterna ls were working. Int erest in g ly, locus of control was not correlated with length of time on dialy s is, which suggests that, contrary to Goldstein and Rezni kof f's (1971) hypothesis, patients' sense of locus of control does not shift during the course of treatment. Poll and De-Naur spec u late that th e shift occurs predialysis, but that based on this stud y such a shift is not adaptive in terms of adjustment. Vieder ma n (1978) also, while acknowledging that locus of con trol is not an i rru 1table constellation of ch a racter traits, neverthe less suggests that it has a slow rate of change and is less likely to shift qualitatively in an entire group of patients subjected to the sa me experience, although he does not deny changes may occur to a greater degree in individual patients. In his experience, patients with a well-integrated internal locus of control find opportunities for effective adapt a tion to treatment: in e sse nce, the treatm e nt beco mes an extension of the mse lves and they experience the mse lves as the pri me movers rather than the controlled objects of an overwhelming life experie~ce which dominates the m. This is to be contrasted to patients who may superficially appear to util ize c on trol, but who actually use it as a rather fragile defense against helplessne ss or distrust. (p. 464)

PAGE 42

33 [Ho v1ev2r J ... the very p a ti ents \ .'ho rely com fort a bly on th e ir o w n activity for adaptation ar e most li ke l y to e xpe rie nce int ense cris es a t cert a in moments during t he t reat me nt befor e t he y c a n int egrate th e tr eatment p rocess a s p a rt of th em selves. ( p 465) He also not es t hat patients with an intern a l locus of control also experience less depression. _Compliance Diet ar y co m pliance involves adh e ring to the restrictions of the ki n d of food patients eat and the amount of liquid they are allowed to consu me In a sample of 31 patients followed for six months, Procci (197 8 ) found that only 39 % of the patients were good co m pliers while t he rest (61 % ) were poor compliers. Similarly, De-Nour and Czaczkes (1972) fou n d that 65 % of their sample of 43 patients were diet abusers, wit h 47 % be-ing rated as severe abusers. These rates of dietary abuse a r e not surprising in light of the fact that treatment programs fo 1 chronic, severe illnesses that require a substantial modification of pe rs onal habits and interfere with daily activities--as does the regi men involved in dialysis treatment--are regularly associated v;ith high levels of patients' nonco mp liance (Blackwell, 1973; Davis, 1968). Davis and Eichh o rn (1963) also report that in illnesses with multiple r eg i me ns, those regim e ns th a t involved the lea st a mo unt of change or dis c o1 n f o rt to th e patient had a high e r prob ab ility of being followed. P rocc i echo es the id ea s of oth i2 rs (Gol d stein & R ez nikoff, 1971; Foster e t al., 1973) th a t dietary abuse a m ong dialy s is patients may serve s o m e ad a ptive function; but he sugg es ts that it may b e a substitute

PAGE 43

34 form of gratification in individuals ~,ho have very little reinforce ment in their lives. Levy (1979) suggests th a t l a ck of coop e rative n e ss in general m a y be partially due to th e l a ck of respite from th e regimen. In studies that have looked for factors that correlate with dietary compliance and abuse, the results are so m etimes contradictory. D e -Naur and Czaczkes (1972), in a sample of 43 patients in which 65 % were abusers and 47 % were severe abusers, found that low frustration tolerance and primary gain from the illness v ere factors correlated with dietary abuse, while factors that were not correlated VJith abuse w e re denial of sick role, acting-out, suicidal intent, and family h om icidal wishes. However, in a later study (1976) of 136 patients over a three year period, they concluded that dietary abuse was caused by the denial of sick role, the acting-out of aggression, and the introjection of aggression via depression and suicidal tendencies, as well as by low frustration tolerance and gains from the sick role. They also found in this latter study that dietary compliance was pro moted by obsess i ve-cornpul s i ve traits, while Hi nokur, Czaczkes and De-Naur (1973) found that compliance was also related to the ability to continue working but unrelated to IQ. V o cati O!i a l Reh a bilit a tion Reha b ilitation has often been used as a criterion of adjustment fo r d i alysis patients, and many centers ma k e it their aim to get patients b a ck to wor k So m e writers (for e xamp le, Levy & Wynbrandt, 1975) h a v e used it as an inde x of the qual i ty of the patients' lives.

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35 The assu mp tion is that a good quality of life is associated with resu m ing the life a c tivities in which the patient was eng a ged b e fore begin ning di a lysis. One of the problems in co mpa ring studies is the differ ent sets of criteri a used for complete, partial and no reh a bilitation. In r e vie v 1ing 13 st u dies on the subject and trying to organize their results into co m parable categories, Czaczkes and De-Naur ( 1978) found that the level of vocational rehabilitation of center dialysis patients was 11 poor. 11 T \v elve of the 13 studies reported full vocational reha bilitation in between 29 % and 56 % of the patients. The question then beco ~ e s one of explaining such a poor outco m e in light of medical staffs' i m plicit or explicit push in that direction, and the fact that most patients are judged to be in sufficiently good physical shape to \'/Ork. T 1 ,vo reasons can be suggested. First, Fried m an et al. (1970a) calculated that 31 % of p a tients' 5-day work-week is spent by actual dialysis or activities necessitated by the treatment. Gainfully employed patients had to reduce their work hours to a mean of 29 hours per week. These results suggest that dialysis patients are literally too busy with their dialysis to be employed full-time. A second reason co m es fro m the work of De-Naur and Czaczkes (1974b). The_y found that thr e e out of seven physicians grossly overestimated th~ir patients' lev e l of vocational adjustment, which suggests that so m e ph y sici a ns a p pear to use denial in assessing their patients' conditio n a n d re h abilitation.

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36 The conditions that promote or impede vocation a l rehabilitation were also studied by 0e-Nour and Czaczkes (1976). They found that re j ec tion of nor ma l or high dep e nd e ncy needs, s a tisfaction with work, and a n active sic k role all promoted vocation a l reh a bilitation, while the o p posites of th e se three conditions imp e ded it. In su m mdrizing the varied reports on different aspects of voca tional rehabilitation, Czaczkes and De-Naur (1978) draw the following picture. The rehabilitation of home dialysis patients is greater than that of center dialysis patients (around 70 % and 40 % respective ly). Rehabilitation does not significantly improve with time, and the efficiency and satisfaction of p a tients with their work is often reduced. For some patients, rehabilitation is very important, while ot h ers enjoy not ~orking and even develo p psychiatric complications if pushed or "forced" to work. And, finally, social rehabilitation appears to be related to vocational rehabilitation. Home Dialysis Many studies have documented the superiority of patient adjust ment to home dialysis as compared to center dialysis (Blagg, 1972; Blagg, Hickman, Eschbach & Scribner, 1970; Gross, Keane & McDonald, 1973; Mal m quist & Hagberg, 1974; Moorehead, Baillod, Hopewell, Knight, Croc k ett, Fernan d o & V a rghese, 1970; R a e, Craig & Miles, 1972; Speidel, Koch, B a lc k & Kniess, 1979). This consistent superiority is at least i n p ar t due to the careful screening with which patients are selected f o r ho me dialysis tr a ining. Although in a sa m ple of 58 patients ent~rin g h om e di a lysis Lowry and Atcherson (1979) found 13 %

PAGE 46

37 who would be diagnosed as h a ving a d epress iv e disord e r according to th e criteri a of DS MI I I, Farm e r, Snm 1d e n and Pct rson s ( 197 9b ) fo t rnd n o m ore psychiatric morbid ity in th e ir s amp le of 32 h o me di a l ysis p a ti e nts than in patients attending a g enera l practicioner's su rgery. Frey b erger (1973) found that in com pa rison to center dialy si s patients, ho me dialysis patients had a striking quantitative reduction in psy chic troubles and a qualitative incre a se in their mastering of psychic troubles. They see the machine as a reliable object and this leads to a decrease in feelings of dependency and an increase in inner feelings of sovereignty. They have a strong moti va tfon towards being productive and e m ploying themselves intellectually during the dialysis procedure, and this results in a decrease in unpleasant tensions. Because they are not repeatedly interacting with oth e r patients they lack any kno i ledg e of the traumatizations of other patients, which also d e creases tension. Furthermore, because they are on their own schedules they can arrange them to their m v n liking so they can be more involved in environ m ental activities, and they can dialyze longer, which means they can be less strict about their diets. Home dialysis patients have a lower rate of accidents and co mp lications, and those emotional capacities which h a d decreased in center dialysis tend to increase on h o;r.e di~lysis. As alluded to above, one of the r eas ons home dialysis patients fa r e better on the average than center dialysis patients is the screen in g process patients must pass through b efore being trained fo r ho me di a ly s is. Shaldon (1968) has stated cate g orically that "h ome dialysis

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38 for chronic renal failure will only succ e ed if the p a tient can co me to d e pend on himself rather th a n on hospital staff or relativ e s". (p. 520) / \ lthough on the surf a ce it m a y appear th at ho me dialy s is would be th e tre a tment of choice for most patients since it encourages both active participation in me dical care and econo m ical delivery, the issu e is not so simple, and, as Rusk (1978) points out, there are m a ny psycho logical realities centering around the issues of dependence-independ ence, activity-passivity, control and mastery that need to be taken into account when evaluating prospective patients for home dialysis. First, a facade of independence--what Rusk calls pseudo-independencemay represent what is actually a hypervigilant, suspicious need for control that may bring the patient into conflict with the staff. Seco ndl y, chronic illness and treatment may be so stressful that pati ents may not he able to muster their adaptive resources. Third, oth e r patients v1ho are very capable of self-care may be so embittered by their il:ness that they feel entitled to be taken care of. Fourth, control and r.iastery are very important for patients' sense of well being, but the circumstances that provide this sense of control vary a m ong patients so that the more passive, dependent patients feel bet te r and m ore secure when others assume the responsibility for their carr.--and such patients are quite willing to delegate that role to a re spons iv e co mpe tent care-taker, wheth e r staff member or relativewhile t he mo re active, independent p a tients feel best when they play a lar ge role in their o w n care. A fifth issue is that if the home dialysis partne r is mo r e active and do mina nt than the patient, this

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39 m a y u nd e rm ine th e p a tient's co mm i t rn ent and r es p ons i bil ity for treat m e nt and le a d t o p o tential conflict. This l a st i ss u e hig h lights th e i mp o r t a n ce of th e p a tient-p a rtn e r relatio n ship for the success of ho me dialysis. Bailey, M o celin, H arr:pe rs and M e rrill (1972) have id e ntified fouibasic patterns of reaction amo n g ho m e dialysis pairs. (1) Sharing: the majority of ho me dialysis pairs share the good and the bad, are mutually sup portive and rarely allow psychological hindran c es to treatment. (2) Obs ess ive-c om pulsive: if one or both partners is extre m ely careful, th e patient and partner do extremely well on dialysis for years, and have the fewest co n ~lications and longest shunt survival. (3) Parent chiid: this relationships develops when there is pathologic dependency le ad ing to infantile regression. The dominant partner must be willing t o a c cept the role of parent. (4) Master-slave: Bailey et al. describe this as an exag g eration of a pre-existing do m estic relationship, with the spouse (usually the wife) being little more than a serv a nt. In such a situation the patient refuses to participate in training, ex pecting the partner to take care of it. As a result, the partner be c o me s progressively more depressed, nervous and forgetful, is unable to sleep, d e velops an agitated depression, and eventually drops out of training. Ho w ever, e v en with careful screening that attends to the basic psych o logic a l r e alities of ho m e dialysis, adjustment is not always go od Bro w n, Feins, Par k e and Paulus (1974) found four areas in which w e ll2 djusted ho me dialysis patients differed from poorly-adjusted

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40 patients. Well-adjusted patients minimized their losses and emphasized the capabilities th e y still retain e d. They tended to be achievem e nt oriented. By contrast, the less well-adjusted patients ~ -,e re m ore aviare of their reduced capacities because dialysis curtailed all the activi ties that were im po rtant to them. They tended to be centered on phys ; ca 1 acti vi ti es before dialysis became necessary. A second area involved financial resources. Well-adjusted patients had stable, secure, private resources while poorly-adjusted patients were barely supp or ted by public funds that often seemed at the whim of unknown bureaucrats. A third area involved the role and reiationship with the partners. Good partners generally made for a better-adjusted patient, although some patients with very helpful partners never seemed to rise above the proble m s of dialysis. And, finally, well-adjusted patients were able to develop a sense of independence from the machine so that they could center their lives on other concerns, while the less well adjusted p a tients continually felt tied to the machine and were pre occupied with their treatment. Not surprisingly, survival on home dialysis is related to many of the same factors involved with survival on center dialysis. After follo w ing a group of ho m e dialysis patients for 3.5 years, Farmer, B ew ick, Parsons and Snowden (1979a) found that the following were sig nif i cantly related to survival: low psychiatric morbidity, low physi c a l sy mp t oma tology, a history of good r e lation s hips v1it h both natural p3r ~ n ts in childhood, the presence of a coping spouse, and full-time e m ploy me nt or hous e work.

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41 As a conclu d ing note on ho me dialysis, a n a ti o n a l survey of pa ti e nt s and p a rtn e r s by Bryan and Ev a ns (19 8 0) fou nd th a t more than 5G % o f th e p, 1 1"tn ers h a d a ss isted p a ti e n t s fo r more t h a n t h re e y e a rs, \ v hi c h in d icate s th a t a stable r e latio ns hip is po s sible on ho m e dial ysi s Ev e n though m ac hine proble m s are a continuing major dislike a mon g p a rtners, 92 % expressed 1 i ttl e or no v1 o rry over th e m. Respon s es of Medical Staff Nu r ses' Response to Dialysis Treatment Dialysis nurses are a special breed of nurses. According to Mo or e (1972), who is a psychiatrist working with a dialysis-trans plant program, they feel very strongly about their role, that it is "b i g league nursing" on a par with PAs or ICU nursing. They see th e m selves as being more confident, brighter and more able to make independent decisions than regular medical/surgical nurses. Dial ysis nurses get closer to their patients, and feel that dialysis nursing is a particularly stressful specialty within nursing. They a r e the first on2s, usually, to be the recipient of the patients' psychopathology. They must tolerate extre m e dependency, so m e of which is laden Hith hostility, and be able to de-code the messages of p a tients in order, for example, to distin g uish hostile manipula tion fro m a genuin e need to be taken care of. Although the nurses int e lle c tually u n derstand th a t dialysis is an intervention in a ter" i.1 in a l situation, they invariably struggle v1h e n it becomes clear tLJ t t he p a tient has reach e d the end-point of tolerance and that disco 1 ti~u a tion of life w o uld be the most m erciful thing.

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42 U sua lly, dialy s is units seek to est ab lish a frien dl y, fa m ily at mosphere. Klenow (1979), u si ng Mauksch's (1973) sche ma of medical staff id eo logies, suggests that ther e are four factors th at help nu rses in d eve loping this c a ring atmosphere: th e physical layout of the unit often keeps people in contact; the natu re of the routine allo ws gener ous a mount s of time for interaction; the serious nature of the illness helps sustain personalized relationships; and the units recruit person n e l who fit the care ideology. However, even though the goal is care-giving within a friendly at mosphere, other dyna m ics are at work. Goldstein (1972) and Short and Wilson (1969) point out the frequent use of denial in the treatment staff's perception of their jobs and patients. In a seminal work by De-N aur and Czaczkes (1968), a picture is drawn of the unconscious e m otional reactions of medical teams, especially nurses, on dialysis units. Particularly in the early days of dialysis many patients were refused dialysis due to lack of available machinery. Such a situation engendered tremendous guilt in the staff, and led them to push patients to be "better" men and women--more successful, more diligent, more understanding--than they were befo re the illness in order to prove th e correctness of the staff's selection and thereby reduce the staff's feelings of guilt about the prospective patients they turned awey. A second emotional re a ction is often possessiveness. Nurses s ometimes react hostilely to the entran ce of a psychiatrist for fear t hat he/she will take part of the patient away fro m the m. There is a co~st a nt latent stru ggle b e tween nurses and technicians over who is m ore i mp ortant to t he patients, to viho m do patients confide more, and

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43 who do they obey. Nurses even seem e d jealous over the p a ti e nt's fr e d om or req ue st for m o re freedo m A third reaction w a s on e of overpro te c tive ne ss, where n u r s es to ok th e role of th e o ve r prot e ctiv e mo th er th e chief of th e unit w a s cast in the role of th e bad, d ema n d ing fath e r, and th e p a tients were the children. Such a set-up so m etimes led to open clashes. A fourth reaction observed was withdrawal, as ma nifested in the high turn-over rate of nurses and the im m e diate with dr awal fro m patients who were refused dialysis. D e -Nour and Czaczkes state that the major stressors for nurses a r e the insecurity due to more responsibility and independence, and t h e hostility and unconscious aggression that underlie the over-pro tectiv e ness. Although they are not certain of its sources, the aut hor s sugg e st it is in part due to the fact that patients take the h a rd work of the nurses for granted, and that it is difficult to form satisfactory warm relationships with patients. The authors feel that the team's aggression is still a major unsolved problem, although it must be pointed out th a t these observations were made in the early days of the managing of dialysis units. By ~,ay of sum m ary, it is perhaps clear now that although the ai m cf the nursing staff is to devote themselvEs to quality patient c a r e in a specialty th a t requires great nursing skill, the psychologi cal realities of the dialysis situ a tion may so me ti me s defe a t th e m in th i s purpose. It takes a psychologically sophistic a ted, m ature and g ivin g individu d l to survive being the provid e r of dialysis treat me nt and m a ke a good adju s t me nt to th a t role. Group meetings may be

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44 helpful. Eisendrath, Topor, Misfeldt and Jessiman (1970) report on the use of service meetings that include all the staff in an inter active group free from rigid hierarchy. The e mpha sis was on opening communication, and the results \'Jere an increase in staff morale and quality of patient care. 11 In fact, the only alternative to regular meetings are irregular blowups, 'air clearing' confrontations, and periodic turnover of the nursing staff 11 (p. 58). Medical Staff's Perception of Patient Adjustment Because medical staff play a leading role in the treatment regi men of dialysis patients, an issue of central importance to the qual Hy of patient care is the staff's perception of how \'1ell their patients are doing in adjusting to the rigors of dialysis since it is on the basis of this perception that staff members may vary their interaction with patients. In the light of the importance of this issue, it is disturbing to find 11 pronounced disagreement 11 between team-me m bers and patients in their perceptions of how well patients were doing with various aspects of dialysis treatment, but such is the report of De-Naur and Czaczkes (1971 ). These authors investigated one unit consisting of nine team members and eight patients. Although o n the one hand it is risky to generalize from such a small sample, on the other hand the small numbers would suggest that this was a unit in which staff members knew their patients particularly well because of a m ple opportunityfor interaction. The investigators distributed a 20 itcm questi o nnaire covering five main proble m areas of dialysis:

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45 diet (thr ee ite ms ), dialysis proc ed ure (three ite m s), phy s ical con d tion (t hree it ems ), e mo tio na l condition (fiv e it ems ), and restrictions and d ependenc y (fiv e ite ms ). Members rated each of the p a tients on each ite m and patients rated themselve s on e a ch item. The only aspect on which th er e was statistically significant agree men t between staff and patients was physical condition. On all other aspects th e re \ va s "pronounced di sagree rn ent. Furthermore, team members varied in their opinions as to the amount of suffering of individual patients, although they tended to agree on which patients were suffering more and which less. Nurses tended to evaluate patients as having much more suffering than did the physicians and particularly the psychi atrist'. The investigators suggest that this variability of team mem bers' perceptions of patients may underlie the wide discrepancies a m ong reports on patients' adjustment in the literature. In a later study, De-Nour, Czaczkes and Lilos (1972) found that although some teams do have agreement among themselves as to what aspects of dialysis treatment are important for good patient adjust ment, they do not agree on precisely what to expect of the well-ad justed patient. For example, team members may agree that it is i mpo rt an t for patients to work, but they may not agree on how much a patient should be expected to work. In such a case, the authors sugg es t that th e patients receive mixed signals fro m the staff, and this cont ri butes to noncompliance with the regimen. Furthermore, lack of te am egreemen t may lead to t e am dissatisfaction and the

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46 develop men t of a ne gat ive emotional atmosphere in the unit Similarly, in another study (1974a), De-Naur and Czac zkes fou nd th at nurses ov e estimated patients' compliance, and this led to the patients actually dcing worse. Also, when te ams had low e x pectatio ns regarding patients' employment, the patients functioned at a lo we:-le v el. In a furth er study of team bias in the assess men t of patients, the same authors (1974b) again found that there was good agree men t a mon g a sa mp le of nephrologists in describing the good (not ideal) di alysis patient. However, when it came to assessing their own patients, t he n eph rologists overestimated how well their patients were doing, anrl the authors suggest that the only e x planation for this is denial o n the part of the physicians due to the stressfulness of the situa ti on for th em. The physicians generally do not expect dialysis to be frighten i ng or s tres sful for their patients, and expect them to feel as physically fit as before and to describe their symptoms with neither exaggeration or dissimulation. The authors ask if these are realistic exp ec tations, because the sad fact is that high physician d en ial cor relates with poor patient adjustment. The authors further sugg es t that th e direction of causality is from physician to patient. Foste r and McKegney (1977-1978) portray a different aspect of t he imp a ct of medi cal team's perception of patients on patient adjust me n t. Th ey r epor t on a unit where the nurses unconsciously split pa t ients intc 11 good'' and 11 bad 11 patients and placed them into bm differ ent gro up s ostensibly on a random basis. Ho we ver, although the two gr o up s did not differ significantly in biolo gica l or demographic

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47 pa ra m eters at the ti me of th e ir entry into the progr am th e 11 bad 11 g r ou p h a d significantly mor e death s a hig her d e nsity of psychopath olo gy a nd in creasing ly rece iv e d poorer qu a lity c are f ro m th e nu r ses. A re c ent report by Tucker, Mulk er n e Panides and Ziller (1981) is congrue n t with the picture that is emerging of staff's perceptions cf patient adjust men t. They, too, found so m e agree m ent a mong nurses of wh a t a spe cts are i mp ortant for the patients' adjust men t to dial ysis. Further m ore, they found that patients who were pe r c eived as b e ing \'le 11-adj usted tended to be liked more by the nurses than were the patients who were perceived as less well-adjusted. The authors su ggest that nurses may give a differential quality of care to pa tie nts according to their perception of the patients' adjust men t and t heir consequent like or dislike of the patients; but such a hypothe sis needs further inve s tigation. Staf f -Patient Interaction All the studies reviewed in the last section suggest ways in which the staff's perception and expectations of p at ients' adjust men t affect the patients and the interaction between staff and patients. Furth er reports of how staff can and oft e n do interact with patients in a fashion that is unfavorable for patients' prog res s and rehabili tati on are found in Gl assma n and Sieg e l (1970), Halper (1971), M c.Keg n e y and Lange (1971), and Short and Wilson (1969). Th e situ ation i s not unique to di a lysis nursing. Aasterud (1972) observ e d anxiety in nurses in a g e neral ho sp ital setting that led to a V .lr i ety of ma lad apt-ive defen se s th at restricted meaningful contact

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48 with patients. Th e impact on patients is th a t they refrain fro m com munic a ting with th e nurse s about their fe a rs, thou gh ts and desires (J ohns o n 1979; S ki p pe r, 1965; Taglia c o zzo 1965). N a d e lson (1971) suggests that in a psychiatric consultation in a hospital setting the psychiatrist is most helpful w h en he/sh e attends to the psycho logical relationship at the interface of staff and patient, and to the "e m otional tone" of the staff requesting the consult. To focus on the patient would be to restore the agent-recipient, active-pas sive polarity between staff and patient which is part of the problem, and to miss the fact that the staff is actually trying to turn from their o w n un w anted affective involvement with the patient. The dialysis situation adds th e dimension of chronicity to staff-pati e nt interaction. As a result, patients do not have to m ake a te m porary adjust m ent to the various styles of interaction with st a ff; they have to make a permanent adjustment. Wertzel, Vollrath, Ritz and Ferner (1977) found that even though patients and nurses have a m utual desire for more co mm unication and trust, there is m a rked depression in both groups as well as aggression in the nurses, both of which are, in part, attributed to disturbances in th e interpersonal co mm unication bet w e e n p a tients and staff. Pa tient s f e e l do n rin a t e d by the nurses, and nurses fe e l little gratifi C ti tio n due to t h e lack of social resonance in the p a tients. Ar m s trong (1975) notes h o w nurs e s respond with ang e r and anxie t y over ti me to adolescent pati e nts who m a nif e st d e pendency, depres s ion, and an i nab ility to e m e r ge fro m thei r fa m ilies. Ale x and e r (1976) pr e s e nts

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49 a d eta iled analysis of h ow the dialysis situ a tion actu a lly puts p a tients in a doubl e -bind. On the one hand, th e staff's pri ma ry direc tiv es to patie nts are to "b e ind epe n dent ," "b e n or ma l" and "be grateful" while, on the other hand, the whole situ a tion of the ill ness and treat me nt direct the patient to be dependent, to realize that he/she is definitely not normal, and to face horrendous problems for w hich it is hard to be grateful. Responses of Families In a v2ty real sense, families undergo dialysis along with the p a tients since the lives of the family members and the family as a wh o le are often radically changed. Many of the restrictions placed on p a tie n ts are shared by their families, such as the restrictions on trav e l and physical activity, and the financial constriction that is often e x perienced. Family members and family constellations also undergo psychological change. Speidel et al. (1979) found that not only patients but also their partners described themselves as more attractive, more respected, more capable of pushing through their viewpoint, and more interested in their appearance--before beginning dialysis. Both patients and their partners currently felt more so cially inco m petent; and patients saw their partners in a more favor able lig ht (more attractiv e and socially reson a nt) than partners saw th em se lve s Sha m bau g h, Hampers, Bailey, Snyd e r and Merrill (1967), in a fo und2ti onal study of e m otional disturb an ces in spouses of ho me dialysis p atie nts, found sp ouses stressed by multiple losses and frustrations, pa rt icularly the patient's psychological regr es sion and possible death,

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50 to wh i ch th e y responde d \v ith fe e lings of d e priv a tion and hostility. While o pera ting t h e mac hin e s spou ses not only h a d to cope with pa tient s u n u s u a l d e pe n de n c y, but also w ith th e i r o w n mu r d e r ou s fanta sies. So me spouse s m anifest e d regressive re ac tions in the form of serious d ep ression, excessive closeness, de n i a l and avoid a n c e. lhe authors also report much displace me nt of an g er unconsciously directed at patients. Sev e ral writers have reported evidence that unresolved fa m ily t en sions and difficulties m a y not only exacerbate an illness but also u n de rm in e patient co m pliance with the treatment regimen (Chen & C o b b 1960; M a bry, 1964; Minuchin, Baker & Ros m an, 1975), while ot h er stu di es e m p ha size the circular process between fa m ily patterns and physic a l illne s s (Grolnick, 1972; Leigh & Reiser, 1977). A re cent s t u d y by Steidl, Finkelstein, Wexler, Feigenbaum, Kitsen, Kli g e r an d Quinlan (19 8 0) provided evidence for the fact that m a ture, open, p os itive interactions and structure in the families of dial ysis pati e nts are correlated with adherence to the treat m ent regi m en and a relatively positive medical assessm e nt. Pentecost (1970) and P e ntecost, Zwerens and M a nuel (1976) investigated intra-family com munication, and focused on the explicitne s s of each fa m ily m e mber 1 s v e rbal st a te m e n ts and the m a nner of ta k ing r e sponsibility for on e 1 s o w n st at e me n t s. H e f o und in a sa m ple of 40 adult ho m e dialysis pa tie n t s t ha t fa m ily attitud es sp e cific a lly th e ability to e x press o ne 1 s p e rso n al identity and to hav e it accept e d by the rest of the fa m il y w os as so ci a t e d \vith adjust me nt to di a lysis.

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51 Hm 1ever, m a ny families do not react in a mature manner Mass and D e -No ur (1 9 7 :i ) found th at in th e sev en f am ili es of t heir s amp le 1>1ho al!o wc d th e m se lv es t o b e int erviewed, t h ere was a striking l ack of e mpa thy a s we ll a s ho s tility be tween the pare nt s, while th e y man fest ed a gre a t de a l o f ho st ility agai ns t the hu man e n viron me ntmedi c a l staff, frie nd s, extended fa mi ly--and su ppressed the expression of e ~ patl1y in t he children. The inve s tig ators' major i m pression from th ese seven fa m ilies was that they had given up. As one wife put it, 1 1 He are tra ppe d and no outsider can open the t r ap for us" (p. 24). r~ aur in and Schenkel (1976) also found that th e majority of the famil ies i n their sa mp le manifested prim a ry levels of very positive affect tow a r ds ea ch other with a minimal expression of a mb ivalence. In fact, th e s p ouses w ere ove r -involv ed with each other and fa m ilie s were very fa m il y -ce n t e red. The authors suggest there may be un expres sed anger, f rustra tion and guilt, which in turn leads to more involvement. When f ~mil ies were as ked about the responsiveness of patients to receiving co mm unication about the needs of others, only four out of 20 patients !/Jere se en by their fa m ilies as being a p propriately responsive. Al th ough pat i en ts expressed great concern fo r the n eeds of nonafflicted family mem bers, there was only mini ma l d emon stration of it. Pati e nts manif e~ t ed a great deal o f control ov e r th eir fa m ili es Some work h as been don e in th e area of ass ess in g the marr i age rela tionships of dialysis patients, with most of th e effort b eing focused on the s ex u a l r e l a tion sh ip (A bram et al., 1975; Levy, 1973, 19 74 ; S te ele et al., 1976). But information on oth e r aspects of th e

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52 relationship appears to be sparse. Finkelstein, Finkelstein and Steele (1976) used a marital questionnaire on 17 stable dialysis patients and their spouses. They found nine of th e 17 couples reported multiple areas of serious marital conflict comparable to that found in patients seeking marital counseling, and the autho r s interpreted this as severe marita1 discord. Yet when the patients were asked for a global assess ment of their marriages, 88 % of the couples rated their marital prob lems as of minor importance and their marriages as basically satisfac tory. In another report, this same group of researchers (Steele et al., 1976) found no correlation between marital discord and the patient's d e pression or problems with intercourse. In a study of satisfaction with family life, Friedman et al. (1970b) found that only five of 13 spouses felt family life had been worttn'1h"ile since dialysis began, but the majority felt that the rela tionship with the patient was closer and better than before. Holcomb and MacDonald (1973) found that 87 % of the spouses in their sample said they enjoyed family life, even though many of them showed many psychopathological reactions. Czaczkes and De-Naur (1978) explain such a~parently contradictory findings as being the result of the use of denial and reaction formation while the spouses' basic attitude to w a r ds the patient is extremely negative and hostile. Furthermore, Short and Wilson (1969) contend that a family that continually denies th e i m pact of its dialysis problem s cannot function effectively. Steele et al. (1976) explain the apparent contradictions by suggest ing that for dialysis families, the dialysis proble m s eclipse the

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53 ot her fami ly probl ems th at nor ma lly would hav e l ed to th e seeking of profession a l help or s epar ation. Th ere is littl e infor m a tion on the rea c tio ns of the children of di a lysis p at ients, and wha t is available is c ontradi cto ry For exam ple, wheieas Fried ma n et al. (1970b) fo und th a t th e re 1-, as n o great fo 1pa ct on children, Tsaltas (1976) repo rte d th at all 15 of the children of ho me dialysis patients in her sam p le sho we d depressive and hyp o ch ondr iacal MMPI profiles and sev er e disturb an ce s in their human fi gure drawings. Mass and De-Naur (1975) found that children of cen te r dialysis patients were often asham e d of their parent's illness. In closing this section, it should be noted that interventions are often made for distressed spouses, couple s and fami1ies. A rath e r poignant finding in this reg ar d is re po rt ed by Sh am b a ugh and Kan ter (19 69). They describe group meetings with so m e spouses of dial ysis p a tients. The groJp progressed from an initial state of panic a nd d en ial to one of more openness and interaction among the members. Ho we ver, they progressively increased their sense of e mo tional sep arateness from their partners as they lessened their reliance on denial. Predicting Adjust ment Predicting p r ospective patients' adjust me nt t o dialysis h a s been a goa l of me dic a l staffs ever since the in cep tion o f this t r eatmen t moda lity. This was especially imp or tant in th e early years of the s i xties when staffs were seeking so me valid me thod of patient s e lec ti on for the f ew m a chines that were avai lab l e but th e int eres t in

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54 pr ed i ction continu es to the present in order to anticipate patients who may n eed psychologic a l intervention at so me point. So me of the work do ne in this gener a l area h as focu sed on the co rre lates of sur vi v al as a way of singling out factors th at may b e related to adjust me n t, but with contradictory results (Cummings, 1970; Ei sendrath, 1969; Farmer et al., 1979a; Foster et al., 1973; Glassm an & Siegel, 1970). Other work, to be reviewed briefly below, has taken a prospec tive approach using so me form of predialysis evaluation and then fol lm ,Ji ng the patients over varying periods of time and assessing their adjust m ent. De-Naur and Czaczkes (1976) used predialysis interviews with 136 patients and reinterviewed them at various points during the follow ing three years. They found that it was po s sible to predict, at a highly signific a nt statistical level, the three major aspects of ad justment: namely, compliance with the diet, vocational rehabilitation, and psychological condition. They note that there was a slight tend ency to ove re stim ate patients' adjustment potential, and suggest that psychological intervention to help the staff develop a realistic atti tude and to help reduce physicians' denial can contribute to enabling patients to fulfill their adjustment potential. One of first studies of a prosp e ctive nature was that of Sand et al. (19 66 ) with a s ~a ll homogenous group of patients who had no seve r e psycho patho lo gy to b egin with. They found th e following characteris tics to be em piri cally related to adjust me nt: (1) so mew hat higher intelligence; (2) less defensive attitude about admitting to an x iety

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55 or e m otional difficulty, (3) relative pro m inen c e of depression over so ma ticizlng defenses during the pretreat me nt period, and (4) satis factory emotional support from members of the family. They also found that past experiences with illness was important to adjustment. Contrai~ to Oe-Nour and Czaczkes's (1976) finding, they found that the largest nu m ber of errors in prediction arose from predicting "adequate" adjustment for patients who actually came to show "superior" adjustment; i.e., Sand et al. underestimated patients' adjustment potential. In a relatively recent study of many of the sa m e factors as those explored by Sand et al., Greenberg, Weltz, Spitz and Bizzozero (1975) could not find enough evidence to con fir m thdt above average intelligence, willingness to discuss emo tion a l difficulty and anxiety openly, or relative prominence of depression over so ma ticizing defenses in the pretreatment period, could be used as valid criteria for predicting patient adjustment. However, their sample \-Jas very small (n = 7). They did find that stability, maturity, and a professed wi 11 i ngness to cooperate \'Jere valid criteria. The most ambitious and systematic prospective study of adjust ment has b ee n undertaken by Malmquist and her colleagues in Sweden (Malmq uist 1973a, 1973b; Malmquist, Kopfstein, Frank, Pickelsimer, Cle men ts, Ginn & Cro m.;ell, 1972; Malmquist & Hagberg, 1974; Hagberg, 1<;74; H agberg & M 3 lm q uist, 1974). In an initial study \-Jith a s m all s :1mp l e Malmquist et al. (1972) found a perfect correlation between good a d ju stm ent and closeness to mother as an adult. Other variables

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56 sig n i f ic an tl_y c orre l a t ed with good adjust me nt \Vere the l ack of irrit ability and rep or t ed an x i e ty, adaptability t o previous lif e ch ange s, and the l ack of a foca l d e pend e nc e on one par en t (v ersus b o th pare n ts) as a child. These r e sults ar e congru en t with Vied erman 1 s (1974) fi nd in g th a t p a ti ents make an ad apt ive, li m ited regr es sion if t hey h a d a gr at ifying infantile mutuality \ ith th e ir mothers (he do e s not fTi ention t he r e l at ionship with the fathers) which eng en dered a d eep sense of co n fi d e nce h a sic trust and hope which p e rsists in the face of great frus tra tio n and dan ge r. Similarly, Oberley and Oberley (1975) contend t hat precialysis strengths and weaknesses and modes of coping are highli g hted by the dialysis experience and thus can be useful in pre dic ting ad j ustmen t. This is what Mal m quist found in her o wn stu di es (1 9l3a, 1973b). Inter e stingly, Malmquist et al. (1972) found that poor adjust n ~n t was not a predictor of dea t h, whe r eas Cza c z ke s and D e Naur (1978) report that various aspects of adjustment--na m ely, com p liance and psychological condition--do affect survival. In a pros pe ctive study that continued M a lmquist's wor k by in vesti ga ting the p re dictive value of intelligence, cognitive d e ficit and ego defense structures ~ Hagberg (1974) found that although h i gh e r g e nera 1 i nt e 11 i gence and fewer marked signs of organi city prio r t o di aly sis led to more rapid adjust m ent to the t r e at m e nt situ ation th ese f ac tors h ad no predictive v a lu e after 12 months of d ia 1y s is A h abi tu a l di sposi tion to react with a fle x ibly repres s iv 2 d e f e nsive style s eemed to pro mote early ad apt ation, while a habitu 3 l di spos ition to b as ically use isolatio n had a neg a tiv e pro gn o sti c v a lue over th e long term course of tre a t me nt.

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57 In sum m ari z ing the prosp e ctive work of M a l m quist and her col le a g u es, Hag be rg and M a l mq uist (1974) conclud e that in addition to the factors m e ntion e d previously, th e follov1i n9 a r e b as ic prog n ostic indic a tors of rehabilitation: ability for po s itive identification; regular soci a l contacts; "adequate" reaction to kidney disease; and exp e cta t ion of fast rehabilitation. Several prospective studies have sought to use the MMPI as a predictive tool. Freeman, Sherrard, Calsyn and Paige (1980) found profile differences between 107 dialysis patients who had a good, fair or p o or vocational rehabilitation. Marshall, Rice, O'Mera and Shelp (1975) used the MMPI with patients in home dialysis training to form a group of 11 identifiers" who had their highest scale on one of th e first three, indicating an internalizing or somaticizing psychological response, and 11 antagonizers 11 111hose highest scale was on 4, 6 or 9. The results indicated that antagonizers do better in term s of completing training--which suggests that some manifestation of anger is good--while the two groups did not differ significantly in d e gree of overall inferred psychopathology. They also found that age plus classification as identifier or antagonizer was a better predictor of success in training than either variable alone. Ziarnik, Frce i1 a n Sherrard and Calsyn (1977) used the MMPI to co m pare mortality rates. The group of patients who died within one year of initiating dialysis 111ere character ized by feelings of helplessness and high lev els of depression, an x iety and preoccupation with somatic difficulties. Malmquist et al. (1972) found the psychasth e ni a scale ( # 7) to be sig nificantly correlated with adjustm e nt.

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58 Criteria for Assessing Adjust me nt Having reviewed much of the work that h a s investigated p a tient, nurse and famiiy adjustm e nt to dialysis, the question arise s as to the criteria for assessing adjust m ent. The criteria of Bro w n et al. (1974) appear to be typical: "Within the limits of this study, the u1tim a te definition of a patient's adjustment is based on our subjec tive judgement of how well the patient has found purpose and value in his life on ... dialysis" (p. 168). Czaczkes and De-Naur (1978) so un d a similar note in their review of the literature on different as pe cts of adjustment, finding some studies that use clinical impres sions and others that have varying criteria for the same aspect of adjust m ent (for exa m ple, vocational rehabilitation). Some studies have sought to use psychological tests to measure adjustment only to fin d th e profiles falling within normal ranges in direct contrast to the clinical picture (for example, Glassman and Siegel, 1970; Strauch Rahauser, Schafheutle, Lipke and Strauch, 1977). However, Yanagida and Streltzer (1979) have argued for caution in the use of standard psychological tests. First, the tests have been standardized on other populations and, therefore, their reliability for use with dialysis pati e nts is unsubstantiated. The condition of dialysis patients flu c tuates with their fluctuating organicity which makes interpre t a t"io n of results p r oble m atic. Second, dialysis patients are weary of b eing "guinea pigs," particularly for psychological tests which d o n ot h a ve face validity for them and which inquire into private ~sp ect s of their lives. On the other hand, use of tests with face

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59 validity run into problems due to the fact that dialysis patients often exercise high levels of denial and social desirability. Several investigators have focused on particular b e haviors in an effort to establish criteria of adjust men t. Strauch-Rahauser et al (1977) constructed a 30-item scale for use by nurses to rate patients' overt coping behavior in an effort to find signs of psycho logical disturbance that would not manifest itself on standard psycho logic~l tests. Three factors emerged in their study: passive, indif fe ren t behavior concerning treatment, self-destructive behavior directed against treatment, and tense, anxious behavior. De-Naur et al. (1972) had the members of three different medical teams complete a 12-ite m questionnaire describing a 11 good 11 dialysis patient, i.e., a well-adjusted patient. Whereas they had expected a high level of 3gree1 1 ent that would reflect "text book knmvledge" about the criteria of good adjustment, they instead found that 11 intra-team agreement was usually not very high, 11 and "there were no items on which intra-team agreeme rit was high in all three teams. 11 The impact of this lack of agree m ent is summarized by saying, 11 In other words, if there is no clear-cut agree me nt on a code of required and praised behavior, one cJnnot expect high compliance from the patients'' (p. 446). Such a st ate of affairs clearly calls for a remedy in order to aid medical tea m s in deli veri ng quality patient care. T he evaluation of "good adjustment" is ultimately based on sub jective criteria. Who is really to say whether the dialysis patient ,'lith near-perfect compliance to the treatment regimen is better

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60 adjuste d than th e p at i ent who con s id er s life und er such a rigid regi men t o be un ac c ep t ab le and who therefo re ch ooses to abuse the diet and s horten hi s / her life? When philo sop hic a l o r t heoret ic a l arguments cann ot e s tablish th e obj ect ive criteri a for g oo d adju s t me nt, then per haps a c onse ns u s appro ach will yield th e most mean in gf ul criteria. This is es pec ially the case v1hen we ar e not trying to defin e \'1hat good adjust me nt actually is as an a priori category, but are trying to d e lin ea te criteria for care-giving personnel to use as they seek to aid patie n ts in making the best of a bad situation. Those items that a substantial majority of dialysis-involved people consider im po r tant for good adjustment can be used as meaningful criteria. The m a in us e of the criteria is not so much to label a patient as well or poorly adjusted, but to alert the medical staff to certain attitudes and b e h av iors that mos t dialysis-involved people feel should be closely monitored in order to provide the fullest range of quality patient c ar e. Having concluded the review of the literature and set forth the purp ose and context of the present study, the next chapte r will des cribe how the study was conducted. Further cha p t e rs will d es cribe th e r2 su lts and discuss their implications.

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CHAPTER I I METHOD Subjects Subjects were 164 nurses and 79 patients from dialysis centers that are part of Network Nineteen, a state-wide organization in Flor ida that serves as a central administrator for the various dialysis units. There are no demographics on the subjects beyond their class ification as either a nurse or patient. Although there may be age, sexual, class and ethnic differences among the subjects, such demo graphic differences were considered to be outsi~e the focus of this particular study, and will await further investigation. There are undoubtedly selection biases in our sample since sub jects were volunteers, but it is difficult to know in many cases what kind of biases were actually operating. However, a few observations can be made about such possible biases. First, many of the dialysis patients in units where the administrator had agreed to enlist their sJ pp ort (see "Procedu r e" section belmv) were either poorly educated or Spanish-speaking and could not read the questionnaire. Therefore, only p ati ents who could read English participated. Secondly, it is impo ss ible to say whether those patients who did participate were cornp1i Jt1 t-typcs \'1ho may be expected to hold views similar to nurses ab o ut adjustment to dialysis; or whether a substantial number were 61

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62 an gry, "reb ellious" patie11ts \ 1ho e11joyed h av"ing an opportu n ity to st ate th e ir views on t he subj ec t. Third, th e i mpa ct of unit differ en ces i s diffi c ult to ass ess Sin ce th e p a ti en t sa mp l e v~ as dr a1 ,n fr om dialy sis u n its wh e re the h ea d nurse or ad m inistr a tor was presumably interested in go od adju stment as indicat e d by th e ir willingness to pa rtic ip a t e in this study, it perhaps c a n be argued th a t th es e units have an a ~iosphe re or morale more con du civ e to good adjust me nt than do unit s whose heads were not interested in participatin g in the st ud y. Such a morale difference would presu ma bly influence subjects' p e rception of adjust men t. However, for the nurses it was hoped that by having a sa m ple d r awn from a large num be r of units, unit differences wo~ld b2 ad equa tely controlled for a m on g n urse s. Fourth, it seems li k ely that most of th e nurses who did resp o nd are still invest e d in gi ving q ua lity p at ient care, while probably fe~
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63 enli st t he p a rticipation of their nurses and p a tients in the st ~d y. It w a s requ es ted that all nurse s and all p a tients in the unit anony n io usly co m pl e te the qu e stionnai r es, which w e r e th e n to b e coll e cted and return e d by m a il Nine out of th e 16 uni ts return e d que s ti onn a ires co m plet e d by at least so m e of their nurses and patients. Since the h e ads of these 16 units had only a tenuous willingne s s to participate in t h e research, and since we had no leverage with them but their good will, we placed no d e mands on them as to when the questionnaires should b e distributed to the patients. It was felt that by demanding unifor m distributio n timing by nurses who are already very busy, we 1-<10uld have run the risk of losing even more potential data. Although it was re g r ettable not to be able to use such controls, it was felt that for pu r poses of this initial study, it would be best to seek as large a sa m ple as we could reasonably obtain, and not risk the loss of poten tial data Therefore, it is not known what percentage of patients co m pleted the questionnaires before, during, or after being dialyzed on a giv e n day. Questionnaires were mailed to an additional 42 units a1ong with a request that nursing personnel anonymously complete and return th e m by mail. Sixteen of these 42 units returned completed questionnaires. Since qu e stionnaires were sent to a pote n tial sample of approxi mat e ly 8 70 p a tients, our return-rate was therefore approxim a tely 11 % for p at i e nt s. Inform a tion on the size of the potential nurse sample was not available, but a return-rate of appro x imately one-quart e r to on e -third may be a fair esti m at e

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64 The Qu es tionn a ire Tucker et al. (19 8 1) h ave pilot ed a p roject in wh ich th e y have d ev e lope d a 31-it e m q ues tionn a ir e con s i st in g primar ily of b e h a viors and attitu des th at a sample of di a lysis nurses have indicated are relev a nt to th e ass essmen t of patient a djustment, and have asked mem b e rs o f di alys is st a ffs to rate the importance of each ite m to patient adj u st ment. The present study is essentially another step in the p r je:t begun by Tucker's tea m and consistes of two pa rt s: (l) a survey using a revis ed questionnaire, (2) construction of a set of clinical in s t r u ~ ents bas e d o n th e results of the survey. It is assu med th at both nurses and patients have a working con ce~t o f good patient adjustment, whether their concept is clearly d e line a ted or su b c ons cious and ill-defin ed. The questionn a ire used i11 th e su rve y po r tio n of this study (see Appendix A) consisted of two p arts The first p ar t of the questionnaire explored nurses' and pa ti ents' perceptions of good adjustment. This part was composed of 43 i tems de s cribing attitudes, general behavioral patterns, and dir ectly o b serv ab le discrete behaviors relevant to life as a dialysis patient. These it ems were drawn from the initial polling of a sample of nurs es by Tu cker 's team and fro rn previous resea r ch reported in the li terature The item s in c luded the areas of diet and fluids, medica tio n hygiene, treatment rrocedures, interaction w ith staff, interac ti on ~ ith fa m ily, and the p at ient's activitie s and v i e w of self. SJ b j e cts \e r e asked to rate the importance of e ach i te rn for good ad ju s t m2n t to dialysis o n a 4 point scal e according to the follm ling cri ter-ia :

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65 4 =crucial; absolutely necessary for good patient adjustment. 3 = important but not crucial for good patient ~djustment. 2 = somewhat important for good patient adju s t me nt. l = irrelevant for good patient adjustment. The criteria for assessing the level of agree m ent a m ong subjects and groups of subjects regarding the importance of the 43 items for good adjustment were as follows: > 90 % = Consensus 75-89 % = Substantial Agreement 60-74 % = Tendency to Agree <60 % = Substantial Disagreement These criteria are admittedly arbitrary. The rationale behind them is the bias that a gree m ent by a least three-quarters of a sample reflects subst a ntial agree m ent, while agreement by a little over half or less of a sa m ple reflects substantial disagreement. Responses to this first part of the questionnaire were analyzed for differences between (1) nurses and patients, (2) nurses with less than one year of experience with dialysis, nurses with between one and five years of experience, and nurses with more than five years of ex perience, (3) patients with less than one year, between one and five years, and with more than five years of experience on dialysis. Al tho u gh this division of the experience dim e nsion for nurses and patients is als o admittedly arbitrary, the primary purpose was to compare the respons e s of "neophytes" (less than one year of experience) with the r e sponses of "survivors" (more than five y e ars of experience).

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66 Among other things, results fro m this p a rt of the study are use ful i n pointing out .,, a ys in whic h medical personnel's expectations of p a tient behavior differ fro m those of th e patients th emse lv es These diff erences may po se areas of potential conflict betv1een nurses and p atients Secondly, the results are useful in pointing out areas that medica l personnel need to explore in order to co me to a united under standing of the goals of patient care. Those items on which nurses su bstantia lly disagree or only tend to agree regarding their import ance indicate a reas in which personal opinions rei~n instead of solid professional consensus. Thirdly, the results are useful in alerting m ~dica l personnel to any issues that need to be addressed early as t hey seek to orient neophyte nurses and patients to the realities of mak i ng a good adjustment to dialysis. The seco nd part of the questionnaire briefly tapped subjects' glcbal perception of chronic renal failure as an illness, and their fe~ !ing about the patients' role in the treatment. The purpose 'fJaS to e xp lore possible differences between nurses and patients in their global perceptions of the illness and treabnent, as well as how the p e rceptions of patients interact with their r~tings of the importance of the 43 it ems in the first part of the questionnaire. The basic idect of exploring global perceptions of the illness and treatment was drawn from the work of Pritchard (1974a, b, c, 1977, 1979). The Clinical Instruments to Be Constructed The second part of this study took the results of the question n aire-survey and u sed th em to devise a preliminary set of clinical

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67 instru ments with which medical personn e l can n o nintrusively evalu a t e p a ti en ts' adjustm en t. Three different instru m e nts in the for m of ch eck li st s were origin a lly conceived: (l) th e G-S ca le ("G" for "glo bal") v,hich was co mp iled fro m the respon ses of both nurses and pa tients, (2) the N (nurse)-Scale compiled fro m nurses' responses, and (3) the P (patient) scale compiled from the responses of patients. The use of several in~tfuments will point to potential areas of con flict. The criteria used in constructing the clinical scales fro m the results are somewhat stringent, namely, at least 75 % agreement that th e pa rt icular ite m is either important or crucial for good patient adju s t m ent to life on dialysis. It was felt that a lesser degree of agr eemen t indicated a lack of clarity on the subjects' part about th e role of the par ti cula r item in the life of the dialysis patient .u, ltho u gh the scales will yield an adjustment m easure, their pri m ary p urpo se is to alert medical personnel to particular attitudes and beh av ior th a t may require therapeutic intervention. A more detailed de scr iption of th e construction of these clinical instru m ents will be set forth in th e ne x t chapters.

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CHAPTER III RESULTS An~es of Results from the Questionnaire-Survey There were five sets of analyses from the results of the survey usi:19 the questionnaire. Three of these sets contained analyses of the results from the first part of the questionnaire in which sub jects rated the importance of 43 different items for good patient ad just m ent to dialysis. Another set contained analyses of the results fro m the second part of the questionnaire in which subjects briefly c2scribed their global perceptions of chronic renal failure and treatment by dialysis. A final set of analyses was originally in tended to assess the relationship between patients' global percep tions of their illness and treatment, on the one hand, and their rat ings of the importance of the 43 items in the first part of the ques tionnaire, on the other. However, difficulties were encountered with this final set of analyses as will be described below. Cq~rison of Nurses and Patients The first set of analyses compared the ratings by nurses with the ratings by patients of the 43 items in the first part of the question nJirc. Table 3-1 presents the frequencies and percentages of responses for each group for each of the 43 ite m s along with the calculations of 68

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69 TABLE 3-1 Frequ enc i es and Percentages of R es;J onses p e r Ite m fo r Nurses ( N ) (n = 1 64 ) a nd Patients (P) ( n = 79) (4 =Crucial, 3 = I m port an t, 2 = So me wha t I mporta nt, 1 = Irrel e v a nt) R atings -4 I 3 2 1 Freq. I Fr eq Freq. Freq. 0 / /0 % % % .u N p N p N p N p X it 1 1 33 65 2 8 8 2 3 0 2 7.64 81. 6 83.3 17.2 10. 3 1.2 3.8 0 2 6 2 1 09 46 52 21 2 6 0 4 16.01** 66.9 59.7 31. 9 27.3 1. 2 7.8 0 5.2 3 13 8 58 23 12 2 5 0 2 9.84* I 84 7 75.3 14. 1 15. 6 1. 2 6.5 0 2.6 4 I 123 56 39 14 l 5 0 2 12.30** 75.5 72. 7 23 9 18.2 0.6 6.5 0 2.6 5 I 118 60 39 12 6 3 0 2 6. 17 72.4 77 .9 23.9 15. 6 3 7 3.9 0 2.6 6 140 67 2 4 10 0 1 0 1 4.30 85 .4 8 4.8 1 4 .6 12. 7 0 1.3 0 1.3 7 120 64 42 12 1 1 0 2 7.45 73.6 81.0 25.8 15. 2 0.6 1.3 0 2.5 8, 40 58 92 14 27 4 5 2 55 50 **** I 24.4 74.4 56. l 17. 9 16.5 5. 1 3.0 2.6 91124 6 8 38 9 1 1 l 1 5. 12 75.6 86. 1 23.2 11 .4 0.6 1.3 0.6 1.3 10 2 8 52 l 05 21 26 1 5 4 63.9 8**** l 7 l 66.7 6 4 .0 26.9 15.9 1. 3 3.0 5. l l l J 28 31 85 28 3 4 5 13 10 22.26 *** I 17 5 41. 9 53. l 37.8 21. 3 6.8 8. l 13.5 I 12 42 46 97 22 23 6 2 4 31 50* *** 25.6 59.0 59. l 2 8.2 14.0 7.7 l. 2 5. l I 13 l 44 42 81 23 24 4 11 7 20.23*** I '27 .5 55.3 50.6 30.3 15.0 5.3 6.9 9.2 I 14 10 2 2 I 60 15 36 12 57 27 25.99**** I 6. 1 2 8 .9 36 8 19. 7 22.1 15. 8 3 5.0 35.5

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70 Tabl e 3-1--Continued. 4 3 2 --+---l Fr eq. Freq. Freq. Freq. % % % % :ll N p N p N p N p X ,;10 32 s ~r 22 6 2 10 28 lt 49.20 ** ** :J 6.3 42. l 37. 1 28.9 39.0 13. 2 17. 6 15.8 l 6 32 44 82 19 35 11 14 3 34.44*** * 19. 6 57. l 50.3 24.7 21. 5 14.3 8.6 3.9 7 3 13 36 10 42 11 81 41 23.41**** l. 9 17.3 22.2 13. 3 25.9 14.7 50.0 54.7 l 8 14 32 60 18 54 5 33 20 48.67**** 8.7 42.7 37.3 24.0 33.5 6.7 20.5 26.7 l 9 7 17 64 12 52 14 39 27 32.42**** 4.3 24.3 39.5 17. l 32. l 20.0 24. l 38.6 2 0 tlQ 52 87 19 29 7 3 42.56**** v 24.5 67.5 53.4 24.7 17.8 3.9 4.3 3.9 2 l 42 38 80 23 33 8 8 8 18.55*** 25.8 49.4 49.l 29.9 20.2 10.4 4.9 10.4 2 2 76 59 70 15 16 3 l l 19 01*** 46.6 75.6 42.9 19.2 9.8 3.8 0.6 l. 3 2 3 23 42 65 21 55 10 20 5 43.67**** 14. l 53.8 39.9 26.9 33.7 12 .8 12.3 6.4 2 4 29 38 75 15 49 13 10 3 37. 9l** H 17.8 48.1 46.0 19. 0 30. l 16.5 6. l 16.5 2 5 44 47 70 18 34 5 14 8 28.06**** 27.2 60.3 43.2 23 .1 21.0 6.4 8.6 10. 3 2 6 11 35 62 14 45 13 43 16 50.06**** 6.8 44.9 38.5 17. 9 28.0 16.7 26.7 20.5 2 7 66 56 74 19 19 3 4 1 20.04*** 40.5 70.9 45.4 24.1 11. 7 3.8 2.5 l. 3 8 45 36 69 21 38 5 9 14 2:i.85**** 28.0 47.4 42.9 27.6 23.6 6.6 5.6 18.4 I I 2 I 9 14 54 70 16 58 7 21 2 95.50** ** 8.6 68.4 42.9 20.3 35.6 8.9 12.9 2.5 o I 43 38 77 16 3 8 9 6 12 31.43**** 26.2 50.7 47.0 21. 3 23.2 12 .0 3.7 16. 0 I 2 I 13 I

PAGE 80

Table 3-1--Continu e d. 4 Freq. Cl lo # 1 N p ~31 r 39 44 23.8 57.9 32 39 45 23.8 60.0 33 64 54 39.3 70. 1 34 21 30 12 9 38.5 I 35 116 69 I 71. 2 88.5 I 36 72 44 43.9 58.7 37 11 36 6.7 48.0 3 8 65 52 39.6 68.4 39 44 41 27.0 53.2 40 97 54 I 59 l 70. l 41 45 41 27.4 54.7 42 2 22 1. 2 28.6 I 43 l 30 42 I_ 1 8.4 55.3 *p < 05 **p < .01 ***p < 001 '"** p < 0001 3 Freq. % N 92 56. 1 91 55.5 77 47.2 87 53.4 40 24.5 77 47.0 83 50.6 81 49.4 94 57.7 56 34. l 84 51. 2 58 35.6 88 54.0 p 23 30 3 20 26.7 15 19. 5 23 29.5 6 7.7 13 17. 3 21 28.0 19 25.0 22 28.6 16 20.8 17 22.7 10 13. 0 14 18.4 71 l l Freq. Freq. % % N p N p X 2 8 7 5 2 26. 94 *-,. '** 17. l 9.2 3.0 2.6 28 7 6 3 30.53**** 17. 1 9.3 3.7 4.0 19 6 3 2 21.54*** 11. 7 7.8 1.8 2.6 37 14 18 11 23.88**** 22.7 17.9 11. 0 14. 1 5 2 2 l 9.95* 3. 1 2.6 1. 2 1.3 13 9 2 9 28.22**** 7.9 12.0 l. 2 12.0 54 8 16 10 61.01**** 32.9 10. 7 9.8 13.3 17 0 l 5 31.52 **** 10.4 0 (0.6) (6.6) 19 6 6 8 24. l 2* *H 11. 7 7.8 3.7 10.4 11 3 0 4 13.38* 6.7 3.9 0 5.2 33 5 2 12 45.59**** 20. l 6.7 l. 2 16.0 56 11 47 34 59.71**** 34.4 14.3 28.8 44.2 35 10 10 10 43.70** ** 21. 5 13.2 6. l 13.2 (No te : frequencies for each item may not total 164 for nurses and 79 for pat-ients since some subj ects did not respond to all 43 ite ms.)

PAGE 81

72 chi-s qua re for eac h ite m Th e im por t ance-roti ngs b y n u r ses and pa tie nts were significantly differ e nt at th e .05 level or le ss for 3 8 o f th e 43 it e m s Of particular int erest i n thi s t a b l e i s the differ e n c e in t he p er c entages of each gr ou p v1ho s a \ .,, an it e m as "c ruc i a l, a bso lu te ly necessary fo r good adju stment. The follo 't 1i n g it em s (r ep rese nted b y short d escr i pt ive ph r ase s a n d list ed in de sce ndin g ord e r of magnitude of difference) were seen as "crucial'' by at least a third m ore patients th an nurses (i.e. there \v as a difference in p e rce ntage s of at least 33.3 between p a tients and nu r ses who gave th e it e rn a rating of "4 ," with patients ah 1ays having the greater p e t c e ntage ): N % P % Diff. (29) exhibits friendly, pleasant pers o nality 8.6 68 .4 59.8 ( 8) d e m onstr ates good hygiene 24.4 (10) arriv es on ti me for all treatments 17.1 (20) mature interpersonal behavior with staff 24.5 (37) seldo m d epr essed 6. 7 (23) qu e stions medical charts and regi mens 14.l (26) no frequent phone calls to unit 6.8 (16) much p a rticipation in treat me nt 19.6 74.4 50.0 66.7 49.6 67.5 43.0 48.0 41.3 53.8 39.3 44.9 38.1 57.l 37.5 ( 43 ) ma int ai n s s ame soci a l life as before (32) mature inte rperso nal b eha vior with 18.4 5 5. 3 36.9 family (15) needl e sticks are insignificant (31) h ea lthy independ enc e fro m family (1 8 ) holds o w n n eed le sites (12) int eres t ed in gaining knowledge of s itu a ti on 23.8 6.3 23. 8 8.7 25.6 60.0 36.2 42.1 35 .8 57.9 34.1 42.7 34.0 59.0 33.4

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4 r (1) -t, 3 ...... 3 0 ) rt2 OJ ::, n m l *In makin g TABLE 3-2 Categorization of Items According to Level of Importance and Leve of Agreement Within and Between Groups* Consensus Substantial Agreement Tendency to Agree ( l ) understands diet (2) complies with diet (3) understands fluids (6) takes medications (9) present for a 11 treatments I I determinations for inclusion or exclusion, p ercenta es were rounded to nearest inter e g gr.

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74 Th e following are additional ite ms \-Jhich were seen as "crucial" by at least a q ua rter more patients than nurses (i.e., a difference in per centages of at lea st 25.0, with patients always havi ng the greater p ercentage ): N % p o' lo Diff. (25) no inappropriate anger towards staff 27.2 60,3 33.l (33) discusses dialysis problems with family 39.3 70. 1 30,8 (27) cooperates with staff 40,5 70.9 30.4 (24) frequently interacts with other patients at center 17.8 48.1 30.3 (22) discusses dialysis problems with staff 46.6 75,6 29.0 (.38) strives to establish meaningful daily routine 39,6 68.4 28,8 (13) no psychological difficulties with machine 27.5 55.3 27.8 (42) seeks contact with other dialysis patients outside the unit 1. 2 28.6 27.4 ( 41 ) not d\-1el1 on illness and treatment 27.4 54,7 27.3 (39) involved in outside activities 27.0 53.2 26.2 (34) ex er cises regularly 12.9 38,5 25.6 There were only four items (2, 3, 4, and 6) which a greater percent age of nurses than patients rated as "crucial 11 the greatest differ ence 3 in p er centages being 9.4. Moving away from ra1 -1 frequencies and percentages, the ne xt table (Tabl e 3-2) is a first step in grouping ite ms according to the level of a greeme n t both within and betw ee n groups Levels of agreement are de fined a s follo ws :

PAGE 84

75 >90 % = Consensus 75 89 % = Substantial Agree m ent 60-74 % = Tendency to Agre e ~50 % Substantial Disagr eem ent An ite m must fall within the same level of agree m ent concerning its level of importance for both groups in order to be included in Table 3-2. For example, if 78 % of the nurses rated the item as a 11 4 11 while 82 % of the patients did, that item would appear in the "Substantial Agree m ent 11 column, rm<1 11 4. 11 However, if 78 -; ~ of the nurses rated the item as a 11 4 11 while 62 % of the patients did, then that item would not ap p ear in the table because the percentages of both groups did not fall within the same level of agreement. An item 4 s appearance in the table indicates that both groups have roughly the same amount of agree me nt within the m selves and between the m selves about that item's i m portance in good patient adjustment to dialysis. (Note: for all tables and lists of items, only short descriptive phrases are used for each item. See the questionnaire in Appendix A for a full des cription of each item.) The importance of Table 3-2 is that for 38 of the 43 items, there v:2s eith 2 r substantial disagreement within one or both groups regard ing the level of importance of an item, or both groups did not have the same level of agree m ent regarding its impo r tance. Although the defin itions of the levels of agreement are ad m ittedly arbitrary, there were only five other items that would have b e en includ e d in the table if the distribution of responses in either one or both groups had been different by as much as five percent ag e points:

PAGE 85

76 ( 4) c omp li es wi th flu i d int a k e r estr icti ons ( 5) d oes n ot abuse al co h o l or drugs ( 7) c ornp li es w ith physic i an s o rd e rs (3 5 ) acc ep ts r ea 1ity o f k id ney di sea s e an d di a ly s i s ( 40 ) p 2 rc e i ves s e 1f a s a tot a l p ers on N o ot her ite m s ca me clo se to b e ing included in the table, ev e n if th e d .; s tri bu ti o n of resp o nses in one or both gro up s ti a d been different by as m u c h as 13 pe r cent a ge points. In su m this m e ans that for 33 our c f 43 ite ms n u r s e s and p a tients dis ag reed to a note i,'t' orthy e x tent as to j us t h ow i m portant those items are for good patient adjustme n t to d ia l y~ i s H ow ev e r wh e n the clinical situ a tion is the focus of considera t i o n the d ata c a n yield a so m e w h a t different picture. Even though t h en,: ma y no t b e substa n tial agree men t about whether a p a rticul a r it em i s cru c ial for good adjustment or whether it is si m ply important fo r good adjus t m e nt, t he re may be substantial agree me nt th a t the ite m is at le a st i m po rt ant for good adjust me nt and, therefore, deserve s clo s e m o n ito r in g in the clinical situation. If for each group the p e rce nt ?. g e s of those subj e cts who rated the i tern as "crucial" and tho se \ v h o rated it as "im p ortant" are su m me d, a pictu r e e mer ges of t he l ev e l of ag r ee m ent both within and bet w e e n gtou p s about w h e th e r o r no t an ite m is pe r ceived as b e ing at least import a nt fo r g o od ad j u st m ~n t. Thi s p i ctur e is reflect e d in T a ble 3-3. As c a n be see n fro m T ab l e 3 3 ) nu rses an d patients at le as t tend ed to agree th a t 33 o f t he 4 3 ite ms a r e at l e ast import a nt for goo d adju s t me nt (i.e., at

PAGE 86

77 least 60 % of both groups p e rceived each of the 33 ite ms as being at leflst import an t). This leaves the follo wing nine ite ms about which th ere ~as substanti a l disagreement either within or b etween groups reg a1 d i ng their clinic a l impo r t a nce: ( 14) gives serious thought to kidn ey tran s plant ( 15) reacts to needle sticks as insignificant ( 18) holds 0 1,m needle sites (19) does most of self-care during treatment (23) q uest ions nursing charts and regi m ens (26) does not make frequent calls to unit (29) exhibits friendly, pleasant personality (37) seldom depressed (42) seeks contact with dialysis patients outside unit There w as one ite m ( # 17: 11 Patient e x presses interest in hom e dialysis tntining") regarding \ v hich nurses (75.9 % ) and patients (69.4 % ) at le as t tended to agree that it is either irrelevant or only somewhat i111portant for good patient adjustment. The information gleaned from Tables 3-2 and 3-3 provided the basis for constructing a clinical instrument (the G-Scale) that re flects criteria for good adjustment on which both nurses and patients ca n agree. The d e scription of, and rationale for, the construction of this instru m ent will be presented below under 11 Construction of C:lir. i cal Instru men ts. 11

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' ro < ro Co mbin e \ Leve 1 s 1 3 & 4 I 0 1 --+, ...... 3 ""Cl 0 r+ p, ::l () ro TABLE 3-3 Categorization of Items According to Level of Agreement Within a n d Between Group s that an It e m 1 s at le as t Im port tl. nt fo r Good Adjustment* Consensus Substantial Agreement I Tendency to Agree 1 ( 1) under s t a nds diet (2) compli e s with diet (11) not overly anx i o us (3) underst a nds f luids restrictions a bout tre a t me nt (4) co mp lies with fluid (8) good hygiene (16) p a rticip at es mu ch in restrictions (10) on ti m e for treatments tre a t m ent (5) n ot abuse alcohol (12) interest in gaining (24) frequent l y inter a ct s ( 6 ) ta k es medications knowledge of illness with pat i en t s whil e (7) follows doctor 1 s orders and treatment at unit (9) present for all treat(13) no psychological diffi(25) no inappropriate ments culties with machine anger at s taff (22) discusses dialysis (20) mature interpersonal (28) not try to m a nipulate problems with staff behav i or with staff staff for m or e a tt e n(35) accepts reality of (21) healthy independence tion situation from staff (30) not exagger a te co m (40) perceives self as (27) cooperates with staff plaints t otal person (31) healthy independence (34) exercises regul a rly from family (43 ) m aintains s ame so c ia l (32) mature i nterpersonal life as before d ial I behavior with family ysis be ga n (33) discusses dialysis I problems with family (36) continue with age ap pro p riate tasks (38) establishes meaningful da i1 y routine (39) involved in outside activities (41) not dwell on situation *In making de t er m 1nat1on for 1nclus1on or exclusion, percentages were rounded to nearest 1nt er ge r. --..J co

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79 An a lysis of Nurses D a ta A second set of an a lyses took the d ata from nurses and analyz ed it in t wo diffe re nt mod es Fir st, nurs e s w e r e taken a s a whole group; and secondly nurses were divided into thre e groups according to their exp er ience. Nu rs es as a whole group The pattern of agreement among nurses as a whole group regarding specific aspects of good patient adjustment can be set forth in tables a na lo gous to Table 3-2 and 3-3 using the nurses' data found in Table 3-1. Table 3-4 groups items according to the level of agreement a m ong nurses concerning the importance of the ite n1 s, while Table 3-5 groups items according to the level of agreement when percentages of nurses ,,,ho rated ite m s as "crucial" or "im por tant" are sum m ed. Criteria for levels of agreement are the sa m e as defined above. In addition to the items included in Table 3-4, there were two other ite m s concerning which nurses were within one percentage point of meeting the criteria for "Tendency to Agree": namely, item #12 ("Patient shows interest in gaining a good working knowledge of his/ her illness and treat me nt"), and item #4 0 ("Patient perceives self as a tot a l person"). A simple majority of nur ses agre e d on the level of importance of 13 of the re m aining items (8, 11, 13, 16, 17, 20, 31, 32, 34, 37, 39, 41, 43) v1hile for 18 item s th ere was substantial dis agre emen t as to just hov, i1 np ortant the ite ms a re for good patient adjusb n ent. As can be seen from Table 3-5, nurses at least tended to

PAGE 89

r /'t) < (D 0 -ti I 4 3 2 1 TABLE 3-4 Categorization of Items According to Level of Importance and Level of Agreement ~no ng Nurses as a Whole Group* Consensus Substantial Agreement Tendency to Agree ( 1) unaerstands diet (2) complies with diet (3) understands fluids I (5) not abuse alcohol (4) complies with fluids (7) follows doctor's (6) takes medications orders (9) present for a 11 treatments *In making determination for inclusion or exclusion, percentages were rounded to nearest interger. co 0

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r11) < (0 _, 0 -to TABLE 3-5 Categorizat i on of Items Accordin g to Leve l of Agreement ~ m ong N W h 1 G th t It t 1 t I t t u rses as a o e roup a an em ,s a ea s m 12 or an Consensus Substu!"ltial Agreement Tendency to Agree C o m bi n e ( l ) under sta nds diet ( 1 0) on ti m e for treat m ents ( 11 ) not ove r ly anxious / L e ve 1 s ( 2 ) comp 1 i es with di et ( 12) interest in gaining about treat me nt 3 & 4 ( 3) u n d e r s tands fluids knowle d ge of illness ( 16) particip a tes m uch (4 ) c omp lies with fluids and tre a tment in tre a t m ent (5) no t abu s e alcohol ( 13) no psychological dif(24) frequently interacts (6) takes medications ficulties with machine with patients wh i le ( 7) follows doctor's orders (20) mature interpersonal at unit ( 8 ) good hygiene behavior with staff (25) no inappropriate ( 9) present for a 11 treatments ( 21 ) healthy independence anger at staff (22) discuss dialysis from staff (28) not try to manipuproblems with staff (27) cooperates with staff late staff for m ore (X) __. (35) accepts reality of (31) healthy independence attention I I situation from family (30) not e x ag g erate co m I (36) continues with age(32) mature interpersonal plaints I appropriate tasks behavior with family ~34) exercises regularly (40) perceives self as (33) discusses dialysis 43) maint a ins sa m e sotota l person problems with family cial 1 i fe as b efor e (38) establishes mean i ngful dialysis began daily routine (39) involved in outside activities (41) not dwell on situation *In m aking deter m ,nat,on for 1nclus1on o r exclusion, p ercentages were rounded to nearest ,nt erge r.

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82 agr ee th a t 33 of the 43 it e ms are at least i mp o r tant for good adjust m e nt. There w a s substantial disagre emen t a mong nurs e s r e garding the clini ca l i1 np ort a n ce of t he follo~ving nin e it ems : ( 14) gives serious thought to kidn e y tr a n s plant ( 15) reacts to needle sticks as insig n ificant ( 18) h o lds o\'m needle sites (19) does most of self-care during treatment (23) questions nursing charts and regimens (26) not make frequent calls to unit (29) exhibits friendly, pleasant personality (37) seldom depressed (42) seeks contact with dialysis patients outside unit (Note th a t these are the same nine items that were not included in Table 3-3.) However, nurses substantially ~greed {75.9 % ) that item #17 ("Patient expresses interest in home dialysis training") is eHher irrelevant or only somewhat important for good adjustment. The information gleaned from Tables 3-4 and 3-5 provided the basis for constructing the N-Scale (see below). ~ll .. rses grouped by experience ~urther analysis of the data from nurses investigated the rela tionship between nurses' amount of experience with dialysis and their ratings of the impo r tance of each of the items for good adjustment. Nu r ses w e re placed in one of three groups according to a m ount of ex p er i e nc e a s a dialy s is nurse: (l) "n e ophytes" with less than one year of ex e rience, (2) nurses with bet w e e n one and five years, and (3)

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83 "surv vors" who have more than five years of experience. Frequencies and percentages of responses according to amount of experience are pre sen t e d in Appendix B. From the chi-squ are calcul at ions included in App end ix B, it can be seen that groups of nurses differ to a sta tisti ca lly significant degree (p < .05) in their overall distribution of responses on only one item, namely, item #2 ("Patient complies with dietai~y restrictions"). Ho w ever, in light of the many chi-squares calculated for these groups it is possible that this particular dif ference is only an artifact. In addition, there were only two other ite m s whose chi-squares approached statistical significance (p < .10), namely, item #5 ("Patient does not abuse alcohol or drugs") and item # 9 ("Patient is present for all treatments"). Even when only "neo phytes" and "survivors" are compared, there is only one item for which the chi-sq u are is statistically significant, namely item #5 ("Patient does not abuse alcohol or drugs"). Furthermore, it is interesting to note one of the basic ways in which the patterns of responses differed for these three ite ms (items # 2, 5, 9): for all three, a substantially larger percentage of neophytes than survivors the item as crucial for good adjustment (a difference of 19 percentage points for item #2, 28.3 for item # 5, and 23.7 for item #9) > Th e p attern of agreement a mo ng nu rs es grouped by experience can, ho wever b e set forth in a different manner in tables an a logous to Tabl es 3-2 and 3-3, using the nurses' d a ta from Appendix B. Table 3-6 group s it em s according to the level of ag r ee ment a mong groups of

PAGE 93

t (!) < (D 0 -I) 1--< 3 '"O 0 rt 0, ::, n (D T/\BLE 3-6 Categorization of Items According to Level of Importance and L l f A t A N G d A d' t ,. eve 0 greernen mong urses roupe ccor nq o c.xper,ence Con sens us Substantial Agreement Tendency to Agree I ( 1 ) unders ta nds diet ( 35) accepts reality of (3) understands fluids situation I I 4 (6) takes medications I (1 0; on time for all I treatments 3 ,_ 2 l I *In making de t e rmination for 1nclus1on or exclusion, percentage s were rounded to nearest 1nter ger.

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TABLE 3 -7 Categorization of Items Accordin g t o Level of Agreement Among 1 _ ____ N u rse s Grou pe d by E x p erienc e th a t an It em i s at 1 ea s t I m po rta nt* Con se nsus I Subst a nti a l Agre eme n t Tendency to Agree fo m b1n e Levels r (l) < ro 0 -t, 3 & 4 I I ( l ) un d ers ta nd s di e t I ( 2) compli e s w ith diet ( 3) un d erstan d s fluids ( 4 ) co mp lie s with fluids ( 5) not abuse alcohol ( 6) ta k es medications ( 7) follows doctor's orders (9) present for a 11 treatments (22) discusses dialysis problems with staff (35) accepts reality of s itua ti on (36) continues with agea p propriate tasks (40) perceives self as a tota 1 person (8) good hy g iene ( ll ) not overly a r.xi ou s (10) on ti m e for treatments about tre a t m ent (12) in t erest in gaining ( 13) no psycho l o g ic al knowledge of i~lness dif f ic u lti es w it h and treatment m achine ( 16) pa r ticipates much in (24) freque n tly inter a cts treat m ent with patients wh i l e (20) mature interpersonal at unit behavior with staff (30) not exaggerate co m ( 21 ) healthy independence plaints from staff (34) exercises regula rl y (27) cooperates with staff (43) maintains sa m e s o(31) healthy independence c i al 1 i fe as be for e from family dialysis b ega n (32) mature interpersonal behavior with family (33) discusses dialysis problems with family (38) establishes meaningful daily routine (39) involved in outside activities {41} not dwell on situation I I I I *In making determination for inclusion or exclusion, percentages were rounded to nearest 1n t e rge r. co u,

PAGE 95

86 nurses concerning the importance of the ite ms while Table 3-7 groups ite m s according to level of agreement when percentages within each group of nurses 1;Jho rated ite m s as 11 crucial II or "important 11 are su mmed The s ame criteria for levels of agre~n en t used in preceding tables are also e mp loyed here. The i m portance of Table 3-6 is th a t when nurses were grouped ac cording to experience, there was either substantial disagreement within or.2, two or three groups regarding the level of importance of 38 of the 43 ite m s; or all three groups did not have the same level of agree ment regarding their importance. Furthe rm ore, there were only four other items that would have been included in the table if the distri bu t io n of responses in any of the groups had been different by as m uch as five percentage points: { 4) co m plies with fluid intake restrictions { 7) complies with physician's orders { 8) good hygiene practices (12) interest in gaining knowledge of illness and treatment In sum, this means that for 34 out of the 43 items, nurses grouped acco rd ing to experience disagreed to a noteworthy extent as to just ho ~ i mp o rtant those ite m s are for good p at ient adjustment to dial ysis Tw ri in g to Table 3 7, which is meant to better reflect the clinic a 1 situation by grouping items according to whether or not th ey ar e se e n as being at least important for good adjustm e nt, we c an s ee t ha t nurses with different levels of experience at least

PAGE 96

87 tend ed to agree that 31 out of the 43 ite ms are at least i m portant. As would be e x pected, ther e was substantial di s a greemen t a m ong the three nurs e g r oups r e g arding th e clinic a l i mportance of th e s a m e nine it ems conc er ning which nurse s t aken as a w ho le group disa greed (see above). Si m ilarly, all three group s tended to agree item # 17 ("Patient ex pre ss es interest in home dialysis training 11 ) is either irreleva n t or only so me what important for good adjust men t. However, there were tvw ad d itional items about which nurses disagreed when grouped by amount of ex per ience: (25) no inappropriate anger towards staff (28) no manipulation of staff for additional attention In bot h cases, the more-experienced nurses (i.e., the "survivors") sub st~nt ially agreed that these items are at least i mp ortant for g o od adjust me nt, whereas the 11 neophytes 11 did not even tend to agree they are at least important. (i.e., 75 % of the survivors saw item #25 as at least important while only 58.6 % of the neophytes did; and for item # 28, 84 % of the survivors compared to 57.1 % of neophytes saw the it em as at least important. In both cases, however, a difference of less than three percentage points in the neophyt e group w ould have resulted in the items being included in Table 3-7.) 0na .J1s is of Patients 1 Data A t h ird set of analyses took the data from pat ients and an.:J.lyzed it in t v iO different modes. First, patients were ta ke n as a \'/hole gr oup ; and, secondly, patients were divided into thr e e groups accord i ng to their e x perience.

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88 Patients as a whole grou_2_ The pattern of agreement among patients as a whole group regard ing specific aspects of good adjust me nt is set forth in Table s 3-8 and 3-9 using the patients' data found in Table 3-1. Table 3-8 groups items according to the level of agree men t when percentages of patients who rated items as 11 crucial 11 or 11 important 11 are su mme d. Criteria for levels of agreements are defined as above. In addition to the items included in Table 3-8, there were two other ite m s concerning which patients -v,ere within one percentage point (including rounding) of meeting the criteria for "Tendency to Agree": namely, item #12 ("Patient sho1t1s interest in gaining a good working kno ,,.1 ledge of his/her illness and treatment"), and item #36 ("Patient continues with age-appropriate tasks, such as schooling, employment, ho useho ld care"). A simple majority of patients agreed on the level of i mp ortance of nine of the reamining items (13, 16, 17, 23, 30, 31, 39, 41, 43), while for 12 items there was substantial disagreement as to just how important the items are for good patient adjustment. As can be seen from Table 3-9, patients at least tended to agree that 39 of the 43 items are at least important for good adjustment. There was substantial disagreement among patients regarding the clini cal i m portance of the following three items: (14) gives serious thought to kidney transplant (19) does most of self-care d u ring treat m ent (42) se eks contact with dialysis patients outside unit Pati e nts tende d to agree (69.4 % ) th at item # 17 ("Patient expresses interest in ho me di aly sis training 11 ) is either irrelevant or only

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' (D < ro _, 0 -h 3 -0 0 -s rt OJ ::, n (D TABLE 3-8 Categorization of Items Acco r ding to Level of Importance and L 1 f A A P ''h l G eve 0 ,gree rn ent mon g at,ents as a ,-i o e roup I I Consensus Subst a ntial Agreement Tendency to A g ree ( l ) u n derstands diet (2) co m p l ie s \l ti t h di et ( 3) u n derstands fluids (4) co m plies w i th flu i d s (5) not abuse alcohol (8) good hy g i e ne (6) ta k es medications ( l O) on ti m e f or tre a t( 7) follows doctor's orders ments (9) present for all treatments (20) mature interper s on al { 2 2) discusses dialysis probbehavior w i th s taff lems with staff (25) no inappropriate (35) accepts rea l ity of situanger at staff 4 ation (27) coopera t es \
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r (') < (t) 0 --t, 1 ~ -c 3 "'C 0 .-t o, :::::s n (t) ,--I Co m bine Levels 3 & 4 I I I I I I TABLE 3-9 ~ Categor i zation of Items According to Level of Agr2ement Among Pat i ents as a Whole Group t ha t a n Item is at least I m oortant* ----,---Con s er.sus ( l) underst a nds diet ( 11 ) I ( 2) co m plies with diet ( 3) understands fluids ( 12) : ( 4) co m plies with fluids I ( 5) not a buse alcohol ( 6) takes medications ( 13) ( 7) f ollows doctor's orders ( 8) good hyg i ene { 16) (9) present for a 11 treatments ( 21 ) (10) on time for treatments (20) mature interpersonal (23) behavior with staff (22) discusses dialysis (25) proble m s wit h staff (27) c o operates with staff (28) (33) d iscusses dialysis proble m s with family (29) (35) accepts reality of situation ( 31 ) (38) e st a blishes meaningful daily routi r.e (32) ( 40) perceives self as a total person (36) (37) (39) ( 41 } Substantial Agreem ent not overly a nxiou s 15 about treatment interest in gaini know1edge of illn and t reatm e nt no psychological ng I ( 18) ess diffiI ( 24) culties with mach ine participates much in treatment (26) healthy independe nee from staff (30) questions medical charts and regimens ( 34) no in a ppropriate anger (43) with staff not manipulate st aff for more attentio n friendly, pleasan t personality healthy independe nee from family mature interperso nal behav i or with fam ily continues age-app ropri n te tasks seldom depressed i nv0lveci in outsi ac t ivities not dwell on situ de I ation Tende n cy to Agre e reacts to n e edle stic k s a s insig nificant holds own needle sites frequently interacts with patients while at unit no frequent calls to unit not exaggerate com plaints exercises regularly ma i ntains same so cial li f e as be f ore dic:lysis be g an *In making determination for 1nclus1on or exclus1on, percentages were rounded to nearest int e rg e r. \.D 0

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91 so me w ha t i m portant for good adjustm e nt. The infor m ation gleaned from Tabl es 3-8 and 3-9 provided the basis for co ns tructing the P-Scale (se e b e lm i). Patient s grou pe d by experience Furthe r analysis of the data from patients investigated the rela tionship between patients' amount of experience with dialysis and th e ir ratings of the importance of each of the items for good adjust ment. Patients were placed in one of three groups according to amount of e x p e rience as a dialysis patient: (1) "neophytes" with less than on e y ea r of experience, (2) patients with between one and five years, and (3) "survivors" with more than five years of experience. Frequen cie s and percentages of responses according to amount of experience are presen t ed in App e ndix C. Since there were only 12 neophytes and 14 survivors, our results can only be suggestive. Furthermore, chi squares are not recorded since for all 43 items at least one-half of the cells had expected frequencies of less than five. Given such a small sample of neophytes and survivors, and the fact that a difference in a very few subjects in either group could have substantially altered the percentages, tables analogous to pre viou s onesin which items were categorized according to level of agree m e nt a ~on g subjects concerning the items' level of importance will not b e constructed. Perhaps the most that can be gleaned from our data regarding the difference between neophyte patients and those who are survivors is to note those ite m s which one group tended to rate

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92 as more important than the other group rated them. The following items are those concerning which the two groups differed by at least 20 percentage points in rating the items as 11 crucial" (in descending order of magnitude of difference): (21) healthy independence from staff (30) not exaggerate complaints (25) no inappropriate anger at staff { 8) good hygiene (38) establishes meaningful daily routine (32) mature interpersonal behavior with family (24) frequent interactions with patients at unit (26) no frequent phone calls to unit (13) no psychological difficulties with machine (29) exhibits friendly, pleasant person ality NPH % SVR Diff. of /0 25.0 71.4 46.4 50.0 84.6 34.6 50.0 78.6 28.6 66.7 92.9 26.2 36.4 61.5 25.1 41.7 66.7 25.0 33.3 57.l 23.8 33.3 57 .1 23.8 50.0 71.4 21.4 50.0 71.4 21.4 (33) discusses dialysis problems with family 58.3 78.6 20.3 In all cases, a greater percentage of survivors than neophytes saw the item as crucial for good adjustment. Global Perceptions of Illness and Treatment by Nurses and Patients A fourth set of analyses compared the responses of nurses and patients to the second part of the questionnaire which contained two forced-choice questions: (1) whether the subject sees the illness as

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93 bein g an unjust, ove rw hel m ingly de structi ve en em y or as one of life's chall eng i ng chan~ e events, and (2) whether the subject fe e ls he/she can be act iv e ly involv e d in treat me nt or must b e b a s ic a lly passive. The results are shown in Tables 3-10 and 3 11. Illness TABLE 3-10 Frequen c ies and Percentages of Perception of Illness by Group Group Nurses (n = 144) Chance Event 99 (68.8 % ) Unjust Enemy 45 (31.3 % ) Patients (n=77) 64 (83. 1 % ) 13 (16.9 % ) Co r rected Chi-Square= 4.64, .e_ < .05, phi = .16 Trea tme nt TABLE 3-11 Frequencies and Percentages of Perception of Treatment by Group Helpless Involved Group Nurses (n=l46) 6 ( 4.1 % ) 140 (95.9 % ) Patients (n=76) 10 (13.2 % ) 66 (86.8 % ) Corrected Chi-Square= 4.84, .e_ < .05, phi = .17 Nurs es were mor e likely th a n patients to see th e illness as an unjust, overw he l m ingly destructiv e enemy, and were also so m ewhat more likely to se e th em selves involved in treat m ent if they w ere dialysis pa t ient s.

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94 Further Analysis of Patients' Data A final set of analyses was originally intended to assess the re latio ns hip b e tw e en p a tients' glob a l p e rception s of their ill ne ss and treat me nt, on the one hand, and their ratings of the i m portance of th e 43 ite m s in the first p a rt of the questionnaire, on the oth e r. How ever, contrary to what was originally anticipated, very few patients saw t h e illness as an unjust enemy and/or felt helpless in treatment as sho w n in Table 3-12. Illness TABLE 3-12 Frequencies of Patients' Perception of Illness by Perception of Treatment Unjust Enemy Chance Event Helpless 5 5 Treatment Involved 7 58 Because of this, meaningful analysis of the relationship bet w een glo bal perceptions of the illness and treatment, on the one hand, and the ratings of the importance of the 43 items from the first part of the questionnaire, on the other, could not be carried out, even in a sug gestive fashion. Construction of Clinical Instruments After the preceding tedious sifting of the responses of our sub jects, the purpose of this section is to give an initial, coherent fo rm to the r e sults that m akes the m useful in the clinical setting

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95 Th r e e PA D S sc a le s (st a nding for 11 Pati e nt Adju s t men t to Dialysis Scale s 11 ) which are busic a lly checklists were con s tru cte d f r o m t h e re s ults. Th e es s e n ti a l pu r p ose of th ese sc a l e s is to a r t i cu l a t e differ e nt s e ts of crit e ria fo r good p a tient adjustm e nt to di a ly s is a s d e fined by variou s g r ou p s of subj e cts . In order to be inclu de d in a p a rticular scale, an ite m h a d to be perceiv e d as at least i m po r tant by at least 75 ~~ of the d e fin e d group. Three groups were d e fined: (l) nurses and patients com bined, (2) nurses, and (3) patients. The manner in which the G-Scale fo r the co m bined nurse-patient data was constructed will be described in d e t a il in the following section. The N-Scale and P-Scale were con st r uct e d in an analogous manner, using the appropriate data, as will be s e t forth in succeeding sections. T he G-Sc a le The G-Scale essentially represents a set of criteria which both nurses and patients substantially agreed (i.e., at least 75 % of both groups) are at least important for good patient adjustm e nt to dial ysis. It was drawn from the data presented in Tables 3-2 and 3-3 abo v e. The G-Scale consists of two columns of items: (l) one column containing items for which at least 75 % of both nurses and patients agr e ed that they are crucial for good adjust m ent, and (2) a much longer colu m n containing items for which at le a st 75 % of bo t h n u rses a n d patients agr e ed that they are at least i m portant. The "crucial" ite ms were d r awn fro m the first ro w second column of Table 3-2. The "impo r t a nt" ite ms were d r awn from the first two colu m ns of Table 3-3.

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96 Furth ermore th e colu mn of important ite ms in the G-Scale are differ entially no ted according to the level of agree men t of both groups con c er nin g th e it em. It ems fro m the "Con se nsu s colu m n of T ab le 3-3 which are not also pres e nt in th e first ro w s e cond column of Table 3-2 are marked with an asterisk (*) to design a te that at least 90 % of both nur ses and patients perceived these items as being at least im portant for good adjust me nt. Items with the asterisk are considered to be so me1<1ha t more important than the other items in the "Important" colu m n. Ite m s with 75-89 % agreement regarding their importance are not so marked. Raw scores can be calculated by summing the results fo r th e various groupings of items: a Total Crucial Score (TCS) of the n umbe r of "Crucial" items which are perceived as being character istic of a target patient; a Total Important Score (TIS) of the num b er of "Important" ite m s deemed characteristic of the patient; and a Total Score (T*S) of the number of asterisked items which the pa tient is perceived as manifesting. The high TCS for the G-Scale is 4, the high TIS is 21, and the high T*S is 6. A target patient's adjustm en t score can be given as a three-number co m bination: TCS/ TIS/T*S (e.g., 4/19/5 or 3/15/6). Since this is an initial construction of the G-Scale, no valid ity or reliability data are available, but must a\'1ait future experi m en tation. Furthe rm ore, items are numbered on the present forms of the G-Scale and other scales according to their number on the ques tionnaire. The final clinical form of the scales would not ha v e such numbers.

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97 PADS G-Scale Check those behaviors generally displayed by the patient. Patient's Name Tim e on Dialysis (yrs., mos.) -CRUCIAL __ (l) Understands diet __ (3) Understands fluids __ (6) Takes medications Date ------------IMPORTANT Diet and Fluids __ (2) Complies with diet __ (4) Complies with fluids __ (5) Does not abuse alcohol Medication __ (7) Complies with doctor's orders Hygiene __ (8) Good hygiene practices Treatment __ (9) Present for all treat ments __ (10) On time for all treatments _ (12) Interested in gaining know ledge of illness and treat ment (13) No psychological difficul ties with the machine Interaction with Staff __ (20) Mature interpersonal be havior with staff ( 21 ) Healthy Independence from staff (22) Free to discuss dialysis-related problems with staff (27) -Cooperates with staff

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G Sc a le co n tinu e d. 98 Inter a c t io n v ith Fa m J_J_y __ ( 3 1) H e a l t h y i ndepende n c e fro m famil y __ (32) Mature inter p ersonal behav ior with fa m ily __ (33) Free to discuss dialysis related proble m s with family Patient's Activities and View of Self TCS: (Righ = 4) ---T*S: __ (35) Accepts reality of disease __ (36) Continues with age-appropri a te tasks __ (38) Strives to establish mean ingful daily routine (39) Involved in outside activi ties __ (40) Perceives self as total per son _ (41) Not dwell on illness and treatment TIS: (high =6) --(high= 21) ---Staff Signature ________

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99 The N-Scale Th2 N-Scale represents a set of criteria for good patient adjust ment to dialy s is fro m nur ses point of vie v, It was dravm from Tables 3-4 and 3-5 in a manner analogous to the construction of the G-Scale, and contains the sa m e items as the G-Scale, arranged in a slightly different fashion. The high TCS for the N-Scale is 5, the high TIS is 20, and the high T*S is 6. No validity or reliability data for the N-Scale a reyet available. PADS N-Scale Check those behaviors generally dis p layed by the patient. Patient's Name Ti me on Di a 1 ys...,...i -s -(.---y_r_s_. -, _m_o_s_ ..-) -Date -------------CRUCIAL IMPORTANT Diet and Fluids __ (1) Understands diet __ (3) Understands fluids __ J4) Complies with fluids __ (2) Co mp lies 0ith diet (5) Does not abuse alcohol Medication (6) Takes medications (7) Co m plies with doctor's orders Hygiene (8) Good hygiene practices Treatment (9) Present for all treat ments _ (10) On time for all treatments __ (12) Interested in gaining know ledge of illness and treat ment (13) No psychological difficul ties with the machine

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N Scale continued. 100 Interaction with Staff _ (20) M a tu r e interp er sonal beh a ior w ith staff (21) Healthy independence from staff __ (22) Free to discuss dialysis related problems with staff __ (27) Cooperates with staff Interaction with Family __ (31) Healthy independence from from family __ (32) Mature interpersonal behav ior with family __ (33) Free to discuss dialysis related problems with family Patient=s Activities and View of Self TCS: --(high = 5) T*S: __ (35) Accepts reality of disease __ (36) Continues with age-approp riate tasks __ (38) Strives to establish mean ingful daily routine __ (39) Involved in outside activi ties __ (40) Perceives self as total person __ (41) Not d w ell on illness and treatment TIS: (high = 6) --(high= 20) -Staff Signatu r e:

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101 The P-Scale The P-Scale represents a set of criteria for good pati ent adjust ment to dialy sis fro m p a tient s point of vie 1. It v1as dr avm from Tabl es 3-8 and 3-9 in a manner analogous to the construction of the G Scale. It contains the same items as the Gand N-Scales, althou gh arran ged in different fashion, plus seven additional ite m s which pa tien t s substantially agreed are at least important for good patient adjustment to dialysis. The high TCS for the P-Scale is 8, the high TIS is 24, and the high T*S is 9. No validity or reliability data for th e P-Scale are yet available. PADS P-Scale Check those behaviors generally displ aye d by the patient. CRUCIAL Patient's Name Ti me on Di a 1 ys-i -s -(~y_r_s_. -, _m_o_s_. ~) -Date ------------IMPORTA NT Diet and Fluids (1) Understands diet (2) Complies with diet __ (3) Und er stands fluids __ (5) Does not abuse alcohol __ (4) Co m plies with fluids Medication __ (6) Takes medications __ (7) Complies with doctor's orders Hygiene __ (8) Good hygiene practices

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102 P-Scale continued. Treat me nt (9) Pre sen t for all tr e at* m e nts (10) On ti me for all treat ments __ (11) No t overly an x ious about treatm e nt (12) Inte r ested in ga1n1ng know ledge of illness and treat ment _ (13) No psychological difficul ties with the machine _ (16) Participates as much as possible in treatment Interaction with Staff (22) Free to discuss dial* ysis-related problems with staff (20) Mature interpersonal behav ior with staff ( 21 ) Healthy independence from staff (23) Questions medical and nurs-ing charts and regimens -(25) Does not exhibit inappropriate anger towards staff (27) Cooperates with staff -(28) Does not manipulate staff for addition a l attention __ (29) Exhibits friendly, pleasant personality Interaction with Fa m ily __ (31) Healthy independence from family (32) Mature interpersonal behav ior with fa m ily __ (33) Free to discuss dialysis related problems with family

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103 P-Scale continu e d. Patient's Activities and Vie w of Self __ (35) Accept s reality of disease TCS: (high= 8) --T*S: _ (36) Continues with ag e -appropri ate tasks __ (37) Seldom depressed _ (38) Strives to establish mean ingful daily routine __ (39) Involved in outside activi ties __ (40) Perceives self as a total person __ (41) Not dwell on illness and treatment TIS: ---(high= 24) (high= 9) ---Staff Signature:

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CHAPTER IV DISCUSSION Given the extremity of the dialysis situation, and the multiple layers of emotionally-charged processes taking place within and between patients and nurses, it is a Herculean task for anyone to consistently follow a course of action that is optimal for helping patients make a gond adjustment to life on dialysis. But such is the professional task of the dialysis nurse. It was in the light of this task that the two fold purpose of this study was conceived. The first purpose of the study was to uncover the working concepts of good adjustment to dialysis with which nurses and patients operate. Previous studies had suggested that there was marked disagreement among dialysis medical personnel concerning the criteria for good adjustment (for example, Czaczkes & De-Naur, 1978; De-Naur et al., 1972). Further more, our review of the literature found no study that reported any in vestigation of the criteria for adjustment which patients apply to themselves. In such a situation where both staff and patients may be unclear as to many of the specific goals of comprehensive patient care, the door is wide open for misunderstandings and mixed-signals, and for the possibility that in many ways the two parties are working at cross purposes. Such a situation could be partially responsible for some of the difficulties in patients' adjustment and in nurse-patient 104

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105 interactions. The exploratory phase of the present study broke down the concept of adjustment into 43 component items and identified those items considered by nurses and/or patients to be important, those items considered to be unimportant, and those items about which there was disagreement concerning their importance for adjustment. The re sults of this phase of the study can assist nurses in at least two ways to fulfill their difficult task. First, the results point out ways in which nurses disagree among themselves concerning the criteria for good adjustment and may, therefore, be giving patients mixed sig n~ls regarding the kind of behavior that is expected of them in order to make a good adjustment to dialysis. Secondly, the results can pro vide a picture of how patients differ from nurses in their perceptions of the important components of good adjustment. These differences may occasionally give rise to conflict between nurses and patients due to the fact that one group may insist that a certain behavior is important while the other does not. Both types of disagreement--disagreement among nurses, and disagreement between nurses and patients--require attention and understanding in order to defuse tensions and enable medical personnel to deliver the highest quality of patient care. The second purpose of this study was to further assist nurses in fulfilling their task by providing them with instruments with which they can nonintrusively assess patients' adjustment to dialysis. The exploratory phase of the study identified many items which one or both gro 1 Jps substantially agreed were important for good adjustment. These items served as the basis for a set of instruments which consist

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106 essentially of codes of expected behaviors for patients. In the 20 years since hemodialysis became a viable mode of treatment for chronic renal failure, medical personnel have been aware of the tremendous dif ficulties patients face in trying to cope with "life on the machine." However, there has not been a systematic means available for assessing how well patients are coping with, or adjusting to, the situation. Standard psychological tests do not specifically take into account the realities of dialysis treatment and may, therefore, be misleading in pointing out weaknesses in a patient's adjustment. Furthermore, they may fail to suggest specific areas that may require therapeutic inter vention. Most dialysis patients are not candidates for psychotherapy. Although some of the difficulties many patients experience with dial ysis may in large part be due to long-standing characterological pat tern~, the focus for intervention is often quite specific (for example, nonco m pliance with the treatment regimen, or inappropriate hostile outbursts towards staff). What has been needed, therefore, is a means of assessment which compares an individual patient to criteria spe cifically established for the dialysis situation. Dialysis represents life "out on a limb," life in an extreme situation. It is possible that good adjustment to dialysis requires somewhat different attitudes and behaviors than good adjustment to life in general. Certain obses sive-co :n pu1sive traits or massive employment of denial or limited re gression may be highly adaptive in the long-run for dialysis patients, whereas such traits or defenses may be maladaptive and overly constric tive for the mere "normal" population.

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l 07 In offering an alternative to standard psychological tests, this study sought to steer a course between two approaches that have been taken previously. On the one hand, Brown et al. 's (1974) ultimate definition of a patient's adjustment was based on their "subjective judgem e nt of how well the patient has found purpose and value in his life on dialysis" (p. 168). On the other hand, Strauch-Rahauser et al. (1977) ass e ssed 30 overt coping behaviors in a specific effort to find signs of psychological disturbance in dialysis patients. In stead of seeking to provide a means to hunt for psychological disturb ance per se, the approach of the present study has been to delineate attitudes, behaviors and behavioral patterns that are considered adap tiv e for patients by a substantial majority of dialysis-involved peo ple. Whether the absence of any of these elements in a particular patient is a sign of psychological disturbance is an interesting ques tion, but outside the particular focus of our investigation. Given its two-fold purpose, the generalizability of the results of this study rests on the representativeness of our sample of sub jects. This issue v-,as basically addressed in Chapter II, "Method". The sample of nurses is considered to be adequately representative since our sample was both relatively large (n = 164) and drawn from ov e r 25 different dialysis units. A potential weakness in the sam ple is that all the respondents were volunteers. This may imply th a t th e y are well-motivated to give quality patient care; but whether this reflects the attitude of dialysis nurses in general is not kno w n. Ho w ever, for purposes of establishing criteria for good patient adjust m ent, it seems reason a ble to use criteria generated by

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108 profes s ionals who are invested in d e liv e ring qu a lity patient care. Furt h e r more, a wide range of dialysis nursin g experience was repre sent e d in our sample. Neophytes accoun te d fo r only 19 % of the sample, while w e ll-seasoned vete r ans with over five years of exp e rience with dialysis co m prised 29 % of our sample. Our sample of patients may be a w e a k ness in the generalizability of the results. It see m s reasonable to suspect that age, sex, class, and ethnic group would have some influence on patients' criteria for goo d adjust m ent, particularly with regard to the various aspects of the s i ck role. We do not have such de m og r aphic information and, t her efo r e, we do not know if, or in that way, our sample may be un representative of the entire population of dialysis patients. How eve r since all respondents were volunteers, it seems reasonable to s~g ge st that our respond e nts are the kind of patients who, in general, are putting forth an effort to make a good adjustment to dialysis. Our sample presumably contains few, if any, patients who have given up and are just barely "getting by." Therefore, the profile of good adjustment generated by our sample probably represents the perspective of p a tients who feel that active involve m ent in treatment is the pre fe r red m ode of adjustm e nt rather th a n passive endurance of the situ ation. Indeed, the vast majority of the sa m ple indicated that they felt there were m a ny things they could do in treat me nt that would make a r e al difference for them. If our sa m ple of patients is actively involved in ma king a good adjus tme nt to dialysis, and our sa m ple of nurses is invested in

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109 helping the m make that good adjustment, then the sets of criteria de veloped from the responses of these subjects are probably as inclusive as any sets that would be developed from s amp les of co m parable size. It is ha r d to imagine less-motivated nurses and patients agreeing that there additional ite m s that were clinically important for good adjust m ent to dialysis. The following sections of this chapter will discuss the high lights of the results from the questionnaire-survey and their impli cations for medical personnel 1 s delivery of quality patient care. Appendix D summarizes many of these results by listing for each item the status it was given by our sample of nurses and patients. A fur ther se c tion of this chapter will discuss the use and significance of t h e clinical instru m ents constructed in this study, while a final sec tion will consider directions for future research. Co m parison of Nurses and Patients Our sample of nurses and our sample of patients differed to a statistically significant degree in their pattern of responses to 38 of the 43 it e ms. The diffe r ences were statistically large, with values g e nerally less than .0001. If it is true that our sample of patients was co m posed of compliant-types v ho seek to follow courses laid dm\ln by the me dical staff, then our results are even more dra ma t ic. It appe a rs that much of the difference is due to the general tendency of pati e nts to rate an item as crucial more often than nurses did. For 25 of the 43 items, nurses and patients differed by

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110 a t l eas t 25 perc e nt age po i nts in the pro p ortio n of t he ir groups that ra ted th e ite m as cru c ial, with patien t s al wa y s h a ving the higher pro porti on This g e n era l re s pon s e-diff e r ence i s t1 ar d t o acco un t fo r It is difficult to un de rsta n d how pati e nt s as a g r o u p wo ul d h a ve displayed a r esp on s e-bias th a t is an artifact of the qu e stion n ai re wh ile nurses as a gr o up did not Such an interpretation do e s not se em to be rea son a ble. Furth e rmore, it is difficult to understand ho w a social d e si r ability factor could b e operating. First, resp o nses are anon y m ous. Secondly, it is by no means apparent that rating ite m s as cr u c i al for good adjustment is more socially desirable than rating t hem as si m ply important. Perh a ps part of the reason for this response-difference lies in a mo r e substantive response-bias: namely, patients have a fearful a wa r eness of th e fragility of their condition and, therefore, per ceive m any attitud e s and behaviors as being absolutely neces s ary in ord er fo r them to survive. Patients may have a general feeling that they must be on top of everything. They may put undue pressure on themselves by insisting that instead of being depressed they should e x hibit a frie n dly, pleasant personality, that they should practice goo d hy g i e ne al way s be on time, act m a ture and independent, sh ow int e r es t i n beco m ing kno w ledgeable about their situation, and even a c t brave with reg ar d to needle sticks. They may be carrying an ide al s e lf-image th a t is unattainable and therefore lead s to chronic f ru s tr ation and a sense of being a w e ak and vuln e rable person.

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111 Particularly striking is the magnitude of the difference between nurses' and patients' ratings of the follo w ing items: (8) practices good hygiene (10) on tim e for all treatments (29) exhibits friendly, pleasant personality In all three cases there was a difference of between 50-60 percentage points (after rounding), with a higher proportion of patients rating the items as cruci a 1 for good adjustment. Items #8 and # 10 have an obsessive-co m pulsive flavor to them, while item # 29 represents "put ting a good face on 11 one's situation. Congruent with this last item is t h e finding that on item #37 ("Patient is seldom depressed 11 ) 48 % of the patients rated it as crucial whereas only 6.7 % of nurses did, a difference of over 41 percentage points. Against the fearful aware ness o f the fragility of their condition, patients may be defending themselves by using denial and/or reaction formation, trying to act as though they are taking their illness and treatment in stride. Al though from an outsider's point of view, these results may imply a somewhat pathological functioning on the part of patients, they may also represent what for patients is a highly adaptive mode of func tioning that helps them survive both physically and emotionally. Many patients feel they must act friendly, pleasant and compliant in order to ensure they receive all the caring and help they possibly can from medic a l personnel. Many patients fear and have experienced how depres sion can repel care-givers.

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112 Given the wide discr epan ci e s bet wee n t he re sp onse pattern s of nurses and p a tients, it is small w ond e r th a t Table 3-2 is virtually e mpt y indicatfo g that th e tv1 0 group s diff ered widely in th e extent to which they agreed on th e level of i mportance of each of the ite m s. Ho we ver, we noted there w e re five it ems ( # 4, 5, 7, 35, 40) that were within five percentage points of meeting the criteria for inclusion in the table. This means that nurses and patients ca me close to h a ing the sa m e level of agreement on the level of importance of the directly medical items: namely, items # 1-7 and # 9. For virtually all the rest of the ite m s, their level of agreement differed. The more clinically useful table of results is Table 3-3, which sho ws that the two groups at least substantially agreed that 25 of the 43 it ems we re at least important for good adjustment, with another eight ite ms having a marginal level of agreement concerning their clinical importance. For the aspects of adjustment which these items represent, it appears that nurses and patients are working towards the sa m e goals, although patients may be doing so a little more in tensely. There were no items which nurses thought were clinically important while patients did not perceive them to be so. This is encouraging to the extent that it indicates that medical personnel do not h a ve to struggle to convince patients that certain attitudes or behaviors are i mp ort an t for adjusting well to life on dialysis. In consid eri ng the items not included in Table 3 ~ 3, we found that nine of th em were ite m s about which nurses substantially disagreed re garding th e ir clinical importance while patients substantially

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113 disagr e ed about three of them In looking ov e r these results, there appears to be two areas where th e re could be significant conflict due to th e absence of an agreed-upon cod e of con d uct. First, patients substantially agreed that it is important for them to question medi cal and nursing charts and regimens (item # 23) while nurses substan tially disagreed on this item's level of i m portance. Nurses may feel patients a r e intruding into their do m ain if patients insist they need to question the charts and regimens. Secondly, because both groups substantially disagreed on how important self-care is during treat ment (item # 19), there is much room for misunderstanding. Some nurses may insist it is important for patients to do most of the self-care, while many patients may not be so motivated. On the other hand, a motivated patient may "take over" the nurse's role if he/she insists on d o ing everything for hi m self/herself. The rest of the items concerning which the two groups differed may indicated areas where nurses need to be careful not to undermine patients' motivations and defenses, particularly in light of the fact that several writers have noted how nurses can interact with patients in ways that are unfavorable for patients' progress and rehabilitation (for example, Foster & McKegney, 1977-1978; Glassman & Siegel, 1970; Halper, 1971; McKegney & Lange, 1971; Short & v/ilson, 1969). As sug gested above, patients appear to have an ideal self-image that in clu de s not b e ing depressed and anxious and hostile, but being friendly and pleasant, clean, on ti m e, brave, and inv o lv e d with treatment. On

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114 the one hand, nurses may be tempted to encourage patients to ease u~, to get in touch with their feelings of desperation, and so forth. On the other hand, nurses may be tempted to encourage the patients' at tempt to fully actualize all the elements of their ideal self-image. Both temptations should probably be avoided. It is interesting to note how vigorously both nurses and patients 11 rejected 11 item #17 ( 11 Patient expresses interest in home dialysis training 11 ). As noted in the review of the literature, patients on ho m e dialysis are generally perceived as being better adjusted than patients who dialyze at dialysis centers, and one might have expected that expressing an interest in home dialysis training would indicate that a patient is motivated and well-adjusted to life on dialysis. However, a majority of our nurses and patients rated the item as ir relevant for good adjustment. It may mean that even though expressing interest in home dialysis training does indicate good adjustment, it is not an important or necessary component of good adjustment. A patient can be well-adjusted without seeking home dialysis training. There was one other item which at least one-third of both nurses and patients rated as being irrelevant for good adjustment: namely, ite m # 14 ( 11 Patient gives serious thought to having a kidney trans plant11). It seems reasonable to expect this item to be rated as ir relevant since kidney transplantation represents an alternative to dialysis and, therefore, would seem to have little to do with adjust ing to dialysis. However, nearly a third of the patients (28.9 % ) in d~cated that seriously considering kidney transplantation is 11 crucial,

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115 ab so lutely nece ss a r y fo r good adju s t ment" to dialysi s Perhaps this a pp2. rent contr ad ic t ion in p a tients' rating s of this it em reflects th e t w o-ed g ed n a t ure of th e it em On th e on e h a nd, k id ney tran sp l an tatio n is often a vi ab l e escape fro m the ch r onic ne e d fo r dialysis. Perh a ps th ose patients who rated th e item as crucial p erc eive chronic he m di a l ysi s as so aversive that the only viabl e mode of adju s t me nt is to e s c ape it al t o g ether through kidney transplantation On the oth e r h a nd, kidney tran s plantation is often unsuccessful since the body t e nds t o reject allografts of this kind. Even successful transplants g enera lly require large doses of im m unosuppressive drugs that render t he body v u lnerable to many viruses and infections. Perhaps those p a tie nt s who rated the item as irrelevant have watched fellow-patients under go tra n splantation only to return to dialysis weeks or months la ter bit ter ly dis appo inted. Perhaps their feeling is that it is be s t to accept chronic he mo dialysis as their lot in life and to invest their en erg y in adjusting to it. The two-edged nature of this item also app ear s to be reflected in nurses' responses. Although only 6.1 % thought serious consideration of kidney transplantation was crucial for g oo d adjust me nt, 36.8 % sa w it as being important. There were t w o oth e r items in which nurses' and patients' respon ses sho 1 1 1e d th e sa me conflicting pattern: ite m # 10 ("Patient does most of t h e s elf -ca re during tre a tment") and ite m # 42 ("Patient seeks con t a ct wit h other dialy s is patie n ts outside of th e dialysis center"). Th e r esponses to ite m # 19 may reflect the d epende nce-ind e pende n ce con flict n oted by several authors (for exa mp le, Abram, 1968; Freyb e rger,

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116 1973; Halper, 1971) as being perhaps the most important psychological stressor for dialysis patients. The 38.6 % of the patient sample who rated the item as irrelevant may be patients who feel very d epe nd e nt on the staff to take care of them, while the 24.3 % who rated the item as crucial (with an additional 17.1 % who rated the ite m as important) are patients who insist on maintaining as much independence as possi ble. The conflict within individual patients may be reflected in the fact that even though a large proportion of the patients thought it was irrelevant whether or not they did most of their self-care during treat m ent, only 13.2 % of the patients indicated in the second part of the questionnaire that they tend to feel pretty helpless in the face of their illness and basically have to let others do whatever is nec essary for their treatment. In other words, many of the same patients who indicated that it is irrelevant whether or not they do their own self-care (which may reflect dependency) also indicated that they feel there are many things they can do to help out with their treatment in ways that will make a real difference for them (which may reflect their need for independence). Furthermore, a majority of patients indicated that healthy independence from both staff and fa m ily was crucial for good adjustment, and nearly 80 % thought it was at least important. Just as we suggested that the item on kidney transplantation may evoke two radically different responses, so also the conflicting pat tern of responses to item # 42 (''Patient seeks contact with other pa tients outside of the dialysis center") may indicate that this item

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117 is t w o-sided as well. The 44.2 % of patients (and 28.8 % of nurses) who rated this it e m as irrelev a nt may feel that p a tients spend enough time in treatm e nt and do not n e ed furth e r contact with patients outside; that, in fact, it would only be depressing to be reminded of dialysis when interacting with patients outside. But the 28.6 % of patients who rated the item as crucial (as well as the 13 % of patients and 35.6% of nurses who rated it as important) may be responding to the feeling that life is so radically different "on the machine" that only other dialysis patients can relate to them and understand their experience. Therefore, they feel it is important for them to seek contact with other dialysis patients outside of the center. This may suggest that many patients would appreciate having their center offer an opportun ity for a support group of patients that meets regularly, while a large number of patients would decidedly reject such an offer. Finally in our comparison of the responses of nurses and patients, we turn to their global perceptions of the personal meaning of the illness and treatment. Pritchard (1979) has suggested that the mean ing that an illness has for a patient constitutes the intervening variable between the givens of a situation and the patient's responses to it. The two forced-choice questions in the second part of the questionnaire were meant to tap dimensions of meaning in the percep tions of nurses and patients. If nurses had differed substantially from patients in their perceptions of the illness and treatment, it would have offered grounds for speculating that such differences in perception may play some part in the differences between nurses and

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118 patients in their ratings of the importance of the items. However, even though the two groups differed to a statistically significant extent in their perception s of the personal m e aning of the illness and treatment, the differences were so small as to be basically mean ingless in a substantive sense. Evidently, these differences cannot be used to help explain the differences between groups in their rat ings of the importance of the items. However, given this caveat, it is surprising to find that nurses were the ones who were more likely to perceive chronic renal failure "as an unjust and rather overwhelmingly destructive enemy. 11 What may be more surprising in the light of the severe stresses of dialysis is that so few patients perceived the illness as an overwhelmingly des tructive enen~. Perhaps this reflects the defensive use of denial or intellectualization. Patients may insist that their illness is a challenging chance event because such a perception renders the illness more manageable, whereas perceiving the illness as an overwhelmingly destructive enemy would clothe it with too much pov,er and lead them to despair. On the other hand, it may be that the inside view of life on dialysis is not quite so bad as it appears from the outside, and patients choose to cognitively structure their situation in a manner that gives them so me emotional leverage in their response. In considering patients' perception of their treatment, we found that even though patients were statistically more likely than nurses to feel basically helpless in their treatment, only 13.2 % of the pa tients indicated this was true for them. Patients present themselves

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119 as being ready to do what they can to help themselves in their treat ment. The combination of perceptions that was characteristic of most patients w a s to perceive their illness as a ch a llenging chance event and to feel involved in their treatment. This result is congruent with G o odey and Kelly's (1967) finding that even though their sample of patients were very frank regarding the difficulty of their situa tion, they had also learned to accept their continuing treatment and were optimistic about becoming adjusted to it as time went on. The question still remains, however, as to how much denial and intellect ualization is used by patients in coping with their situation, and how a d aptive such defenses are. In considering nurses' perceptions of the treatment, we found that wh e reas nearly a third of the nurses perceived the illness as an over w hel m ingly destructive enemy, virtually all the nurses felt they would be as involved as possible in treatment if they were dial ysis patients. The virtual unanimity of this response is somewhat tempered, however, by their pattern of responses to item #21 ("Pa tient demonstrates a healthy independence from the staff"). A quar ter of the nurses felt that this item was either irrelevant or only somewhat important for good adjustment. Perhaps this reflects the ambivalence of nurses regarding patients' independence from them that has been noted by other authors (for e x ample, De-Naur & Czacz kes, 196 8 ). On the one hand, if they were patients they would all want to be as indepen d ent as possible in their treat m ent. But, on the other hand, when it comes to their patients being independent

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120 from the m many nurses b a lk. However, it m a y be inferring a little too much to sug g est that nurses' rating item # 21 as irrelevant or as so mew h a t important indic a tes they do not want th e ir patients to be independent. Further Comments on Nurses' Responses Oe-Nour et al. (1972) reported that whereas they had expected a high level of agreement among dialysis medical personnel that would reflect ''text book knowledge" of the criteria of good adjustment, they instead found that the level of agreement was usually not very high. Our results are congruent with this finding as indicated by Table 3-4. Generally speaking, nurses at least tended to agree on the lev e l of i m portance of only the directly medical items (items #l-7, and # 9), while they varied in their ratings of the importance of most of the rest of the items. This result is partly an artifact of the cut-off points for inclusion or exclusion that were employed in this study. The rather weak showing in Table 3-4 is some w hat off-set by the results depicted in Table 3-5 which indicate that nurses substan tially agreed on the clinical importance of 25 of the 43 items. How ever, based on the results of this study, it may be of some importance for nursing personnel to come to a more united understanding concerning t h e clinical i m porta n ce of the nine items about which they substantial ly disagreed, and the eight items about which they only tended to agree as to their i m portance. After all, patients substantially agreed that many of these sa m e items are clinically important for good adjustment, and it could be of so m e importance for nurses to have a com m on pro fessional stance towards these aspects of adjustment

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121 When nurses were divid e d according to the a m ount of e x perience they have had with dialysis, a few noteworthy results were obtained. The ma in purpose in making this division was to co m pare the response s of neophytes with those of survivors. We noted there were three items in which neophytes and survivors differed by more than 19 per centage points (ite m s #2, 5 and 9) in the proportions of their groups who rated the items as crucial for good adjustment. In all three cases, fe w er seasoned veterans (survivors) rated the items as crucial. The character of these items is rather surprising. All of them are "hard-core" medical items in that they have direct bearing on the patient's medical condition: (2) co m plies with dietary restrictions (5) does not abuse alcohol or drugs (9) is pres e nt for all treatments Nurses who have been involved with dialysis patients for more than five years have had ample opportunity to see and experience the im pact of chronic renal failure and dialysis on the lives of their pa tients. For many of these veteran nurses, the criteria for good ad justment may have grown somewhat more relaxed. Given the stresses of their patients' situation, they are less likely to insist that pati i: n t s must co m ply with the dietary restrictions, must refrain f r o m ab u sing alcohol, and must be present at all scheduled treat ments. On the other hand, it is interesting to note two items that sur vivo r s were much more likely than neophytes to rate as being at least important for good adju s tm e n t :

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122 (25) not e x hibit inappropriate hostility to war ds staff (28) not manipulate staff for additional attention It is as though after fiv e or more ye ars of e xp e rience with dialysis p a tients, nurses are less willing to countenance ina pp ropriate hostil ity and d ema nds from them. It may be that more of them come to see these it em s as important because they have experienced the negative impact of patients' hostility and dernandingness on the ability and willingness of nurses to give patients quality care. However, it should be pointed out that these results are based on cross-sectional, not longitudinal, data. It may be that our sample of survivors have always felt the way their responses indicate and have not changed over the years. If such were the case, these results would suggest the possibility of a cohort effect rather than an effect due to amount of experience. Further Comments on Patients' Responses Turning to the data from our sample of patients, it is worth not ing the extent to which they agreed on the level of importance of the items. Com p aring Table 3-8 with Table 3-4, we see that patients at least tended to agree on the level of importance of twice as many of the items as did nurses (20 items and 10 items, respectively). At first glance, this may appear surprising since nursing personnel are supposed to be experts in caring for dialysis patients and should know what is important for good adjustment. Ho we ver, t w o observations miti gate against this interpretation. First, nurses are primarily trained in the medical aspects of dialysis. They are not trained to be experts

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123 on all the nuances of life on dialysis. Therefore, it is not so sur prising that they do not agree on the level of importance of any but the directly medical items. Patients, on the other hand, live through all aspects of life on dialysis and have a com mo n full-orbed experience \vi th its nuances. Therefore, their \vi der range of agreement is not so surprising. Secondly, the inclusion of 20 items in Table 3-8 is partially a result of the fact that patients had a general tendency to more often rate an item as crucial for good adjustment than did nur ses. Although this response-bias is felt to be substantive and not merely an artifact of patients' stereotyped behavior in completing questionnaires, the nu m ber of items which patients at least tended to agree were "crucial, absolutely necessary for good adjustment" appears to be inordinate, for whatever reason. Therefore, the inclusion of 20 ite m s in the "crucial II row of Table 3-8 may be artifically large. It stretches the credulity of the 11 outsider 11 to insist that exhibit ing a friendly, pleasant personality is "absolutely necessary for good adjustment." However, as was suggested above, patients (the real "in siders") may find it highly adaptive to insist on being friendly and pleasant in order to receive maximum care. In light of several studies which documented the widespread pre sence of depression among dialysis patients (for exa m ple, Czacakes & De -N our, 1978; Lefebvre et al., 1972), it is remarkable that nearly half of our sample of patients thought it was crucial to seldom be depressed. Fully three-quarters of the sa m ple said it was at least important for good adjuste men t. It could be that either our patients

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124 have a virtually impossible goal, or they are denying how depressed they really are. Both could be tru e If in fact th e y are actually d e pre sse d and are d en yi ng it, it m a y b e th a t such d e nial is the m ost effectiv e adaptation, given the realities of th e situation. Perhaps the denial is important for them b e cause oth e rwise--if they acknow ledg e d ho w depressed they are--they would be overwhel m ed Patients may be insisting that they cannot afford to let their situation get them do w n, eveh though it does. Too much is at stake. Pat i ents' responses regarding compliance with dietary and fluid restriction are interesting in light of several studies that reported high rates of poor compliance, even severe abuse (for example, De-Nour & Czac zk es, 1972; Procci, 1978). Our data indicate that patients generally b e lieve co m pliance is crucial or at least i m portant for good adjust m ent. The question arises that if patients believe compliance is i m portant or crucial, why is there such apparently widespread non compliance. Our data do not add anything to the suggestions already offered by other authors reported in the review of the literature. It may be that given the high cost of consistent compliance, many patients are not w illing to comply, whatever their beliefs concerning its im portance for good adjustment. However, it must be re m embered that our sample consisted of volunteers who complied with the request to com plete a questio n naire. Such patients may be generally compliant, in cluding co m pliant with the dietary and fluid re s trictions, and, there fore, may not be representative of the entire population of dialysis patients.

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125 When patients were divid e d acco r ding to the amount of experience they have had with dialysis, our sa mp les of neophytes and survivors were so small as to provid e results that are only su ggest ive at best. Given this caution, it is still note w orthy that a much greater pro portion of survivors than neophytes saw healthy independence from staff and not exaggerating complaints as being crucial for good ad just men t. In fact, there were 11 items concerning v-1hich the two groups differed by at least 20 percentage points in rating the item as crucial, with survivors always having the higher percentage. The general sense one gets from these results is that survivors are more likely to see interpersonal relationships both at home and with staff as being crucial foci for good adjustnent. It is as though the re sults sugge st that once a patient adjusts to the regimen of dialysis itself--which o ft en takes at least a year--he/she needs to get his/ her interpersonal relationships in order. It is worth noting in this context that no survivors indicated that mature interpersonal behavior with one's family (item # 32) was irrelevant or only somewhat import ant, whereas a quarter of the neophytes indicated it was so. A final observation to be made from the results from patients grouped by experience is that while two-thirds of the neophytes indi cated that practicing good hygiene was crucial for good adjustment, 92.9 ~ ~ of the survivors felt that it was crucial. Evidently, survivors are well aware of the danger of infection at the shunt site, and, therefore, believe it is good to be very careful when it comes to keeping clean. Such obsessive-co m pulsive traits may have helped them survive on dialysis as long as they have.

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126 As was tru e for the d a ta fro m nurses group e d by e x perience, so it needs to be borne in mind that our data fro m patients is also cross section a l, n o t longitu d in a l. We do not know whe th er p at ients' p er sp e tive s on adjustment change over time, or whether our sample of surviv ors al wa ys thought the sa m e way as their respon ses to the questionnaire i ndi ca te. We have already m e ntioned above our surprise that so fe~ , patients perceived their i 11 ness as an overwhel m ingly destructive enemy or per ceived the m selves as basically helpless in their treatment. In the light of several studies which indicated that dialysis patients tend to have an external locus of control (for example, Foster et al., 1973; Goldstein & Reznikoff, 1971; Kilpatrick et al., 1972; Poll & Oe-Nour, 1980; Todd & Kopel, 1977; Wilson et al., 1974), our results are even more surprising since 86.8 % of our patients tended to feel that they can do many things to help out in their treatment in ways that ~vill make a real difference for them. This sentiment appears to be char acteristic of an internal locus of control Two explanations fer this apparent anomaly can be suggested. First, it may be that most of the patients in our sample have an inte r nal locus of control. Secondly, the instru m ent used to m e asure locus of control is general, and is not specific to the dialysis situation. Locus of control is not an either-or characteristic, and m a ny dialysis patients who are labelled as having an external locus of control are only so m ewhat more extern a lly than internally controlled. It could be that when queried specifically about their perception of their role in treatment, dial ysis patients tend to feel that in such a situation they can exercise some d e gree of control.

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127 The Scales The scales developed in this study serve two purposes. First, they are primarily meant to be of service to dialysis medical person nel by offering them a brief, simple, nonintrusive way to assess how well their patients are adjusting to life on dialysis. Secondly, they also serve the purpose of pulling together into a coherent form many of the pieces of data obtained through the questionnaire-survey. Inclusion or exclusion in the scales hinged on the criteria em ployed for assessing level of agreement within a defined group. Cut off points were necessary, and the ones employed in this study were ad:nittedly arbitrary. Hm-;ever, it was also hoped that they were in tuitively meaningful. The rationale behind these criteria was to ex clude items which could not elicit strong consensus regarding their importance for adJustment. There were many items which were evidently considered of marginal importance; namely, those items about which groups could only tend to agree regarding their importance. These items deserve notice and should perhaps be the object of further eval uation. Although it can be argued that our criteria should be lowered somewhat in order to include more items in the scales, the criteria that were employed assure us that the items which are included are definitely felt to be important by our groups. The ramification of this feature is that in using these scales, medical staff-persons can be sure they are standing on solid ground that has been staked out by professional and patient consensus.

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12 8 In co m p a ring the three scales which were co ns truct ed in this study, t wo observations should be noted. First, the G-Scale and the N-Scale cont a in th e sa me it ems arrange d in vi rtua lly the sam e fashio n. Ther ef ore, th e G-Scale is essentially sup erf luou s We h ad anticipated that the G Scale would be the shortest scale, and that both of the other scale s would contain additional it em s. However, the results indicate that it was largely due to the disagre eme nt a m ong nurses' responses th at items were excluded from the G-Scale. A second obser vation regarding the scales is that the seven ite m s included in the P-Scale that were not included in the N-Scale have one of two basic cha racter istics. Either they involve "putting a good face" on their situation (items # 11, 29 and 37), or they involve being helpful and n onadver sarial when interacting with nurses (ite m s # 16, 23, 25 and 23). The scales are meant to be generalized checklists which medical personn e l who have not been psychiatrically trained can employ in assessing patients' adjustment specifically to life on dialysis. The checklists do not give a fine-tuned picture of adjustment, and even though they yield scores their primary purpose is to alert medical personnel to specific areas that may require therapeutic intervention. "Crucial" items which a particular patient fails to display may re qui re imrnedi ate intervention, while II Important" ite m s which the pa ti e nt fails to display may require careful monitoring in order to determine if intervention is necessary. Several of the items are rather vague and general (for example, item # 39 "Patient is involved

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129 in outside activities"; or item # 40, "Patient perceives self as a total person"). However, the point is that if an evaluator cannot check-off that kind of an item for a particular patient, th e n the staff h a s im p ortant data to use in developing a co m prehen s ive treat ment plan for the patient. It is not up to nurses to explore the nuances of a patient's adjustment. They only need to do enough as sessment to make a d~cision to refer or not to refer a patient to a liason psychiatrist or psychologist. The scores from these scales do not have cut-offs for labelling a patient as well-adjusted or poorly-adjusted. In fact, they do not actually measure adj;_ist m ent in any strict sense. These scales are analogous to the pre-flight checklists used by pilots who are not concerned with any pre-flight score of their aircraft. Rather, they are interested in checking the functioning of their aircraf t and if they cannot check-off certain items, they decide whether they can still fly or whether the aircraft requires immediate corrective main tenance. Unlike a pilot's checklist, however, our scales require some subjective evaluation and, therefore, their inter-rater reliability may be questionable. Different nurses may assess the same patient diffe r ently. Furthermore, use-reuse reliability may be suspect, alt h ough it is expected that in many cases, the assessment of a pa tient will chang e over time due to the fact that the patient changes. However, the usefulness of these scales is not necessarily vitiated by these concerns for two reasons. First, the directly medical items

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130 hdve o b jective crit er ia that are univ ersa lly ackn m.; l edged by dialysis per s onn e l and are, th er efore, quite reliable. Secondly, an item's pr e s ence on the sc a le alert s st a ff t o evalu ate that aspect of th e pa tient's adjust me nt, and serv es its purpo se if it pro mp t s discu s sion in t he staff's treatment-planning meetings v 1 hether or not the staff can a gr ee the patient does or does not display that particular atti tu de or behavior. We suggest nurses use both the N-Scale and the P-Scale. While the N-Scale contains nurses' ovm criteria for adjust ment the P-Scale adds the dimension of enabling nurses to assess patients in accord ance with patients' o w n set of criteria. In order to make their in terac t io n s with patients as helpful as possible, it is important that nu rses understand the adjustment goals towards which most of theit pa t i en ts believe they should be working. Directions for Future Research This study was part of an on-going project that is studying ad justment to dialysis. Our data provide information on the level of consensus a m ong nurses and patients regarding the importance of vari ous aspects of adjustment. The scales which were constructed in this stu d y are empirically-based and contain ite m s which meet rather string ent criteria for inclusion. Future research should pursue the follo w ing directions. (1) More survey-work needs to b e done with the questionnaire, esp e cially among dialysis p a tients. Efforts should be made to obtain the r espo nses of a more represent ativ e sa mp le of patients. Then, the

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131 influence of sex, age, class and ethnic group on criteria of adjust ment can be evaluated. Also, further work on the influence of level of motivation should be done since we could only infer that our re sults w e re probably from patients who are well-motivated. (2) A longitudinal study should be undertaken in order to in vestigate if, and in what ways, nurses and patients change their ideas concerning what constitutes good adjustment as a result of increased experience with it. (3) Inter-rater reliability of the scales should be evaluated. (4) Some of the more general items on the questionnaire should be operationalized in order to make their specific meanings more di rectly observable. This would help make for a more objective assess ment using the scales. (5) The effect of timing on patients' responses in the question naire should be investigated to see if completing it before, during or after being dialyzed makes a significant difference in their per ceptions of what is important for good adjustment. (6) Finally, an effort was made in the course of this study to assess the impact of patients' global perceptions of the meaning of the illness and treatment on their perceptions of what is important for good adjustment. This effort was thwarted by the fact that very few patients perceived the illness as an overwhelmingly destructive enew.y or perceived themselves as being helpless in their treatment. On the one hand, this would suggest that the original effort was ill placed since patients do not differ much in their global perceptions

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132 of th e illness and treat m ent. On the other hand, it is very possible that t he only kind of p e ople who would volunteer to co m plete the ques tion n aire are precis e ly the kind of people who are actively involved in t r eab ne nt and man a ge to see the illness as a challenging chance event. By pursuing a broader sa m ple of patients, w e m ay find that there are m a ny patients who perceive the illness as an enemy and themselves as h e lpless, and may, therefore, have a substantially different vie w of w h at constitutes good adjustment to dialysis.

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APPENDIX A PATIENT ADJUST ME NT TO DIALYSIS SCALE (PADS) Pl e as e indicate th e degree to which~ fe e l that e a ~b_ of the follo w ing ite m s are i m portant for good adjustment to dialysis by circling a nu m be r fro m l to 4 according to the following scale: 1 = irrelevant for good adjust m ent 2 = some w hat important for good adjustment 3 = impo r t a nt but not crucial for good adjustment 4 =crucial; absolutely necessary for good adjust m ent Diet and Fluids l 2 3 4 ( l ) Patient understands the need for restricted diet. 1 2 3 4 ( 2) Patient complies with dietary restrictions. l 2 3 4 (3) Patient understands the need for restricted fluid inta k e. 1 2 3 4 ( 4 ) Patient co m plies with fluid intake restrictions. l 2 3 4 (5) Patient does not abuse alcohol or drugs. Medication 1 2 3 4 (6) Patient takes medication as prescribed. 1 2 3 4 (7) Patient complies with Physician's orders. Hygiene l 2 3 4 (8) Patient d e monstrates good hygiene practices. Treat m ent 1 2 3 4 (9) Patient is present for all treatments. 1 2 3 4 ( l O) Patient arrives on time for all trea tm e n ts. 1 2 3 4 ( 11) Patient does not appear overly anxious about treatment. 1 2 3 4 ( 12) Patient sho w s interest in gaining a good working kno w ledge of his/her illn e ss and treatment. 1 2 3 4 ( 13) Patient does not experience psychological difficulti es with r e g ar d to the machine. l ') 4 ( 14) P a tient giv e s serious thought to hav i ng a kidney transL .) plant. 1 2 3 4 ( l 5) Patient re a cts to needle sticks as being insignificant ports of th e routine. 133

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134 App e ndix A--Continued. l 1 l l 1 1 1 l 1 1 1 1 2 3 4 2 3 4 2 3 4 2 3 4 ( 16) ( 17) ( 18) ( 19) 2 3 4 (20) 2 3 4 ( 21 ) 2 3 4 (22) 2 3 4 (23) 2 3 4 (24) 2 3 4 (25) 2 3 4 (26) 2 3 4 (27) 2 3 4 (28) 2 3 4 (29) P at ient participates a s m uch as possible in the treat ment. Patient e xpresses in terest in h om e di a ly s i s training. Patiet 1 t h o l ds o wn n ee dle site s Patient do es most of the self-c a re durin g treatment. Inter a ction with Staff Patient demonstrates mature interpersonal b e havior with the staff. Patient demonstrates a healthy independence from the staff. Patient feels free to discuss his/her dialysis-related proble m s and fears with staff members. Patient questions medical and nursing charts and regimens. Patient frequently interacts with other patients while at the dialysis center. Patient does not exhibit inappropriate anger or hostil ity tm<1ards the staff. Patient does not make frequent phone calls to unit about medicines, diet, activities, or other minor health problems. Patient cooperates with staff. Patient does not demonstrate minipulative behaviors wit~ staff which demand additional attention. Patient exhibits friendly, pleasant personality. Interaction with Family 1 2 3 4 (30) Patient does not exaggerate his/her complaints. l 2 3 4 (31) Patient exhibits healthy independence from the family. l 2 3 4 (32) Patient demonstrates mature interpersonal behavior with family. l 2 3 4 (33) Patient feels free to discuss his/her dialysis-related problems with family member(s). Patient's Activities and View of Self l 2 3 4 (34) Patient exercises regularly. l 2 3 4 (35) Patient accepts the reality of kidn e y disease and dialysis. l 2 3 4 (36) Patient continues with age-appropriate tasks, such as schoolin g employment, ho u sehold ca re. l 2 3 4 (37) Patient is seldom depressed. l 2 3 4 (3 8 ) Patient strives to establish a meaningful daily rou tine. l 2 3 4 (39) Patient is involved in outside activities. 1 2 3 4 (40) Patient perceives self as a total person.

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135 l 2 3 4 (41) Patient does not spend a lot of time thinking about his/her illness and treat me nt. 1 2 3 4 (42) Patient see k s contact with ot he r dialysis patients outside of the dialysis center. 2 3 4 (43) Patient m a intains social life he/sh e had b e fore be g inI ning dialysis. For each of th e following two questions, circle the answer that is closer to being the way you feel about things as a dialysis patient (or would feel about things if you were a dialysis patient), even though it may not be exactly the way you would describe your thoughts and feelings. l. Which of the following two statements describes the way you tend to see your illness? (Circle one) or a. I tend to see the illness as an unjust and rather over whelmingly destructive enemy. b. I tend to see the illness as one of life's chance events that pose a real challenge for me. 2. Which of the following two statements describes the way you tend to feel about your treatment? (Circle one) or a. I tend to feel I can do many things to help out with my trea tmen t in ways that will ma k e a real difference for me. b. I tend to feel pretty helpless in the face of this ill ness, so I basically have to let others do whatever is necessary for my treatment.

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w en # l 2 3 4 5 6 7 8 < 1 22 75.9 20 69.0 26 89.7 24 82.8 26 89.7 24 82.8 22 75.9 7 24. l 4 Freq. % 1-5 70 87.5 61 77. 2 70 87.5 63 78.8 58 72.5 69 86.3 60 75.0 19 23.8 APPENDIX B Frequencies and Percentages of Nurse Responses per Item by Experience (n for < l yr. experience= 29; n for 1-5 yrs. = 80; n for>5yrs. = 44) Ratings 3 2 1 Freq. Freq. Freq. % % % > 5 < l l-5 > 5 < l l-5 > 5 < l l -5 > 5 x2 33 7 lO 9 0 0 2 0 0 0 7.78 75. 0 24. l 12.5 20.5 0 0 4.5 0 0 0 22 9 17 21 0 l l 0 0 0 10.06* 50.0 31. 0 21. 5 47.7 0 1. 3 2.3 0 0 0 35 3 9 8 0 1 1 0 0 0 2.22 79.5 10.3 11. 3 18.2 0 l. 3 2.3 0 0 0 31 5 17 12 0 0 1 0 0 0 3.74 70.5 17.2 21. 3 27.3 0 0 2.3 0 0 0 27 3 20 14 0 2 3 0 0 0 8.10 61. 4 10.3 25.0 31.8 0 2.5 6.8 0 0 0 37 5 11 17 0 0 0 0 0 0 .24 84. l 17.2 13.8 15. 9 0 0 0 0 0 0 31 7 19 13 0 1 0 0 0 0 1.41 70.5 24. 1 23.8 29.5 0 l. 3 0 0 0 0 10 18 44 26 4 15 5 0 2 3 4.09 22.7 62. l 55.0 59.1 13.8 18.8 11. 4 0 2.5 6.8

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Appendix B--Continued. 4 3 2 l Freq. Freq. Freq. Freq. % % % % # < l 1-5 > 5 < l 1-5 > 5 < l l -5 > 5 < l 1-5 > 5 x 2 9 24 65 26 5 14 17 0 0 l 0 l 0 l l 51 82.8 81. 3 59. l 17.2 17.5 38.6 0 0 2.3 0 1. 3 0 10 7 15 4 20 49 33 2 13 6 0 3 l 6.00 24. l 18.8 9. l 69.0 61. 3 75.0 6.9 16.3 13.6 0 3.8 2.3 11 5 15 5 15 44 24 7 16 8 l 5 5 3.04 17.9 18.8 11 9 53.6 55.0 57. l 25.0 20.0 19.0 3.6 6.3 11. 9 12 8 21 9 19 46 29 2 12 5 0 l l 2.79 27.6 26.3 20.5 65.5 57.5 65.9 6.9 15.0 11.4 0 1.3 2.3 13 9 20 11 16 38 22 3 15 5 l 6 4 2.87 31. 0 25.3 26.2 55.2 48. l 52.4 10.3 19.0 11. 9 3.4 7.6 9.5 14 3 4 3 15 28 14 4 15 11 7 33 16 5.91 10.3 5.0 6.8 51. 7 35.0 31.8 13.8 18.8 25.0 24. 1 41. 3 36.4 15 4 5 l 10 26 17 9 32 16 4 14 10 5. 14 14.8 6.5 2.3 37.0 33.8 38.6 33.3 41.6 36.4 14.8 18.2 22.7 16 7 15 9 14 39 23 4 18 9 3 8 3 1. 55 25.0 18.8 20.5 50.0 48.8 52.3 14.3 22.5 20.5 10. 7 10.0 6.8 17 0 2 l 9 17 10 6 15 17 13 45 16 8.72 0 2.5 2.3 32. l 21. 5 22.7 21.4 19. 0 38.6 46.4 57.0 36.4

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Appendi x B--Continued. 4 3 Freq. Freq. % % I # < l 1-5 > 5 < l l-5 > 5 18 3 6 5 10 27 21 10.3 7.7 11. 4 34.5 34.6 47.7 19 2 3 l 11 30 19 6.9 3.8 2.3 37.9 38.0 43. 2 20 6 20 12 17 40 25 20.7 25.3 27.3 58 6 50.6 56.8 21 3 26 12 20 34 21 10.3 32.9 27.3 69.0 43.0 47.7 22 16 34 23 11 37 17 55.2 43.0 5 2 .3 37.9 46.8 38.6 23 4 ll 7 14 25 23 13. 8 13. 9 15.9 48.3 31.6 52.3 24 5 13 11 14 33 23 17.2 16.5 25.0 48.3 41.8 52.3 25 8 22 10 9 34 23 27.6 2 8 .2 22.7 31. 0 43.6 52.3 26 2 6 3 12 26 21 7.4 7.6 6.8 44.4 32.9 47.7 2 Freq. % < l l-5 > 5 < 1 12 29 9 4 41.4 37.2 20.5 13.8 11 25 13 5 37.9 31. 6 29.5 17.2 3 16 6 3 10. 3 20.3 13. 6 10.3 4 15 9 2 13.8 19.0 20.5 6.9 l 8 4 1 3.4 10. 1 9 .1 3.4 7 33 11 4 24. l 41.8 25.0 13.8 6 28 10 4 20.7 35.4 22.7 13 .8 8 15 8 4 27.6 19. 2 18.2 13.8 6 23 12 7 22.2 29. l 27.3 25.9 l Freq. O / 0 l-5 16 20.5 21 26.6 3 3.8 4 5. 1 0 0 10 12.7 5 6.3 7 9.0 24 30.4 > 5 9 20.5 11 25.0 l 2.3 2 4.5 0 0 3 6.8 0 0 3 6.8 8 18.2 x2 5.52 2.34 4.92 7.58 6.89 7.92 9.95 3.96 3.79 _, w co

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A pp en d ix 8 --Con t in ue d. 4 3 F r eq Fr eq % % # < l 1 -5 > 5 < 1 1 5 > 5 27 14 3 2 17 1 2 34 22 48 .3 4 0 .5 3 8 .6 41.4 43.0 50.0 2 8 7 2 2 13 9 32 24 25.0 2 8. 2 29.5 32 l 41.0 5 4 .5 29 4 5 4 10 36 21 13. 8 6 3 9 l 34.5 45 0 47.7 3 0 9 20 9 10 39 24 31.0 25.0 20.5 34 5 48.8 54 5 3 1 7 15 1 5 15 4 5 24 2 4 l 1 8 8 3 4. l 51. 7 56.3 54.5 32 9 1 4 3 14 46 25 31.0 17 5 29. 5 48.5 57.5 56 8 3 3 14 26 19 1 4 40 19 48 .3 3 2 .5 43.2 4 8 .3 50.0 43.2 34 4 7 8 19 4 1 23 1 4.3 8 8 1 8. 2 67.9 51.3 52.3 35 21 59 29 6 18 12 72 4 7 4. 7 65.9 20.7 22.8 27.3 2 Fre q. % < l 1-5 > 5 < l 3 10 4 0 10. 3 12.7 9. 1 0 9 19 6 3 32 l 24.4 13 6 10.7 10 29 14 5 34.5 36.3 3 1. 8 17.2 8 19 9 2 27.6 23. 8 20.5 6.9 7 1 7 3 0 24. 1 2 1. 3 6 8 0 5 18 3 l 17.2 22.5 6.8 3 4 1 13 4 0 3.4 16 3 9 1 0 3 22 9 2 10.7 27.5 20.5 7. l l 2 2 l 3.4 2 5 4.5 3.4 l Fr e q. % l -5 3 3 .8 5 6 4 10 12.5 2 2.5 3 3.8 2 2.5 l l. 3 10 12. 5 0 0 > 5 l 2.3 l 2.3 5 11 .4 2 4.5 2 4.5 3 6 .8 2 4.5 4 9. l l 2.3 x 2 2 36 7 1 8 2. 8 7 3 79 8 .27 8 43 7 6 1 6. 6 2 3 38 I I w I.D

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I Appendi x B--Continued. 4 3 ,.., l I L Freq. Freq. Freq. Freq. ;/ ,o % % % # < l 1-5 > 5 5 < l 1-5 > 5 < l 1-5 > 5 x 2 36 I 12 34 22 16 38 18 l 8 3 0 0 l 4.92 41. 4 42.5 50.0 55.2 47.5 40.9 3.4 10.0 6.8 0 0 2.3 37 2 6 3 19 39 19 4 29 19 4 6 3 7.73 6.9 7.5 6.8 65.5 48.8 43.2 13.8 36.3 43.2 13.8 7.5 6.8 38 11 28 23 14 44 17 3 8 4 1 0 0 8.01 37.9 35 0 52.3 48.3 55.0 38.6 l 0. 3 10.0 9. 1 3.4 0 0 39 9 17 18 14 50 22 4 9 4 l 4 0 7.54 32. 1 21. 3 40.9 50.0 62.5 50.0 14.3 11 .3 9. 1 3.6 5.0 0 40 19 42 30 9 30 13 1 8 l 0 0 0 5. 13 165. 5 52.5 68.2 31. 0 37.5 29.5 3.4 10.0 2.3 0 0 0 18 14 13 44 21 6 16 9 0 2 0 3.93 41 10 34.5 22.5 31.8 44.8 55.0 47.7 20.7 20.0 20.5 2.5 0 0 42 0 l 1 11 27 17 12 25 14 6 27 11 3. 16 0 l. 3 2.3 37.9 33.8 39.5 41. l 31. 3 32.6 20.7 33.8 25.6 43 7 16 7 15 43 22 5 15 13 2 5 2 2. 72 24. l 20.3 15. 9 51. 7 54.4 50.0 17.2 19 0 29.5 6.9 6.3 4.5 *_p_ < 05 (Note: 11 nurses failed to report their length of experience with dialysis. Therefore, the total n for this table is 153. Furthermore, frequencies for each item may not total 153 because some subjects failed to respond to all 43 items.)

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APPENDIX C Frequencies and Percentages of Patient Responses per Item by Experience (n for < l yr. experience = 12; n for 1-5 .vrs. = 35; n for > 5 yrs. = 14)* Ratings I 4 3 2 l Freq. Freq. Freq. Freq. % % % % # < l 1-5 > 5 < l 1-5 > 5 < l 1-5 > 5 < l 1-5 > 5 l 10 28 12 2 2 l 0 3 0 0 2 0 83.3 80.0 92.3 16. 7 5.7 7.7 0 8.6 0 0 5.7 0 2 6 18 7 3 12 4 l 3 l l 2 l 54.5 51 .4 53.8 29.3 34.3 30.8 9. l 8.6 7.7 9. l 5.7 7.7 3 9 26 10 l 5 4 0 4 0 l 0 0 81.8 74.3 71.4 9. l 14.3 28.6 0 11. 4 0 9. l 0 0 4 7 26 8 2 7 4 0 2 l l 0 l 70.0 74.3 57. l 20.0 20.0 28.6 0 5.7 7. l l 0. 0 0 7. l 5 7 27 10 3 5 3 0 2 0 l l 0 63.6 77. l 76.9 27.3 14. 3 23.1 0 5.7 0 9. l 2.9 0 6 11 30 12 0 4 2 0 l 0 l 0 0 91. 7 85.7 85.7 0 11 .4 14.3 0 2.9 0 8.3 0 0 7 10 29 10 1 5 3 0 1 0 1 0 l 83.3 82.9 71 .4 8.3 14.3 21.4 0 2.9 0 8.3 0 7. l 8 8 26 13 4 4 l 0 2 0 0 2 0 66.7 76.5 92.9 33.3 11 .8 7. l 0 5.9 0 0 5.9 0 I

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Appendix C--Continued and Extended. 9 12 27 13 0 7 l 0 0 0 0 l 0 100.0 77. l 92.9 0 20.0 7. l 0 0 0 0 2.9 0 10 8 21 11 4 11 2 0 0 l 0 2 0 66.7 61.8 78.6 33.3 32.4 14.3 0 0 7. l 0 5.9 0 11 5 14 5 6 12 6 0 4 0 l 3 l 41.7 42.4 41. 7 50.0 36.4 50.0 0 12. l 0 8.3 9. l 8.3 12 7 20 8 4 11 3 l 2 0 0 2 2 58.3 57.1 61. 5 33.3 31. 4 23. 1 8.3 5.7 0 0 5.7 15. 4 13 6 17 10 5 11 4 l l 0 0 4 0 50.0 51.5 71. 4 41.7 33.3 28.6 8.3 3.0 0 0 12. l 0 _,.J ..i:,. N 14 3 9 4 l 6 4 4 7 0 3 11 6 27.3 27.3 28.6 9. l 18.2 28.6 36.4 21. 2 0 27.3 33.3 42.9 15 5 15 5 4 10 4 2 4 0 l 5 4 41. 7 44. l 38.5 33.3 29.4 30.8 16.7 11 .8 0 8.3 14.7 30 8 16 6 17 8 4 9 2 2 6 2 0 2 l 50.0 50.0 61. 5 33.3 26.5 15 .4 16.7 17.6 15.4 0 5.9 7.7 17 l 5 2 l 6 2 4 3 l 6 20 6 8.3 14.7 18.2 8.3 17.6 18.2 33.3 8.8 9. l 50.0 58.8 54.5 18 5 12 3 3 10 4 0 4 0 4 7 5 41. 7 36.4 25.0 25.0 30.3 33.3 0 12. l 0 33.3 21. 2 41 7 19 3 5 2 1 8 1 3 5 2 4 13 5 27.3 16. 1 20.0 9. 1 25.8 l 0. 0 27.3 16. l 20.0 36.4 41. 9 50.0

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Appendix C--Continued. 4 3 Freq. Freq. 0/ 10 % # < l 1-5 > 5 5 < 1 1-5 > 5 2 l 0 l 15. 4 8.3 0 7.7 4 3 2 0 28.6 25.0 6. l 0 2 0 2 0 15 .4 0 5.7 0 3 1 5 1 23.l 8.3 14. 3 7.7 4 2 7 0 28.6 16.7 20.0 0 2 0 3 0 14.3 0 8.8 0 3 2 5 l 21.4 16.7 14.3 7. l 4 2 0 0 28.6 16.7 0 0 6 0 2 0 46.2 0 5.9 0 l Freq. 01 lo < l 1-5 l 2 8.3 5.9 2 5 16.7 15. 2 0 1 0 2.9 l 2 8.3 5.7 3 6 25.0 l 7. l 2 2 16.7 5.9 2 5 16.7 14.3 0 1 0 2.9 3 4 25.0 11 .8 > 5 0 0 0 0 0 0 l 7.7 2 14.3 l 7. l 2 14.3 0 0 2 15. 4 _., w

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Append i x C--Continued and Extended. 29 6 24 10 4 7 4 1 3 0 1 1 0 50.0 68.6 71.4 33.3 20.0 28 6 8.3 8.6 0 8.3 2.9 0 30 6 16 11 4 7 2 2 5 0 0 4 0 50.0 50.0 84.6 33.3 21. 9 15.4 16.7 15. 6 0 0 12. 5 0 31 7 1 8 8 4 11 3 l 3 2 0 1 0 5 8.3 5 4 .5 61. 5 33.3 33.3 23. 1 8.3 9. 1 15.4 0 3 0 0 32 5 19 8 4 9 4 3 3 0 0 2 0 41. 7 57 6 66.7 33.3 27.3 33.3 25.0 9. 1 0 0 6. 1 0 33 7 20 11 3 8 3 l 4 0 l 1 0 58 3 60.6 78.6 25.0 24.2 21.4 8.3 12. l 0 8.3 3 0 0 _, ..i:,. ..i:,. 34 5 10 6 5 11 3 2 8 2 0 5 3 41. 7 29.4 42.9 41. 7 32.4 21.4 16. 7 23.5 14.3 0 14.7 21.4 I 35 12 29 12 0 5 l 0 l 0 0 0 0 00 0 82.9 92.3 0 14.3 7.7 0 2.9 0 0 0 0 36 7 19 5 2 7 3 2 3 2 1 4 2 58.3 57.6 41. 7 16. 7 21. 2 25.0 16. 7 9. l 16.7 8.3 12. l 16.7 37 5 15 5 4 11 3 2 4 l l 4 2 41 .7 44. 1 45.5 33.3 32.4 27.3 16. 7 11 .8 9. l 8.3 11 8 1 8 2 38 4 24 8 6 8 3 0 0 0 l 2 2 36.4 70.6 61.5 54.5 23.5 23. 1 0 0 0 9. l 5.9 15. 4 39 I 6 16 6 3 12 4 2 2 1 1 4 2 50.0 47. l 46.2 25.0 35.3 30.8 16. 7 5.9 7.7 8.3 11 .8 15. 4

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Ap p endix C--Continued. 4 ") 2 1 .J Fr e q. Freq. Freq. Freq. % % % % # < 1 1-5 > 5 < 1 1-5 > 5 < 1 1-5 > 5 < 1 1-5 > 5 40 7 25 8 4 6 3 1 l 0 0 2 2 58 3 73.5 61. 5 33.3 17. 6 23. l 8.3 2.9 0 0 5 9 15 4 41 9 15 8 2 7 4 l 4 0 0 7 l 75.0 45.5 61. 5 16. 7 21. 2 30.8 8.3 12. l 0 0 21. 2 7.7 42 2 8 4 4 6 0 2 2 4 3 19 6 18 2 22.9 28.6 36.4 17. l 0 18.2 5.7 28.6 27.3 54.3 42.9 43 8 14 7 3 7 2 0 8 1 l 5 3 66.7 41. 2 53.8 25.0 20.6 15.4 0 23.5 7.7 8.3 14.7 2 3 .l *For all 43 ite m s, at least half of the cells for the chi-square calculations have ex pecte d cell f requen c ies of less than 5. Therefore, chi-squares are not r ep orted. (Note: 18 patients failed to report their length of experience with di a lysis. Therefo r e, the total n for this table is 61. Further m ore, frequ e ncies for each item may not tot a l 61 because so m e subjects failed to respond to all 43 items.)

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APPENDIX D SUMMARY OF THE STATUS OF EACH ITEM As a way of summarizing many of the results from the questionnaire survey, the table below lists for each item the status it was given by our samples of nurses and patients. For each of the first two columns, an item is checked if more than 75 % of the appropriate group saw the item as being at least important for good adjustment to dialysis. These two columns reflect the contents of the N-Scale and P-Scale, respe c tively. For each of the next two columns, an item is checked if less than 60 % of the appropriate group thought the item was at least important for good adjustment, and less than 60 % thought the item \'Jas not important (i.e., gave it a rating of 11 1 11 or 11 2 11 ). For each of the next two columns an item is checked if 60-74 % of the ap propriate group considered the item at least important. The seventh and eighth columns reflect results from dividing the samples of nurses and patients according to experience with dialysis. They are meant to note items in which neophytes (NPH) and survivors (SVR) dramatically differed in terms of the percentage of each group that perceived the item to be crucial for good adjustment. An item is checked in the seventh column if neophyte nurses at least tended to agree the item was crucial fod good adjustment while dramatically fewer survivor nurses (at least 15 percentage points lower) perceived 146

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147 the item as crucial. There were no ite ms where such differences were revers e d, i.e., where survivors at le ast tend e d to agree an ite m was crucial anrl dr amatica lly f ewer n eophytes di d so. An it em is ch ec ked in tl1e eighth colu m n if survivor patients at le ast t ende d to agr ee that the it~ n was crucial while dra mati cally fewer neophyte patients (at least 25 percentage points lower) perceived the ite m as crucial. There were no items where such differences were reversed. Since there were so few neophyte and survivor patients, the criteria for patients' da ta being included in the table is more stringent than that for nur ses' (25 versus 15 percentage points difference) in order to accommo dat e the fact that large differences in percentages could be produced by as few as two patients in either the NPH or SVR group having an s wered differently. The two criteria (25 and 15 percentage points di fference ) are arbitrary. The final colu mn si mp ly notes the one item ( # 17) whi ch nurses and patients both tended to agree was either irrele vant or only somewhat important for good adjustment to dialysis.

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148 er. u, (lJ (lJ SSz 0.... (lJ (lJ 0 0 SSS4u, 40 SSCJ) CJ) u, u, a:: ::r: 40 0 ro ro :z: 0.... +>> +> Cl. 44u, u, C: V) C: :z: +> .,.... .,SSro co C: +> +> -0 -0 0 0 +> C: +> C: tO C: C: 44Sco Sco +> tO ro o..s:::. 0 .c Su, +> +> +> +> ,-r0.. +> o.+> on.. SSu, u, co co E E 0. 0 0 .0 .0 C: C: .,.... u, .,.... u, E U 0. 0. :::l :::l .,.... ,z 0.... rC: E E u, u, CJ) CJ) (lJ (lJ ro ,- ,SSS::r: Sa:: +> ITEM .I\ I Al u, u, ro ro 00.... o> 0 u, z 0.... :::E :::E :::E :z: :::E V) :z: :z: ( 1 ) understands diet X X (2) co m plies with diet X X X restrictions (3) understands fluids X X (4) co m plies with fluid X X restrictions ( 5) not abuse alcohol X X X (6) takes medications X X (7) follo w s doctor's orders X X (8) good hygiene X X X ( 9) prese n t for all treatments X X X ( 10) on ti m e for all treatments X X (11) not overly anxious X X about treatment ( 12) interest in gaining knowledge X X of illness and treatment ( 13) no psychological difficulties X X with the machine ( 14) ser i ously considers kidney X X transplant ( 15) reacts to needle sticks X X as insiqnificant ( 16) participates much in X X treat m ent ( 17) interested in ho me dialysis X ( 18) h o 1 ds O \l tn needle sites X X -( 19) does m ost of self-ca re X X (20) m a ture int e rpersonal X X behavior with staff ( 2 1 ) healthy independence X X X fro m staff (22) discusses dialysis X X ~roble ms with staff

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149 l/1 l/1 CJ QJ s.... s.... z: 0.. QJ QJ 0 0 s... s.... s.... '+-l/1 4l/1 0 s.... S.Ol Ol l/1 l/1 a:: :c '+-0 0 n:J ro z: 0.. +>> 0.. '+-4V) V) C: V) C z: .p .,.... .,.... s.... s.... (tJ I'd C +> ""O ""O 0 0 +-' C +> C I'd t: t: '+-'+-s.... (tJ s... (tJ +> ru I'd o.c 0.C s... l/1 +> +> +> ,,0.. 0.. 00.. s... s.... l/1 l/1 (tJ ltl E E 0.. 0 0 .D .D C t: .,.... V) .,.... l/1 EU 0.. 0.. :::I :::I .,.... .,.... z: 0.. .,.... C E E l/1 l/1 Ol Ol QJ (lJ ltl .,.... .,.... s... s... s.... :c I.. a:: +> /\ I /\I l/1 l/1 ltl ltl 00.. o> 0 l/1 z: 0.. :E :E LZ :E V) z: z: (23) que st ions me dical charts X X and regimens (24) frequently interacts 1t1ith X X patie nts while at unit (25) no inappropriate ang er X X X tm,1 ar ds staff (2 6 ) no frequent calls to unit X X (27) cooperates with staff X X (2 8 ) not ma nipulate staff for X X additi ona 1 attention ( 29 ) e x hibits friendly, ple a sant personality X X (30) not exag gerat e co mp laints X X X ( 31 ) healthy in dependen ce X X fro m fa mi ly (3 2 ) mature interpersonal X X X behavior with family (33) discusses dialysis X X proble ms with fa m ily (3 4 ) exercises regularly X X (35) accepts reality of situation X X (36) continu es with ageX X appropriate tasks (37) seldo m d epres sed X X (38) establishe s mean in gfu l X X X d a ily routine (39) involved in ou t side X X activities ( ,rn) i)erceives ~erson self as total X X ( 41 ) not d v1e 11 on situation X X { 42) se ek s contact with X X patients outside the unit ( 43) maintains sa me soci a l life X X as befo re dialysis beqan

PAGE 159

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159 Sand, P., Livingston, G., & Wright, R.G. Psychol ogi cal assess me nt of candidates for a h em odialysis program. Ann a ls of Internal ~edi cine, 1966, 64, 602-610. Shald on S. Indep e nd ence in maintenance hae modia ly s is. Lanc e t, 196 8 l, 520-523. Shambaugh, P.W., Hampers, C.L., Bailey, G.L., Snyder, 0., & Merrill, J.P. Hemodialysis in the ho me --Emotional impact on the spouse. Transactions o_f the American Society for Artificial Intern a l Org an s, 1967, J]_, 41-45. Sha m baugh, P.vJ. & Kanter, S.S. Spouses under stress: Group meetings with spouses of patients on hemodialysis. American Journal of Psychiatry, 1969, 125, 928-936. Shea, E.J., Bogdan, D.F., Freeman, R.B., & Schreiner, G.E. Hemodial ysis for chronic renal failure: IV. Psychological considerations. Annals of Internal Medicine, 1965, g, 558-563. Short, M.J. & Wilson, W.P. Roles of denial in chronic hemodialysis. ~rchives of General Psychiatry, 1969, 20, 433-437. Siddiqui, J.Y., Fitz, A.E., Lawton, R.L., & Kirkendall, W.M. Causes of death in patients receiving long-term hemodialysis. Journal of the A mer ican M edical Association, 1970, 212, 1350-1354. Singer, J.L. & Antrobus, J.S. Daydreaming, imaginal processes, and personality. In: P.W. Sheehan (ed.), The Function and Nature of Imagery. Ne\v York: Academic Press, 1972, 175-201. Skipper, J.K. Communication and the hospitalized patient. In: J.K. Skipper & R.C. Leonard (eds.), Social Interaction and Patient Care. Philadelphia: J.B. Lippincott Co., 1965. Speidel, H., Koch, U., Balck, F., & Kniess, J. Problems in interac tion between patients undergoing long-term he mo dialysis and their partners. Psychotherapy and Psychosomatics, 1979, ll, 235-242. Steele, T., Finkelstein, S., & Finkelstein, F. Hemodialysis patients and spouses--Marital discord, sexual problems, and depression. Journa 1 of Nervous and Men ta 1 Disease, 1976, 162, 225-237. Steidl, J.H., Finkelstein, F.O., v/exler, J.P., Feigenbaum, H., Kitsen, J., Kliger, A.S., & Quinlan, D.M. Medical condition, adherence to treatment regimens, and family functioning. Archives of General Psychiatry, 1980, ]]_, 1025-1027.

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161 Yanagida, E.H. & Streltzer, M.D. Limitations of psychological tests in a dialysis population. ~chosomatic M e dicine, 1979, .11, 557-567. Ziarnik, J.P., Fr e em a n, C.W., Sh e rrard, D.J.,& Cal s yn, D.A. Psycho logical correlates of survival on renal dialysis. Journal of Nervous and Mental Disease, 1977, 164, 270-213.

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BIOGRAPHICAL SKETCH James W. Huber was born on November 16, 1949, in Rochester, New York. After graduating from Scotch Plains-Fanwood High School in June, 1967, he attended Wake Forest University and \ Jheaton College, and received a Bachelor of Arts degree in philosophy from the Univer sity of Dela\vare in Newark, Delav,are, in May, 1971. He attended Gordon-Conwell Theological Seminary in South Hamilton, Massachusetts, and received the degree of Master of Divinity in June, 1974. After working as a self-employed house-painter and carpenter for four years, he entered the graduate program in counseling psychology at the Uni versity of Florida, and received the degree of Master of Arts in counseling psychology in August, 1980. Since September, 1981, he has been a psychology intern at the Veterans Administration Medical Center in Brockton, Massachusetts, where he has worked on an in-patient psychiatric ward as well as serving as a consultant to medical units. The degree of Doctor of Philosophy will be conferred in August of 1982, after which he expects to be employed as a counseling psychol ogist in a general medical setting. 162

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I certify that I have read this study and that in my op1n1on it conforms to acceptable standards of scholarly presentation and is fully adequate, in scope and quality, as a dissertation for the degree of Doctor of Philosophy. arry Grate,, Chairman rofessor df Psychology I certify that I have read this study and that in my op1n1on it conforms to acceptable standards of scholarly presentation and is fully adeq ua te, in scope and quality, as a dissertation for the degree of Doctor of Philosophy. \ r (\< .. -'... .. J -:; -'' (-. j ' James Algina As ~ is tant Professor of of Education \ \ c ( Foundations I certHy that I have read this study and that in my opinion it confor m s to accetabl e standards of scholarly pres en ta ti on and is fully adequate, in scope and quality, as a dissertation for the degree of Doctor of Philosophy. I of Psychology

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I certify that I hav e read this study and th at in my opinion it confo r m s to accept a bl e standards of sch o l a rly pr es entati o n and is fully ad eq u J te, in scope and quality, as a dissertation for the degree of Doct o r of Philo s ophy. Ca ~ lyn u tke r" --...__ / As~ ~ stant Professor of Psychology I certify that I have read this study and that in my op1n1on it c onf o r ms to acceptable standards of scholarly presentation and is fully ad e q u ate, in scope and quality, as a dissertation for the degree of D oc t o r of Philosophy. "-_~ -r~::, -_ ----. ..,.. ..--. / ,, .. c :--:-: ,; / -~'Y---1.._ . _..,. ,,,-, c--Rober t Z i1l e "r Professor of Psychology This dissertation was submitted to the Graduate Faculty of the Depart m ent of Psychology in the College of Liberal Arts and Sciences and to the Graduate Council, and was accepted as partial fulfillmen t of the requirements for the degree of Doctor of Philosophy. August 1982 Dean for Graduate Studies and Research

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UNIVERSITY OF FL OR IDA 1111111111111111111111111111111111111111111111111111111111111111 3 1262 08553 6034


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