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The Gerontological Society of America
The Cerontotogist
Vol. 40, No. 1, 53-63
This study examines three categories of disease-related stressors (i.e., physical, cognitive,
psychosocial), differential coping, and mental and physical health outcomes in individuals
with Parkinson's disease (PD). Findings show that tremors, lack of mental energy, and
being dependent on others were the most stressful symptoms in each category. Although
there was evidence that PD patients match coping efforts to types of stressors, emotional
regulation was the most common coping strategy. Hierarchical regression analyses show
that disease-related variables influence every domain of quality of life, whereas the effects
of coping are more selective. Specifically, the use of distancing was related to poorer
mental and physical health outcomes. Findings focus attention on the disease-related
stressors that create the experience of being chronically ill.
Key Words: Disease-related stressors, Coping, Quality of life, Parkinson's disease
Coping With Disease-Related Stressors
in Parkinson's Disease
Leslie D. Frazier, PhD1
Many different diseases have provided a context
for research on coping and adaptation to chronic
illness (see Maes, Leventhal, & de Ridder, 1996; Stone,
Kennedy-Moore, & Neale, 1995). The extant literature has demonstrated the processes through which
patients cope with the impact of being chronically
ill or having a particular illness. However, this research tells us little about how individual patients
deal with the day-to-day disease-related symptoms
that create what we know generally as the stress of
chronic illness. In an attempt to explore this issue,
the present study examined whether different types
of symptoms evoke different coping strategies and
which coping strategies are related to lessened distress and higher quality of life for patients with Parkinson's disease (PD).
For those diagnosed with a chronic illness, there
are a variety of potentially stressful events that present unique threats and challenges. Situations or problems appraised as stressful are generally those that
are perceived to tax or exceed one's available resources (Lazarus & Folkman, 1984). Regardless of
disease, the impact of the illness affects many domains of functioning, which may consequently produce stress. PD was chosen as the context in which
to explore disease-related stress and coping because,
like other chronic conditions, the stress it produces
is multidimensional and multifaceted. In addition, PD
presents an ideal context for studying stress and coping
because it is highly unpredictable and largely uncontrollable, and because little is known about the
psychosocial aspects of this illness (Dakof & Mendelsohn, 1986; Koplas et al., 1999; Shifren, 1996).
Idiopathic PD is a chronic, progressive, degenerative, neurological disorder affecting 1 % of the population older than 55 years of age (Cummings, 1999;
Stern, 1988). PD patients report many troubling physical
symptoms such as tremors, rigidity, and drooling. Patients also report problems with cognitive functioning such as memory impairment and confusion (Hobson
& Meara, 1999). Psychosocial functioning may also
be impaired, as many patients report changes in interpersonal relationships and social roles, feelings of
being a burden, and loss of control over their lives
(Duvoisin, 1 9 9 1 ) . The current study identifies several domains (i.e., physical, cognitive, psychosocial)
comprising myriad symptoms capable of producing
stress, for which different coping strategies may be
differentially useful for managing the illness.
Coping With Chronic Illness
Coping with illness is not a monolithic process
(Shifren, 1996). Although research has revealed some
patterns of coping that patients often use to manage
their conditions, findings remain inconclusive as to
which coping strategies best facilitate positive psychological adjustment to illness (Christensen, Benotsch,
Wiebe, & Lawton, 1995; Taylor & Aspinwall, 1990).
Generally, coping is conceptualized as "efforts both
action-oriented and intrapsychic to manage (i.e., master,
tolerate, reduce, minimize) environmental and internal demands and the conflicts among them" (Lazarus
This study was supported by a grant from the Florida International
University Foundation.
The author wishes to thank Lisa Waid, Sepidah Shams, and Wei Li
for help with data collection, Drs. Paulette Johnson and V. Vishwesvaran
for statistical consulting, and three anonymous reviewers for comments
on earlier drafts of the manuscript. Special thanks to Drs. Kim Shifren
and Bennett Schwartz for insightful feedback throughout the research
project.
'Address correspondence to Leslie D. Frazier, Department of Psychology, Florida International University, University Park Campus,
Miami, FL 3 3 1 9 9 . E-mail: [email protected]
Vol.40, No. 1,2000
53
& Launier, 1978, p. 3 1 1 ) . These efforts are evoked
when a situation is appraised as threatening or challenging. Traditionally, coping efforts have been dichotomized into strategies aimed at removing or changing the stressor (i.e., action-oriented, problem-focused
due to emotional problems, energy/fatigue, emotional
well-being, social functioning, pain, and self-reported
general health. Although it is well documented that
chronic medical problems have a strong negative impact
on functional domains of quality of life, the influence of chronic medical morbidity on psychosocial
strategies), or strategies that are designed to minimize the emotional impact of stress (i.e., emotional
regulation, emotion-focused strategies).
Several recent studies identified promising patterns
of adaptation to illness. In general, with respect to
chronic illness, active coping is better than avoidant
and affective domains of quality of life remains inconclusive (e.g., Koplas et al., 1999; Lawton, 1 9 9 1 ;
Stewart et al., 1988). More important, the strength
of the influence of disease on quality of life may
vary depending on whether the quality of life dimension can be modified by adaptive strategies (Kem-
coping (Taylor & Aspinwall, 1990). For example, positive
pen, Jelicic, & Ormel, 1997). This finding implies a
critical role for coping in the relationship between
disease and quality of life.
outcomes were related to the use of problem-focused
or active coping, cognitive restructuring, information
seeking, positive reappraisal, seeking social support,
and threat minimization (Affleck, Tennen, Pfieffer, &
Fifield, 1987; Brenner, Melamed, & Panush, 1994;
Carver et al., 1993; Dunkel-Shetter, Folkman, & Lazarus,
1987; Felton & Revenson, 1984; Stone et al., 1995;
Taylor, Lichtman, & Wood, 1984). In contrast, negative
outcomes such as increased distress (Carver et al.,
1993; Dunkel-Shetter et al., 1 9 8 7 ; Ray, Jeffries, &
Weir, 1995), anxiety, depression and poorer psychological adjustment (Felton & Revenson, 1984), poorer
social adjustment (Brenner et al., 1994), poorer illness management (Frenzei, McCaul, Glasgow, & Shafer,
1988), increased pain and functional impairment (Ray
et al., 1995), and decreased quality of life (Stein,
Wallston, Nicassio, & Castner, 1988), were associated with coping through emotional regulation strat-
egies (e.g., wishful thinking, fantasizing, expressing
emotion, blaming oneself, avoidant coping, cognitive and behavioral escape/avoidance, and behavioral disengagement or distancing).
Interestingly, other research shows opposite trends.
For example, in a study of cancer patients, problem-focused coping and especially vigilant monitoring of information was associated with increased side
effects from chemotherapy (Card, Edwards, Harris,
& McCormack, 1988). Other studies with cancer patients show that positive reappraisal was helpful
(Mishel & Sorenson, 1 9 9 1 ; Taylor et al., 1984), whereas
escape-avoidance and self-blame bring a sense of
relief (Filipp, Klauer, Freudenberg, & Ferring, 1990;
Steptoe, Sutcliff, Alien, & Coombes, 1 9 9 1 ) . Still other
studies show that for the chronically ill, distancing
was associated with less distress (Stone et al., 1995),
and may even be adaptive (Dunkel-Shetter, Feinstein, Taylor, & Falke, 1992).
Chronic Illness and Quality of Life
A possible shortcoming of the research on positive adjustment to illness is the diversity of the ways
these outcomes have been operationalized. One
method for examining the impact of disease on mental
and physical health outcomes is to assess healthrelated quality of life (Ahlstrom & Sjoden, 1996; Koplas
et al., 1999; Lawton, 1 9 9 1 ; Stewart, Hays, & Ware,
1988). Quality of life is a broad and multidimensional concept including physical functioning, role
limitations due to physical health, role limitations
54
Coping and Positive Adjustment:
The Matching Hypothesis
Several inferences can be drawn from the literature on coping and positive adjustment to illness.
First, flexibility in the application of coping strategies and the use of multiple strategies may be most
effective in managing the stress associated with chronic
illness (e.g., Dunkel-Shetter et al., 1992; Pearlin &
Schooler, 1978; Strong & Large, 1995). Active strategies and emotional regulation need not, perhaps
should not, be mutually exclusive for positive adaptation. As successful coping strategies, they address
different needs. Problem-focused, active strategies may
be best to manage pain and discomfort, whereas
emotional regulation may be best for dealing with
the ambiguity and unpredictability of illness (Maes
et al., 1996). Active coping may be best for behavioral change, and emotional regulation may be best
for psychological reactions to illness.
A second and related inference is that spontaneous or active matching of coping strategies to particular stressors is essential. The matching hypothesis suggests that for coping to be effective there
must be a good fit between the individual's coping
efforts and situational constraints (Christensen et al.,
1995; Lazarus, 1993; Lazarus & Folkman, 1984; McCrae,
1984). For example, following the matching hypothesis, positive outcomes are more likely when problem-focused strategies are used in situations perceived
as controllable. Similarly, use of emotion-focused strategies or emotional regulation is more likely to lead
to positive outcomes when used in situations that
are outside one's direct control (e.g., Christensen,
Smith, Turner, Holman, & Gregory, 1990; Taylor &
Aspinwall, 1990; Vitaliano, DeWoIfe, Maiuro, Russo,
& Katon, 1990). The present study is based on the
premise that coping efforts are domain specific and
situationally sensitive (Aldwin & Brustrom, 1997). In
each of the domains of interest (i.e., physical, cognitive, psychosocial) some stressors (symptoms) will
be perceived as controllable/changeable and may
evoke active coping, whereas those that are not perceived as modifiable may elicit emotional regulation or distancing (see Aldwin & Brustrom, 1997;
Maes et al., 1996). With respect to the three doThe Gerontologist
mains, more of the physical stressors may be helped
by drug treatment and behavioral modification strategies. Cognitive stressors may be aided by compensatory strategies, but more of these stressors are not
directly controllable/changeable. Many of the psychosocial stressors are emotional consequences of
the disease. It may be more difficult to modify an
emotional response. Therefore, coping may take the
form of modifying or regulating these emotions as
opposed to active, problem-focused coping.
Third, at present, researchers do not know whether
chronically ill patients use different coping strategies
selectively or in tandem. Few studies have focused
on how patients deal with the day-to-day diseaserelated symptoms that create the stress of chronic
illness (but see Spirito, Stark, Gil, & Tyc, 1995). Similarly, the matching hypothesis has not yet been
empirically explored in the context of coping with
medical morbidity. Finally, we need to successfully
identify some of the coping patterns that are consistently linked to preserving and enhancing quality of
life for the chronically ill (Christensen et al., 1995;
Taylor & Aspinwall, 1990).
Therefore, the present study was designed to explore self-reported daily disease-related stressors (symptoms) that PD patients report to be the most stressful, and the specific strategies that they use to cope
with them. Of primary interest was whether certain
coping strategies work most effectively with certain
types of stressors, that is, whether patients match coping
strategies to particular stressors. A secondary interest was to examine the relationships between patterns of coping and mental and physical health outcomes such as perceived stress and quality of life.
The study examines the following hypotheses:
1. It was expected that different types of stressors
(i.e., physical symptoms, cognitive symptoms, psychosocial symptoms) would be differentially
associated with different coping strategies. Following the matching hypothesis, it was hypothesized that physical stressors, which may be amenable to behavioral change, would be associated
with active coping strategies. Cognitive and psychosocial stressors, which may be less able to be
modified actively yet create emotional distress,
were hypothesized to be associated with emotional regulation.
2. It was hypothesized that coping would predict
variance in the mental and physical health outcomes (i.e., perceived stress and quality of life)
beyond the effects of disease-related variables (i.e.,
duration, severity, effectiveness of medications).
interest in participating were given the questionnaires
to take home, fill out, and mail back in the prepaid
return envelope. The second approach was to send
letters describing the study and questionnaires with
prepaid return envelopes to all names on the South
Florida American Parkinson's Disease Association (SFA)
mailing list (N = 375). On average, about 15% of
those attending support groups returned the questionnaires. Response rate for the SFA mailing list was
47%. (The difference in response rates among the
support group sample with a randomly selected subset of the mailing list subjects showed no significant
differences on demographic, disease-related, or psychosocial variables.) Of the mailings, six packets were
returned because the recipient had died, and 21 packets
were excluded because of extensive missing data.
Four packets were excluded because the score on
the cognitive screening instrument was beyond the
cut-off, indicating potential memory impairment. Cognitive functioning was assessed with the Short Portable
Mental Status Questionnaire (SPMSQ; Pfeiffer, 1975).
Five errors were delineated as the exclusion criterion (McDowell & Newell, 1996). Of the participants
included in the sample, the average score on the
SPMSQ (after adjusting for level of education), was
.35 (5D = .82; range 0-4). These scores are within
the range of intact functioning, which may include
mild, occasional forgetfulness (McDowell & Newell,
1996), but which would not impair participants' ability
to answer the research questions.
The final sample was based on data from 145 PD
patients. Participants ranged in age from 48 to 91
years with a mean of 73.4 years (SO = 6.90). Approximately 65.5% of the sample were men and 34.5%
were women. Ninety-six percent of the sample were
White, and the remaining were Hispanic (3%) or
Native American (1 %). Whereas most of the sample
were married (80%) and had been for an average of
39 years (5D = 19.5; range 1-67), 12% were widowed, 4% separated or divorced, and 4% never married.
The sample was well educated; 39% had graduated
from high school, 27% had some college or a business/technical degree, 17% had completed college,
and another 17% had earned graduate or professional degrees. Socioeconomic status (SES) as measured by the Hollingshead Index (Hollingshead, 1975)
indicated that this sample was of above-average
economic status. With a range from a low of 26 to
a high of 66, the average SES was 47 (5D = 10).
The demographic profile of this sample is similar to
samples profiled in epidemiological studies of PD
(Koller et al., 1986; Marttila & Rinne, 1986).
Measures
Method
Disease-related Questions.—Following the demographic questions, participants were asked how long
they had PD and who had made the diagnosis. The
perceived severity of the illness was assessed with
a question: "Would you say that your symptoms are:
not very severe (0); mildly severe (1); moderately
severe (2); quite severe (3); very severe (4). The
Participants
Two avenues of recruitment were used to recruit
patients with PD. One approach involved visiting
PD support groups in three eastern cities. At each
support group meeting, individuals who expressed
Vol. 40, No. 1, 2000
55
effectiveness of their medications was assessed with
the following question: "Would you say your medications are: very effective (4); quite effective (3); moderately effective (2); mildly effective ( 1 ) ; not very
effective (0)." Patients were asked to list the medications and dosages they were taking.
ful symptoms (i.e., physical, cognitive, psychosocial),
to create nine separate conditions, for which scores
on the COPE scale were measured. COPE score (i.e.,
mean or degree of endorsement of a particular coping strategy) was treated as the dependent variable
in the subsequent analysis of variance. The stressor
x coping strategy dimensions and the reliability (Cronbach's alpha) of each dimension are as follows:
Active-Physical (.53); Emotions-Physical (.55); Distancing-Physical (.57); Active-Cognitive (.62); Emotions-Cognitive (.62); Distancing-Cognitive (.55);
Active-Psychosocial (.68); Emotions-Psycnosocial (.62);
and Distancing-Psychosocial (.60).
Stressful Symptoms.—The perceived stressfulness
of specific symptoms and problems associated with
PD were assessed by asking patients to choose the
most stressful symptom from among a list of similar
symptoms. Symptoms were grouped into three categories: (1) motoric or physical symptoms which included: dressing/grooming, rigidity, difficulties with
sexual activity, etc.; (2) cognitive symptoms such as:
forgetful ness, difficulty concentrating, lack of mental
energy, etc.; and (3) symptoms of a psychosocial or
emotional nature (feeling socially isolated, being dependent on others, loss of control, etc.). Groupings
of symptoms were made on the basis of the domain
that the symptoms primarily affected (i.e., the type
of functioning impaired by the symptom), and a similar
procedure used in earlier research (Brod, Mendelsohn,
& Roberts, 1998). Types of stressor were treated as
independent variables to predict COPE score.
Participants were first presented with the list of
physical symptoms and asked to circle the most stressful symptom and to answer the coping questions with
that specific symptom in mind; this procedure determined which particular symptom was the most
stressful within each category and what strategies participants used to manage that symptom. The process
was repeated for the cognitive and the psychosocial
symptom lists. Data on stressful symptoms were later
coded into numeric categories for data analysis.
Coping.—Coping strategies were assessed using a
modified version of the COPE Scale (Carver, Scheier,
& Weintraub, 1989). The questionnaire was constructed
to include 12 questions, one assessing each of the
following coping behaviors: (1) active coping; (2) suppression of competing activities; (3) restraint coping; (4)
instrumental social support; (5) emotional social support; (6) positive reinterpretation; (7) acceptance; (8)
venting emotions; (9) turning to religion; (10) denial;
( 1 1 ) behavioral disengagement; and ( 1 2 ) mental disengagement. The instructions asked participants to
answer each question about what they usually do to
manage the stress associated with the symptom that
they chose as the most stressful symptom. Answers
ranged on a four-point scale from not very often (1)
to very often (4).
The 12 questions on this modified COPE questionnaire were broken down to reflect three general
coping strategies: questions 1-4 were used to assess
Active coping; questions 5-8 were used to assess
Emotional regulation; and questions 9-12 were used
to assess Distancing. Coping strategies can then be
considered independent variables, and the participants' scores on the COPE questionnaire for each
coping strategy could be used as a dependent variable. Coping strategies were then crossed with stress-
Perceived Stress.—A global measure of perceived
stress was used to determine the degree to which PD
patients experience anxiety not directly related to
disease symptomatology. In this way, perceived stress
was conceptualized as an outcome variable. Perceived
stress was assessed using the Perceived Stress Scale
(PSS; Cohen, Kamarck, & Mermelstein, 1983). This is
a 10-item scale designed to determine the extent to
which situations in one's life are appraised as stressful. Each question asked participants about their
thoughts and feelings during the last month. Answer
choices ranged from never (0); almost never (1); sometimes (2); fairly often (3); very often (4). The PSS was
scored (after item-reversals) by summing scores across
the 10 items. High scores indicated a greater degree
of stress. This measure showed high reliability; the
Cronbach's alpha in the present study was .85.
Quality of Life.—Quality of life was assessed using
the SF-36, a 36-item health survey developed by
Ware and Sherbourne (1992; see also Stewart et al.,
1988). The SF-36 covers eight health-related dimensions of quality of life. The eight dimension and the
reliability indices (Cronbach's alpha) of the subscale
in the present sample were: physical functioning (.63);
role limitations due to physical health problems (.65);
role limitations due to personal or emotional problems (.70); energy/fatigue (.66); general mental health
(.53); social functioning (.70); bodily pain (.49); and
general health perceptions (.57). The reliability of
these subscales is consistent with standardized data
(Kurtinetal., 1992; McDowell & Newell, 1996). Although
this scale does not yield an overall single summary
score representing quality of life, scale scores within
each dimension provide a unique and detailed profile
of which areas of quality of life are most affected by
life events such as chronic illness. For each scale,
high scores indicate more positive assessments and
better functioning. Scale scoring is detailed in a test
manual available through the Rand corporation (Hays,
Sherbourne, & Mazel, 1993).
Results
A Profile of Parkinson's Disease
The PD patients who participated in this study
had been ill for an average of 8 years (SD = 6). The
56
The Gerontologist
by 14% of the patients, whereas 13% mentioned
forgetfulness and 11% reported slowed thinking processes as the most stressful. There was much more
variation in the psychosociai symptoms reported as
stressful (see Figure 3). Being dependent on others
was reported to be the most stressful by 21% of the
sample, feelings of being a burden was mentioned
by 17% of the sample, feelings of depression was
most stressful for 15% of the sample, feelings of loss
of control was reported by 14% of the sample, and
difficulty being understood was reported by 10% of
the PD patients.
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Coping With Disease-Related Stressors:
The Matching Hypothesis
In order to test the primary hypothesis (i.e., the
matching hypothesis), that patients would use different coping strategies (i.e., active coping, emotion regulation, distancing) for different types of Stressors (i.e.,
physical, cognitive, psychosociai), a 2-way (coping
strategy x Stressors) within-subject analysis of variance (ANOVA) was computed. Coping strategies and
types of Stressors were treated as the independent
variables. Coping strategy was operationalized as a
subset of four questions on the COPE questionnaire
that evaluate the coping dimension. The dependent
variable (a numerical score on the COPE questionnaire) was operationalized as the mean response to
each subset of 4 questions on the COPE questionnaire; the mean response represents the degree of
endorsement of a particular coping strategy. The independent variable, coping strategy (i.e., active coping,
emotional regulation, distancing), is conceptually different from the dependent variable (i.e., mean endorsement for each strategy). The independent variable
Physical Stressors
Figure 1. Mean percentages of most stressful physical symptoms.
length of illness ranged from 1 year to 24 years.
Most patients reported the symptoms of PD were
only mildly (29%) or moderately severe (36%), and
most felt that their medications were moderately (43%)
or quite (29%) effective.
As Figure 1 shows for physical symptoms, 1 7%
reported tremors as the most stressful, 14% stated
the rigidity was the most stressful, 11% found getting up from a chair was the most stressful, and 11%
cited fear of falling as their most stressful symptom.
Needing extra effort, difficulties with walking, swallowing, and sexual activities were reported as well.
Over 26% of these PD patients found the lack of
mental energy to be the most stressful cognitive symptom (see Figure 2). Difficulty sleeping was mentioned
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Psychosociai Stressors
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Figure 3. Mean percentages of most stressful psychosociai
Figure 2. Mean percentages of most stressful cognitive symptoms.
Vol.40, No. 1,2000
symptoms.
57
Coping Strategies
Physical
Cognitive
Disease-Related
——•—
Active
——ft——
Emotional Regulation
——O—
Distancing
Psycho:
Stressors
Figure 4. Means on COPE Questionnaire by type of stressor
and coping strategy.
was created prior to examining means on the COPE
questionnaire. The probability of a Type I error was
maintained at .05 for this and all subsequent analyses. Results showed a significant main effect of coping strategy, f(2,290) = 22.17, p < .0001. As predicted, there was a significant interaction between
coping strategy and type of stressor, F(4,580) = 3.81,
p < .01. However, no significant differences emerged
among types of stressor, F(2,290)= 1.95; p = . 1 5 .
The main effect of coping strategy was due to the
fact that across all types of stressors, distancing was
used significantly less than either active coping or
emotional regulation (see Figure 4). The interaction
was found because across all types of stressors, the
coping strategies were significantly different from one
another with one exception. Based on Fisher's LSD
post-hoc paired t tests, for psychosocial stressors emotional regulation was not significantly different from
active coping.
The results of the ANOVA provided evidence that
patients use different coping strategies for different
types of stressors. In order to determine if this matching
of coping strategies to types of stressors was adaptive, a series of Pearson product-moment correlations
and point bi-serial correlations were computed. (A
table of these analyses is available from the author.)
Severity was significantly correlated with active coping
for physical stressors, r = .29, p = .001, and distancing from physical, r = .22, p - .01, cognitive stressors, r = .22, p = .0001, and psychosocial, r = .16,
p = .05. Severity was significantly positively correlated with perceived stress, r = .41, p = .0001, and
significantly negatively correlated with every dimension of quality of life (p < .01). Use of active coping
for physical stressors and distancing from cognitive
stressors showed the same associations with mental
and physical health outcomes—both significantly increased perceived stress and decreased quality of
life (p < .05).
Predictors of Coping and Mental
and Physical Health Outcomes
Findings thus far indicated that patients use coping strategies differentially, and that severity of illness was differentially associated with coping and
58
consistently associated with mental and physical health
outcomes. The next set of analyses aimed to determine the effects of coping on quality of life beyond
the effects of disease. Therefore, a series of hierarchical linear multiple regressions were conducted to
assess the combined role of demographic variables,
disease-related factors, and coping strategies in predicting perceived stress and dimensions of quality
of life separately. In order to examine the contributions of coping beyond demographic and diseaserelated variables, the potential influence of age, gender,
severity, effectiveness of medications, and duration
of illness (henceforth referred to as disease-related
factors) was forced, as a block, to enter the equation first. The change in R2 was then isolated as the
unique contribution of the combined coping strategies. Table 1 shows the results of the regression analyses,
including regression coefficients for coping variables
entered at Step 2.
In Step 1 of the first hierarchical regression, 21%
of the variance in perceived stress was attributed to
the combined influence of the demographic and
disease-related variables, f(5,139) = 7.38, p < .0001.
In Step 2, an additional 21% of the variance in perceived stress was accounted for by adding coping style to the model, F(9,131) = 5.26, p < .0001.
Clearly, disease-related characteristics alone contributed to higher perceptions of stress; combined
with the use of less efficient coping strategies (such
as distancing, especially for cognitive stressors), perceptions of stress were magnified.
In the second regression equation, disease-related
variables were entered at Step 1 into a model predicting the physical functioning dimension of quality of life. The model was significant, F(5,139) =
16.20, p < .0001, indicating that over 37% of the
variance in physical functioning was predicted by
severity, effectiveness of medication, duration, age,
and gender. However, the contributions of coping
were negligible. When entered into the equation at
Step 2, the change was not significant. A similar picture
emerged for the physical limitations, energy, pain,
and the general health dimensions of quality of life.
Each of these models was significantly predicted by
disease-related variables; however, the addition of
coping to the model at Step 2 did not account for
significant additional variance. For these outcome measures, disease-related and demographic variables were
more powerful predictors than coping strategies.
Conversely, the psychosocial or emotional dimensions of quality of life were significantly affected by
coping beyond the effects of disease-related variables.
For example, as Table 1 shows, in the initial regression equation predicting emotional limitations, 17%
of the variance was due to disease-related and demographic variables, f(5,139) = 5.79, p < .0001.
However, when coping strategies were added, an
additional 10% of the variance was accounted for
and this change was significant, F(9,131) = 1.95,
p < .05. Likewise, for the emotional well-being
dimension of quality of life, the disease-related/
demographic variables claimed 18% of the variance,
The Gerontologist
Table 1. Summary of Hierarchical Regression Analyses Displaying the Influence of Coping Beyond
the Influence of Disease-related Factors (N = 145)
Regression Equation
Perceived stress
Step 1 K 2 (Adj. K2)
AR2
Step 2 R 2 (Adj. R 21 )
.21 ****(. 18)
.21****
,42****(.36)
SEb
Step 2.
.42
Active-physical
Emot. Reg-physical
Dist-physical
Active-cognitive
Emot. Reg-cognitive
Dist-cognitive
Active-psychosocial
Emot. Reg-psychosocial
Dist-psychosocial
QoL:
Emotional limit.
,17****(.14)
6.39
8.60
8.97
6.22
9.96
9.01
7.17
9.74
9.24
-.08
.15
-.04
-.13
-.02
-.27*
.11
.07
.07
-3.69
2.46
-2.38
-3.37
7.21
-8.54
5.93
-2.06
-4.43
3.10'
4.17
4.35
3.02
4.83
4.37
3.47
4.72
4.48
-.12
.07
-.06
-.11
.22
-.22*
.19
-.06
-.12
-5.10
4.00
-2.93
4.18
-10.78
-7.66
2.78
3.92
-2.57
3.63
4.89
5.10
3.54
5.66
5.12
4.07
5.54
5.25
-.14
.10
-.07
.11
-.28
-.17
.07
-4.53
9.94
-3.10
-7.80
-1.03
-20.1
7.08
4.23
5.08
.18****(.15)
.16***
,34****(.26)
Step 2
Active-physical
Emot. Reg-physical
Dist-physical
Active-cognitive
Emot. Reg-cognitive
Dist-cognitive
Active-psychosocial
Emot. Reg-psychosocial
Dist-psychosocial
QoL: Social funct.
Step 2
.04
.07
.12
.07
-.07
.28**
-.16
-.18
.17
. 1 0 * .27****(.19)
Step 2
Active-physical
Emot. Reg-physical
Dist-physical
Active-cognitive
Emot. Reg-cognitive
Dist-cognitive
Active-psychosocial
Emot. Reg-psychosocial
Dist-psychosocial
QoL: Emot. well-being
.98
1.32
1.38
.96
1.53
1.39
1.10
1.50
1.42
.76
1.49
.79
-.78
3.68
-1.73
-1.96
2.13
.28****(.25)
.09*
Active-physical
Emot. Reg-physical
Dist-physicai
Active-cognitive
Emot. Reg-cognitive
Dist-cognitive
Active-psychosocial
Emot. Reg-psychosocial
Dist-psychosocial
.37****(.30)
.10
-.06
Note: In each hierarchical regression at Step 1, Age, Gender, Duration, Severity, Effectiveness of medications were entered as a
block. At Step 2, the nine (9) coping dimensions were entered as a block. Active-physical = active coping for physical stressors;
Emot. Reg-physical = emotional regufation for physical stressors; Dist-physical = distancing for physical stressors; Active-cognitive =
active coping for cognitive stressors; Emot. Reg-cognitive = emotional regulation for cognitive stressors; Dist-cognitive = distancing
for cognitive stressors; Active-psychosocial = active coping for psychosocial stressors; Emot. Reg-psychosocial = emotional regulation for psychosocial stressors; Dist-psychosocial = distancing for psychosocial stressors.
*p = .05; **p = .01; ***p = .001; ****p = .0001.
f(5,139) = 6.13, p < .0001. Coping strategies explained an additional 16% of the variance in wellbeing. Together, disease characteristics and coping
strategies predicted 34% of the variance in emotional well-being, f(9,131) = 3.37, p < .001. The
social dimension of quality of life was also affected
by both disease-related factors and coping. Age,
gender, severity, and medical effectiveness conVol. 40, No. 1, 2000
59
tributed 28% of the variance in the social functioning, f(5,139) = 10.79, p < .0001. Coping strategies
significantly improved the predictive ability of the
model, f(9,131) = 2.12, p < .03, and contributed an
additional 9% to the variance of the social functioning domain of quality of life.
The regression analyses showed that beyond the
influence of the disease itself, coping has a selective
influence on mental and physical health outcomes.
Severe symptoms combined with the use of distancing increased perceived stress and decreased quality
of life in domains that were emotional rather than
physical in nature. Conversely, quality of life was
elevated when there was less use of distancing, especially for cognitive stressors or symptoms.
Discussion
The present study is unique for several reasons.
First, it is the first examination of the differential relationships between three categories of disease-related stressors (i.e., physical, cognitive, psychosocial)
and the strategies used to cope with them. Second,
this study is novel in its use of the matching hypothesis within the context of coping with chronic disease. Third, this study shows the selective influence
of coping beyond the impact of disease in adjustment to PD. Finally, several interesting and unexpected findings emerged that shed light on factors
influencing individual differences in the experience
of chronic illness and have potential for applied interventions designed to maximize quality of life for
the chronically ill.
Summary of Findings
Of the symptoms PD patients found stressful, rigidity and tremor were most stressful in the physical
domain, lack of mental energy was the most stressful
in the cognitive domain, and dependency, fear of
being a burden, depression, and feelings of loss of
control were the most stressful in the psychosocial
domain. For these stressful symptoms, patients in this
study were most likely to use emotional regulation
and least likely to use distancing as coping mechanisms. Severity of disease was associated with greater
use of active coping for physical stressors, and greater
use of distancing across all stressors; this had a negative impact on mental and physical well-being. As
expected, disease-related variables were consistently
strong predictors of perceived stress in each of the
eight dimensions of quality of life. However, the contribution of coping was highly selective. Coping made
a difference in predicting perceived stress, emotional
role limitations, overall emotional well-being, and
social functioning. Specifically, less use of distancing
from stressful symptoms was related to better outcomes in these areas. This finding supports earlier
research on coping with other chronic illnesses (Carver
et al., 1993; Cronkite & Moos, 1984; Dunkel-Shetter
et al., 1987; Frenzel et al., 1988; Holohan & Moos,
1987; Ray et al., 1995; Taylor & Aspinwall, 1990;
Zautra & Manne, 1992).
Potential Implications
This study adopted a micro-level assessment of
disease severity and stressful symptomatology. The
findings draw attention to the importance of diseaserelated characteristics as markers of adjustment. Con-
60
sistent with the literature that has identified selfreported health as a robust predictor of mortality and
morbidity (Hays, Schoenfeld, & Blazer, 1996; Idler
& Kasl, 1995; Markides, Lee, Ray, & Black, 1993;
Rakowski, Fleishman, Mor, & Bryant, 1993), self-reported severity of disease and perceived effectiveness of medications were indeed robust predictors
of coping, perceived stress, and quality of life in the
present study. Clearly, patients make realistic appraisals
of different dimensions of their health status, and
those assessments are consistently related to indices
of adaptation.
The findings reported here fit well with the matching
hypothesis (Lazarus, 1993; Lazarus & Folkman, 1984;
McCrae, 1984). Patients differentially utilize alternative coping strategies to manage different stressful
symptoms. In effect, they tailor their coping efforts
to the symptoms that they are managing. In some
cases the fit is good, and higher quality of life is
achieved. In other cases, when the fit is poor due to
a mismatch, less desirable outcomes arise.
Accordingly, it was hypothesized that physical symptoms would be more amenable to action-oriented,
problem-focused coping strategies than cognitive or
psychosocial symptoms (McCrae, 1984). In addition,
based on early coping research it was assumed that
active coping would be more effective at relieving
distress (e.g., Carver et al., 1989; Lazarus & Folkman,
1984; Pearl in & Schooler, 1978). Therefore, it was
quite surprising to find that the use of active coping
for physical stressors was significantly correlated with
higher perceived stress and lower quality of life. Severity was significantly correlated with the use of
active strategies for physical stressors. As medications
became less effective there was a significant increase
in distancing. Other studies on coping with chronic
illness have found that active coping was useful when
the context permited change. However, active coping
may be futile in situations in which there is little room
for control or change (Christensen et al., 1995; Felton
& Revenson, 1984; Lazarus & Folkman, 1984; Taylor
& Aspinwall, 1990; Vitaliano et al., 1990). PD patients in this study reported that their most stressful
physical symptoms were tremor, rigidity, and difficulty getting up from a chair. These are mobility
problems that are managed to some degree by effective drug treatment. Yet, they may remain largely
outside the patients' direct control. Therefore, it is
likely that less desirable mental and physical health
outcomes arise when attempts to manage these symptoms in active ways are unsuccessful and ineffective.
For situations in which active strategies are less
effective or a mismatch arises and leads to increased
distress and lessened quality of life, the reaction may
be to cope by behaviorally or emotionally disengaging or distancing. Patients in this study used distancing
less than the other coping strategies, but they did
engage in distancing for physical, cognitive, and psychosocial stressors. Consistent with prior research, this
study shows that distancing is a less effective coping strategy, related to poorer mental and physical
health outcomes (Brenner et al., 1994; Carver et al.,
The Gerontologist
1993; Dunkel-Shetter et al., 1992; Frenzel et al., 1988;
Ray et al., 1995; Taylor & Aspinwall, 1990).
Evidence from the present study showed results
consistent with the matching hypothesis: that emotional regulation is important for positive mental and
physical health outcomes. Evidence from past research
indicates that emotion-focused coping and emotional
regulation were less effective at alleviating distress
(Lazarus & Folkman, 1984). Few other studies of coping
with illness have found emotional regulation to be
related to positive outcomes (but see Carver et al.,
1993; Dunkel-Shetter et al., 1992). However, based
on the patterns of coping found in the present study,
effective interventions would aim to identify patients
using active problem-solving for problems not amenable to change before they become discouraged
and begin to rely on disengagement. These patients
could be instructed in positive emotional regulation
strategies as a means for facilitating successful coping and ideal outcomes.
With respect to successful outcomes, in this study
all domains of quality of life were affected by disease-related factors (see also Kempen et al., 1997;
Koplas et al., 1999; Stewart et al., 1988). However,
when patients used less effective coping strategies
such as distancing, the impact was felt selectively
on the emotional or psychosocial domains of quality of life such as emotional well-being, social functioning, and role limitations due to emotional problems. Ineffective coping increased distress and decreased emotional well-being, yet it did not impact
physical domains of quality of life such as physical
functioning, energy/fatigue, pain, or general health.
Coping may not be as critical for improving physical functioning or other physical aspects of chronic
illness, although it is crucial for managing cognitive
and psychosocial changes associated with illness. Coping effectively may be the buffer that preserves quality
of life. Conversely, ineffective coping may have a
synergistic effect with the stressful ness of chronic morbidity, contributing to greater distress and lower quality
of life.
Potential Limitations
This study has several possible limitations. First,
the study was designed to explore patterns of coping; consequently, the questions on the COPE scale
were condensed to represent three basic coping strategies. Admittedly, some information on the specific
actions and emotional responses is lost by combining these questions. However, as a preliminary study
of the effects of coping with disease symptomatology, the methodology chosen worked best. Future
work has been planned to examine coping on a more
subtle level.
Second, research has identified the role of anxiety, negative affectivity, and personality traits such
as neuroticism, in the experience of symptoms, appraisals of stress, and use of coping strategies (Diefenbach, Leventhal, E., & Leventhal, H., & Patrick-Miller,
1996; Watson & Pennebaker, 1989). Although perVol. 40, No. 1,2000
sonality was not of interest in the present study, one
cannot rule out the possible influence it might have
in the relationships between disease-related stressors,
coping, and quality of life. Future studies of coping
with chronic illness may want to integrate personality constructs in order to control their potential
effects.
Third, there will always be some limitations associated with self-report, retrospective measures, and
self-selected samples. The majority of participants in
this study were recruited from a mailing list of the
South Florida PD Association. Those who received
the questionnaire in the mail and chose to respond
may be different than those who did not respond.
Unfortunately, it is not possible to validate this conclusion. However, given the respectable response
rate, large sample size, variability on demographic
and disease-related parameters, and the reliability
of the measures, it is safe to assume that those limitations were kept to a minimum. A caveat is also in
order regarding the use of patient samples for psychosocial research. The sample used in this study
varied in the age at onset and duration of illness,
and may have included both familial (inherited) and
nonfamilial PD patients. A clinician's assessment would
have provided useful etiological information regarding the sample, and future psychosocial research
should try to include such data. However, the population of patients with PD is not homogeneous, and
it was an aim of the study to be as inclusive as
possible in order to examine the myriad of psychosocial factors influencing the experience of living
with this disease.
In conclusion, the present study is unique in its
examination of the day-to-day stressors that create,
in part, the stress of living with chronic illness. Successful coping for chronically ill patients happens
on many levels, from managing daily fluctuations in
symptomatology to dealing with the reality of never
being completely well again. In order to understand
overall adjustment to illness, we need to understand
the micro-level efforts used to cope with illness (Stone
& Neale, 1984). This study identifies important features of PD that create distress and require effective
coping to preserve quality of life. Although PD is a
unique chronic illness, many of its symptoms (e.g.,
difficulties with sexual activities, lack of mental energy, feelings of being a burden) may be shared with
other medical illnesses. The findings reveal several
patterns of coping that lead to optimal and less than
optimal adjustment. Once revealed, these patterns
provide blueprints for building effective interventions
that strengthen the skills needed for facilitating quality of life in the chronically ill.
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Accepted October 5, 7999
Decision Editor: Vernon L. Creene, PhD
CALL FOR PAPERS!
The 53rd Annual Scientific Meeting of
The Gerontological Society of America
November 17-21, 2000, Washington, D.C.
Abstracts due April 3, 2000. See www.geron.org for details.
Vol.40, No. 1,2000
63