Sibling psychological adjustment to type 1 diabetes mellitus

Objective:  Type 1 diabetes mellitus (T1DM) is a chronic condition whose management affects the whole family, and siblings of children with chronic conditions have been shown to be at higher risk of emotional and behavioural problems. The aims of this study were to investigate sibling adjustment to T1DM using a cross-sectional questionnaire survey design.
Methods:  Forty-one families (48% of those eligible) were recruited from a children's diabetes clinic. From each family, one parent and one sibling of the child with T1DM participated. Parents completed questionnaires measuring sibling adjustment and measures of major life events, social support and parenting stress. Demographic and disease information was obtained from medical records. Siblings completed questionnaires assessing cognitive appraisals and coping strategies. A semi-structured interview was also administered to siblings.
Results:  Siblings were found to be better adjusted than normative data (p < 0.01). Factors associated with poorer sibling adjustment were higher sibling age at diagnosis, higher levels of parenting stress, more difficult sibling temperament, poorer adjustment of the child with T1DM, higher levels of parental distress and more negative sibling perceptions of diabetes and its impact on the family. Results suggest that sibling perceptions of diabetes and parental distress are important predictors of sibling adjustment to T1DM.
Conclusions:  The findings from this study emphasize the relationships between the adjustment of the sibling and that of the child with T1DM and their parents. Many parents worry about how the siblings may cope with the diabetes, but the results of this study are generally reassuring.     

Predicting health-related quality of life of parents of children with inherited metabolic diseases

Aim:  The aim of this study was to examine medical, socio-demographic and psychosocial determinants of health-related quality of life (HRQoL) of parents of children with metabolic diseases.
Methods:  A survey among parents of children with metabolic diseases (children aged 1–19 years, diagnosed >1 year before the start of the study, living at home). Parents were approached through the Emma Children's Hospital, and through a national parent and patient association. HRQoL was assessed using the TNO-AZL Questionnaire for Adult's Health Related Quality of Life (TAAQOL), describing 12 domains of HRQoL. Predictor variables were taken from a self-report questionnaire. Univariate and multivariate logistic regression analyses were performed to predict which parents were at risk for HRQoL impairment.
Results:  Mainly psychosocial determinants were predictive for parental HRQoL. Emotional support was protective for parental HRQOL while loss of friendship was a risk factor for HRQoL impairment. Medical and socio-demographic variables did not consistently predict parental HRQoL.
Conclusion:  Psychosocial determinants appeared more important in predicting parental HRQoL than medical and socio-demographic variables. Interventions should be focused on supporting parents combining the care for their children with a social life. Further research on this subject is necessary. In the meantime, involved medical specialists should pay structural attention to parental functioning.     

Progression to type 1 diabetes and autoantibody positivity in relation to HLA-risk genotypes in children participating in the ABIS study

Background:  Autoantibodies against beta-cell antigens together with human leukocyte antigen (HLA)-risk genotypes are used as predictive markers for type 1 diabetes (T1D). In this study, we have investigated the role of HLA-risk and -protective genotypes for development of beta-cell autoantibodies and progression to T1D in healthy children.
Methods:  T1D-related HLA genotypes and autoantibodies against glutamic acid decarboxylase [glutamic acid decarboxylase antibodies (GADA)] and islet antigen-2 (IA-2A) were studied at 1, 2.5 and 5 yr of age in unselected healthy children and children with T1D participating in the All Babies In Southeast Sweden (ABIS) study.
Results:  GADA or IA-2A positivity at 5 yr of age was associated with DR4-DQ8 haplotype and DR3-DQ2/DR4-DQ8 genotype. By the age of 6–7 yr, we identified 32 children with T1D among the 17 055 participants in the ABIS study. Eight of 2329 (0.3%) non-diabetic children had permanent autoantibodies, and 143 of 2329 (6%) children had transient autoantibodies. HLA-risk genotypes associated with T1D, whereas protective genotypes were seldom found in children with T1D. Children with permanent autoantibodies had more often risk-associated DR4-DQ8 haplotype than autoantibody-negative children. No associations with HLA-risk or -protective genotypes were found for transient autoantibodies.
Conclusions:  The strong relation between HLA-risk alleles and T1D once again confirmed that HLA-risk genotypes play an important role for development of T1D. However, HLA genotypes seem not to explain induction of autoantibodies, especially transient autoantibodies, in the general population, emphasizing the role of environmental factors in the initiation of autoimmunity. It seems that HLA-risk genotypes are responsible for maturation of the permanent autoantibody response.     

Malnutrition in cystic fibrosis: Psychosocial functioning of patients and their families

The relationship between nutritional status and psychosocial functioning was examined in 35 children with cystic fibrosis, aged 7-16 years. Twelve malnourished children and their families were compared with 23 well nourished children and their families. Established measures of adjustment and coping in the children, parents and families were used. Few statistically significant differences between the two groups emerged, and all comparisons of psychosocial functioning were not significant. The results of the study suggest that there is no relationship between the nutritional status of the child with cystic fibrosis and the current psychosocial adjustment and coping of child, parents and family.     

The psychological burden of patients with beta thalassemia major in Syria

Background:  The objective of this study was to identify the psychosocial burden of thalassemia on children with β-thalassemia major in Damascus, Syria.
Methods:  The sample consisted of thalassemic patients aged 6–18 years old, admitted to the thalassemia center in Damascus, accompanied by their parents. The parents answered a structured questionnaire (developed by Ratip & Modell) on behalf of their children.
Results:  The psychosocial burden affected many aspects of life such as education, time off school, sporting capabilities, difference from friends/siblings, social interactions, family adjustment, anxiety, isolation, and stigmatization. Results indicated a significant association between socio-demographic characteristics such as age, gender, school grade, current schooling, work, family income, and the occurrence of complications with the psychosocial burden variables including education, time off school, sporting capabilities, difference from friends, social interactions and stigmatization.
Conclusions:  The findings suggest the need for psychological support as well as medical help for thalassemic families. Health professionals need to assess the psychological status of children with thalassemia and that of their families in order to minimize these burdens; thus, nurses must provide psychosocial support for children with thalassemia and encourage other family members to assist in providing support for the affected children.
Implication:  The current study triggered the need for new policies and new roles for the community health nurse and social workers as well as the need for counseling and educational programs for children with thalassemia.     

Children adopted from China: a prospective study of their growth and development

Background:  China has become a lead country for international adoption because of the relatively young age of the children and reported positive conditions of the orphanages. This study examined the process and outcome of growth and development of children adopted from China over their first two years with their adoptive families.
Method:  Seventy infant girls adopted from China at 8 to 21 months of age (Mean age = 13 months) were examined on arrival in Canada and 6, 12, and 24 months later. Comparisons were made with non-adopted Canadian girls of similar age and from a similar family background as adoptive parents on indices of growth and standardized measures of mental, psychomotor, and language development.
Results:  At arrival, children adopted from China were smaller physically and exhibited developmental delays compared to current peers. Children adopted from China were functioning in the average range on physical and developmental measures within the first 6 months following adoption. However, they were not performing as well as current peers until the end of their second year after adoption. Even then, there was developmental variation in relation to comparison children and continuation of relatively smaller size with respect to height, weight, and head circumference. Physical measurement was related to outcomes at various points on all developmental measures.
Conclusions:  Deprivation in experience in the first year of life has more long-lasting effects on physical growth than on mental development. The variable most consistently related to development was height-to-age ratio. As a measure of nutritional status, the findings reinforce the critical importance of early nutrition.     

Psychosocial Outcomes for Preschool Children and Families After Surgery for Complex Congenital Heart Disease

The purpose of the current study was to assess the psychosocial outcomes of preschool-aged survivors (ages 3–6 years) of hypoplastic left heart syndrome (HLHS; n = 13) and transposition of the great arteries (TGA; n = 13). Parents completed the following measures: Pediatric Quality of Life Inventory, Impact on the Family Scale, Parenting Stress Index, Parent Behavior Checklist, and Child Behavior Checklist. Quality of life scores did not differ from those of healthy controls. Parents of children with HLHS reported more negative impact of the child’s illness on the family and more parenting stress than parents of children with TGA. Parents of both groups of children were more permissive in their parenting style than parents of healthy controls. Children with HLHS had higher rates of attention and externalizing behavior problems than children with TGA. The results highlight the need for practitioners working with these children and families to ask about parental stress, family functioning, and behavioral expectations for the child in the context of routine medical/cardiac follow-up.     

Correlates of depressive symptoms in adolescents with type 1 diabetes

Abstract: Purpose:  To determine correlates of depression in adolescents with type 1 diabetes.
Methods:  Data on 117 adolescents participating in a longitudinal study (72 F, 45 M; 95 W; age = 14.3 ± 2.0 yr; duration = 6.3 ± 3.7) were collected with the Children's Depression Inventory (CDI), Diabetes Family Behavior Scale (DFBS), Family Adaptability and Cohesion Scale (FACES), and chart review at study entry and 2-year follow-up.
Results:  Fifteen per cent of adolescents in this sample demonstrated depressive symptoms (CDI > 13) at study entry and 10% at 2 yr follow-up. Adolescents aged 14.1–16 yr and those with diabetes > 10 yr demonstrated the highest rates. When demographic/clinical variables were controlled, the DFBS warmth-caring subscale (p = 0.001) and the FACES adaptability subscale (p = 0.005), but not DFBS guidance-control (p = 0.635), contributed significantly to the explained variance in depressive symptoms ( R ² = 0.27) at study entry. At 2 yr follow-up, study entry CDI scores were the only significant predictor of depressive symptoms ( R ² = 0.40). By 2 yr, adolescents with depressive symptoms had significantly higher HbA1c than those without (p = 0.03).
Conclusion:  The prevalence of depressive symptoms in adolescents with type 1 diabetes coupled with the potential impact of depressive symptoms on metabolic control suggest the need for early diagnosis and treatment. Greater attention to psychosocial outcomes of youth, family functioning, and the potential burden of diabetes over time to youth/families is indicated.     

Psychosocial functioning of pediatric renal and liver transplant recipients

Abstract:  The current study examined child- and parent-reported child psychosocial functioning in a large sample of children who received solid organ transplantation. Participants included 64 children who received kidney or liver transplantation and 64 parents who completed a standardized measure of children's psychosocial functioning (BASC; Reynolds & Kamphaus, 1992). Although post-transplant children reported significantly fewer psychosocial difficulties than the normative average, parents reported that children had some psychosocial difficulties, particularly internalizing problems. There were no differences in psychosocial functioning between deceased donor organ and living donor organ recipients. Given the discrepancy between parent and child report, the results suggest that children may underreport psychosocial difficulties following transplantation or parents may over-report children's difficulties. Clinicians and researchers are encouraged to obtain assessment information from multiple reporters when assessing psychosocial functioning in this population.     

A randomized prospective study of insulin pump vs. insulin injection therapy in very young children with type 1 diabetes: 12-month glycemic, BMI, and neurocognitive outcomes

Objective:  To compare glycemic control, body mass index (BMI), neurocognitive function, and parenting stress for preschool-aged diabetic children randomized to treatment either with continuous subcutaneous insulin infusion (CSII) or with intensive insulin injection therapy (IIT).
Methods:  Children <5 yr of age diagnosed with type 1 diabetes mellitus for at least 12 months were randomized to either CSII (n = 21) or IIT (n = 21) for 6 months. After 6 months, the IIT group began CSII therapy and the CSII group continued on pumps. Hemoglobin A1c (HbA1c) and BMI percent were collected at baseline, 3, 6, 9, and 12 months. Neurocognitive assessments (Developmental Test of Visual–Motor Integration and Stanford–Binet Intelligence Scale: Fourth Edition) were administered to children, and parenting and child behavior assessments (Parenting Stress Index and Child Behavior Checklist) were completed by parents and at baseline, 6, and 12 months.
Results:  Thirty-five children completed the study. Mean HbA1c decreased significantly over the study period (8.9% ± 0.6 vs. 8.5% ± 0.7, p = 0.006). Initiation of CSII resulted in an HbA1c decrease of 0.4% after 3 months (p = 0.002); however, in the CSII first group, the HbA1c at 12 months was not significantly different from study start (8.8% ± 0.6 vs. 8.5% ± 0.6; p = 0.4). There were no significant changes in BMI%, neurocognitive, parenting, and child behavior measures between groups.
Conclusion:  Initiation of CSII vs. continuing IIT does not significantly influence HbA1c, BMI, neurocognitive, or parenting stress parameters in a research study setting.     

Pilot evaluation of an early intervention programme for children at risk

Aim:   Children from vulnerable families, where there is social disadvantage, parental mental health problems, substance abuse or domestic violence, are at risk of attention, language, learning and behaviour problems because of poor attachment and lack of stimulation in the early years. Three primary modes of early intervention have been shown to produce sustained improvements in children's health, education and well-being despite these risk factors. This pilot aimed to evaluate the Spilstead Model (SM) of early intervention in Australia, which provides a uniquely integrated model of centre-based care, incorporating all three best-practice approaches.
Method:   The study targeted all new clients who attended the SM programme over a 12-month period. A battery of standardised clinician and parent-rated measures assessed parent, child and family functioning via pre-post test research design.
Results:   Results indicated large effect size changes ( P < 0.01) in parent/child interaction; reduced parent stress; parental satisfaction; parent confidence; parental capacity; family interactions; child well-being; and total family functioning. A total of 71% of children who presented on initial developmental screening with delays in the clinical range were found to be within the normal range on post-testing; 41% moved from the below average range to scores within the normal range in language development. Parents noted improvements in externalising behaviours of large effect size (1.46).
Conclusions:   (i) Results were highly positive for both children and parents; (ii) the synergistic nature of the SM may have the potential to maximise outcomes for families via a cumulative programme effect; and (iii) implications for further research were established.     

New insights into family functioning and quality of life after pediatric liver transplantation

Denny B, Beyerle K, Kienhuis M, Cora A, Gavidia‐Payne S, Hardikar W. New insights into family functioning and quality of life after pediatric liver transplantation. Abstract: Thorough research of the medical aspects of pediatric liver transplantation has given way to recent interest in the impact of the transplantation process on the QOL of recipients and their families. In this cross‐sectional study, we compared the family functioning and QOL of children (n = 30) aged between three and 16 yr (M = 10.10, s.d. = 3.62) who had received a liver transplant in the previous 1–12 yr (M = 5.31, s.d. = 3.44) with non‐transplant children (n = 33), as reported via parent proxy. Results showed that parents of pediatric liver transplant recipients made significantly more adjustments to family routines to accommodate their children, particularly in relation to childcare. Impaired family functioning was also found to be associated with decreased QOL. These preliminary findings of relative deficits in family functioning may inform psychosocial interventions to assist pediatric liver transplant patients and their families. Further investigation beyond a single‐center study incorporating subjective information from pediatric patients and their parents is recommended.     

Special needs of children with type 1 diabetes at primary school: perceptions from parents, children, and teachers

Objective:  To identify the special needs of children with type 1 diabetes at primary school taking into account the perceptions reported by parents, children, and teachers.
Methods:  This was a cross-sectional survey carried out at nine public hospitals with a cohort of 6- to 13-yr-old children. Parents were personally informed about the objectives of the survey and the necessity to involve their children and the teachers. The self-reporting questionnaire included demographic information as well as some questions that helped to evaluate the general situation of children with type 1 diabetes at primary school, main worries about the disease, and possible improvement measures.
Results:  A total of 430 questionnaires were completed and validated of which 39% were filled in by parents, 35% by children, and 26% by teachers. The majority of children were 10–13 yr old and came from public schools. At school, most children required glucose monitoring, but few of them (9–12%) needed insulin administration. Some parents (7%) experienced problems at their schools when they informed them about their children's disease, 2% were finally not accepted, and 1% were forced to change school. Major children's concerns included the ability to recognize hypoglycemia or to self-administer insulin. Parents, teachers, and children demanded better information at school about diabetes and about emergency management.
Conclusions:  The three population groups agreed about the necessity of having more available information on diabetes at schools. Although some discriminatory behavior was still occurring, it seemed it has been diminishing in recent years.     

Disturbed eating behaviors in Taiwanese adolescents with type 1 diabetes mellitus: a comparative study

Objectives:  This study aimed to (i) compare disturbed eating behaviors in adolescents with type 1 diabetes mellitus (T1D) with a matched group of adolescents in Taiwan and (ii) examine the relationships of disturbed eating behaviors to body mass index (BMI) and metabolic control among adolescents with T1D.
Methods:  A cross-sectional study was conducted in southern Taiwan. Seventy-one adolescents with T1D (aged 10–22 yr; 41 females and 29 males) were matched to a group of non-diabetic adolescents. Adolescents completed two self-reported measures of eating behavior, the Bulimic Investigatory Test, Edinburgh and the Eating Attitude Test-26. Metabolic control was assessed by glycosylated hemoglobin A1c levels.
Results:  Both adolescent females and males with T1D had more symptoms of bulimia and bulimic behaviors than their non-diabetic peers. There were no group differences in the proportion of subthreshold eating disorders. BMI and metabolic control were significant factors predicting disturbed eating behaviors.
Conclusions:  Both adolescent females and males with T1D exhibited a higher level of disturbed eating behaviors than their non-diabetic adolescent counterparts. Preventive programs that address disturbed eating behaviors should be provided for adolescents with T1D, particularly for adolescents with a high BMI and poor metabolic control.     

Atopy, home environment and the risk of childhood-onset type 1 diabetes: a population-based case–control study

Background:  The marked increases in the incidence of type 1 diabetes in recent decades strongly suggest the role of environmental influences. These environmental influences remain largely unknown.
Objective:  To investigate atopy and home environment (such as children living at home, sharing a bedroom and house moves) as potential risk factors for type 1 diabetes.
Subjects and method:  In Northern Ireland, 175 children with type 1 diabetes and 4859 control children completed a questionnaire on atopy experience, family composition and home environment. Control children from two age groups (6–8 yr old and 13–14 yr old) were identified from randomly selected primary and secondary schools across Northern Ireland. Cases were identified from a population-based type 1 diabetes register.
Results:  There was little evidence of a difference in the proportion of participants with a history of atopy in the cases compared with controls. There was a significant reduction in the risk of diabetes in children who lived with more siblings {odds ratio (OR) = 0.58 [95% confidence interval (95% CI) 0.39–0.85] in children who lived with three or more siblings compared with one or none} and in children who moved house more often [OR = 0.59 (95% CI 0.40–0.88) in children who moved house twice or more compared with never].
Conclusion:  The reduced risk of type 1 diabetes in children living with siblings, sharing a bedroom and moving house more often could reflect the protection afforded by exposure to infections in early life and consequently may provide support for the hygiene hypothesis.     

Youth and parent education about diabetes complications: health professional survey

Objective:  Avoiding complications is paramount in diabetes management, but little is known about how, when, and what diabetes professionals disclose to parents and youths about this topic.
Research design and method:  Pediatric diabetes experts (n = 534) were surveyed about their practices and attitudes regarding informing parents and youth about long-term diabetic complications.
Results:  Professionals reported giving more information to parents, older children, and children with longer diabetes duration than younger or newly diagnosed children. Principal components analysis was completed to identify measurement factors of the attitudes about information sharing and variables affecting decision-making sections of the survey. These factor scores served as predictor variables in hierarchical multiple regression analyses. More information sharing was associated with more diabetes clinical activity, stronger sense of professional responsibility to disclose this information, less sensitivity about the emotional impact of this teaching, greater concern about exposure to inaccurate information, and less consideration of the family context (R² = 0.282, p ≤ 0.0001). Greater propensity to share information about complications was found among health care providers who reported that they gave less consideration to such variables as the family's prior experience with diabetes in other family members or the child's duration of diabetes or the presence of psychiatric disorders in the child or family members.
Conclusions:  Patient characteristics and professionals' attitudes were associated with experts' willingness to inform families about long-term diabetic complications. Further research should explore how these practice variations affect coping with diabetes.     

Prolonged use of continuous glucose monitors in children with type 1 diabetes on continuous subcutaneous insulin infusion or intensive multiple-daily injection therapy

Objective:  For continuous glucose sensors to improve the treatment of children with type 1 diabetes (T1D), they must be accurate, comfortable to wear, and easy to use. We conducted a pilot study of the FreeStyle Navigator™ Continuous Glucose Monitoring System (Abbott Diabetes Care) to examine the feasibility of daily use of a continuous glucose monitor (CGM) in an extended ambulatory setting.
Methods:  Following a 13-wk trial of daily Navigator use, 45 children with T1D [10.7 ± 3.7 yr, range 4.6–17.6, 24 using insulin pumps; continuous subcutaneous insulin infusion (CSII) and 21 using glargine-based multiple daily injections (MDI)] used the Navigator for an additional 13 wk.
Results:  Navigator use was initially slightly higher in the CSII users than in the MDI users but declined similarly in both groups by 22–26 wk. After 26 wk, 11 (46%) of 24 CSII users and 7 (33%) of 21 MDI users were using the CGM at least 5 d a week. No baseline demographic or clinical factors were predictive of the amount of sensor use at 26 wk. However, Navigator use during weeks 1–13 and scores on a CGM satisfaction survey at 13 wk were predictive of use in weeks 22–26.
Conclusions:  CGM was generally well-tolerated in children with T1D for more than 6 months, and early acceptance of CGM was predictive of extended use of the device. Although many subjects and parents found CGM valuable, the declining usage over time underscores the need to develop new technologies and strategies to increase acceptance, effectiveness, and long-term use of these devices in youth with T1D.     

Type 1 diabetes: increased height and weight gains in early childhood

Objective:  The accelerator/beta-cell stress hypothesis regards insulin resistance as one common basis for type 1 and type 2 diabetes and weight increase as an important trigger of type 1 diabetes. To test this hypothesis, we examined children's height and weight gain from birth to the time of diagnosis of type 1 diabetes.
Method:  Growth charts (n = 316) from children 0–16 yr old up to the time of diagnosis of type 1 diabetes were compared with growth charts from age- and sex-matched controls.
Results:  Compared with their controls, children who developed diabetes had experienced more pronounced gain in both weight and height. In the year of diagnosis, they were taller [0.5 vs. 0.36 standard deviation score (SDS), p < 0.03] and heavier (0.7 vs. 0.45 SDS, p < 0.01). Children who developed diabetes aged 5 yr or less gained more weight during the period between their third month and third year of life (p < 0.01). Children who were diagnosed between 6 and 10 yr of age had gained more in height before they were 5 yr old (p < 0.05). Regression analysis showed that a high weight or a high body mass index (BMI) at 5 yr of age indicated, more than the other measurements, a high risk for diabetes later during childhood, while height and weight at ages less than 5 yr did not add any further information on diabetes risk.
Conclusions:  Rapid growth before 7 yr of age and increased BMI in childhood are risk factors for later type 1 diabetes. These findings support the accelerator/beta-cell stress hypothesis.     

Satisfaction of care in a tertiary level diabetes clinic: correlations with diabetes knowledge, clinical outcome and health-related quality of life

Aim:   Patient satisfaction is regarded as an integral component of the quality of medical care. Therefore, as part of an ongoing process of outcome assessment, we analysed levels of satisfaction of care among patients and parents in our diabetes clinic and its relationship to short-term metabolic control outcome, diabetes knowledge and health-related quality of life (HRQOL).
Methods:   In 2004, parents and their children aged 5–18 years attending the Royal Children's Hospital (RCH) diabetes clinic completed questionnaires reporting their satisfaction with care provided, HRQOL and diabetes knowledge. Concurrent HbA_1c levels were also recorded. The reporting profile was 83 patients, 24 fathers and 110 mothers.
Results:   Generally, both patients and parents were satisfied with diabetes care provided at our tertiary centre. Satisfaction of care was not associated with the clinical outcome of metabolic control (measured by HbA_1c levels), diabetes knowledge or HRQOL measures.
Conclusion:   Most patients and their parents in the RCH diabetes clinic appear generally satisfied with their diabetes care. The degree of satisfaction of care cannot be presumed according to clinical outcome, diabetes knowledge or HRQOL measures.     

The impact of modifiable family factors on glycemic control among youth with type 1 diabetes

Objective:  To identify modifiable family factors impacting glycemic control in youth with type 1 diabetes (T1DM) beyond the anticipated physical, developmental, and behavioral issues associated with adolescence.
Study design:  In 153 youth (aged 8–16 yr) with T1DM duration of 6.3 ± 3.5 yr and average hemoglobin A1c (HbA1c) of 8.4 ± 1.4%, we examined modifiable family factors that might impact adherence to diabetes management and, in turn, influence glycemic control. Youth and parents completed surveys that assessed diabetes-specific knowledge, negative affect related to blood glucose monitoring (BGM), and parental-perceived burden of diabetes care. Clinician report and chart review provided data on growth, pubertal development, and diabetes management tasks. Glycemic control was measured as HbA1c.
Results:  In bivariate analyses, higher parental diabetes-specific knowledge (p < 0.0001), less youth negative affect related to BGM (p = 0.0005), and less parental-perceived burden (p = 0.0008) were associated with lower HbA1c. In a multivariate model controlling for demographic and diabetes-specific variables, these three factors remained independent and significant predictors of HbA1c (R² = 0.31 and p < 0.0001). Higher parental knowledge, less youth negative affect, and less parental burden predicted lower HbA1c, while youth knowledge and parental negative affect did not.
Conclusion:  To attain optimal glycemic control, treatment programs for youth with T1DM should include ongoing efforts to reinforce parental knowledge of diabetes tasks, promote positive youth affect related to diabetes management, and acknowledge and reduce parental-perceived burden of diabetes management.