Hemodialysis

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COPING WITH HEMODIALYSIS: A MID-RANGE THEORY
DEDUCED FROM THE ROY ADAPTATION MODEL
DOROTHY PRISCILLA BURNS
DISSERTATION
Submitted to the Graduate School
of Wayne State University,
Detroit, Michigan
in partial fulfillment of the requirements
for the degree of
DOCTOR OF PHILOSOPHY
by
1997
MAJOR: NURSING
Approved By: Approved By:
Ad$sor Date
UMI Number: 9725820
Copyright 1997 by
Bums, Dorothy Priscilla
All rights reserved.
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ACKNOWLEDGEMENTS
Many individuals contributed their personal time and professional expertise
toward completion of my dissertation. A special thanks to Dr. Virginia H. Rice,
Chairperson of my Dissertation Committee. Dr. Rices willingness to provide
timely feedback, encouragement, commitment, and guidance throughout this
endeavor was most appreciated. These same remarks can be said for the other
members of my committee as well, Dr. Effie Hanchett, Dr. Ruby Wesley, and
Dr. Leon Wilson.
A special thanks is extended to my family, husband-Willie A. Bums,
children-Lamont, Erica, Linda, Priscilla, and Willaton, mother-Mrs. Maude
Moore, cousin-Mrs. Nettie McCullough, daughter-in-law, sons-in-law,
grandchildren, and brothers, who shared in this experience by going the extra mile
to provide encouragement, prayer, and/or taking on additional roles and
responsibilities. Thanks to Lamont for understanding why I had to be away from
home attending school at Wayne State four consecutive summers, during his last
year of High School, and first year of college. With the support of all my family
members and through the grace and mercy of God my dissertation became a
completed document.
Thanks to my special friend who assisted with data collection and always
told me to relax-Mrs. Gwennella Quick, Mrs. Sandra Hicks who proofread my
papers and assisted with data collection, Dr. Janice Brewington- my mentor
throughout the doctoral educational process, and Dr. Judy Pennys warm
demeanor and expert assistance with data analysis. In addition, I acknowledge all
ii
the other many family members, friends and co-workers to numerous to mention
who provided encouragement throughout
I also gratefully acknowledge Dr. Jeanette O. Poindexter who encouraged
me to enter the doctoral program at Wayne State and the following Wayne State
University Employees who contributed to my completion of this dissertation:
Anne Pearson, Secretary, Office of Academic Affairs, College of Nursing
Jane A. Helinski, Academic Service Officer, College of Nursing
Edith R. Werner, Ph. D. Office - Graduate School
m
Table of Contents
ACKNOWLEDGEMENTS......................................................................................... ii
LIST OF TABLES..................................................................................................... .vi
LIST OF FIGURES....................................................................................................vii
Chapter 1:
Purpose of the study........................................................................................ 1
Significance of study.......................................................................................... 1
Statement of the Problem................................................................................. 2
Chapter 2:
Review of Literature......................................................................................... 9
Social Support..................................................................................................37
Limitations....................................................................................................... 39
Chapter 3:
The Roy Adaptation Model............................................................................41
Theoretical Framework................................................................................. 41
Mid-range Theory............................................................................................47
Propositions..................................................................................................... 56
Study Hypotheses.............................................................................................58
Research Questions........................................................................................ 58
Chapter 4:
Method................................................. 60
Design............................................................................................................... 60
iv
Measures................................................................................................................... 66
Procedure......................................................................................................... 72
Data Analysis................................................................................................... 73
Chapter 5:
Results.............................................................................................................. 77
Chapter 6
Discussion........................................................................................................ 94
Appendices.....................................................................................................I l l
References..................................................................................................... 136
Abstract......................................................................................................... 144
Autobiographical Statement.........................................................................146
v
List of Tables
Table
1 Conceptual-Theoretical-Empirical Structure................................................ 49
2 Theoretical and Operational Definitions...................................................... 51
3 Depiction of the Adaptive Modes within the TC-HD.................................55
4 Demographic Characteristics of the Sample................................................ 61
5 Selected Health Related Characteristics............... 64
6 Instrumentation, Alpha, & Statistical Methods........................................... 75
7 Pearson r Correlations Between Study variables..........................................78
8 Means Among Measures of Study Variables............................................... 80
9 The Ten Highest Ranked Problems on the Hemodialysis
Stressor Scale.................................................................................................84
10 The Ten Highest Ranked Coping Methods Identified on
Jalowiec Coping Scale................................................................................. 86
11 R Square for Predicting Total and Subscale Coping from
Perceived Problems..................................................................................... 90
vi
List of Figures
Figure
1 The Person as an Adaptive System..................................................... 42
2 The Theoiy of Coping with Hemodialysis.......................................... 57
3 Path Analysis Model of the Theoiy of
Coping with Hemodialysis................................................................... 89
CHAPTER I
Purpose of the Study
The purpose of this study is to examine the ability of a mid-range theory,
"the Theoiy of Coping with Hemodialysis (TC-HD)" deduced from Roys
Adaptation Model (RAM) (Roy & Andrews, 1991), to describe, predict and
explain the relationships among the variables of age, time on hemodialysis,
socioeconomic status (SES), social support network, perceived problems, coping,
physiological status and psychosocial status of hemodialysis patients. The RAM as
developed by Roy is too broad to test directly, but mid-range theories derived
from the model are more circumscribed and are testable in specific situations.
Significance of the Study
The proposed study has significance for knowledge development, theoiy
development, theoiy testing, and for nursing practice. The credibility of a
conceptual model is indirectly determined when hypotheses derived from the
models propositions or mid-range theories are tested (Fawcett & Downs, 1992).
Testing of mid-range nursing theories helps to identify strengths and weaknesses
of a theoiy and helps theorists to clarify ambiguities and fill gaps in the
conceptual model (Silva & Sorrell, 1992). If this study finds support for the mid
range TC-HD then it will add credibility to the RAM and support its ability to
guide development of mid-range theories.
The development and testing of nursing theories serves to establish a
scientific base for nursing. Nurses encounter clients when they have problems
adapting to environmental stimuli (Roy & Andrews, 1991), such as hemodialysis.
1
One means of increasing nursings understanding of ways individuals cope with
hemodialysis is through testing a mid-range theoiy. Previous studies have not
incorporated problems or stressors of hemodialysis, coping, results of coping, and
environmental stimuli influencing problem identification into one theoretical
formulation. Thus veiy little is known about the relationship of these variables
in hemodialysis patients. Testing of this theoiy is expected to increase nurses
understanding of the variables influencing what hemodialysis patients identify as
problems and the effects of the intervening variables of perceived problems and
coping efforts on the physiological and psychosocial status of hemodialysis
patients.
Statement of the Problem
This study focused on the coping process in patients receiving hemodialysis
as replacement therapy for the treatment of End Stage Renal Disease (ESRD).
In order to live, individuals diagnosed with ESRD must make a treatment choice
of either hemodialysis, peritoneal dialysis, or renal transplantation (Daniels, 1991;
Ed dins, 1985). Most ESRD patients in the United States receive hemodialysis.
Peitzman (1989) wrote that the experience of ESRD patients is mainly the "illness
of hemodialysis", the treatment becomes the sickness. In fact, patients receiving
hemodialysis refer to themselves as dialysis patients (Peitzman, 1989, p. 28).
The need for such an invasive therapeutic measure to maintain life affects the
health and virtually all other aspects of a persons life. Hemodialysis patients have
described multiple problems associated with being on hemodialysis and to a lesser
degree the ways that they have coped with these problems (Baldree, Murphy, &
Powers, 1982; Gurklis & Menke, 1988).
3
Observations of hemodialysis patients within hospitals and hemodialysis
centers and hearing their comments about problems associated with hemodialysis
led this investigator to wonder how they coped. Thus, the impetus for this
research grew out of clinical experiences with hemodialysis patients. In this
study, a mid-range theory was used to link factors thought to influence how
hemodialysis patients cope, and how coping efforts influenced their current
physiological and psychosocial statuses.
Identifying needs of the chronically ill and decreasing long-term effects of
chronic illness are two national health objectives stated in Healthy People 2000
(U. S. Department of Health, 1992). Though not public polity, this document
contains National Health Promotion and Disease Prevention Objectives aimed at
improving the health status of all Americans (Shannon, 1991; U. S. Department of
Health, 1992). These objectives were developed over a three year period in a
collaborative effort of the Public Health Service and numerous other organizations
across the United States. Nurses, as major providers of health care, are expected
to contribute to the achievement of the Healthy People 2000 goals (Shannon,
1991). The National Institute for Nursing Research supports research on the care
of clients with chronic illnesses, and individual and family responses to
dependence on technology (Cowan, 1992). This study focused on individuals who
were receiving hemodialysis as a treatment for ESRD, a permanent, irreversible
condition in which kidney function is inadequate for sustaining life. These
individuals are referred to as hemodialysis patients in this study.
ESRD
ESRD is a chronic illness in which the persons kidneys are unable to
4
remove excessive metabolic waste, potassium, sodium and water from the body.
Creatinine, urea, phosphate, sodium, and potassium levels increase, excess acids
accumulate, water is retained, and urine production is drastically reduced.
Individuals diagnosed with ESRD disease must depend on renal replacement
therapy, i.e., hemodialysis, peritoneal dialysis, renal transplantation, for removing
these waste products from the body (Ignatavicius, Workman, & Mishler, 1995).
Hemodialysis is most often the treatment of choice in the United States for
ESRD (Farley, Kallich, Carter, Lucus, & Spritzer, 1994).
Hemodialysis
Hemodialysis is a term derived from the prefix hemo meaning blood and
the Greek words dia (through) and fysis (dissolution) (Thomas, 1989). Dialysis
means the passage of a solute through a membrane. Hemodialysis is a means for
compensating for some of the lost functions of the kidneys by circulating blood
through an external dialyzer with artificial semipermeable membranes. Through an
individuals vascular access site, a hemodialysis machine removes the patients
blood, pumps the blood through the artificial kidney and returns the blood to the
body. Within the artificial kidney the patients blood flows on one side of the
semipermeable membrane and a solution of electrolytes and water (dialysate)
flows on the other side of the membrane. As the individuals blood passes through
the artificial kidney excess water, electrolytes and metabolic waste flow into the
dialysate by means of diffusion and osmosis. During hemodialysis bicarbonate and
calcium move from the dialysate into the blood (Ignatavicius, et al. 1995).
In 1943, Willem Kolff and Hendrik Berk constructed the first successful
artificial kidney for human hemodialysis (Nissenson & Fine, 1993). Rolff, a Dutc
physician, performed the first hemodialysis on a kidney failure patient in 1943
(Drukker, 1989). The first hemodialysis treatment in the United States was
performed in 1948 by Drs. Erring Kroop and Alfred Fishman at Mt. Sinai
Hospital, New York City (Nissenson, Fine, & Gentile, 1990).
From 1943 to 1960, the artificial kidney was used mainly to save lives of
patients in acute renal failure, a condition considered reversible (Czaczkes & De-
Nour, 1978; McBride, 1990). Prior to the 1960s individuals who developed ESRD,
an irreversible condition, usually died (Bloembergen & Port, 1993). Quintons
development of the shunt made it possible for physicians to obtain continuous
access to a persons circulation and to use hemodialysis to treat chronic renal
failure (McBride, 1990). In 1960, a 39 year old machinist, Clyde Shields, became
the first chronic irreversible kidney failure patient to receive repeated
hemodialysis (Czaczkes & De-Nour, 1978; Drukker, 1989). He received
intermittent hemodialysis once or twice a week up to the time of his death in 1971
from a myocardial infarction (Drukker, 1989).
As indicated above, technology became available to treat ESRD in the
1960s. This was an important breakthrough for patients. However, thousands of
renal failure clients continued to suffer because only a limited number of
physicians were able to perform the treatment and few patients could afford the
$40,000 annual fee for hemodialysis (Daniels, 1991). The passage, in 1973, of
Public Law 92-603 created a special provision of Medicare for individuals of any
age with ESRD. As a result of this bill, federal reimbursement for many expenses
assocoated with hemodialysis and other renal replacement therapies became
available. This established almost universal access to hemodialysis treatment and
6
has extended the lives of many people (Ignatavicius, et al., 1995). In the first year
the cost of the Medicare ESRD Program was 229 million dollars, covering 11,000
patients. In 1988 the cost increased to 3.7 billion dollars for 110,000 dialysis and
transplant clients; an almost 12 fold increase (Ford & David, 1993). Since 1981,
the number of people on hemodialysis has been increasing each year (U. S.
Department of Health, 1992). The annual growth rate of individuals with ESRD
is about ten percent; the greatest increase is among individuals sixty-five and older
(Ignatavicius, 1995). This increase is due to improved diagnosing, prolonged
lifespans, and medical reimbursement for dialysis. Of the total ESRD population
in 1989, 66% were Caucasians and 29% were African Americans (Bloembergen &
Port, 1993). The mortality rate among the United States dialysis patients is 24%
per year (Lozano, 1994).
Two primary causes of ESRD are diabetes mellitus (32%) and
hypertension (28%) (Ignatavicius, et al., 1995). It is expected that ESRD, as a
secondary problem for persons with these illnesses, can be reduced through
improved management of hypertension and diabetes (Peitzman, 1989; U. S.
Department of Health, 1992). The ESRD Program has made it possible for
persons diagnosed with ESRD to live longer (Daniels, 1991; Peitzman, 1989).
However, the quality of their lives is still being evaluated (Evans, et al., 1985;
U. S. Department of Health, 1992).
Technological advances, such as development of an artificial kidney, have
improved the ability to treat formerly fatal kidney diseases, but these advances
have created new demands for patients (Neki, 1986). That is, chronically ill
individuals must now deal with factors related to their illness and to the treatment
7
itself. This study focused on problems related to the treatment, hemodialysis.
The hemodialysis machine is a lifesaver\ but not a "cure" for ESRD
(Jones, 1992); nor does it replace the endocrine or metabolic functions of the
kidneys (Ignatavicius, et al., 1995 ). Hemodialysis becomes a vital part of the lives
of hemodialysis patients; most receive hemodialysis treatments three times a
week. The need for such an invasive therapeutic measure to maintain life effects
the health and virtually all other aspects of these individuals lives (Chowanec &
Brink, 1989; Neld, 1986). In addition, they must deal with problems related to
the hemodialysis and the illness itself (Jones, 1992), for example, fatigue, muscle
cramps, limitations of fluids, added financial burdens, difficulties holding a job,
impotence, changes in physical appearance, uncertainty about the future, and
limits on time and place for vacations (Baldree, Murphy and Powers, 1982;
Gurklis, 1992). Problems created by ESRD, such as anemia, disturbed calcium
metabolism, skin pruritus, altered pigmentation, and impotence are usually
unchanged by hemodialysis. Hemodialysis patients must also take medications,
restrict their intake of water and certain foods, and have a vascular access for
hemodialysis needles/lines (Ignatavicius, et al., 1995).
The manner in which individuals cope with a chronic illness, such as ESRD
and treatment, influences the degree to which they are able to adjust to the
physical care, demands, and life-style changes associated with illness (Miller,
1992). Beliefs, family structure, family support, race, age, and socioeconomic
status all influence how human beings deal with a life stressor such as
hemodialysis (Lazarus & Folkman, 1984; Pearlin & Schooler, 1978; Roy &
Andrews, 1991).
Although researchers have identified stressors associated with hemodialysis,
authors often do not identify conceptual frameworks used to guide their studies
and to explain findings. Exceptions are two studies which used a stress and coping
framework to study stressors and coping methods of hemodialysis patients (e.g.,
Baldree, Murphy, & Powers, 1982; Gurklis & Menke, 1988). Another study used a
variation of the adaptive tasks framework to explore coping strategies of twenty
dialysis patients (Littlewood, Hardiler, Pedley, & Oiley, 1990). Conceptual or
theoretical frameworks present a distinctive way of viewing particular problems or
events and provide a frame of reference for the interpretation of findings. In
addition, they guide researchers in the formulation of research questions and in
the identification of concepts from which study variables are derived (Fawcett,
1989). Thus, there is a need for studies using a conceptual framework and/or
theories as a guide for research. A mid-range theory derived from the Roy
Adaptation Model (1991) by this researcher will be used to guide this study. Roys
Adaptation Model was selected to guide this study because it explicitly focuses on
how individuals cope both physiologically and psychosocially with environmental
change. This study is expected to add to the body of nursing knowledge about a
persons responses to environmental changes previously generated by other
nursing scholars using the RAM. The review of literature presented in the next
chapter will describe the existing level of support for propositions of the mid-
range theoiy discussed in chapter three.
CHAPTER II
Review of Literature
Hemodialysis patients are chronically ill individuals who have to deal with
unique on-going life problems (Pearlin & Schooler, 1978), decreases in functioning
(Billing & Moos, 1984), treatment-related demands (Neki, 1985), lifestyle changes
(Badger, 1992; Miller, 1992), additional health problems (Reid, 1992), and disability
(Pollock, 1993). Hemodialysis is an invasive therapeutic measure for ESRD that
effects virtually all aspects of a persons life. This chapter focuses on the hemodialysis
research literature. The literature review was conducted in order to identify the
level of support for the relationships posited in the mid-range theoiy of coping
with hemodialysis (TC-HD). (See Figure 2)
One of the earliest studies dealing with psychological responses to
hemodialysis was conducted by Wright, Sand, and Livingston (1966) who used a
descriptive exploratoiy design to describe types of psychological stress experienced
by these patients, and to identify adaptation to such stressors. No conceptual
framework was specified. The non-random sample consisted of all 12 patients
receiving hemodialysis at a dialysis center in Seattle. Prior to beginning
hemodialysis treatments, ten of the subjects were interviewed by a psychiatrist and
tested by a psychologist. Follow-up interviews, repeat MMPIs and a self-rating of
happiness were obtained six months to two years after hemodialysis treatments
began.
Patients identified multiple psychological stressors related to losses or
injuries. These included the frequency, duration, and technique of dialysis, loss of
9
job, lack of energy, impaired concentration, restricted use of extremities, dietaiy
restrictions, and a loss or decrease in sexual desire. After months of recurrent
hemodialysis treatments the major stressors were related to job changes or marital
problems. Subjects psychological reactions to these problems included denial,
projection, and depression. However, a majority of subjects were able to maintain
adequate family relationships, provide self-care, and work. An individuals past
experiences and current life situation influenced the potential sources of stress
identified. Depression occurred more often in patients where support was not
readily available at home.
Beard (1969) conducted an exploratory study of the psychological reactions
of patients to learning of the diagnosis of ESRD. The fourteen patients in Beards
study ranged in age from 15-49 years. Data from interviews and psychiatric
evaluations of subjects were examined for expressions of fear of death and fear of
living. These two conflicting and coexisting fears were expected to be experienced
by ESRD patients as they anticipated lifelong hemodialysis or a period of
hemodialysis followed by kidney transplantation.
Findings indicated that all fourteen patients in Beards study described
fears of imminent death, the initial and recurrent reaction to learning of the
diagnosis of ESRD. Eleven of the fourteen patients stated that their second
reaction was denial. Following a period of denial, eight patients described feelings
of sadness, anger, discouragement, depression, and hopelessness.
The fear of living was another reaction to the diagnosis of ESRD. Fear of
living seemed as intolerable as the fear of death for this group of patients. Results
from psychiatric evaluations of all participants indicated that the most mature
11
patients, patients who had a strong, deep relationship with a significant person,
and patients who had the ability to draw upon that relationship during the time of
stress, discouragement, and loneliness, made the best adjustment to their illness.
Reichman and Levy (1972) used a descriptive -exploratoiy design to study
25 hemodialysis patients over a four year period. No conceptual framework was
described. Purposes were: (1) to describe the origin of depression in hemodialysis
patients, (2) to describe stages of adaptation to hemodialysis, (3) to correlate
findings with events in subjects lives, and (4) to describe a central stress for
study subjects.
The sample, ranging in age from 15-56, consisted of 25 of 28 patients
accepted into a hemodialysis program in a northeastern state between 1964 and
1968. Criteria for selection into the program included having terminal kidney
failure, being without another life-threatening illness, and being free from
psychosis. Because adolescents and older aldults have serious medical problems
associated with hemodialysis these researchers perferred paticipants between the
ages of 18 and 50, however, four patients who were not within this age limit were
accepted into the program. Their ages were 15, 51, 54, and 56. No rationale was
given for the inclusion of subjects in the study who did not meet the age criteria.
Data were collected over a four year period. The two primaiy investigators
interviewed subjects several times over the study period. Additional data were
obtained from conversations with the hemodialysis centers staff regarding their
observations of subjects behaviors. Interviewers used open-ended questions;
responses were tape recorded and transcribed by the two investigators. No specific
technique for data analysis was identified.
12
Findings indicated that patients in this study were depressed at the initial
interview. Being selected into the hemodialysis program after being near death
created stress for this group of patients, made them less dependent on others, and
increased their chances of being productive again. Becoming productive again was
identified as a major stressor. In addition, patients were described as going
through three stages of adaptation to hemodialysis. The first stage termed
"honeymoon" was experienced by 16 of the 25 subjects. During the honeymoon
period subjects showed signs of marked improvements and experienced feelings of
confidence and hope. Most still experienced periods of anxiety, insomnia,
apprehension, and anger during this period. Stage two, "disenchantment and
discouragement," was experienced by 12 of the 16 subjects who had experienced
the honeymoon. The period of disenchantment and discouragement was
dominated by feelings of sadness, helplessness, and physical complications.
Twelve patients affect changed in relationship to a stressful event such as
returning to work or to household duties. During this stage five subjects died.
Gradual transition to the final stage of "long-term adaptation" was experienced by
the remaining twenty patients to varying degrees.
The period of long-term adaptation was dominated by the patients
acceptance of his own limitations and the shortcomings of hemodialysis.
Adaptation was a gradual process and included periods of emotional and physical
well-being alternating with depression, fear, and aggressive feelings. Denial was
the most common defense mechanism used in this stage.
Dimond (1979) studied hemodialysis patients to determine the relationships
among three dimensions of social support, medical status and adaptation. All of
13
the 44 patients in one hemodialysis unit were asked to participate in the study: 36
consented. Unstructured interviews, mailed questionnaires, observation, and
review of medical records were used to collect data over a six month period.
Validity and reliability of some of the instruments used were stated. The
Criterion-related Validity coefficient for the Behavior Morale Scale (MacElveen,
1977) ranged from .48 to .70. MacElveen reported a Cronbachs alpha reliability
coefficient of .95. The Sickness Impact Profile (SIP) (Gilson, Gilson, & Bergner,
1975) was used to measure changes in social functioning. Validity coefficients
ranged from .49-.61, test-retest reliability was .88 (Bergner, Bobbitt, Pollard,
Martin, & Gilson, 1976). Family support was measured by the Family
Environment Scale (FES) (Moos, & Insel, 1974); test-retest reliability ranged from
.73-.86 (Moos & Insel, 1974). Validity of the FES was not reported. Spousal
support was measured by an instrument developed by Dimond (1979). Dimond
reported a reliability of .70 for this scale, validity data were not included. Presence
of a confidant was measured by asking subjects if they had a person they
could confide in. The number of medical complications was used to measure
medical status.
Results of this descriptive correlational study indicated a positive
relationship between social support measures (family cohesion, spouse support,
presence of a confidant) and adaptation as measured by morale and level of social
functioning since initiation of hemodialysis. There was a negative correlation
among family cohesion, presence of a confidant and changes in social functioning.
That is, subjects who had greater family cohesiveness and the availability of a
confidant identified fewer changes in social functioning. Presence of a confidant
14
was associated with fewer medical complications.
Dimond (1980) studied the relationship between cognitive and behavioral
control coping strategies and adaptation to maintenance hemodialysis using a
descriptive correlational design and the concept of stress as described by
Mechanic (1968) and the concept of adaptation as described by Feldman (1974)
as the general framework. Cognitive and behavioral control were considered two
coping strategies for mediating responses to stress. Data were collected on a
convenience sample of 36 hemodialysis patients, ages 22-77 years. Patients
received dialysis at home or on the Renal Unit. Duration of dialysis ranged from
5 to 66 months. Measures of adaptation were morale, change in social functioning,
number of complications secondary to hemodialysis, and stability of physical
status.
Coping strategies as well as demographic information were obtained from
interview data collected by the principal investigator. Each patient was interviewed
once. After interviews, subjects completed the Sickness Impact Profile (SIP) that
provided data relative to changes in social functioning. Registered Nurses on the
Renal Unit used the Behavior-Morale Scale (BMS) to rate patients morale. The
Medical Director of the Renal Unit assessed stability of patients physical status.
The number of medical complications was obtained from a review of patients
medical records. Ratings of morale and physical stability were performed at
approximately the same time as interviews.
Validity and reliability data for the BMS and SIP for this study were not
reported. Previous reported correlations between the BMS and a single morale
question ranged from .48 to .70; previous Cronbachs alpha was .95 (MacElveen,
15
1977). The range of correlations between criterion measures and the SIP was .49
to .61; test-retest reliability was .88 (Bergner, et al., 1976).
Findings from Dimonds study indicated that patients who reported the use
of short-term planning were more likely to have high morale and few changes in
social functioning since the onset of dialysis. In addition, this group had stability
of physical condition and fewer medical complications. Age, sex, length of time
and place of treatment did not influence coping. There was a significant
relationship between perceived progress and morale, those who had a positive
assessment of their progress had higher morale.
OBrien (1980) used a correlational panel design to study the relationship
between perceived expectation of family and friends and social functioning of
hemodialysis patients. The conceptual framework was Symbolic Interactionism as
described by Mead (1934). At the initial data collection time, all patients receiving
hemodialysis at three outpatient centers who met the criteria for inclusion in the
study were interviewed (N=126). Three years later, fifty percent of the patients
in the original sample were reinterviewed (N=63). Most of the patients not
interviewed at time two had died (47); other patients had moved away, or
received kidney transplants, home hemodialysis, or irregular treatments.
During structured interviews a researcher-developed instrument was used
to collect data on patients perceived expectations and social interactions. Content
validity of the instrument was established through use of a panel of experts
(OBrien, 1980); Cronbach alphas ranged from .56 to .91 for the initial interview
and .52 to .91 for the follow up interview (OBrien, 1980). Three dimensions of
the patients social functioning were measured (interactive behaviors, quality of
16
interactions, and alienation). Alienation was measured by the Dean Alienation
Scale(DAS) (Dean, 1961). This scale "measures alienation in terms of
powerlessness, normlessness, and social isolation" (OBrien, 1980, p. 362). No
validity or reliability data were provided for DAS.
Results of both the initial and reinterviews, showed statistically significant
positive correlations between patients perceived expectations of family and friends
and social interactional behavior. There was an inverse relationship between
perceived family support and alienation; when stronger family support is perceived
alienation is decreased. Patients with more education and/or professional level
jobs reported higher levels of social interactional behavior while, unskilled workers
reported the lowest levels of interactional behavior. OBriens (1979) earlier study
of compliance with hemodialysis regimen within this same group of patients
indicated that unskilled workers and persons who lived alone had lower
compliance rates than professionals and persons who lived with their families.
De-Nour (1982) conducted a descriptive survey of hemodialysis patients in
Israel to determine their degree of social adjustment The purpose of the study
was to obtain information about the leisure activities of patients receiving
hemodialysis in a number of hospital units in Israel. Patients who did not speak
the language and/or did not want to participate were excluded from the study.
One hundred and two patients agreed to participate. The total patient population
on the hospital units and the specific language spoken by subjects were not
indicated. The age range of subjects was 14-74 years, and time on dialysis
averaged 3.38 years. No conceptual framework was specified.
De-Nour used the Psychosocial Adjustment to Illness Scale (PAIS) to
17
gather data relative to patients opinions of their adjustment. Six items on the
PAIS measured leisure activity. Subjects rated the degree to which their illness
had impaired their interest and participation in social activities on a four point
scale; 0 indicating no change, to 3 indicating no interest or participation in social
activities. Low scores indicated no changes. To measure emotional factors that
may influence changes in leisure activities since being on hemodialysis, patients
were asked to complete the Multiple Affect Adjective Checklist (MAACL).
There was a wide range of responses on the PAIS, from patients who
reported no change in leisure activity to patients who had marked changes in
leisure activities since being on hemodialysis. The scores of leisure activities
correlated with anxiety, depression and hostility scores on the MAACL. Non
significant negative correlations were found between leisure activities and length
of time on dialysis (r=-.16 among the women; -.11 among the men). No validity
or reliability or data were reported for measures used.
The youngest and oldest patients reported more problems in their social
life. The mean scores on the leisure scale were 9.78 (SD=4.5) for patients 29
years and younger, 6.71 (SD=5.7) for patients aged 30-39, 6.19 (SD=4.4) for
patients aged 40-49, and 9.39 (SD=4.9 for patients 50 years and older. There was
a statistically significant difference between changes in leisure activities of the 30-
49 year olds and those 50 years and older.
Baldree, Murphy, and Powers (1982) used a descriptive correlational design
to describe the incidence and degree of stressfulness of hemodialysis-related
stressors, coping strategies commonly used by hemodialysis patients, the
relationship between stressors identified by dialysis patients and coping strategies
18
used. Thirty-eight (38) patients from a pool of 160 attending two hemodialysis
centers were selected to participate in this study because they met the following
sample criteria: age 21-60 years; on hemodialysis at least 6 months: spoke, read,
and wrote English; and had no other major illness. Thirty-five (35) of the 38
patients selected agreed to participate in the study. Data were collected using a
new Hemodialysis Stressor Scale (HSS) developed by the authors and the Jalowiec
and Powers (1981) Coping Scale. Researchers indicated that both scales had
content validity developed by an extensive review of the literature and the use of
experts. The Hemodialysis Stressor Scale (HSS) was piloted tested on three
hemodialysis patients. These three patients agreed that 28 of the 29 items were
stressors. The ability to have children was the only item on the tool not seen as
stressful. This finding could be related to the age (mean 42)of the sample.
To determine reliability of the newly developed stressor scale thirteen of
the patients repeated the HSS two weeks following the study; Spearmans rank
ordering of the repeated rating indicated test-retest reliability (r=.71, p .01).
Test-retest reliability for the Coping Scale was acceptable (r=.79, p .001).
Patients completed the questionnaires during dialysis treatments. The mean
number of stressors respondents reported was 16 with a small SD of .72. Stressors
identified most often by subjects were limitations of fluids, muscle cramps, fatigue,
uncertainty relative to the future, food limitations, interference with job, itching,
limitations of physical activities, and changes in physical appearance. Muscle
cramps and fatigue were the most stressful physiological stressors and fluid
restriction was the most stressful psychosocial stressor. Nine of the thirty-five
patients identified additional stressors other than those on the HSS (e.g., voice
19
changes, hiccups, feeling less of a woman).
Additional findings of the Baldree, Murphy, and Powers (1982) study
indicated that problem-oriented coping methods were used more often than
affective coping methods. The most frequently used problem-oriented coping
methods were maintaining control, looking at the problem objectively, and
accepting the situation. Prayer, hope and worry were the most frequently used
affective coping methods.
Findings indicated no significant associations between stressors and coping
methods. That is, persons reporting a large number of stressors did not necessarily
report using a large number of coping strategies. Patients on hemodialysis for one
to three years indicated the greatest number of stressors. However, patients on
hemodialysis for less than twelve months reported fewer stressors than patients on
hemodialysis more than four years.
Artinian (1983) used grounded theory to describe five dialysis role
identities and identified factors influencing movement from one role identity to
another. Forty-five young adults between the ages of 18 and 30 were interviewed,
two to three times, over a two year period. Five patterns in the process of role
identity transformation in the process of adapting to dialysis were identified:
worker, waiter, emancipated, undecided, and true dialysis patient role. Patients in
the workers role have rejected the sick role and consider themselves as "normal";
dialysis was fitted into their lives. Individuals within the "waiters" role refused the
label of dialysis patient, intensely disliked the dialysis regimen, and awaited a
kidney transplant or death. The "emancipated" role included patients who had
experienced a reversal of kidney disease after starting on dialysis, thus, they were
20
able to return to their normal activities. Wondering if dialysis was necessaiy for
them and having recently started on dialysis categorized individuals within the
undecided role. True dialysis patients were those who had accepted the sick role
and centered their lives around dialysis.
The overall aim of OBriens (1983) longitudinal study was to describe
behaviors adopted by chronic hemodialysis patients in the process of coping with
their illness and its treatments. Focused unstructured interviews were added to
structured interviews that were used in phase one and two (OBrien, 1980) as a
data collection method during phase three. Thirty three (33) of the 126 patients in
the initial study were interviewed during the third phase of OBriens study.
Thirty (30) of the 63 patients reinterviewed at time two had died. The patients
surviving at time three were ones who reported the greatest amount of social
support from family and friends and the most satisfaction with social interactions.
Over the course of this study the physical condition, self-care activities, and
attitudes of some patients improved; physical deterioration occurred in others,
often resulting in death. Patients who had indicated that they worked full time
were more often professional workers than unskilled or semi-skilled workers.
Female patients reported they were able to perform non-heavy household duties.
Problems identified by patients included, fatigue, nausea, hypotension, fear of
dialysis, length of dialysis treatment, restricted diet and fluids, depression, social
alienation, loneliness, dependency on family, society, and the machine, stigma of
hemodialysis, decrease body image, decreased libido, role difficulties, death of
other patients at the dialysis center and a decrease in ability to particpate in
leisure activities with familiy and friends.
21
Younger patients and those who had been on hemodialysis more than four
years had the lowest compliance scores. Highest compliance scores were among
patients with over two years of college, professional occupations, and/or incomes
below $3000 or over $25,000.
Patients perceptions of family support varied. Most patients reported
positive perceptions of support by family members. However, other patients
reported that family support was a problem or absent. Religious faith, denial, and
focusing on others were three coping strategies used by participants in OBriens
panel study.
Olsens (1983) meta-analysis of forty studies reporting variables predictive
of adjustment in hemodialysis patients identified family relations, pre-dialysis
functioning, and personality as variables predictive of adjustment to hemodialysis.
Support and closeness of the family (family relations) accounted for 20% of the
variance in adaptation. Measures of adaptation included compliance, morale,
medical status, potassium levels, and weight gain. Age, sex, marital status,
education, time on hemodialysis, and health beliefs were not found to be
significantly predictive of adjustment to hemodialysis treatments. Education as a
predictor was the only demographic variable which-approached statistical
significance, accounting for less than 5% of the variance in adjustment to
hemodialysis.
Sherwood (1983) used a descriptive survey to study a sample of 55
hemodialysis patients. No conceptual framework was specified. Study purposes
included (1) identifying major life areas most affected by renal failure and
hemodialysis and (2) determining if serious disruptions were more frequent in
males, blacks, or older patients. Impact of the illness and response to hemodialysis
were addressed as a single phenomenon. Data were collected by semi-structured
interviews from a random sample of 55 hemodialysis patients, using open ended
questions and a thirty page questionnaire.
During the interview subjects were asked to what degree each of the
following areas of their lives were impacted by renal failure and hemodialysis:
employment, vacation, leisure time, eating habits, sexual activity, ability to enjoy
life, self-esteem, sense of security, relationship with friends, social contacts, and
family relationships. Subjects reported that each area was affected to some degree
but employment, vacation, leisure time, eating habits, and sexual activities were
the five areas most affected. The above eleven areas were compared with
demographic factors such as age, socioeconomic status, time on hemodialysis,
race, and gender. Findings indicated a small negative correlation between
socioeconomic status and employment (r=.23). That is, the lower the
socioeconomic status the more employment activities that had been affected
(e.g., had to quit work, didnt have the strength for the job, boss wasnt sensitive).
Length of time on dialysis showed a small correlation with leisure time activities.
The longer a patient had been receiving hemodialysis, the less leisure time
activities were affected (r=.23). Being a new patient impacted more on the areas
of leisure time activities and family relationships.
Siegal, Calsyn, & Cuddihee (1987) used a descriptive correlational design
to examine the relationship between social support and psychological adjustment
and to test a hypothesis derived from crisis theoiy stating that social support was
more positively correlated with adjustment in the earlier stages of an illness than
23
in later stages. The sample consisted of 101 of the 106 patients receiving dialysis
in two dialysis centers. Of the six who did not participate, two had refused and the
conditions of the other four were too unstable. Patients were asked how often
they had seen individuals in their network and to identify how helpful each
member of the network had been in helping them to cope with hemodialysis. In
addition, patients completed a leisure activity questionnaire and the Brief
Symptom Inventory (Derogatis, 1975). Validity and reliability data were not
reported in the study.
Depression, anxiety, and somatic complaints were the most common
symptoms identified by participants. Findings indicated that social support from
friends and family were predictive of psychological adjustment (fewer symptoms).
Helpfulness of confidant was most predictive of psychological adjustment
Frequency of contact with friends and relatives was negatively related to
adjustment Social support was found to be more predictive of psychological
adjustment in patients who had been receiving hemodialysis less than two years
(r=.37) than in those who had been receiving hemodialysis for more than two
years (r=.08); a finding supportive of crisis theory. Leisure activities were not a
major source of social support
Another descriptive study was conducted by Bihl, Ferrans and Powers
(1988) to compare stressors, quality of life, and health status of hemodialysis and
continuous ambulatory peritoneal dialysis (CAPD) patients. Stressors related to
both modes of treatment were identified. Total sample size was 18 hemodialysis
and 18 CAPD patients matched on age, gender, and race. Absence of mental
illnesses and the ability to speak were the criteria used to select subjects. Ages
24
ranged from 27-75 years in the CAPD group and from 24-73 years in the
hemodialysis group. Mean length of time on CAPD was 11.8 months (SD = 11.7).
Mean length of time on hemodialysis was 36 months (SD = 25). Half of the
CAPD subjects had previously been on hemodialysis and two hemodialysis
subjects had been on peritoneal dialysis.
Data were collected using semi-structured interviews conducted while
patients were on hemodialysis (dialysis group) or during "dwell time" (CAPD
group). Patients on CAPD are dialyzed 24 hours a day. "dwell time" refers to the
time dialyzing solution is in the persons abdomen. The Hemodialysis Stressor
Scale developed by Baldree, Murphy, and Powers, (1982) was used to measure
stressors. Three items specific to CAPD patients and three items specific to
hemodialysis treatments were added to this scale. The researchers reported an
internal consistency reliability coefficient of .80 for their study. The Quality of Life
Scale (QLS) (Ferrans & Powers, 1985) was used to measure quality of life.
Criterion-related validity correlations were .75 and .65; Cronbachs alphas were .93
and .90 (Ferrans, et al., 1985). Health status was measured by a 10-point self-
anchoring scale (Cantril, 1965).
Findings indicated that overall scores for stressors, quality of life and health
status were not significantly different between the two groups. Specific ranking of
stressors did differ, however. For example, uncertainty about the future, limits on
time, and frequent hospitalizations were ranked highest by the CAPD group,
whereas fatigue, boredom with the routine, and limitations of physical activities
were top ranked stressors for the hemodialysis group. Perceived health was related
to quality of life for the hemodialysis (r=.56) and the CAPD patients.
25
Goodwin (1988) studied the relationship between hardiness and
psychosocial adjustment in a convenience sample of thirty-five patients receiving
dialysis in the Midwest Forty-nine met the criteria, but only thirty-five
volunteered to complete questionnaires. A descriptive correlational design was
used. The mean age of the sample was 55 years (SD = 14). No conceptual
framework was indicated.
Data were collected using the Health Related Hardiness Scale (HRHS), a
demographic questionnaire and Psychosocial Adjust to Illness Scale (PAIS). The
authors stated that validity and reliability data had been previously reported on
the PAIS and the HRHS, but these measures were not reported for this study.
Subjects completed these measures during dialysis and questionnaires were read
to those with poor eye sight.
There were no significant relationships between demographics, (gender,
age, ethnic background, years of education) and hardiness or psychosocial
adjustment However, older subjects reported better social adjustment (r=.23).
There was a modest correlation between perceived wellness and psychosocial
adjustment (r=.32); subjects who perceived themselves as being well reported
fewer psychological adjustment problems.
Gurklis and Menkes (1988) descriptive correlational study was a
replication of Baldrees et al., (1982) earlier study using a larger non-probability
sample. A statistical power analysis with a medium effect size of .30 and a power
of .80 was used to determine a sample size of 68. The researchers explored the
relationship among treatment-related physiological and psychosocial stressors,
coping methods, and length of time on dialysis of chronic hemodialysis patients.
The authors indicated that stress and coping, as described by Monat and Lazarus
(1977), was used as a theoretical framework for explaining these relationships. A
demographic data sheet, the Hemodialysis Stressor Scale (HSS), and the Jalowiec
Coping Scale (JCS) were used to collect data. Cronbachs alpha coefficients
obtained for this study were .90 for the total HSS; .63 for the physiological
subscale; and .89 for the psychosocial subscale; .86 for the JCS total scale; .74 for
the JCS affective coping subscale, and .84 for the JCS problem oriented coping
subscale. Subjects reported from 2 to 32 stressors. The most frequently reported
stressor was feeling tired. Other stressors ranked high were frequent hospital
admissions, sleep disturbance, and limitation of fluids, food, and physical activities.
Additional stressors that were reported were having to follow a dialysis regimen,
multiple illnesses, number of treatments per week, having different nurses,
possibility of death during dialysis, waiting for a transplant, feeling tied to a
machine, increased dependence on others, and a decrease in income.
Gurklis and Menke, unlike Baldree et al. (1982), found small-to-moderate
positive correlations between stressors and coping methods. The total HSS Scale
scores were positively related to the total JCS scores, r=.43, and physiological
stressors were related to affective oriented coping r=.33). Psychosocial stressors
were related to the use of affective coping methods (r = .43), and the use of
problem oriented coping (r = .33). Additional findings showed a small correlation
between length of time on hemodialysis and the use of problem oriented coping
methods, r=.26. Length of time on dialysis also was associated with problem
oriented coping (r = .26). The most frequently used coping methods were
27
(1) prayer, (2) maintaining control, (3) acceptance, and (4) hope.
Chowanec and Brink (1989) investigated the impact of ESRD on marriage
in a sample 102 couples recruited from five hospitals in Canada. They explored
the psychosocial well-being of ESRD patients and their spouses from the
perspective of Marital Role Theory. This cross-sectional study used couples
representing different levels of illness, and different treatment modalities. Subjects
were married for at least six months, could speak English, and were physically
able to complete questionnaires. The investigators used a five group design
consisting of couples with a spouse in one of the following five stages of illness:
(1) patients in a nephrology clinic with non-ESRD health problems, (2) pre
dialysis patients, i.e., patients with chronic renal failure but not yet on dialysis, (3)
home dialysis patients, (4) patients being dialyzed on a hospital dialysis unit, and
(5) patients with a functioning kidney transplant These researchers hypothesized
that where the iDness-treatment intruded the most into the lives of couples, the
higher the levels of marital role strain and psychological distress would be. Marital
Role Theory provided a theoretical framework for explaining the link between
marital adjustment and psychological well-being. Data were collected using a
demographic data sheet, Physical Health Scale, Respect for Partners Scale, Locke-
Wallace Marital Adjustment Test, Marital Role Questionnaire, K-Scale of the
MMPI, Social Network Index, Illness/Treatment Intrusiveness Scale, Global
Rating of Well-Being Scale, role segment of the KDS-15 Marital Assessment
Questionnaire, SCL-90-R, Affect Balance Scale and the Rosenberg Self-esteem
Scale.
Findings indicated that there were no significant differences among the
28
groups in marital relations or psychological well-being. However, the groups with
greater illness-treatment intrusiveness (two dialysis groups) had higher marital role
strain and lower psychological well-being. In addition, dialysis patients were less
likely to be working.
Examination of the relationships among social support, demographic and
situational factors, and compliance to hemodialysis regimen was the focus of
Boyer, Friend, Chilouverakis, and Kaloyanides (1990) study. Data were obtained
from 60 of 64 hemodialysis center patients being dialyzed at two northeastern
hospitals. Four of the 64 patients did not participate because they were too ill or
refused to be interviewed. Data were obtained using structured interviews, self-
report questionnaires, and information from participants medical records. Social
support, age, gender, and length of time on hemodialysis were found to be
significantly related to compliance, as measured by serum potassium, phosphorus,
and blood urea nitrogen levels. The effects of social support disappeared when
age, gender, and length of time on hemodialysis were removed from the
regression equation. Patients who perceived the family and medical staff as
nonsupportive or supportive out of a sense of duty were found to be
noncompliant with respect to potassium. Older patients were more potassium and
phosphorus compliant than younger patients; patients on hemodialysis longer were
more compliant to BUN than newer patients.
Social support was measured in terms of patients perception of emotional
and instrumental support provided by their families and medical staff and family
and medical staff members report of support provided. Questionnaires developed
by the researchers were used to measure social support. Validity and reliability
data were not included.
Gerhardt (1990) used a descriptive qualitative approach (life histories) to
study sixty-eight married men with ESRD and their spouses over a twelve year
period. This sample represented the total population of male patients of working
age (20-50 years), who had been treated up to 3 years for ESRD in England. The
purposes were to explore how patients illness careers (patterns of life overtime)
with ESRD could be identified and to describe their structural make-up. Two
interviewers collected biographical data about medical, occupational, financial, and
family aspects of subjects lives.
Three patterns of behaviors emerged from the data: patterns of division of
labor among spouses (traditional, male-dominated or companionship
relationships), patterns of treatment modalities (dialysis to transplant and return
to dialysis over time) and patterns of marriage or divorce. Socioeconomic status
and age influenced patterns observed with the upper-class families tending to be
traditional families and lower class families tending to be dual career families.
Upper class men were more likely to keep their jobs than were lower class men.
It is conceivable that upper class men were in positions of authority or
occupations in which they could physically continue. Conversely, lower class men
may have had constraints such as supervisors insensitive to changes in their
condition. This group may also have had labor jobs they could no longer endure
physically. Age appeared to be a factor in the type of ESRD treatment received.
Those over 35 years seemed to start out on dialysis, whereas, those 35 and under
tended to receive transplants. Those starting out on dialysis could have believed
their condition was temporary or feared the transplant would fail. However, over
30
time most received transplants.
Limitations of this study included respondents questionable valid recall of
life events over time and the use of interviews where interviewer bias could
influence collection and interpretation of data. In addition, this study was
conducted in the United Kingdom where treatment and financing of treatment
differs from those in the United States. Therefore, findings may have been
different if this study had been conducted in the United States where receiving
hemodialysis in treatment centers is favored over home hemodialysis. The U. S.
Federal Government pays for hemodialysis treatments, and hemodialysis patients
are classified as disabled. Thus, there may be no incentive for patients with ESRD
in the United States to remain employed.
Kutner and Brogan (1990) investigated functioning and psychological
adjustment in a random sample of 42 patients selected from the total population
of patients over 60 receiving dialysis in the Atlanta area. Ages ranged from 60 to
81 years. Length of time on dialysis was from one to sixteen years. Data were
collected by personal interview on demographics, physical complaints, satisfaction
with treatment, perceived available support, perceived control over dialysis,
perceived control over health, self-esteem, depression, and life satisfaction.
Instruments used were: a 7-point rating scale for life satisfaction, perceived
control and psychological affect, a 10-item scale for self-esteem (Rosenberg,
1965), and the Center for Epidemiologic Studies Depression Scale (CES-D) to
measure symptoms of depression. Items on scales were read to subjects during the
interview. No information on reliability or validity were reported. The authors did
provide a list of studies where information on these measures could be found.
31
Findings indicated respondents were receiving hemodialysis or continuous
ambulatoiy peritoneal dialysis (CAPD) either in an outpatient clinic, in their
homes, or in a hospital dialysis unit Home dialysis and CAPD patients were more
satisfied with their treatment than those who received their treatments in the
outpatient clinic. Respondents perceived quality of life (life satisfaction) and
psychological adjustment (psychological affect well being, self-esteem, depressive
symptomatology) were significantly inter-correlated. Those with high life
satisfaction tended to express more positive psychological affect (r=.52), scored
higher on well-being (r=.80) and self-esteem (r=.73) and lower on emotional
distress (r=-.47). Variations in life satisfaction were not related to age, but
respondents who were dissatisfied were less likely to perceive having enough
people or places to turn to for help (perceived support). Physical problems and
limitations, control over their dialysis and their health, marital or family problems,
and living arrangements contributed to lack of life satisfaction.
Littlewood, Hardiker, Pedley, and Oileys (1990) exploratoiy study focused
on how patients coped with tasks associated with hemodialysis. Coping was
defined as a process rather than an event. Data were collected by use of a semi-
structured interview designed to explore issues, tasks and coping strategies. Tasks
of hemodialysis patients included learning how to diatyze, coping with the
unpredictable course of the disease, maintaining self-esteem, developing ways to
deal with recurring emotions such as depression and anxiety, learning how to
explain illness and its treatment to others, adapting to new roles, and dealing with
financial problems. The sample consisted of ten female and ten male dialysis
patients ages 20 to 60. The sample was stratified by age, sex, and type of
32
treatment (hemodialysis versus peritoneal dialysis). Two social workers used a
semi-structured interview to collect data in the respondents homes.
A qualitative analysis of data indicated that all of the respondents used
various coping strategies. Examples of coping strategies used included thinking of
people who were worse off, participating in sporting activities, gardening, and use
of social relationships (patients described support received by others). Perception
of illness was found to be related to coping strategies. For example, respondents
who viewed hemodialysis as temporary coped by thinking of life after dialysis.
Respondents who felt that being on dialysis involved adjusting lifestyles to fit the
dialysis regime coped by doing less, doing what they used to do more slowly, or
developing a new lifestyle around the dialysis regimen. Those who felt that being
on dialysis meant giving up the things they cared about coped by thinking of past
activities they enjoyed, and giving up valued activities. Subjects who were angry
resisted the idea of being on dialysis and believed that their life plans had been
permanently spoiled by their illness. This group used coping strategies such as
expressing hostility toward dialysis equipment, expressing hope for a better future,
and refusing welfare benefits because of stigma attached to welfare. Neither
length of time on dialysis nor type of treatment were related to use of a particular
coping strategy. However, there was a tendency for older respondents to maintain
previous lifestyles, whereas younger people tended to express resentment about
their condition. Women tended to adjust better than men.
Christensen et al. (1992) examined the relationships among family social
support, Alness-related physical impairment, and compliance in 78 of 99
hemodialysis patients being dialyzed at home or in a center. In addition, the study
33
examined whether the beneficial effects of family support were related to direct
or indirect effect as defined by Cohen & Willis (1985); direct effects of social
support meant it would be beneficial irrespective of the presence of stress,
indirect effects meant social support would be beneficial in the presence of
increased stress. Stress was defined as the degree of physical impairment. The
researchers predicted that patients with perceptions of a more supportive family
would exhibit a more favorable adherence to dietary and fluid restrictions.
The Family Relationship Index from Moos & Moos (1986) Family
Environment Scale (FES) that measures family cohesion, expressiveness, and
conflict, was used to measure family support. Cronbachs Alpha (.89) for the FES
and evidence of construct validity were reported by Holahan and Moos (1983).
The physical dimension of the Sickness Impact Profile (SIP) (Bergner et al., 1981)
was used to measures the degree of illness-related physical impairment In this
study by Christensen, et al. (1992) an alpha of .87 for the FES and an alpha of .74
for the SIP were reported. Adherence was measured by degree of weight gain
between hemodialysis treatments and serum potassium (K) levels.
Findings indicated that patients with a perception of a more supportive
family adhered more closely to fluid restrictions than patients reporting less family
support Family support was not related to dietary restrictions (Byrne, 1994); the
hypothesis was partially supported. The effects of social support on adherence to
fluid restrictions indicated a direct effect rather than an indirect effect The effect
of family support was not modified by patients degree of physical impairment
Gurklis (1992) used a cross-sectional correlational design to obtain data
from 129 respondents to explore the relationships among treatment related stress,
34
coping, and perceived social support of chronic hemodialysis patients. In addition,
the researcher examined whether age, sex, education, living arrangement,
transplant status, or months of hemodialysis were related to patients stress,
coping, and social support. The HSS (Baldree, et al., 1982), the JCS (Jalowiec,
1987), the Personal Resource Questionnaire 85-part 2 (Weinert & Brandt, 1985),
and a structured interview were used to collect data.
Findings identified social support, coping, and education as significantly
related to treatment-related stress (R squared =.26). Subjects were likely to
report higher levels of treatment-related stress if they used many coping methods,
had lower levels of perceived social support, and more years of education. Stress,
social support, and age were related to coping (R squared = .34). Subjects were
more likely to frequently use multiple coping methods if they were younger, and
had higher levels of treatment-related stress, and perceived social support
Education, living arrangement stress and coping were found to be related to
perceived social support (R squared = .32).
Kutner and Brogan (1992) compared 349 persons aged 60 or over and
receiving hemodialysis to 354 persons similar in age, race, and gender who were
not receiving hemodialysis. Older patients receiving hemodialysis reported more
functional disabilities than older patients not receiving hemodialysis. They were
also more likely to need health-related aids or services.
Rittman, Northsea, Hausauer, Green, & Swanson (1993) used
Heideggerian phenomenology and a purposive sample of six to study the
experience of patients living with renal failure and hemodialysis. Patients
interviewed had been on hemodialysis from 3 to 14 years. Hermeneutical analysis
as described by Diekelmann, Allen, & Tanner (1989) was used to interpret
meanings imbedded in the interview data. The three themes were taking on a new
understanding of being, maintaining hope, and dwelling in dialysis. The initial
disruptions in daily life were replaced by a normal way of being. Maintaining
hope was a significant way of coping. Viewing the dialysis unit as home was an
example of dwelling in dialysis; some patients viewed the machine as part of
them. Patients wanted to use the same machine, within the same space each time
they were dialyzed. As patients have identified in previous studies, fatigue, and
food and fluid restrictions were major problems in living with renal failure and
hemodialysis no matter the length of time on hemodialysis.
Byrne, Vernon, & Cohen (1994) completed a secondaiy analysis of data
obtained from the Health Care Financing Administration on all Medicare ESRD
patients aged 55 and older (n=95394) who began hemodialysis treatment between
1982 and 1987 in the United States. The purpose of Byrne, et al.s study was to
assess the survival rate for all patients who initiated dialysis at the age of 55 or
older. About 93 percent of all ESRD patients receive Medicare funding. Findings
indicated that the mortality rate of patients increased as age of initiation of
hemodialysis increased. Older patients with diabetic nephropathy seemed to fare
worst; no patient with diabetes was found to survive five years after initiating
dialysis. Thirty-four percent of the patients with hypertension beginning dialysis
between the ages of 55 and 64 years of age were alive five years later. In addition,
the lifespan for the ESRD population was below that for the general population.
These authors suggested that knowledge of survival rates for elderly patients on
dialysis should be helpful to individuals making decisions about their care.
36
Summary
The hemodialysis literature contains a great deal of information on
physiological and psychosocial problems experienced by hemodialysis patients.
Fatigue, fluid restrictions, and dietary restrictions were consistently identified as
stressors (Baldree et al., 1982; Bihl et al., 1988; Gurlis et al., 1988; Rittman, 1993;
Wright et al., 1966). The literature review showed:
(1). Age (De-Nour, 1982), length of time on hemodialysis (Baldree, et al.,
1982; Siegal et al., 1987), SES (education, occupation) (Gerhardt, 1990 ;
Gurklis, 1992; Sherwood, 1983), and social support (Dimomnd, 1979;
Gurklis, 1992) influenced perceived problems/stressors of hemodialysis
patients. Patients who perceived themselves as well reported fewer
psychosocial adjustment problems (Goodwin, 1988). Support from
others helped patients cope with hemodialysis (Littlewood et al., 1990).
(2). An inconsistent relationship between perceived problems and coping.
For example, Baldree et al. (1982) found no relationship between the
two variables; Gurlis et al. (1988) found a moderate relationship, r=.43,
and Gurklis (1992) found a relationship between treatment-related stress
and use of multiple coping methods. Littlewood et al. (1990) found that
perception of illness influenced coping strategy.
(3). A relationship between coping and physiological status indicated by
physical condition and medical complications (Dimond, 1980).
(4). A relationship between coping and psychosocial status as measured by
social functioning and morale (Dimond, 1980).
37
Age (De-Nour, 1982), SES (Sherwood, 1983), and time on hemodialysis
(De-nour, 1982; Goodwin, 1988; Sherwood, 1993), were found to contribute to
social adjustment Social support or perceived social support was positively or
negatively related to depression (Wright et al., 1966), social functioning (Dimond,
1979; OBrien, 1980), physiological status (Olsen, 1983), coping (Littlewood, et al.,
1990), compliance (Boyer et al., 1990; Christensen et al., 1992), and life
satisfaction (Kutner et al., 1990). Additional relationships influencing
psychological status included perceived progress (Dimond, 1980), perceived quality
of life, self-esteem, well being, and psychological affect (Kutner et al., 1990).
Furthermore, patients used various coping strategies and took on new roles in
terms of hemodialysis (Artinian, 1983; Gurlis, et al, 1988; OBrien, 1983).
Maintaining hope was important in living with renal failure (Rittman et al.,
1983).
Stress-adaptation (Dimond, 1980), stress and coping (Gurklis et al. 1988),
Symbolic Interactionism (OBrien, 1980), Crisis Theory (Siegal et al. 1997), and
Marital Role Theory (Chowanec et al, 1989) are examples of conceptual
frameworks used by authors in this review of hemodialysis literature. Grounded
Theory (Artinian, 1983), life histories (Gerhardt, 1990), and Phenomenology
(Rittman, et al. 1993) were three qualitative methods found in this review of
literature.
Social Support
The literature contains diverse definitions and conceptualizations of social
support For example, Cobb (1976) defined social support as information leading
to the belief that one is cared for, loved, and valued and a part of a network.
38
Kahn & Antonucci (1980) defined social support as interpersonal transactions
containing affect, affirmation or aid. The access to and the use of individuals or
groups in dealing with lifes unpredictable change is the way Pearlin, Lieberman,
Menaghan, & Mullan (1981) defined social support Lazarus & Folkman (1984)
described social support as a coping resource; a resource that is present in the
individuals life before the occurrence of stress that help them to cope. House,
Umberson, & Landis (1988) defined social support as the emotional or
instrumental sustaining quality of social relationships. Wethington and Kessler
(1986) describe social support as perceived and received support. Perceived social
support is defined as a perception that one is loved and esteemed by others or the
perception of resource availability. Received social support is defined as the
actual transfer of advice, aid, and affect through interpersonal networks.
Cohen & Syme (1985) described social support as the structure of social
relationships (social networks) and the function that a relationship serves. Wills
(1985) identified esteem, information, instrumental, and social companionship as
types of social support; each with its own function. Similarly, provision of
affection, emotional concern, instrumental aid, or information have been
identified as examples of functional support (Cohen & Syme, 1985; House &
Kahn, 1985). As indicated above and as Dimond & Jones (1983) concluded, after
an extensive review of the social support literature, the definitions of social
support can be summarized into four major definitional categories: support as
relational provisions (e. g., opportunity for nurturanee; reassurance of worth),
information (emotional support, belonging to a network), structure (defined set of
individuals), and interaction (interactions within social networks, reciprocal
39
sharing). Despite definitional diversity, social support is an attribute of social
interactions with family, friends, and significant others.
Social support is considered to be one factor that influences an individuals
appraisal of the significance of a stressor (Gore, 1985; Lazarus et al., 1984;
Stewart, 1989). Social support as a coping resource may prevent the appraisal of a
stressful stimuli as threatening or set constraints on coping responses once a
situation is judged to be a threat (Gore, 1985). In addition, social support has
been found to influence adaptation and health outcomes (Willis, 1985)
After considering the review of literature on social support, social support
was conceptualized in this study as social support network; the structure of social
support. It was defined as individuals (family members or friends) available to
assist respondents if needed. Belonging to a network of individuals who are
available to provide love, affection, and aid when needed was expected to
influence the identification of problems related to hemodialysis by subjects in this
study.
Limitations
Limitations of studies reviewed included the use of non-probability
sampling (Baldree, et al., 1982, Beard, 1969, Bil et al., 1987, De-Nour, 1982,
Dimond, 1979, Gurklis et al., 1988, Reichman, et al., 1972, Wright, et al., 1966),
omission of validity and reliability data on measures used (Kutner et al., 1990,
OBrien, 1979 & 1983, Siegal et al., 1987, Wright, et al., 1966), use of cross-
sectional data (Bihl, et al., 1988, Chowanec, et al., 1989, Christensen, 1992,
Dimond, 1980), use of multiple interviewers (Gerhardt, 1990, Reichman, et al.,
1969), use of a small sample size (Baldree et al., 1982, Bihl, et al., 1988,
40
Christensen, 1992, Dimond, 1979 & 1980, Littlewood, et al., 1990), and use of a
longitudinal study (Gerhardt, 1990, OBrien, 1983). In addition, purposive
sampling (Kutner al., 1990, Rittman, et al., 1993), no specified conceptual or
theoretical framework (Byrne, 1994, Good, 1988, Kutner et al., 1990, Sherwood,
1983), and the use of descriptive designs (Artinian, 1983; Beard, 1969; Denour,
1982; Kutner et al., 1990; Rittman et al., 1993) can also be considered limitations.
Only one study reviewed reported the use of power analysis (Gurlis, 1988). To
overcome some of the weaknesses of previous studies, a theoretical framework,
power analysis, and valid and reliable measures were used in this study.
The theoretical framework provided directions for selections of concepts,
provided a medium to discuss research findings, make findings more meaningful
to other researchers. The use of valid and reliable measures increased the
credibility of the findings. Power analysis was used to help determine adequate
sample size to test the studies hypotheses. This study was an effort to determine
the relationship among age, SES, time on hemodialysis, social support network,
perceived problems, coping, physiological status, and psychosocial status of
hemodialysis patients using a researcher-developed theory derived from the Roy
Adaptation Model (1991).
CHAPTER III
THEORETICAL FRAMEWORK
A mid-range Theory of Coping with Hemodialysis was derived from the
Roy Adaptation Model (RAM) (1991) and used to guide this study. The review of
literature related to hemodialysis patients provides partial support for the
propositions of the theory. This chapter presents an overview of the RAM and the
mid-range theory, including assumptions, propositions, and conceptual, theoretical,
and empirical definitions. Research questions and study hypotheses are also
included.
The Roy Adaptation Model
From its early beginnings in the late 1960s, while Sister Callista Roy was a
masters student, the RAM has evolved over the past thirty-two years. The first
publication on the model appeared in the nursing literature in 1970 (Roy &
Andrews, 1991; Roy & Corliss, 1993). The RAM views the person as an adaptive
system. Three major concepts are stimuli (focal, contextual, and residual), coping
mechanisms, and behaviors (physiological, self-concept, role function, and
interdependence) (Figure 1).
Inputs
Within the Roy Adaptation Model (1991) man is described as a holistic
adaptive system, whose parts are interrelated and function as a whole. This
adaptive system receives inputs, termed stimuli by Roy, from internal and external
environments. Inputs are described as focal, contextual, and residual stimuli.
Together the three classes of stimuli comprise the individuals adaptation level.
41
42
Behavioral responses to these stimuli are deemed to be adaptive or maladaptive.
Figure 1 below depicts the person as an adaptive system as proposed by Roy.
pERSOw
Contextual
and
Focal
Stimuli
. \ / PHYSJO-
LOGICAL^
COPING
MECHANISMS
iwterdeXA
\ penoence!
ROLE A.X
\FUNCTION %
^ aptation
Ineffective
Behaviors
Behaviors
Adaptive
and
Figure 1. The Person as an Adaptive System. Adapted from Roy, C., &
Andrews, H. A.. (1991). The Roy Adaptation Model: The definitive statement,
(p. 17). Norwalk, Connecticut: Appleton, Lange.
Focal stimuli are described by Roy and Andrews (1991) as " the internal
and external stimuli most immediately confronting the individual -- the event that
attracts the individuals attention" (p. 8). For example, the diagnosis of a chronic
illness such as ESRD requiring hemodialysis in order to live may be a focal
stimulus. The individuals perception of the focal stimulus and how she or he
copes with this stimulus are influenced by past experiences with identical or
similar stimuli.
Contextual stimuli are "all other stimuli present in the situation which are
known to contribute to the effects of the focal stimuli" (Roy & Andrews, 1991, p.
9). Contextual stimuli influence the meaning people attach to a situation.
43
Common examples of contextual stimuli include age, SES, family structure,
perception, knowledge and beliefs. For example, a response to being on
hemodialysis may be influenced by ones perception that hemodialysis will
prevent attainment of ones career goals.
Residual stimuli "are environmental factors whose effects in the current
situation are unclear" (Roy & Andrews, 1991, p.9). For example, the fear
associated with a diagnosis of ESRD may be influenced by a fear provoked by a
long ago childhood illness experience such as chicken pox.
The nature of a given stimulus may change, according to Roy and Andrews
(1991). That is, a focal stimulus may become a contextual one or a contextual
stimulus may become a residual one, or vice versa, depending on conditions.
Coping Mechanisms
Coping mechanisms are internal processes which process the input to the
person and evoke behavioral responses to internal and external stimuli (Roy &
Andrews, 1991, p. 13). Coping mechanisms are "innate and acquired ways of
responding to the changing environment" (p. 4). The regulator and cognator
subsystems are components of the coping mechanisms.
Stimuli from the environment serve as input to the persons regulator and
cognator subsystems. The regulator subsystem responds to environmental stimuli
automatically through neural, chemical, and endocrine coping processes. [Inputs to
the regulator play a role in forming perceptions and linking the regulator to the
cognator]. An example of regulator activity is an automatic change in size of the
pupils as a reaction to the amount of light in a room.
The cognator subsystem responds through "cognitive-emotive channels,
44
(1) perceptual/information processing, (2) learning, (3) judgment, and
(4) emotion" (Roy & Andrews, 1991, p. 14). Selective attention, coding, and
memory are within the perceptual/information processing channel. Roy and
Andrews (1991) describe perception as the interpretation of a stimulus. Therefore,
perception provides meaning to what is sensed by a person and links the regulator
to the cognator. Perceptions are influenced by contextual and residual stimuli.
For example, perception of a pain may be influenced by whether pain is
accompanied by other symptoms such as nausea and vomiting. Perception may
also be influenced by past experience with pain.
Learning, another cognator activity, involves insight, reinforcement, and
imitation. Judgment, a third activity of the cognator subsystem, includes the
processes of problem-solving and decision-making. Additionally, through the
cognators emotive channel, emotions that are difficult to deal with may be
avoided by the use of defense mechanisms such as denial.
The regulator and cognator are interrelated. Internal and environmental
stimuli such as physiological, psychological, social, and physical occurrences are
input to the regulator and cognator. These are processed by the regulator and
cognator and result in behavioral responses to them.
Outputs
According to Roys model, behavioral responses to focal, contextual, and
residual stimuli can be observed within four modes of adaptation (Roy &
Andrews, 1991, p. 13). The four modes are physiological, self-concept, role
function, and interdependence. Figure 1 shows how stimuli provoke coping
mechanisms and these, in turn, ideally result in adaptation responses, that is,
45
behaviors which are effective in terms of survival, growth, mastery, and
reproduction.
Behavioral responses are considered to be the outputs of the person, and
result from cognator and regulator processing of stimuli. Behavior is defined as
"internal or external actions and reactions" in all situations, not just those
indicative of health problems (Roy & Andrews, 1991, p. 12). Behaviors can be
adaptive or ineffective. Adaptive behaviors are those that promote the integrity of
the person in terms of the goals of adaptation: survival, growth, reproduction, and
mastery (Roy & Andrews, 1991). Ineffective behaviors are those that do not
promote the goals of adaptation. Judgments about the effectiveness of a clients
behavior can be made by the client or the client and nurse working together.
The actual processing of stimuli by the regulator and cognator may not be
observed directly, but results of their activity (behavioral responses) are observed
within the four adaptive modes: (1) physiological, (2) self-concept, (3) role
function, and (4) interdependence. Behaviors observed in the four modes indicate
cognator and regulator activity within the adaptive process. Each one of the above
adaptive modes is described below.
The physiological mode is the means by which the person responds to
stimuli as a physical being. Behaviors observed in the physiological mode reflect a
persons efforts for oxygenation, nutrition, elimination, activity, rest, and
protection. The goal of behavior in the physiological mode is physiological
integrity.
The self-concept mode focuses on psychological and spiritual aspects of
behavior. It is described as what a person believes or feels about the self at a
46
given time (Roy & Andrews, 1991). A persons self-concept is formed from
internal perceptions and the perceptions of others, and directs human behavior.
The physical self and the personal self are two components of this mode.
Behavioral responses in the self-concept mode are directed toward the goal of
psychic integrity.
The role function mode involves the way a person responds to
environmental stimuli relative to their roles in society. For example, the way a
mother responds to her ciying baby is different than the way a professional would
respond. The mother might pick up the baby tentatively, thinking she is doing
something wrong, while the nurse would assess the baby for some health problem
with the baby. Both the nurse and the mother have learned appropriate ways to
respond in a given situation. The way a person fulfills his or her social roles
provides an indication of the level of social integrity, the goal of behavior in this
mode.
Behaviors indicative of the interdependence mode are those relative to
giving and receiving love and respect. The goal of behavior in this mode is
affectional adequacy. Feeling secure in nurturing relationships is an example of
affectional adequacy. The relationships important to this mode are ones involving
significant others and support systems.
Roy and Andrews (1991) propose that these four modes are interrelated. A
behavior within one mode may act as stimulus for each of the other modes and
thereby affect behavior. For example, a mother hospitalized with ESRD may not
be able to cany out her role as a mother, this may make her feel weak physically,
change the way she feels about herself, and cause her to feel lonely.
47
Feedback
A persons behavior, as the output of the human system, acts as feedback
or further input to the system. This feedback from the initial coping behavior
gives the person a chance to decide whether the initial coping behavior is
sufficient to deal with the focal stimulus. If the initial response is not adequate to
cope effectively with the stimulus, other coping mechanisms are activated to
produce additional responses (Roy & McLeod, 1981). A focal stimulus that a
person can easily manage elicits the persons usual ways of responding to stimuli.
The RAM is a conceptual model and as such cannot be tested directly.
However, because the RAM provided a way to increase understanding of
hemodialysis patients from a physiological, psychological, role function, and
intedependence perspectives, it was selected to guide the development of a
midrange theoiy that guided the study. Empirical indicators for the concepts of
the midrange theoiy were identified and used to test i t Therefore, the RAM was
tested indirectly. The findings of the study will be useful to nurses in research and
practice related to hemodialysis patients. The midrange theoiy derived from the
RAM is described below.
Coping with Hemodialysis: The Mid-Range Theoiy
An interest in how hemodialysis patients cope with the physiological and
psychosocial problems related to hemodialysis led to the idea of developing a
theoiy to explain, predict, and describe how people cope with hemodialysis. A
mid-range theoiy called "Theoiy of Coping with Hemodialysis" (TC-HD) was
developed by the author and tested in this study. Fawcett and Downss (1986)
method of theoiy formulation was used to develop the theoiy. Theory formulation
48
required identifying concepts to be used in the mid-range theoiy, defining them,
and developing propositions linking concepts of the theoiy. The concepts of the
theoiy deduced from each concept of the RAM are: (a) focal stimulus
(hemodialysis), (b) contextual stimuli (age, time on hemodialysis, SES, and, social
support network), (c) cognator (perceived problem and coping), (d) behaviors in
the physiological mode (blood pressure, body weight, and potassium levels), and
(e) behaviors in the self-concept, role function, and interdependence modes
(self-esteem, occupational and home work status, and interactions with family and
extended family). The review of literature, along with knowledge of the RAM and
its assumptions, aided in the selection of the concepts and identified the existing
level of support for relationships among the concepts in the TC-HD. Propositions,
hypotheses, and research questions are stated later in this chapter.
Concepts of the TC-HD
Each concept of the TC-HD is discussed below. The flow of concepts in the
theoiy from the RAM to the TC-HD is shown in a Conceptual-Theoretical-Empirical
Structure (Table 1). Theoretical and operational definitions of the concepts are
depicted in Table 2. Concepts of the RAM were defined earlier in this chapter.
Focal Stimulus
Roy defined the focal stimulus as the stimuli most immediately confronting
a person; the event that attracks the persons attention (Roy & Andrews, 1991). As
indicated in Table 1, hemodialysis was considered to constitute the focal stimulus for
the subjects in this study. It was considered a focal stimulus because patients on
hemodialysis have to respond to its effects daily and it is a constant reminder of their
dependence on medical technology. The literature includes hemodialysis patients
49
Table 1
Conceptual - Theoretical - Empirical Structure
Stimuli Control Processes Behaviors
Conceptual
Models
Concepts
(RAM)
Focal ^Regulator Responses in physiological,
and and Self-concept, role function,
Contextual Cognator and Interdependence Modes
Mid-Range Hemodialysis Perceived
Theory's (Focal Stimulus) Problems
Concepts Age, Time on and
(TC-HD) Hemodialysis, Coping
SES & (Cognator)
Social Support
Network
(Contextual Stimuli)
Physiological Status and
Psychosocial Status
- self-esteem (Self-Concept)
- occupational & work status
(Role Function)
- interactions with family
(Interdependence)
Empirical
Indicators
Statement of
Diagnosis on
Chart &
Information on
Demographic
Data Form
Scores on the
Hemodialyis
Stressor Scale
and the
Jalowiec
Coping Scale
Blood Pressure, Weight, &
Potassium levels on Chart
(Physiological Mode)
Rosenberg Self-Esteem Scale
(Self-Concept Mode)
Psychological Adjustment to
Illness Scales (PAIS):
-Vocational & Domestic
Environmental Scales
(Role Function Mode)
- Social Environment &
Extended Family
Relationships Scales
(Interdependence Mode)
Note. *The regulator was not measured in this study.
50
descriptions of the multiple problems or stressors associated with being on
hemodialysis (Baldree, et al, 1982). Hemodialysis patients must restrict fluid,
protein, potassium and salt intake because unrestricted use of these substances
may lead to life threatening situations and even death. In addition, they must
assess the functional status of their hemodialysis vascular access sites; fistulas or
grafts. Access sites are internal vascular routes formed by joining an arteiy and a
vein or grafting a synthetic material, such as Gortex, to an arteiy and vein. Both
routes increase the patients blood flow through the vessel at a rate required for
effective dialysis treatments. Needles are inserted directly into the access site to
allow the dialysis machine to remove blood for dialysis and return it after dialysis
is complete (Ignatavicius, et al., 1995). One reason for hospitalization of chronic
hemodialysis patients is access related problems such as thrombus formation, and
infection (Jones, 1992).
Peitzman, (1989) suggested that the experience of ESRD patients is
mainly the illness of hemodialysis. Other researchers seem to agree, because nine
of twelve research studies reviewed focused on stressors of, coping with, or
adaptation to hemodialysis (e. g., De-nour, 1982; Gurklis & Menke, 1988); two
focused on responses to ESRD requiring hemodialysis (Beard, 1969; Gerhardt,
1990); and one focused on illness/treatment intrusiveness (Chowanec & Brink,
1989) .
Contextual stimuli
Roy definded contextual stimuli as "all other stimuli in the situation which
are known to contribute to the effects of the focal stimuli" (Roy and Andrews,
1991, p. 9). Age, time on hemodialysis, SES, and social support network were
51
Table 2
Theoretical and Operational Definitions
Concept
Hemodialysis
Theoretical
Definitions
The process of removing
waste products, excess
water, and excess electrolytes
(e.g. Potassium) from the
bloodstreams of persons
diagnosed with ESRD by
means of an artificial kidney
Operational
Definitions
Specific Documentation
that respondents are
receiving hemodialysis
for treatment of ESRD
Age Respondents length
of time since Birth
Specific number of
years since birth
Time on
Hemodialysis
Respondents length of
time since hemodialysis
was initiated
Number of days, months, or
or years respondents have
have been receiving
hemodialysis
SES Respondents social Social status scores calculated
status as reflected using Hollingsheads Index
in their occupation
and education scores
obtained using
Hollingsheads Index
Social Individuals (family
Support members and friends
Network available to assist
respondents if
needed
(table continues)
Number of people listed as
a part of respondents
personal network
Concept
Perceived
Problems
Coping
Physiological
Status
Psychosocial
Status
Theoretical
Definitions
Bothersome/troublesome
occurrences or stressors
related to hemodialysis
Efforts to deal with
perceived problems
Physiological responses
to hemodialysis
Responses to perceived
problems and efforts
to deal with them
- self-esteem, home &
occupational work
statuses & interactions
with family
Operational
Definitions
Scores on the
Hemodialysis Stressor
Scale
Scores on the
Jalowiec Coping
Scale
Blood Pressure, weight,
and potassium levels
recorded on charts
Scores on the Rosenberg
Self-esteem Scale &
Subscales of the
Psychosocial Adjustment
to Illness Scale:
- Vocational and Domestic
Environmental Scales
- Social and Extended
Family Relationships
Scales
53
considered to represent contextual stimuli for the hemodialyis patients in this
study. Results of studies reviewed for this study provided conflicting support for
the relationship between these contextual stimuli and problems identified by
hemodialysis patients. However, the contextual stimuli selected for this studies
have been identified by Roy as common stimuli that influence an individuals
rsponse to a focal stimulus (Roy & Andrews, 1991).
Occupation and education two of the four factors of Hollingsheads (1975)
Four Factor Index of Social Status, were used to measure SES of respondents in
this study. Hollingsheads Index (1975) considers occupation, education, marital
status, and gender as indicators of ones social status. However, occupation and
education are the primary factors in the Four Factor Index (p. 1). The occupation
respondents pursued when employed was graded on a nine-step scale. Education
was described as the years of school completed and was scored on a seven point
scale. Prestige of each occupation and education for the same occupations was
assumed to be similar for males and females. SES score of an individual was
calculated by multiplying the scale value for occupation by five and the scale value
for education by three. Respondents occupation and education was obtained from
the respondents demographic data form.
Cognator
The cognator is one of the internal processes within a person that evokes
behavioral responses to internal and external stimuli. Perceptual/information
processing, learning, judgement, and emotion are four ways the cognator responds
to stimuli (Roy & Andrews, 1991). Perceived problems and coping were
considered to represent cognator activity for subjects in this study. Respondents
54
were asked to identify to what extent they were troubled by each item listed on
the HSS (Baldree et al., 1982) and to select the coping methods listed on the
Jalowiecs Coping Scale (Jawoliec, 1988) they used to deal with problems related
to hemodialysis. According to Randell, Tedrow, and Landingham (1982) coping is
intellectual and emotional responses to stimuli.
Behaviors
Within Roys Adaptation Model human behaviors are seen as the result of
regulator and cognator activities. Adaptive or ineffective behaviors may be
observed within the four adaptive modes: physiological, self-concept, role function,
and interdependence (Roy & Andrews, 1991). Within the theoiy for coping with
hemodialysis "TC-HD", respondents efforts to cope with problems related to
hemodialysis are evident in their physiological and psychosocial statuses.
The physiological mode of the RAM was represented by physiological
status in the TC-HD. With ESRD kidneys have lost their ability to regulate the
concentration of potassium, the most abundant chemical in the bodys cells. As a
result the body retains potassium which leads to hyperkalemia; the most life-
threatening effect of ESRD (Smeltzer and Bare, 1992). The kidneys can also lose
their ability to regulate water balance This leads to increased blood pressure and
weight gain. In this study physiological status was defined as physiological
responses to hemodialysis and was measured as (a) systolic and (b) diastolic blood
pressure, (c) body weight, and (d) potassium levels of each respondent
Self-concept role function, and interdependence modes of the RAM were
considered to be psychosocial status in the TC-HD (see Table 3). In this study
Psychosocial status was operationalized as scores on specific subscales of the
Table 3
Depiction of the Adaptive Modes Within TC-HD
Adaptive Physiological
Modes of
the RAM
Self-concept Role
Function
Modes
In
TC-HD
Physiological
Status
Self-Esteem Home
and
Vocational
Work
Statuses
Empirical B/P, Weight,
Indicator & potassium
Levels
Rosenberg
Self-Esteem
Scale
Domestic
Environ
mental
and
Vocational
SubScales
(PAIS)
Interdependence
Interactions
with family
and others
Social Environ
mental and
Extended
Family
Relationships
Subscales
(PAIS)
56
Psychosocial Adjustment to Illness Scale (PAIS) (Derogatis, 1983). Self-esteem
within the TC-HD was viewed as representative of the self concept mode of the
RAM and was operationalized as scores on the Rosenberg Self-Esteem Scale
(Rosenberg, 1965). The role function mode of the RAM was determined by
occupational and home work status within the TC-HD; work status was measured
by the Vocational and Domestic Environmental Subscales of the PAIS. Within the
TC-HD the interdependence mode of the RAM was indicated by interactions with
family members and others. The Social and Extended Family Environmental
Subscales of the PAIS were used to assess interactions with family members and
others (see Table 3). The proposed relationships between the concepts in TC-HD
are stated below.
Propositions
The following propositions state the relationships among the concepts in
the TC-HD. Figure 2 depicts the TC-HD. Propositions were tested indirectly
through the testing of hypotheses. Hypotheses and research question are
presented following the propositions.
P-la. Age influences perceived problems.
P-lb. Time on hemodialysis influences perceived problems.
P-lc. SES influences perceived problems.
P-ld. Social support network influences perceived problems.
P-2. Perceived Problems affect coping.
P-3. Coping affects physiological Status.
P-4. Coping affects Psychosocial Status.
57
'hysiological Status:
- Systolic B/P
- Diastolic B/P
- Body Weight
- Potassium level
Time on
Hemodialysis
/
Perceived-* Copin]
-Problems
SES
*sychosocial Status:
-Self-esteem
-Vocational Environment
Social Suppoi
Network
-Domestic Environment
-Social Environment
-Extended Family
Relationships
Figure 2. Theoiy of Coping With Hemodialysis (TC-HD)
58
Study Hypotheses
1. There will be a positive relationship between both number of years since birth
(age) and number of years receiving hemodialysis (time on hemodialysis) and
perceived problems, and a negative relationship between both social status
scores (SES) and number of people in personal network (social support
network) and perceived problems.
2. There will be a positive relationship between scores on the Hemodialysis
Stressor Scale (perceived problems) and scores on the Jalowiec Coping Scale
(coping
3. There will be a positive relationship between scores on the Jalowiec Coping
Scale (coping) and systolic and diastolic blood pressure, body weight, and
potassium levels (physiological status).
4. There will be a positive relationship between scores on the Jalowiec Coping
Scale (coping) and scores on the Rosenberg Self-esteem Scale, and the
Vocational, Domestic, and Social Environmental and Extended Family
Relationships Subscales of the Psychosocial Adjustment to Illness Scale
(psychosocial status).
Research Questions
1. What is the contribution of age, time on hemodialysis, socioeconomic status,
and social support network to perceived problems?
2. What is the contribution of perceived problems to coping?
3. What is the contribution of coping to physiological status?
4. What is the contribution of coping to psychosocial status?
59
Summary
In this study a mid-range theoiy of coping with hemodialysis was deduced
from the RAM. This chapter discussed the concepts in the RAM, the concepts
and empirical indicators for the concepts in the TC-HD, and the process used to
deduce the TC-HD from the RAM. In addition, the above hypotheses were tested
and the research questions were answered thereby, indirectly testing the TC-HD.
Research methods used in this study are described in chapter four and results of
statistical analysis are presented in chapter five.
CHAPTER IV
METHOD
Research Design
A non-experimental, cross-sectional, descriptive, correlational design was
used in this study to examine hypotheses derived from a midrange theoiy
developed for this study. In addition, variables in the theoretical model which
were believed to contribute to variance in the physiological and psychosocial status
of hemodialysis patients as noted in the literature were examined. In this study no
attempt was made to manipulate the independent variables.
Setting
After obtaining approval from the appropriate human subjects committee
and hemodialysis centers, the names of potential subjects who met the criteria for
inclusion in the study were obtained from the Director of Nursing at the two
hemodialysis centers. Data were collected from a convenience sample of 127
hemodialysis patients while they were being dialyzed at a community hemodialysis
center located in an urban, southeastern city. All adult patients who had a
confirmed diagnosis of ESRD requiring hemodialysis, were over the age of
eighteen, had the ability to understand and speak English, and agreed to
participate in the study met the criteria for inclusion in the study.
Sample (Description)
Characteristics of the sample are depicted in Table 4 and 5. All subjects
(100%) had diagnosed End stage Renal Disease (100%). Consistent with the
United States renal population, subjects were found to have a prevalence of
60
61
Table 4
Demographic Characteristics of the Sample
Variable Number Percent
Gender
Male
Female
Age(years)
20-39
40-49
50-59
60-69
70 or more
Race
Black
White
Other
Marital Status
61
62
26
22
22
38
19
102
21
4
48
52
21
17
17
30
15
80
17
3
Single 29 23
Married 46
36
Divorced 20
16
Separated 9
7
Widowed
23
18
(Table Continues)
62
Variable Number Percent
Education
< 9th Grade 17 13
9th-11th Grade 33 26
HS Graduate 44 35
Some College 18 14
College Graduate 15 12
Occupation
Laborers 20 16
Unskilled 32 25
Semiskilled 30 24
Skilled/Crafts 14 11
Clerical/Sales 3 2
Tech/Semipro 11 9
Mgrs/Minor Pro 6 5
Admin/Lesser Pro 9 7
Exec/Major Pro 2 2
Employed
Yes 19 15
No 108 85
diabetes mellitus (41%), hypertension (29%), and glomerulonephritis (21%).
Additional factors were analgesic abuse, IgA nephropathy, nephrosclerosis,
multiple myeloma, reflux, and systemic lupus erythematosus. In addition to the
primary cause of their ESRD participants had other health problems including
hypertension (53%), blood dyscrasia (50%), cancer (7%) diabetes (5%), thyroid
problems (35%), or diseases of the cardiovascular (34%), neurological (30%),
gastrointestinal (23%), musculoskeletal (15%), and respiratory (13%) body
systems.
The subjects in the sample were almost evenly divided by sex. Ages ranged
from 26 to 81 years, the mean was 54.5 (SD=13.90. Although the highest percent
were in the 60 to 69 year old range over one half were less than sixty years old.
The majority of subjects were African American (80%), about one third (36%)
were married, the rest (64%) single (23%) or once married and currently without
a spouse (41%). The number of children respondents had ranged from zero to 14.
Participants (96%) identified the Protestant Faith as their religious preference.
Ninety-eight percent of the participants named one or more individuals or pets as
members of their personal network. The number of personal network members
ranged from zero to 11. Most of the participants in this study were unemployed
(85%). Those (64%) who had worked at one time in their lives or who were still
working had jobs classified by Hollingshead (1975) as semiskilled or less. Ten
percent of the sample had jobs classified as higher executives, proprietors, or
major professionals; examples are engineers, college or university teachers, health
administrators, and sociologists.
64
Table 5
Selected Health Related Characteristics
Number of Years on Hemodialysis
Years n % of Sample
< 1 27 21
1-2 37 29
3-4 30 24
5-6 13 10
7-10 2 2
> 10 18 14
Means on Selected Health Status Variables
Variable Mean SD Range of Scores
Number of years on
Hemodialysis 4.2 5.1 0.1 - 23.0
Systolic Blood Pressure 151.9 26.6 94.0 207.0
Diastolic Blood Pressure 81.3 16.1 43.0 - 117.0
Potassium (K+)* Level 4.7 0.8 3.3 - 8.8
Weight gain Since Last
Treatment 2.7 1.4 0.0 - 7.5
Note. *3.5 to 5.5 is the normal range
65
As shown in Table 5 the number of years on hemodialysis for this sample
varied from less than one year to more than 23 years. Eleven (8.8%) participants
had been receiving hemodialysis 14 years or more. The majority (74%) had been
on hemodialysis less than four years. Fifteen (12%) of the sample had received a
kidney transplant in the past and twenty (16%) had used peritoneal dialysis as a
renal replacement therapy.
Participants systolic blood pressure ranged from ninety-four to 207. The
diastolic blood pressures ranged from 43 to 107. The potassium levels of
participants ranged from 3.3 to 8.8; 3.5 to 5.0 mEq/L is the normal range
(Ignatavidus et al., 1995). Participants gained from zero to 7.5 kilograms in a two
day period between treatments. The average weight gain was 2.7 kilograms (5.94
pounds).
Sample Size
For purposes of this study Power Analysis was used to determine sample
size. The conventions for power (.80) and significance level (.05) and effect size as
suggested by Cohen (1977; 1987) were used. The effect size is the degree to which
the phenomenon under study is thought to exist and is measurable in the
population (Cohen, 1988). There is a limited amount of data about how
hemodialysis patients coped with problems related to hemodialysis, therefore, the
effect size for this study was set at a low medium, r=.20 for pearson product
movement and f=.10 for multiple regression.
Pearson products and multiple regression analyses were the statistical tests
used to examine the hypotheses and to address research questions. Kraemer &
Thiemanns (1987) master table (p. 105) for one-tailed test revealed a needed
sample size of 152 for the posited effect size (.20), significance level (.05), and
power (.80). (Cohens (1977; 1987). Using Cohens Sample Size Table 3.4.1 (p.
101) for a pearson product movement correlation showed a sample size of 153:
one more than the master table.
According to Cohen & Cohen (1983) the L table for specific power (.80)
specific significance level (.05), and number of independent variables (K) in the
study (6), plus the formulas f squared equal R squared over one minus R squared
( - f = _ gz. ) and N = L + K + 1 over f squared ( A - ) is used to
determine the appropriate sample size for the F test of the significance of R
square (multiple regression) (pp. 117 & 527). Using this guideline a sample size
of 130 was considered adequate to study the studys hypotheses and detect a low
medium effect size of (.10). One hundred and thirty (130) hemodialysis patients
were contacted to participate, two of these became ill and did not complete all of
the studys questionnaires and one was a part of the pretest.
Measures
Five instruments were used to collect data (Appendix A). A Demographic
Data Form (DDF) developed by this researcher, the Hemodialysis Stressor Scale
(Baldree, et al., 1982), the Jalowiec Coping Scale (Jalowiec, 1988), the Rosenberg
Self Esteem Scale (Rosenberg, 1965) and the Psychosocial Adjustment to Illness
Survey (Derogatis, 1983). Systolic and diastolic blood pressures, body weights, and
serum potassium levels were obtained from hemodialysis patients records.
67
Demographic Data Form
The Demographic Data Form was used to collect data relative to the
demographic variables of age, time on hemodialysis, SES, and social support
network. Respondents race, religion, income, education, employment status,
gender, blood pressure, body weight, and potassium levels were included on the
DDF. Potassium levels were obtained from respondents laboratoiy records.
Potassium is the bodys principle electrolyte of intracellular fluid. The normal
range is 3.5-5 mEq./liter of blood. Normally, 80-90 percent of the cells potassium
is excreted by the kidneys - the most frequent cause of increased levels are renal
failure. A venous blood sample of lOcc is needed for the lab to determine a
persons potassium level. The sample must be examined as soon as possible after
the sample is obtained. Hemolysis in obtaining the sample, opening and closing
the fist ten times with a tourniquet in place, and delay in completing the test will
result in falsely high levels (Fischbach, 1984). For this study no problems known
to the author were encountered relative to collection of blood to determine
potassium levels. Blood pressures, potassium levels and between treatment body
weights were obtained from the participants hemodialysis records and recorded on
the Demographic Data Form.
Hemodialysis stressor Scale
The Hemodiafysis Stressor Scale (HSS) (Baldree, et al., 1982) is a rating
scale containing thirty-two (N=32) items to evaluate patients perceptions of the
incidence and severity of stressors associated with hemodialysis. Items for the
scale were initially obtained from the review of literature and six hemodialysis
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission
68
nurse experts. Respondents are asked to rate each item on a four point scale,
0=not at all, 1=slightly, 2=moderately, and 3=a great deal. Total scores are
obtained by summing responses to all 32 items. Psychosocial subscale scores are
calculated by summing responses to the 25 psychosocial items; and physiological
subscale scores are obtained by summing responses to the 7 physiological items.
Construct validity using factor analysis supports the multidimensional
conceptualization of hemodiafysis stressors (Murphy, Powers, & Jalowiec, 1985).
Reliability coefficients for the original scale of 29 items were .89 for the total
stressor scale, .69 for the physiological subscale, and .88 for the psychosocial
subscale. Test-retest reliability for the scale was .71 (Baldree, et al., 1982). Bihl
et al., (1988) reported an internal consistency reliability coefficient for the current
thirty-two item scale as .80. Gurklis and Menke (1988) reported Cronbachs Alpha
coefficients of .90 for the total scale, .63 for the physiological subscale, and .89 for
the psychosocial subscale. The Cronbachs Alphas obtained in this study were .87
for the total 32 item scale, .56 for the physiological subscale, and .85 for the
psychosocial subscale.
Jalowiec Coping Scale
The 1987 Revised Jalowiec Coping Scale (JCS) (Jalowiec, 1988), is a 60
item self-report coping scale. Respondents rate, on a four-point scale, how often
they used each coping method for an identified stressor and the effectiveness of
each coping method on a four point scale. The 1977 version of the JCS indicated
a dichotomous classification of coping styles as problem-oriented or affective. The
revised scale contains eight coping styles: confrontive, evasive, optimistic, fatalistic,
emotive, palliative, supportive, and self-reliant Confrontive coping involves feeing
up to the problem and problem-solving. The use of avoidant activities indicates an
evasive coping style. An optimistic coping style refers to a positive attitude.
Pessimism and hopelessness reflect a fatalistic coping style. Emotive coping is an
expression of ones emotions or ventilation of feelings. Palliative coping involves
doing something to make oneself feel better, such as smoking. Supportant coping
involves using support systems. Self-reliant coping indicates dependence on ones
self rather than on others to deal with a situation. Twenty-five nurse researchers
familiar with the stress and coping literature agreed with Jalowiecs classification
of the items on the JCS into the above eight subscales (Jalowiec, 1988; 1991).
Jalowiec (1991) reported that Cronbachs Alpha obtained by twelve
different researchers using the 1987 version of the JCS ranged from .64-.97 for
total use, .84-.96 for total effectiveness, and .03-.96 for subscales. This suggests
some of the subscales were not reliable for some groups or subscales. Robinson
(1991) in a study of widows grief responses, coping processes, and social support
reported Cronbachs Alpha for total coping use .92, and for total coping
effectiveness, .90. Alphas for subscales range from .70-.92. A Cronbachs Alpha
Coefficient of .86 for total use was obtained for this study; Alpha Coefficients for
the eight subscales were: confrontive .72, evasive .69, optimistic .63, fatalistic .23,
emotive .56, palliative .45, supportant .49, self-reliant .62. The JCS has been used
to study coping methods of various populations; adults with arthritis, cancer,
kidney failure, and hypertension and with hemodialysis patients (Jalowiec, 1988).
Scoring of the JCS is on a 4-point scale (0-3). Subjects indicated which
70
strategy was used, how often used, and how helpful each strategy was. Raw or
adjusted use scores and raw effectiveness scores for each of the eight coping styles
and the overall scale are obtainable. Raw scores can abe used to compare the
same coping style among subjects and adjusted scores for comparing different
coping styles among subjects. Raw scores range from 0-180 for both scales. In
addition, mean and proportional scores for each coping style may be obtained.
Rosenberg Self-esteem Scale
The Rosenberg Self-Esteem Scale (Rosenberg, 1965) is a ten item scale that
measures overall self-esteem. It has a Coefficient of reproducibility of 92 percent
and a Coefficient of Scalability of 72 percent, indicating satisfactory reliability
(Rosenberg, 1986). In addition, Rosenberg (1965; 1986) reported that the scale
has construct validity. This scale has been widely used and reportedly has
construct validity across diverse samples and an alpha coefficient of .81 (Felton,
1984; Robinson & Shaver, 1973; Waltz & Strickland, 1988). The Cronbachs Alpha
obtained for this study was .82. Items are rated on a "agree-disagree" five point
scale (1-5), higher scores indicate lower self-esteem (Waltz et al., 1988). In this
study scoring was reversed, higher scores indicated higher self-esteem.
Psychosocial Adjustment to Illness Scale
The Psychosocial Adjustment to Illness Scale (PAIS) is a multidimensional
46 item measure used to quantify and assess psychological and social adjustment
of medical patients. The scale evaluates and quantifies psychosocial adjustment in
seven areas of a persons life: health care orientation, vocational environment,
domestic environment, sexual relationships, extended family relationships, social
71
environment, and psychological distress. A PAIS total score indicates overall
adjustment to illness. In a study about renal dialysis patients reliability coefficients
of subscales ranged from .63-.87 (Derogatis, 1986). Interrater reliabilities ranged
from S6-.86 (Derogatis 1986). Powers and Jalowiec, (1987) reported an internal
consistency coefficient of .92 for the overall scale in their study of hypertensive
patients. Similarly, White, Richter, and Fry (1992) reported a high internal
consistency coefficient of .93 for the total scale for their sample of diabetics.
Intercorrelations among subscales were low; .33 among lung cancer patients and
.10 among Hodgkins disease patients (Derogatis, 1986). Cronbachs Alpha for the
total PAIS Scale obtained for this study was .86; Cronbachs Alpha for the five
subscales used in this study ranged from .75 to .81. Data may be collected using
the semi-structured interview version of the PAIS or the self report version PAIS-
SR. The semi-structured interview version was used in this study.
Two registered nurses familiar with the hemodialysis population read each
instrument to determine the feasibility for using them with this population. Both
agreed that the instruments were appropriate. To pre-test the instruments prior to
their use in the study a chronic hemodialysis patient was interviewed. No problem
was encountered in this or subsequent interviews during the data collection phase
of this study relative to content, administration, or ability of respondents to
understand the measures. Participants in this study stated that the questions on
the study instruments included every aspect of a hemodialysis patients life and
that the interview was not too tiring.
72
Procedure
Data were collected by the researcher and two research assistants in two
community hemodialysis centers, after receiving approval from the Behavioral
Investigation Sub Committee of the Human and Animal Investigation Committee
at Wayne State University (Appendix B) and the Director of Nursing at the two
hemodialysis centers (Appendix Q. Data were collected between May 27, 1996 to
September 2, 1996. Subjects that met the studys criteria were approached while
they were at the dialysis center for one of their weekly treatments. They were told
about the purpose of the study and that (a) minimal risks were involved, (b)
refusal to participate would not interfere with the quality of care they received at
the center, and that (c) all information they provided would be confidential.
Those agreeing to participate were asked to read and sign the Informed Consent
form (Appendix D), prior to being interviewed. While each participant was being
dialyzed the researcher or her assistant used the semi-structured interview
technique to complete the Demographic Data Form, the Hemodialysis Stressor
Scale, the Jalowiec Coping Scale and the Psychosocial Adjustment to Illness Scale.
At the conclusion of the interview participants blood pressure, body weight, and
potassium level were obtained from their records.
Human Subjects Considerations
Data were not collected until approval was obtained from the Behavioral
Investigation Committee at Wayne State University and the Director of Nursing
the two Hemodialysis Centers. To ensure the protection of human rights, federal
regulation requires that individuals participating in research studies sign a
73
statement indicating that participation is voluntary. The consent form contained
the researchers name and telephone number that participants could have used if
they had any questions relative to the study. Participants were informed that all
information they provided would be confidential, that their names would not be
placed on the four instruments used and that their consent forms would be stored
separately from their completed questionnaires. In addition all findings would be
reported in aggregate form. Each participant received a copy of the signed
informed consent.
Data Analysis
Data were analyzed using SAS (SAS Institute...l988). Descriptive statistics
were used to determine the central tendency in terms of frequency and variability
among scores for this sample of hemodialysis patients. Correlational analyses were
used to describe the relationship between variables. Multiple regression analysis
and path analysis were used to answer the research questions. Specific data
analysis techniques for each hypothesis, research questions, and overall testing of
the mid range theoiy is in Table 6. The level of significance for all statistical tests
was set at .05. All variables were considered to be at the interval level of
measurement The results of data analysis are presented in Chapter 5.
Summary
One hundred and twenty seven patents from two (2) hemodialysis centers
participated in the study. The data was collected from May 27,1996 to September
2, 1996. Age, number of years on hemodialysis and indicators of physiological
status were obtained by record review. Five instruments, the Demographic Data
74
Form, Hemodialysis Stressor Scale, Jalowiec Coping Scale, Rosenberg Self-esteem
Scale, and the Psychosocial Adjustment to Illness Scale, were used to collect data.
This was done by means of interviews by the investigator and two assistants
during the time subjects were receiving hemodialysis treatment.
75
Table 6
Instrumentation. Alpha, and Statistical Method for Study Hypotheses and
Research Questions
Hypotheses Measure/# of Items Alpha Statistical Method
There will be a # of years
positive relationship old
between age and &
perceived problems HSS/32 .80 - .90 Correlations
There will be a
positive relationship
between time on
hemodialysis and
perceived problems.
# of years
on dialysis
&
HSS/32 .80 - .90 Correlations
There will be a
negative relationship
between SES and
perceived problems.
Hollingsheads
Social Status
Scores
&
HSS/32 .80 - .90 Correlations
There will be a
negative relationship
Number of
people in personal
between social support personal network
and &
perceived problem. HSS/32 .80 - .90 Correlations
There will be a HSS/32
between perceived &
problem and coping. JCS/60
.80 - .90
.64 - .97
Correlations
(table continues)
76
Hypotheses Measure/# of Items Alpha Statistical Methods
There will be a
between coping and
physiological status,
physiological
status.
JCS/60
&
Systolic & diastolic
blood pressures, K+
level, body weight
.64 - .97
Correlations
There will be a
between coping and
psychosocial status
status.
JCS/60
&
Rosenberg
Self-esteem Scale/10
&
PAIS Subscales
-Vocational/6
-Domestic/8
-Social/5
-Extended Family
Relationships/6
.64 - .97
.81
.81
.87
.66
.78
Correlations
Research Questions Statistical Method
What is the contribution of age, time
on hemodialysis, socioeconomic status,
and social support network to perceived
problems?
What is the contribution of perceived
problems to Coping?
What is the contribution of coping to
Physiological status?
What is the contribution of coping
to psychosocial status?
Multiple Regression
Analysis and
Path Analysis
CHAPTER V
RESULTS
This chapter presents the results of the data analysis obtained for this
sample of hemodialysis patients. Findings related to the four hypotheses are
presented, as are the data for research questions 1 through 4. The latter are
plotted on a path analysis. Study findings show the influence of the independent
and mediating variables on the dependent variables in the Theory of Coping with
Hemodialysis (TC-HD).
Tests of Hypotheses
Hypothesis one
Hypothesis one which stated that there would be a positive relationship
between years since birth (age), number of years on hemodialysis (time on
hemodialysis) and scores on the Hemodialysis Stressor Scale (perceived problems),
and a negative relationship between social status scores (SES), number of people
in personal network (social support network) and scores on the Hemodialysis
Stressor Scale (perceived problems) was not supported. Perceived problems were
measured using total and subscale scores obtained from the Hemodialysis Stressor
Scale (HSS). As shown in Table 7, there were a modest and significantly negative
correlation between years since birth (age) and total scores on the HSS
(perceived problems), r = -.20, j> < .05. The number of years on hemodialysis and
the HSS total scores were negatively related, r = -.12. A modest and significant
positive relationship between social status (SES) and HSS Scores (perceived
problems) was found, r = .25, jj < .05, but no relationship between number of
77
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.

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.
Table 7
Pearson r Correlations between Study Variables
Variable Age Social Time
Status on
dialysis
(SES) (Time)
Personal
Network
(PNet)
Perceived
Problem
(PPro)
Cope Self
Esteem
(SelfE)
Psycho
social
status
(Psych)
Systolic
blood
pressure
(SBP)
Diastolic
blood
pressure
(DBP)
K+ WT
gain
(Wtg)
Age X
Ses .07 X
Time -.24* .01 X
PNet -.19* .01 .04 X
PPro -.20* .25* -.11 .01 X
Cope -.22 .19 -.01 -.01 .30* X
SelfE .11 .01 .16 -.02 -.52** -.19* X
Psych .07 .19 -.09 -.08 .75** .32 -.58** X
SBP .09 .01 -.05 -.05 .16 .05 -.11 .09 X
DBP -.17 -.09 -.01 -.01 .08 .01 -.05 .10 .58* X
K+ .03 .13 .09 .13 .08 .01 -.09 .11 .02 .11 X
Wtg -.21 -.05 .10 .10 .03 .01 -.03 -.15 .06 .01 .02 x
Note. Letters ins parentheses are abbreviations for variables. Cope denotes r for total coping. *j> < .05; **p .0001.
79
people in personal network (social support network) and total scores on the HSS
(perceived problems), r = .01 was found. There was a small negative correlation
between the scores on the physiological subscale of the HSS and years on
hemodialysis (time on hemodialysis), r = -.13 and a small positive relationship
between the scores on the psychosocial subscale of the HSS and social status
scores (SES). The means, standard deviations, and range of scores for these
variables are in Table 8.
Hypothesis Two
Hypothesis two which stated that there would be a positive relationship
between scores on the HSS (perceived problems) and scores on the Jalowiec
Coping Scale (coping) was supported. As scores on the Hemodialysis Stressor
Scale increased, total scores on the Jalowiec Coping Scale (JCS) also increased,
r = .30, p < .05. Exploration of the subscale scores indicated significantly positive
relationships. There was a moderate positive relationship between HSS total
scores (perceived problem) and the use of Evasive coping, r = .46, j> <.05) and
Emotive coping, r = .43, j> < .05, on the JCS. There was a weak correlation
between HSS total scores and the use of Fatalistic, r = .27, j> < .05 and Self
Reliant coping, r = .10). There was essentially no relationship between HSS total
scores the Palliative method of coping, r = .02. The means, standard deviations,
and range of scores for the total and subscale scores are in Table 8.
Hypothesis Three
Hypothesis three which stated that there would be a positive relationship
between scores on the JCS (coping) and blood pressure, body weight, and
potassium levels (physiological status) was not supported. No relationships were
Table 8
Means Among Measures of Study Variables
80
Measure M SD Range
Demographics
a. Years old 54.5 13.9 26 - 81
b. Years on hemodialysis 4.2 5.1 . 1-23
c. Social status 28.7 13.4 11 - 63
d. Number in network 3.3 2.3 0 - 11
Hemodialysis Stressor Scale 22.3 14.5 1. 0-67
(Range = 0 to 99)
Jalowiec Coping Scale 94.6 20.9 20 - 135
(Range = 0 to 180)
JCS Subscales
- Confrontive Coping 18.8 6.1 0- 30
(Range = 0 to 30)
- Evasive Coping 13.6 6.7 0 -30
(Range = 0 to 39)
- Optimistic Coping 21.0 4.2 2.0 - 27
(Range = 0 to 27)
- Fatalistic Coping 4.0 2.5 0 - 11
(Range = 0 to 12)
- Emotive Coping 3.5 2.9 0 - 11
(Range = 0 to 15)
- Palliative Coping 8.6 3.5 0 - 16
(Range = 0 to 21)
- Supportant Coping 9.0 3.1 0- 15
(Range = 0 to 15)
- Self-reliant Coping 14.9 4.3 2- 21
(Range = 0 to 21)
(table continues)
81
Measure
M
SD Range
Physiological Measures
- Systolic Blood Pressure
- Diastolic Blood Pressure
- Potassium Level
- Weight Grain
151.9
81.3
4.7
2.7
26.6
16.1
.08
1.4
94 - 207
43 - 117
3.3- 8.8
0 -7.5
Rosenberg Self-esteem Scale
(Range = 10 to 50)
44.8 6.7 20-50
Psychosocial Adjustment to
Illness Scale
(Range = 0 to 54)
12.9 10.4 0- 48
Subscales
- Vocational Environment
(Range 0 to 18)
0.4 1.5 0 -10
- Domestic Environment
(Range = 0 to 24)
3.7 3.7 0- 17
- Extended Family Relationships
(Range = 0 to 15)
1.1 2.0 0- 15
- Social Environment
(Range = 0 to 18)
3.3 3.8 0- 18
Note. Values in parentheses denote possible range of scores on measures.
82
found between total coping scores and the physiological measures of systolic blood
pressure, r = .05, diastolic blood pressure, r = .01), potassium level, r = .01, or
weight gain, r = .003. The means, standard deviation, and range of scores for
these variables are in Table 8.
Descriptive statistical analysis of physiological status indicators found that
participants systolic blood pressures ranged from a low of 94 to a high of 207
(mean 152, SD 26.6); diastolic blood pressures ranged from 43 to 107 (mean 81,
SD 16.1). Potassium levels ranged from 3.3 to 8.8 (mean 4.7; SD 0.8). Participants
in this study gained an average of 2.7 kilograms in body weight over a two day
period between hemodialysis (mean 2.7, SD 1.4)
Hypothesis Four
Hypothesis four which stated that there would be a positive relationship
between scores on the JCS (coping) and scores on both the Rosenberg Self
esteem Scale (RSES) and four subscales of the Psychosocial Adjustment to Illness
Scale (PAIS) (psychosocial status) was partially supported. There was a small
negative correlation between total JCS scores and RSES scores (self-esteem),
r = -.19, p < .05. Participants with higher coping scores had lower self-esteem.
Evasive, Fatalistic, Emotive, and Supportant Coping were also negatively related
to self-esteem. Self-reliant coping was positively correlated with self-esteem,
r = .19, p < .05. There was a moderate positive statistically significant
relationship between total coping scores on the JCS and the total scores on the
PAIS, r = .33, p < .05). The more coping methods used, the less well the
participants in this study were thought to be adjusted (high scores on the PAIS
indicated poor adjustment). Analysis of subscale scores on the JCS and PAIS
83
indicated a statistically significant positive relationships between three out of
eight coping methods and three out of five PAIS subscales. The pearson
coefficient for the relationship between emotive coping and domestic environment
was, r = .26; between emotive coping and social environment, r = .21. There was
a small correlation between fatalistic coping and social environment, r = .25.
Evasive coping was low to moderately related to (a) domestic environment
r = .25, (b) extended family relationships r = .24, and (c) social environment
r=.41. Additional results from the analysis of data on the HSS, JCS, RSES, and
PAIS are discussed below.
Hemodialysis Stressor Scale fHSS)
On the Hemodialysis Stressor Scale participants identified multiple
stressors. Table 9 lists the 10 highest ranked problems identified by this sample.
Respondents considered a decrease in social life to be moderately bothersome,
14%, arterial and venous sticks, 13%, muscle cramps, 13%, itching, 12%, and loss
of body function, 6%, were each considered to be moderately bothersome
problems. Physical limitations, 27%, a change in body appearance, 26%, limits on
fluids, 26%, feelings from treatment, 24%, limits on food, 23%, decrease in sexual
drive, 21%, and frequent hospital visits, 16%, represented problems that bothered
this sample of hemodialysis patients a great deal.
Feeling tired was identified as a moderate problem by 22 percent of
participants. However, 25 percent of the sample identified feeling tired as
bothering them a great deal. Fatigue has been identified as a problem by
hemodialysis patients since the 1960s (Wright et al., 1966; Baldree et al., 1982;
OBrien 1983; Bihl, 1988; Rittman et al., 1993). Changes in family responsibility
84
Table 9
Ten Highest Ranked Problems on the Hemodialysis Stressor Scale (HSS1
Rank Problem Mean
1 Feeling Tired 1.52
2 Physical Limitations 1.31
3 Muscle cramps and soreness 1.20
4 Limitations of fluids 1.17
5 Feelings from treatment 1.13
6 Limits on vacation 1.01
7 Itching .94
8 Limitation of foods .98
9 Arterial and venous sticks .92
10 Change in body appearance .88
85
was not a bother for 71% of the participants. The mean score on the HSS for
participants in this study was 22.3 (SD = 14.5). Scores ranged from 1 to 67. (see
Table 8). In comparison Gurklis, (1992) sample of 129 reported a HSS mean
score of 31.43 (SD = 17.12); scores ranged from 2 to 74. The highest possible
score on the HSS was 96.
When asked to identify additional problems related to hemodialysis, twenty
nine participants added at least one problem that was not among the 32 on the
HSS. Forty-one percent (41%) of respondents rated an additional problem
as bothering them a great deal. Just being on dialysis, not being able to participate
in sports, not being able to go on a three week vacation, not being able to shop,
having to sit still, the confinement three days a week, the hours, the closeness of
others on dialysis, having dialysis compound symptoms, my blood pressure
dropping, not being able to plan, and having to much fluids taken off at one time
are examples of additional stressors identified by the hemodialysis patients.
Jalowiec Coping Scale (JCS)
Consistent with previous findings (Baldree et al., 1982, Gurklis et al., 1988,
Gurklis, 1992) participants used a variety of coping methods as identified by the
Jalowiec Coping Scale. Coping methods used by participants included worried
about the problem, talking problem over with others, expected the worse,
accepted the situation, day dreamed about a better life, kept feelings to
themselves, and waited to see what would happen. Tried to keep a sense of
humor and prayed or put trust in God were two of the most commonly used
coping methods for this sample. Table 10 contains the ten most often coping
methods used by this sample.
86
Table 10
Ten Highest Ranked Coping Methods Identified on the Jalowiec Coping Scale
Rank Coping Mean
1 Prayed or put trust in God 2.82
2 Keep life normal as possible 2.73
3 Tried to think positively 2.70
4 Tried to think of good things in life 2.65
5 Try to keep control of the situation 2.61
6 Tried to keep feelings controlled 2.61
7 Tried to see good side 2.58
8 Tried to keep a sense of humor 2.57
9 Tried to handle problem one step at a time 2.50
10 Look at problem objectively 2.43
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Forty members of this sample added coping methods they used that were
not on the Jalowics Coping Scale. Listening to music, call some one on the
phone, take it one day at a time, give it to god, play golf, talk to kittens ("you
know they love you"), read a scripture, sing a Christian song, wait on the lord,
depend on god, sleep on the problem, deal with the problem, look at soap operas,
and talk to my sister and the lord, and just dont worry, were examples.
Rosenberg Self-Esteem Scale (RSES)
Total scores on the Rosenberg Self-Esteem Scale ranged from 20 to 50
with a mean of 44.8 (SD = 6.7. The highest possible score on the RSES was 50,
with higher scores indicating better self-esteem. Most strongly agreed with the
items on the RSES that asked if they had many good qualities, 84%, and could
they do things as well as others, 66%. Eighty nine percent, 89%, strongly
disagreed with the statement on the scale, I feel basically no good, 60% strongly
disagreed with the statement, I feel useless at times and 78% strongly disagreed
with the statement, I wish I had more respect for myself.
Psychosocial adjustment to Illness Scale (PAIS)
Data analysis of the PAIS indicated that this sample was "adjusting well".
Participants indicated that they communicated well with their immediate and
extended families. Leisure activity was important and the relationship with family
members had improved since they had been receiving hemodialysis. However, 66
percent of participants felt that their physical appearance had changed since being
on hemodialysis, 35 percent had felt sad or depressed recently, and 39 percent had
some degree of anxiety. The mean score on the PAIS was 12.9 (SD 10.4) which
indicated that for this sample few had problems adjusting to being on
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hemodialysis (see Table 8).
Theory of Coping with Hemodialysis
Path analysis was used to answer research questions related to testing of
the theoiy of coping with hemodialysis (TC-HD). In Figure 3 standardized
multiple regression coefficients represent the path coefficients and the strength of
the relationship between the variables on the paths. Testing of a model involves
solving the functional equations for each path, determining whether the
relationships were significant, and computing a regression equation (Ferktish &
Verran, 1990). Testing of the TC-HD involved regressing the variable, perceived
problem, on the four exogenous variables, then regressing the coping variable on
perceived problem, followed by regression of psychosocial status on coping, and
finally, the regression of physiological status on coping. There was no evidence of
multicoilinearity among the four exogenous variables in the model.
Research Question One
Research Question 1 asked, What is the contribution of age, time on
hemodialysis, socioeconomic status, and social support network to perceived
problems? These exogenous variables contributed 13% of the variance in
perceived problems. Older participant seemed to have fewer problems. As the
number of years on hemodialysis (time on hemodialysis) increased, scores on the
HSS (perceived problems) decreased. As social status (SES) increased scores on
the HSS (perceived problems) increased. Results indicated that number of people
in the personal network (social support network) contributed nonsignificantly to
the variance in perceived problems.
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Subscales:
Time on
Hemodialysis
Social Support
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30
Perceived / ..30 ,Coping
Problems (JCS)
(HSS)
Coping
Subscales:
Fatalistic
Evasive
Self-Reliant
Palliative
Physiologica1
Status:
A Systolic BP
Diastolic BP
Potassium
Level
Body Weight
Psychosocial
Status;
Self-Esteem
(RSES)
Psychosocial
Adjustment To
Illness Scale
_____(PAIS)
PAIS Subscales:
Vocational
Environment
Social
Environment
q Domestic
Environment
Extended Family
Relationships
Ficmre 3. Path Analysis Model of the Theory of Coping with Hemodialysis (TC-HD)
03
VO
90
Research Question Two
Research question number two asked, What is the contribution of
perceived problems to coping? Perceived problem, using HSS total scores,
explained 9% of the variance in total scores on the JCS (see Table 11). Using
only the subscale scores of the HSS and JCS indicated perceived problems did not
contribute significantly to the variance in the use of confrontive, optimistic,
palliative, and self-reliant coping. However, perceived problems was positively
Table 11
R Squares for Predicting Total and Subscale Coping From Perceived Problems
Coping R-Square
Total .09*
Confrontive .01
Evasive .21**
Optimistic .02
Fatalistic .07*
Emotive .18*
Palliative .00
Supportant .07*
Self-Reliant
.01
Note. *p < .05, **g = .0001
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related to use of evasive, fatalistic, emotive, and supportant coping. Perceived
problems explained 53% of the variance in the use of these four coping methods
by this sample.
Research Question Three
Research Question number three asked, What is the contribution of coping
to changes in physiological status? Results of path analysis indicated that total
coping scores were not significantly related to the physiological variables of
systolic and diastolic blood pressures, potassium levels, and body weight gain.
Overall, the same results held true for coping subscales scores. However,
optimistic coping explained 7% of the variance in systolic blood pressure.
Supportant coping was related to potassium (k+) levels, explaining 10% of the
variance. A higher use of supportant coping indicated an increase in k+ levels or
vice versa. Weight was not related to coping scores.
Research Question Four
Question number four asked, What is the contribution of coping to
psychosocial status? Total coping scores from Jalowiecs Coping Scale (JCS)
contributed 4% to the variance in scores on the Rosenberg Self Esteem Scale
(RSES). Subscale scores of the JCS contributed 31% of the variance in the scores
on the RSES. Evasive, fatalistic, and self-reliant coping were the three methods
contributing most to the variance in self-esteem. There was an inverse relationship
between evasive and fatalistic coping and self esteem and a positive relationship
between self-reliant coping and self esteem. Respondents with higher self-esteem
used more self-reliant coping and less evasive and fatalistic coping. Confrontive
and optimistic coping were positively related to self-esteem.
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Twelve percent of the variance in total scores on the PAIS were accounted
for by coping. Over all, coping subscales scores were not related to vocational and
extended family subscales scores. Evasive coping explained 12% of the variance in
the extended family and domestic environment subscales of the PAIS. Evasive and
palliative coping explained 23% of the variance in the social environment subscale
scores. Respondent who used evasive coping were less well adjusted than those
who used palliative coping. Additional analysis of subscale scores and the
psychological distress subscale of the PAIS indicated that evasive and emotive
coping scores contributed 46% of the variance in the psychological stress subscale
scores. As scores on the evasive and emotive coping subscales increased,
psychological distress scores on the PAIS increased indicating respondents who
used these coping methods were coping less well. The coping subscales accounted
for more of the variance in outcome variables than the total scores.
Summary of Findings
Testing of hypotheses in this study indicated support for Hypothesis two
which stated there would be a positive relationship between scores on the HSS
(perceived problems) and scores on the JCS (coping). Their was partial support
for Hypothesis four which indicated that there would be a positive relationship
between coping and psychosocial status. Hypotheses one and three was not
supported. There was a negative instead of a positive relationship between both
number of years since birth (age) and years on hemodialysis (time on
hemodialysis) and scores on the HSS (perceived problems) and a positive instead
of a negative relationship between social status (SES) and scores on the HSS
(perceived problems). The number of people in respondents social network
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(social support network) indicated practically no relationship to scores on the HSS
(perceived problems).
Respondents reported multiple problems related to hemodialysis and
used multiple coping methods to deal with these problems. Feeling tired was
the number one problems for hemodialysis patients and trust in god was
the number one coping method used.
Testing of the relationships among the variables in the Theoiy of Coping
with Hemodialysis indicated that the exogenous variables of age, time on
hemodialysis, SES, and social support net work contributed to the variance in
perceived problems, perceived problems were related to total coping, and total
coping was related to self-esteem and psychosocial status, but not to the
physiological status indicators. However, coping was related to self-esteem, systolic
blood pressure, potassium levels and the social environment.
CHAPTER VI
DISCUSSION
The purpose of this study was to examine the ability of the midrange
Theoiy of Coping with Hemodialysis (TC-HD) deduced from Roys Adaptation
Model (Roy & Andrews, 1991), to describe the relationships among the concepts
of age, time on hemodialysis, socioeconomic status, social support network,
perceived problems, coping, physiological status and psychosocial status of
hemodialysis patients. The discussion section compares and contrasts the
Hypotheses and model testing findings with those of earlier works. Implications
for theoiy development, practice and future research are presented.
Findings related to hypotheses testing
Hypothesis one
Age (years since birth) and time on hemodialysis (years on hemodialysis)
were not found to be positively related to perceived problems (scores on the HSS)
as hypothesized for this sample of hemodialysis patients. Nor did the findings in
this study indicate an inverse relationship between SES (social status) and social
support network (number of people in personal network) and perceived problems
(HSS). These findings are inconsistent with those from previous studies. For
example, Denour (1982) found that patients over age fifty reported more
problems in their social life than patients between the ages of 30 and 49. Findings
from Kutner et al.,s (1992) comparative study of hemodialysis and non
hemodialysis patients over age 60 indicated that older patients receiving
hemodialysis reported more functional disabilities than older patients not
94
95
receiving hemodialysis. The major differences between these studies was the
comparisons of ill and ill subjects in the former study and ill and healthy
older patients in the latter.
Baldree et al. (1982) studied 38 hemodialysis patients and found that those
on hemodialysis for less than one year reported fewer stressors than patients on
hemodialysis more than four years. Gurklis (1992) found no significant
relationship between months on hemodialysis and hemodialysis stressor scores.
As the length of time on hemodialysis increase patients may identify additional
stressors or they may learn to cope more effectively with those they have. Major
differences between the above studies and this study were the ethnic/racial make
up of the sample, and the stressor respondents ranked the highest
Dimonds (1979) study of 36 patients on hemodialysis found that subjects
with the availability of a confident identified fewer changes in social functioning.
Findings from Gurklis (1992) study of 129 hemodialysis patients indicated that
lower levels of perceived social support were related to increased hemodialysis
stressors. A major difference between these studies and this study was the use of
different instruments to measure social support.
Gurklis (1992) reported findings consistent with some of the findings from
this study. Age was negatively related to hemodialysis stressors and years of
education were positively related to total scores on the hemodialysis stressor scale.
Older patients may be better able to cope or more experienced in coping with
chronic health problems than younger patients. It is possible that the more
educated person may have a life style with more demands than the lifestyle of the
less educated person. Incongruity among findings of the above studies could be a
96
function of sample size. A small sample size may be inadequate to detect
differences or relationships that exist Results from this study was more consistent
with those of studies with larger sample sizes (Gurklis & Menke, 1988; Gurklis,
1992).
African Americans comprised 80% of the 127 subjects in this study in
comparison to 43% of Gurklis (1992) subjects. The mean age for both
studies was similar Gurklis (56 years; SD 15.3); this study (54.5 years; SD 13.9).
Subjects in this study were more evenly divided between male (61%) and female
(62%) than Gurklis sample of 55% male and 45% female. Ninety six percent of
the subjects in this study reported they were protestant versus 70 percent of
Gurklis sample. The three highest ranked stressors on the HSS reported by
Gurklis subjects were (1) limits on fluids, (2) limits on physical activity, and (3)
feeling tired. In contrast, the three stressors on the HSS ranked highest by
subjects in this study were (1) feeling tired, (2) physical limitation, and (3) muscle
cramps and soreness. Coping strategies for these two samples of hemodialysis
patients also differed. Gurklis subjects ranked (1) taking medication, (2) keeping
a sense of humor, and (3) trying to think positive as the coping methods on the
JCS most often used to cope with hemodialysis. Taking medicine was the least
often coping method on the JCS used by subjects in this study; praying/putting
trust in God was the number one way of coping, keeping life as normal as possible
and trying to see the good side of a problem were the second and third most
often used coping method by subjects in this study. These contrasting results could
be attributed to ethnic/racial identity, primary problem identified, effectiveness of
coping method used, personal experience with hemodialysis, gender, religion or
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other unidentified lifes event
Hypothesis two
Perceived problems (HSS scores) were found as posited to be related to
coping (JCS scores) in this study. These findings were consistent with those of
Gurklis and Menkc (1988), Gurklis (1992), and Littlewood et al., (1990), but
unlike the findings of Baldree et al., (1982). Gurklis (1992) found that
hemodialysis stressor scores were positively related to emotive, fatalistic,
confrontive, and self-reliant subscales scores. In this study HSS scores (perceived
problems) were positively related to emotive, fatalistic coping and supportant
coping subscales scores of the JCS. Prayer, a supportant coping method, was the
number one way of coping for this sample. Surprisingly, supportant coping was
related to increased hemodialysis stress. Respondents reported that prayer was a
very helpful coping method. Perhaps another indicator of supportant coping was
the cause of increased hemodialysis stress or prayer was not as effective a coping
method as these respondents believed. Moreover, these result may be indicative of
the individuality associated with problem identification and coping.
Baldree et al., (1982) found no relationship between hemodialysis stressor
scores and coping scores. However, Gurklis et al., as stated above found a
relationship between hemodialysis stressors and coping when they replicated the
Baldrees et al., study using a larger sample. Baldree et als sample may have been
to small to detect a relationship between hemodialysis stressors and coping.
Hypothesis three
In this study coping was found to be positively related to some aspects of
physiological and psychosocial status and not to others. This pattern of
98
relationships between coping and outcomes is congruent with the findings of
Dimond (1979) who found a positive relationship between type of coping and
fewer changes in social functioning, increased morale, stability of physical
condition and fewer medical complications for a sample of 37 hemodialysis
patients. In this study self-reliant coping scores were positively related to self
esteem (RSES scores), and evasive coping scores were positively related to
extended family relationships, domestic environment, and social environment
subscale scores (higher scores equal poorer adjustment). Patients who used
evasive coping were less well adjusted within these domains of psychosocial
adjustment Palliative coping scores were negatively related to social
environmental subscale scores. Respondents who used palliative coping methods
were better adjusted (lower scores equal better adjustment). Optimistic coping
scores were positively related to higher systolic blood pressures and supportant
coping was positively related to higher potassium levels. De-Nour (1982) found a
wide range of responses on the PAIS subscale measuring a change in leisure
activities. As in this study responses ranged from the same level of interest since
before being on hemodialysis to limited or no current participation or interest in
leisure activities.
Findings related to a Theoiy of Coping with Hemodialysis
To reiterate, within the Roy Adaptation Model (1991), man is described as
a holistic adaptive system who receives inputs described as focal, contextual, and
residual stimuli from the internal and external environment. Coping mechanisms
(the cognator and the regulator) are internal processes which process the stimuli
to the person and produce behavioral responses that can be observed within the
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physiological, self-concept, role function, and interdependence modes of
adaptation. A problem in the physiological mode acts as a stimulus for behavior in
all the other modes. Roy and Andrews (1991) describe perception as the
interpretation of a stimuli and links the regulator to the cognator. Perceptions of
a focal stimuli are influenced by contextual and residual stimuli. With in the
TC- HD hemodialysis was considered the focal stimulus because hemodialysis
patients have to respond to its effects daily and have a constant reminder of their
dependence on medical technology. Age, time on hemodialysis, socioeconomic
status, and social support network were considered to be contextual stimuli; the
RAM and the review of literature influenced the selection of contextual variables.
Roy and Andrews (1991) identified socioeconomic status, family structure, age
(developmental stage), education, skills and experience with a stimulus as
examples of contextual stimuli. Additional stimuli that are contextual will become
evident as individuals are assessed.
Perceived problems and coping in the TC-HD represented the cognator
aspect of the coping process in the RAM. The behavioral modes of the RAM are
represented in the TC-HD by physiological status, self-esteem, and psychosocial
status.
Path analysis was used to address the research questions, thus testing the
relationships among the concepts in the theoiy of coping with hemodialysis.
Results of path analysis indicated partial support for the propositions and
relationships posited in the TC-HD, and indirectly supports the relationships
among the concepts in the RAM. Age, time on herhodialysis, socioeconomic
status, and social support netwdrk contributed 13% of the variance in scores on
the HSS (perceived problems). However, the number of people in respondents
personal network (social support network) did not add to a significant change in
perceived problems. Scores on the HHS contributed 9% of the variance in total
coping, 21% in evasive coping, 18% in emotive coping, and 7% in the variance of
both fatalistic and supportant coping. Total coping contributed to 4% of the
variance in scores on the RSES and 12% in the variance of the total PAIS scores.
Evasive, fatalistic, and self-reliant coping contributed to 31 percent of the variance
in scores on the RSES. Evasive and palliative coping explained 23% of the
variance in the social environment subscale of the PAIS. Coping did not
contribute to the variance in vocational environment and physiological status as a
whole. However, optimistic coping explained 7% of the variance in systolic blood
pressure and supportant coping explained 10% of the variance in potassium levels.
No studies were found that used the RAM as a coping framework to study
the hemodialysis population. Nor were any studies found that used the same
contextual, intervening, and outcome variables and instruments in a single study as
those used in this study. Therefore, the ability to compare the present findings
with previous findings was limited.
Findings from previous studies using the RAM as a conceptual model from
which to study nonhemodialysis populations indicated partial support for the
relationship between contextual stimuli and the coping process, and between
coping process and outcome variables in the RAM. Robinsons (1995) study of
widows during their second year of bereavement found a moderate relationship
between social support/social support network, using Norbecks Social Support
Scale, and coping process. Perceived social support explained 18% of the variance
101
in coping and the grief response. Unlike Robinsons stuffy, social support network
in this study was not found to contribute to a variance in coping (cognator
activity). It is possible that the perceived social support variable defined as
information leading a persons believe that he/she is cared for, loved, and valued
and a part of a network (Cobb, 1976) rather than the use of the network variable
which numbered the persons an individual was connected to would have
contributed to the model. Studies of perceived social support have shown a strong
relationship between this factor and coping (e.g. Gurklis, 1992; Kerley, 1993) and
social support has been identified as a coping strategy within Lazaruss (1984)
Stress and Coping Model. In the current study social support network was not
conceptualized as a direct link to the coping aspect of the cognator, possibly
adding perceived social support to the model would have produced such a link.
Frederickson, Jackson, and Strauman (1991) studied the role of perception
and physiological and psychosocial adaptation in 45 cancer patients using the
RAM as a theoretical framework. The focal stimulus was cancer. Their findings
indicated a positive relationship between perception of symptoms that represented
the cognator and the outcome variable psychosocial adaptation. Similarly, results
of Pollocks (1993) study of 597 patients with one of four chronic illnesses as the
focal stimulus (multiple sclerosis, arthritis, hypertension, and diabetes) indicated
that perceived level of disability was related to psychosocial adaptation but not to
physiological adaptation. The fact that the aforementioned studies and current
study found that patients responded to a physiological stimulus within the
psychosocial modes provides beginning support for the way Roy describes the
relationships among the modes.
102
Frederickson et al. and Pollock used a different concept (perception of
symptoms/perceived level of disability) than that used in the current study to
represent the cognators direct effect on an outcome variable, they found no
relationship between cognator activity and the physiological outcomes of physical
symptoms experienced by patients, laboratory values, and absence of
complications. In this study optimistic and supportant coping was two example of
cogoator activity; optimistic coping contributed to 7% of the variance in systolic
blood pressure and supportant coping contributed to 10% of the variance in
potassium levels. These differing outcomes may indicate that more valid and
reliable measures were used for this study or a need to explore additional
variables to determine physiological outcomes. The results of Federickson et al.
and Pollocks studies could be related to the way patients with physiological
conditions unlike hemodialysis patients respond to stimuli. Different findings may
be obtained when these studies are replicated using the same instruments and
design with a sample of hemodialysis patients.
Implications for Future Research
Results from this study adds to the body of knowledge about an African
American hemodialysis patient population in one locale. In comparison to other
studies of the hemodialysis population, this studys sample were 80% African
Americans. Forty three percent of Gurklis (1992) sample of 129 hemodialysis
patients was African American. Twenty three percent of Kerleys (1993) sample
of 147 hemodialysis patients was African American. Blake and Courts (1996)
study of gender and coping styles of 30 hemodialysis patients reported that 60
percent or 9 members of their sample were African American. Similar to this
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study, Blakes et al., study was conducted within the southeastern United States.
Nursing research studies are needed to address the special needs of this
population and to discover nursing interventions that could lead to a reduction in
the number of African Americans who are requiring hemodialysis and a reduction
in the number of health related problems they are dealing with. African American
comprise only about 12% of the United States population makeup about 35% of
those requiring hemodialysis. In the county were data were collected African
American comprise 34% of the population a nearly three times the national
average (K. Markovics, personal communication, January 10,1997). The goal of
nursing research is to examine problems people within all culture groups are
experiencing related to chronic illnesses such as ESRD, discover how they are
coping, and develop and test interventions that can reduce the number of stressors
and improve their ability to cope with chronic illness.
A survey by Hoffart (1995) to describe the nature of research performed
by Nephrology Nurses indicated that few studies used a theoretical model or path
analysis. In addition, studies used inadequate sample size, and did not present
operational definitions, nor indicate validity and reliability for their instruments.
This study is a beginning effort to address these methodological limitations.
Implications for Theory Development
This studys results supports the development and testing of a midrange
theoiy deduced from the RAM. Path analysis of the relationships among the
concepts in the theoiy of coping deduced from the RAM indicated partial support
for the posited relationships in the TC-HD and indirectly supported Roys
description of the relationships among concepts in the RAM. Contextual stimuli
104
in the theoiy of coping with hemodialysis (age, time on hemodialysis, SES, and
social support network) were related to cognator activity (perceived problems)
and cognator activity (coping) were related to behaviors in the four modes
(physiological status and psychosocial status). Contextual stimuli in the TC-HD
explained 13% of the variance in cognator activity (perceived problem). Cognator
activity (coping) explained 16 % of the variance in indicators of psychosocial
status but not physiological status. However, subscale scores of the JCS
contributed to a variance in physiological status. Optimistic coping explained 7%
of the variance in systolic blood pressure and supportant coping contributed to
10% of the variance in potassium levels. In addition, perceptual information
processing (perceived problem) and decision making, judgement, and emotions
(coping) all cognator activities were found to be related. Perceived problems
explained 9% of the variance in coping. Additional data analysis indicated that
predicting psychosocial status by combining the variables indicating cognator
activities in the TC-HD, HSS scores (perceived problems) and JCS (coping),
explained 40% of the variance in self-esteem and a variance in PAIS subscales
scores; 26% of the variance in domestic environment, 20% of the variance in
extended family relationships, and 37% of the variance in social environment.
These results provided further support for the relationship between cognator and
behavioral outcomes posited in the RAM.
Contextual stimuli in the theoiy of coping with hemodialysis influenced
hemodialysis patients perception of the focal stimuli (hemodialysis). However,
the effects of the focal stimulus on perceived problem was not included in the
TC-HD. Additional variance in perceived problems may have been explained if a
105
measure of the focal stimulus had been included in this study. Measurement of
the focal stimulus (hemodialysis), replication of this study, use of subscales on the
JCS, use of a different definition and measure of social support, and the use of
additional physiological indicators, are suggestions for further development and
testing of the TC-HD. In addition, researchers may test hypotheses derived from
the TC-HD to determine the feasibility of using this theoiy to study coping with
other types of acutely or chronically ill individuals such as pneumonia, cancer,
AIDS, and lupus.
The Roy Adaptation Model was found to be an adequate model to use for
development of a midrange. Development and testing of midrange theories add to
the scientific base of nursing knowledge on how individuals cope with ESRD
requiring hemodialysis. In addition, using the RAM to deduce a midrange theoiy
allow researchers to study physiological and psychosocial perspectives of coping
will illness or other life situations.
Implications for Practice
The findings of this study suggest implications for nursing practice. No
previous study was found that determined the relationship among contextual
stimuli, perceived problems, coping, and physiological and psychosocial
status of hemodialysis patients in one study. Therefore, testing of the TC-HD
is expected to contribute to the development of a body of scientific knowledge
on how hemodialysis patients perceive and cope with their illness.
Nurses can use the fact that hemodialysis patients in this study had
multiple chronic illnesses, identified multiple problems related to hemodialysis,
and used multiple coping methods to deal with them to develop comprehensive
106
nursing care plans and clinical pathways to guide the nursing care of these
complex patients in hemodialysis centers, acute care setting, patients homes, and
long term care. In addition, problems and coping methods identified by patients in
this study can be added to assessment tools used by agencies. Assessing all
patients with tools that include social support availability, problems from every
aspect of a persons life and coping methods they use will enhance the nurses
ability to identify problems patients are having, plan strategies, intervene early to
solve or decrease the severity of problems, and explore additional coping
strategies.
Patients who had higher social status in this study tended to have more
problems than patients from with low socioeconomic status. An implication of this
result for nurses is not to assume that individuals with high economic or social
status are coping better than patients with low incomes. In addition, the demands
could be higher on individuals with higher SES than those with lower SES.
The social support network was not found to significantly influence the
number of problems identified by respondents in this study. Ninety eight percent
of respondents in this study listed one are more persons as part of their personal
network; 1.6% included their pet as a part of that network. Respondents reported
they coped by talking about their problem with family and friends seldom (18%),
sometimes (34%), often (32%); talking with nurses, physicians, or other
professionals often (27%), sometimes (35%), seldom (13%). However, 16%
reported that they never coped by talking to family or friends, 25% never coped
by talking over their problems with professionals. These findings indicate that the
majority of respondents coped in part by talking over their problems with family,
107
friends or professionals and that having a personal network does not automatically
indicate patients are using that support Nurses at the dialysis centers should be
aware that they are a source of support for a large number of their patients and
nurses have a golden opportunity to use the time they spend with these patients
weekly listening to their concerns and using their collaborative role to help
patients to cope. Nurses should also use strategies to determine why some patients
never discuss their concerns with professionals and remember that pets are a
source of support for some patients.
Prayer/trust in God was the number one way of coping for this sample.
Jalowiec (1988)classifies this coping method as supportant To enhance coping
efforts nurses should be supportive and respectful of patients' spiritual beliefs and
rituals.
Summary
The findings from this study indicated that this sample of hemodialysis
patients reported multiple problems, used multiple coping methods, coped by
talking with family, friends, and professional, and use of prayer and trust in god.
Frequently assessing hemodialysis patients to identify problems they are having
and coping methods they are using will provide nurses with valuable information
to plan and intervene to meet the needs of these patients.
Limitations
One limitation of this study was that all data were collected at one point in
time therefore changes in problems or coping over time were not captured. It can
be expected that focal, contextual, and residual stimuli change in an individuals
environment. A longitudinal study would have provided the opportunity to
108
observe a change in problems selected, coping, and physiological and psychosocial
outcomes of hemodialysis patients over time. Data collection could began when
hemodialysis treatments are initiated and continue yearly to capture changes in
social support, SES, and health status at different time frames when patients are
coping with hemodialysis as their health changes.
A second limitation of this study was the use of a non random sample of
hemodialysis patients. When nonprobability sampling techniques are used, unlike
probability sampling, each element of the population does not have the same
chance of being selected to participate in the study (Bums & Groves, 1993). Since
all hemodialysis patients did not have an equal opportunity to participate in this
study this increases the chance that the sample selected was not representative of
the hemodialysis population. Hemodialysis patients who volunteered to participate
in this study may have differed on some characteristic, such as problems,
coping, SES, and social support, from those who did not volunteer. Sampling bias
introduced by nonprobability sampling that result in nonrepresentative samples
poses threats to internal and external validity. The effects of the independent
variables in this study may have been due to some characteristic of this sample the
researcher was not aware of, such as low blood pressure during hemodialysis.
Findings of this study may be generalizable to this sample only and not to the
target population of hemodialysis patients.
A third implication is that respondents identified additional stressors on
the Hemodialysis Stressor Scale and additional coping strategies on the Jalowiec
Coping Scale suggesting that these scales as designed may not be adequately
capturing these variables. Future researchers need to examine this more carefully
109
and additions and subtractions of items to the respective scales considered.
Authors of both of these scales request that researchers using their scales send a
copy of the results so changes can be made, if necessary. Researchers have an
obligation to do so in order to increase the number of valid and reliable scales for
data collection.
Lastly, the use of the interview technique to collect data was considered a
limitation for this study. Since interviews are a form of self-report researchers
have to assume that the information respondents provide is accurate thus, in this
study it was assumed that patients provided accurate data about their problems,
coping, social support, and other study variables. Even though an effort was made
to conduct interviews in the same manner from subject to subject there is the
possibility when this technique is used that interviewer verbal and nonverbal
behaviors such as changing body position, frowning, raising an eyebrow, or smiling
may alter respondents replies. In addition, using the interview required more of
the researchers time than mailing questionnaires would have required.
Researchers should consider these limitations when planning future studies testing
the Theoiy of Coping with Hemodialysis developed for this study.
Conclusion
In this study, a midrange theoiy of coping with hemodialysis (TC-HD) was
deduced from the Roy Adaptation Model (RAM) using Fawcett and Downs
(1986) method of theoiy formulation. The concepts in the TC-HD are age, time
on hemodialysis, SES, social support network, perceived problems, coping,
physiological status and psychosocial status. Age since birth, years since initiation
of hemodialysis, social status, number of individuals in personal network,
110
Hemodialysis Stressor Scale, Jalowiec coping Scale, Rosenberg Self-esteem Scale,
and the Psychosocial Adjustment to Illness Scale were empirical indicators for the
concepts in the TC-HD. A non-experimental, cross-sectional, descriptive,
correlational design was used to examine hypotheses derived from the TC-HD.
Data were collected from a convenient sample of 127 hemodialysis patients by the
author and two research assistants using the interview technique and five
instruments. Correlation, multiple regression, and path analysis were used to
examine relationships in the TC-HD. Study findings provided support for some of
the relationships posited in the TC-HD and the RAM, thus adding credibility to
the RAM and its ability to guide the development of midrange theories. In this
sample hemodialysis patients reported multiple problems related to hemodialysis
and used multiple coping methods. The highest ranked problems for this sample
was fatigue and the coping method used most often was prayer/trust in God;
perceived problems were positively related to coping. In addition, respondents
who used fatalistic, emotive, and supportant coping methods had low self-esteem;
those who used evasive coping methods were less well adjusted, and those who
used optimistic coping had higher systolic blood pressures. Findings from this
study adds scientific knowledge about how hemodialysis patients cope. Replication
of this study is needed using other hemodialysis patients and other chronically ill
individuals to determine if similar results will be found.
Appendix A
Permission Letters and Instruments
111
112
Code#_____
Demographic Data Form
Sex: Male_______ Female_____
Age________
Race: Black_________ White_ Hispanic____ Other_
Ethnic (Cultural) Group: Native American_ American Mexican
Asian_______African_____ Irish__German Italian______ Other_
Marital Status: Single Married Divorced Separated___
Education:
Patient<6 7 8 9 10 II 12 13 14 15 16> 16
Spouse
Number of children__
Occupation: Current_ Previous Retired_____
Currently Employed? Yes No_______
Primary Diagnosis________
Secondary Diagnosis______
Additional Diagnoses______ _________ _________
Number of years on hemodialysis Transplant: Yes No__
Peritoneal dialysis: Yes No_______
Religious Preference: Protestant _ Catholic Jewish Other,
*PcrsonalNctwork
First Name or Initial Relationship
From Norbecks Social Support Questionnaire
BP________ K+ level__________ Weight.
The University of Illinois
l l l v at Chicago
Department of Medical-Surgical Nursing (M/C 802)
College of Nursing
845 South Damen Avenue. 7th Floor
Chicago. Illinois 60612-7350
(312) 996-7900
September 9, 1993
Ms. Dorothy Burns
P.O. Box 14143
Greensboro, NC 27415
Dear Ms. Burns:
Thank you for your interest in the Hemodialysis Stressor Scale. I have
enclosed a copy of the scale for you. Total scores are calculated by
summing responses to all 32 items; psychosocial subscale scores are
calculated by summing responses to the psychosocial (PS) items; and
physiological subscale scores are calculated by summing responses to the
physiological (P) items.
We also have developed and tested a CAPD Stressor Scale, which matches the
Hemodialysis Stressor Scale as closely as possible. I f you would be
interested in this scale, please let us know.
There is no charge for use of the Stressor Scale. You have our permission
to use the Stressor Scale for your research. In return, i f you do use the
Stressor Scale and publish an article(s) reporting the findings, we ask
that you send us a copy.
I f I can be of further assistance, please do not hesitate to contact me.
I wish you much success with your research.
Sincerely,
Carol Estwing Ferrans, PhD, RN
Assistant Professor
Chicago Peoria Quad-Cities Umana-Champaign
Pwmeo on 100% r a c y o e a m p t
| The University of Illinois
at Chicago
Department of Medical-Surgical Nursing (M/C 802)
College of Nursing
845 South Damen Avenue, 7th Floor
Chicago. Illinois 60612-7350
(312) 996-7900 Fax: (312) 996-4979
March 13, 1997
Ms. Dorothy Bums
P.O. Box 14143
Greensboro, NC 27415
Dear Ms. Bums:
You have my permission to include a copy of the Hemodialysis Stressor Scale in the final copy of
your dissertation.
Congratulations on the completion of your dissertation study. I wish you much success in your
future career.
Sincerely,
Ci
Carol Estwing Ferrans, PhD, RN, FAAN
Associate Professor
Chicago Peoria Quad-Cities Uroana-Cnampaign
P'WWOon 1Q0N ' cyoec MO*'
115
Code#_____
HEMODIALYSIS STRESSOR SCALE
People view the dialysis treatment in many ways. Some people find pans of the treatment
bothersome, others do not.
To what extent are you troubled by the following things. In the spaces provided, please
circle the appropriate number.
Example: (1) If the room temperature troubles you a great deal, then circle number 3. If
the room temperature troubles you moderately, you would circle number 2,
etc.
Not at A Great
________________________________________ AJ1______Slightly Moderately Peal
1. arterial & venous stick 0 I 2 3
2. nausea & vomiting 0 I 2 3
3. muscle cramps/soreness 0 1 2 3
4. itching 0 1 2 3
5. length of treatment 0 1 2 3
6. stiffening of joints 0 1 2 3
7. feeling tired 0 1 2 3
8. loss of body function 0 1 2 3
9. decrease in social life 0 1 2 3
10. limitation of food 0 1 2 3
11. limitation of fluid 0 1 2 3
Copyright 1984 Maijorie J. Powers
1
Not at
All
1
A Great
Slightly Moderately Deal
12. interference with job 0 1 2 3
13. decrease in sexual drive 0 1 2 3
14. limitation of physical activities 0 1 2 3
15. sleep disturbances 0 I 2 3
16. changes in family responsibilities 0 1 2 3
17. reversal in family role with spouse 0 1 2 3
18. reversal in family roles with
children
0 1 2 3
19. uncertainty about future 0 1 2 3
20. changes in body appearance 0 1 2 3
21. limited in styles of clothing 0 1 2 3
22. cost of treatment/transportation
to treatment/or other cost factors 0 1 2 3
23. transportation to and from the unit 0 1 2 3
24. limits on time and place for
vacations
0 1 2 3
25. frequent hospital admissions 0 1 2 3
2
117
Not at A Great
All Slightly Moderately Deal
26. dialysis machine and/or equipment 0 1 2 3
27. dependency on nurses and
technicians
0 1 2 3
28. dependency on physicians 0 I 2 3
29. fear of being alone 0 1 2 3
30. feelings related to treatment
(example:
feeling cold)
0 1 2 3
31. boredom 0 1 2 3
32. decreased ability to have children 0 1 2 3
Other 0 1 2 3
3
PERMISSION FOR USE OF JCS
PERMISSION IS HEREBY GRANTED TO
Dorothy Burns
TO USE THE JALOWIEC COPING SCALE
IN A STUDY OR PROJECT
ANNE JALOWIEC, RN, PHD
LOYOLA UNIVERSITY OF CHICAGO
June 23, 1993
119
JALOWIEC COPING SCALE
**A description and two examples of items within each one of the eight coping
styles on The 1987 Revised Jalowiec Coping Scale*:
1. Confrontive Coping Style: 10 items
- confront the situation, face up to the problem, constructive problem-solving
a. Tried to find out more about the problem
b. Set up a plan of action
2. Evasive Coping Style: 13 items
- evasive and avoidant activities used in coping with a situation
a. Put off facing up to the problem
b. Tried to ignore or avoid the problem
3. Optimistic Coping Stvle: 9 items
- positive thinking, positive outlook, positive comparisons
a. Hoped that things would get better
b. Tried to think positively
4. Fatalistic Coping Style: 4 items
- pessimism, hopelessness, feeling of little control over the situation
a. Expected the worst that could happen
b. Told yourself that you were just having some bad luck
5. Emotive Coping Stvle: 5 items
- expressing and releasing emotions, ventilating feelings
a. Got mad and let off steam
b. Worried about the problem
6. Palliative Coping Stvle: 7 items
- trying to reduce or control distress by making the person feel better
a. Ate or smoked more than usual
b. Tried to keep busy
7. Supportant Coping Stvle: 5 items
- using support systems: personal, professional, spiritual
a. Talked the problem over with family or friend
b. Prayed or put your trust in God
8. Self-Reliant Coping Stvle: 7 items
- depending on yourself rather than others in dealing with the situation
a. Told yourself that you could handle anything no matter how hard
b. Preferred to work things out yourself
* Copyright 1987 by Anne Jalowiec, RN, PhD. **Examples published by
permission from the author (Personal Communication, March 12, 1997).
120
ROSENBERG SELF-ESTEEM SCALE
For each of the statements I read, please tell me how much you agree or
disagree with the following statements, based on how you feel about yourself right
now. The choices are 1 = STRONGLY DISAGREE, 2 = SOMEWHAT
DISAGREE, 3 = NOT SURE, 4 = SOMEWHAT AGREE, 5 = STRONGLY
AGREE.
a. I have a positive attitude about myself 1 2 3 4 5
b. Sometimes I think Im no good at all. 1 2 3 4 5
c. I feel I have a number of good qualities. 1 2 3 4 5
d. I dont feel that I have much to be proud of. 1 2 3 4 5
e. Im able to do things as well as most people. 1 2 3 4 5
f. I feel useless at times. 1 2 3 4 5
g. I feel that Im basically no good. 1 2 3 4 5
h. I wish I could have more respect for myself. 1 2 3 4 5
i. All in all, I feel that I am a failure.
1 2 3 4 5
j. I feel that Im not important to others.
1 2 3 4 5
Leonard R. Derogatis, PhJD, President
Maureen F. Derogatis, MJLS., Vice President
Clinical P sychometric Research. Inc.
July 22, 1993
Ms. Dorothy Burns
P.U. Bos; 14143
Greensboro. NC 27415
Dear Ms. burns:
1 am enLlObinu our inf ormatio-i uatkc-i or; tht_- F--.yctiosoc.i ul
Ad lustmci it to 11i uess Scaiu (PAIS/. InLiudt-U is asample.- ot the
Sel f heport. We do have an lntt-r vu-i version which yuu may
request i f you feel t his would better suit your needs.
Permission to use the instrument is inherent with the purchase of
the materials. Acomplete price li s t i n o arid order form is also
included tor your convenience.
If you have any further questions, pi east- feel tree to contact
our office.
Li iicerel >,
ueann>- Mel oni
B i a p O l I n i t lCll I UOEM
P.O. Box 619 Rider-wood, MD21139 Tel. (301) 321-6165
The PAIS-PSYCHOSOCIAL ADJUSTMENT TO ILLNESS SCALE
is Copyrighted material and was not published at the request of the author.
Copyright 1975, 1983 by Leonard R. Derogatis, Ph. D.
Appendix B
Human Subjects Approval
123
124
HUMAN INVESTIGATION COMMITTEE
loom 2238 Gcxdon H. Scott Hall
540 E. Canfiold Avonwo
Wayn* State University
Multipie Project Assurance # M 1261
IRBB03
Detroit. Ml 48201
Phone: (313) 577-1428
FAX: (313) 577-1 Ml
MEHOONDTJM
TO: Dorcthv Bums, Nursing
?.C. Box 14143
Greensboro, North Carolina 27415
'ROM:- Peter A.
Chairman ehavicral Investigation Commi
chtenberg, Ph.D.
& & L (A
f i i ' Q
SUBJECT: Exemption Status of Protocol H 02-91-96 (B03)-X; A
Study of Coping with Ssmodialysis: A Mid-Range Theory
Deduced from the Roy Adaptation Model"
The research proposal named above has been reviewed and found to
qualify for exemption according to paragraph #2 of the Rules and
Regulations of the DeDartment of Health and Human Services, CFR
Part 46.101(b).
Since I have not evaluated this proposal for scientific merit
except to weigh the risk to the human subjects in relation to
potential benefits, this approval does not replace or serve in
place of any departmental or ocher approvals which may be required.
This protocol will be subject to annual review by the BIC.
cc: Dr. Virginia Hill Rice-366 Cohn Building
SOURCE C? FUNDING: No Funding Requested
DATE: April 2 96
125
Room 2238 Gordon H. Scott Hall
540 E. Canflold Avonuo
Detroit. Ml 48201
Phono: (313) 577-1628
FAX: (313) 577-1941
MEMORANDUM
TO:
FROM:
SUBJECT:
DATE:
The following requested changes to the above protocol have been
reviewed and approved for immediate effect:
1) Receipt of minor modifications to the proposed data collection
procedure sent in directly by the PI on April 23, 1996.
This protocol, as amended, will be subject to annual review in
April. 1997.
H-AMENMO.DOC
Dorothy Bums, Nursing
P. 0. Box 14143
p.
estimation Committee f t
Peter A. Lichtenberg, Ph
Chairman, Behavioral Investigation
Approval of Amendments #01 to Protocol #H 02-91-96(B03)-
X;
Title; A Study of Coping with Hemodialysis: A Mid-Range
Theory Deduced from the Roy Adaptation Model
EXEMPTION GIVEN ON: April 23. 1996: Source of Funding
No Funding Requested
June 19, 1996
Wayne State Univenity
Multiple Project Assurance # M 1261
(RB B03
126
Wayn* State University
Multiple Project Assurance # M 1261
IRB B03
Room 2238 Gordon H. Scott Hall
540 E. Canfield Avenue
Detroit. Ml 48201
Phone: (313) 577-1428
FAX: (313) 577-1941
MEMORANDUM
TO:
FROM:
SUBJECT:
Dorothy Bums, Nursing
P. O. Box 14143
, Ph.D. $ 6 % f y 'E *
Investigation Committee / f
Peter A. Lichtenberg
Chairman, Behavioral
Approval of Amendments #02 to Protocol #H 02-91-96(B03)-
;
Title; A Study of Coping with Hemodialysis: A Mid-Range
Theory Deduced from the Roy Adaptation Model
EXEMPTION GIVEN ON: April 23. 1996: Source of Funding
No Funding Requested
DATE: July 9, 1996
The following requested changes to the above protocol have been
reviewed and approved for immediate effect:
1) Receipt of a letter of support and permission from the Director
of Nursing, Bonawell Dunnington, for the above PI to conduct her
research proposal at the Greensboro Kidney Center; sent in on
behalf of the PI on June 26, 1996.
This protocol, as amended, will be subject to annual review in
April. 1997. .
H-AMENMO.DOC
Appendix C
Director of Nursing at Hemodialysis Center Approval Letter
127
128
M M Dialysis Services Division
1 1 I I I w National Medical Care. Inc.
Bio-Medical Applications Of South Greensboro
2031-C Martin Luther King Drive
Greensboro. NC 27406
(919)271-8178
Mar ch 29, 1996
Do r ot hy Bur ns , RN
Do c t o r a l St ud e nt @
Wayne S t a t e Un i v e r s i t y
Col l ege of Nur s i ng
P. O. Box 14143
Gr e e n s b or o , NC 27415
Dear Mr s. Bur ns ,
We woul d l i k e t o be a p a r t of your s t udy "Copi ng wi t h
He mo d i a l y s i s . " BM\ Sout h Gr e e n s bo r o and Bob J e s s u p ,
Ad mi n i s t r a t o r have a gr eed t o a l l o w you and a t r a i n e d a s s i s t a n t
t o c o l l e c t d a t a a t our c e n t e r .
We a l s o u n d e r s t a n d t h a t t h i s s t u d y i s b e i n g p e r f or me d i n
c o n j u n c t i o n wi t h your Do c t o r a l S t u d i e s at Wayne S t a t e Un i v e r s i t y .
At t h e c ompl e t i on of t he s t u d y we woul d g r e a t l y a p p r e c i a t e b e i ng
a l l o we d t o s h a r e i n t he r e s u l t s of t he s t udy.
Pame 1a D. Mims , RN
Di r e c t o r of Nur s i ng
129
Written permission to conduct study at The Greensboro Kidney Center was
mailed directly to Dr. Peter A. Lichtenberg, Chairman of the Behavioral
Investigation Committee at Wayne State University by the Director of Nursing
Mrs. Bonawell Dunnington (See Appendix B).
Appendix D
Informed Consent Form
130
131
Code # _____
Informed Consent
A study of Coping with Hemodialysis
PI: Mrs. Dorothy Bums, RN, MSN
I am being asked to participate in a nursing study to determine how people
deal with being on dialysis. I understand that information obtained in this study
will be used to improve patient care in the future. I understand that I will be
asked to answer questions on four questionnaires about problems I have with
dialysis, how I deal with these problems, and how being on dialysis has affected
my life. In addition, I understand that I will be asked to answer a number of
questions about my life andmy health in general. I will answer all questions during
two of my three weekly visits to the dialysis center. The questionnaires will be
completed on day one while I am having dialysis at the center and should take
about one and one half hours to finish. All other questions will be answered on
day two and should take about thirty minutes of my time. Therefore, the study
should require no time from me other than while I am at the dialysis center. I
understand that some information such as, my body weight, potassium level, and
blood pressure will be taken from my medical record.
. There are no added risks from my participation in this study.
. My decision to participate will not affect my care at the dialysis center.
. All information is confidential and my identity will not be revealed.
. My participation is voluntary.
. I am free to withdraw my consent and to discontinue my participation in the
study at any time without explanation.
. I understand that I may refuse to answer any questions that are upsetting to me.
. Any questions I have about the study will be answered.
. In addition, I understand that I can contact Mrs. Dorothy Burns at
(910) 275 - 0152 if I have any questions about the study.
Page 1 of 2
132
Code #
A Study of Coping with Hemodialysis
. In the event of injuiy resulting from the research, no reimbursement,
compensation, or free medical care is offered by Wayne State University or the
dialysis center.
. The Behavioral Investigation Committee (BIC) and its Chair, Dr. Peter A.
Lichtenberg, can be reached at (313) 577 - 5174 if I have any additional
questions regarding my rights as a research subject
. I will receive a signed copy of this consent form.
I have read or had read to me all the above information about this research study.
The content and meaning of this information has been explained and is
understood. All my questions have been answered. I hereby consent to take a part
in the study.
Participants Signature Date
Principal Investigators Signature Date
Principal Investigators Copy
Participants Copy
Page 2 of 2
Appendix D
Permission to Publish Figure 1 - 3 from Roy, C., & A. Heather. (1991).
The Roy Adaptation Model: The Definitive Statement. Norwalk, Connecticut:
Appleton & Lange.
133
134
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Simon s Schuster
International and Business Sc Professional Group
107 Elm Street. P.O. Box 120041
Stamford, CT 06912-0041
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Lange division o f Simon &. Schnsrer Pnhlishmg.
Permission is grnw*t 1 0 your research confirming that the material i s question is origina] to oar
icxl Permission is gnmtw< on a non-exclusive, one-time only or life of an edition basis, with distribution
rights throughout the world. The permission is subject to the use of a credit line that most include the
name of the author, title of the book, edition, copyright holder (Appleton & Lange), and year of
pnMiratinn The credit line must appear on the same page where our text or illustration will appear.
Thank yon for your inquiry regarding obtaining permission to reproduce material owned by Appleton &
Also, since permission granted is subject to author approval, write to:
Fee for this project is ~Q
If you have any other questions, please let me know.
Sincerely,
End.
A V I A C O M c o m p a n y
135
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References
Artmian, B. M. (1983). Role identities of the dialysis patient. Nephrology Nurse.
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ABSTRACT
COPING WITH HEMODIALYSIS: A MID-RANGE THEORY
DEDUCED FROM THE ROY ADAPTATION MODEL
by
MAY 1997
ADVISOR: Dr. Virginia Rice
MAJOR: Nursing
DEGREE: Doctor of Philosophy
The purpose of this study was to examine the ability of the mid-range
Theoiy of Coping with Hemodialysis deduced from Roys Adaptation Model
(Roy & Andrews, 1991) by the author, to describe the relationships among the
concepts of age, time on hemodialysis, socioeconomic status, social support
network, perceived problems, coping, physiological and psychosocial status of
hemodialysis patients. Age since birth, years since initiation of hemodialysis, social
status, number of individuals in personal network, Hemodialysis Stressor Scale,
Jalowiecs Coping Scale, Rosenbergs Self-esteem Scale, and the Psychosocial
Adjustment to Illness Scale were empirical indicators for the concepts in the
Theoiy of Coping with Hemodialysis.
A non-experimental, cross-sectional, descriptive, correlational design was
used to examine hypotheses derived from the mid-range theoiy. The sample was
composed of 127 hemodialysis patients. Correlation, multiple regression, and path
analysis were used to examine relationships in the Theoiy of Coping with
144
14 5
Hemodialysis. Two of four hypotheses were supported by he data. Hypothesis two
which stated there would be a positive relationship between scores on the
Hemodialysis Stressor Scale (Perceived Problem) and scores on the Jalowiec
Coping Scale (Coping) was supported. There was partial support for Hypothesis
four which indicated that there would be a positive relationship between scores on
the Jalowiec Coping Scale and scores on the Psychosocial Adjustment to Illness
Scale (psychosocial status). Self-Reliant Coping scores was positively correlated
with scores on the Rosenberg Self-Esteem Scale. Respondents reported multiple
problems related to hemodialysis and used multiple coping methods. The highest
ranked problems for this sample was fatigue and the coping style most often used
was prayer/trust in God. Respondents who used evasive coping styles were less
well adjusted. Testing of the relationships among the variables in the Theoiy of
Coping with Hemodialysis indicated support for the posited relationships in the
mid-range theoiy thus, adding credibility to the Roy Adaptation Model and its
ability to guide the development of mid-range theories. Replication of this study is
needed using other hemodialysis patients to determine if similar results will be
found.
AUTOBIOGRAPHICAL STATEMENT
NAME:
EDUCATION:
HOSPITAL
POSITIONS:
LECTURER/
ASSISTANT
PROFESSOR:
PROFESSIONAL
ORGANIZATIONS:
PUBLICATION:
Dorothy Priscilla Bums
A.D.N., Brooklyn College, Brooklyn, New York, 1962
B.S.N., North Carolina A & T State University,
Greensboro, North Carolina, 1975
M.S.N., University of North Carolina at Greensboro,
Greensboro, North Carolina, 1980
Staff Nurse - Columbia Presbyterian Medical Center,
New York, New York
- New York University Hospital,
New York, New York
- Brooklyn Jewish Hospital,
Brooklyn, New York
- L. Richardson Hospital,
Greensboro, North Carolina
- St. James Nursing Home
Greensboro, North Carolina
North Carolina A & T State University, School of
Nursing, Greensboro, North Carolina
American Nurses Association
North Carolina Nurses Association, District 8
Sigma Theta Tau International, Mu Tau Chapter
Chi Eta Phi Sorority Inc., Sigma Chi Chapter
Central Carolina Black Nurses Council, Inc. of the
National Black Nurses Association, Inc.
Bums, D., & Henry, C. (1997). Application
of the Roy Adaptation Model: African American
Females with Lupus Erythematosus. JOCEPS. 44 (1),
17-23.
146

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