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. Author manuscript; available in PMC: 2010 Mar 22.
Published in final edited form as: Fam Syst Health. 2009 Jun;27(2):141–152. doi: 10.1037/a0015759

Dyadic Measures of the Parent-Child Relationship During the Transition to Adolescence and Glycemic Control in Children with Type 1 Diabetes

Barbara J Anderson 1, Grayson Holmbeck 2, Ronald J Iannotti 3, Siripoom V McKay 4, Amanda Lochrie 5, Lisa K Volkening 6, Lori Laffel 7, For the Steering Committee of the Family Management of Childhood Diabetes Study
PMCID: PMC2843423  NIHMSID: NIHMS106762  PMID: 19630455

Abstract

To identify aspects of family behavior associated with glycemic control in youth with type 1 diabetes mellitus (T1DM) during the transition to adolescence, we studied 121 9- to 14-year-olds (M = 12.1 yrs) and their parents, who completed the Diabetes Family Conflict Scale (DFCS) and the Diabetes Family Responsibility Questionnaire (DFRQ). From the DFRQ, we derived 2 dyadic variables, frequency of agreement (parent and child concurred exactly on who was responsible for a task) and frequency of discordance (parent and child had completely opposite reports of who was responsible). To examine the relationship between these variables and age, we divided the cohort into Younger (n = 57, M = 10.6 yrs) and Older (n = 64, M = 13.5 yrs) age groups. Family conflict was significantly related to glycemic control in the entire cohort and in both the Younger and Older age groups. However, only in the Younger (pre-teen) group was Agreement about responsibility for diabetes tasks related to glycemic control, with higher Agreement associated with better glycemic control. Findings suggest that Agreement about sharing of diabetes management responsibilities may be an important target for family-based interventions with pre-teen youth to optimize glycemic control during their transition to adolescence.

Introduction

Type 1 diabetes mellitus (T1DM), the second most common chronic illness of childhood after asthma, has a complex medical management regimen which requires multiple daily injections of insulin, pricking a finger several times a day to monitor blood glucose levels, and adjusting insulin dosages based on the child's blood glucose level, food intake, and physical activity (Silverstein et al., 2005). These behavioral tasks are carried out in order to keep blood glucose levels as close to normal as possible. Adherence to the diabetes regimen is important because blood sugar levels kept as close to normal as possible, from as early in the disease course as possible, help to prevent or delay the devastating long-term complications of T1DM, such as blindness, kidney disease, amputations, heart attacks and stroke (DCCT Research Group, 1993; EDIC Research Group, 2001). Moreover, adhering to these regimen requirements is especially challenging when they intersect and clash with developmentally typical behaviors encountered at different stages of child development (Anderson & Brackett, 2005; Piazza-Waggoner et al., 2008).

Optimal glycemic control is the most difficult to establish and maintain during the early adolescent period because of the normal ‘insulin resistance’ that occurs during puberty (Amiel, Sherwin, Simonson, Lauritano, & Tamborlane, 1986). In addition to this basic biological phenomenon, the normal developmental tasks of early adolescence involving transitions in family roles and peer relationships often interfere with adherence to the diabetes treatment regimen (Anderson & Auslander, 1989; Wysocki et al., l996). Young adolescents frequently seek a new level of separation from their parents, while simultaneously intensifying attachments to peers (Levitt, Guacci-Franco, & Levitt, 1993).

Recent family studies of youth with T1DM have documented an erosion of parental involvement and support for diabetes management tasks during the early adolescent years (Anderson, Auslander, Jung, Miller, & Santiago, 1990; Anderson, Ho, Brackett, Finkelstein, & Laffel, 1997; Skinner, Murphy, & Huws-Thomas, 2005; Schilling, Knafl, & Grey, 2006; Wysocki et al., 1996). Moreover, empirical research has documented a steady decrease in adherence to diabetes treatment during early adolescence (Johnson, Silverstein, Rosenbloom, Carter, & Cunningham, 1986; Harris et al., 2000). However, empirical studies have also shown that young adolescents who have more parental involvement, monitoring, and teamwork in their diabetes management tend to achieve and maintain better diabetes outcomes (Anderson et al., 1997; Allen, Tennen, McGrade, Affleck, & Ratzan, 1983; Ingersoll, Orr, Herrold, & Golden, 1986; Palmer et al., 2004; Wiebe et al., 2005).

In the general child development literature, it is well-documented that conflict between parents and children often increases during the transition to adolescence (Holmbeck, 1996). Both diabetes-specific family conflict and general family conflict have been associated with poor adherence and poor glycemic control during the early adolescent years (Anderson et al., 2002; Hauser et al., 1990). In a qualitative study of transfer of diabetes management responsibilities and conflict in parent-child dyads over the adolescent period, Schilling et al. (2006) reported that parents of 8- to 11-year-old children with diabetes took active steps to transfer responsibility for diabetes management to their children, with only moderate amounts of conflict. Moreover, parents of 12- to 15-year-old youth continued to transfer increasing amounts of responsibility to their children despite increasing levels of conflict in the dyad.

Because of the deterioration in glycemic control, increase in family conflict, and the shifts that occur in how parents and their older school-aged children share responsibilities for the complex tasks demanded in the daily management of T1DM, behavioral interventions to enhance health outcomes in youth with T1DM have recently focused on the parent-child dyad (Anderson, Brackett, Ho, & Laffel, 1999; Ellis et al., 2005; Wysocki, Harris, Buckloh, Mertlich, et al., 2006.).

Dyadic measures provide a perspective into family relationships that is not possible with self-report measures that are limited to personal behavior or with global assessments of family functioning (Cook & Kenny, 2006). In an effort to identify aspects of family behavior associated with glycemic control in youth with T1DM during the transition to adolescence, we measured diabetes-specific parent-child conflict and parent-child dyadic agreement and disagreement regarding which specific family member had primary responsibility for a range of different diabetes management tasks critical to health outcomes in young adolescents. We hypothesized that better glycemic control would be associated with lower diabetes-specific family conflict, higher dyadic agreement and lower dyadic discordance in youth with T1DM and their parents. We also sought to explore age-related differences in how these family behaviors were associated with glycemic control in the 9- to 14-year-old youth in this study.

Method

Participants

Children with T1DM and their primary caregivers were recruited from four large pediatric tertiary care diabetes centers in Boston, MA, Chicago, IL, Houston, TX, and Jacksonville, FL, to participate in a multi-site pilot and feasibility study of an intervention designed to optimize family adaptation to childhood diabetes during late childhood and early adolescence. The participating parent/guardian was the adult primarily responsible for the child's diabetes management; only one parent participated per family. The data reported here were derived from the baseline assessment, which occurred prior to assignment of families to different treatment groups.

Trained research staff at each site reviewed medical record data to identify eligible patients with upcoming clinic appointments. Eligible families were then recruited both at clinic visits and by telephone. In order to examine age differences in diabetes–specific family interactions over the transition to early adolescence, we recruited youth between 9 and 14.5 years of age at baseline. Other youth eligibility criteria included: T1DM duration of at least 1 year; insulin dose of at least 0.5 units/kg/day; at least 2 clinic visits at the diabetes center during the past year; mean hemoglobin A1c (HbA1c) less than 13.0% during the prior 8 months; no other major chronic disease or cognitive disability; and no psychiatric hospitalization within the prior 6 months. Enrollment criteria for parents/guardians included: at least a 5th grade reading fluency in English; no diagnosis of psychosis, substance use disorder, major depression, or bipolar disorder; no psychiatric hospitalization in the prior 6 months; and a working telephone service. Because the intervention to be tested in this pilot study required participants to engage in family problem-solving processes, parents and youth with depression or serious mental health diagnoses were excluded. All parents or legal guardians signed institution-approved informed consent forms and all youth assented to participate in the study using each center's approved procedures.

A total of l67 eligible families were invited to participate in the study and 131 (79%) initially agreed to participate. However, 10 families declined participation when contacted to schedule the baseline assessment, resulting in a final sample of 121 families (73%), with 29-31 families at each of the four clinical sites. Because this pilot and feasibility study was designed to assess the ability of the research team at each of the four sites to implement a clinic-based intervention with a representative sample of families at each site, we did not perform power analyses to establish the final sample size.

Procedure

Trained, two-person interviewing teams who were not affiliated with the clinics conducted the baseline assessments in families' homes with the parent and youth. Parents and youth completed several assessment measures simultaneously, but with different interviewers and in different rooms to allow for privacy of responses. Data from two of the psychosocial assessment instruments completed at the baseline assessment will be reported here. These two measures are the Diabetes Family Responsibility Questionnaire (Anderson et al., 1990) and the Diabetes Family Conflict Scale (Hood, Butler, Anderson, & Laffel, 2007). Parents and youth also both completed the following assessment measures: the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales and Diabetes Module (Varni, Seid, & Kurtin, 2001; Varni et al., 2003); the Hypoglycemia Fear Survey-Worry Subscale (Cox, Irvine, Gonder-Frederick, Nowacek, & Butterfield, l987); and the Blood Glucose Monitoring Communication survey (Hood, Butler, Volkening, Anderson, & Laffel, 2004). Youth also completed the Beck Depression Inventory for Children (Beck, Beck, & Jolly, 2001) or the Children's Depression Inventory (Kovacs, 1985); the Diabetes Management Self-Efficacy Scale (Iannotti et al., 2006); and several surveys assessing youth perception of parenting style and involvement (Barber, 1996; Jackson, Henriksen, & Foshee, 1998; Nansel, Rovner, et al., 2008; Smetana & Asquith, 1994). Parents also completed the Child Maturity Scale (Hartos, Eitel, & Simons-Morton, 2001); the Confusion, Hubbub, and Order Scale (CHAOS) (Matheny, Wachs, Ludwig, & Phillips, 1995); and the Diabetes Management Outcomes Expectations scale (Iannotti et al., 2006). For a complete description of the pilot and feasibility intervention study, see Nansel, Anderson, et al., 2008.

Measures

Diabetes Family Responsibility Questionnaire (DFRQ)

The DFRQ is a 17-item questionnaire that measures parent involvement in diabetes management tasks (Anderson et al., 1990). For each of the 17 diabetes management tasks, respondents rated the responsibility for the task as belonging primarily to the child (1), shared about equally between child and parent (2), or belonging primarily to the parent (3). Higher scores indicate increasing levels of parent responsibility for diabetes management. Acceptable internal consistency and test-retest reliability have been previously reported (Anderson et al., 1990). The alpha coefficients for the present sample were adequate, with alpha of .67 for parents and alpha of .73 for youth.

Derived dyadic variables

Within each family, we compared the parent and child responses to each of the 17 items on the DFRQ, following the method for deriving dyadic variables described by Anderson et al. (1990). This method captures extreme reports as recommended for the DFRQ and yields two derived dyadic variables: agreement and discordance. Agreement occurred when the child and parent agreed exactly in their report of who had responsibility for a specific diabetes management task (e.g., both respondents reported that the parent had primary responsibility for the task). Discordance occurred when the child and the parent had the exact opposite report of who had responsibility for a specific diabetes management task (e.g., one person reported that the parent had primary responsibility and the other person reported that child had primary responsibility). The number of items for which there was exact parent-child agreement was summed to obtain a total agreement score. Similarly, the number of items for which there was parent-child discordance (exact opposite reports) was summed to obtain a total discordance score. Therefore, agreement and discordance scores could range from 0 to 17.

Table 1 illustrates dyadic agreement and discordance per item on the DFRQ according to parent and child response following the method suggested by Anderson and colleagues (1990). Agreement occurred when the child and parent agreed exactly in their report of who takes responsibility for a specific diabetes management task; this is represented in the 3 cells along the left-to-right diagonal. Discordance occurred when the report of responsibility was completely opposite between the parent and child; this is represented in two cells, the upper right corner and the lower left corner. A third scenario exists, in which a dyad could have partial agreement (or partial discordance) in their responses for a specific diabetes management task. For example, this would occur if one person said that the parent had primary responsibility and the other person said that the responsibility was shared. This is represented by the remaining cells in the table (the empty cells).

Table 1.

Derivation of Dyadic Variables of Agreement and Discordance According to Child and Parent Response for each DFRQ Item

Parent report
Child report (1) Child (2) Shared (3) Parent
(1) Child Agreement Discordance
(2) Shared Agreement
(3) Parent Discordance Agreement
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Note. Empty cells represent partial agreement between parent and child.

Note. This table depicts how the variables of agreement and discordance are derived for a parent-child dyad for a single item on the DFRQ. This process is repeated for each of the 17 items on the DFRQ and the individual item values are summed to arrive at the total agreement and discordance scores.

Diabetes Family Conflict Scale (DFCS)

Youth and parents completed a 15-item version of the Diabetes Family Conflict Scale (Hood et al., 2007; Rubin, Young-Hyman, & Peyrot, l989). Each parent and child indicated the amount of family conflict that occurred for each of 15 aspects of diabetes management. The score is the sum of the items on which any amount of conflict was endorsed. Alphas reported for the scale have been strong: youth = .85, parent = .81 (Hood et al., 2007). The alpha coefficients for the present sample were .90 for parents and .95 for youth.

Glycosylated hemoglobin (HbA1c)

This blood test estimates average glycemic concentration over the prior 2 to 3 months (Chase, 2006). The patients attended their regular diabetes clinic appointment approximately two weeks after the in-home baseline assessment. Patient blood samples were obtained by fingerstick at their regular clinic appointments. Samples were shipped to a central lab at the Joslin Diabetes Center for processing using the Tosoh High Performance Liquid Chromatography 2.2 method (Tosoh Corporation, Foster City, CA). Joslin is a reference laboratory for this assay, which has been standardized against the Diabetes Control and Complications (DCCT) reference laboratory; the reference range is 4.0 to 6.0%.

Statistical Analysis

Statistical analyses were conducted using SAS (version 8.2 for Windows, SAS Institute, Inc., Cary, NC). Univariate analyses were examined first. An alpha level of .05 was used to determine statistical significance. The Younger and Older Cohorts were compared using t tests. Pearson correlations were used to examine relationships between age, HbA1c, dyadic agreement, dyadic discordance, and diabetes-specific family conflict. A regression model was constructed to control for the complex relationships between variables, with the goal of further establishing the factors associated with glycemic control in this sample.

Results

The mean age of the 121 youth was 12.1 ± 1.6 years; 50% of youth were female. The study sample was ethnically and racially diverse, with 71% Caucasian, 12% African American, 10% Hispanic, and 7% reporting ‘Other or mixed’ ethnicity. The mean duration of diabetes was 5.4 ± 3.1 years and the mean HbA1c was 8.4 ± 1.4%. Pubertal status, by Tanner staging, was available for 73% of the sample. Of these 88 youth, 32% were pre-pubertal (Tanner I), 56% were pubertal (Tanner II-IV), and 13% were post-pubertal (Tanner V). The mean age of pre-pubertal, pubertal, and post-pubertal youth was 10.7 ± 1.1 years, 12.0 ± 1.4 years, and 13.8 ± 0.6 years, respectively. The subset of youth with no Tanner staging data (n=33) was significantly older than the 88 youth with Tanner staging data (12.9 ± 1.5 years vs. 11.8 ± 1.6 years, p < .001) and had a smaller proportion of females (33% vs. 56% female, p < .03).

To explore age-related differences in family behaviors between pre-pubertal and pubertal youth, we divided the sample into two groups. Because Tanner staging data were only available for 73% of the sample, and because of the differences in age and gender between those with and without Tanner staging data, we used age as a proxy for pubertal status when defining the two age groups. The Younger Cohort (n = 57) included youth under 12 years of age and the Older Cohort (n = 64) included youth 12 years and older. This division was consistent with the mean age of pubertal youth (12.0 ± 1.4 years). Indeed, when considering only the 88 youth with Tanner staging data, the Younger Cohort was 50% pre-pubertal and 50% pubertal and the Older Cohort was 10% pre-pubertal, 63% pubertal, and 28% post-pubertal (χ2 = 24.8, p < .0001).

The mean age of the 57 youth in the Younger Cohort was l0.6 ± 0.7 years and the mean age of the 64 youth in the Older Cohort was 13.5 ± 0.7 years. There were no significant differences between the two groups with respect to gender, duration of diabetes, or HbA1c. Table 2 displays characteristics of the entire sample and the Younger and Older Cohorts. Almost all of the participating parents/guardians were mothers (n = 111, 91%); of the remaining adults, there were 8 fathers (7%), 1 stepmother (1%), and 1 grandmother (1%). A majority of parents/guardians had some education beyond high school: 14% had a graduate degree, 32% had a college degree, 35% had some college education, 17% had a high school diploma, and 3% had less than a high school diploma.

Table 2.

Participant Characteristics for the Entire Sample and by Age Cohort

All Participants
(N = 121)		 Younger Cohort
(n = 57)		 Older Cohort
(n = 64)		 P*
Gender (% female) 50 54 45 .32
Age (years) 12.1 ± 1.6 10.6 ± 0.7 13.5 ± 0.7
Diabetes duration (years) 5.4 ± 3.1 5.2 ± 2.6 5.6 ± 3.6 .41
HbA1c (%) 8.4 ± 1.4 8.2 ± 1.4 8.7 ± 1.3 .08
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*

Younger vs. Older Cohort

The dyadic variable of agreement, derived from the DFRQ, was not significantly correlated with age (r = .15, p = .10), nor did agreement differ significantly between age cohorts (Table 3). However, discordance about sharing of responsibility was significantly inversely correlated with age (r = −.24, p = .007), with greater discordance associated with younger age, and there was significantly more discordance in the Younger Cohort than in the Older Cohort (t = 3.09, p = .003) (Table 3). Parent-reported diabetes-specific family conflict was positively correlated with youth age (r = .21, p = .02). However, when comparing the two age groups, although the mean conflict score was higher in the Older Cohort than in the Younger Cohort, the difference was not significant (see Table 3).

Table 3.

Means and Standard Deviations for Total Parent-Child Dyadic Agreement and Discordance and Total Parent-reported Diabetes-Specific Family Conflict for the Entire Sample and by Age Cohort

All Participants
(N = 121)		 Younger Cohort
(n = 57)		 Older Cohort
(n = 64)		 P*
AGREEMENT about
sharing of responsibility		 9.3 ±2.6 8.9 ± 2.9 9.7 ± 2.2 .08
DISCORDANCE about
sharing of responsibility		 0.77 ± 1.06 1.09 ± 1.25 0.50 ± 0.77 .003
Diabetes-specific family
CONFLICT (parent-report)		 6.4 ± 3.5 5.9 ± 3.5 6.8 ± 3.4 .16
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*

Younger vs. Older Cohort

Pearson correlations indicated a significant relationship between parent-report of diabetes-specific family conflict and glycemic control for the entire sample of families (r = .36, p < .0001), as well as for families in the Younger Cohort (r = .28, p = .04) and in the Older Cohort (r = .41, p = .0007), with higher levels of reported conflict related to higher (worse) HbA1c levels in all groups (Table 4). However, we did not find a similar pattern of relationships between youth-report of diabetes-specific family conflict and HbA1c. The correlation between HbA1c and conflict as reported by youth in the younger cohort was not significant (r = .15, p = .27). Also, the correlation between HbA1c and conflict as reported by youth in the older cohort was not significant (r = .23, p = .06). Another recent investigation has also reported a relationship between parental report of family behavior and adolescent HbAlc but not between adolescent report of family behavior and HbAlc (Cameron et al, 2008). Thus, a decision was made to focus only on parent-report of conflict in the planned analyses by age group.

Table 4.

Correlation of HbA1c with Dyadic Agreement, Dyadic Discordance, and Parent-reported Diabetes-Specific Family Conflict for the Entire Sample and by Age Cohort

All Participants
(N = 121)		 Younger Cohort
(n = 57)		 Older Cohort
(n = 64)
HbA1c with r p r p r p
     Dyadic Agreement −.21 .02 −.32 .02 −.16 NS
     Dyadic Discordance .12 NS .22 NS .12 NS
     Diabetes-Specific Conflict .36 <.0001 .28 .04 .41 .0007
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Dyadic agreement was significantly correlated with HbA1c levels in the entire sample (r = −.21, p < .02), with greater dyadic agreement related to lower (better) HbA1c levels. A breakdown by age cohort revealed that only in the Younger Cohort was dyadic agreement related to HbA1c levels (r = −.32, p < .02). Dyadic agreement and HbA1c levels were not significantly correlated for families in the Older Cohort. Dyadic discordance was not significantly correlated with HbA1c for the entire sample or for either age cohort. These relationships are reported in Table 4.

To further explore the relationship between dyadic agreement, diabetes-specific family conflict, and glycemic control in this sample, we constructed a multivariate model with HbA1c as the dependent variable. Age group, gender, diabetes duration, parent-report of diabetes-specific family conflict, and dyadic agreement were entered simultaneously in the model as independent variables. In a significant model, the independent variables accounted for 20% of the variance in HbA1c (R2 = .20, F = 5.77, p < .0001). Parent-report of family conflict and dyadic agreement were the only independent predictors of HbA1c when controlling for potential confounders. Less family conflict (p = .0003) and greater dyadic agreement (p = .02) were associated with lower HbA1c (Table 5).

Table 5.

Summary of Regression Analysis for Variables Predicting Youth HbA1c (N=121)

Variable B SE B β
Age group (younger vs. older) 0.41 0.23 .15
Gender (female vs. male) 0.24 0.23 .09
Diabetes duration 0.05 0.04 .12
Diabetes-specific family conflict 0.12 0.03 .32*
Dyadic agreement −0.11 0.05 −.20**
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Note. Variables were entered simultaneously into the model (F = 5.77, R2 = .20, p < .0001).

*

p = .0003.

**

p = .02

Discussion

The primary aim of this study was to explore the relationships between glycemic control, diabetes-specific family conflict, and the dyadic measures of agreement and discordance with respect to the sharing of diabetes management responsibilities in families with 9- to 14-year-old youth with T1DM. In our sample from 4 clinical sites, there was significantly higher discordance for parent-child dyads in the younger, pre-teen cohort when compared with discordance in parent-child dyads in the older cohort. This suggests that abrupt changes in family-sharing of diabetes management responsibilities are likely beginning to occur in the pre-teen age cohort. This finding is consistent with the qualitative research of Schilling et al. (2006) who also reported that parents begin to transfer responsibilities for diabetes management children in late childhood, around 8 to 11 years of age.

Moreover, a relationship between agreement around responsibility-sharing and glycemic control was found only for dyads in the Younger Cohort (9 to 11 years). In other words, only in the pre-teen cohort did we find a relationship between parent-child agreement with respect to responsibility-sharing and glycemic control, with dyads with higher agreement having youth in the best glycemic control. It is possible that agreement was significantly related to HbA1c only for this younger cohort because in the older, young teen cohort, glycemic control was more likely to be impacted by pubertal hormones (Amiel et al., 1986). Supporting this conclusion is the significant difference in the proportion of pubertal or post-pubertal youth in the two age cohort. When considering only the 88 youth with available Tanner staging data, the Younger Cohort was 50% pubertal and 0% post-pubertal whereas the Older Cohort was 63% pubertal and 28% post-pubertal.

In our entire sample, as well as within each age cohort, higher levels of parent-reported diabetes-specific family conflict were related to worse glycemic control in the youth. Other investigations have also found that higher levels of family conflict are related to worse glycemic control (Miller & Drotar, 2003). It has also been reported that family conflict with respect to diabetes management increases significantly from late childhood over the transition to adolescence (Anderson et al., 2002; Wysocki, Harris, Buckloh, Wilkinson, et al., 2006). In this sample of cross-sectional data, age was positively correlated with parent-report of diabetes-specific family conflict. However, although parents in the Older Cohort reported more conflict than parents in the Younger Cohort, the difference was not statistically significant.

Whereas dyadic measures of family behavior in diabetes can illuminate how key aspects of the parent-child relationship are changing over the transition to adolescence (Lerner et al., 1996), our study has several limitations. First, we derived dyadic variables from self-report data, rather than from direct behavioral observations of interactions between parents and their 9- to 14-year-old children with T1DM. Moreover, our findings are based on cross-sectional data. Longitudinal studies are needed to prospectively track differences in dyadic measures in cohorts of older children transitioning to adolescence and their parents. Finally, some of the significant correlations in our results are modest and await replication in other longitudinal or prospective studies. Despite these limitations, our study does identify diabetes-specific aspects of the parent-child relationship that are linked to glycemic outcomes and provides important information for future research in this area. Moreover, it is noteworthy that recent findings from a large European study of over 2,000 adolescents and parents reported cross-sectional data very consistent with that of the present study (Cameron et. al, 2008)

Our findings have several clinical implications. Studying parent-child dyadic variables can help to identify “potentially modifiable” family variables, such as clear communication with respect to responsibility-sharing for diabetes tasks which can be targeted in family-based interventions to optimize the glycemic control of youth in this vulnerable developmental period (Butler et al., 2008). Cameron and colleagues have observed that while many researchers have documented the relationship between family structure (eg. number of parents in the home) and metabolic outcomes in adolescents with diabetes, “…these aspects of family structure…are most intractable and least amenable to intervention by health professionals, and these investigators state that their finding of a relationship between discrepancies in parent and adolescent reports of responsibility for diabetes tasks ‘…demonstrated the importance of family dynamics in determining metabolic outcomes in Type 1 diabetes.” (2008, p. 467). Because most youth with T1DM are seen by a multidisciplinary team every three months for regular diabetes follow-up care (Silverstein et al., 2005), our findings suggest that clinicians engage older children and their parents in direct discussions about handling the transfer of responsibility for diabetes management tasks. . Our findings along with those of Cameron and colleagues (2008) suggest that pediatric diabetes clinicians should initiate discussions with transitioning youth and their parents in order to clarify who in the family is taking responsibility for the many different tasks involved in managing diabetes. The most recent “Standards for the Care of Children and Adolescents with Type 1 Diabetes” of the American Diabetes Association recommends the following during the adolescent period: “continuing to involve parents appropriately with shared management… finding the degree of parental involvement that is comfortable for all involved, without risking deterioration in glycemic control from over- or under-involvement” (Silverstein et al., 2005, p. 190). Our findings expand this recommendation to suggest that as youth with T1DM approach adolescence (at approximately 9- to 11-years-old), the diabetes team should begin to engage parent-child dyads in discussions of how management responsibilities for diabetes tasks will be shared in the family and the optimal transfer of responsibilities over the early-adolescent age period within each unique family system.

Acknowledgement

The following institutions and investigators comprised the steering committee of the Family Management of Childhood Diabetes multi-site trial. This research was supported by the intramural research program of the National Institutes of Health, National Institute of Child Health and Human Development. Children's Memorial Hospital, Chicago, Illinois: Jill Weissberg-Benchell, PhD, Grayson Holmbeck, PhD. Contract N01-HD-4-3363. National Institute of Child Health and Human Development, Bethesda, Maryland: Bruce Simons-Morton, EdD, Tonja R. Nansel, PhD, Ronald J. Iannotti, PhD, Rusan Chen, PhD. Texas Children's Hospital, Houston, Texas: Barbara Anderson, PhD. Contract N01-HD-4-3362. Nemours Children's Clinic, Jacksonville, Florida: Tim Wysocki, PhD, Amanda Lochrie, PhD. Contract N01-HD-4-3361. Joslin Diabetes Center, Boston, Massachusetts: Lori Laffel, MD, MPH, Deborah Butler, MSW, Korey Hood, PhD, Lisa Volkening, MA. Contract N01-HD-4-3364. James Bell Associates, Arlington, Virginia: Cheryl McDonnell, PhD, MaryAnn D'Elio. Contract N01-HD-3-3360.

Contributor Information

Barbara J. Anderson, Texas Children's Hospital

Grayson Holmbeck, Loyola University Chicago

Ronald J. Iannotti, Eunice Kennedy Shriver National Institute of Child Health and Human Development

Siripoom V. McKay, Texas Children's Hospital

Amanda Lochrie, Nemours Children's Clinic

Lisa K. Volkening, Joslin Diabetes Center

Lori Laffel, Joslin Diabetes Center

References

  1. Allen DA, Tennen H, McGrade BJ, Affleck G, Ratzan S. Parent and child perceptions of the management of juvenile diabetes. Journal of Pediatric Psychology. 1983;8:129–141. doi: 10.1093/jpepsy/8.2.129. [DOI] [PubMed] [Google Scholar]
  2. Amiel SA, Sherwin RS, Simonson DC, Lauritano AA, Tamborlane WV. Impaired insulin action in puberty: A contributing factor to poor glycemic control in adolescents with diabetes. New England Journal of Medicine. 1986;315:215–219. doi: 10.1056/NEJM198607243150402. [DOI] [PubMed] [Google Scholar]
  3. Anderson BJ, Auslander WF. Research on diabetes management and the family: A critique. Diabetes Care. 1989;3:696–702. doi: 10.2337/diacare.3.6.696. [DOI] [PubMed] [Google Scholar]
  4. Anderson BJ, Auslander WF, Jung KC, Miller JP, Santiago JV. Assessing family sharing of diabetes responsibilities. Journal of Pediatric Psychology. 1990;15:477–492. doi: 10.1093/jpepsy/15.4.477. [DOI] [PubMed] [Google Scholar]
  5. Anderson BJ, Brackett J. Diabetes in children. In: Snoek FJ, Skinner TC, editors. Psychology in diabetes care. Second edition John Wiley & Sons; West Sussex, England: 2005. pp. 1–25. [Google Scholar]
  6. Anderson BJ, Brackett J, Ho J, Laffel LMB. An office-based intervention to maintain parent-adolescent teamwork in diabetes management. Impact on parent involvement, family conflict, and subsequent glycemic control. Diabetes Care. 1999;22:713–721. doi: 10.2337/diacare.22.5.713. [DOI] [PubMed] [Google Scholar]
  7. Anderson BJ, Ho J, Brackett J, Finkelstein D, Laffel L. Parental involvement in diabetes management tasks: Relationships to blood glucose monitoring adherence and metabolic control in young adolescents with insulin-dependent diabetes mellitus. Journal of Pediatrics. 1997;130:257–265. doi: 10.1016/s0022-3476(97)70352-4. [DOI] [PubMed] [Google Scholar]
  8. Anderson BJ, Vangsness L, Connell A, Butler D, Goebel-Fabbri A, Laffel LMB. Family conflict, adherence, and glycemic control in youth with short duration type 1 diabetes. Diabetic Medicine. 2002;19:635–642. doi: 10.1046/j.1464-5491.2002.00752.x. [DOI] [PubMed] [Google Scholar]
  9. Barber BK. Parental psychological control: Revisiting a neglected construct. Child Development. 1996;67:3296–3319. [PubMed] [Google Scholar]
  10. Beck JS, Beck AT, Jolly J. Manual for the Beck Youth Inventories of Emotional and Social Adjustment. The Psychological Corporation; San Antonio, Texas: 2001. [Google Scholar]
  11. Butler DA, Zuehlke JB, Tovar A, Volkening LK, Anderson BJ, Laffel LMB. The impact of modifiable family factors on glycemic control among youth with type 1 diabetes. Pediatric Diabetes. 2008;9:373–381. doi: 10.1111/j.1399-5448.2008.00370.x. [DOI] [PubMed] [Google Scholar]
  12. Chase HP. Understanding Diabetes. 11th Ed. Children's Diabetes Foundation at Denver; Denver, Colorado: 2006. [Google Scholar]
  13. Cook W, Kenny DA. Examining the validity of self-report assessment of family functioning: A question of the level of analysis. Journal of Family Psychology. 2006;20:209–216. doi: 10.1037/0893-3200.20.2.209. [DOI] [PubMed] [Google Scholar]
  14. Cox D, Irvine A, Gonder-Frederick L, Nowacek G, Butterfield J. Fear of hypoglycemia: Quantification, validation, and utilization. Diabetes Care. 1987;10:617–621. doi: 10.2337/diacare.10.5.617. [DOI] [PubMed] [Google Scholar]
  15. Diabetes Control and Complications Trial (DCCT) Research Group The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus. New England Journal of Medicine. 1993;329:977–986. doi: 10.1056/NEJM199309303291401. [DOI] [PubMed] [Google Scholar]
  16. Ellis DA, Frey M, Narr-King S, Templin T, Cunningham PB, Cakan N. The effects of multisystemic therapy on diabetes stress among adolescents with chronically poorly controlled type 1 diabetes: Findings from a randomized, controlled trial. Pediatrics. 2005;116:826–832. doi: 10.1542/peds.2005-0638. [DOI] [PubMed] [Google Scholar]
  17. Epidemiology of Diabetes Interventions and Complications (EDIC) Research Group Beneficial effect of intensive therapy of diabetes during adolescence: Outcomes after the conclusion of the Diabetes Control and Complications Trial (DCCT) Journal of Pediatrics. 2001;139:804–812. doi: 10.1067/mpd.2001.118887. [DOI] [PubMed] [Google Scholar]
  18. Harris MA, Wysocki T, Sadler M, Wilkinson K, Harvey LM, Buckloh LM, et al. Validation of a structured interview for the assessment of diabetes self-management. Diabetes Care. 2000;23:1301–1304. doi: 10.2337/diacare.23.9.1301. [DOI] [PubMed] [Google Scholar]
  19. Hartos JL, Eitel P, Simons-Morton B. Do parent-imposed delayed licensure and restricted driving reduce risky driving behaviors among newly licensed teens? Prevention Science. 2001;2:113–122. doi: 10.1023/a:1011595714636. [DOI] [PubMed] [Google Scholar]
  20. Hauser ST, Jacobson AM, Lavori P, Wolfsdorf JI, Herskowitz RD, Milley J, et al. Adherence among children and adolescents with insulin-dependent diabetes mellitus over a four-year longitudinal follow-up: II. Immediate and long-term linkages with the family milieu. Journal of Pediatric Psychology. 1990;15:527–542. doi: 10.1093/jpepsy/15.4.527. [DOI] [PubMed] [Google Scholar]
  21. Holmbeck GN. A model of family relational transformations during the transition to adolescence: Parent-adolescent conflict and adaptation. In: Graber JA, Brooks-Gunn J, Petersen AC, editors. Transitions through adolescence: Interpersonal domains and context. Erlbaum Associates; Malwah, NJ: 1996. pp. 167–199. [Google Scholar]
  22. Hood KK, Butler DA, Anderson BJ, Laffel LMB. Updated and revised Diabetes Family Conflict Scale. Diabetes Care. 2007;30:1764–1769. doi: 10.2337/dc06-2358. [DOI] [PMC free article] [PubMed] [Google Scholar]
  23. Hood KK, Butler DA, Volkening LK, Anderson BJ, Laffel LMB. The Blood Glucose Monitoring Communication Questionnaire: An instrument to measure affect specific to blood glucose monitoring. Diabetes Care. 2004;27:2610–2615. doi: 10.2337/diacare.27.11.2610. [DOI] [PubMed] [Google Scholar]
  24. Iannotti RJ, Schneider S, Nansel TR, Haynie DL, Plotnick LP, Clark LM, et al. Self-efficacy, outcome expectations, and diabetes self-management in adolescents with type 1 diabetes. Journal of Developmental and Behavioral Pediatrics. 2006;27:98–105. doi: 10.1097/00004703-200604000-00003. [DOI] [PubMed] [Google Scholar]
  25. Ingersoll GM, Orr DP, Herrold AJ, Golden MP. Cognitive maturity and self-management among adolescents with insulin-dependent diabetes mellitus. Journal of Pediatrics. 1986;108:620–623. doi: 10.1016/s0022-3476(86)80852-6. [DOI] [PubMed] [Google Scholar]
  26. Jackson C, Henriksen L, Foshee VA. The Authoritative Parenting Index: Predicting health risk behaviors among children and adolescents. Health Education & Behavior. 1998;25:319–337. doi: 10.1177/109019819802500307. [DOI] [PubMed] [Google Scholar]
  27. Johnson SB, Silverstein J, Rosenbloom A, Carter R, Cunningham W. Assessing daily management in childhood diabetes. Health Psychology. 1986;5:545–564. doi: 10.1037/0278-6133.5.6.545. [DOI] [PubMed] [Google Scholar]
  28. Kovacs M. The Children's Depression Inventory (CDI) Psychopharmacology Bulletin. 1985;21:995–998. [PubMed] [Google Scholar]
  29. Lerner RM, Lerner JV, von Eye A, Ostrum CW, Nitz K, Talwar-Soni R, et al. Continuity and discontinuity across the transition of early adolescence: A developmental contextual perspective. In: Graber JA, Brooks-Gunn J, Petersen AC, editors. Transitions through adolescence: Interpersonal domains and context. Erlbaum Associates; Malwah, NJ: 1996. pp. 3–22. [Google Scholar]
  30. Levitt MJ, Guacci-Franco N, Levitt JL. Convoys of social support in childhood and early adolescence: Structure and function. Developmental Psychology. 1993;29:811–818. [Google Scholar]
  31. Lewis M, Takahashi K. Beyond the dyad: Conceptualization of social networks. Karger; Basel, Germany: 2005. [Google Scholar]
  32. Matheny A, Wachs T, Ludwig J, Phillips K. Bringing order out of chaos: Psychometric characteristics of the Confusion, Hubbub, and Order Scale. Journal of Applied Developmental Psychology. 1995;16:429–444. [Google Scholar]
  33. Miller VA, Drotar D. Discrepancies between mother and adolescent perceptions of diabetes-related decision-making autonomy and their relationship to diabetes-related conflict and adherence to treatment. Journal of Pediatric Psychology. 2003;28:265–274. doi: 10.1093/jpepsy/jsg014. [DOI] [PubMed] [Google Scholar]
  34. Nansel TR, Anderson BJ, Laffel LMB, Simons-Morton BG, Weissberg-Benchell J, Wysocki T, et al. A multi-site clinical trial of a clinic-integrated intervention for promoting family management of pediatric type 1 diabetes: Feasibility and design. Pediatric Diabetes. 2008 doi: 10.1111/j.1399-5448.2008.00448.x. e-pub ahead of print August 2008. [DOI] [PMC free article] [PubMed] [Google Scholar]
  35. Nansel TR, Rovner AJ, Haynie D, Iannotti RJ, Simons-Morton B, Wysocki T, et al. Development and validation of the Collaborative Parent Involvement scale for youths with type 1 diabetes. Journal of Pediatric Psychology. 2008 doi: 10.1093/jpepsy/jsn058. e-pub ahead of print June 21, 2008. [DOI] [PMC free article] [PubMed] [Google Scholar]
  36. Palmer DL, Berg CA, Wiebe DJ, Beveridge RM, Korbel CD, Upchurch R, et al. The role of autonomy and pubertal status in understanding age differences in maternal involvement in diabetes responsibility across adolescence. Journal of Pediatric Psychology. 2004;29:35–46. doi: 10.1093/jpepsy/jsh005. [DOI] [PubMed] [Google Scholar]
  37. Piazza-Waggoner C, Modi AC, Powers SW, Williams LB, Dolan LM, Patton SR. Observational assessment of family functioning in families with children who have type 1 diabetes mellitus. Journal of Developmental & Behavioral Pediatrics. 2008;29:101–105. doi: 10.1097/DBP.0b013e31815f24ce. [DOI] [PubMed] [Google Scholar]
  38. Rubin R, Young-Hyman D, Peyrot M. Parent-child responsibility and conflict in diabetes care. Diabetes. 1989;38(Suppl 2):28. [Google Scholar]
  39. Schilling LS, Knafl KA, Grey M. Changing patterns of self-management in youth with type 1 diabetes. Journal of Pediatric Nursing. 2006;21:412–424. doi: 10.1016/j.pedn.2006.01.034. [DOI] [PubMed] [Google Scholar]
  40. Silverstein J, Klingensmith G, Copeland K, Plotnick L, Kaufman F, Laffel L, et al. Care of children and adolescents with type 1 diabetes: A statement of the American Diabetes Association. Diabetes Care. 2005;28:186–212. doi: 10.2337/diacare.28.1.186. [DOI] [PubMed] [Google Scholar]
  41. Skinner TC, Murphy H, Huws-Thomas M. Diabetes in adolescents. In: Snoek FJ, Skinner TC, editors. Psychology in diabetes care. Second edition John Wiley & Sons; West Sussex, England: 2005. pp. 27–52. [Google Scholar]
  42. Smetana J, Asquith P. Adolescents' and parents' conceptions of parental authority and personal autonomy. Child Development. 1994;65:1147–1162. doi: 10.1111/j.1467-8624.1994.tb00809.x. [DOI] [PubMed] [Google Scholar]
  43. Varni JW, Seid M, Kurtin PS. The PedsQL™ 4.0: Reliability and validity of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales in healthy and patient populations. Medical Care. 2001;39:800–812. doi: 10.1097/00005650-200108000-00006. [DOI] [PubMed] [Google Scholar]
  44. Varni J, Burwinkle T, Jacobs J, Gottschalk M, Kaufman F, Jones K. The PedsQL in type 1 and type 2 diabetes. Diabetes Care. 2003;26:631–637. doi: 10.2337/diacare.26.3.631. [DOI] [PubMed] [Google Scholar]
  45. Wiebe DJ, Berg CA, Korbel C, Palmer DL, Beveridge RM, Upchurch R, et al. Children's appraisals of maternal involvement in coping with diabetes: Enhancing our understanding of adherence, metabolic control and quality of life across adolescence. Journal of Pediatric Psychology. 2005;30:167–178. doi: 10.1093/jpepsy/jsi004. [DOI] [PubMed] [Google Scholar]
  46. Wysocki T, Taylor A, Hough BS, Linscheid TR, Yeates KO, Naglieri JA. Deviation from developmentally appropriate self-care autonomy: Association with diabetes outcomes. Diabetes Care. 1996;19:119–125. doi: 10.2337/diacare.19.2.119. [DOI] [PubMed] [Google Scholar]
  47. Wysocki T, Harris MA, Buckloh LM, Mertlich D, Lochrie AS, Taylor A, et al. Effects of behavioral family systems therapy for diabetes on adolescents' family relationships, treatment adherence, and metabolic control. Journal of Pediatric Psychology. 2006;31:928–938. doi: 10.1093/jpepsy/jsj098. [DOI] [PubMed] [Google Scholar]
  48. Wysocki T, Harris MA, Buckloh LM, Wilkinson K, Sadler M, Mauras N, et al. Self-care autonomy and outcomes of intensive therapy or usual care in youth with type 1 diabetes. Journal of Pediatric Psychology. 2006;31:1036–1045. doi: 10.1093/jpepsy/jsj017. [DOI] [PubMed] [Google Scholar]

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