Title: 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
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Creator: Huber, James W., 1949-
Copyright Date: 1982
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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




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