Journal of Pediatric Psychology, Vol. 28, No. 4, 2003, pp. 265-274
© 2003 Society of Pediatric Psychology
Discrepancies Between Mother and Adolescent Perceptions of Diabetes-Related Decision-Making Autonomy and Their Relationship to Diabetes-Related Conflict and Adherence to Treatment
1 Case Western Reserve University, 2 Rainbow Babies and Children's Hospital
All correspondence should be sent to Victoria Miller, Department of Psychology, Case Western Reserve University, 11220 Bellflower Rd., Cleveland, Ohio 44106. E-mail: vam4{at}po.cwru.edu.
| Abstract |
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Objective To document the relationship between discrepancies in mother and adolescent perceptions of diabetes-related decision-making autonomy, diabetes-related conflict, and regimen adherence. Methods The sample was composed of 82 motheradolescent dyads. Measures included adolescent and mother reports of diabetes-related decision-making autonomy, diabetes-related conflict, and regimen adherence. Nurses' reports of adherence and number of glucose tests performed each day were also obtained. Results Discrepancies between mother and adolescent perceptions of decision-making autonomy were related to greater maternal report of diabetes-related conflict. In particular, when adolescents reported that they were more in charge of decisions than reported by their mothers, mothers reported more conflict. Discrepancies between mother and adolescent perceptions of decision-making autonomy were not related to regimen adherence. Conclusions The findings suggest that discrepancies between mother and adolescent perceptions of diabetes-related decision-making autonomy may be a potentially important area for intervention.
Key words: diabetes; adolescents; discrepancies; adherence.
| Introduction |
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Insulin-dependent diabetes mellitus, also known as type 1 diabetes, is usually diagnosed in childhood and requires exogenous insulin replacement for survival (Johnson, 1995
While the relationship between family conflict and adherence to treatment
in type 1 diabetes has been relatively well established
(Anderson, Miller, Auslander, &
Santiago, 1981
; Hauser et al.,
1990
; Jacobson et al.,
1994
; Marteau, Bloch, &
Baum, 1987
; Miller-Johnson et
al., 1994
; Rubin, Young-Hyman,
& Peyrot, 1989
; Wysocki,
1993
), the factors that contribute to such conflict have not been
well documented. Potentially important triggers of family conflict include the
influence of the child's behavioral autonomy and discrepancies between parent
and child perceptions of autonomy. Holmbeck's
(1996
) model of
parentchild relational change during adolescence suggests that
significant changes in the adolescent's physical, social, and cognitive
development may trigger discrepancies between parent and adolescent
perceptions of and expectations of one another. Such discrepancies in
parentadolescent perceptions may result in conflict and precipitate
changes in the parentadolescent relationship, including changes in the
adolescent's decision-making autonomy
(Collins & Luebker, 1994
;
Hill & Holmbeck, 1986
;
Holmbeck, 1996
;
Holmbeck & O'Donnell,
1991
). Through a series of conflicts and negotiations regarding
the adolescent's level of autonomy, the perceptions of mothers and adolescents
may converge over time (Collins, Laursen,
Mortenson, Luebker, & Ferreira, 1997
; Holmbeck &
O'Donnell).
Discrepancies in parentchild perceptions of autonomy and
responsibility for diabetes care may also have implications for the successful
clinical management of type 1 diabetes. In support of this notion, Anderson,
Auslander, Jung, Miller, and Santiago
(1990
) examined discrepancies
between parents' and children's perceptions of responsibility for diabetes
tasks in a sample of children and adolescents ages 6 to 21 years. Higher
levels of dyadic scores indicating "no one takes responsibility"
(e.g., both the adolescent and the mother reported that the other is
responsible for the task) predicted worse metabolic control, even after
controlling for levels of treatment adherence.
However, Anderson et al.
(1990
) examined only one type
of discrepancy between parent and child perceptions of responsibility for
diabetes-related tasks, which occurs when both the parent and the child report
that the other person takes more responsibility for a specific
diabetes-related task. In such dyads, the child believes that he or she does
not have autonomy, but the parent believes that the child does have this
autonomy. Another type of discrepancy, which was not identified by Anderson et
al. (1990
), occurs when
children or adolescents feel they are more in charge of diabetes-related tasks
than their parents report (Holmbeck &
O'Donnell, 1991
). Previous research suggests that both types of
discrepancies in perceptions of decision-making autonomy are important in the
changing parentchild relationship during adolescence
(Holmbeck & O'Donnell,
1991
).
This study was designed to extend the scientific research concerning
self-management of diabetes among adolescents in several ways. First, in
contrast to previous studies, it examined patterns of discrepancies in
perceptions of autonomy in a sample of adolescents with diabetes and their
mothers and their relationship to diabetes-related conflict and adherence to
diabetes treatment. Second, while previous studies on self-care autonomy have
examined responsibility for the performance of diabetes tasks (i.e., who gives
insulin injections, who tests blood), to our knowledge, few studies have
examined parent and adolescent perceptions of autonomy concerning specific
decisions related to diabetes tasks. Perceived diabetes-related
decision-making autonomy refers to the degree to which the parent or child
feels that he or she is responsible for making decisions about
diabetes-related issues (i.e., when to give injections; how often to test
blood). The development of decision-making autonomy is a major task of
adolescence (Liprie, 1993
) but
may also become a source of conflict between parents and adolescents because
parents may not accept increased decision-making autonomy
(Emery, 1992
). Given the
complex nature of the treatment regimen for diabetes, a detailed description
of perceptions of diabetes-related decision-making autonomy during adolescence
and its relevant correlates is particularly important.
Third, this study employed a more refined methodological approach to
examine discrepancies in perceptions of decision-making autonomy than any used
in previous studies. Holmbeck, Li, Schurman, Friedman, and Coakley
(2002
) have suggested that
regression analyses can be used as an alternative to difference scores to test
the significance of parentadolescent perspectives in predicting
relevant psychological outcomes. This method limits some of the disadvantages
typically associated with the examination of discrepancies in the perceptions
of multiple informants, such as curvilinear distributions and loss of
information about the direction of discrepancies (see
Holmbeck et al., 2002
, for a
detailed discussion).
Designed to address these gaps in previous research, this study assessed
the relationships among discrepancies between mother and adolescent
perceptions of diabetes-related decision-making autonomy, frequency of
conflict between mothers and adolescents about diabetes-related issues, and
adherence to treatment. Based on Holmbeck's
(1996
) model of relational
transformation and previous findings, our first hypothesis was that greater
discrepancies between adolescent and mother reports of diabetes-related
decision-making autonomy would be associated with more frequent
diabetes-related conflict. Our second hypothesis was that greater
discrepancies between adolescent and mother reports of diabetes-related
decision-making autonomy would relate to decreased adherence. The absence of a
mutual understanding between adolescents with type 1 diabetes and their
parents concerning decision making about diabetes-related tasks presumably
undermines the efficiency of task management and compliance with diabetes
treatment (Anderson et al.,
1990
).
| Method |
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Participants
This study included 82 motheradolescent dyads. The demographics are shown in Table I. The adolescents were between the ages of 11 and 17 years and had a diagnosis of type 1 diabetes for at least a year. Adolescents had no other major chronic health conditions requiring daily medications. All of the participants showed some development in three key areas of pubertal change (for girls, menarche, pubic hair, and breast development; for boys, pubic hair, facial hair, and voice changes) (Peterson, Crockett, Richards, & Boxer, 1988
|
Measures
Pubertal Development. The Pubertal Development Scale
(Peterson et al., 1988
)
measures pubertal status and was completed by adolescents. Pubertal status was
measured to control for its potential effects on diabetes-related conflict and
adherence to treatment. Pubertal status, rather than age, was used because
pubertal processes are believed to initiate the changes in the
parentchild relationship during adolescence
(Holmbeck, 1996
;
Paikoff & Brooks-Gunn,
1991
; Steinberg,
1987
). Higher scores on this scale indicate greater physical
changes related to puberty. The coefficient alpha was .81 for boys and .80 for
girls. Adequate validity was established in a previous study
(Peterson et al., 1988
).
Oppositional Behavioral Symptoms. Category C of the
Adolescent Symptom Inventory-4 was used to assess adolescent oppositional
behavior as perceived by mothers (Gadow
& Sprafkin, 1997
). This measure was used to control for
oppositional symptoms in the analysis of the relationships between
discrepancies in perceptions of decision-making autonomy, diabetes-related
conflict, and adherence to treatment. It included eight items and asks mothers
to rate how frequently each behavior occurs on a scale from never to very
often. Higher scores indicate a higher frequency of oppositional behaviors.
The coefficient alpha was .85. Prior research demonstrates adequate validity
(Gadow & Sprafkin,
1997
).
A demographic questionnaire completed by mothers was used to collect information about the adolescent (age, gender, grade, race, and duration of illness) and the mother and family (age, marital status, family composition, occupation, education, and income).
Diabetes-Related Autonomy. The Deciding About Diabetes
Treatment Scale measures both adolescents' and parents' perceptions of the
degree of autonomy the adolescent has in making decisions about diabetes
self-care tasks (Saletsky,
1991
). For each item, the respondent indicated whether (a) the
mother tells the child to complete the task; (b) the mother and child discuss
the task, but the mother has the final say about it; (c) the mother and child
discuss the task, but the child has the final say about it; or (d) the child
decides on his or her own to complete the task. Higher scores indicate greater
adolescent decision-making autonomy as perceived by the respondent. In this
sample, the coefficient alpha was .87 for adolescent report and .93 for mother
report.
Diabetes-Related Conflict. The Conflict subscale of the
Diabetes Responsibility and Conflict Scale measures the frequency of
parentchild conflict over 15 diabetes tasks
(Rubin et al., 1989
). Higher
scores indicate frequent diabetes-related conflict. The coefficient alpha was
.85 for mother report and .94 for adolescent report. Scores on this subscale
were significantly related to scores on the Conflict subscale of the Family
Environment Scale, suggesting that this subscale is a valid measurement of
conflict (Rubin et al.,
1989
).
Adherence. The Self-Care Inventory measures adherence to
the diabetes treatment regimen over the past month
(Greco et al., 1990
). In this
sample, the 14 items yielded an alpha of. 83 for mother report and .86 for
adolescent report. The questionnaire correlates well with the 24-hour recall
interview method, suggesting adequate validity
(Greco et al. 1990
). The mean
values obtained for mother and adolescent report of adherence were similar to
previous research using the same measure
(Harris, Greco, Wysocki, Elder-Danda,
& White, 1999
; Wysocki et
al., 2000
).
Each child's nurse completed a Health Care Provider Rating questionnaire
based on an adherence measure used by La Greca, Follansbee, and Skyler
(1990
). It assessed the degree
to which the child and his or her family have been compliant for nine aspects
of diabetes care. Higher scores indicate greater adherence to the treatment
regimen. In this sample, the coefficient alpha was .91. The mean value for
nurse report of adherence was similar to that in previous research using this
measure (La Greca et al.,
1990
).
Each adolescent's medical chart was reviewed to obtain the average number of glucose tests performed each day over 2 weeks prior to the clinic appointment, which is recorded in the adolescent's glucose meter as a part of the treatment regimen. This number was used as an objective measure of how well the adolescent adheres to blood glucose testing. When more tests were performed each day, adolescents were considered to be more adherent to blood glucose testing.
Procedure
The study was approved by the institutional review board. Physicians were
informed of the study and gave their consent for parents to be contacted.
Letters were sent informing potential participants about the study. If the
mother agreed to participate over the phone, the investigator or research
assistant met the families prior to their regularly scheduled clinic
appointments. After obtaining informed consent from the mother, assent was
obtained from the adolescent. Participants then completed the study packets at
the clinic visit. Both adolescents and mothers were compensated $5.00 for
their participation in the study.
Of the original 190 families who were sent letters, 133 were reached by
phone. Of these 133 families, 49 did not qualify(16%), refused to participate
(9%), or were unable to participate due to scheduling difficulties (12%).
Eighty-four (63%) motheradolescent dyads completed the questionnaires.
Of these, two dyads were eventually excluded because they did not meet the
previously described inclusion criteria. Participants were equivalent to the
non-participants in terms of gender and age. However, non-participants were
more likely to be African American than Caucasian compared to participants,
2 = 8.69, p < .003.
| Results |
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Descriptive Findings
The means, standards deviations, and ranges for perceptions of diabetes-related decision-making autonomy, diabetes-related conflict, and adherence are presented in Table II. Table III presents Pearson product-moment correlations among the major variables, using a Bonferroni correction for multiple tests.
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Description of Approach to Regression Analyses
Regressions using pairwise deletion for missing data were used to test the
hypothesized relationships between discrepancies in mother and adolescent
perceptions of diabetes-related decision-making autonomy, diabetes-related
conflict, and adherence to the diabetes treatment regimen. First, pubertal
status and adolescent oppositional behaviors were entered into the regression
to control for their potential effects on diabetes-related conflict and
adherence to the diabetes treatment regimen. Next, adolescent and mother main
effects for perceptions of decision-making autonomy were entered as a single
step in the regression. Finally, the interaction of the adolescent and mother
terms was entered.
Regression Analyses Predicting Maternal Report of Diabetes-Related
Conflict
First, we examined the main effects of adolescent and mother reports of
diabetes-related decision-making autonomy on diabetes-related conflict. There
were main effects on maternal report of diabetes-related conflict for mother
and adolescent report of adolescent autonomy (R2 change =
.07, p < .04; see Table
IV). In other words, when adolescents perceived that they were
more in charge of diabetes-related decisions, mothers perceived more
diabetes-related conflict.
|
As illustrated by the values in Table
V, the direct effects of mother and adolescent report of
adolescent decision-making autonomy on diabetes-related conflict were larger
than the zero-order (unpartialed) effects. This pattern of results, confirmed
by additional calculations described by Cohen and Cohen
(1983
), indicated that pubertal
status was a suppressor variable. In other words, because pubertal status was
related positively to adolescent decision-making autonomy but negatively to
diabetes-related conflict, the relationship between adolescent decision-making
autonomy and diabetes-related conflict was obscured in zero-order
correlations. When pubertal status was controlled for in the regression
analyses, a significant positive relationship between adolescent
decision-making autonomy and diabetes-related conflict emerged.
|
We then examined the significance of the interaction term to test the
hypothesis that greater discrepancies between adolescent and mother
perceptions of adolescent autonomy would relate to greater maternal report of
diabetes-related conflict. There was a significant effect on mother report of
diabetes-related conflict for the interaction of mother and adolescent report
of diabetes-related decision-making autonomy (R2 change =
.20, p < .0001), indicating that greater discrepancies were
related to greater diabetes-related conflict. However, the presence of
significant main effects (Holmbeck,
1989
) indicated that this was true only for discrepancies in which
adolescents perceived that they were more in charge of making diabetes-related
decisions than was attributed to them by mothers. The overall regression model
accounted for 54% of the variance in mother report of diabetes-related
conflict. The results remained significant after controlling for duration of
illness.
For illustrative purposes, we used median splits to create four possible adolescent-mother groups based on reports of adolescent diabetes-related decision-making autonomy. Two of these groups involved discrepancies between mother and adolescent reports of diabetes-related decision-making autonomy in individual dyads: mother high/adolescent low, and mother low/adolescent high. Two other groups reflected congruence between mother and adolescent reports of diabetes-related decision-making autonomy: mother high/adolescent high, and mother low/adolescent low. The means for these groups are presented in Table VI. As illustrated by the regression analyses, the direction of the means shows that the highest mother report of diabetes-related conflict scores was found when adolescents reported more diabetes-related decision-making autonomy than was attributed to them by mothers (mother low/adolescent high; see Figure 1).
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Regression Analyses Predicting Adolescent Report of Diabetes-Related
Conflict
There were no significant main effects or interactions when adolescent
report of diabetes-related conflict was used as the dependent variable. Only
adolescent oppositional symptoms were related to adolescent report of
diabetes-related conflict. More adolescent oppositional symptoms predicted
more diabetes-related conflict as reported by adolescents
(R2 change = .06, p < .05).
Regression Analyses Predicting Adherence to the Diabetes Treatment
Regimen
The second hypothesis was that discrepancies in mother and adolescent
perceptions of diabetes-related decision-making autonomy would relate to
decreased adherence to the treatment regimen. There were no main effects for
mother report or adolescent report of adolescent diabetes-related
decision-making autonomy on adherence. Contrary to the hypothesis, the
interaction of mother and adolescent reports of autonomy was not significant
in predicting adherence. Greater discrepancies between mother and adolescent
perceptions of decision-making autonomy were not related to worse adherence.
This was true for each of the four measures of adherence (mother report,
adolescent report, nurse report, and number of glucose tests per day). Only
adolescent oppositional symptoms were related to reports of adherence. More
adolescent oppositional symptoms predicted lower mother report of adherence
(R2 change = .11, p < .01) and lower nurse
report of adherence (R2 change = .08, p <
.02).
Exploratory Analyses
To examine whether discrepancies between adolescent and mother perceptions
of diabetes-related decision-making autonomy were related to metabolic control
of diabetes, a regression analysis was run using glycohemoglobin as the
dependent variable. Glycohemoglobin provides information about average blood
glucose values over the previous 2 to 3 months and is an accepted measure of
diabetic control. The reference range for the lab value used in this study is
4 to 8. The results of the regression were not significant in predicting
metabolic control of diabetes, indicating that greater discrepancies between
adolescent and mother perceptions of diabetes-related decision-making autonomy
did not predict worse metabolic control (R2 change = .01,
p < .61).
| Discussion |
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To our knowledge, our finding that greater discrepancies in mother and adolescent perceptions of diabetes-related decision-making autonomy were related to higher diabetes-related conflict has not been previously documented. Specifically, when adolescents perceived that they had more autonomy for diabetes-related decision making than mothers attributed to them, mothers reported more diabetes-related conflict. In contrast, discrepancies in which adolescents reported that they were less in charge of decisions than was reported by mothers did not relate to more diabetes-related conflict. Increased conflicts may be related to the first type of discrepancy because, in this case, mothers may be unwilling to grant decision-making autonomy to the adolescent. Consequently, the adolescents may attempt to gain control over these decisions, a process that may be associated with more conflict between parents and adolescents (Holmbeck & O'Donnell, 1991
Conflicts between adolescents and mothers may allow them to confront the
discrepancies in their perceptions through a series of conflicts and
negotiations regarding the adolescent's level of autonomy
(Holmbeck & O'Donnell,
1991
). While such conflict may promote changes in the
parentadolescent relationship that allow it to attain greater maturity,
it may also affect adherence and metabolic control in adolescents with
diabetes. For example, consistent with previous studies
(Jacobson et al., 1994
;
Miller-Johnson et al., 1994
;
Rubin et al., 1989
), these
findings indicated that greater diabetes-related conflict was related to worse
adherence to the diabetes treatment regimen.
Though there were no specific hypotheses regarding main effects of mother
and adolescent report of diabetes-related decision-making autonomy on
diabetes-related conflict, an interesting finding emerged from the regression
analyses suggesting that pubertal status was a suppressor variable. The
pattern of findings indicated that after partialing out increases in
decision-making autonomy related to puberty, increased adolescent autonomy was
related to increased diabetes-related conflict as reported by mothers. A
possible explanation for this finding is that increases in adolescent autonomy
that occur independently of pubertal development may be associated with
greater conflict because they may be occurring at unexpected or inappropriate
times (e.g., not in accordance with physical or cognitive development). This
hypothesis warrants further study, given the importance of appropriate
transfer of diabetes-related responsibilities to the adolescent
(Ingersoll, Orr, Herrold, & Golden,
1986
; Wysocki et al.,
1996
).
Contrary to predictions, discrepancies between mother and adolescent perceptions of diabetes-related decision-making autonomy were not related to adherence to the diabetes treatment regimen. Similarly, there was no relationship between discrepancies in perceptions of autonomy and metabolic control of diabetes. One explanation for this finding is the lack of correspondence between perceptions of decision making about diabetes tasks and adherence to the diabetes treatment regimen, which is concerned with the actual performance of diabetes-related management tasks. For example, the mother may decide that it is time for the child to test his or her blood, but the child may actually perform the test. In this way, the decision about when to test blood can be differentiated from the responsibility for performing the task. Adherence is concerned with the actual performance of the task, regardless of who makes decisions related to those tasks.
This study has several limitations, each with implications for future
research. First, we relied on self-reports of decision-making autonomy.
Self-reports of diabetes-related decision-making autonomy may not reflect
actual behavior regarding who makes decisions about diabetes management tasks.
A second, related limitation is that, while the aim was to assess perceptions
of decision making about diabetes management tasks, parents and adolescents
may not actually experience these as day-to-day decisions that require
discussion and planning. For example, several mothers who participated
asserted that there is little discussion about these decisions in their
families, because they follow an "automatic" routine regarding
diabetes management. Future research should employ observational measures of
family interactions, including the expression and facilitation of adolescent
autonomy (e.g., Maharaj, Rodin, Olmsted,
Connolly, & Daneman, 2001
).
A third limitation of the study is its lack of generalizability to older adolescents, ethnic minority families, and adolescents from lower-income families. Our sample was representative of the population served by our diabetes clinic and included predominantly younger adolescents, who were Caucasian and from middle to upper-middle-class families. However, the sample may be biased in that it may not be representative of the general population of adolescents with type 1 diabetes. Additional research is necessary to determine if discrepancies in perceptions of diabetes-related decision-making autonomy operate in a similar way in adolescents who represent a broader range of ethnicities and socioeconomic levels. In addition, we considered only the motheradolescent dyad. Therefore, our findings are not necessarily generalizable to the fatheradolescent dyad or to other caregivers of children with diabetes (e.g., grandparents).
Finally, while the conceptual model we used was designed to explain changes
in parentadolescent relationships over time
(Holmbeck, 1996
), this study
was cross-sectional. The precise direction of the association between
discrepancies in perceptions and conflict is impossible to determine in a
cross-sectional study. For this reason, longitudinal designs are necessary to
address the causal and directional relationship between discrepancies in
parent adolescent perceptions of decision-making autonomy and
conflict.
Our findings have potential clinical implications for the management of diabetes in adolescents. For example, future interventions that aim to reduce conflict in families of adolescents with diabetes might target discrepancies in perceptions of diabetes-related decision-making autonomy, because these discrepancies may precipitate or maintain conflict. However, in our data, it is unclear if targeting discrepant perceptions will improve diabetes-related health behaviors such as adherence to the treatment regimen.
In addition, it may be beneficial for health care professionals who treat
children and adolescents with diabetes to provide education and guidance
regarding the likely changes during adolescence with respect to
parentadolescent relationships and diabetes management. For example,
visits to the diabetes specialist, which occur every 3 to 4 months, provide a
regular opportunity for adolescents and parents to discuss changing
perceptions and roles concerning diabetes management tasks. In addition, the
transfer of diabetes-related decision-making autonomy from parents to
adolescents can be monitored and emerging conflicts regarding the impact of
such transfer can be addressed on an ongoing basis
(Koocher, McGrath, & Gudas,
1990
).
Our findings suggest several possible areas for future investigation.
First, future studies should examine how discrepancies in parent and
adolescent perceptions of autonomy operate at different ages. Second, it would
be useful to compare how decision-making autonomy is achieved and how
discrepant perceptions and conflict operate for normative versus
diabetes-related issues. For example, parents may be more reluctant to grant
autonomy for diabetes-related issues due to a concern for the potential
short-term (e.g., hypoglycemia) and long-term (e.g., neuropathy or nerve
damage) complications of diabetes. Finally, future studies should examine the
role of both mothers and fathers in diabetes management tasks and conflict
about diabetes-related issues. Like previous research, this study considered
only the motheradolescent dyad. However, the father's role may be
equally important or may have a different relationship to diabetes management
than the mother's role (Leonard, Kratz,
Skay, & Rheinberger, 1997
), and this relationship warrants
further investigation.
| Acknowledgments |
|---|
This research was supported in part by grants from the National Institutes of Mental Health (#18830) and from the Armington Research Program on Values in Children at Case Western Reserve University. We thank members of the Division of Pediatric Endocrinology/Metabolism at Rainbow, including Dr. William Dahms, Dr. Douglas Kerr, Dr. Leona Cuttler, Paul McGuigan, Carol Meszaros, and Wendy Campbell for their support throughout this project. This article is based on the master's thesis of Victoria A. Miller.
Received February 22, 2002; revision received May 23, 2002; revision received August 5, 2002; accepted August 7, 2002
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