Journal of Pediatric Psychology, Vol. 26, No. 4, 2001, pp. 237-246
© 2001 Society of Pediatric Psychology
Risk and Resistance Factors in the Adaptation in Mothers of Children With Juvenile Rheumatoid Arthritis
Wake Forest University School of Medicine
All correspondence should be sent to Janeen C. Manuel, Wake Forest University School of Medicine, Department of Public Health Sciences, PHS Hawthorne, Medical Center Blvd., Winston-Salem, North Carolina 27157. E-mail: jmanuel{at}wfubmc.edu .
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Abstract |
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Objective: To examine the importance of illness severity, child functional status, psychosocial stress, intrapersonal factors, stress processing, and social-ecological factors in predicting psychological symptoms among mothers of children with juvenile rheumatoid arthritis (JRA).
Methods: Mothers of 92 children with JRA completed surveys while waiting with their children for physician appointments or during JRA meeting breaks.
Results: Mothers reported higher mean levels of psychological symptoms than a normative group. Higher levels of psychosocial stress predicted increased psychological symptoms after accounting for disease severity and functional status. Maternal appraisal of the illness tended to moderate the relationship between illness stress and psychological symptoms, and maternal education moderated the relationship between daily hassles stress and psychological symptoms.
Conclusions: These data indicate that mothers of children with JRA are at risk for psychological distress. Inteventions that take into account the buffering effects of maternal education and appraisal may serve to decrease the effects of maternal stress.
Key words: chronic illness; juvenile rheumatorid arthritis; mothers; maternal adaptation; stress.
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Introduction |
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The psychological well-being of parents, especially mothers, of chronically ill children is important not only in its own right but also because of the high correlation between parent mental health and child outcome (e.g., Cole & Reiss, 1993
;
Hobbs, Perrin, & Ireys,
1985). Many studies of mothers of chronically ill children report
an increased amount of psychological distress compared to mothers in families
without chronic illness (e.g., Breslau,
Staruch, & Mortimer, 1982;
Nagy & Ungerer, 1990).
However, other studies have found that mothers of chronically ill children and
mothers of healthy children function equally well (e.g.,
Cadman, Rosenbaum, Boyle, & Offord,
1991; Spaulding & Morgan,
1986).
There are several reasons for this contradiction; perhaps the most
important is the lack of guidance by conceptual models such as Wallander and
Varni's (1992)
disability-stress-coping model. Models account for factors that buffer the
stress of having a chronically ill child and thus are better able to
distinguish well-adjusted from maladjusted mothers
(Thompson & Gustafson,
1996).
Wallander and Varni's
(1992) framework utilizes
Pless and Pinkerton's (1975)
work on the adjustment of chronically ill children and adds family coping
(Moos & Schaefer, 1984)
and cognitive appraisal (Lazarus &
Folkman, 1984) concepts. It is organized in a risk-resistance
framework; risk factors include illness parameters and psychosocial stress,
and resistance factors are intrapersonal, social ecological, and stress
processing (Wallander & Varni,
1992).
Risk Factors
Many researchers have studied the impact of disease severity on maternal
and child adjustment (e.g., Canning,
harris, & Kelleher, 1996;
Wallander, Varni, Babani, Banis, DeHaan,
et al., 1989); most have found no or only a modest relationship
between the two. However, many studies confuse disease severity and functional
status. An objective measure of severity unique from functional status might
be more informative on its effects on maternal adjustment.
According to Wallander and Varni
(1992), functional ability,
although conceptually related to severity of illness, is a distinct risk
factor for maladjustment. Pless and Pinkerton
(1975) identified functional
dependence as a major cause of strain in children with disabilities and as a
cause of strain in their mothers. Therefore, the inclusion of a functional
status measure along with an indicator of disease severity in a model
examining maternal outcomes is essential.
Further, the psychosocial stress resulting from chronic physical illness
may be the main source of adjustment problems in mothers of chronically ill
children. These mothers not only face the stresses of everyday living; they
also deal with their children's illness-related stressors, such as medication
regimens and special transportation needs. Because of the chronic illness,
mothers also may feel more stress when their children face normal
developmental transitions (e.g., beginning school) than do mothers of healthy
children (Thompson & Gustafson,
1996).
In addition, mothers deal with the ordinary hassles of everyday life.
Several studies demonstrate a direct relationship between routine stresses and
the adjustment of mothers of chronically ill children (e.g.,
Thompson, Gil, Burbach, Keith, &
Kinney, 1993). The additive effects of illness-related and
ordinary hassles may cause increased difficulties for some mothers; therefore,
it is important to examine both types of stress when examining family
outcomes.
Resistance Factors
Several authors have proposed resistance factors that may buffer the stress
of having a chronically ill child. These factors have been described by the
disability-stress-coping model as intrapersonal, social ecological, or stress
processing (Wallander & Varni,
1992).
Few researchers have examined the effects of intrapersonal factors on
mothers of chronically ill children, perhaps believing that these factors are
stable and not relevant to intervention
(Thompson & Gustafson,
1996). However, research on adults in general suggests that they
are important to well-being. For example, locus of control has been associated
with adaptive responses to health problems
(Strickland, 1978). Therefore,
it may be useful to scrutinize the effects of locus of control on the
relationship between stress and adaptation.
Social ecological factors have been highly researched, and there is strong
support for the role of family factors on maternal adjustment (e.g.,
Barakat & Linney, 1992;
Canning et al., 1996). Research
on mothers of children with different illnesses has found that higher levels
of maternal adjustment relate to mothers' reports of increased family
supportiveness (e.g., Barakat & Linney,
1992) and greater family conflict (e.g., Kronenberger &
Thompson, 1992).
Family resources also may affect maternal stress. Resources include
characteristics of the family such as income, mother's education and age, and
duration of marriage (Wallander, Varni,
Babani, Banis, & Wilcox, 1989). Low family income and maternal
education seem especially linked to maternal distress (e.g.,
Canning et al., 1996;
McCormick, Athreya, & Stemmler,
1985).
In addition, the importance of social support to maternal adjustment is
well documented. Several studies report the significance of both intra- and
extrafamilial social support to mother's adaptation. For instance, Barakat and
Linney (1992) noted that
increased maternal social support related to both higher maternal
psychological adjustment and higher child adjustment. Another study found
maternal reports of family supportiveness and larger support networks to be
related to mothers' mental and social functioning
(Wallander, Varni, Babani, DeHaan, et al.,
1989).
Stress processing factors such as appraisal have been linked to the
adjustment of mothers of chronically ill children. In a study of mothers of
children with various chronic illnesses, Ireys and Silver
(1996) reported that mothers'
perceptions of the impact of the child's condition on the family affected
their adjustment even after accounting for condition parameters. Further,
Lustig et al. (1996) found
that mothers' appraisal of the impact of the illness on the family mediated
the effects of medication type and the child's functional status on the
mother's psychological health. These findings show the importance of maternal
appraisal to adaptation.
This study examined the adjustment of mothers of children with JRA.
Resistance factors within Wallander and Varni's
(1992) model reported as
important to maternal adaptation were chosen. Whereas the model posits both
direct and indirect effects of these factors, I focused on moderating effects
because this could lead to the identification of subgroups of mothers who are
more resilient or vulnerable under certain conditions, and this selection has
clinical implications.
I tested two hypotheses. First, I hypothesized that psychosocial stressors were important to maternal adjustment over and above children's disease severity and functional ability. Second, I hypothesized that health-related locus of control, maternal appraisal, family supportiveness and conflict, maternal education, family income, and extrafamilial social support would moderate the relationship between mothers' perceived psychosocial stressors and psychological symptoms.
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Method |
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Participants and Recruitment
Institutional review board (IRB) approval was obtained from participating institutions. All mothers of children who fit the inclusion criteria and had doctors' appointments at collection sites between October 1998 and September 1999 were asked to participate. Participation was also solicited from mothers at two JRA meetings in south Florida. Mothers of children ages 5-16 years (inclusive) diagnosed with oligoarthritis, polyarthritis, or systemic JRA for at least a year were recruited. Mothers of children with mental retardation or other chronic illnesses in addition to JRA were excluded.
Mothers were approached in the office waiting area by a trained researcher or physician. A trained assistant at the sign-in table approached mothers recruited at JRA meetings. The study was explained, and if the mother expressed interest, a consent form was provided along with a packet of questionnaires. Mothers were asked to complete the surveys while the researcher or physician waited nearby to answer questions. Most mothers took about 30 minutes to complete the questionnaires. Parents unable to complete the surveys in the available time were provided with a stamped return envelope and asked to return the surveys at a later time.
At four clinics and two JRA meetings, 120 mothers were approached. One hundred and six agreed to participate, and of these, 99 (83%) completed and returned the surveys. Seven mothers were excluded because they did not fit the inclusion criteria (in each case, the child was younger than 5 years); data from the remaining 92 participants were analyzed for this study.
Overall, mothers ranged in age from 26 to 57 years (M = 38.7, SD = 5.73). Children ranged in age from 5 to 16 years (M = 10.2, SD = 3.32), and there were an average of 2.6 children in each family (SD = 1.04). Children had been diagnosed with JRA from between 1 and 15 years, with an average length of time since diagnosis of 4.2 years (SD = 3.52). As anticipated by the incidence rate of the disease, most of the children with JRA were female (72%).
Mothers' reported family incomes before taxes in 1998 ranged from less than $10,000 to over $100,000 per year; the most frequent income category chosen was $50,000-$74,999. Mothers' highest level of education completed spanned from junior high or less to graduate and postgraduate degrees, although most mothers reported having at least some college or more (71%). Most of the mothers were currently married (82%), and the average duration of marriage was 14.7 years (SD = 6.41). While most of the mothers were non-Hispanic white (77%), African Americans (16%), Hispanics (4%), Asians (2%), and Native Americans (2%) were represented in the sample. Fifty-seven percent of the mothers reported working outside the home full-time, 21% reported being homemakers, 12.3% worked part-time, and 2.5% were unemployed.
Measures
Disease severity was assessed by asking mothers to check one of five boxes
to indicate whether their children took no medication for JRA,
nonsteroidal anti-inflammatories (NSAIDs), antirheumatic medications,
steroids, or other medications (specified) in the past 2 weeks.
Examples of medications from each group were provided. Each category was
assigned a score (no meds = 0, NSAIDs = 1,
antirheumatics = 2, and steroids = 3), and total scores were
the sum of scores from each category. Textbooks on the treatment of children
with JRA have recognized these categories as those prescribed in order of
increasing severity of the disease, and the use of more than one type of
medication is considered an important indicator of disease severity
(Cassidy, 1997). This
assessment was chosen because of its objectivity and because the information
is available to mothers. In addition, studies using medication type to
delineate disease severity report good variability between categories and
significant correlations with other severity indicators (e.g., number of
joints involved and pain ratings) (Lustig
et al., 1996).
The child's functional status was determined by the Juvenile Arthritis
Functional Assessment Report (JAFAR) for parents. The JAFAR-P consists of 23
items that ask the parent to indicate whether the child is able to do certain
tasks (e.g., button shirt) all the time (0), sometimes (1),
or almost never (2) in the past week. Scores on the individual items
are summed, with higher scores indicating lower functional levels. The JAFAR-P
was validated by Howe and colleagues
(1991), who found that
children with JRA had scores significantly different from a control group of
healthy children on all but three items. The measure has good internal
consistency (Cronbach's 
=.93), and interrater agreement is indicated
by the significant correlation between parents' and children's scores. The
JAFAR-P was also significantly correlated with clinically measured levels of
disease and child functional status (Howe
et al., 1991).
Psychosocial stressors were measured in two domains; one examined mothers'
illness-related stress, and the other measured the stresses of daily life
unrelated to the illness. The measure of illness-related stress was based on
the work of Thompson et al.
(1993), in which mothers of
chronically ill children were asked to rate how stressful four illness-related
tasks were on a scale from not at all stressful (1) to very
stressful (100). The four illness tasks (as identified by
Moos & Tsu, 1977) were (1)
dealing with the child's medical problems and symptoms, (2) maintaining the
child's emotional well-being, (3) maintaining their own emotional well-being,
and (4) preparing for an uncertain future. For this, a summary score was used;
the correlation (uncorrected) of items with the sum score ranged from.70 to.85
( =.90).
Daily stress was assessed with the Daily Hassles Scale
(Kanner, Coyne, Schaefer, & Lazarus,
1981), a list of 117 potential hassles, such as "misplacing
or losing things," or "concerns about owing money."
Respondents were asked to (1) indicate the hassles that happened to them in
the past month and (2) rate the severity of those hassles from somewhat
severe (1) to extremely severe (3). A total daily hassles score
was calculated by summing the number of hassles and their severity ratings.
The scale has been found to have adequate test-retest reliability (.78 over 9
months) and good construct validity
(Kanner et al., 1981).
The Multidimensional Health Locus of Control (MHLC) Scale (Form A)
(Wallston, Wallston, & Devellis,
1978), an intrapersonal factor, was chosen to measure mothers'
perceived control over health. The scale is made up of 18 statements, and
respondents are asked to indicate agreement with each statement from
strongly disagree (1) to strongly agree (6). Although the
full scale yields three dimensions (Internal, Powerful Others, and Chance),
only the MHLC Internal and Powerful Others dimensions were used because of the
high negative correlation between the Internal and Chance subscales. The
authors report adequate internal consistencies for the dimensions (.67-.77).
Validity has been shown by its high correlation with an earlier 11-item test
of health locus of control (Levenson,
1974) and the significant correlation between the respondent's
health status and MHLC scores (Wallston et
al., 1978).
Maternal stress processing was assessed with the Impact on the Family Scale
(IOF; Stein & Riessman,
1980). The IOF is a 24-item instrument that assesses the
perception of the family impact of childhood illness. For each item,
respondents indicate their level of agreement on a 4-point scale from
strongly agree (1) to strongly disagree (4). Examples of
items include "We see family and friends less because of the
illness," and "Additional income is needed in order to cover
medical expenses." The internal consistency of this scale is reported as
good (Cronbach's =.88). Several studies have used this scale as a
measure of maternal appraisal of the family impact of the child's condition
(e.g., Ireys & Silver,
1996; Lustig et al.,
1996). Construct validity has been demonstrated by the scale's
association with medical and psychological variables among children with
various chronic health conditions (e.g.,
Ireys & Silver, 1996).
The Family Environment Scale (FES) assessed the social climate of the
family (Moos & Moos,
1981). The FES is a 90-item questionnaire validated across a
variety of populations, and it has good content and face validity
(Moos, 1990). Respondents are
asked to indicate whether each statement is true or false
for their families. Kronenberger and Thompson
(1990) completed a
higher-order factor analysis on the FES to examine the environments of 109
families with chronically ill children. For this study, a shortened version of
the FES made up of 63 items from Kronenberger and Thompson's
(1990) Support and Conflict
dimensions was used, as these subscales have adequate internal consistencies
(Cronbach's range:.68-.84).
Respondents were asked to indicate family income in categories ranging from less than $10,000/yr to $100,000 or greater/yr. Similarly, education levels were indicated in categories ranging from less than 7 years to graduate/professional training.
Extrafamilial social support was obtained with the Social Provisions Scale
(SPS) (see Mancini & Blieszner,
1992). The scale contains 24 items measuring perceptions of social
support. Items include "There are people who depend on me for
help," and "There is no one I feel comfortable talking about
problems with." Respondents indicate agreement with each statement from
strongly disagree to strongly agree. Because this measure
was employed to assess extrafamilial social support, respondents answered
questions as applied to nonfamily members. The authors report
adequate internal consistency (Cronbach's range:.66-.76). The
significant association between SPS scores and measures of social networks,
relationship satisfaction, loneliness, and depression document construct
validity (e.g, Cutrona & Russell,
1987).
The Psychiatric Symptom Index (PSI) assessed mothers' psychological
distress. The PSI is a broadband scale measuring symptoms of depression and
anxiety. Although not meant to assess psychiatric "caseness,"
scores of 20+ indicate high symptoms. Respondents rate the frequency of 29
symptoms such as "feel nervous or shaky inside" and "feel
downhearted or blue" from never to very often
(Ilfeld, 1976). The authors
report good internal consistency ( =.91), and content validity has been
reported comparable to the Center for Epidemiologic Studies-Depression Scale
and the State-Trait Anxiety Inventory
(Okun, Stein, Bauman, & Silver,
1996).
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Results |
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Descriptive Findings
Descriptive statistics were calculated on the measures to check normality assumptions and to ensure adequate variability. All of the measures had normal probability plots, and variabilities were good. Plots of residuals were evenly scattered, suggesting the appropriateness of an additive model. Means and standard deviations were calculated, and internal consistency determined with Cronbach's alpha. Table I shows measure characteristics. Because the alpha for the internal locus of control scale was very low for this sample, it was dropped from the analysis.
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On average, this sample of mothers reported much higher levels of
psychological symptoms than a normative sample. The mean PSI for the mothers
in this study was 26.54 (SD = 14.87); 72% fell into Ilfeld's
(1976) "high"
symptom category. This is an important finding, as it indicates that these
mothers of children with JRA do report high levels of psychological distress.
Other studies of mothers of children with JRA and mothers of children with
other chronic illnesses corroborate this finding (e.g.,
Breslau et al., 1982;
Lustig et al., 1996;
Wallander, Varni, Babani, Banis, DeHaan,
et al., 1989).
A correlation matrix of all potential independent variables and the
dependent variable was calculated to determine relationships
(Table II). Although all
correlations were in the expected direction, the large number of significantly
correlated measures indicated potential problems with collinearity. Therefore,
all variables were centered (means subtracted) as recommended by Holmbeck
(1997) to reduce problems with
multicollinearity and to better interpret significant interaction effects.
Correlations were also calculated between the dependent variable and time
since diagnosis, maternal age, child age/gender, number of children in family,
marital status, and race to determine the need to control for these variables.
Because none of the correlations were statistically significant, hypothesis
testing were completed with no adjustment.
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Hypothesis Testing
The first hypothesis stated that psychosocial stressors would predict
psychological distress over and above children's illness severity and
functional status. I expected that higher illness stress and daily hassles
would predict increased psychological symptoms. Linear regression was
completed with forward selection to test this hypothesis. First, the measures
of children's illness severity and functional status were forced into the
model; then forward selection was used for the entry of mothers'
illness-related and daily hassles stress.
Neither children's illness severity nor functional status statistically predicted mothers' psychological distress, and none of the variance in distress was explained, F(2, 90) =.54, p <.59, R2 =.01. Mother's daily hassles stress entered next and was significant, partial F = 29.33, p <.0001, R2 =.25; finally, illnessrelated stress was selected, partial F = 5.47, p <.02; R2 =.05. Overall, 30% of the variance was explained, with mothers' daily hassles stress the strongest predictor of psychological symptoms. Unstandardized betas were in the expected direction, signifying that psychological symptoms increased with increases in illness stress and daily hassles.
The second hypothesis stated that intrapersonal, social ecological, and
stress processing factors would moderate the relationship between psychosocial
stress and the psychological symptoms of the mothers. Regressions were
completed to test the intrapersonal, social ecological, and stress processing
resistance factors separately; because of the large number of social
ecological factors, three regressions tested similar social ecological
factors: family support and extrafamilial support, maternal education and
income, and conflict. For each regression, the two types of psychosocial
stressor scores (illness stress and daily hassles) were regressed onto the
outcome measure (psychological symptom scores). Then, intrapersonal, stress
processing, or social ecological variables were entered, and finally the
interaction terms between the stress and resistance factors. Significant
interaction terms indicated that the resistance factors moderated the
relationship between maternal psychosocial stress and psychological symptoms.
Because regression tends to underestimate the effect size of interaction terms
(Holmbeck, 1997), the
interpretation of variables as significant at p levels of less
than.10 was deemed appropriate.
Table III shows significant regression models. There was a trend toward the moderation of the stress-processing factor (appraisal) on the relationship between illness-related stress and mothers' psychological symptoms, F = 2.79, p <.10, and mothers' education level moderated the relationship between her daily hassles stress and psychological symptoms, F = 4.24, p <.05.
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Figures 1 and 2 show the stress-buffering effects of more positive appraisal and high education. More positive appraisal (i.e., appraisal scores above the mean) of the illness situation tended to be associated with decreased psychological symptoms, even when illness stress was high (above the mean), and higher levels of education (above the mean) were associated with decreased psychological symptoms, even when daily hassles stress was high (above the mean).
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Discussion |
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Disease severity and the child's functional limitations were not predictive of mothers' reported psychological symptoms. However, as hypothesized, greater illness-related and daily hassles stress were significantly associated with increased psychological symptoms after disease severity and functional status were taken into account. The literature regarding outcomes of mothers of chronically ill children generally agrees that disease severity is not related to psychological outcome (e.g., Canning et al., 1996
; Wallander, Varni,
Babani, Banis, DeHaan, et al., 1989). However, most suggest that a
child's functional status has a much larger impact on maternal psychological
functioning (e.g., Canning et al.,
1996; Timko, Stovel, &
Moos, 1992). It is possible that, because a large number of the children had little or no functional disabilities (52% had functional status scores under 3), this sample of children was not functionally limited enough to increase psychological distress in their mothers. However, it also may be that other variables (e.g., perceived psychosocial stress) are more important to the development of psychological symptoms in mothers than their child's functional status.
Research on stress and chronic illness has consistently found
illness-related stress to be a principal source of adjustment problems in
mothers of chronically ill children
(Thompson & Gustafson,
1996). This makes intuitive sense, as the stress associated with
frequent doctor's visits, daily medication regimens, and facing an uncertain
future can be extremely daunting.
Additionally, these findings support earlier reports of the great impact of
everyday hassles on mothers (e.g.,
Thompson et al., 1993).
Unfortunately, chronic illness researchers often neglect this factor. A focus
on stress associated with daily hassles in research—in its own right as
well as for potential additivity effects with illness-related stress—is
indicated. This finding also has clinical implications; whereas many
professionals focus on ways of limiting illness-related stress, it may be
important to help reduce stress resulting from other aspects of the mother's
life.
This study is the first to investigate moderators of maternal stress and adaptation within the disability-stress-coping model. As discussed above, psychosocial stress predicted maternal adaptation. However, maternal appraisal and education moderated this relationship. That is, mothers interpreting the illness in a more positive light reported fewer psychological symptoms even in the face of high illness stress, and more highly educated mothers reported fewer symptoms even when daily stress was high. Therefore, knowing mothers' everyday and illness stress levels, educational levels, and illness appraisal is important in understanding variations in psychological adaptation, which has both research and clinical implications.
Professionals working with families of children with JRA may be able to buffer the effects of stress by increasing the positive appraisal of mothers, perhaps by pairing mothers successful at managing the JRA with those who appraise the illness as overwhelming. This may allow a situation once seen as threatening to become viewed as more manageable.
The moderating effect of maternal education on the relationship between the stress of daily hassles and psychological symptoms may be explained in that more highly educated women may have better access to or knowledge of resources that can reduce everyday nuisances before they take a psychological toll. Unfortunately, because maternal education level is usually entered as a control variable or examined for main effects only, this possibility has not been tested empirically. A qualitative analysis in which mothers of differing educational levels are asked what resources they use to deal with everyday stress would be useful. If knowledge of and access to social resources are responsible for the moderating effects of maternal education on the relationship between psychosocial stress and psychological outcome, then interventions designed to increase mothers' knowledge of social resources might prove beneficial to all mothers.
It is interesting that maternal appraisal and education moderated different types of stress for these mothers. A possible explanation for this is that structural aspects of the family (e.g., education) are more important when it comes to handling "tangible" everyday nuisances, whereas internal processes are more important in determining reactions to more "intangible" situational stressors such as those resulting from the child's illness.
The lack of significant moderating effects for most of the factors hypothesized as important is curious, especially given that only those factors most strongly cited in the literature as potential buffers were examined. However, it is possible that the lack of findings was due to the relatively small and homogeneous sample studied. The use of structural equation modeling, which may reduce measurement error when interactions are being examined, may be of assistance in future studies.
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Acknowledgments |
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This study is based on a doctoral dissertation submitted to the University of North Carolina at Greensboro. I gratefully acknowledge Dr. Sara Sinal of Wake Forest University School of Medicine, Dr. Ann Reed of the University of North Carolina at Chapel Hill, Dr. Steve Goodman of Delray Beach, Florida, and Dr. Robert Nickeson, Jr., of Clearwater, Florida, for help in identifying and recruiting patients with JRA.
Received March 10, 2000; revision received July 3, 2000; accepted November 13, 2000
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