Journal of Pediatric Psychology, Vol. 17, No. 5, 1992, pp. 573-585
Robert J. Thompson, Jr., 2 Kathryn E. Gustafson, Kim W. Hamlett, and Alexander Spock Duke University Medical Center Received October 1, 1991; accepted February 21, 1992
Assessed the role of illness parameters, demographic parameters, and hypothesized psychosocial I mediational processes in the psychological adjustment of 68 mothers of children and adolescents (7-17 years of age) with cystic fibrosis. Together the illness and demographic parameters accountedfor only 13-15% of the variance in maternal adjustment. However, the hypothesized meditaional processes accounted for 35—40% increment in the variance in maternal adjustment. More specifically, maternal adjustment was associated with lower levels of perceived daily stress, less use ofpalliative coping methods, andfamily functioning characterized by high levels of supportiveness. KEY WORDS: cystic fibrosis; stress; coping; family functioning; psychosocial adjustment.
Parents of children with cystic fibrosis (CF) are subjected to high levels of stress and are at increased risk for psychological disturbance (Lewiston, 1985). Although resiliency in the face of adversity is impressive and good adjustment is possible (Thompson, 1985), relatively high frequencies of psychiatric symp-
•This research project was supported by National Institute of Health Grant ROI HL 37548 to Robert J. Thompson, Jr. We gratefully acknowledge the contributions of Elizabeth Harrell, David J. Johndrow, and Susanne Meghdadpour to data gathering and management. 2 AII correspondence should be sent to Robert J. Thompson, Jr., Division of Medical Psychology, Duke University Medical Center, Box 3362, Durham, North Carolina 27710. 573 0146-8693/92/l00W>573S06.5Ort> © 1992 Plenum Publishing Corporation
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Stress, Coping, and Family Functioning in the Psychological Adjustment of Mothers of Children and Adolescents with Cystic Fibrosis1
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toms, particularly depression and anxiety, have been reported among mothers of CF patients (Breslau, Staruch, & Mortimer, 1982; Bywater, 1981; Lawler, Nakielmy, & Wright, 1966; Walker, Ford, & Donald, 1987). Little is known about the within-group processes that contribute to the variability in the psychological adjustment of mothers of children with CF. One factor that has received some attention is the severity of the child's CF. In general, maternal distress has not been strongly related to medical ratings of severity. However, maternal stress (Walker et al., 1987) and distress (Frydman, 1980) have been more strongly related to maternal perceptions of illness severity. Theoretically and conceptually driven studies are now needed to delineate how illness parameters and psychosocial proceses interact in the adjustment of mothen of children with CF. A transactional stress and coping model is demonstrating utility in guiding research, integrating findings, and informing clinical practice (Thompson, 1985). The application of this model to the psychological adjustment of mothers of children with CF is depicted in Figure 1. Chronic childhood illness is viewed as a potential stressor to which the child and family systems endeavor to adapt. Outcome in this study is the psychological adjustment of mothers. The illnessadjustment-outcome relationship is a function of the transactions of illness parameters with demographic parameters and psychosocial/mediational processes also known to potentially affect adjustment. The illness parameter is severity of the child's cystic fibrosis as reflected in overall clinical status. The demographic parameters include child age and gender and socioeconomic status (SES). However, the focus of the model is on individual and family processes that are hypothesized to further mediate the illness-outcome relationship over and above the contribution of illness and demographic parameters. Guided by the cognitive stress and coping model developed by Lazarus and colleagues (Lazarus & Folkman, 1984), the selection of maternal psychosocial/mediational processes to be incorporated into the initial model was based on two criteria: empirical evidence that the process serves to reduce the impact of stress; and saliency as a potential intervention target. Three types of psychosocial/mediational processes were included: (a) the cognitive processes of appraisals of stress (Lazarus & Folkman, 1984) associated with daily hassles (Kanner, Coyne, Schaefer, & Lazarus, 1981) and chronic illness tasks (Moos & Tsu, 1977) and expectations of efficacy (Bandura, 1977) in dealing with chronic illness tasks and of locus of control (Strickland, 1978); (b) the utilization of palliative and/or adaptive methods of coping (Felton & Revenson, 1984); and (c) social support in terms of family functioning (Daniels, Moos, Billings, & Miller, 1987). There are yet insufficient theoretical or empirical bases for postulating path relationships among and between the illness and demographic parameters and psychosocial/mediational processes. Rather, the focus is on assessing individual,
.SES
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. Severity
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JL
.Conflicted
. Adaptive .Controlling
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Fig. 1. Stress and Coping Model applied to maternal adjustment to child's CF.
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. Expectations
II lness Tasks
Daily Hassles
.Appraisal-Stress
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incremental, and collective contributions of these parameters and hypothesized mediational processes to maternal adjustment. We hypothesized that (1) some mothers of children with CF will report clinically significant levels of psychological distress and that (2) mothers with poor adjustment will not differ significantly from mothers with good adjustment in terms of illness and demographic parameters but will have higher levels of perceived stress, both daily and illness related, lower levels of efficacy expectations and internal health locus of control expectations, higher levels of palliative coping, and family functioning characterized by lower levels of support and higher levels of conflict than mothers with good adjustment. It is also hypothesized that (3) mediational processes will account for independent and significant increments in the variance in maternal adjustment over and above that accounted for by illness and demographic parameters. METHOD Subjects
The subjects were participants in a stress and coping project of the Cystic Fibrosis Center. The 125 children and adolescents (7-17 years of age) on the active clinic roster and their parents were invited to participate. Of these, 20 declined and another 25 did not respond after two follow-up invitations. Of the 80 who enrolled in the study, 1 subsequently withdrew and 1 was dropped in accordance with the exclusionary criteria because of multiple congenital anomalies, resulting in a sample of 78. Of these, 68 mothers and 5 fathers and their children completed the protocol, but 5 protocols were incomplete and were excluded from analysis. Since there were too few fathers for data analysis, the 68 mothers constituted the study sample for this report. At the time of the evaluation, 54 were married and 14 were not. The number of children in the family ranged from one to nine, with 91% of the sample having three or fewer children. Of the 68 children with CF, 40 were male and 28 female, with a mean age of 135.09 months, and 7 (10.3%) had a sibling with CF. There were no significant differences between the 55 nonparticipants (20 refused + 25 no response + 5 incomplete + 5 father completed) and the study sample (n = 68) in patient gender, x 2 (l. N = 123) = 1.16, p = ns; patient age, F(l, 118) = 0.02, p = ns; or three measures of pulmonary functioning, Wilks' lambda = 0.96; F(3, 116) = 1.52, p = ns. Procedure The Institutional Review Board approved protocol included structured interviews conducted by psychologists (K.G. and K.H.) with patients and parents and
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self-report inventories that were completed during a regular clinic visit to the Cystic Fibrosis Center. The clinical interviews were conducted independently of, and blind to, the results of the self-report inventories. Consent was obtained from both the patient and parent. Illness Parameters
Generic Parameter SES was assessed using the two-factor index of social position (Hollingshead, 1957). There was a relatively balanced distribution of the sample across the five SES levels: I (high), n = 8 (11.8%); II, n = 13 (19.1%); HI, n = 21 (30.9%), IV, n = 17 (25.0%); and V, n = 9 (13.2%). Cognitive Processes Daily Stress was assessed by having mothers complete the 117-item Hassles Scale (Kanner et al., 1981) that yields a measure (sum) reflecting both frequency and severity ratings. A structured interview was utilized to assess maternal appraisal of stress and expectations of efficacy in relation to four illness-related
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Severity of cystic fibrosis was assessed through the Shwachman Clinical Evaluation System (Shwachman & Kulczycki, 1958). This rating system assesses child functioning in four areas: activity, pulmonary physical findings and cough, growth and nutrition, and chest X-ray film findings. Total scores range from 20 to 100 with higher scores indicating better functioning and lesser severity. The Shwachman was completed by the medical staff based on findings from the clinic visit. Consistent with age (M = 11.25 years), the study sample was relatively healthy with 33 (49.3%) and 28 (41.8%) patients within the very good (86-100) and good (71-85) categories, respectively, 6 (8.3%) patients in the mild impairment (56-70) category, and none in the poor (^55) category. Pulmonary function testing was routinely obtained at each clinic visit in accordance with the American Thoracic Society (1987) statement on the standardization of spirometry, and thus was available on both study participants and nonparticipants. Relatively few patients demonstrated moderately (40—59) or severely ( s 39) impaired functioning in terms of Forced Vital Capacity (FVC) or Forced Expiratory Volume at 1 second (FEV). However, in terms of Forced Expiratory How (FEF 25 _ 75 ), 15 (22.1%) of the patients demonstrated moderately impaired and 25 (36.8%) demonstrated severely impaired functioning. The FEF reflects small airway functioning which is frequently the earliest indicator of pulmonary impairment.
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tasks identified by Moos and Tsu (1977): (a) dealing with the child's medical problems and symptoms; (b) maintaining the child's emotional well-being; (c) maintaining their own emotional well-being; and (d) preparing for an uncertain future. Illness Stress was assessed by asking mothers to identify stress they experienced in relation to each of the four illness tasks and to rate how stressful each had been on a scale ranging from (not stressful at all) (1) to very stressful (100). In addition to the four stress ratings, a sum score was derived (Cronbach alpha = .76). Efficacy was assessed by asking mothers to rate how certain they were that they could handle each task on a scale ranging from great uncertainty (1%) to complete certainty (100%). In addition to the four efficacy ratings, a sum score was derived (Cronbach alpha = .76). Mothers' expectations of control over health were assessed through the Multidimensional Health Locus of Control Scales (Wallston, Wallston, & DeVellis, 1978) which yielded scores for three dimensions: Internal, Powerful Other, and Chance.
Methods of Coping The conceptualization of coping developed by Lazarus and Folkman (1984) was adopted. In this view, stress is not inherent in an event or situation, but arises from the person-environment transaction. Coping is the multidimensional process that refers to the ways in which people deal with stress and has two main functions. One function is to alter the troubled transaction through efforts directed at the environment or the self. Another function of coping is palliation, that is, to regulate emotional states that are associated with or result from stress. Coping was assessed using the 65-item Ways of Coping questionnaire, developed by Folkman and Lazarus (1980) and augmented by Felton, Revenson, and Henrichsen (1984) and by Vitaliano, Russo, Carr, Maiuro, and Becker (1985). Mothers were instructed to indicate on a 5-point scale how often (never, seldom, sometimes, often, most of the time) she utilized each coping behavior in relation to the overall situation of their child's illness. Factor analytic studies have delineated both broad-band methods of coping, such as emotion-focused and problem focused (Folkman & Lazarus, 1980), and specific subtypes (Felton et al., 1984; Vitaliano et al., 1985). With overlapping items removed, scores obtained on each of these subscales were summed to yield two broad-band measures of coping to reflect the two primary functions of coping postulated by Lazarus and Folkman (1984). Palliative coping was the sum of the item scores constituting the emotion focused, avoidance, wishful thinking, and self-blame factors (Cronbach alpha = .85). Adaptive coping is the sum of the item scores constituting the problem focused, cognitive restructuring, seeking information, and seeking social support factors (Cronbach alpha = .91).
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Social Support: Family Functioning
Psychosocial Adjustment Symptom Checklist 90-Revised (SCI^90-R; Derogatis, 1983) is a 90-item self-report measure of psychological distress along nine symptom dimensions: depression, anxiety, somatization, obsessive-compulsive, interpersonal sensitivity, hostility, phobic anxiety, paranoid ideation, and psychoticism. The Global Severity Index (GSI) combines information on number of symptoms and intensity of distress. Raw scores on the nine symptom dimensions and the GSI were converted to T scores using nonpatient norms for females. T scores > 63 (i.e., above the 90th percentile) are considered to be in the clinical range.
RESULTS Maternal Psychological Adjustment To address Hypothesis 1 regarding maternal psychological adjustment, overall poor versus good adjustment was determined in accordance with the established criteria for "caseness." That is, poor adjustment was defined as GSI or any two of the nine symptom dimensions with T score 5: 63. While 45 mothers (66.2%) demonstrated good adjustment, 23 (33.8%) mothers met the criteria for poor adjustment. Elevations into the clinical range of distress (T 2: 63) occurred for 14 (20.6%) mothers on depression and 12 (17.6%) mothers on anxiety. Good Versus Poor Maternal Adjustment To address Hypothesis 2, good and poor adjustment subgroups were formed based on the criteria for caseness. Then differences between subgroups were
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The Family Environment Scale (FES; Moos & Moos, 1981) consists of 90 true-false items that form 10 subscales. Three higher order FES factors were delineated and replicated with families with chronically ill children, (Kronenberger & Thompson, 1990). The Supportive factor reflected the degree of mutual commitment and support for expression of feelings and for active participation in social and recreational activities (Cronbach alpha = .81). The Conflicted factor reflected high conflict, poor organization, and a lack of mutual commitment and support (Cronbach alpha = .84). The Controlling factor reflected emphasis upon control, ethical and religious values, achievement orientation, and a lack of independence (Cronbach alpha = .65).
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assessed on each of the demographic and illness parameters and psychosocial/mediational processes of the stress and coping model (see Figure 1). To control for Type I error, MANOVA was utilized when there were multiple measures of a domain, such as coping methods and family functioning. Significant MANOVA results were then followed by ANOVA. As hypothesized, maternal adjustment subgroups did not differ significantly in the severity of child illness, F ( l , 65) = 1.43, p = ns, or in the demographic parameters of gender, x 2 (1, N = 68) = 0.06, p = ns, child age, F ( l , 66) = 0.16, p = ns; or SES, F ( l , 66) = 2.23, p = ns. However, the poor adjustment subgroup had higher levels of stress appraisal regarding daily hassles, F(l, 65) = 18.70, p < .0001; and illness tasks, F(2, 65) = 5.15;p < .05; and lower efficacy expectations regarding illness tasks, F(2, 65) = 6.45, p < .01, than the good adjustment subgroup. There were no significant subgroup differences across the Internal, Powerful Other, and Chance health locus of control expectations (Wilks' lambda = 0.94) F(3, 64) = 1.36, p = ns. Significant subgroup differences also occurred in terms of palliative and adaptive coping methods (Wilks' lambda = 0.74) F(2, 65) = 11.24, p < .0001, and the Supportive, Conflicted, and Controlling dimensions of family functioning (Wilks' lambda = 0.73) F(3, 64) = 7.92, p < .0001. The poor adjustment subgroup demonstrated higher levels of use of palliative coping, F(l, 66) = 22.71, p < .0001; lower levels of family supportiveness, F ( l , 66) = 7.62, p < .008; and higher family conflict, F ( l , 66) = 15.92, p < .0002, than the good adjustment subgroup.
Mediation of Maternal Adjustment Hierarchical multiple regression analysis was undertaken to address Hypothesis 3 regarding the unique and combined contributions of variables of the stress and coping model to maternal psychological distress in terms of the specific symptoms dimensions of depression and anxiety. Order of entry was determined a priori, in accordance with the stress and coping model, to reflect the increment in adjustment accounted for by the hypothesized psychosocial/ mediational processes over and above that accounted for by demographic and illness parameters. Thus, the illness parameter of clinical severity (Shwachman score) was forced in first followed by the demographic parameters of child gender, age, and SES. Then the hypothesized mediational processes were allowed to enter in a stepwise procedure if they met the criterion of adding a significant (p < .05) increment in variance. These mediational variables included mother's appraisal of daily stress, stress and efficacy ratings regarding the four CF illness tasks as well as the stress sum and efficacy sum scores, the three health locus of control expectancy scores, palliative and adaptive coping, and the
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Table I. Multiple Regression of Maternal Depression and Anxiety Symptoms Scores Dependent and independent variables Maternal depression Shwachman SES Child age Gender Daily stress Family supportiveness Palliative coping Maternal anxiety Shwachman SES Gender Child age Daily stress Efficacy regarding child's EWBC Family controlling "Standardized regression coefficient. b F test on change in R2. ^Emotional well-being. d p < .05. 'p < .01. /p < .001.
b°
Change inR 2
Fb
Cumulative R2
-.04 -.03 .04 -.00 .47 -.26 .23
.03 .09 00 .01 .30 .07 .03
0.17 0.08 0.14 0.00 16.21/ 6.07rf 4.16rf
.03 .12 .12 .13 .43 .50 .53
-.21 .07 -.14 -.15 .42 -.28 .24
.04 .07 .03 01 .22 .08 .05
4.31'' 0.37 2.22 2.29 15.05/ 8.06'
.04 .11 .14 .15 .37 .45 .50
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three family functioning factor scores. Thus, the regression analysis was hierarchical between sets and stepwise within sets (Cohen & Cohen, 1983). The final steps in the multiple regression analysis are depicted in Table I for both depression and anxiety. In terms of maternal depression, neither the illness parameter of severity nor the demographic parameters accounted for significant portions of variance and together accounted for only 13% of the variance. Each of the mediational processes of daily stress, family supportiveness, and maternal use of palliative coping added significant increments in variance. Together, these variables accounted for 53% of the variance in maternal depression. In terms of maternal anxiety, illness severity accounted for a significant amount of variance. The demographic parameters did not account for significant increments in variance and together the illness and demographic parameters accounted for 15% of the variance. Each of the mediational processes of daily stress, maternal efficacy expectations regarding maintaining their child's emotional well-being, and the extent to which family functioning is characterized by control added significant increments in variance. Together, these variables accounted for 50% of the variance in maternal anxiety.
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Additional Analyses
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The question arises regarding the extent to which potentially important variables that have not been included in the model, such as dimensions of family structure, could alter the obtained results. However, follow-up analyses indicated that there was no significant difference between the subgroup of mothers who were married (n = 54) versus those not married (n = 14) in anxiety, F(l, 66) = 0.01, p = ns; or depression, F(l, 66) = 0.95; p = ns. Also, the number of children in the family was not significantly correlated with maternal depression (r = .03) or maternal anxiety (r = .06). Furthermore, the regression analysis was redone to include marital status and number of children, but neither added a significant increment to the variance in maternal adjustment. Another question concerns the extent to which the findings reflect method variance with regard to the interrelationship of the maternal self-report measures of mediational processes and adjustment. While the hierarchical multiple regression analyses clarified the relative and independent contributions among the mediational processes to psychosocial outcome, univariate correlations indicated low to moderate levels of shared variance among the mediational processes. For example, palliative coping correlated moderately with daily stress (r = .52, p < .0001) but less strongly with the sum of stress ratings regarding illness tasks (r = .28, p < .02) and negatively with family supportiveness (r = —.24, p < .05). Even between the measures of daily stress and the sum of stress ratings regarding illness tasks, there was only 25% shared variance (r = .50, p < .0001).
DISCUSSION The findings of this study indicate that approximately two thirds of mothers of children and adolescents with CF met the criteria for good psychological adjustment. The 34% rate of overall poor maternal adjustment was consistent with previous findings of moderate frequencies of poor parental adjustment (Gayton, Friedman, Tavormina, & Tucker, 1977). These findings also add support to the existing evidence (Frydman, 1980; Walker et al., 1987) that parental distress is not strongly related to the child's illness severity measured objectively. Furthermore, maternal adjustment also was not strongly related to the demographic parameter of child age or gender and SES. Together, the illness and demographic parameters accounted for only 13—15% of the variance in maternal psychological distress. In contrast, support was provided for the hypothesized role of maternal psychosocial/mediational processes in maternal anxiety and depression. Poor versus good maternal adjustment was associated with higher levels of daily stress and stress regarding illness tasks, lower efficacy ratings, more use of palliative
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coping methods, lower levels of family supportiveness, and higher levels of family conflict. The hypothesized mediational processes accounted for 35-40% of the variance in maternal distress over and above the 13-15% accounted for by the demographic and illness parameters. Among the mediational processes, considerable support was provided for the role of appraisal of stress in maternal adjustment. However, it was not the stress associated with CF illness tasks but the stress reflected in daily hassles that was most strongly related to maternal adjustment and which accounted for the largest independent increment in the variance in maternal depression (30%) and anxiety (22%). Hassles are defined as "the irritating, frustrating, distressing demands that to some degree characterize everyday transactions with the environment" (Kanner et al., 1981, p. 3). The endorsement of hassle items reflects the individual's cognitive appraisal and phenomenological perception of their daily lives as stressful. It is reasonable to expect that the routine environment and maternal appraisal of the stress of daily hassles might be influenced by caring for a child with CF. However, there was only 25% shared variance in mothers' appraisal of the stress of daily hassles and stress associated with illness tasks. Subsequent studies need to focus on delineating the components of daily hassles for mothers of children with CF. While daily stress accounted for the largest increment in variance in both maternal anxiety and depression, different mediational processes added significant subsequent increments in the variance in anxiety and depression. In terms of depression, lower levels of family supportiveness and more use of palliative coping were significant contributors. In terms of anxiety, low maternal expectations of efficacy for the specific illness task of maintaining their child's emotional well-being, and family functioning characterized by higher levels of control were significant contributors. Whether this differential pattern has implications for preventing or ameliorating different manifestations of maternal psychological distress needs to await replication with studies that utilize structured clinical interviews to more fully assess symptoms of distress. This study has several limitations. First, the conceptual model that guided this study is not yet fully formulated. The primary focus was to assess the contributions to adjustment of mediational processes over and above the contribution of illness severity and demographic parameters. The full complement of direct and indirect paths remain to be formulated and tested. Second, the question arises as to the extent to which the findings represent method variance since self-report measures and ratings were used to reflect both adjustment and mediational processes. However, the findings from the univariate and multiple regression analyses indicate that the same construct or domain is not being tapped by various measures. Now that maternal distress in relation to their child's CF has been empirically demonstrated, future studies should include structured clinical interviews to delineate the type and severity of maternal distress. Third, these
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cross-sectional findings provide an incomplete basis for formulating intervention goals and methods. The next step in this line of research is to address the stability and change over time in the interrelationship of maternal adjustment and illness and demographic parameters and psychosocial/mediational processes.
REFERENCES
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American Thoracic Society. (1987). Standardization of spirometry. American Review of Respiratory Diseases. 136, 1285-1298. Bandura, A. (1977). Social learning theory. Englewood Cliffs, NJ: Prentice-Hall. Breslau, N., Staruch, K. S., & Mortimer, F. A. (1982). Psychological distress in mothers of disabled children. American Journal of Disease in Children, 136, 682-686. Bywater, E. M. (1981). Adolescents with cystic fibrosis: psychosocial adjustment. Archives of Disease in Childhood, 56, 538-543. Cohen, J., & Cohen, P. (1983). Applied multiple regression! correlation analysis for the behavioral sciences. Hillsdale, NJ: Erlbaum. Daniels, D., Moos, R. H., Billings, A. G., & Miller, J. J., Ill (1987). Psychosocial risk and resistance factors among children with chronic illness, healthy siblings, and healthy controls. Journal of Abnormal Child Psychology, 15, 295-308. Derogatis, L. R. (1983). Symptom Checklist-90-Revised: Administration, Scoring, and Procedures Manual II. Towson, MD: Clinical Psychometric Research. Felton, B. J., & Revenson, T. A. (1984). Coping with chronic illness: A study of illness controllability and the influence of coping strategies on psychological adjustment. Journal of Consulting and Clinical Psychology, 52, 343-353. Felton, B. J., Revenson, T. A., & Henrichsen, G. A. (1984). Stress and coping in the explanation of psychological adjustment among chronically ill adults. Social Science and Medicine, 18, 889-898. Folkman, S., & Lazarus, R. S. (1980). An analysis of coping in a middle-aged community sample. Journal of Health and Social Behavior, 21, 219-239. Frydman, M. I. (1980). Perception of illness severity and psychiatric symptoms in parents of chronically ill children. Journal of Psychosomatic Research, 24, 361-369. Gayton, W. F., Friedman, S. B.,Tavormina, J. F., & Tucker, F. (1977). Children with cystic fibrosis: 1. Psychological test findings of patient, siblings, and parents. Pediatrics, 59, 888-894. Hollingshead, A. B. (1957). Two factor index of social position. New Haven, CT: Yale University Department of Sociology. Kanner, A. D., Coyne, J. C , Schaefer, C , & Lazarus, R. S. (1981). Comparison of two modes of stress measurements: Daily Hassles and Uplifts versus Major Life Events. Journal of Behavioral Medicine, 4, 1-39. Kronenberger, W., & Thompson, R. J., Jr. (1990). Dimensions of family functioning in families with chronically ill children: A higher order factor analysis of the family environment scale. Journal of Clinical Child Psychology, 19, 380-388. Lawler, R. H., Nakielmy, W., & Wright, N. A. (1966). Psychological implications of cystic fibrosis. Canadian Medical Association Journal, 94, 1043-1046. Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer. Lewiston, N. J. (1985). Psychosocial impact of cystic fibrosis. Seminars in Respiratory Medicine, 6, 321-332. Moos, R. H., & Moos, B. S. (1981). Family Environment Scale Manual. Palo Alto, CA: Consulting Psychologists Press. Moos, R. H., & Tsu, V. D. (1977). The crisis of physical illness: an overview. In R. H. Moos (Ed.), Coping with physical illness (pp. 3-21). New York: Plenum Press. Shwachman, H., & Kulczycki, L. L. (1958). Long-term study of one hundred five patients with cystic fibrosis: Studies made over a 5-to-14 year period. American Journal of Diseases in Children, 96, 6-15.
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Strickland, B. R. (1978). Internal-external expectancies and health-related behaviors. Journal of Consulting and Clinical Psychology, 46, 1192-1211. Thompson, R. J., Jr. (1985). Coping with the stress of chronic childhood illness. In A. N. O'Quinn (Ed.), Management of chronic disorders of childhood (pp. 11-41). Boston: G. K. Hall. Vitaliano, P. P., Russo, J., Carr, J. E., Maiuro, R. D., & Becker, J. (1985). The Ways of Coping Checklist: Revision and psychometric properties. Multivariate Behavioral Research, 20, 3-26. Walker, L. S., Ford, M. B., & Donald, W. D. (1987). Cystic fibrosis and family stress: Effects of age and severity of illness. Pediatrics, 79, 239-246. Wallston, K. A., Wallston, B. S., & DeVellis, R. (1978). Development of the Multidimensional Health Locus of Control (MHLC) Scales. Health Education Monograph, 6, 160-170.
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Robert J. Thompson, Jr., 2 Kathryn E. Gustafson, Kim W. Hamlett, and Alexander Spock Duke University Medical Center Received October 1, 1991; accepted February 21, 1992
Assessed the role of illness parameters, demographic parameters, and hypothesized psychosocial I mediational processes in the psychological adjustment of 68 mothers of children and adolescents (7-17 years of age) with cystic fibrosis. Together the illness and demographic parameters accountedfor only 13-15% of the variance in maternal adjustment. However, the hypothesized meditaional processes accounted for 35—40% increment in the variance in maternal adjustment. More specifically, maternal adjustment was associated with lower levels of perceived daily stress, less use ofpalliative coping methods, andfamily functioning characterized by high levels of supportiveness. KEY WORDS: cystic fibrosis; stress; coping; family functioning; psychosocial adjustment.
Parents of children with cystic fibrosis (CF) are subjected to high levels of stress and are at increased risk for psychological disturbance (Lewiston, 1985). Although resiliency in the face of adversity is impressive and good adjustment is possible (Thompson, 1985), relatively high frequencies of psychiatric symp-
•This research project was supported by National Institute of Health Grant ROI HL 37548 to Robert J. Thompson, Jr. We gratefully acknowledge the contributions of Elizabeth Harrell, David J. Johndrow, and Susanne Meghdadpour to data gathering and management. 2 AII correspondence should be sent to Robert J. Thompson, Jr., Division of Medical Psychology, Duke University Medical Center, Box 3362, Durham, North Carolina 27710. 573 0146-8693/92/l00W>573S06.5Ort> © 1992 Plenum Publishing Corporation
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Stress, Coping, and Family Functioning in the Psychological Adjustment of Mothers of Children and Adolescents with Cystic Fibrosis1
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toms, particularly depression and anxiety, have been reported among mothers of CF patients (Breslau, Staruch, & Mortimer, 1982; Bywater, 1981; Lawler, Nakielmy, & Wright, 1966; Walker, Ford, & Donald, 1987). Little is known about the within-group processes that contribute to the variability in the psychological adjustment of mothers of children with CF. One factor that has received some attention is the severity of the child's CF. In general, maternal distress has not been strongly related to medical ratings of severity. However, maternal stress (Walker et al., 1987) and distress (Frydman, 1980) have been more strongly related to maternal perceptions of illness severity. Theoretically and conceptually driven studies are now needed to delineate how illness parameters and psychosocial proceses interact in the adjustment of mothen of children with CF. A transactional stress and coping model is demonstrating utility in guiding research, integrating findings, and informing clinical practice (Thompson, 1985). The application of this model to the psychological adjustment of mothers of children with CF is depicted in Figure 1. Chronic childhood illness is viewed as a potential stressor to which the child and family systems endeavor to adapt. Outcome in this study is the psychological adjustment of mothers. The illnessadjustment-outcome relationship is a function of the transactions of illness parameters with demographic parameters and psychosocial/mediational processes also known to potentially affect adjustment. The illness parameter is severity of the child's cystic fibrosis as reflected in overall clinical status. The demographic parameters include child age and gender and socioeconomic status (SES). However, the focus of the model is on individual and family processes that are hypothesized to further mediate the illness-outcome relationship over and above the contribution of illness and demographic parameters. Guided by the cognitive stress and coping model developed by Lazarus and colleagues (Lazarus & Folkman, 1984), the selection of maternal psychosocial/mediational processes to be incorporated into the initial model was based on two criteria: empirical evidence that the process serves to reduce the impact of stress; and saliency as a potential intervention target. Three types of psychosocial/mediational processes were included: (a) the cognitive processes of appraisals of stress (Lazarus & Folkman, 1984) associated with daily hassles (Kanner, Coyne, Schaefer, & Lazarus, 1981) and chronic illness tasks (Moos & Tsu, 1977) and expectations of efficacy (Bandura, 1977) in dealing with chronic illness tasks and of locus of control (Strickland, 1978); (b) the utilization of palliative and/or adaptive methods of coping (Felton & Revenson, 1984); and (c) social support in terms of family functioning (Daniels, Moos, Billings, & Miller, 1987). There are yet insufficient theoretical or empirical bases for postulating path relationships among and between the illness and demographic parameters and psychosocial/mediational processes. Rather, the focus is on assessing individual,
.SES
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. Severity
Parameters
Illness Parameters
JL
.Conflicted
. Adaptive .Controlling
.Supportive
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_L
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Methods of
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Fig. 1. Stress and Coping Model applied to maternal adjustment to child's CF.
Contro1
Health Locus of
Efficacy
. Expectations
II lness Tasks
Daily Hassles
.Appraisal-Stress
Processes
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incremental, and collective contributions of these parameters and hypothesized mediational processes to maternal adjustment. We hypothesized that (1) some mothers of children with CF will report clinically significant levels of psychological distress and that (2) mothers with poor adjustment will not differ significantly from mothers with good adjustment in terms of illness and demographic parameters but will have higher levels of perceived stress, both daily and illness related, lower levels of efficacy expectations and internal health locus of control expectations, higher levels of palliative coping, and family functioning characterized by lower levels of support and higher levels of conflict than mothers with good adjustment. It is also hypothesized that (3) mediational processes will account for independent and significant increments in the variance in maternal adjustment over and above that accounted for by illness and demographic parameters. METHOD Subjects
The subjects were participants in a stress and coping project of the Cystic Fibrosis Center. The 125 children and adolescents (7-17 years of age) on the active clinic roster and their parents were invited to participate. Of these, 20 declined and another 25 did not respond after two follow-up invitations. Of the 80 who enrolled in the study, 1 subsequently withdrew and 1 was dropped in accordance with the exclusionary criteria because of multiple congenital anomalies, resulting in a sample of 78. Of these, 68 mothers and 5 fathers and their children completed the protocol, but 5 protocols were incomplete and were excluded from analysis. Since there were too few fathers for data analysis, the 68 mothers constituted the study sample for this report. At the time of the evaluation, 54 were married and 14 were not. The number of children in the family ranged from one to nine, with 91% of the sample having three or fewer children. Of the 68 children with CF, 40 were male and 28 female, with a mean age of 135.09 months, and 7 (10.3%) had a sibling with CF. There were no significant differences between the 55 nonparticipants (20 refused + 25 no response + 5 incomplete + 5 father completed) and the study sample (n = 68) in patient gender, x 2 (l. N = 123) = 1.16, p = ns; patient age, F(l, 118) = 0.02, p = ns; or three measures of pulmonary functioning, Wilks' lambda = 0.96; F(3, 116) = 1.52, p = ns. Procedure The Institutional Review Board approved protocol included structured interviews conducted by psychologists (K.G. and K.H.) with patients and parents and
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self-report inventories that were completed during a regular clinic visit to the Cystic Fibrosis Center. The clinical interviews were conducted independently of, and blind to, the results of the self-report inventories. Consent was obtained from both the patient and parent. Illness Parameters
Generic Parameter SES was assessed using the two-factor index of social position (Hollingshead, 1957). There was a relatively balanced distribution of the sample across the five SES levels: I (high), n = 8 (11.8%); II, n = 13 (19.1%); HI, n = 21 (30.9%), IV, n = 17 (25.0%); and V, n = 9 (13.2%). Cognitive Processes Daily Stress was assessed by having mothers complete the 117-item Hassles Scale (Kanner et al., 1981) that yields a measure (sum) reflecting both frequency and severity ratings. A structured interview was utilized to assess maternal appraisal of stress and expectations of efficacy in relation to four illness-related
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Severity of cystic fibrosis was assessed through the Shwachman Clinical Evaluation System (Shwachman & Kulczycki, 1958). This rating system assesses child functioning in four areas: activity, pulmonary physical findings and cough, growth and nutrition, and chest X-ray film findings. Total scores range from 20 to 100 with higher scores indicating better functioning and lesser severity. The Shwachman was completed by the medical staff based on findings from the clinic visit. Consistent with age (M = 11.25 years), the study sample was relatively healthy with 33 (49.3%) and 28 (41.8%) patients within the very good (86-100) and good (71-85) categories, respectively, 6 (8.3%) patients in the mild impairment (56-70) category, and none in the poor (^55) category. Pulmonary function testing was routinely obtained at each clinic visit in accordance with the American Thoracic Society (1987) statement on the standardization of spirometry, and thus was available on both study participants and nonparticipants. Relatively few patients demonstrated moderately (40—59) or severely ( s 39) impaired functioning in terms of Forced Vital Capacity (FVC) or Forced Expiratory Volume at 1 second (FEV). However, in terms of Forced Expiratory How (FEF 25 _ 75 ), 15 (22.1%) of the patients demonstrated moderately impaired and 25 (36.8%) demonstrated severely impaired functioning. The FEF reflects small airway functioning which is frequently the earliest indicator of pulmonary impairment.
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tasks identified by Moos and Tsu (1977): (a) dealing with the child's medical problems and symptoms; (b) maintaining the child's emotional well-being; (c) maintaining their own emotional well-being; and (d) preparing for an uncertain future. Illness Stress was assessed by asking mothers to identify stress they experienced in relation to each of the four illness tasks and to rate how stressful each had been on a scale ranging from (not stressful at all) (1) to very stressful (100). In addition to the four stress ratings, a sum score was derived (Cronbach alpha = .76). Efficacy was assessed by asking mothers to rate how certain they were that they could handle each task on a scale ranging from great uncertainty (1%) to complete certainty (100%). In addition to the four efficacy ratings, a sum score was derived (Cronbach alpha = .76). Mothers' expectations of control over health were assessed through the Multidimensional Health Locus of Control Scales (Wallston, Wallston, & DeVellis, 1978) which yielded scores for three dimensions: Internal, Powerful Other, and Chance.
Methods of Coping The conceptualization of coping developed by Lazarus and Folkman (1984) was adopted. In this view, stress is not inherent in an event or situation, but arises from the person-environment transaction. Coping is the multidimensional process that refers to the ways in which people deal with stress and has two main functions. One function is to alter the troubled transaction through efforts directed at the environment or the self. Another function of coping is palliation, that is, to regulate emotional states that are associated with or result from stress. Coping was assessed using the 65-item Ways of Coping questionnaire, developed by Folkman and Lazarus (1980) and augmented by Felton, Revenson, and Henrichsen (1984) and by Vitaliano, Russo, Carr, Maiuro, and Becker (1985). Mothers were instructed to indicate on a 5-point scale how often (never, seldom, sometimes, often, most of the time) she utilized each coping behavior in relation to the overall situation of their child's illness. Factor analytic studies have delineated both broad-band methods of coping, such as emotion-focused and problem focused (Folkman & Lazarus, 1980), and specific subtypes (Felton et al., 1984; Vitaliano et al., 1985). With overlapping items removed, scores obtained on each of these subscales were summed to yield two broad-band measures of coping to reflect the two primary functions of coping postulated by Lazarus and Folkman (1984). Palliative coping was the sum of the item scores constituting the emotion focused, avoidance, wishful thinking, and self-blame factors (Cronbach alpha = .85). Adaptive coping is the sum of the item scores constituting the problem focused, cognitive restructuring, seeking information, and seeking social support factors (Cronbach alpha = .91).
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Social Support: Family Functioning
Psychosocial Adjustment Symptom Checklist 90-Revised (SCI^90-R; Derogatis, 1983) is a 90-item self-report measure of psychological distress along nine symptom dimensions: depression, anxiety, somatization, obsessive-compulsive, interpersonal sensitivity, hostility, phobic anxiety, paranoid ideation, and psychoticism. The Global Severity Index (GSI) combines information on number of symptoms and intensity of distress. Raw scores on the nine symptom dimensions and the GSI were converted to T scores using nonpatient norms for females. T scores > 63 (i.e., above the 90th percentile) are considered to be in the clinical range.
RESULTS Maternal Psychological Adjustment To address Hypothesis 1 regarding maternal psychological adjustment, overall poor versus good adjustment was determined in accordance with the established criteria for "caseness." That is, poor adjustment was defined as GSI or any two of the nine symptom dimensions with T score 5: 63. While 45 mothers (66.2%) demonstrated good adjustment, 23 (33.8%) mothers met the criteria for poor adjustment. Elevations into the clinical range of distress (T 2: 63) occurred for 14 (20.6%) mothers on depression and 12 (17.6%) mothers on anxiety. Good Versus Poor Maternal Adjustment To address Hypothesis 2, good and poor adjustment subgroups were formed based on the criteria for caseness. Then differences between subgroups were
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The Family Environment Scale (FES; Moos & Moos, 1981) consists of 90 true-false items that form 10 subscales. Three higher order FES factors were delineated and replicated with families with chronically ill children, (Kronenberger & Thompson, 1990). The Supportive factor reflected the degree of mutual commitment and support for expression of feelings and for active participation in social and recreational activities (Cronbach alpha = .81). The Conflicted factor reflected high conflict, poor organization, and a lack of mutual commitment and support (Cronbach alpha = .84). The Controlling factor reflected emphasis upon control, ethical and religious values, achievement orientation, and a lack of independence (Cronbach alpha = .65).
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assessed on each of the demographic and illness parameters and psychosocial/mediational processes of the stress and coping model (see Figure 1). To control for Type I error, MANOVA was utilized when there were multiple measures of a domain, such as coping methods and family functioning. Significant MANOVA results were then followed by ANOVA. As hypothesized, maternal adjustment subgroups did not differ significantly in the severity of child illness, F ( l , 65) = 1.43, p = ns, or in the demographic parameters of gender, x 2 (1, N = 68) = 0.06, p = ns, child age, F ( l , 66) = 0.16, p = ns; or SES, F ( l , 66) = 2.23, p = ns. However, the poor adjustment subgroup had higher levels of stress appraisal regarding daily hassles, F(l, 65) = 18.70, p < .0001; and illness tasks, F(2, 65) = 5.15;p < .05; and lower efficacy expectations regarding illness tasks, F(2, 65) = 6.45, p < .01, than the good adjustment subgroup. There were no significant subgroup differences across the Internal, Powerful Other, and Chance health locus of control expectations (Wilks' lambda = 0.94) F(3, 64) = 1.36, p = ns. Significant subgroup differences also occurred in terms of palliative and adaptive coping methods (Wilks' lambda = 0.74) F(2, 65) = 11.24, p < .0001, and the Supportive, Conflicted, and Controlling dimensions of family functioning (Wilks' lambda = 0.73) F(3, 64) = 7.92, p < .0001. The poor adjustment subgroup demonstrated higher levels of use of palliative coping, F(l, 66) = 22.71, p < .0001; lower levels of family supportiveness, F ( l , 66) = 7.62, p < .008; and higher family conflict, F ( l , 66) = 15.92, p < .0002, than the good adjustment subgroup.
Mediation of Maternal Adjustment Hierarchical multiple regression analysis was undertaken to address Hypothesis 3 regarding the unique and combined contributions of variables of the stress and coping model to maternal psychological distress in terms of the specific symptoms dimensions of depression and anxiety. Order of entry was determined a priori, in accordance with the stress and coping model, to reflect the increment in adjustment accounted for by the hypothesized psychosocial/ mediational processes over and above that accounted for by demographic and illness parameters. Thus, the illness parameter of clinical severity (Shwachman score) was forced in first followed by the demographic parameters of child gender, age, and SES. Then the hypothesized mediational processes were allowed to enter in a stepwise procedure if they met the criterion of adding a significant (p < .05) increment in variance. These mediational variables included mother's appraisal of daily stress, stress and efficacy ratings regarding the four CF illness tasks as well as the stress sum and efficacy sum scores, the three health locus of control expectancy scores, palliative and adaptive coping, and the
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Table I. Multiple Regression of Maternal Depression and Anxiety Symptoms Scores Dependent and independent variables Maternal depression Shwachman SES Child age Gender Daily stress Family supportiveness Palliative coping Maternal anxiety Shwachman SES Gender Child age Daily stress Efficacy regarding child's EWBC Family controlling "Standardized regression coefficient. b F test on change in R2. ^Emotional well-being. d p < .05. 'p < .01. /p < .001.
b°
Change inR 2
Fb
Cumulative R2
-.04 -.03 .04 -.00 .47 -.26 .23
.03 .09 00 .01 .30 .07 .03
0.17 0.08 0.14 0.00 16.21/ 6.07rf 4.16rf
.03 .12 .12 .13 .43 .50 .53
-.21 .07 -.14 -.15 .42 -.28 .24
.04 .07 .03 01 .22 .08 .05
4.31'' 0.37 2.22 2.29 15.05/ 8.06'
.04 .11 .14 .15 .37 .45 .50
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three family functioning factor scores. Thus, the regression analysis was hierarchical between sets and stepwise within sets (Cohen & Cohen, 1983). The final steps in the multiple regression analysis are depicted in Table I for both depression and anxiety. In terms of maternal depression, neither the illness parameter of severity nor the demographic parameters accounted for significant portions of variance and together accounted for only 13% of the variance. Each of the mediational processes of daily stress, family supportiveness, and maternal use of palliative coping added significant increments in variance. Together, these variables accounted for 53% of the variance in maternal depression. In terms of maternal anxiety, illness severity accounted for a significant amount of variance. The demographic parameters did not account for significant increments in variance and together the illness and demographic parameters accounted for 15% of the variance. Each of the mediational processes of daily stress, maternal efficacy expectations regarding maintaining their child's emotional well-being, and the extent to which family functioning is characterized by control added significant increments in variance. Together, these variables accounted for 50% of the variance in maternal anxiety.
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Additional Analyses
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The question arises regarding the extent to which potentially important variables that have not been included in the model, such as dimensions of family structure, could alter the obtained results. However, follow-up analyses indicated that there was no significant difference between the subgroup of mothers who were married (n = 54) versus those not married (n = 14) in anxiety, F(l, 66) = 0.01, p = ns; or depression, F(l, 66) = 0.95; p = ns. Also, the number of children in the family was not significantly correlated with maternal depression (r = .03) or maternal anxiety (r = .06). Furthermore, the regression analysis was redone to include marital status and number of children, but neither added a significant increment to the variance in maternal adjustment. Another question concerns the extent to which the findings reflect method variance with regard to the interrelationship of the maternal self-report measures of mediational processes and adjustment. While the hierarchical multiple regression analyses clarified the relative and independent contributions among the mediational processes to psychosocial outcome, univariate correlations indicated low to moderate levels of shared variance among the mediational processes. For example, palliative coping correlated moderately with daily stress (r = .52, p < .0001) but less strongly with the sum of stress ratings regarding illness tasks (r = .28, p < .02) and negatively with family supportiveness (r = —.24, p < .05). Even between the measures of daily stress and the sum of stress ratings regarding illness tasks, there was only 25% shared variance (r = .50, p < .0001).
DISCUSSION The findings of this study indicate that approximately two thirds of mothers of children and adolescents with CF met the criteria for good psychological adjustment. The 34% rate of overall poor maternal adjustment was consistent with previous findings of moderate frequencies of poor parental adjustment (Gayton, Friedman, Tavormina, & Tucker, 1977). These findings also add support to the existing evidence (Frydman, 1980; Walker et al., 1987) that parental distress is not strongly related to the child's illness severity measured objectively. Furthermore, maternal adjustment also was not strongly related to the demographic parameter of child age or gender and SES. Together, the illness and demographic parameters accounted for only 13—15% of the variance in maternal psychological distress. In contrast, support was provided for the hypothesized role of maternal psychosocial/mediational processes in maternal anxiety and depression. Poor versus good maternal adjustment was associated with higher levels of daily stress and stress regarding illness tasks, lower efficacy ratings, more use of palliative
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coping methods, lower levels of family supportiveness, and higher levels of family conflict. The hypothesized mediational processes accounted for 35-40% of the variance in maternal distress over and above the 13-15% accounted for by the demographic and illness parameters. Among the mediational processes, considerable support was provided for the role of appraisal of stress in maternal adjustment. However, it was not the stress associated with CF illness tasks but the stress reflected in daily hassles that was most strongly related to maternal adjustment and which accounted for the largest independent increment in the variance in maternal depression (30%) and anxiety (22%). Hassles are defined as "the irritating, frustrating, distressing demands that to some degree characterize everyday transactions with the environment" (Kanner et al., 1981, p. 3). The endorsement of hassle items reflects the individual's cognitive appraisal and phenomenological perception of their daily lives as stressful. It is reasonable to expect that the routine environment and maternal appraisal of the stress of daily hassles might be influenced by caring for a child with CF. However, there was only 25% shared variance in mothers' appraisal of the stress of daily hassles and stress associated with illness tasks. Subsequent studies need to focus on delineating the components of daily hassles for mothers of children with CF. While daily stress accounted for the largest increment in variance in both maternal anxiety and depression, different mediational processes added significant subsequent increments in the variance in anxiety and depression. In terms of depression, lower levels of family supportiveness and more use of palliative coping were significant contributors. In terms of anxiety, low maternal expectations of efficacy for the specific illness task of maintaining their child's emotional well-being, and family functioning characterized by higher levels of control were significant contributors. Whether this differential pattern has implications for preventing or ameliorating different manifestations of maternal psychological distress needs to await replication with studies that utilize structured clinical interviews to more fully assess symptoms of distress. This study has several limitations. First, the conceptual model that guided this study is not yet fully formulated. The primary focus was to assess the contributions to adjustment of mediational processes over and above the contribution of illness severity and demographic parameters. The full complement of direct and indirect paths remain to be formulated and tested. Second, the question arises as to the extent to which the findings represent method variance since self-report measures and ratings were used to reflect both adjustment and mediational processes. However, the findings from the univariate and multiple regression analyses indicate that the same construct or domain is not being tapped by various measures. Now that maternal distress in relation to their child's CF has been empirically demonstrated, future studies should include structured clinical interviews to delineate the type and severity of maternal distress. Third, these
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cross-sectional findings provide an incomplete basis for formulating intervention goals and methods. The next step in this line of research is to address the stability and change over time in the interrelationship of maternal adjustment and illness and demographic parameters and psychosocial/mediational processes.
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Strickland, B. R. (1978). Internal-external expectancies and health-related behaviors. Journal of Consulting and Clinical Psychology, 46, 1192-1211. Thompson, R. J., Jr. (1985). Coping with the stress of chronic childhood illness. In A. N. O'Quinn (Ed.), Management of chronic disorders of childhood (pp. 11-41). Boston: G. K. Hall. Vitaliano, P. P., Russo, J., Carr, J. E., Maiuro, R. D., & Becker, J. (1985). The Ways of Coping Checklist: Revision and psychometric properties. Multivariate Behavioral Research, 20, 3-26. Walker, L. S., Ford, M. B., & Donald, W. D. (1987). Cystic fibrosis and family stress: Effects of age and severity of illness. Pediatrics, 79, 239-246. Wallston, K. A., Wallston, B. S., & DeVellis, R. (1978). Development of the Multidimensional Health Locus of Control (MHLC) Scales. Health Education Monograph, 6, 160-170.
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