Journal of Pediatric Psychology, Vol. 16, No. 2, 1991, pp. 137-149
David R. DeMaso1 and Leslie K. Campis The Children's Hospital, Boston
David Wypij Harvard School of Public Health
Susan Bertram Hood College
Martha Lipshitz and Michael Freed The Children's Hospital, Boston Received December 14, 1989; accepted July 9, 1990
Hypothesized that maternal perceptions would be more significant predictors of emotional adjustment than medical severity. Mothers of 99 children, between the ages 4-10 years, completed the Child Behavior Checklist, Parenting Stress Index, Parental Locus of Control Scale, and a measure of perception of medical severity. Assessed medical severity by number of hospitalizations, operations, catheterizations, hospital days, outpatient visits, and a cardiologist's rating of illness severity. Maternal perceptions were potent predictors of emotional adjustment. Approximately 33% of the variability in adjustment was accounted for by maternal perceptions, while the medical severity accounted for less than 3% of the variability. Severity of illness appears less critical to successful adaptation than the quality of the mother—child relationship. KEY WORDS: adaptation; interaction; parenting; severity; congenital heart disease 'All correspondence should be sent to David R. DeMaso, Department of Psychiatry, The Children's Hospital, 300 Longwood Avenue, Boston, Massachusetts 02115 137 0146-8693/91/0400-0137J06 50/0 « 1991 Plenum Publishing Corponuion
Downloaded from http://jpepsy.oxfordjournals.org/ at University of Sussex on September 24, 2012
The Impact of Maternal Perceptions and Medical Severity on the Adjustment of Children with Congenital Heart Disease
138
DeMaso, Campis, Wypij, Bertram, Lipshitz, and Freed
Downloaded from http://jpepsy.oxfordjournals.org/ at University of Sussex on September 24, 2012
Improvements in the medical management of congenital heart disease (CHD) have enabled children to survive who in the past would have died, and allowed others to avoid its debilitating effects (Nadas, 1984). With the improved survival rates, interest in the emotional adjustment of these children has generated much research. Studies of children with CHD have produced conflicting results regarding their adjustment ranging from findings of major psychopathology to healthy coping. Early studies of children with CHD reported a negative impact on development, such as disrupted family relationships (Apley, Barbour, & Westmacott, 1967; Lavigne & Ryan, 1979; Linde, Rasof, & Dunn, 1970), and emotional disturbance (Aurer, Senturia, Shopper, & Biddy, 1979; Green & Levitt, 1962). Conversely, recent research has suggested that many children with CHD demonstrate healthy adjustment (Baer, Freedman, & Garson, 1984; Gidding & Rosenthai, 1984; O'Dougherty, Wright, Garmezy, Loewenson, & Torres, 1983; Silbert, Newburger, & Fyler, 1982; Silverman, 1983). Findings of healthy adjustment in children with CHD have paralleled studies of adaptation to other challenging life events such as disease, handicaps, and abuse (Beardslee & Podorefsky, 1988; Garmezy, 1981; Koocher & O'Malley, 1981). The factors that may facilitate or hinder a child's coping with a chronic illness have important implications for management. The medical severity of CHD has been assumed to be a major influence on a child's emotional adjustment. Studies of CHD have usually evaluated the effects of diagnosis alone, and have not assessed experiential aspects of the illness, such as number of hospitalizations or operations. In other chronic illnesses, the severity of impairment has not proven to be a significant contributor to a child's adjustment (Lavigne, Nolan, & McLone, 1988). Within the CHD population, the impact of medical severity on adjustment has not been well studied. The interaction between mother and child has also been proposed as an influential factor in a child's emotional adjustment (Rutter, 1986). Prior research has suggested that parents' self-concept (Breslau, Staruch, & Mortimer, 1982; Tower, 1980), children's perceptions of their parents' behavior (Crase, Foss, & Cobert, 1981; Edell & Motta, 1988), and family adaptability (McCubbin et al., 1982) all affect adjustment in children. However, a mother's feelings and perceptions regarding her parenting skills and interactions with her children have not been investigated. These maternal perceptions may facilitate or hinder a child's adjustment through their influence on the mother—child interaction. Parental locus of control (Campis, Lyman, & Prentice-Dunn, 1986), parent stress (Holroyd & Guthrie, 1986), and perception of severity (Bergman & Stamm, 1967) are three maternal perceptions that have been reported to be important. Parental locus of control is a set of specific expectancies that indicate the extent to which parents view a child's behavior as a direct consequence of their
Adjustment of Children with Congenital Heart Disease
139
METHOD Subjects The study was conducted in the outpatient cardiology clinic of a tertiary care pediatric hospital. The subjects were mothers of children between the ages of 4 and 10 years. To be eligible for the study, the children's CHD must have been diagnosed for at least 1 year. Mothers of children with Down syndrome were not included in the study, as their experience was considered qualitatively different from that of other parents because of the special needs unique to that population. Data were collected on 104 mothers who presented consecutively in the clinic. Five mothers were excluded because they either did not meet the inclusion criteria or did not complete questionnaires adequately. The mothers received $5 for their participation. Informed consent was obtained from all parents.
Downloaded from http://jpepsy.oxfordjournals.org/ at University of Sussex on September 24, 2012
parenting efforts (internal) or as outside their control (external). An external orientation has been demonstrated to exist in parents who are experiencing difficulty within their parenting role or whose children exhibit adjustment difficulties. Conversely, mothers with an internal locus of control experienced fewer problems within the mother-child relationship (Campis et al., 1986). Parental locus of control has not been examined in mothers of children with CHD. Excessive parental stress has been reported in families with chronically ill children (Boll, Dimino, & Mattson, 1978; Holroyd & Guthrie, 1986; Tavormina, Boll, Dunn, Luscomb, & Taylor, 1981). Several studies have reported no differences in stress experienced by parents of children with different diseases (Kazak, 1987; McKinney & Peterson, 1987). The manifestation of parenting stress within the mother-child relationship, specific to the CHD population, has not been examined. A mother's perception of medical severity is the third variable that may impact on the mother-child relationship (Bergman & Stamm, 1967). This variable has been suggested as a less important predictor of emotional adjustment in children with CHD than "maternal anxiety and pampering" (Linde, Rasof, & Dunn, 1966). Such findings must be replicated to determine if maternal perception of severity is an important contributor to child adjustment. This investigation attempts to determine whether severity of the heart disorder and maternal perceptions are related to the emotional adjustment of children with CHD. We hypothesized that maternal perceptions (measured by parental locus of control, parental stress, and perception of medical severity scales) would be significant predictors of psychological adjustment over and beyond measures of medical severity.
140
DeMaso, Campis, Wypij, Bertram, Lipshitz, and Freed
Dependent Variable Measures Child Adjustment Measure
Predictor Variable Measures Maternal Perceptions The Parental Locus of Control Scale (PLOC) measures parental expectancies to determine if parents view their child's behavior as a direct consequence of their parenting efforts (internal locus of control) or as outside the purview of their parenting efforts (external locus of control). Per the authors' recommendations (Campis et al., 1986), a 36-item revision of the PLOC was used. Low scores on the PLOC suggest an internal orientation, whereas high scores indicate the opposite. Campis et al. (1986) reported good total scale reliability (Cronbach coefficient of .92) as well as construct validity. A test of discriminant validity revealed the sound psychometric properties of this scale as the PLOC discriminated between two parent groups. The Parenting Stress Index (PSI) identifies mother-child systems under excessive stress and at risk for Che development of dysfunctional parenting behaviors or child behavioral problems (Abidin, 1986). This 126-item measure is divided into two subscales: Child and Parent domains. The Child domain scale assesses aspects of child temperament and the extent to which these child characteristics are stressful to the parent. High scores are associated with child qualities that interfere with parenting. The Parent domain scale evaluates a parent's personal characteristics and social support system as they correspond to the demands and tasks of parenting. High scores indicate that the parent characteristics are a potential source for dysfunction in the mother-child relationship. Though each mother completed the entire measure, the Child domain subscales of Adaptability, Demandingness, Mood, and Distractability were deleted because of substantial overlap with CBCL items. The remaining subscales of Child Acceptability and Child Reinforces Mother were used as a more accurate measure of
Downloaded from http://jpepsy.oxfordjournals.org/ at University of Sussex on September 24, 2012
The Child Behavior Checklist (CBCL) was completed by each mother (Achenbach & Edelbrock, 1983). The behavior problems measure of the CBCL was used in this analysis. This measure consists of 118 items which assess internalizing and externalizing behavior problems; an overall T score of psychological adjustment is calculated from these subscales. Achenbach and Edelbrock (1983) reported high test-retest reliability and good discriminant validity, supported by the finding that clinical and nonclinical samples differed significantly on the CBCL.
Adjustment of Children with Congenital Heart Disease
141
mother-child interaction. The Parent domain scale was left unchanged. Additionally, there is a subscale measuring sources of current life stress such as divorce, separation, death, and so forth. Thus, there is a PSI score for the Child domain, the Parent domain, and a stress score. The Mother's Perception of Medical Severity (MSEV) scale was constructed by the authors. Scores were obtained by asking each mother to rate "how severe your child's heart condition is" on a 5-point Likert scale ranging from insignificant (1) to severe (5).
Medical data were collected on all children from medical chart review by the cardiology clinic's nurse clinician. Any missing infonnation was obtained by contacting the parents by telephone. Information was obtained for (a) total hospitalizations, (b) total hospital days, (c) number of cardiac operations, (d) number of cardiac catheterizations, and (e) number of outpatient visits since the diagnosis of CHD. Associated medical problems were defined as a medical conditions requiring ongoing monitoring or medication. They were coded by the nurse clinician as none, minor (e.g., otitis media), or major (e.g., seizures). The length of time since initial diagnosis was also recorded. Although the specific heart lesions were recorded, cardiac diagnosis does not always accurately reflect the degree of medical severity. In order to assess this more accurately, the Cardiologist's Perception of Medical Severity (CSEV) was rated for all children on the following scale: (1) no or insignificant disorder—disorder has no impact on child's health; (2) mild disorder—lesion requires no operative intervention, only long-term follow-up (e.g., small ventricular septal defect); (3) moderate disorder—child is asymptomatic, but has had or will require operation, easy repair (e.g., atrial septal defect); (4) marked disorder— child quite symptomatic; has had or will require major difficult repair (e.g., tetralogy of Fallot, transposition of great arteries); (5) severe disorder—uncorrectable cardiac lesions or only complex palliative repair possible (e.g., pulmonary vascular obstruction, fontan repair, valve replacement). Two pediatric cardiologists independently rated the children using this scale. When high correlation was demonstrated for the first 49 children (r = .97), the remainder were evaluated by only one cardiologist. RESULTS Sample Characteristics There were 55 boys and 44 girls in the study. The mean age of the children was 5.90 (SD = 1.91) years. All but two of the families were white. The mothers
Downloaded from http://jpepsy.oxfordjournals.org/ at University of Sussex on September 24, 2012
Medical Severity Measures
142
DeMaso, Campis, Wypij, Bertram, Lipshitz, and Freed
were married in 84% of the families. Socioeconomic level was calculated using Hollingshead's Occupational Scale (1975) for the higher status parent. The distribution of scores, from high to low, was 9 (13.1%), 8 (14.1%), 7 (15.2%), 6 (9.1%), 5 (10.1%), 4 (25.3%), 3 (10.1%), 2 (2%), and 1 (1%). Medical Severity Description
Maternal Perceptions Score Distribution The mean score for the children on the CBCL was 52.18 (SD = 11.24). The mean score on the PLOC was 90.78 (SD = 10.78). The mean scores on the PSI were as follows: Child domain (all items), 99.83 (SD = 21.33); Parent domain, 114.07 (SD = 20.55); stress score 8.48 (SD = 8.61), and the Total score, 213.90 (SD = 36.53). These mean scores on the CBCL, PLOC, and the PSI were not significantly different from each scale's comparative mean for "healthy or normal" children. The mean MSEV rating was 3.08 (SD = 1.17, range 1-5). Influences on Maternal Perceptions Demographic Variables. Pearson correlation coefficients were calculated to measure associations between demographic variables and the following measures: Parental Locus of Control (PLOC); Parenting Stress Index (PSI); and maternal rating of medical severity (MSEV). The results, described in Table I, revealed a significant negative correlation between a child's age and the Parent domain scores on the PSI. This suggested that parent stress was lower in mothers with older children. There also was a significant positive correlation between marital status and the stress score on the PSI. Mothers without a marital partner scored higher on this stress subscale. No other significant correlations between demographic variables and maternal perception measures were present. Medical Severity Measures. Table II summarizes the correlations between the medical severity and maternal perceptions. Spearman rank correlation coeffi-
Downloaded from http://jpepsy.oxfordjournals.org/ at University of Sussex on September 24, 2012
The mean number of hospitalizations was 2.98 (SD = 2.54, range 0-12). There was a mean total of 25.11 (SD = 28.42, range 0-153) hospital days. The mean number of operations was 1.41 (SD = 1.34, range 0-5). The mean number of catheterizations was 1.72 (SD = 1.51, range 0-6). The mean number of outpatient visits was 11.07 (SD = 10.72, range 1-96). The mean number of associated medical problems was 0.42 (SD = 0.69, range 0—2). The mean length of time since diagnosis was 5.27 years (SD = 2.10, range 1-10). The average CSEV rating was 3.51 (SD = 1.11, range 1-5).
Adjustment of Children with Congenital Heart Disease
143
Table I. Pearson Correlation Coefficients for Demographic and Maternal Perception Variables" Demographic variables
PSI Parent domain
PSI Stress score
PLOC
.04 .18
-.03 .08
-.22* .09
-.01 .13
-.15 -.03
.05
.00
-.14
.00
.08
-.08
.06
.18
-.07
-.05
-.05
MSEV
.3
David R. DeMaso1 and Leslie K. Campis The Children's Hospital, Boston
David Wypij Harvard School of Public Health
Susan Bertram Hood College
Martha Lipshitz and Michael Freed The Children's Hospital, Boston Received December 14, 1989; accepted July 9, 1990
Hypothesized that maternal perceptions would be more significant predictors of emotional adjustment than medical severity. Mothers of 99 children, between the ages 4-10 years, completed the Child Behavior Checklist, Parenting Stress Index, Parental Locus of Control Scale, and a measure of perception of medical severity. Assessed medical severity by number of hospitalizations, operations, catheterizations, hospital days, outpatient visits, and a cardiologist's rating of illness severity. Maternal perceptions were potent predictors of emotional adjustment. Approximately 33% of the variability in adjustment was accounted for by maternal perceptions, while the medical severity accounted for less than 3% of the variability. Severity of illness appears less critical to successful adaptation than the quality of the mother—child relationship. KEY WORDS: adaptation; interaction; parenting; severity; congenital heart disease 'All correspondence should be sent to David R. DeMaso, Department of Psychiatry, The Children's Hospital, 300 Longwood Avenue, Boston, Massachusetts 02115 137 0146-8693/91/0400-0137J06 50/0 « 1991 Plenum Publishing Corponuion
Downloaded from http://jpepsy.oxfordjournals.org/ at University of Sussex on September 24, 2012
The Impact of Maternal Perceptions and Medical Severity on the Adjustment of Children with Congenital Heart Disease
138
DeMaso, Campis, Wypij, Bertram, Lipshitz, and Freed
Downloaded from http://jpepsy.oxfordjournals.org/ at University of Sussex on September 24, 2012
Improvements in the medical management of congenital heart disease (CHD) have enabled children to survive who in the past would have died, and allowed others to avoid its debilitating effects (Nadas, 1984). With the improved survival rates, interest in the emotional adjustment of these children has generated much research. Studies of children with CHD have produced conflicting results regarding their adjustment ranging from findings of major psychopathology to healthy coping. Early studies of children with CHD reported a negative impact on development, such as disrupted family relationships (Apley, Barbour, & Westmacott, 1967; Lavigne & Ryan, 1979; Linde, Rasof, & Dunn, 1970), and emotional disturbance (Aurer, Senturia, Shopper, & Biddy, 1979; Green & Levitt, 1962). Conversely, recent research has suggested that many children with CHD demonstrate healthy adjustment (Baer, Freedman, & Garson, 1984; Gidding & Rosenthai, 1984; O'Dougherty, Wright, Garmezy, Loewenson, & Torres, 1983; Silbert, Newburger, & Fyler, 1982; Silverman, 1983). Findings of healthy adjustment in children with CHD have paralleled studies of adaptation to other challenging life events such as disease, handicaps, and abuse (Beardslee & Podorefsky, 1988; Garmezy, 1981; Koocher & O'Malley, 1981). The factors that may facilitate or hinder a child's coping with a chronic illness have important implications for management. The medical severity of CHD has been assumed to be a major influence on a child's emotional adjustment. Studies of CHD have usually evaluated the effects of diagnosis alone, and have not assessed experiential aspects of the illness, such as number of hospitalizations or operations. In other chronic illnesses, the severity of impairment has not proven to be a significant contributor to a child's adjustment (Lavigne, Nolan, & McLone, 1988). Within the CHD population, the impact of medical severity on adjustment has not been well studied. The interaction between mother and child has also been proposed as an influential factor in a child's emotional adjustment (Rutter, 1986). Prior research has suggested that parents' self-concept (Breslau, Staruch, & Mortimer, 1982; Tower, 1980), children's perceptions of their parents' behavior (Crase, Foss, & Cobert, 1981; Edell & Motta, 1988), and family adaptability (McCubbin et al., 1982) all affect adjustment in children. However, a mother's feelings and perceptions regarding her parenting skills and interactions with her children have not been investigated. These maternal perceptions may facilitate or hinder a child's adjustment through their influence on the mother—child interaction. Parental locus of control (Campis, Lyman, & Prentice-Dunn, 1986), parent stress (Holroyd & Guthrie, 1986), and perception of severity (Bergman & Stamm, 1967) are three maternal perceptions that have been reported to be important. Parental locus of control is a set of specific expectancies that indicate the extent to which parents view a child's behavior as a direct consequence of their
Adjustment of Children with Congenital Heart Disease
139
METHOD Subjects The study was conducted in the outpatient cardiology clinic of a tertiary care pediatric hospital. The subjects were mothers of children between the ages of 4 and 10 years. To be eligible for the study, the children's CHD must have been diagnosed for at least 1 year. Mothers of children with Down syndrome were not included in the study, as their experience was considered qualitatively different from that of other parents because of the special needs unique to that population. Data were collected on 104 mothers who presented consecutively in the clinic. Five mothers were excluded because they either did not meet the inclusion criteria or did not complete questionnaires adequately. The mothers received $5 for their participation. Informed consent was obtained from all parents.
Downloaded from http://jpepsy.oxfordjournals.org/ at University of Sussex on September 24, 2012
parenting efforts (internal) or as outside their control (external). An external orientation has been demonstrated to exist in parents who are experiencing difficulty within their parenting role or whose children exhibit adjustment difficulties. Conversely, mothers with an internal locus of control experienced fewer problems within the mother-child relationship (Campis et al., 1986). Parental locus of control has not been examined in mothers of children with CHD. Excessive parental stress has been reported in families with chronically ill children (Boll, Dimino, & Mattson, 1978; Holroyd & Guthrie, 1986; Tavormina, Boll, Dunn, Luscomb, & Taylor, 1981). Several studies have reported no differences in stress experienced by parents of children with different diseases (Kazak, 1987; McKinney & Peterson, 1987). The manifestation of parenting stress within the mother-child relationship, specific to the CHD population, has not been examined. A mother's perception of medical severity is the third variable that may impact on the mother-child relationship (Bergman & Stamm, 1967). This variable has been suggested as a less important predictor of emotional adjustment in children with CHD than "maternal anxiety and pampering" (Linde, Rasof, & Dunn, 1966). Such findings must be replicated to determine if maternal perception of severity is an important contributor to child adjustment. This investigation attempts to determine whether severity of the heart disorder and maternal perceptions are related to the emotional adjustment of children with CHD. We hypothesized that maternal perceptions (measured by parental locus of control, parental stress, and perception of medical severity scales) would be significant predictors of psychological adjustment over and beyond measures of medical severity.
140
DeMaso, Campis, Wypij, Bertram, Lipshitz, and Freed
Dependent Variable Measures Child Adjustment Measure
Predictor Variable Measures Maternal Perceptions The Parental Locus of Control Scale (PLOC) measures parental expectancies to determine if parents view their child's behavior as a direct consequence of their parenting efforts (internal locus of control) or as outside the purview of their parenting efforts (external locus of control). Per the authors' recommendations (Campis et al., 1986), a 36-item revision of the PLOC was used. Low scores on the PLOC suggest an internal orientation, whereas high scores indicate the opposite. Campis et al. (1986) reported good total scale reliability (Cronbach coefficient of .92) as well as construct validity. A test of discriminant validity revealed the sound psychometric properties of this scale as the PLOC discriminated between two parent groups. The Parenting Stress Index (PSI) identifies mother-child systems under excessive stress and at risk for Che development of dysfunctional parenting behaviors or child behavioral problems (Abidin, 1986). This 126-item measure is divided into two subscales: Child and Parent domains. The Child domain scale assesses aspects of child temperament and the extent to which these child characteristics are stressful to the parent. High scores are associated with child qualities that interfere with parenting. The Parent domain scale evaluates a parent's personal characteristics and social support system as they correspond to the demands and tasks of parenting. High scores indicate that the parent characteristics are a potential source for dysfunction in the mother-child relationship. Though each mother completed the entire measure, the Child domain subscales of Adaptability, Demandingness, Mood, and Distractability were deleted because of substantial overlap with CBCL items. The remaining subscales of Child Acceptability and Child Reinforces Mother were used as a more accurate measure of
Downloaded from http://jpepsy.oxfordjournals.org/ at University of Sussex on September 24, 2012
The Child Behavior Checklist (CBCL) was completed by each mother (Achenbach & Edelbrock, 1983). The behavior problems measure of the CBCL was used in this analysis. This measure consists of 118 items which assess internalizing and externalizing behavior problems; an overall T score of psychological adjustment is calculated from these subscales. Achenbach and Edelbrock (1983) reported high test-retest reliability and good discriminant validity, supported by the finding that clinical and nonclinical samples differed significantly on the CBCL.
Adjustment of Children with Congenital Heart Disease
141
mother-child interaction. The Parent domain scale was left unchanged. Additionally, there is a subscale measuring sources of current life stress such as divorce, separation, death, and so forth. Thus, there is a PSI score for the Child domain, the Parent domain, and a stress score. The Mother's Perception of Medical Severity (MSEV) scale was constructed by the authors. Scores were obtained by asking each mother to rate "how severe your child's heart condition is" on a 5-point Likert scale ranging from insignificant (1) to severe (5).
Medical data were collected on all children from medical chart review by the cardiology clinic's nurse clinician. Any missing infonnation was obtained by contacting the parents by telephone. Information was obtained for (a) total hospitalizations, (b) total hospital days, (c) number of cardiac operations, (d) number of cardiac catheterizations, and (e) number of outpatient visits since the diagnosis of CHD. Associated medical problems were defined as a medical conditions requiring ongoing monitoring or medication. They were coded by the nurse clinician as none, minor (e.g., otitis media), or major (e.g., seizures). The length of time since initial diagnosis was also recorded. Although the specific heart lesions were recorded, cardiac diagnosis does not always accurately reflect the degree of medical severity. In order to assess this more accurately, the Cardiologist's Perception of Medical Severity (CSEV) was rated for all children on the following scale: (1) no or insignificant disorder—disorder has no impact on child's health; (2) mild disorder—lesion requires no operative intervention, only long-term follow-up (e.g., small ventricular septal defect); (3) moderate disorder—child is asymptomatic, but has had or will require operation, easy repair (e.g., atrial septal defect); (4) marked disorder— child quite symptomatic; has had or will require major difficult repair (e.g., tetralogy of Fallot, transposition of great arteries); (5) severe disorder—uncorrectable cardiac lesions or only complex palliative repair possible (e.g., pulmonary vascular obstruction, fontan repair, valve replacement). Two pediatric cardiologists independently rated the children using this scale. When high correlation was demonstrated for the first 49 children (r = .97), the remainder were evaluated by only one cardiologist. RESULTS Sample Characteristics There were 55 boys and 44 girls in the study. The mean age of the children was 5.90 (SD = 1.91) years. All but two of the families were white. The mothers
Downloaded from http://jpepsy.oxfordjournals.org/ at University of Sussex on September 24, 2012
Medical Severity Measures
142
DeMaso, Campis, Wypij, Bertram, Lipshitz, and Freed
were married in 84% of the families. Socioeconomic level was calculated using Hollingshead's Occupational Scale (1975) for the higher status parent. The distribution of scores, from high to low, was 9 (13.1%), 8 (14.1%), 7 (15.2%), 6 (9.1%), 5 (10.1%), 4 (25.3%), 3 (10.1%), 2 (2%), and 1 (1%). Medical Severity Description
Maternal Perceptions Score Distribution The mean score for the children on the CBCL was 52.18 (SD = 11.24). The mean score on the PLOC was 90.78 (SD = 10.78). The mean scores on the PSI were as follows: Child domain (all items), 99.83 (SD = 21.33); Parent domain, 114.07 (SD = 20.55); stress score 8.48 (SD = 8.61), and the Total score, 213.90 (SD = 36.53). These mean scores on the CBCL, PLOC, and the PSI were not significantly different from each scale's comparative mean for "healthy or normal" children. The mean MSEV rating was 3.08 (SD = 1.17, range 1-5). Influences on Maternal Perceptions Demographic Variables. Pearson correlation coefficients were calculated to measure associations between demographic variables and the following measures: Parental Locus of Control (PLOC); Parenting Stress Index (PSI); and maternal rating of medical severity (MSEV). The results, described in Table I, revealed a significant negative correlation between a child's age and the Parent domain scores on the PSI. This suggested that parent stress was lower in mothers with older children. There also was a significant positive correlation between marital status and the stress score on the PSI. Mothers without a marital partner scored higher on this stress subscale. No other significant correlations between demographic variables and maternal perception measures were present. Medical Severity Measures. Table II summarizes the correlations between the medical severity and maternal perceptions. Spearman rank correlation coeffi-
Downloaded from http://jpepsy.oxfordjournals.org/ at University of Sussex on September 24, 2012
The mean number of hospitalizations was 2.98 (SD = 2.54, range 0-12). There was a mean total of 25.11 (SD = 28.42, range 0-153) hospital days. The mean number of operations was 1.41 (SD = 1.34, range 0-5). The mean number of catheterizations was 1.72 (SD = 1.51, range 0-6). The mean number of outpatient visits was 11.07 (SD = 10.72, range 1-96). The mean number of associated medical problems was 0.42 (SD = 0.69, range 0—2). The mean length of time since diagnosis was 5.27 years (SD = 2.10, range 1-10). The average CSEV rating was 3.51 (SD = 1.11, range 1-5).
Adjustment of Children with Congenital Heart Disease
143
Table I. Pearson Correlation Coefficients for Demographic and Maternal Perception Variables" Demographic variables
PSI Parent domain
PSI Stress score
PLOC
.04 .18
-.03 .08
-.22* .09
-.01 .13
-.15 -.03
.05
.00
-.14
.00
.08
-.08
.06
.18
-.07
-.05
-.05
MSEV
.3
